THIS IS A TROLL FREE ZONE

'One in Four Organisation'...just another group of self proclaimed messiahs?

2011-04-13T16:12:00.003+01:00

From www.oneinfourmag.org

"'What do we do now?' - Mental health, user leadership and communities
One in Four conference 16th March"

Firstly, my advice is to go have a look for yourselves.

My view is what we have is another little clique that sets itself up as some 'expert group'..charging those who can least afford it...even if they are giving a concession to service users. £35 plus travel expenses, is alot to ask of people on the lowest incomes in the country!

How many groups have come before this. Remember the fanfare of spin that came from The National Service User Network (NSUN) and all that dosh they got from Comic Relief and Kings College Fund?. And what exactly has happened to them since, have they made any difference to the lives of people with severe MH problems and where did all that money go?

I know the media (as an entirity) doesn't like discussing mental illness unless it is some headline grabbing story of someone with mental illness running riot with a machete or some half cock theory on 'recovering the mentally ill through work' but surely fraud would be of some interest to them. Possibly 'The Guardian' that has finally jumped off the Happy Clappy bandwagon and started thinking a bit more independantly about what it is like to be mentally ill and the first to be facing the government firing line for no other reason than being mentally ill.

Just where is all the money, that these pseudo MH profs/organisations get, end up? I really think it is time people were told and the media would be best able to get in there and find out...and then share what they find out with the rest of us. Actually, maybe their heart just isn't in it. Mental illness isn't sexy enough. Hmmm..someone/people..somewhere must be able to access this information and get it out there.

From Rethink site...Report by CQC

2011-03-29T19:12:00.000+01:00

The latest report by the Care Quality Commission on the state of healthcare and adult social care, published today, shows that the standards of care for people with mental illness are patchy at best, and neglectful at worst, says charity, Rethink Mental Illness.

Despite people with mental illness being at greater risk of physical health problems such as heart disease, diabetes and stroke, more than a third had not received enough support for their physical health needs and 27 per cent said they had, but only ‘to some extent’.

Despite regular reviews of medication being an indicator of good care, one fifth (19 per cent) had not been asked or couldn’t remember being asked about their medicine for 12 months or longer.

Rethink Mental Illness chief executive, Paul Jenkins, said: “Some of the figures in the CQC report make for grim reading. People with serious mental illness are among the most vulnerable in society and they are not getting the quality of care they need and deserve.

“With increasing numbers of people with mental illness receiving support in the community, access to crisis support is essential. Only just over half of the survey respondents (56 per cent) had an out-of-hours telephone number they could call despite the fact that of those people who did have a number, more than a third had called it in the last 12 months. It is vital that people have the support and help they need to avoid someone’s mental health deteriorating to the point of crisis,” he said.

Rethink Mental Illness is also concerned about people detained under the Mental Health Act. Its concerns about inadequate staffing and over crowded wards - only 21 per cent of the acute wards visited met the recommended 85 per cent bed occupancy – are reinforced by this report.

“We have also long been concerned about people on control orders, whose rights are deprived simply because they are ill and have called on Government to review the whole system. The report shows that the rate of new CTO’s averages nearly 370 a month – way ahead of initial estimates and we welcome the CQC’s further study of these,” says Paul Jenkins.

“It is heartening to see that the majority of people using community mental health services are positive about their contact with staff and this is certainly our own experience. However, what this report clearly shows there is an urgent need for action to drive up standards of care across the board and to ensure that the quality of mental health care is not the luck of the geographical draw,” said Paul Jenkins.

For more information, or to set up an interview please call Elaine Calvert, media relations manager, at Rethink on 020 7840 3132.

Latest Rethink Survey...Nothing New There, I am Afraid

2011-03-29T18:49:00.002+01:00

Whilst straggling around Facebook (feeling like half frozen plate of piddle waiting to be flushed down the lavvy) came across a fleeting post about Rethink's latest survey.

Such as I gathered, before the post was deleted, quite possibly due to my comments around this not being new news at all but same old, same as....Rethink have found that most modern acute units are overcrowded.

FFS!!! How long ago was it ago that Mind did a similar survey and the outcomes were like this. Was it five years? Could be even longer.

Wish I could get hold of the survey to see what else it included....possibly things like:

Patients being left crying in the middle of reception areas, whilst visitors try and pacify them

People on detox for drug addiction stealing from other patients (and before people think I have total attitude towards drug addiction, I don't but I do think there is a strong case for focussed and specific rehab centres for addicts)

The high levels of violent behaviour, often aimed at other patients in acute care.

If I do manage to get hold of the survey, will copy details (such as they are) on here.

Can't help thinking that the next 'independant' survey on acute care...say 5 years down the line..will be saying the same thing or even worse.

Seems Ed Milliband (and 7 Labour MPs) do care about the sick and disabled.....so what now?

2011-03-28T22:39:00.002+01:00

From> BenefitsandWork.co.uk

One very last chance for you to stop the harsh new ESA test

In spite of the fact that the harsh new work capability assessment (WCA), the medical test for employment and support allowance (ESA), became law today, there is still a chance of getting it cancelled.

But it does depend on you urgently attempting to persuade your MP to get off their . . . seat and do something useful before they go off on their Easter holidays next week.

Labour leader Ed Miliband and 7 Labour MPs tabled an early day motion on 23 March ‘praying’ for the new WCA to be annulled. New regulations like these can be overturned by a vote for up to 40 days after they were laid. Because the DWP messed up the laying of the regulations and had to lay them again, the 40 days does not run out until 6 April.

There is a huge irony in the labour party challenging the harsh new WCA when they actually drew it up themselves, but didn’t have time to implement it before being booted out of power. The line labour is taking to justify their u-turn is that the recommendations in the Harrington report should be implemented before any consideration is given to further changes to ESA.

And, whatever the reason for labour’s change of tactic, there is a chance that there could be a debate, a slim possibility there could be a vote and a tiny chance that the government could be defeated. We know that a similar process in the House of Lords ended in feeble surrender last week, but a tiny chance is better than no hope whatsoever.

So, please consider contacting your MP as a matter of urgency and ask them to support EDM 1651 to try to halt this shameful new test which discriminates against many seriously sick and disabled claimants including, for example, blind people with guide dogs.

'Care Home Kids'....Neil Morrissey braves his past

2011-03-28T22:04:00.006+01:00

Just finished watching Part 1 of 'Care Home Kids'(Beeb 4). It focussed mainly on Neil Morrissey wanting to find out why he and his brother ended up in care but as his investigations unravelled, he met up with several other people who had been either in the same care home as he had or the one his brother had been sent to.

He seems to have got off quite lightly, and that sounds almost like he shouldn't have...what I mean is thankfully, he didn't go through what many other children had to because, it is clear from what other people in the programme were saying, that the levels of abuse (both physically and mentally) were off the scale. I can never get my head round why the most uncaring and brutal of people seem to be in positions of great power over children..and how that is allowed to continue. Certainly back in the 70's and 80's abuse seems to have been rife in childrens' care homes in the UK.

Hmmm...got so many (bad) feelings running around me now is hard to keep any focus on this but what seems to be the biggest concern for Neil Morrissy is finding out if his brother (no longer alive)suffered the horrors that other children in that specific care home (think it was called 'Riverside') did. He says his bother never mentioned anything like that on the rare visits home, they both shared. However, I think that is more a testament to the 'closetted' environment he was kept in and maybe an early understanding he got that children in care homes were not valued in by anyone (including councils, governments, the media and society at large).

In the second programme (same time, same channel..next week) he, Neil, will be looking at modern care homes to see what has changed, if anything, for the better and what happens when the obligatory stay at care homes ends and teenagers are no longer the responsibility of the care home. As in what help, if any, is there and where they go from care.

I think this programme warranted a higher priority than it was given. I am not poo-pooing Beeb 4 but this is such a serious issue...it is so important within modern society and for people who have been, or are still in care homes, that it should be shown on BBC 1. We need to keep this out of the closet and keep making it main stream!!!

Just checked....the next showing is 31 March, Beeb 2, 9.00 pm

"Look Whose Talking" (now)

2011-03-28T16:55:00.002+01:00

Have just responded (on Facebook) to Broken of Britain's comment about Ed Milliband..and yeah, okay, I got his name wrong last time. Shows what great impact this man has had on my thinking that!!!!

Seems he is being attacked for speaking at the protests that took place in London on Saturday. Before I write anything further, want to give out maximum respect to those who attended (those that could) and showed they cared about what is being done to this country. I gather there was alot of virtual protesting going on too (by those who, like me, were unable to attend in person). Fair play to them as well.

I couldn't participate on the day as I had my father home and he needs pretty constant monitoring. He is still apt to trip/fall over. What with that, a malfunctioning hair dye that took lumps of skin off me scalp and left me feeling very nauseus ...and a trip to the zoo with Em (which was kind of her and I am only sorry that I was too tired to fully appreciate the wonderful company and beautiful animals there)..am slaughtered..and heavy sedated here.

Anyway, back to Ed Milliband. I don't have a problem with him speaking at a protest rally. What I have a problem with is how late in the day he has left it to try and make any kind of stand. I thought he was actually planning to rest on his laurels with high possibility of Labour being voted into government in 4 years time.

So he went and he spoke...and it amounted to "Labour would be making cuts but not such severe ones". Do I believe it? I have my doubts...based on fact that it was the previous Labour Government that bought ATOS onto the scene. Yep, The Coalition may be using this organisation to maximum effect in regards to hammering the disabled of Britain but the Labour Party opened the door and let ATOS in!!!

The seeds of the brutalisation of disabled people were planted by the Labour Party!!!!

From where I sit what I gather is that The Labour Party, with Mr Milliband at the helm, need to be more honest about what they would be doing if they were in government now...and what, if anything, their elected MP's are doing NOW to stop the damage being done.

What this country needs is strong opposition parties

2011-03-21T19:18:00.004Z

What it's got is David Milliband and although I think The Green Party are doing their best (well in certain aspects of their counter arguments)they are so few in numbers they get drowned out by the 'guffawing baffoons'.

Was it Dennis Healey, when asked about his opposite number's responses to his speech said "It was like being mawled by a sheep". That is what Cameron must think of Milliband cos that is what I think of him!!!

Yep, this country is fxcked...unless the public really do get so twatted off by what is being done to them that they/we take matters into their/our own hands. Fair play to the students and now the Doctors for saying "Shove it" but it takes a whole lot more....the masses.... to actually think like that and act on it.

Will it happen? It could but the British are really good at whining in corners and at each other and then rushing home in case they miss the latest episode of 'Easternderdale Street', 'X Factor Rejects Come Dine With Me Special For Not So Comic Relief', 'All Life Begins and Ends in Essex' and my personal fav 'My Big Fat Greek Yoghurt' (showing the many ways you can transform said yoghurt into a dining extravaganza).

Yep, this country is fxcked alright!!!!

S'use subtitles...was only original vid I could get, without all advertising junk thrown in.

And South Essex Partnership Trust wonders why it is the most failing trust in the region

2011-03-21T18:39:00.004Z

The week after Minister for Health says the most complaints in regards to the National Health Service come from those using mental health services, I was not surprised to here that the Bedfordshire section of South Essex Partnerships Trust is the most failing trust in the region. What surprises me is that it is not the most failing Trust in the UK. God help (like that is ever going to happen) those people quote "served by" unquote that Trust!!

Below letter I sent to my MP....speaks for itself

Dear Mr Selous

I cannot believe that I am having to write to you again, nor does it give me any satisfaction doing so, but due to continual inefficencies and lack of appropriate communications between South Essex Partnership Trust and Central Bedfordshire Council I feel I have no choice but to write to you.

During late Autumn of 2010, I had a CPA review with Dr........ at Crombie House. During this meeting I explained that 3 hours per week of my personal assistant's time (which was being payed for through a Direct Payment) was not enough to ensure that I got the support that I needed when I needed it. For clarification what I asked for was an additional 3 hours (of personal assistant's time) and a payment specifically allocated to pay for personal assistant to attend therapeutic activities such as swimming, yoga or other wellbeing activities that promoted social inclusion and better mental health for myself.

On the day of the panel meeting my care co-ordinator was on annual leave and I was phoned up on the day by a locum care co-ordinator who told me she was about to attend the panel meeting and could I confirm what it was that was being sought (via the application already provided to the panel). I explained this to her and later on in the day, she rang me to back to say the panel refused the additional requests placed in the application but would pay for 3 hours of personnal assistant's time for 1 more year. She also stated that at the end of the year, the panel expected me to be fully independant. At the time I was quite disturbed by the last statement but relieved that, at least, I was going to get 1 more year of my personnal assistant's time.

I asked the locum care co-ordinator to get me a copy of my updated CPA review, in which the proposal to reapply for additional support through the Direct Payment was discussed as I wanted to go through this and ensure that there was in writing what was agreed at the meeting. I am still waiting for a copy of this paperwork.

I am also still waiting, although I asked both the locum care co-ordinator and my existing care co-ordinator who I saw last month and spoke to last week, for a copy of the formal paperwork from the panel meeting which confirms what was agreed at that metting in December. My care co-ordinator has advised me that nothing was forwarded from Central Bedfordshire Council and he was still awaiting to here back from the council having sent them an email asking for a copy of the paperwork.

I have spoken to someone at the Direct Payment's office, although it was an administrator. I have not been able to get in contact with anyone senior and would not know who to contact if I did. This lady advised me that all Direct Payments are for 2 year periods of time and she couldn't understand why I had not been informed of this. To be honest, Mr Selous, I have been informed of very little and most of the information needed I have had to ask for, rather than be provided with.

I no longer understand 1) How long my existing payment is actually for be it 1 or 2 years 2) what has happened to the formal paperwork from the panel meeting in December and my CPA review in Autumn 3) why I have to do all the work trying to manage people when I am seeking very specific support due to my illness, which should not warrant me time and time again having to keep chasing people up and getting nowhere. Thankfully, I have a level of intelligence (and I don't mean this disrepectfully to anyone) which means I do get the overall picture of organisations that are not communicating effectively with each other or their clients/patients and do not seem to care either. However, I am now having to take more medication to stop myself going over the edge. I am caught in a very vicious cycle..and I seek your help in order to, at least, get me copies of paperwork relevant to my support (as per agreements and legal requirements) and to endeavour as best as you can to get government organisations to do their jobs properly because if this is what is happening to me, I can only imagine what is happening to other people who are ill and maybe less able to express their needs and frustrations as I do.

Yours sincerely

Dispatches - Britain's Secret Fat Cats

2011-03-14T19:39:00.002Z

8.00 pm, Channel 4, tonight.

Let's see who is actually getting the cream!!!!

Latest Letter to MP, who asked me to contact him if I had further need of him

2011-02-02T22:32:00.002Z

Dear MP

Thank you for your reply to the copy of the email I sent to important person at local council. I know there were ongoing issues for 2 year's prior to my father going into residential care. These included misdiagnosis by a psychiatrist, lack of appropriate support from both mental health services and social services, which I believe led to his suicide attempt.

During this time and up until autumn of last year, my father was in a hell of a state and I know that you were aware of the impact this had on my mental health. I am grateful that my father was, eventually and with my constant fighting for his wellbeing to be given priority, placed in residential care and now seems to have a combination of psychiatric medications which have lifted his mood to a point where he is less miserable and more able to interact with people within the care home and myself and my daughter.

However, I am not satisfied that any lessons have been learnt by the MH Trust, who having showed me the report they did in regards to an investigation I pressed for..refused to let me have a copy.

My main concern now is that what we have are layers of bureaucracy (both within MH and Social Services) that cover themselves...rather than acknowledge the damage the lack of appropriate intervention, when needed, and lack of providing transparent and honest information, when requested, does not only to people in crisis but also to the trust that was building between patients and the people designated to provide care to them.

I think this is an on-going problem. I have requested information...and very specific information in regards to decisions made about both mine and my father's care (viz a vie Direct Payments agreements and Residential Care agreements made at panel level). Either the information has taken months to be provided or has not been provided at all. Which has led me to believe that either people have acted neglectfully or deliberately have avoided providing the information, that was sought.

I am sure you appreciate how frustrating this is for me. I am a person who needs to know why things are how they are and to be provided the truth...as does my father. In fact, my father becomes quite paranoid if he thinks information is being kept from him.

I am not sure that you can do anything to change this. However, as a government, I believe the party you represent can do alot to enforce changes within existing care services and I don't mean to the detriment of them but to get rid of the ludicrous levels of bureaucracy, the with-holding of significant information to patients and to make these services more transparent and responsive to patient needs.

For your information, I have not heard back from the important person at the local council, since I sent the last email to him and this is nothing new for me, when dealing with public services. I think it is a case of only responding if they have and/or are legally obliged to.

Yours sincerely

Mandy Lawrence

My daughter got home safe

2010-12-19T02:22:00.002Z

In the midst of utter waste of space that is trying to piece myself back together only to fall apart, or pull myself apart, there is something real and worthwhile that happened today.

My daughter, who is covering for a manager on annual leave, had to travel a ways in the snow. My achievement of the day, such as it was, was to get to the care home crimbo buffet, aided by Craig. He is very helpful (at times) but mixed in with that is his jealousy, paranoia and come downs off alcohol. Both of us know it is a relationship based on needs (both of ours)..every once in a while I dare to be honest about that and another game starts, manipulation, threats...and other really pantsy stuff that does neither of us any good. Anyway, whilst trying to be all things to everyone around me, doing an adequate enough job (well I thought so)...until I got home and gave my cat some fusses. Fekk, you'd have thought I had ignored Craig all day. As I was close to ab dab point I said "Maybe we need to talk now...cos there's things need sorting out". Answer "No, you don't know how lonely I get" and I don't. I understand loneliness but I can't know how lonely anyone else gets. I don't know what actually goes on in their heads and more so I am too tired to double guess.

The conversation ended there. He sulked for most of rest of the night. I twisted myself into wondering how I make any of this positive...apart from packing bags and fekking off. Not realistic cos would be taking me with me!!!! So it was put up and shut up until I could get away to my bedroom...and some breathing space.

Anyway, that is all the negative crap and yep, I deserve it because I haven't got the bollocks to be totally alone.

The good stuff is that daughter got to and from work. She is safe and I am relieved. And if I should compare myself realistically to anyone it should be her because she is getting on and doing what she has to do and I admire her.

Confused ramblings about MH care and why it hurts my head even more

2010-12-15T19:41:00.002Z

Don't know where this is going to go but it's a case of I've started so I'll finish..somewhere.

The good news is I am getting a Direct Payment for another year. When my care co-ordinator put the paperwork together (and from what I saw, really well) I was sort of optimistic. Well, that was one stage of the process done and dusted. Then he went on 4 week's leave and a social worker was covering for him...then he went on sick leave, came back for a week and is back on sick leave again.

Was woken by a phone call, yesterday, from the lady who is covering for the social worker, covering for my care co-ordinator, to tell me she was at the panel meeting to discuss the application and (in a nutshell) what did it mean? DOH! DOH! DOH! I tried to explain...through the total fugg that is my brain, first thing in the morning, but don't think I made a good job of it. All I said was "Do your best and good luck"??????????????????

The application was for an extension of 6 hours and payment for care lady to attend activities with me.

What did I expect? Nothing! I know that councils have to make massive cuts, benefits are to be reduced to fekk knows what and quite how that will equate to living costs....AND the mentally ill are the hidden disabled. As in, if you can't actually see it, it doesn't exist. Well...for those who don't suffer it. Not dissing any other disabled group but is not like ATOS are going to be able to get inside my head and go "Fekk, it's a mess in there".

Anyway, I digress, what I have got is another year of the same payment. The lady covering social worker, covering care co-ordinator said the panel have said "How you use it is up to you but you have to fit that into the payment"..£21 per week. So if I want care lady to attend activities with me, I guess I have to save up enough hours so that I can cover costs and paying for her time. Nosebleed cos it may well mean no weeks of seeing her to then pay for a course of yoga or tai chi. Well have to jiggle it about. Will think on that after the festive farce.

She also told me I got the payment because I was not so reliant on MH services??? Have reflected on that. 2 things that affect that 1) The successive STR workers that gave me support directly from CMHT have been scrapped 2) When I try and make contact with care co-ordinator, or recently social worker covering for them...they take ages to get back in touch with me or are on sick leave.

Not sure what to make of that either in respect of emergency appointment I had with shrink in October, where new meds were tried. Maybe that is just a red herring in amongst all the crap in my head.

It could be paranoia but to me is like MH services are being dismantled (maybe bit by bit and they hope nobody actually notices!!!!!!!!!!!)

The lady covering etc etc blah fucking blah informed me that the panel EXPECT me to be living independantly at the end of this Direct Payment. I assume that means independantly of any support services. That could be because there won't be any left by then. I don't know. I do know that I live on my own and running my home (well the council's home I live in)..it's pretty scrappy round here. Not all ship shape and Bristol fashion in fact it is pretty run down..DIY not a strong point and housework gets done as and when mood and energy levels permit.I am surviving (for now) with intermittent okay times and lots of anxt ridden stressed times.

Friend rang me today to say that GPs are now going to take control of care across the board. Err...WTF does that mean for people with mental illness? Will GPs be expected to provide MH services? If so, wonder what the GPs think about that? Personally, I can't envisage them being able to cover both a person's mental and physical health within a 5-10 consultation meeting but maybe I have got wrong end of the stick. Hands up...am bewildered by most things that are going on...

My bottom line is that I will hack what I can hack for as long as I can hack it and then the get out clause will be applied. Sounds meladramatic. Actually, it is a bit of a relief to think that I can have some control when it comes to ending this torment (both internal and external).

As for those people who believe it is selfish to take your own life. I have thought about this alot, in relation to myself. When my daughter was younger, she was one of the reasons I kept going.

Times change, she has changed. She is still awesome. However, she is actually living a really independant life. She's all grown up and doesn't need me anymore. In fact, I know I am more of a burden in her life now than I was then. I am more miserable, less able to hide my hurt and anger at what is happening.

All the hopes I had in the past that there would be a medication that could balance me out are gone (through having tried them) and I am reliant on benzos. If things were not going to get worse, I would think on coming off them but with what is to come, I would rather take them and have some relief...some calms within the storms.

I know, I am pessimistic person. I think that is based on my view of what is real and really happening...and just because the latest big buzz is around resilience that doesn't mean I can become more resilient than I have had to be to survive this far.

Ah bollox.

Just who are the police protecting and why are the media becoming such suck arses?

2010-12-14T13:36:00.003Z

This is footage of Jodie McIntyre being dragged from their wheelchair by the police during recent protests.

When I saw this I had to ask "Why?". What possible threat could Mr McIntyre pose to a group of policeman?

I didn't watch the news yesterday. I have been deliberately avoiding it, although by doing that I am avoiding things like the interview BBC News did with Mr McIntyre. I have been told it was biased and that he was made to look like a villain. Well, if someone in a wheelchair being pulled about by the police is an act of crime then nobody is safe to do anything without it being seen as deviant behaviour (except the police).

I dont' usually bad mouth the police force, although I still think the shooting of Jean Charles de Menenez was an utter cock up on policing front (and the man died uneccesarily) because my experience of dealing with them has been that they have been obliging, kind and actually found my Dad when he was wandering around the Yorkshire Moors in a state of mental distress. However, I fear their prime directive is to serve the government rather than serve the public.

And what next: Water Canons, calling the army in to every protest? The British Government condemned China over the student protests in Tiananmen square, in 1989

but now the government labels all UK protestors as rioters (and the media follow suit) and the police are to be their henchmen. It won't be long before the state starts controlling everything.

Disabled woman beaten up on bus while everyone just watches

2010-12-09T22:31:00.000Z

THE disabled mum beaten up in a pram rage attack on a crowded bus told yesterday of her disgust that no one tried to help her.

Nova Willet, 36, said fellow passengers ignored her cries for help and some even laughed as she was beaten unconscious by a foul-mouthed thug. She felt “sickened” nobody intervened when she was punched and kicked in front of her three-year-old daughter.

They just watched as she screamed, “Help… he’s trying to kill me!” while the yob repeatedly smashed her head on the floor.

Her attacker, who was with two small children, laid into her then tried to drag her off the bus.

He leaned over her bloodied face and snarled: “I’m going to f****** kill you.” Nova, who has debilitating auto-immune disease lupus, said: “People don’t want to get involved. The community spirit just isn’t there any more.”

She lost a tooth and suffered internal bleeding after the attack in which her 32-year-old husband was also battered.

Advertisement - article continues below »

Nova decided speak out in an effort to catch the man who lashed out on the No 85 in Kingston, Surrey, after their baby buggies became entangled. She said: “I smiled and said, ‘Sorry can you get through?’ To which I got abuse. He said, ‘You’re going to have to move your buggy’.”

When she explained she couldn’t move he unleashed a torrent of abuse. The man, who had a baby and a girl of about six with him, then launched the brutal attack.

Nova said: “He threw me all over the bus and was whacking my head against the hand rail. He was punching me in the head and kicking me. When I fell he started ramming my head into the floor. I remember my husband trying to pull him off and my daughter screaming. But nobody on the bus tried to help in any way.”

Nova thought she had been stabbed after her glasses were smashed into her face.

She said: “There was a time when people would not have stood by and allowed this to happen.”

Anyone with information about the attacker should call Kingston police on 020 8247 4946.

Read more: http://www.mirror.co.uk/news/top-stories/2010/12/08/disabled-mum-beaten-unconscious-in-pram-rage-attack-tells-how-bus-passengers-ignored-her-pleas-115875-22768468/#ixzz17eltOuF3

Is it pessimism or realism that makes me question the latest Govt consultation?

2010-12-08T12:44:00.003Z

I have just printed off the easy read version of the government consulation on 'Changing Disability Living Allowance'.

The government site is below.. and sorry I can't do a direct link. I have been shown how to, several times, but always forget :<(

http://www.dwp.gov.uk/consultations/2010/dla-reform.shtml

I do intend to respond and am grateful that the cut off date is February because I am in no fit state to respond right now.

Am going to attempt to play at normal human (best as) because it is my daughter's birthday tomorrow and our quality time to 'celebrate' is later today. Fekk, it is so hard to keep up with the jollies.

Wish I was more 'Grace under pressure' than her ugly sister 'Ava panic stricken'.

Anyway, before I take another benzo and hope I settle...I can't help wondering if it is all just a faitez complis. That could have wider meaning than specifically talking about this consultation.

Because I have believed that it is worth people having their say and being given opportunities to have their say, I have been involved in consultations before.

Biggest one..in regards to personal involvement was the Herts and Beds 'Investing in Your Mental Health' consultation that took place a few years back. As a service user rep (and I look back on that time as a total waste of my time) I was involved in meeting with other MH service users and gauging their views on the consultation paper, what it meant to them and what they actually wanted.

In the May, the SU group was given the deadline end of September to get views back. So all through the summer myself, and 2 other reps, organised meetings across the county. It wasn't the easiest of things to be involved in (my travel phobia meant I had to be escorted) but by early September all the meetings had been carried out. Due to some management issues and my desire to do things fairly, I ended up typing the response, getting coppies back to the people we met and other SU reps..to ensure I hadn't missed anything and was staying true to what people had said.

The response did get back to the Strategic Health Authority in time. I later presented the responses at a mini conference type thing. Not only do I hate public speaking but loathe it with a passion but, as ever, no one else wanted to or was available.

What were the actual outcomes of the consultation? 'Investing in Your Mental Health' ...as a project..was scrapped...the project lead (head of MH in Strategic Health Authority) moved sideways and it was never heard of again. Apart from me saying what a criminal waste of time it was..particularly for those of us who took it seriously.

I can't help thinking "Here we go again". There is no such thing as democracy and what point actually raising concerns when the decisions have already been made?

Gonna put the paperwork to one side and rethink this. My expectations have been raised in the past, I have believed in democracy and, ultimately, been lied to and totally disillusioned. :<(

In case anyone feels discriminated again...

2010-12-08T11:13:00.002Z

In the words of the 'Disney Corporation' ..."It's a small world after all"

For my Antipodean visitor

2010-12-08T10:55:00.001Z

The Big Society just gets bigger and bigger. Ha! Ha! Ha!

Who will help the homeless?

2010-12-07T11:55:00.002Z

I try, really hard, not to watch the news. It is not like I need any more reasons to feel utterly miserable. However, I stayed with Craig last night.

There is another more personal story in here but I am so angry with my inability to continue to perform at a level near normality at present. Yes, I know that mental illness renders people incapable (varying degrees) to lead normal lives and certainly not without alot of help. I can imagine the recovery natzis insisting that there are many people with mental illness leading normal leaves. I would question how ill they are in the first place? and what levels of support (where it comes from too) are in place for them.

Anyway, my battles with my illness aside...I was in tears yesterday when watching the local news, at Craig's.

Two YMCA centres in Cambridge have been closed down due to lack of financial support. I don't suppose Cambridge is the only place this is happening either. It is the thinnest edge of the wedge and, not surprisingly, assistance to the most vulnerable is being shaved off first. These centres provided essential support for homeless people and now these people will be left to fend for themselves and I can only imagine (although expect that there may well come a time when I will be forced to join them) what it is like to be living out on the streets and at the mercy of the savage winter weather being experienced across the UK at this time.

My heart goes out to them and I am acutely aware that I have so much more in common with them than the people who are taking away any support they have. Very sad :<(

A Condundrum over Control Issues in Care Home

2010-11-27T23:50:00.004Z

The conundrum is how I deal with an incident that happened today.

Before I explain, best as, have to state that the person concerned has previously been, what I consider to be, abrupt and even a bit mean in the way they speak to residents.

On reflection, maybe I should have said something before but I have let these things go....actually I should have said something before.

I intend to take action now. I am just not quite sure what action to take.

One of the residents has got into the habit of hurling themselves, head first, at the floor. OK, that is childish behaviour and it isn't doing them any favours but looking at it from a humanistic point of view,they are very poorly, have little control over their lives and to large degree over the function of their body. They are striving to get attention and clearly, whatever attention they are getting (which from my observations, when there, is very little but I don't see other rezzies getting any more) is not enough.

Whilst I was there today, this person, kept trying to get up off their chair. On a couple of occasions I helped, such as I can, and on other occasions a staff member came to help out.

Not long after the staff member left the room, the resident went head first to the floor. I cried out for staff to attend and went over to sit with the resident. Both the staff members on duty rushed in. The most senior's first actions were to tell the resident off (in front of everyone in the room) and then storm out to get the contraption (apologies don't know correct term) that will aid them to lift the resident off the floor.

I got a cushion and placed it under the rezzie's head and stroked their shoulder and tried to reassure them. The other member of staff stood there a bit dumbstruck until the senior came back.

Once settled into the chair, the senior went off to notify next of kin and ring and ambulance (fair enough). I sat and stroked rezzie's hand and chatted to him whilst the other staff member kept dabbing a big bump that appeared over their right eye with a cloth. Can't for the life of me think why they did that but I guess it was doing something.

What infuriated me was the total lack of respect given to the resident. In fact they were treated like a naughty school kid that should be scolded and the fact that this was done with an audience. If that is not over controlling, well I am a born again Liberal Voter (and there's fat chance of that happening).

At the time, my priority (actually instinct) was to provide TLC and as much reassurance as I could until the paramedics arrived but the more I think about this the more angry I am becoming.

I can go about this one of two ways or maybe both. Talk to the person, one to one and tell them what I think of how they handled that situation and/or speak to the manager. I think it would be only fair to talk to the person first. I don't relish the idea and I imagine it could get quite heated but what happened has to be challenged. I think it has to be challenged because if they carry on, and are allowed to carry on talking to residents (fellow human beings), like they are pieces of trash....and in a leadership role...it will continue to breed fear and well fekk knows where it will end but no care home should be run on fear. I don't think anywhere should be run on fear. Sadly it seems to be becoming the norm, these days.

I think I should talk to the manager too. Maybe they are aware of this staff member's behaviour and have turned a blind eye or, maybe, they really don't know how this person behaves. Either way, they need to be confronted with the truth and then to decide how they will deal with it.

I know there is a risk of upsetting the apple cart as it is but the apple cart could soon turn very sour if left as is. Hmmm...ultimately, I have to follow what my morals and emotions are telling me and they are telling me "It just ain't right".

Got to think of best way to plan what I am going to say but, in spite of what certain anonymous people think of me, usually (particularly in major life shit and certainly when trying to help others) following gut reaction turns out best....Hoping it turns out for the best this time. Hope.....possibly the naeivist form of self deception but sometimes it is all I got.

and I really hope it doesn't get to point where I feel I have to go to a higher authority. 1) Because if things can be sorted for the better in situe that has to be best way 2) Higher authorities are usually run by impotent wind bags with no desire or clowt to do anything other than give lip service, cover other people's backsides and tick boxes.

One more thing, I don't think 2 members of staff are able to properly look after all the residents in the home so there is a staffing issue and that, as is usually the case, all boils down to money!!!

Ho fucking hum!!!!

Base...how low can you go?

2010-11-27T00:33:00.003Z

Title just popped into my head so I put it up.

Arrrrrgh! Have had few weeks of depression, mixed with cold virus symptoms that seemed to keep appearing and disappearing (no obvious reason, migraines etc. Midweek had this freaky manic up thing. I don't much like that either. Is not euphoric or care free. It is a bit wild and lary and not easy to control. In between all this had impulses in middle of night to go walkies. All except one night, at Craig's, managed to curb it. That night I was wandering around early hours, trying to find my friend's house. Fekk knows why? Didn't really want to wake her up. I tried buzzing one door bell..got spooked and walked off. Thanks to another friend being on end of phone, and them talking sense to me, called a taxi and went home.

Since then, I haven't had one good night's sleep. I am sure there are insomniacs out there that would think me a lucky bitch for getting any good night's sleep...but, usually aided by loz, I can zonk through a night, no sweat.

Well, don't know about other people with Bi-polar but if I don't get proper sleep, I start getting iller and that is what has been happening.

I am drained all day and want to sleep ...or not feel so drained!!! At night, I am wide awake. Mostly contemplating running away. I used to do that sort of thing when younger, without any contemplation. It was a more care free state of being then. Now, I just feel total entrapment....bit like sitting in some metaphorical cell (real enough to me) on death row, waiting to be sent into the gas chamber.

Normally for me it is 3-4 bad days and a 3-4 coping days (coping and doing positive things..as in things I enjoy)....now I enjoy very little any day. Even chocolate doesn't touch me. I know, it must be serious!!!

The only real difference a day brings is some new physical ailment to be dealing with. I know depression and physical illness go together. Immune system gets wham'od and the viruses send a round robin to all their pals.

Even my care co-ordinator coming up trumps wasn't enough to lift me any higher than level of coffee table. He bought round a file load of paperwork (yak) but it was relevant. Certainly the proposal for continued Direct Payment. I actually hugged him and told him I was bowled over by it, cos, from where I sat, it all looked in order and relevant to my needs. One less thing to fret about. Okay, so next stage the All Powerful Panel Meeting...and I am not expecting anything so if they say "No go" it will be no surprise. If they say "Yes" it will mean something positive but right now am too low to appreciate it. Thought of going outside...even just to local shops freaking me out and Craig is having to accompany me to see Dad because I feel like I am going to collapse all the time, or bawl or make a twat of meself in front of other vulnerable people who would be shaken and stirred up if I do.

Every winter it's bad...I am not sure if it is worse this year...last year I had been fighting 2 year battle with services to give Dad proper support. Culminating in his suicide attempt, 3 month stay in acute care and finally transferred to the care home, which he is now settled nicely into and making progress. I don't use the word recovery. It isn't recovery...it is some sort of coming back out of his shell....secure that he is safe, he is 're-becoming' (to a certain extent) Dad I knew, again.

I think it must be a case of every winter is bad...and every winter I am older..and every year one load of crap gets replaced with another load of crap. Scary times do not make for settled, calm and collected Bi-polars. Well, not this one, for sure.

Plus gotta cancel my respite care cos there is no one to look after Suki Cat and Suki Cat is too old, too frail and too set in her ways to be stuck in a cattery.

Know I said it hundreds of times but I wish I was a bear...and I could find a big tree (with big enough hole) for me to curl up in, hibernate and awake in spring. Sure there will still be crap to be dealing with but there will be sun and flowers, blossoming trees and lighter days. 4 months...right now that is too long, by 3 months and 31 days!!!!!!!

Ummmm.....If it was simply a case of teaching granny to suck eggs

2010-11-26T10:38:00.006Z

how comes most people have never even seen granny sucking eggs?

Flippancy has it's uses, especially when Nanny is back with their guide on how to survive 'The Festive Season':

1. Drink sensibly

A bottle a day should keep you suitably inebriated to endure it

2. Eat well

Nanny recommends a light salad, followed by a yoghurt and a piece of fruit.

3. Be active

Yep, even if that means forcing yourself out of bed. You could even try to do the housework that has been put on hold for a few months.

4. Get involved

For those living alone, go knocking on neighbour's doors and ask them if you can join in their festivities.

5. Relax

Make yourself a cup of tea, do some deep breathing exercises, have a bath and then hit the benzos. You really should not be bothering the Crisis Team at this time of year and ruining their fun.

6. Sleep

If only eh? But if push comes to shove try a mix of Tip No 1 and Tip No 5

And here's Nanny's link http://www.mhf.org.uk/media/news-releases/news-releases-2010/22-november-2010b/

Telling it how it is

2010-11-23T12:59:00.003Z

I been doing that for years and still I get the "Get over yourself" Brigade insisting that some collective we must rally on and conquer our illness, most probably because it makes them feel better about themselves.

I am sure that anyone with an on-going and utterly debilitating mental illness will know that it takes extra effort to do just about anything and life is exhuasting enough without added layers of guilt from other people to have to deal with AND if I could have recovered, I wouldn't still be at the mercy of this fucking disorder.

Best intentions or deliberate bullying doesn't make me feel any better and I am taking this opportunity to tell the likes of the Recovery Natzis to "Fucking well, fuck the fuck off"

END OF!!!!!!!!

Migraines and Mind fucks

2010-11-17T14:04:00.002Z

I feel like saying last post I put up was a total waste of time. It most probably was but it was where I was at, then.

Now, I am feeling/thinking (such as brain can hack) like...it was all about theorising rather than realising how dire things are going to get without any real care for the people on the butt end of it. In that regard it led to nothing new!!!

Ho hum! I keep trying to access places where I can make some positive difference and coming back into myself.

This isn't just frustration about that, it's the joys of womanhood dragging me back into the bog. Yeh! I know all women suffer (varying degrees) but I get floored every time and the migraines trigger one after the other. Dropped migraine meds and 2 loz. Hopefully, will feel more comfortable soon, at least relaxed enough to sleep.

There is progress of sorts. A minor operation that can be done to remove lining of womb and hence no more periods. Had letter from consultant saying I have a 'consultation' meeting scheduled for spring. I need to get my act together (more so now I have printer ink) and write back saying at the meeting I want to discuss the operation, and basically go for it.

Rallied through (sort of) meeting with care co-ordinator and a social worker. Won't say too much about why social worker was there but based on the meeting, I am glad he was and have another meeting scheduled with him tomorrow to try and move forward with Direct Payments. Sort outstanding issues out and re-apply for more hours. Not sure where it will lead. Times being as they are and attitudes towards the sick (surpluss to requirement) it may turn out to be nothing but, realistically, I need more hours of my care lady's time.

Thankfully, my friend's son is going to get my prescription for me today because in the physical state I am in, aggravating mental state, I wouldn't make it.

It's time for bed and I just hope I get a long sleep. Not so much to recharge batteries as to shut down and shut it all out for a while.

Some healthy debate (at last)

2010-11-16T21:11:00.005Z

I have spent some time but maybe not enough, venturing around blogland to gauge how people are coping and what their views are, in regards to what is to come as part of reforming the welfare state (whatever that actually turns out to be).

There is, understandably, a lot of fear out there and little hope...but I could just be reading specific blogs and not getting a generalised view (if there is such a thing).

A friend sent me a link to a blog called 'Labour List' and the specific posting I was sent is 'Coalition 'welfare' policy - back to the workhouse'. Remember doing a blog posting myself, few years back, saying this is what I fear would happen (workhouses for the mentally ill) and believed would happen at some point in not too distant future...anyway, I am digressing.

What I like about this posting (apart from it's content) is the level of debate is has triggered. Some of it, maybe, not so much debate as disagreement but overall it makes for something healthier/good for me than just 'ranting' (as I am apt to do) or going round in circles with my own view and nothing to bounce it off. I do discuss things with friends and fam (my daughter) but, I think, it is more objective...make that more indepth/broader....to get views from people not personally involved with me.

I recommend people read the posting and the responses because, can only speak for myself here, I am finding out information I did not know before but I am also seeing different perspectives...more importantly it is healthy to see something like real debating going on rather than reinforcing or being part of a hysteria raising cycle/circle.

It could just be me, locked up in MandLand, and sometimes too trapped by the terror or too angry to absorb anything properly because I am too busy wanting to get back at the 'bad guys and girls' (Angry one woman mob with nowhere to go) but I have not yet come across a blog where I have seen debating between people of differing opions going on about a subject that is so important...something that it is going to change the very nature of our society and, as yet, I have yet to be shown it likely to be anything other than brutal and harsh for those of us who can't cope with mainstream due to illness/es.

I will be posting on that blog (working on composing myself appropriately beforehand...which might fail and I will just burst in with usual off top of head stuff) but I wanted to give people the opportunity to have a look at it for themselves and make up their own minds about it.

Link to "Coalition ‘welfare’ policy: back to the workhouse"

Chairman of Motability signed up for cuts

2010-11-16T10:22:00.003Z

Neil Johnson was one of many businessmen who signed a letter supporting the financial cuts to public services and benefits for disabled people.

"Motability Operations is a not-for-profit company that runs the Motability Car Scheme, and more recently, the Powered Wheelchair and Scooter Scheme." It is also the largest fleet operator in the UK and the biggest supplier of used cars to the trade, it is owned by the major banks: Barclays Bank plc, Lloyds Group plc, HSBC Bank plc and Royal Bank of Scotland plc.

Johnson is also chairman of Umeco, a company that produces weapons and Hornby (that lovely train set company).

I think all the above speaks for itself.

Will Jeremy Paxman Do The Honourable Thing and Resign from University Challenge

2010-11-11T23:07:00.003Z

After challenging.... let's be honest here ... interrogating Claire Solomon on her role in the disruptive behaviour of fellow students at Wednesday's protest at Millbank Tower, I have to wonder at his suitability as compere of a programme specifically aimed at and including University Students.

Claire Solomon made it clear that she was not involved in violence and his representation of her, detracted from the real issues students are facing.

Paxman continued to grill her, about her age, whether she was a student, how long she had been studying, if she was taking gap leave and how long for etc etc etc. It isn't just about what you ask but why and how you ask it and the tone in which it comes across, which was accusatory.

Simon Hughes, was part of the interview, he made a point of glaring at Clare and then turning away from her and focussing on NUS Aaron Porter, whose view was that throwing the extinguisher off the roof was dangerous (like nobody else would know that) but generally he supported the action by the students.

Hughes steamed into Porter, saying that the NUS president had encited fellow students to hunt down Lib Dem MPs who'd signed the original pledge not to raise student fees and Hughes exploited that as if there had been some violent intent behind Poynter's words. Poynter, flabbegasted by this, insisted that he did not say that. However, Hughes refused to let him talk any further and says that the electorate decided that there wasn't a majority so it wasn't the Lib Dems fault that the fees are going to go up. Basically, blaming the Tories for Lib Dem subserviance.

What I got from that interview was that Paxman and Hughes gave little opportunity for the NUS President and student to put their views across and bullied them when they tried to have their say.

I used to like watching 'Newsnight' because Paxman used to put politicians on the spot and try and get them to tell the truth. Now he comes across as another pack dog, doing the Government's bidding!!!!!

I wouldn't so much say it's 'Shutter Island' as Shutter Shed

2010-11-09T18:06:00.002Z

Yep...I have seen the film. Not sure I have seen the light!!! As in the "You really must take responsibility for your own actions..even if I am not" league!!

What I got from the film was that it was pretty damn good. Leonardo Di (never quite sure how to spell his name) acted his part brilliantly. No surprise for me cos I really rate him.

I liked the way it reeled me in, not sure till quite a ways into the film that the main character is in some kind of psychotic self denial. I did clock early on that he was carrying a lot of psychological and emotional baggage but I thought it might have been to do with interrogation. As in he having been involved in interrogating Natzis and then having to see first hand, the horrors of the holocaust (as an American Army man). Got that one wrong! Oopsie!

Was scared to bits by the Lighthouse (The grand finale of the Big Brother House) and the atmospherics got to me too. I felt alot of the supsense that went with 'Blair Witch Project' only the quality of this film was heaps better and more substantial.

I think, wherever there are gaps or uncertainties in films, people (me included) fill them in with what we want them to be. For example at the end of the film, my view is that he realises he has been in denial about his past, as well as the violent side of his character (although I am not sure if that violence was a pre-disposition or in direct response to his wife killing his children) and prefers the labotomy option to having to live with the reality of what he has experienced, done and feels. Craig (who watched film with me) thought that he hadn't got the remotest idea and still thought that it was all a conspiracy against him.

Am suddenly wondering what it was that prompted me to write this post. Well, I am getting sick to death of people and their social engineering/control talk...using the media to tell other people how they should be living their lives whilst in the next breath proclaiming themselves too sick. For what, to be taken seriously? Is that a kind of sickness? To think that you have authority and and the right to moral control but then to start saying that when it comes to them, they are 'exempt'? Is it a twisted belief that they can save people...or more that they are trying to save themselves at other people's expense? Whatever, I am highly scepticle of anyone who claims to be representative of me, whilst never actually asking me what I think, feel, experience (trying to super-impose what they believe I should be feeling etc on me). The reason this is so important now is that social engineering is much more of a reality and when it comes to responsibility.....I fear people will be made to be responsible for their illness (blamed for having illness) and when they don't cut it, in this brave new world...they will be subject to a different kind of labotomy. Extermination of a sorts...just like in the film. The guy didn't cut it...it was 2 strikes and out.

Big Brother, who on one hand is believing themselves generous and compassionate.... on the other...imposing their morality on someone to the point of extinction. Well, that was my take on the film and is my take on what is happening now with more to follow.

The propoganda seeds are being sown. We all belong in a Big Society. Big Brother has told us that. Now it is how society is manipulated to believe that there is an ideal type ...a uniform type...and only they belong. Faulty goods are not allowed (particularly with mental illness) and will be blamed, bullied and driven out (of their minds, communities and homes). Ultimately, mental illness will no longer exist..it will be those who can 'fit to type' and the mentally ill will be deviants who must be punished. Paranoid maybe? But time will tell.

As for the Shutter Shed. It's about me reality checking and downsizing accordingly. Metaphorically speaking and who knows what on the literal level.

I don't think it will be a case of even having 2 strikes. 1 strike and then fekked!!!

ESA not fit for purpose

2010-11-08T11:03:00.002Z

If you agree, as I do, that Employment Support Allowance has not been thought out properly and that the support mechanisms, job opportunities for those who can work (including flexible work which understands the erratic nature of severe mental illnesses)and actual understanding of how mental illness affects people period, please sign the petition at:

http://www.gopetition.com/petitions/esa-is-not-fit-for-purpose.html

One in 4 of us.....

2010-11-07T00:19:00.002Z

....can tell the difference between Stork and margarine.....and the rest are lying!!!!!

Direct Payments. A Tale of Utter Confusion on the part of the Professionals

2010-11-05T16:29:00.003Z

Viewers to this blog (bless your hearts and stamina) may remember that my ex care co-ordinator...in line with my care plan...put forward a proposal to Social Services in order for me to get a Direct Payment to help with issues around isolation, agoraphobia and depressive side of my illness.

That was Autumn 2009. Social Services agreed to fund me in December of the same year and I, eventually, got a back payment of £800 in May 2010 (in lieu of the months leading up to that point).

It took another 3 months due to MH Trust insisting I must use one of the care agencies recommended by them, only to later be informed that the care agencies they recommended do not provide the sort of support I needed (their words not mine) and me than having to (muchly supported by local Disability Resource Centre) go through process of employing a care lady (drafting job description/interviewing etc etc etc.

So, I have had 3 months of my care lady's time at 3 hours per week. Thankfully, I picked the right lady. She is brilliant. Empathetic, on time, flexible and friendly.

There are however, still a few outstanding issues such as

Central Bedfordshire Council, whom set deadlines for me to return expenditure paperwork to them but do not send me the paperwork to complete. Up until this month I had been photocopying forms and sending them back. To ensure I was adhering to their policies. However, I have been a bit strapped of late and can't afford printer ink...so the paperwork has not been returned and the file (I bought and organised to ensure everything was in its place is now devoid of some essential paperwork).

Not only are they incapable of keeping to their own policies but on the odd occasion I have needed to talk to them about things like "How come I still have £1,000 in my account and only 3 months left of my care lady's time?" along with "Could I use some of this money to pay for my care lady to attend Thai Chi classes with me?" I mean who is going to be working for somebody 3 hours per week and pay for themselves to do that? Not many people, me thinks. I have left messages on answerphones and, as yet, not one response!!!!

I am sure there are people thinking "How come this woman still has that amount of money" or "WTF is going on?" Well, firstly, I have stuck by what I thought was the original agreement of 6 months to pay for care support and secondly, I haven't got a damn clue what is going on anymore. Maybe, social services are providing the Direct Payment for a year. If so, then they should have formally written that into the agreement. Basically, I have spoken to a few people about this and their view is the council have totally lost the plot on this and are in a mess.

Anyway, Care Lady managed to hunt out 'Thai Chi' course starting on Monday. Centre needed enrolment fees by today. I rang council, no-one available to talk to me, rang Disability Resource Centre who told me it was up to Care Co-ordinator. Rang CMHT office..Care Co-ordinator, out...due back any minute....waited around for hour and then had to make executive decison to pay for care lady's enrolment fee from Direct Payment as Em only had a while to spare to take me to the centre (she is in the middle of moving into a flat share) and so it friggin' goes.

Care co-ordinator finally got back to me half hour back and is in agreement that part of the direct payment can and should be used for care lady to do activities with me..as per mental and physical well being/care plan. He now has the ominous task of trying to make contact with the council to confirm this.

Case of watch this space become supper massive black hole.

Hell, if council has a problem with that they can sue me and I will counter sue for all the ruddy aggro they put me through. Well, actually I won't because I can't be doing with trying to get a lawyer,I can't be doing with the many layers of bureaucracy that weave themselves around and then swallow me up.... and I can't be doing with trying to get to courts....although I could ask Care Lady to accompany me. Ha! Ha! Irony my very bestest friend.

The right to reply...where?

2010-11-02T13:17:00.002Z

Being prepared to.... as Ms Dorries states people should... "Stand up for what I believe in", I went to her blog to ask her, what I thought to be, pertinent questions about her comments.

Surprise, surprise....comments aren't allowed. Well, I certainly couldn't find a comment section. If anyone else does, please enlighten me.

A personal spat that got out of hand or something more sinister?

2010-11-02T10:35:00.002Z

Having read and re-read the article in 'Disability Now', it could have been a spat that got of hand????

Labour v Tory....bitch v brat? Or maybe Ms Dorries has issues with disabled people having any kind of quality of life????

People will make of it what they will but I have issues with people who blog about how they are doing all sorts of things and then when someone questions if they are poorly..they suddenly go into victim mode. I don't believe you can switch illness off. If I could have, I would have years ago.

However, neither do I believe that because someone is ill they shouldn't have a better quality of life or be allowed and SUPPORTED to have one... and what I constitute as quality and support 1) might be someone else's nightmare and 2) I gotta ask just where is the support?

I am one of those dirty rottern scroungers that uses Facebook. I use it because it allows me to socialise in ways my life/illness does not allow. Some days it stops me being and feeling totally alone. Other days I find it overwhelming..on those days I find most things overwhelming.

If an MP genuinely believes that Social Networking is not something disabled people should be allowed to do..then I have to wonder if that MP would also have disabled people wearing armbands, living in segregated parts of towns and ultimately sent to gas chambers. Maybe that sounds extreme but the Natzis took away the rights of people they believed lesser mortals..to the point of genocide..and let us not forget that the mentally ill were the first to be targetted by the Natzis, although nobody has the balls to be that open and honest about it when they are giving history lectures!!!

Bedfordshire MP encourages dobbing in of disabled people who use social network sites

2010-11-02T10:13:00.002Z

Article from 'Disability Now'
http://www.disabilitynow.org.uk/latest-news2/news-focus/mps-blog-sets-web-a-twitter/?searchterm=dorries

"Disabled internet users have hit out at Conservative MP Nadine Dorries following her open invitation to report benefit recipients who communicate online excessively.

Ms Dorries, MP for Mid-Bedfordshire, wrote a blog entry on her website on 30 September, asking readers to contact her or the Department for Work and Pensions if they knew of anyone on benefits and using social networking site Twitter who has tweeted more than 35,000 times in the last three months.

Many disabled people took this to mean that Ms Dorries felt that those who regularly use the social networking site are not entitled to benefits.

Ms Dorries reacted in a second blog entry: “If you Twitter all day, every day, about claiming disability benefit in one tweet whilst arranging a night out in the pub in the next […] don’t expect someone like me not to a) inform the authorities and b) tell you to get of [sic] your Twitter and get a job.”

It is understood that Ms Dorries aimed her comments at one particular disabled tweeter, though they affected many more.

Ms Dorries told Disability Now: “[The tweeter] has whipped up an online storm by presenting an inaccurate portrayal of me, but I feel that people don’t really know that, as a Labour party member, she has a political motive.”

The tweeter, who preferred to remain anonymous (but you can read her tweets at twitter.com/HumphreyCushion), replied: “She’s wrong, I’m just a woman with a blog; I am not powerful like her.

“What she said puts everyone in the same bracket. It’s none of her business what people do at home, benefits or no benefits. The internet is really good for keeping disabled people in touch with people.”

Sarah Ismail, a disabled journalist and blogger, agreed. “I am a freelance journalist and blogger who uses Twitter to promote my work and find new work. If I could say one thing to Nadine Dorries it would be that we don’t all use Twitter to plan trips to the pub!”

Disabled tweeter Andy Platt added: “It is very alarming that a person with views like hers sits on the health select committee, which will inevitably give her a voice in the setting of some aspects of Government policy on people with disabilities.”

Nadine Dorries told Disability Now that people who are “genuinely” disabled have her support. “But if you are someone who can sit on a keyboard all day constantly updating something every few minutes, you have that level of attention span and stamina, you should be working.”

She added: “We need to see more employers providing opportunities for people to work from home. Disability organisations should be working to change the way employers think.”

•Nadine Dorries’s blogs can be found on blog.dorries.org

The grieving never ends

2010-10-28T11:56:00.002+01:00

Thanks to Norm for caring enough to listen to my terrorised warblings in the early hours.

My friend's Mum is being cremated today. I had gone into strident mode. Was going to walk to friend's house and from there join her and her family and go to the service. I felt okay about it, was wanting to be there for her..would say the normal response to situation but last night was like melt down.

Ms Strident can be really handy. Not that I have much control over her. She takes over whenever she takes over and most probably because she has to.

Having spoken to Norm, and felt I could muddle through another night, I dropped a lorazepam and fell into sleep. Woke up (as is the case) quite groggy but Strident was there, demanding I washed my hair, sorted out what I thought was an appropriate outfit to wear,busying myself trying to organise myself and then I thought about the crematorium, a freezing cold January, the droning words of the vicar, Dad's empty body sitting next to me and Mum's coffin slowly rolling behind the curtains. Shouting my final "Goodbye".

I am so fucking sick of saying "Goodbye"...of loss.

I feel an utter shit for not being there for my friend. I rang her. Of course, she was fine about it. She even said that it most probably reminds me too much of Mum's funeral and that she knows I am ill. She made a point of saying I must get to Craig's and stay safe. I bawled. Because she was so understanding (on such a day) and because I am so useless.

It isn't all about Mum's death though. It is about losing both parents at the same time. Of not being able to share my grief with my Dad...because he was gone away himself.

I have a daughter of nearly 22 and I feel like a child. A frightened child.

Yeah, I have fought, over and over for my Dad and my own survival and I managed to get my daughter through her GCSE's and A Levels ..... and maybe I will fight some more. It isn't easy though. Being mostly alone, being targetted (although i don't take that personally..I know there are many of us that will be targetted..we are surplus to requirement).

Patient Guard, this mutt is dog tired of fighting and grieving and needs to sleep.

From Dawn Willis to Zen Asylum.and back to Tommy.Gotta ask ourselves where the seeds of discrimation are sown and spread like a disease

2010-10-27T13:05:00.004+01:00

Apologies for anyone who has already read my comment on Zen Asylum's thread but felt it important to repost here:

Reminds me of what local Mind did to my friend Tommy. He liked to dress in unconventional (challenging for the 'normalists') ways.

On several occasions he was taken for quiet chats with the user group manager (who was paid for with Mind coffers) and ultimtely he was forced to leave as they made it intolerable for him to stay within the group.

I had long since left the service user group, by this time, because I realised that Mind were actually in cahoots with MH services and the Department of Health spin rather than actively making themselves a democratic voice for local service users.

After, or maybe as part of a manic episode, which ended with Tommy going into acute care, being pumped with drugs and not being allowed to wear clothes he liked..he was sent home with minimul support from services (or anyone actually) and hung himself.

The last I saw of Tommy was in the acute unit, when my Dad was in there, and he told me he was on Olanzapine and doing okay. I asked him to take care and wished him the best. F'ing futile on my part.

All I remember is thinking "why isn't he wearing the clothes he likes?".His best friend later told me the acute unit staff refused to let him. There were a fair few organisations refusing to let Tommy be.

Another example of how diabolical charities are is: after the funeral service, Mind had organised for people who attended the day cente (run by them) to go for a drink. Tommy's best friend was not invited, even though he was a regular visitor to the day centre.

If that is charity then they can stick it where the sun don't shine!!!!

Connecting into Pro-Action and not just Reaction

2010-10-25T13:05:00.002+01:00

I had closed my blog down to comments. Not going into details about why (some things are far more important than that). However, I am allowing comments because I want to connect with people who are worried about Welfare Reform, the future of disabled people and to share information in regards to protests and action that can be taken.

Due to my illness, I won't be able to get to many of the protests but hope that by connecting to other people, I will be able to get to some or pass information on. Whatever I can do, really.

If anyone else is going to the November conference, from the Bedfordshire area, please let me know. I can't afford £30+ pounds in public transport costs but am happy to contribute towards petrol.

A coalition against cuts

2010-10-25T11:31:00.002+01:00

The Coalition of Resistance Conference should be pretty good I think and it is only £3 for unemployed. If you sign up with them they send you news about what they are doing. They are on Facebook as well:

Coalition of Resistance Against Cuts & Privatisation | Newsletter 6 | October 24

Coalition of Resistance Conference | 27 November | London
Conference Registration
Name
Address - Email
The conference is filling up and it is important for people to book places now. We have managed to aquire extra space for the conference and there will be a wide range of workshops and plenary sessions.
One of the largest will be on organising against the cuts in your locality and we will be hearing from many of the new anti-cuts groups springing up around the country. Also there will be sessions on defending the welfare state, working with the unions, states of inequality, analysing the crisis and debating the alternatives and many others. A full list of speakers and sessions will be sent out shortly.

How you can help
We have just acquired some office space and are asking for volunteers to help us build the conference and help with the website. Please contact us if you can spare some time.

Please send us a small donation. We have a paypal facility on the website or just send a cheque made out to the 'Coalition of Resistance' to our address. Any money received will help us develop the campaign.

Join your local anti-cuts group and please send our website reports and photos of all your activity. If you need help setting up a group in your area please contact us and we will try and put you into contact with others close to you.

Andrew Burgin
07939 242229

http://www.coalitionofresistance.org.uk/

I want to take action but where is the coalition of disabled people?

2010-10-23T12:21:00.005+01:00

If one more person tells me not to worry cos it might never happen I will scream (again)!!!!

Maybe some people's way of coping with the inevitable is not to think about it. If you are a person that thinks (deeply) about things how can you not think about what is happening? This is all about deliberate homicide by neglect. Calculated and merciless!

Disabled people do not count, unless they can work and even if they can Britain is a country in industrial decline....the competition for what jobs are out there is high and unless the Government intends to positively discriminate, I can't see how disabled people with the ability to work (who aren't already working) are going to be 'accommodated'. And for those of us who can't work in mainstream.....there is no flexibility to work within the limitations of our illnesses. But let us be clear, the Government has no intention of supporting people with mental illness to work and I mean those with severe mental illnesses. I don't think that was the intention of the previous government either. When I spoke at their party conference about welfare reform and the disabled....and the possibility of flexible work options...I was looked at as if I had come from another planet.

It was all about recovery and that meant within specific deadlines set by the Government. It is slighly heartening to see that those who were actually part of the sub groups (ex NIMHE) are now contradicting themselves and saying 'it was all spin and no substance'. That is now the money has run out for them and they are forced to deal with the reality some of us have been living with since we can remember. However, it's too little too late. They were happy to buy into the spin when they were rewarded. Such is human nature and there will be those who will survive the culling by latching onto something, possibly government driven or by a middle class clique that intends to make itself 'the voice of the subclassed'...but I know how these things work. It's survival of the fittest and so the fittest will do alright out of it, whilst the least able get ignored.

I see some organised protests and wish I could be part of them. I just can't get to them. As ever, the more able are there, or disabled people who have those who support them to get there, whilst the least able and most isolated are left outside of things.

It would be something to see a coalition of disabled people, supported by the more able, protesting at what is to come. Sadly we haven't got the strength and against a political system that is hell bent on eradication, our time is running out.

Universal and then the much more personal bleugh stuff

2010-10-03T02:38:00.003+01:00

Have ventured further out into blogland, tonight. Haven't done much of that lately. Call it paranoia/neurosis/cowardice but sometimes I need to keep enough of myself for myself to keep going, without the graters and haters on my case.

Well, I ventured to a site which watches what government funded return to work organisations are up to. Not sure they have been up to much post new government. All charities and projects waiting around to see how political land lies before they try and stake their claim. Back to the plot (mine such as). It's talking about the 'Universal Benefit'.

Dare those of us with mental illness speak about it? In this climate of micro living, for fear of discussing anything of real importance. Well, I dare...cos there is much to lose and fekk all to gain. That is if I am picking up the media hype correctly.

One benefit for everyone on benefits. I can see how people might see that as fair. People without disabilities, who don't live alone and have a more conventional family or extended family network cushioning/supporting/whatevering that is positive. Note to others who have never had conventional families...I am not quite sure what a conventional family means but I like the idea of it in the fluffy sense..and would like to be part of one. Maybe I need to put myself up for adoption.

Looking at what would be worst case scenario for me but most probably financially best option for government, is this going to be based on the lowest financial denominator. I mean....a weekly income of round £50 to live on? If so, it won't be long before I lose my home (marbles having been well and truly lost before hand).

This may sound like melodramatics but I think I will be looking for the opt out clause in life. I don't expect this to sway anyone's opinion. It will just be a reality for me that I won't cope with bills (I can't pay) or what might become the luxury of deciding what days to eat on. Ho hum.

What will be, will be and I may not be when what will be is!

I had previously toyed with (then shelved) a posting about what constitutes self harm. Which may or may not have proved interesting. It came about after a discussion I had with my 'phone a friend'. Have been suffering with ear ache, more itching and swooshing in ears which then seemed to spread into my jaw. Had been mostly neurotic..trying to work out what it might be...swaying between infection and cancer but 'logic' got the better of me and thought infection most likely. Anyway, sort of mid conversation it struck me...what it was and also reminded me that my memory can be very selective. Have had pretty rancid couple of weeks, fighting, mostly, losing battle with depression..but putting up one heck of a fight. Somewhere in the middle of last week I got to the angry and frustrated with self stage and punched both cheeks with my fists..and then promptly forgot I did it. May sound bollocks but that is how it was...and it was the conversation with friend that triggered something in my memory.

After that, decided best not go to GPs. What's to say, without ringing alarm bells? "I inadvertantly punched my cheeks so hard one has swollen up?" or be honest and then get that look from them..the one that means they want you out of their surgery as soon as. I certainly don't need to have 'Self Harms' as another tick on my care co-ordinator's check list. I don't consider it habitual. I have done this sort of thing before but not often. It just got to that point..the point where I did it and wasn't even consciously thinking about it. I think if I had done a post on self harm..I would have been seen as 'lame'. Actually, calling it self harm...even though my jaw is refusing to move that much and hurting like fuck when I force it to. Another daft cow moment.....payback in neurosis too high!

The final bleugh stuff..the bleughest of all for me, right this minute, is it feels like winter already. I always get the dreads around October time..followed by traditional (having never come to terms with) winter doldrums......but it seems worse this year. All the rain and the rain and then the rain. Sometimes, I like rain. Summer rain...on brave days walk about in it.......but this is dismal, cold, hard, unrelenting rain.

Then again these are dismal, cold, hard, unrelenting times. Could be personal...could be more general. That is how I am feeling it.

Letting Go - Final Letter to MP.

2010-09-22T10:19:00.000+01:00

Thank you for your latest letter and your support with my many communications. I apologise if it has seemed I am just making a nuisance of myself for the sake of it. That has not been the case. I genuinely believe that I have had to fight for some basic rights for my father and appropriate care for myself.

I do now feel that specific areas of concern in regards to my own care have been addressed. Respite care is now an option for me and is in place as is the Direct Payment, which I am using to get support to take me out and involve me in things that are beneficial to my well being. I do not think I would have got these without your support and the support of the lawyer.

However, I am most unsatisfied with what has happened in regards to my father. I understand the law is the law. Both my father and I will abide by that. What has frustrated both of us the most is the lies we have been told and the way we have been messed about by different services. It still continues with my father having asked for an advocate and not got one. Being told by South Essex Partnership trust that he was not sectioned, in the past, when both of us know that he was. These things seem to drag on and on, with endless streams of paperwork to go with them, just trying get to the bottom of things and I do not think it is in the best interests of my mental well being to keep fighting for this.

I do feel that I am letting my father down but I can’t continue to battle on, hitting brick walls. His basic care needs are being met and I no longer have to worry that he is in a position to kill himself. That, I think, is as good as it is going to get.

I do worry that if organisations are allowed to keep lying that it becomes acceptable practise but one person can not change the system and I would be stupid to try.

Again, I thank you for help and hope for a better future for us all.

Accountablity and sharing one's own truth

2010-08-06T19:00:00.002+01:00

I have taken, of late, to not sharing much about me and what I do. Mainly, because of the vultures out there who just love to pick at the bones of people if they get half a chance BUT I am sharing my latest letter to my lawyer because ..well just because I feel I have to keep fighting for justice in a country where justice only serves the most wealthy and able.

Here goes

Dear (solicitor)

Re: On going concerns regarding South Essex Partnership Trust and Gaining Access to Pertinent Information

I am afraid I am writing to say I am most perturbed by what is going on. In addition to the Trust continually delaying it’s response to the letter you sent them on my behalf (at the start of summer). I am perturbed that I still don’t have a copy of the letter you sent to them, so am unaware of what has been written on my behalf.

I would like to clarify that during our initial meeting, prior to you taking up my case, I was seeking a copy of the Report on what led to my father’s suicide attempt, last autumn. This is a fundamental piece of evidence in regards to the level of neglect my father was subject to and the level of pressure I was put under, having to try and keep my eye on him and maintain my own mental well being (which was severely affected by what happened).

I understand from what you have written that my father is not entitled to legal aid. However, I think that the law is being abused by the Trust’s unhelpfulness in providing formal documentation, which is paramount in him receiving what he is entitled to.

The panel met in December to agree what support my father would be given and both my father and I were (verbally) informed that the panel agreed to him going into a care home and that the costs of this would be covered (in full) on the grounds of his ill health. However, Social Services are now paying for his care and he is losing his pensions because of this. It is not fundamentally about money. It is about what is just and fair and, his entitlement to formal documentation on what was agreed. I write this to you because due to the misguidance both of us have been given, I have been called upon to act on my father’s behalf in matters that have caused me major stress and distress.

All either he or I have had is verbal agreements. Nothing has been put in writing, at any time, and sent to him or me.

The only resolution, I can see to this situation is that Freedom of Information Act Requests are sent to the Trust for the original formal documentation. That being

The Report completed on my father (including details of the stress it put us both under)
A copy of the original agreement that the Panel made, in December, prior to my father going into the care home.

I appreciate that you think that my father’s outstanding issues have no relevance but in addition to the length of time it has taken for any of my concerns to be addressed, which has been a very long time indeed, the fact that I have had to try and get (unsuccessfully) documentation regarding verbal agreements and investigations/report, I think it unacceptable and there must be a way for the law to carry out a duty to vulnerable people who are being abused by continual system failure and deception.

I have sent a copy of this to my MP because I believe it isn’t just about the law trying to make people and organisations accountable but for those who represent them to try and do so to.

I feel strongly that both my father and I have been continually neglected and treated unfairly by systems that have done little to alleviate the stress placed upon us.

Yours sincerely

As banks make mega profits....David Cameron proclaimed new Messiah

2010-08-03T22:21:00.002+01:00

It really is amazing what 2 month's in office can do for the economy! Well the Financial Sector.

Yes, of course I know it was fekk all to do with the Tories but they will claim it is something to do with their 'Big Society ethics (a bit of 'penny pinching' from the rich and 'pound pinching' from the poor'

Fuckers!!!!

I am expecting my letter from Job Centre confirming I have been given work as a CBT Therapist any day now.

Me: "Tell me about your childhood"

Followed by heartbreaking trip down their memory lane

Me: "Now it's my turn!!!"

Why send in the clowns when you can use Trojans????

2010-08-02T11:11:00.003+01:00

Would like to thank the person who sent the Trojan virus via this blog. Very clever of you. Now you can go off and feel all smug about your technical abilities.

Love the way it's all anonymous and behind the scenes. Total cowardice really!!!

Evidence suggests there is more to depression than low serotonin levels

2010-07-24T12:16:00.002+01:00

'New Scientist' Article: "Rethink Needed For Cause of Depression"

"IF YOU thought depression was caused by low serotonin levels, think again. It looks as if the brain chemistry of a depressed person is much more complex, with mounting evidence suggesting that too much serotonin in some brain regions is to blame.

If correct, it might explain some of the negative side-effects associated with selective serotonin re-uptake inhibitors (SSRIs), antidepressants like Prozac which increase the amount of the neurotransmitter serotonin in some parts of the brain.
The traditional view of depression was largely based on the observation that SSRIs boost mood- although why they do so is unknown. "Because antidepressants increase serotonin in some parts of the brain, people assumed that depression must be the result of low serotonin levels," says Christopher Lowry of the University of Boulder in Colorado. But the discovery of multiple types of serotonin-releasing neurons in the brain, along with high levels of serotonin recorded in people with depression, is prompting a rethink.

"What's more likely is that there are subgroups of serotonin neurons that are overactive in depressed patients, rather than underactive as we have all been assuming," says Lowry.

It's likely there are groups of serotonin neurons that are overactive, not underactive as assumed.

One of the first clues that something might be amiss with the traditional theory came three years ago, when Murray Esler at the Baker Heart Research Institute in Melbourne, Australia, and colleagues found that the level of serotonin in the brains of people with panic disorder was four times higher than in healthy volunteers (Stress, DOI: 10.1080/10253890701300904), and in depressed people who were not receiving treatment it was two times higher than in volunteers (Archives of General Psychiatry, vol 65, p 38). They also showed that long-term use of SSRIs in people with depression and panic disorder seemed to decrease serotonin levels through an as yet unidentified mechanism.

Now, in studies of rats and mice, Lowry has found that there are multiple types of serotonin neurons that can be independently regulated. He presented his results at the Forum of European Neuroscience in Amsterdam, the Netherlands, last week.
This fits well with findings from other groups that there are two types of serotonin receptor in the amygdala, a brain region linked to emotion and anxiety: 5-HT2A receptors that inhibit anxiety, and 5-HT2C receptors that promote it. The roles of the receptors were identified by injecting drugs that either stimulated or inhibited each receptor and observing the animals' behavioural response

Together, the findings might mean that while high levels of serotonin in some brain regions like the prefrontal cortex can lead to improved mood, high serotonin in other regions could have negative effects.

Evidence for this idea comes from Gina Forster at the University of South Dakota in Vermillion and colleagues, who injected a stress-related molecule into the brains of rats and found that it triggered two phases of serotonin release. An initial wave of serotonin appeared to increase fear-like behaviour in the rats, while a second wave decreased this behaviour, possibly because it activated a brain region called the medial prefrontal cortex, which is associated with calming of fears (Neuroscience, vol 141, p 1047).

The new findings have implications for how SSRI drugs work. In the long-term, SSRIs do tend to have a calming effect, although more research is needed to understand how they do this.

However, in the short-term some people taking SSRIs report feeling increased anxiety. This is "almost certainly due to the activation of one of these groups of serotonin neurons", says Lowry. The suicidal thoughts some people taking SSRIs claim to experience may also be linked to boosting serotonin, as suicide is thought to be associated with increased impulsivity. "It may be that certain types of SSRI are affecting these impulsivity circuits in the brain," says Lowry.

Learning more about these different groups of serotonin neurons could lead to better treatments for depression and anxiety disorders. "It might be possible to design very specific drugs that can turn on or off specific groups of neurons that are deregulated in anxiety or depression," says Lowry."
http://www.newscientist.com/article/mg20727703.300-serotonin-cell-discoveries-mean-rethink-of-depression.html

Panic Ye Not...All will be fine (cough, cough)

2010-07-20T13:11:00.002+01:00

With everyone on incapacity benefits or DLA for MH related illnesses stressed to max that their benefits are going to be taken away from them, a reassuring word (via Hansard site)....

Yes indeed. Paul Farmer of Mind, will be acting as an advisor to the government on the capacity assessment process.

Phewee..and there was me thinking that us loons were up for another hammering.

We all know what stirling work Mr Farmer has done on placing 'Mind' centre stage in the role of deliverer of work programmes for the mentally challenged. What do you mean, a clash of interests? No clash of his interests (for himself). Oh yours...well, sorry mate but yours, mine and anyone else with mental illness's don't count.

Rest assured Mr Farmer's position as government lead will be secure for quite some time.

Butt-kissers....you best get back to doing what you do best. There might be something in it for you.A shiny shiny award given to the person with the most chapped lips.

Bullying within Blogland...and while we are at it let's talk about stigma shall we!!!!

2010-07-14T18:00:00.002+01:00

Another blog is likely to bite the dust. One of the few I venture to..one of the few I believe is written by someone who is genuine and not trying to become some MH celebrity or ,worse, hell bent on destroying others who don't agree with them.

Was kinda discussing this on Facebook the other day and for all that the MH elite will look down their noses at it, I have found many people there to be much more supportive than those (who do have or claim to have MH problems)out in Blogosphere. I think that says more about Stigma and Discrimination (as in where it's roots lie) than any anti-stigma campaign, I have come across, says!!!

One person came on to my FB page and wrote about 'countefoil' which is actually a clique of people whose sole purpose seems to be to harrass those who don't agree with an agenda they are following. Obsessive, I call that... but damn dangerous too because there are many vulnerable people who blog. Who find it an outlet, where they can express their feelings and experiences in ways they cannot in other areas of their life. Nasty little fekkers, sending private emails (not just the odd one either but in a pack) can actually push someone who is quite fragile over the edge. Do they give a damn? I doubt it...as long as they can carry on making out their the experts, all the time behind masks...all the time shifting from being ill, when they feel threatened to in recovery when there's something to be gained from it. Dolly Parton's tits are more real than they are and more impressive!!!!

I changed my blog and when I did I changed my attitude too. I got rid of the email option so if people have got the balls to express an opinion, they can do it openly on my blog. If not, they can keep their opinions to themselves. I haven't however, become a faceless wonder...when I go to other blogs (which gets less and less as time goes on), I go as myself and I also put my email address up before my comment gets posted...so they can email me if they wish. I am not frightened to stand up and be counted and defend my beliefs. Is not heroic..is just being honest.

What I won't tolerate is people I don't know sending me abusive mail because they haven't got the bottle to say what they think openly and on the rare occasion I do now get abusive emails, I simply write 'F off' back to them.

Blogland can be (and often is) swamped by a bunch of fakers, showing out, in order to be headhunted by the media. I don't think that makes for a fair and objective view of people with MH problems but such is life.

As for me, I will continue to write what I write, as I think and feel, depending on level of importance to me, other stuff going on in my life and my personal state of being at time.

Not going to let any snidey arsewipe (or groups of) stop me.

A voice from the wilderness...saying "I don't know WTF is going on either"

2010-07-14T01:34:00.002+01:00

As I hadn't heard anything from my lawyer for some time; not since she emailed me writing that she had written to South Essex Partnership Trust, raising the concerns that I had discussed with her (back in May), I decided to touch base and ask where things were at.

I got a response today. Cutting to the chase, The Trust Complaints Manager has managed to acknowledge receipt of her letter to them and promised a response by 7th July. Well, that date came and went so the lawyer chased them up. They asked for a stay of grace....until 16th July and then, in another communication, requested a Written Consent Form signed by me. Luckily, I had signed the form at the original meeting with lawyer.

The Trust then asked for a 2 week's delay (in addition to that of 16th July). Lawyer has given them one week, which takes us up to 23rd July. Wonder what excuses The Trust will come up with then. Bet it's the tried and tested (and used like a worn out record) "The manager is on leave and won't be back until......whenever". We shall see!!!

Lawyer was also concerned that she wrote to my psychiatrist and ex care co-ordinator (after our initial meeting) asking them to organise a CPA meeting with me, and she hasn't heard anything. Talk about weird timing. I got a letter, today, requesting my attendance at a meeting next Monday...perhaps she will get a copy of that letter, in the next few days...and perhaps not.

In the meantime, the issues over Direct Payments have gone on...with the Trust, originally insisting I use a care organisation approved by them..only for ex care co-ordinator to be told (by that company) that they don't cater for the sort of care my Direct Payment is to be used for. An officer at the Disability Resource Centre got involved and between them and myself (with minimul input from CC) we drafted a Job Description, that is now in the local job centre. Closing date for applicants, Friday. All being well, interviews next week. Considering it took from the Panel Agreement in December until May for the Direct Payments to actually start being made...I reckon this is small fry. Am laughing here because my review date (effects of Direct Payment on my well being) was scheduled for June. The way things are going, I won't even start using them till August!!!!

As for the care support being provided to my father, by the Older Age Person's Team...That is another blog posting, in it's own right, and is not a tale of SEPT doing something right but actually not doing anything at all. When I last spoke to Dad about it, he blames himself for being a 'hopeless case'. I don't blame him at all..I blame them for adding to his feelings of worthlessness by their highly conspicious absense in regards to his care. Luckily, his basic needs are being met and very well, by the staff in the Care Home..but that is no excuse for the Trust to have no involvement in his care at all. Ah well, me thinks the complaints manager will have yet another letter for them to pussy foot around....sadly father is not entitled to legal aid and local advocacy services proved utterly useless after he took his overdose. Almost like they hadn't got a clue what to do. Welcome to the ruddy club!!!!

Health Service Journal - Survey -Govt White Paper on NHS Reform

2010-07-12T23:44:00.004+01:00

Can't remember when I subscribed to HSJ online thingy but it was in response to some lame comments made by shrinks on there....friend sent me details. Anyway, that aside, have mostly avoided it because it is aimed at quote - Health Professionals unquote - and I don't want to be spending too much time around those types.

Latest update from the HSJ is email encouraging people to complete their survey on the effects the outcomes of Govt White Paper will have on NHS reform. I assume the people it would prefeer responding to it's survey are NHS professionals but I took up the challenge, whatever.

From the titbits of info I am picking up... here and there, the shift will be from PCT to GP Commissioning.

I actually found the questions directed to specific answers or more likely not allowing for a broad and most probably more general view on what 'people' think the outcomes might be. Then again, it was aimed at NHS staff rather than Jo Public (and patients) at large. Naughty HSJ...aren't you forgetting where your bread and butter comes from?????

I have to say, of the about 10 questions that were asked, I answered half-ish of them with "Don't know" because what a govt says it sets out to do and what actually happens are often very different things. However, I do believe, it should (whether it does or not) cut out alot of unnecessary and surplus to requirement management that's sole purpose seems to be to provide layers of bureacracy, at present.

I like the idea of GPs having more power to have specialisms within their surgeries (should they choose to use the money that way) and also the power to refer patients on to specialists (not necessarilay the ones they are referred to now). Is this where a possible choice agenda for MH patients could begin in earnest? Maybe...I think that depends on the GPs...or individual GPs more like..and the relationships they have with their patients who have MH problems.

It could all be part of some privatising of NHS..not so much through the backdoor as via a window (of opportunity???). If I was asked "Will that be a good thing?" I would have to say "Depends on the quality of the services that will be given and who will have access to them". I think there is enough of a divide between the rich and poor in this country already and we already have private healthcare systemS for those with the dosh who can then CHOOSE to opt out. Ho hum!

Would have been more democratic, on the part of the government, to do some of this consulting with the public (as pioneers of The Big Society) before producing the White Paper but we all know that rhetoric is exactly that and this Government is hell bent on getting what it wants. The rest of us are just along for the beating!

Not sure if anyone can access this but if you want to have a look at the survey, hope the link works.

http://www.zoomerang.com/SurveyWEB22AWM95HEED

A woman, finally, gets some justice for the injustice done to her whilst in care

2010-07-11T07:58:00.002+01:00

http://www.belfasttelegraph.co.uk/breaking-news/uk-ireland/church-pays-woman-drugged-at-home-14868828.html

The Church of England has paid "substantial" damages to a woman who claimed she was heavily sedated during her time at a children's home, it has been disclosed.
Teresa Cooper, 43, accepted the out-of-court settlement from church authorities after alleging that she was abused and restrained with doses of tranquillisers and other drugs.

A BBC investigation last year revealed that some girls who were heavily sedated while living at Church of England-run Kendall House in Gravesend, Kent, in the 1970s and 1980s went on to have children with a range of birth defects.

According to files from Kendall House, which is no longer a children's home, girls were given massive doses of a number of drugs over long periods of time.

Former resident Ms Cooper's three children all have birth defects and she has fought an 18-year campaign to secure justice, she said. Her eldest son was born with respiratory difficulties, her second son was born blind and developed learning difficulties, and her daughter was born with a cleft palate and a short lower jaw.
Ms Cooper, who left the home in 1984 at 16, was given medication at least 1,248 times over a 32-month period. This included three major tranquillisers, drugs to counter side-effects and anti-depressants, including up to 10 times the current recommended dose of Valium.

The Diocese of Rochester said it has not admitted liability but said it hopes Ms Cooper would now be able to move on with her life. In a statement, it said: "Although Ms Cooper instructed a legal firm, no legal proceedings were issued. In reaching a settlement, no admissions of liability were made. It is our fervent hope that the terms of the settlement agreed will assist Teresa Cooper move forward with her life."

Ms Cooper, a writer who lives near Chelmsford, Essex, said she would like a public apology from the church. She said: "The settlement is a step in the right direction. The church has worked with me on an equal level, which took a long time to achieve and I'm quite happy with what they have done. But I would like them to investigate what happened, what went wrong and to investigate the drugs that were used that saw girls go on to have children with birth defects.

"There are lots of things the church can do and which I believe is their Christian duty to do, and I would also like a public apology at the Synod. Hopefully, we will now get justice for the other girls."

A statement through her solicitors, Lavelle Coleman, said: "In a recent settlement, Teresa Cooper has received substantial High Court damages and has concluded her years of effort to secure justice in her case. Represented by Lavelle Coleman solicitors and Elizabeth Anne Grumble QC, Teresa was finally vindicated and her pain and suffering were properly acknowledged."

Respite-ary unblockage...in spite of bare faced lying and skullthuggery of all sorts

2010-07-10T19:27:00.006+01:00

How long it is since 'Steppingstones' rehabiliation and respite care centre was closed...I cannot remember....but would guess around 5 years.

So it has been a 5 year battle...with much bullshitting from the powers that be along the way....to get to the point I got to on Wednesday. That point being, I finally got some respite care. Yep, get the balloons, party poppers and banners out. Houston, we have lift off!!!!

Well, I had lift off :>)

I think the several letters from MP, literally starting from the words "Public Consultation" (which turned out to be a staged one off event in central Bedfordshire... only MH Trust managers and a couple of members of the service user representative group attended - no other invites sent out) might have helped along the way. Those letters and the threat, more than any action taken by a lawyer and mostly a pro-active care co-ordinator who had to find out about the centre in Luton, with minimul support from managment (a certain member of said management insisting there was no such thing as respite care in Bedfordshire and rather grudgingly saying that if the care co-ordinator believed I needed respite to go and find it). Thankfully she did, not long before finding herself another job and I don't blame her. With bosses like that, who needs enemies!!!!!!

Anyway, it may have taken a long time but progress has been made and overall it was what I needed.

The centre itself is modern and not in a clinical, clinking clanking of keys, people ushered to meds, ushered to OT, ushered to meals and then ushered to bed, way. It, has rightly won awards for excellence because it represents valuing patients in a way I have rarely seen in anything provided by MH Trusts before.

It has 3 floors. The bottom one is what I would call The Everyday Floor. Staff Room, Kitchen, TV Lounge, side rooms for visitors and meetings and a couple of bedrooms. I was in one of them. The other 2 floors are for men and women, respectively (so that, I assume the needs of women can be catered for specifically as with the men..I assume, I don't know and didn't ask).

The highlight of my stay has to be the garden. A place in which I spent the biggest part of my waking day. As I wrote to a friend, most of the other part of it spent at 'puffing billy' (no sexual activity took place)....just outside the centre walls. I find it ironic (then I would as a smoker) that in amongst all this anti stigma bollocks that goes on...you have a line of people forced to smoke on the pavement outside an NHS building (which has no name because it doesn't want to bring attention to 'psychiatric references').

I think the song does go "The saddest sight I ever saw was people smoking outside the hospital wall". I am not being pro or anti smoking here. I abstain because I am biased by addiction but there has to be a better way of acknowledging patient needs without them having to pace about outside on a busy road, looking really conspicious. Perhaps the NHS policy is to shame patients into quitting the habit. Believe me it doesn't work!!!! Just give us bells and we can walk around bawling out "unclean" at the top of or voices!!!!

That is my biggest gripe and I know I will always be outnumbered on that one. Mid winter, snow falling,extremeties frozen, I will be out there puffing away.

Back to that glorious garden. Massive it is. Lots of different trees, flowers and plants and wonderful aromas. Slap bank in the middle, most encased in lavendar, is the pond. I spent a fair bit of time playing spot the fish. Was informed there are some but never got to seen them. Can think of worst ways of wasting my time.

I did plenty of reading (something I have struggled with lately) and my cans were rarely off my ears.

There was a bit of a mix up over an OT trip out bowling. I had (whilst taking notes of patient meeting) put my name forward along with 3 others to do this activity. When the time came, the OT person didn't turn up. So I went back to the garden and it was only when I went out for a ciggy, I clocked their car full of other patients. I assumed, based on her blank look when I asked if I could still attend, that people in respite are not allowed to go. Later I spoke with the Staff Nurse because I needed to know what the policy was. The policy is anyone can go but it is a first come, first served basis. Hmmmm.....Not sure if the OT lady had an issue with me (she is also the smoking cessation champion!!!) or just my paranoia but the communication went totally tits up and it left me feeling completely isolated, dejected and paranoid.

After ringing my mate, decided not to just up and leave and their advise was to talk to the OT personage and let them know how it made me feel. I didn't get that opportunity...so decided to leave it be because I do need to use respite care (sure that time will be pre or post Christmas) and should the same thing happen next time, I will challenge them directly and see what the problem with me, if there is one, is.

The other patients were friendly, in their unique ways and I became fond of one person. I will call her 'Rani' (which is not her name) and in spite of the many difficulties she has, came with me to the local shop and said if I forget where it is, she would take me there again. We had brief but warm chats during my stay and when I was waiting for the taxi to bring me home, today, she came out, gave me a warm hug and wished me well. I hugged her back and said I wished her the same and that if she was still there, next time, I look forward to seeing her.
I nearly cried.

The most basic kindnesses get me like that. There are so few of them around these days. It's all top show, no underwear city....and fekk all feelings to show for it.

Time was too short to really bond that much....and I felt a bit like I needed to keep some space...so that people didn't get too attached to me..or vice versa and then having to leave and me dealing with that. It was only respite and, anyway, I know that I can be over-bearing so kept myself low key.

Staff were pretty helpful too. I did struggle around my medication. That was my issue rather than theirs as I don't have a set time for taking them and had to ask..and often I got paranoid and then would get to freaky point before asking. Lesson learnt..particularly as staff nurses made it clear that as long as I stuck within my allowance, when I took my meds was down to me.

My relationship with them grew from minor distrust (because of prior experience of most things MH Trust wise) to respect. I knew the lead STR worker from stay in the old style pyschiatric unit, before acute care become too much like a mini prison style pressure cooker environment and the staff nurses were really good. I felt I was dealing human to human, rather than playing the boss/servant game.

So South Essex Partnership etc etc etc Trust. You do have something that, mostly, works really well and like I say, I am the first the lambaste when all is not well but credit where it is due and I give the respite care place 8/10. If the OT had gone smoothly it would have been a 9....the other 1 point is out of the centre's control because you can't change national policy!!!

Now it is time for me to collapse in heap as my dry disks are playing up....time to sedate myself. It will still hurt but I won't care so much.

The futility of voting for change

2010-07-03T11:26:00.003+01:00

As I am sure many others are, I am deeply concerned about the goings on of this Tory/Lib Allegiance Government.

Previously, I have waxed positive about my local MP (Tory) who did, a fair bit of the time, fight my corner as I tried to get local MH services to do their jobs properly, fairly and consistently. However, a local MP dealing with their constituents is very different to a steamroller approach to stuffing the poor and vulnerable.

I have lost faith (totally) in the political system, which I should have realised only serves a certain section of society. I detest above all the Liberal Democrats for selling themselves out (apart from the referendum next May on Proportional Representation...which seems to be the only thing they now care about viz a vie their morals) and becoming whores to their power lust. Hope they enjoy the time they have sharing power (make that being subserviant to the Tories). I doubt they will be respected come the next general election..whenever the fekk that will be because the Tories wanna close the system down to a point where they run the show...indefinately.

The only political action I will be taking, in regards to the shite hole this system is, will be to go along to future balloting stations and write "It all stinks to high heaven" on my voting paper.

Fekk em all because they sure as hell are going to fekk me over!!!!!

So much for the Glory Days

2010-06-02T23:42:00.004+01:00

Thank heavens for Whistleblowers, I say

Daily Mail Article -
Whistle blown on South Essex Mental Health Partnership Trust

Beds Mental Health Trust goes SEPT-ic

2010-06-02T22:40:00.002+01:00

Yep....it's merging and blurring and all round a bit of a cock up.

Oh Beacon of the South East hasn't turned out quite to be the shining light that everyone assumed.

I heard, via the grapevine, that an amount of money that was 'supposed' to be allocated for carers was used to cover financial probbies elsewhere and when South East Essex Partnership Trust were asked where it had gone, they replied "Well, nobody told us it was ringfenced".

Dr Geohegan...that self proclaimed bearer of the silver slipper in this Cinderella service land, seems to have been missing in non action for the past year he was 'caretaker' managing..Literally nobody could communicate with him and he refused to communicate with anyone else (including my MP).and not much has been heard of him since he officially took to the helm of a very much run down Bedfordshire and Luton MH Service.

In fact, the only thing anyone has noticed since he started is that jobs are not being re-advertised, caseloads are doubling (likely to treble now) and quality staff (such as my most recent care co-ordinator) are leaving Community Mental Health Teams pretty sharpish...needless to say the dead wood is being left to float around in the mire with no one having the balls to either breathe some life back into them or pile em up and ship em off.....apart from some of the more angry and vocal patients. Others are doing the usual talking on corners and the talk is not of a renewed faith in a kind of seconded management team overseeing their care service more a depressed acceptance that it can get even crappier than it is. When you are having your care services delivered by one of, if not, the worst MH Trust in the country there isn't much to be optimistic about.

I understand (altough don't have the full details) that SEPT is once again being called to task about some other misdemeanors in the core (Essex) part of it's service. That is the one with Beacon Status.. the Trust that everyone in the Eastern Region bows down to before it's glory or gets their eyes burnt by the glare.

I have to say I am not surprised my care co-ordinator is leaving. She was one of the bright young things, intelligent and eager and run ragged...doing the job of 2 (maybe more) people.

Finally, between her, my MP and lawyer (although the latter seems to have sauntered through the gate after the horses had bolted) my direct payment has been paid into my account. That was last week. I remember the frantic day my care co-ordinator turned up and insisted I opened a new bank account that day, because the panel had agreed it and she had been informed I must have an account for the impmending payments to be paid into. That was the week before Christmas.

It does..and that is mostly due to correspondence between my myself MP (a rather vacant MH Director who wrote an Action Plan that seemed to be for someone else). In this plan the Director, who had informed me in November that it was looking positive in regards to the Direct Payment Application. In the plan he made a key point of stating there was an option of going for a Direct Payment to support my needs viz a vie my care plan. Did he take an amnesia pill at some point.

Actually, the commitments he made in regards to Dad's CMHT input into his care have amounted to fekk all. Dad hasn't seen anyone from that team for a couple of months.

All this is bureaupap is now with the lawyer. I am sick of dealing with complete cretins who obvisously are better at writing Action Plans (incorrect as the information within them may be)..than keeping staff informed of and ensuring they adhere to what they should be doing.

If I were to give Dr Geohegan one piece of advice, it would be to find out what his Directors are up to..and if they are up to directing. After that, I would say that I think he bit off way more than he could chew. He is most probably relieved that the Tories got in, with their agenda to slash public services...it now gives him an excuse to carry on what he has been doing (pretty much unchecked) for the last year.

I wonder if Mr Cameran is planning to look at the management styles and salaries of those in top tier positions within MH Trusts and to equate that with what is actually being delivered to patients. Not that anyone will give a stuff.

People are going to be so stressed and hard pressed. Dog will eat dog, anything smaller, less cunning, injured...The time for the survival of the fittest is nigh.

Hark..I hear the bell tolling! Nope it's just the pinger on me microwave oven, telling me the pizza baguette is ready.

How do you create work in a country whose production industries are dying or long gone?

2010-05-29T08:05:00.002+01:00

Is it only me who is not so quiety panicking about the debt this country is in?

Perhaps the new government has, by coming out with guns blazing, got me to talking about things I have been thinking about for ages. I did used to write about them but nobody seemed that concerned..or other concerns were more important to them. No crime but the 'ostrich' years are over.

In some ways I respect the new government for 'SAYING' it is going to be responsible and for seeming to take, at the moment, action to resolve the debt problem with it's first emergency budget due and already attempting to clear £6 billion of the debt but that is just a piddle in a massive ocean and where is the other £144 billion to be found from?

The notion of that kind of money is beyond me...particularly as I have always thought the money market is based on little substance and actually alot of notional money seems to have been moving around (heaven knows where or why). Actually, to me it is all notional rather than substancial. It certainly doesn't seem to bare any significance to anyone's life until there comes a point where debt has to be paid back...because who are 'the national we' to be paying it back to?

And then...it all gets very scary indeed because, you have to look at the hows and that means the country's capacity to do so.

Will a massive cut in public spending clear that amount of debt? I don't think it will in itself. If I put the argument about how necessary public services are to one side (because surely everyone believes there should be a public sector of some kind or other) and look at the money...I don't believe that level of debt will be cleared....and the bigger issue is ..how are we to sustain when alot of our production industries are in decline, or gone?

I was actually contemplating this notion of a 'big society' and wondering if I could sustain within work because in spite of my scepticism, I would like to be part of a society that does care, does work together and is 'better'. However, on a personal basis, I know that I would not cope nor would employers and other employees cope with me or for those who believe that illness is not all that a person is....how 'we' would cope with with my illness because, as yet, I am unable to be 'consistent' or maintain a level of coping that would fit with conventional work environments. Could start to talk about flexible work....working from home etc but as a society we haven't come that far yet. Maybe we will get there but before we get there we need to have work opportunities and lots of them...and unless I am completely oblivious to what is actually happening the work isn't there and companies are still closing down on a daily basis.

I don't see the growth of new industries...and not on a scale to replace the old and I am not sure quite what a'Big Society' means in realilty. Is it something like modern China? Because how can we compete with that? Do we want to be like that?

I am not clever enough to comprehend all this in a way that doesn't confuse me or stop me getting headaches but I do have to wonder at consistent governments who have allowed the financial sector to be so greedy...possibly encouraged it..who knows?????

Maybe the financiers pull the strings? Hmmm. Nosebleed stuff

A slightly (actually not sure how slight) bisexual's ponderings on gay and lesbian celebrity...and possible equality issues

2010-05-23T14:36:00.005+01:00

Before I head off into territory that is going to darken my name further, amongst the PC police and their snitches, I can say that it is for reasons of curiosity that I am posting this post.

The first thing I want to look at is the growing fashion statement, amongst gay presenters, that is the 'orange fake tan' . I thought David Dickinson had the monopoly on this one. Disclaimer coming... if Mr Dickinson is gay then not openly so...and assume that he is a happily married man...assume because you never really know what goes on anywhere except in your own life and even then I am not sure that anyone can ever be 100% about anything..."We fade to grey"

Anyhows....the first presenter I clocked going for the full on orange effect was Dale Winton. Not sure if Graham Norton came on board next or Stephen Fry but, recent viewings of Mr Fry on QI (which I still find quite interesting and much more so when Johnny Vegas is on)have had me toning down the brightness on my tv. Am wondering if it is part of a 'gay celeb' status symbol. Or just really shit taste.

Let it not be said that I am totally biased, although confess to a high level of biast when it comes to Stephen Fry. I have clocked a more svelt like SF, lightening his hair (easy on the eye) and seeming to have become more aware of how to co-ordinate his costumery. Not that that actually makes much difference of my opinion of him as an 'essential item in anyone's recovery tool kit'. I didn't mind him on the plumpish side, with greying hair and not being a dedicated follower of fashion. I was more worried about this iconic status, as a MH gugu and spokesperson for us loonies at every MH gala event/media opportunity going.

No...it is for me a question of why? Why fake tan and why so orange? I mean I know us Brits love our gay celebs on the camp side. Not sure we are quite ready for a non camp gay celeb (for years we watched John Inman... telling us he was free... and although I am sure we knew in our heart of hears that he was gay...we couldn't quite bring ourselves to speak about it openly) but it wouldn't hurt for the water to be tested on that. There are possibly (because it is a pool full of lots of celeb fishes) that there are gay presenters who no one clocks are gay because they (for whatever reasons) haven't got a camp side to their personality. I am not knocking 'camp' in itself...more asking what the options are. What I am trying to say is that there must be more to gay people than being camp.

Possibly it is the historical comedic appeal of camp that prevails (stamped on the Brit psyche) but I am not sure that does gay people any favours if they actually are looking at equality or if it doesn't matter so much when they make celeb status as long as they make celeb status. Or maybe it does..and they just don't dare think about it????? Whatever, the orange thing does not look good on anyone (Gay or not) but is guaranteed to get a person noticed.

My second concern.... and this is much more serious.... is about Lesbian celebrities. How many can you name? I can only think of one: Ellen Degenereusse..I can't remember how to spell her surname but it sounds like that. If I remember rightly, she is an AMERICAN comedienne turned presenter turned talent contest judge. I have a certain amount of respect for her because I think she has actually done some trail blazing. Problem is the trail hasn't blazed it's way across the Atlantic. We reckon the Americans can be 'conservative' but I, unless oblivious to what is happening on the celeb scene, can't think of any celebs who are Lesbians. Perhaps people think this is petty but if we are talking about equality...then surely that means 'accessing all areas', being able to be open about one's sexuality (or not if one doesn't want to..but not being in the closet because ambiguity seems the most popular/safe route to take).

Are we 'as a nation' happy to stick with the camp gay male celebs but see lesbians as far more of a threat? If so a threat to what? Along the same lines but off on a bit of a tangent...female celebs seems to be becoming camper as well. What is all that about?

Maybe the fact that I am writing about celebrity is the crutch of this issue. In order to be a celebrity now...you gotta be brighter or louder or cleverer or polyfilled to the max and ORANGE!!! You gotta have a gimmick and a gimmick that keeps the suckers wanting more even if you have no real talent at all (had to get Katie Price in there somehow)...and in my books they don't get anymore camp than her.

What a backwards step for equality it all seems to be and a forward step for faking it for fame.

And maybe the orange thing is a bit tongue in cheek or maybe it is about something a little more complex. Hmmmmmmmm

Some light relief in Suffolk

2010-05-11T14:32:00.002+01:00

My first and, possibly, last break with carers' group. I loved it but I think funding is going to be tighter than a duck's you know what in future.

From tap dancing to karoake, to magical mystery tours to the broads with some hopi ear candle massage and a couple of swims thrown in for good measure, it was a full and really enjoyable weekend. The piece de resistance being, sharing chalet with my mate Hayley, the friendliness of other carers I met and then meeting up with 2 other good friends (who travelled to meet up with me) on Sunday. Not forgetting the natives...squirrels, ducks and other types of birdies. I was told there were otters in the lake (on the grounds of the leisure park) but, sadly, didn't get to see them.

Now it is back to reality and I am very tired (everything seems to be coming back in at me). Had plan to visit a respite place today but am wobbling all over the place..so staying put, sedated and resting as much as I can.

Have some happy memories to carry me through today :>)

The reluctant prostitute

2010-04-27T17:42:00.002+01:00

Bare with me here cos am just thinking aloud.

I don't like sex. Maybe that is shocking to read> Maybe that sets me apart from most of the rest of the species but it is fact.

I find it uncomfortable, complicated and frustrating.

I am a sexual being and I understand how to make the best of myself....usually for myself as well as the people I am going to be around. Viz a vie a night out.

However, sexual acts, with others, I view as purely perfunctory...mostly to keep the peace and am internally breathing a sigh of relief when the act itself is over although...it warrants a bit more acting afterwards....again to keep the peace.

I don't know exactly why. It doesn't go with 'Bipolar' territory. Or so I have been told. I wouldn't actually know...because I only know a handful of people who have bipolar disorder and they are alot more sexually active than I am (if their words are to be believed). I can't talk about other people's sex lives or drives with any certainty..cos I am not them and don't live their lives.

Some people might think "Why is she writing this and why now?" Weeeeeeelll...was having conversation with a friend and they were talking about a theorist called Simone Weil. A woman who, again by all known accounts, had no interest in sex.

I said..something like "I can relate to this woman" although I know little of anything else about her but am going to find out. She interests me enough to start reading up.

For me it is not that I have no interest in sex or sex drive (erratic as it may be)...I just find the pre-conceptions, expectations, possible demands, assumptions that go with sexual relations (and based on most previous experiences of sex...lots of mess for not much pleasure) put me off before I even start to feel horny.

The rare times I have enjoyed it, have tended to be because it was more impulsuve, most probably more base animal than anything. Allowing me some freedom that I feel I don't have when it is part of a 'relationship'.

Perhaps, it is something to do with my illness but I think it is more to do with me....things that have happened in my life. Not just sexual but 'relationship' wise and the sort of person I am.

In spite of being 'the spikey fridge' around the sexual act, I crave affection. I would say I need affection but because I get so little and am still alive, assume it is more hunger. I see affection and sex as 2 separate entities. I totally get that it is possible for the 2 to be combined but I have to say, again due to my experiences, usually sex is one thing and affection is the missing link.

Hmmmm....I don't see myself as needing or wanting therapy to get to the bottom of this and make me a 'normal' sexually functioning person.

I do get really pissed off with myself at times for having sex when I don't want it (that is because I am in some kind of relationship and appreciate the other person's need for sex) but it is a type of compromise that I am prepared to compromise on. That sounds sad and it is for both of us...but don't be telling me to "Come out of the closet" with the boyfriend. It ain't that simple. If it was, I would have come out of the cloest years ago!!!!

But oh for some affection....there is something that reinforces the positive, a sense of worthiness, an acceptance of my being (as an individual)without demanding something else and a sharing with another person, something warm and comforting, which is pleasureable to me (and hopefully to them) on the rare occasion it happens.

Ho hum. Maybe, I should be bawling my eyes out here. I think I used to...and then think I should be in therapy to be "normalised". I spent years thinking I was a freak.

Now I know I am freaky...but it is Mandy Freakyness...I am more accepting.

I really do wish things were different or I could meet someone who has similar feelings and wouldn't be expecting certain performances but I don't think life works like that. I am a little too leftfield and is hard enough trying to find someone who accepts me (the bipolar thing mostly..well and my attitude problem) let alone doesn't want to paw all over me for self gratification.

Yeah! I know I am warped but sex is very important to most people. It just isn't to me. I much prefer a good read of a book, half decent DVD to watch and big box of choccies.

C'est ma vie.

Deprived of Dunstable....Desperately seeking affection...well not that desperately but could sure do with some!!!!!!!!!!!

A game of little consononts..or maybe big ones

2010-04-06T23:04:00.003+01:00

Yes, folks, Ms Vordeman may have left the building but it doesn't mean the fun and games have to end.

Think of your favourite or actually any MH related word (or sets of) that you can fit into 9 letters (jumbled them up) and put them up in the comments box.

Let the lurkers have a field day with their gray matter. Ha! Ha!

Here's another mix to get you started:

ZENZOBZUB

Techy problems and divine intervention...I think not!!!

2010-04-05T11:50:00.002+01:00

Everytime I try and access this site via 'itsallabouttheprophets' route, I get a message warning me that the site isn't certified....even if it's owner is certifiable.

I actually tried the 'Google' search engine route and it bought up a link to a Catholic church site called the same. Actually, not really that surprised but was the best laugh I have had, so far, today.

Haven't foggiest how to resolve issue so am going to google the other title, which brings me straight here.

Not that I have much to write so heading off now.

And who will care for our young?

2010-04-03T11:54:00.002+01:00

Was touched by communications from a teenager, who is struggling with their illness, with no support from services (due to their age.

Having spent years..mostly in vain...trying to work with services but occasionally making some progress in them working for me....and,hopefully, putting positive suggestions into the equation (maybe they are totally ignored as the steamroller rolls ever onwards but some of us have to try)

Anyway...the reason for this post is that I am quite appalled that young people (those under 16) are excluded from care support...or so it seems..and would welcome suggestions on how young people who are in crisis, suffering mental distress and are swamped by this world can get help.

Are there networks, already out there, that they can join?

Are there phone support lines available?

Are there any kinds of therapy that are out there and can be accessible to them?

And a biggie....any suggestions on coping skills, things that have helped other young people to work their way through. This could be through personal experiences or from knowing someone who has/is suffering as a young person and has found positive ways of coping.

If anyone can offer advise or wishes to share their experiences on any of the above, please do post in the comment box.

TY

A voice of reason.... beyond the brain washed

2010-04-02T13:52:00.002+01:00

http://www.zenasylum.com/

It's a matter of choice. Ha! Ha!

Long term Lethargy and other legacies of love and brain function gone a bit weird

2010-04-02T13:28:00.002+01:00

Haven't posted for maybe too long and maybe not long enough...dependant on whose reading and where their morals or whose light beam they are caught up in. As it is actually down to me, am posting now.

All that glimmers is most deffo not gold!!!! That statement is not as random as it appears. The truth of the matter is it doesn't matter how much you try and cover up the smell, shit still smells of shit!!!!

Captain Non-Sensible's Log Stardate today:

After a fractious couple of weeks due to uncertainty of being able to get access to a lawyer, it now seems that I will be going to the old smoke (thanks to friend who has car and has been kind enough to offer to take me) to meet with said lawyer and the 'list of concerns' that I think need addressing in regards father's needs and mine.

In the meantime...due to personal flaking...another friend is acting as interim representative and has made contact with MP. I feel I can longer communicate with Trust management because it has all been 'verbal' on their part. Have had fekk all in writing about anything from Dad's care, to the post suicide attempt report, to what care plan has been put in place for him or who is actually taking responsibility for what, where, when and how. No, I am not surprised...simply worn out.

The Direct Payment which I was asked to open a separate bank account for back in December has not materialised. I have been 'verbally' informed, the paperwork has been sitting in some Social Services Administrator's in tray since January.

I have been told many things that have added up to nothing more than me still chasing tails and trying to sort things that are really beyond me.

The only way forward for me is to have a lawyer who, I am hoping, will get written agreements with timescales as well as looking back over the past chaotic few years and make sense enough out of it to guide me through..in line with whatever the law has to say about it all.

There is a view, one that I have shared, that the law is an ass but I hope this particular lawyer is not one (ass) and some justice will be served.

What I have actually wanted was for those who are paid to take responsiblity to do just that and for several members of BLPT (particularly Dad's CMHT..who have been lazy, evasive and if not actually being so, have behaved like they haven't the wits to understand what action has been needed and when).

I don't like the fact it has come to this because I could do without the aggro (I could have done without it since January 08)and have done my bit to lead a quieter, less confrontational life, of late, but that does not make up for a Trust and now Social Services, that, for whatever are only consistent in being inconsistent in the delivery of their services.

And that is very much that!!!!!

The weatherman forecasts long term snow in the UK

2010-01-07T12:38:00.001Z

Incognito....but I think it warrants exposure

2010-01-06T20:57:00.002Z

Ode to Mandy.

Shall I compare thee to the Pennine Way
Thou art more tiring with your tongue of slate Rough winds discomfort thee all day And Luton's lease doth bring a lousy gate.

Sometime too hot the screaming neuron shines And often is her warm demeanor dimmed And every fair from fair sometime declines, By chance, or govt's changing course untrimmed.

But thy eternal ranting shall not fade
Nor lose possession of that bill thou ow'st; Nor shall Louis brag thou wand'rest in his shade, When Appleby's lines to nimhe thou blow'st,

So long as men can cock it up you see,
So long lives this, and this gives life to thee.

AT LEAST THEY DIDN'T DO ME THE DISHONOUR OF COMPARING ME TO A SUMMER'S DAY. If the cap fits then I will wear it :>)

Alive and mostly avoiding shite that is avoidable

2010-01-02T13:38:00.003Z

No New Year's rezzies...no great expectations... but also not trying to allow myself to be dragged into even darker corners by what the next government (whomever they are) are likely to do to the most vulnerable in order to save face. What will be will be and am no amount of venting on a blog (or the tokenistic - to quote the pseudo SU svengali La Creepass K - "faux representation" will make slightest bit of difference.

I have heard that charities are a bit spooked because the reciprocal arrangement they had with government seems to no longer be reciprocal..as in the coffers are not freely available. I don't think they ever should have been but politics and charities have been intermingled in a way not best suiting some of us(and also questionable as in to whose best interest that was in). Still, not my problem. I don't rely on charities to support me and I am relieved because they tend to let people down pretty badly. Season of Goodwill it may be (last dregs) but I won't forget what they did to Tommy.

Anyway, I am AT SOME POINT, going to be getting a direct payment. 3.5 hours per week of carer's time to do things that are 'therapeutic'. 6 month agreeement with review at the end of it. I think it will be 6 months only because (if nothing else) the cuts in public spending will most probably be the nail in the coffin of such things.

Dad is (if things go according to most recent plan..they have tended to change as each week goes by) moving into the care home on Monday. Everyone has a view on care homes. My view and that shared by Em is this is as good as it gets for Dad...certainly for forseeable future. The home is a bit like a Guest House in appearance, internal decor etc. Our major concern is quality of care and both the manager and deputy manager have bent over backwards to help us to help Dad and although I can't see into the future (and know what the care will be like) it is better than some of the places there are on offer and I hope he will find comfort and something resembling proper care there. Is much freer than that shitty unit...and we can visit (more or less) whenever we want to and Dad wants us to.

Has been nightmare trying to organise his stuff but we have managed to get what he needs from the flat to the home and went on big shop to buy him new things (clothes etc). Was pretty grim sorting his stuff..because all memories from the flat were shit ones and was very personal thing to do..but it had to be done and has been.

Removal firm clearing furniture mid-week and then, hopefully, will be a fresh start for us all. I don't know how Dad will be...whether his state of mind will improve at all but think it was never going to improve in hospital, or in that flat. Pumping drugs into people and then leaving them to fester, I don't think, is the answer but Dad also has to want to have a better life..a liveable one. That is out of my hands. I have done all I can to get him to this point...I really now want to focus on being his daughter (and maybe a more one dimensional daughter at that)..and to focus on me.

I feel that it is now my time..whatever that actually pans out to be. I want to be a bit more selfish and free to do things without having to fret or deal with incoming demands often veering towards burdensville (real or potential).

Am hoping for something like a thawing out period. Where there is nothing that HAS TO BE DONE.

Apologies to those who have tried to keep me updated on latest goings on : politics, representation, NHS wise but mostly (as in title) I have been avoiding that stuff. It irritates the hell out of me and is not like I can change anything...all I can do is filter out the stuff that gives me nosebleeds.

2010....could be a better year. Then again...Ha! Ha!

I'M FUCKING DEPRESSED AND NOT GOING TO APOLOGISE FOR IT

2009-12-02T17:00:00.004Z

Nor will I apologise for not 'conforming' to the 'accepted norms' (heartily reinforced by MH moguls) ...and if they lower themselves down from their ivory towers and read this - Yes you are all useless, wasting, self serving, wankers who have betrayed people. You should be fucking ashamed of yourselves rather than patting each other on the back and giving yourselves awards for such betrayals.

Haven't ventured myself to other blogs...due to sense that there has been a conserted effort to water down mental illness, to make those who have it feel more ashamed to admit that in spite of the myriad of recovery agendas....propoganda campaigns and the millions of pounds that have gone down the swanny (even the civil servants can't put their hands on the exact amounts)...that there are still many of us flaying about trying to exist...STILL ILL!!!!

I don't need pep talks about personal responsiblity....I get my arse out of bed every morning, keep house, pay bills, go walkabouts...brush my teeth a couple of times a day and do my bit to mingle pleasantly with other members of the race I come into contact with, such times I am outside.

I don't need to be sent newsletters with pictures of 'Recovery Ron', half way up Mount Everest with the by line "This could be you" followed by phone calls from a MH charity asking me for a donation, although the last one that rang got a direct question in regards to where the money actually goes and couldn't answer it. Well, if I don't know where the money is going..then it isn't going from me to them. If I want this stuff, I will go find it for myself...and I don't.

I am heartened by and glad for those who do feel better (or feel they are heading in the right direction) but I am sickened by those who constantly manipulate in order to preserve some central control and dictate over what is other people's states of being and dumbfounded that so many believe the shit that is pumped out or, at the very least, are too scared to challenge it.

Like these organisations have the right to scare people into compliance, whether people believe in it or not.

I am scared of things in myself (my experiences/feelings past and present) but I am not scared of any of them and I won't be mediocritized into 3 point planning a recovery of their making.

Have ventured to Aethelread's blog. I don't blame him for not wanting open debates. Sometimes...the need to hold what there is of the core together is more important than allowing others to have democratic input...and anyway....often as not the pack dictates the level of democracy and don't delude yourself that blogland is any less 'pack' dominated than other walks of life. I certainly have taken a few sharp blows because I have kept comments open. I won't change that but that is my choice. I give out and I take back.....and I will keep giving out cos I am nobody's PATSY!!!!

I mentioned A's blog because of his reference to another pack. I don't do packs anymore and I certainly don't mix well with academic packs because they often miss the plot when it comes to feelings and experiences (real lives) and theorise rather than empathise. Too damn right abuse is rife in care services....and too damn right there is no accountability because that is not what is wanted (on high). It's all seeping through the cracks now with NHS Trusts (at last) being shown up for the messes they are in. The staff will blame the management, the management will try and get the lawyers to damage limit..the government will deny any responsibility..but I sense more horror stories to follow. I can hope that the overseeing bodies have the power to implement change but fear that 'bureaucracy' and pre-occupations of politicians (in regards to personal political survival) will prevent much of anything that will lead to improvements.

So another turn of the roundabout begins.

Someone spoke to me about the need for 'Champions' the other day. I think they saw themselves as a bit of a champion. Problem being they were aligned to another quango which in turn was aligned to several other quangos and so it goes. I dunno about champions but people with some savvy (and resources...independant of government funding) to develop something more democratic is long overdue. Yeah same old same as dilemmas.

Maybe just maybe the government withdrawing funding from charities will encourage them to be more independant.....or they may go under. I would rather have no charities than those acting 'undemocratically'.

And getting rid of the 'Celeb a thons'...as another friend said, those celebs who would turn up at the opening of an envelope to get some publicity...that would be good too.

Would it stop me getting depressed? Nah, but it would stop me thinking that people are being shafted something rottern for the chosen few.

Some truths.....(bullshit free) as told by the man, himself

2009-12-02T16:46:00.002Z

The rise and rise of the bourjois busybodies

2009-12-01T12:16:00.002Z

Haven't felt need to write a blog post.

Illness and winter = intertia

However, and as usual, am jolted back into 'angry mode' by latest politically correct do gooders (all of whom you could count the good they have done on an empty abbacus) laying into Morrisey and his comments on suicide being honourable.

Now everyone has opinions on suicide and more so those who have taken their own lives but what twats me off the most is these 'charitable figureheads' prattling on about the damage Morrisey's views do to others. Bollocks...and utter bollocks that is.

I doubt Tommy's decision to take his own life was based on any celebrity's stance on suicide and I actually think that there was some honour in Tommy's suicide. More so his absolute right to take his life if he felt it the only option for him. Could debate community's and local charity's role in his downfall alongside punitive attempts by MH Trust at providing appropropriate treatment and care for him, as the individual he was. Tommy is gone, FACT and all the meddlings of the middle classes at the 'soundbite' level aren't going to change that or much for anyone else who feels suicidal/attempts suicide in future. They really do over-estimate their significance in relation to real lives and deaths.

Going off on a tangent here because I have many thoughts bouncing around in my head about this....there is and should always be artistic license in an artist's work. I doubt the MH PC police would be seeking to have every copy of 'Romeo and Juliet' banished from the world because one of the key characters kills herself...and certainly her suicide is portrayed as 'honourable' (well I think so...but that could be another cause for debate).

Morrisey is an artist and one whose illness and experiences are reflected in his work. You don't have to like it. Is optional to buy it...but he sings and talks about what is real to him. A rarity in this world of highly commercialised and conveyor belt production music.

I guess if I heard one comment come forth from the mouths of the (doing nicely out of this racket) 'MH representatives', I might feel more inclined to let some crass statement by La Wallace go but, for fekk sake, is really like listening to a passerby telling a young child off for stealing a lolly from a shop, when, behind their back, a group of public shcool boys are ransacking the place..and that is giving La Wallace the benefit of the doubt. I actually think she is acutely aware of the games that are being played and rather deal with pressing issues such as the destruction of the NHS and betrayal of people with mental illness by charities...making a comment about Morrissey is more likely to guarantee her getting an interview with the media.

Shoddy, below the belt and typical of how these 'self proclaimed' figureheads behave.

The sooner they fekk off and find something useful to do...like stacking shelves in Sainsburies...the better!!!!!

'Being Boring' .....and other facts of life

2009-11-03T13:42:00.005Z

Know I haven't posted for ages....sometimes I would rather not and so I didn't. Is not like any cake is going to spoil because am not around watching the oven....Lives go on (in their varying ways) and such is how it is.

Blogging today cos I feel like it but can't see it being an everyday thing....it gets pretty monot after a while and I really can't be doing with flowering myself up just to get some attention. I know cynical hag...so what?

I gather (although was not party to any of it...not doing the Twitter thing) that Stephen Fry got a strop on cos somebody made a comment that his work was getting a bit boring.

He was threatening to leave Twitter etc. I found that quite pathetic really..and yeah I know I am not Mr Fry's biggest fan but he is not a child. Someone commented to me that it doesn't matter what walk of life you are in, if you have mental illness then you should be shown compassion (as in I was not showing him compassion). I actually think that it is more to do with dramatics and over-reacting than anything else. Sure the Fry fanatics will be seeing me as Satan's sister but it is about context and it is about what is actually going on in people's lives rather than 1 non flattering comment in an otherwise adoring following. Perhaps he is so cossetted and has got to a point where he believes all he should get is fawning but I don't think that does anyone any favours really.

In fact, I think I should thank those who have taken time to come on my blog and had a real pop (even though some were as true to themselves as Britain's commitment to peace keeping in the world).

I don't actually think it is okay to be spiteful and venal but it doesn't hurt to reality check (even when you have an illness...maybe it is more important to reality check when you have an illness because there is a vast amount of fakery in this world).

Bottom line is, I think, Stephen Fry acted like a big girl's blouse but I understand all is fine in his Twitter camp...apologies and group hugs abounded..and he can carry on Twittering to his heart's content and those who find him a bit boring will, no doubt, steer clear. After all who would want to feel responsible for the man's departure from that arena????

And so my life carries on ('girl interrupted' enough by such revelations to make comment on her own blog). Still waiting for the local MH Trust to make a decision on which care home it wants to cough up any dosh to send Dad to. The preferred one (by all) having raised it's charges and budget holders recoiling at that face. That situation has rattled on for about a month now.

Dad doesn't want to see me because I really am a She Devil who dared to agree with the shrink that he should try and do a few things (OT..such as it is) and coming out for walks with me. First and last rule of being a daughter - when father is ill: You will be compromised to the max!!!! Actually, that is my interpretation. Dad is just saying he is too ill to see me. Could be paranoia on my part but I know Dad and I know he can sulk for the world when he feels he has been treated unjustly (well, everyone can but it doesn't solve anything....except maybe to serve some sense of personal affrontage).

I have made an appointment to talk to his shrink on Thursday...about compromised positions and to ask him if he really knows what the heck is going on (treatment, longer term aims) and my peripheral role as it is).

I have been advised that a Direct Payment is the next step for me and positive noises are being fed back about chances of getting it. I am not going to hold my breath. Am on 3rd care co-ordinator, this year. But if the application is made and successful, I might just get that consistency I need in my care plan...and life. That is consistency outside of myself...which is still a work in progress.

The big plus is the time I am spending with my daughter. We have a once a week (sometimes twice) time that is ours and it is great. Last week we went shopping in Milton Keynes and yesterday we went swimming.

There's still a bloody great hole in my life but accept that it will be what it will be, whilst I carry on carrying on and until such time as. In the meantime, I do what I can when I can and when I can't I don't.

Non revelationary rallying cries from here..nothing to print in a recovery newsletter. It's maintenance as usual!!

There is no normal service to resume

2009-10-09T11:35:00.003+01:00

Having felt slight reassurance from Minister for Care Services who, supposedly, stated that DLA payments were not under threat of being axed, it now seems that there has been a complete change around with charities claiming it is too late to save DLA and government murmerings that is more likey that DLA will have to be reformed (away).

What with time of year, overall feelings of debilitation and lack of optimism about the future of this country (under any government) plus strange goings on at 'review meeting' with Dad and visit to back consultant with friend (and the case of the disappearing and reappearing cyst and her being advised by said consultant that the best thing she can do is pray)...feel like I am living in the Twighlight Zone.

Just waiting for the next punch in the stomach.

Not much more to add. C'est la shitty vie.

Cannot be doing with Autumn...because

2009-10-05T13:04:00.002+01:00

Winter is just around the corner!!!!!

It hit me today. The sudden flatness....the grey dankness of it all.

2 months to Christmas which I am cancelling on the grounds of having not much to celebrate. Real bah humbug stuff.

Managed a walk to local shops and back but felt bleugh. Spent most of day on facebook playing at Mafia. Encitment to violence? Nah? Just something more interesting than nothing to do.

Visited care home with Dad on Friday. Wasn't a good day for doing that because the joys of womanhood arrived and had the dizzy wizzy woo woos. Panick attacked (most of the way) as I walked to town. Don't know how I managed to interact without being the obvious loony daughter. Dad was outranking me on that score by telling everyone he wanted to die, whilst I tried to say that things could get better for him in the home.

It was very nice actually. Have heard such horror stories but this is a small place....bit like a guest house. Houses 6 residents and all the residents there (and staff) are female (something, I think, Dad would be comfortable with...he prefers female company to males). Dad was pre-occupied with saying how his life had fallen apart and he can't get it back together. Hmmm.

Actually, am emotionally barren now...except deeper stuff that wells up every so often and pours out (in private).

When daughter and me visited him again Friday night and he was telling us how he couldn't understand where it all went wrong and how he got to this...I felt compromised. I am trying to help him...but I can't. He is so gone and I can't bring him back. I tried to explain where I think the turn happened but I couldn't explain why (that is somewhere deep inside him..or deep enough for him not to want to share it).

Em and me both feel and shared, with him, our view that the care home seems the best of not many options and compared to other homes would seem to suit his needs, he took some kind of umbridge because he told us it was time for us to go.

He does act like a petulant or sulky child, at times. Is very frustrating and I don't know how I haven't just screamed my head off but somehow I know that is futile. Have felt it best to try to stay calm and then come home and collapse in drained heap.

I don't know whether he will agree to go in the home but I think and feel that if he goes back to his flat it won't be long before he tries to take his life again. Maybe, people think that is over-reacting but I don't want services to take that chance with him.

Oh dear. Roll on spring and hopefully some resolve of this dire situation.

Have planned to go and stay with friends in Derbyshire at end of October. Not in right place to be excited about it but feel the time away might help a bit. Friends there are nurturing and undemanding. Ho hum!

Not merging but drowning

2009-10-01T13:45:00.003+01:00

Actually, the title is not as close to what is happening as could be but is more relevant to what I think is happening to patients whilst the merger/take-over/whatever people choose to call it of Beds and Luton MH Partnerships goes ahead.

I have, as commented in response to Lareve, heard murmurs of massive savings (double figure millions of pounds) needed to be done by my local MH Trust in order to be fit for purpose of merger and gaining Foundation Status.

I had also heard that the merger was imminent but haven't been informed of anything definate, as yet. I am a bit out of touch so it could have already happened.

Makes lastest communication back from MP more poignant to me. He has written to Director of local Social Services asking what can be done for me in regards to my particular needs. That was good of him (and not a hint of sarcasm) because he has been the only person (in postion to do much of anything) that has stuck by me.

With STR worker on extended sick leave and my gut feeling is they are not going to return (and if they don't, they won't be replaced)...and the change-overs of care co-ordinators... and missing (never actually arrived) care support worker, I have no faith that my care needs will be met (with much consistency) by MH services. It would be nice to think that they could but you gotta live in the real world.

So an assessment (by Social Services) for a Direct Payment..and more so if it provides me with someone to escort me to such things as swimming... could fill the gap that the unmet care plan has left. The Direct Payment could provide the person and a set amount of their time and I could pay for transport. Sounds like a fair deal to me. Not sure Social Services will see it that way but I have a dream. Ha! ha!

In spite of the fact that there is minimul support going on here, I think I am doing well not to have lost plot entirely. I have walked to town and back, by myself, a couple of times, and had lunch in a cafe, by myself, and it felt okay. The problem is the blips in between. Like I have a good day and mission accomplished and then go wobbly again (where I am fighting demons alone and losing). Such is the nature of the beast...but no one could, justifiably, accuse me of not trying.

Am keeping away from the co-dependancy relationship that had another violent eruption a few weeks back. Am clocking that habit and that type of co-dependancy break down any chances of having healthier relationships with others as well as myself (not that I am looking for romance nor want it right now)..and is not like I didn't know better or don't. Is just so hard, when you are on your own, not to cave in and that is down to my own weakness as well as others.

As an only child, I should be used to loneliness but the events of my life (personal and illness related) have left me feeling lonelier than ever. I acknowledge that..as pragmatically as I can....but it still hurts.

And I certainly don't need or want a network of people running around doing for me...just some consistency from those whose job it is to provide support...to help me to branch out and maybe gain some confidence in doing things that are good for me. I like the idea of being part of a swimming club but there is no way I could go in cold...particularly as I am going to come out cold (literally not metaphorically..as in from the water). Hmmm...I am certainly prepared to meet services half way. After all, at present, it is me doing all the work. Just can't help visualising it all going tits akimbo again.

Still, I am alive and not crawling around the floor, wailing. I consider that a plus.

For now, doing me the best to hold on to what ground I have and make the best of the good days.

Latest email from benefits and work

2009-09-30T14:45:00.000+01:00

Dear Mandy,

In what may represent a dramatic victory for campaigners, Care Services Minister Phil Hope yesterday told a reporter at the Labour Party conference that DLA is not under threat by the care green paper.

According to the Disability Now website, Phil Hope, when asked if he would abolish DLA after the election, replied:

“No. All the models that we have done have not included DLA. But if people were to make a case to integrate DLA into a comprehensive system, then I'm very happy to hear that case and have those arguments.

"DLA is not under threat and people can be very happy".

For more details and our reaction, visit: www.benefitsandwork.co.uk/news/latest-news/1110-dla-is-not-under-threat----be-very-happy-says-government-minister

We know that some people will claim that the minister’s comments are evidence that campaigning to save DLA was unnecessary. It’s a claim, however, that can only be be made by ignoring such as the following.

1 Earlier this month the DWP press office said in relation to whether DLA would be scrapped: “It depends on what people say in the consultation. We need to see what people say when they respond.”

2 The same minister who is now saying DLA is not under threat wrote to MEP Liz Lynne just a fortnight ago stating that: “. . . this is a consultation exercise and no final decisions have been made about which disability benefits might be involved, or how they would be affected.”

3 The same minister also refused to rule out the possibility of DLA being axed in an interview earlier this month with Disability Now.

4 Last month CPAG claimed that it had received assurances from ‘senior sources’ at the DWP that DLA was not under threat. Just four days later CPAG revealed that it had “subsequently been contacted by the DWP who have said that no decisions have been taken as to the future of DLA whilst the consultation is ongoing.” CPAG then went off to lobby the Department of Health on the issue.

5 For almost two months national charities such as the MS Society have tried, but failed, to get clarification from the government as to whether DLA would be affected by the care green paper.

6 Just last week, David Behan, the Director General of Social Care at the Department of Health, published a blog post on the Big Care Debate website clearly trying to reduce the flood of hostile responses. He could have easily done so by saying outright that DLA would not be affected by the green paper – he didn’t.

The reality is that, if the government have now stepped back from an attack on DLA before the care consultation has even ended, it is because of the literally thousands of angry responses on the Big Care Debate website, the thousands of signatures on petitions, the torrent of angry letters to MPs, the motions before the Scottish and Welsh assemblies and the growing pressure from disability charities who were themselves under enormous pressure from outraged claimants.

It’s because the focus on the single issue of benefits is fast becoming a public relations disaster for a green paper signed by no fewer than six secretaries of state.

Above all, if there’s been a change of heart, it’s because you have fought so effectively to protect the benefits of disabled people.

Here at Benefits and Work we don’t know if the fight is yet over for DLA, but we do know for certain it’s only just begun for AA.

Good luck,

Steve Donnison

Response to letter from Minister of State for Care Services

2009-09-27T18:56:00.002+01:00

Dear Ms Selous

Thank you for writing to Mr Hope, Minister of State for Care Services, on my behalf and for forwarding the response to me.

I have read through the response and am not reassured that my care will improve should the DLA I receive go directly to Social Services. I write this because I do not, and have never had, any care input from Social Services. I wonder what the ‘proposed role’ for Social Services is in regards to people with mental illness and more so those who do not receive it already should the DLA they are receiving be transferred into a more centralised Social Services funding pot. As you are aware, my care support (such as it is) is provided wholly by Bedfordshire and Luton Mental Health and Social Care Partnership. I have found that a bit ironic because ‘Social Care’ as such, does not come under the remit of the Trust (or if it does, I can not see how that is being done) but is still provided by the central Bedfordshire Local Authority. I do know that mental health services have had a role in trying the help people get ‘Direct Payments’. However, I have on a couple of occasions sought to progress a claim in order to fund someone to support me, in regards to social inclusion (activities within local community). I was even told I could apply and then my care co-ordinator left the Trust and the replacing care co-ordinator said my needs could be met elsewhere. As yet, I have not been able to start my CPA5 care plan (to go swimming once a week) because the Support Worker has been on annual leave and then sick leave for 2 months now. I often find that plans to support my ‘progress’ are thwarted by continual turnover of mental health staff and/or a lack of their understanding on how to progress their own bureaucratic processes.

If the Government believes that that there is a case (as stated in the letter) for Disability benefits and Social Services to be merged into one system, I would ask how will those of us who are not provided care by Social Services be included in future care provision or whether we will not be included, although our benefits may be taken from us.

I would also re-affirm that since I have received Disability Benefits, I have been able to use the mobility allowance to pay for taxis (as I am unable to travel very far, by myself) to get to things like doctor’s appointments, to visit my father in a psychiatric unit and to appointments with my psychiatrist. I have one friend with a car, who has previously, taken me places if I pay petrol but she has herniated discs and a cyst in her spine so can no longer do this for me. If I were to lose this allowance, I don’t know how I would get about. I certainly am in no position to go to a public road show meeting about the Green Paper in Bedford. I rarely go outside of my home town of Dunstable, on my own, and have no one who is in a position to take me. I think there is an element of disability discrimination in this regards because there is an assumption (or it appears that way) that mentally ill people can either travel about by themselves (I am sure some can but a big part of my illness is agoraphobia and I need a lot of support in getting about) or that they have carers/close family members of friends who can help with their travel. My mother is dead, my father has been very seriously mentally ill for many years and is no long able to function within the family unit (again such as it is) and my daughter is at university and working and has little free time. She helps when she can but it would be unfair of me to rely on her to any great degree because of her commitments and a right to a life of her own. The only close friends I have, have serious mental and physical problems and are unable to help either. I have no family or friend network to support me on a regular basis. I am mostly, on my own battling with my illness as best I can.

I am sure that I am seen as someone who doesn’t try hard enough but I have done my best to sustain well being through using my DLA to develop my garden and to make cards. I would like to be more involved in community activities but I am not able to do this by myself (due to inconsistency that goes with my illness and agoraphobic states). I am afraid I do not see how losing my DLA and Social Services having that money will be supporting me to be self empowered, motivated or creative in any way. Actually, my view of such an outcome is that I would struggle within the system because it doesn’t seem to respond to the needs of people with mental illness nor does it, or existing MH Services, encourage and have consistency with itself to allow people access to ‘specific payments’ although they are supposedly there for people to ‘choose’ care that suits them or have staff able to provide care plans, with any level of consistency themselves, that are agreed.

My experience of the choice agenda and ‘agreements’ made with government bodies is that there are very few choices available and the ones that are (for reasons other than patient non compliance) do not get followed up on.

Sorry for the length of this letter but I think that mentally ill people are often forgotten in the greater scheme of things and I do think as a section of society there is more exclusion because access to information is not that easy. Obviously, I have a computer and an interest in what happens in a macro way (as well as on a personal level) but there are many mentally ill people who don’t have computers and are not informed (because they don’t go to places where the information is). I don’t know how barriers can be overcome but I think there is a role for all those supporting (in a professional capacity) or representing people with mental illness to be made aware of The Green Paper and pro-actively providing information to people so they have an opportunity to put their views forward, although the consultation will be over in November and that gives little time for more proaction to take place.

I have put my views on the government careandsupport online site and hope that many others have had the opportunity to do so and taken it up.

Yours sincerely

Mandy Lawrence

The truth about cats and dogs and MH services

2009-09-18T19:49:00.004+01:00

Where do I start? More importantly does the crap ever end?

The investigation...the one that Beds and Luton Partnership Trust put in place because they didn't believe dad's suicide attempt was Serious Untoward Incident...hasn't even started yet. This, in spite of Director of Community MH Services insisting (during the call he made to me when he got back off leave, 2 weeks ago) that the designated person would be contacting me. Needless to say they didn't contact me.

I rang the Director back about this..and the case of the missing CPA 5 (and lack of cover/contact time for STR worker whilst she has been absent)..and dad telling me he has been taken of all medication (and is being given it whilst he is under anaesthetic for his ECT!!!!!) and that I am not sure quite what is going on in regards to his treatment or long term care planning. That is apart from father showing me a leaflet for a local care home and his care co-ordinator having no contact with him,since providing said leaflet.

The Director got very busy with the emails.

Following on from this, I got a rather abrupt email from Director of Acute Services informing me that the acute unit manager and CMHT manager would liase and upate me on what is actually going on in regards to dad's care. Yesterday, I got a call from a nurse, at the unit, inviting me to the ward round meeting on Monday. She didn't know what time it would be and then I heard the manager, in the background, telling her she needed to contact dad's care co-ordinator to ensure she would be at the meeting. The nurse then advised me that she would ring me today to confirm the time. I haven't received that call!!!!

The person designated to carry out the 'post suicide attempt investigation' sent me an email asking for my phone number so she could contact me. She did a few days back. I was out at the time, so she left a message. I rang her back. She didn't know who I was (even though she had sent me an email and left a message on my phone) or what I was calling about. When I reminded her, she said she hadn't even looked at any of the paperwork yet and would be doing that the next day.... after which she would ring me (sometime that day to tell me how she was going to proceed). Guess what? She hasn't rang me.

Have been ringing Dad daily. ECT doesn't seem to have had any affect, except to mess his short term memory and spark the dizzy spells off, again. He keeps falling over. From our conversations is clear that he is paranoid about what is being done to him and suspicious, quite possibly delusional.

Daughter and her fella came with me to tonight's visit. Fist time in the car with Em and me. I had not long taken a migraine tablet as had thumping head all day and aura was manifesting in my right eye...so I was a bit fragile and not on the ball but we got there in one piece (in spite of me giving wrong directions).

Dad managed 20 minutes before he got too anxious and asked us to leave. The whole time, his eyes were roaming around and if anyone came near him, he got jittery. He told me he had fallen over twice today. I asked if anyone came to his aid. He said the nurses and other patients did. I asked if he had seen the doctor about it. He said he had but the doctor seemed 'dismissive'. He said his care worker was supposed to see him but hadn't and that he hadn't heard from his care co-ordinator since she left the leaflet about the care home and he told me he has stopped eating. Now...objectively...I can see that maybe dad's memory might be playing tricks on him but I can also see that it's all one big fucking cock up...across the board.

There seems to be no cohesion, proper communication or the vaguest idea of what people are supposed to be doing (let alone them carrying those duties out). I wouldn't trust these people to run a tombola stall and my dad is in their care. Frighening!!!

In the car afterwards, Em commented that the staff should really be checking that dad is going for meals and encouraging him to eat. I said "Honey, I don't know what to do anymore. I feel like when you go in these places, you are at their mercy and they will do what they will (often, in my eyes, amounting to torture) and that is why I will fight tooth and nail never to go in them again". She said she understood why I hated that place so much.

Bless her. Not long after she left, she texted me to let me know she loved me and hoped I had a relaxing evening.

I can't relax....okay the lozees numb me down a bit - actually help me to get through each day...but I won't be able to relax until I have some reassurance that dad is safe, that there is a care home for him (one that 'in present climate' matches at least some of his needs).

Feel like I am on one of the levels of Dante's Inferno....purgatory, for an indefinate period. I don't really know what is going on in Dad's mind but I reckon he is there too.

Oh! and before I drop a whole loz and try and let go for a while...my acting care co-ordinator rang me in the week (most concerned about me). She said that she would leave it with me to ring her again, when I felt the need..and when I did she would talk to me (or, if out of office, ring me back as soon as). I rang the office today. Left a message for her to ring me back...no call.

The next wanker to come on this blog and wax ignorantly about how 'cushy' my life is..will get the 2 finger salute and fekk all else!!!!

Missing Norm

2009-09-15T22:45:00.002+01:00

and I ain't too proud to admit it.

I can't be doing with going loco in the wee hours and not having my palaroonie to help me through. Plus he does a great line in gallows humour!!!

The Truth About Potty Training

2009-09-15T16:06:00.002+01:00

I am not sure where this is going but there I was, sitting in me bath, pondering... as I do...random and relevant stuff that all seems to merge into one and I realised that I had spent my afternoon waiting around on a call that I am not likely to get.

Three guesses who it was supposed to be from? Actually need to give more of a clue but most people would be able to generalise that it would be someone at the local MH Trust...due to necessary but tiresome communications I have tried to uphold with the organisation for longer than is tolerable for most sane people. It's okay, I am mad. Not like I have anything better to do.

So the truth about potty training is that once you get past a certain age is too late. I would explain but my brain is still trying to formalise the links between my thinking on 'personal trauma/damage'...the strange fekked up life that follows and the 'care' condundrum/obstacle course that gets harder to work your way through the further you get into it.

"Jump ship". I hear the cry. If only I could but I just don't trust the care system to make things more comfortable/safer/tolerable for my father. I have given up expecting anything in regards to myself. Saves the disappointments of 'pretendy care plans' that lie festering in sulks in overflowing intrays.

Somewhere in all this there is another chain of thought going on. About the fool in Shakespear's plays. What a key role, they played. The wisdom through the mockery (particularly in King Lear). Anyway, that is written, if I can focus my thought long enough, because there is a level of acceptance of lunacy in life (even amongst the solidatory circles of 'the ill') As long as you play the game...you know the rules and you don't overstep the mark. After that, you are sent back to Coventry..to twitter along to yourself (trying to work out just how deep the rot goes...and not just internally either but throughout human kind).

To be honest, I am not in the best place to be working all this through. I know there is a mania that is sort of troughing into depression every few hours but that doesn't stop my brain chundling.

I think I am pretty hurt at the moment...not by people I don't know (who play silly beggars with me). I have taken much more damage from people who I let get close before..to know who to keep at arm's length and beyond. It is people who know me...and supposedly accept me as I am...then expressing surprise and disappointment that I am behaving 'outfield'. Tut Tut Mandy. You really should know the boundaries by now.

So deflated....I am going to skuttle off and find the quietest place of my 'state of being', a la sedation city and let it all go because it will be what it will be. I will be what I am and right now there is fekk all I can do to stop it.

Love the latest News Biscuit Story

2009-09-15T10:50:00.002+01:00

Well, no need to worry about Ryanair charging for emotional baggage
...you can use your DLA to pay for the excess. Ha!

Who really calls the shots when it comes to care?

2009-09-14T16:26:00.003+01:00

Accusations of being demanding (amongst other compliments that have been hurled my way recently) got me to thinking how demanding I actually am.

Par example: I am supposed to (so it was agreed in my CPA meeting in Spring) being having a care support worker, to visit me once a week. They would be taking over the role that the STR worker had in regards to my care plan.

Anyone who has read my blog, over a period of time, will know that the care worker hasn't materialised. I can only assume because of lack of funding..what with Beds and Luton MH Partnerhsip Trust waiting for a take over bid to be completed. Hence, spending on staff (other than management level and above) has been put on hold.

So, the make shift agreement with acting care co-ordinator was that she and STR worker would alternate weeks until such time as.....I don't know.

After my father's suicide attempt, the care co-ordinator felt it necessary to keep a closer eye on me (due to my state at that time). Problem was STR worker went away on leave...care co-ordinator covered for this but since STR worker has come back from leave, they have gone sick. I haven't seen my STR worker for 6 weeks or care co-ordinator for 3 weeks.

I haven't been ringing up anyone demanding to see them. I did have a really bad day and rang the CMHT offices for support. Was advised, by duty social worker, to go for a walk. In the end, I took extra sedation.

The balance here lies not with any demands (pardon me if I refer to them as needs) on my part but with a system that is in some kind of meltdown.

I have to do a daily check of my diary...so's I keep on top of things that have to be done. On checking it today, I have a CPA5 review meeting tomorrow.

The CPA 5 was put in place by my care co-ordinator. I had to 'make progress'. This, it was agreed, would be done by my STR Worker taking me swimming once a week. Granted the first of those appointments were cancelled because there was a problem with father (mix ups about sending him on home leave from the acute unit) and I had tried to ensure that this would not happen...and certainly not so soon after his suicide attempt. The confusions over his 'capacity to cope at home' got me in a frenzy. Call me a drama queen but having had to organise emergency support after his suicide attempt, I didn't think it was safe to send him back on home leave.

Again, anyone who has been reading my blog,longer than a week or so, will know my father has been desperately ill for 2 years and I have been constantly trying to get the right care in place for him during this time.

Back to the CPA 5. The swims were put on hold, for 2 weeks, when my STR worker went on leave. Fine by me. It took 2 weeks (from being back off leave) for them to contact me to organise the next swim and the day before that was scheduled to take place, I got a call from CMHT saying STR worker was on sick leave. So I am to have a review .....based on the Trust's 'recovery model'...on something that, through no fault of my own, has not taken place.

I am not angry with STR worker. She can't help being sick but the care co-ordinator was insistant (I think because of pressure from a higher management level) that I had to do complete this CPA 5 programme.

I wonder if I will be blamed for the CPA 5's lack of completion?

And you know what...if I believed the care component of my DLA would go to a service that could deliver in regards to my care needs, I wouldn't begrudge it. If there was a guarantee that the care would be there as agreed, that would be okay with me. The problem is....the money will not go to support people's care needs. I am not sure where it will go. In that regard, I would rather Anon got his/her tax back because I would rather they had it than it be eaten up by a system that places demands on people with disabilities but then does not uphold it's end of the agreements.

I am just so grateful that I have friends and my daughter and her boyfriend(not without their own issues/demands on their time and lives to be getting on with) who rally round to take me places..or I doubt I would get about at all.

And I am sure I will be shot down again for not being able to get out and about on my own as the norm but that is how it is for me.

I have lorazepam and I use it as necessary (most probably more than I should) but without it, i would be totally fekked.

C'est ma vie.

Rising unemployment blamed for 'New Deal' pull outs

2009-09-13T13:53:00.002+01:00

By John Plummer, Third Sector, 8 September 2009

Job cuts at major charities including the RNID

Several large charities have withdrawn from key government welfare-to-work programmes because they are not proving financially viable.

The RNID has pulled out of eight New Deal for Disabled People programmes and three Pathways to Work programmes, worth £500,000, following a review of sustainability. Fourteen staff have been laid off.

The Department for Work and Pensions established the initiatives to help people on incapacity and disability benefits find work. But rising unemployment has made targets difficult, the charities said.

Michael Adamson, executive director of individual services at the RNID, which had subcontracted work from prime providers, said the problem was compounded for charities because they dealt with the most hard-to-reach groups.

"We could not sustain the contracts at the prices available," said Adamson. "We need to get a fair price for what we do and recognition of the distance from the labour market of some of our clients."

Action for Blind People shed nine staff last week after ending Pathways subcontracts with private providers A4e and Work Directions and employment charity the Shaw Trust.

Elizabeth Percy, acting head of regional services at Action for Blind People, said the contracts could have generated £121,000, but the recession and the complex needs of its beneficiaries left it with no choice.

"It's a fair blow," she said. "It's income that we rely on but it just wasn't achievable."

The RNIB, which passed on Pathways contracts in England to Action when the two charities formed an associate agreement, has abandoned one Pathways subcontract in Wales.

Last month the Shaw Trust, the largest voluntary sector provider of employment services for disabled people, blamed the DWP funding structure for its £2.8m annual loss.

Employment minister Jim Knight said prime providers were responsible for managing subcontractors.

"Providers may have underestimated challenges and set high targets but we are working to improve performance," he said. "Many of the contracts run for three years and, due to start-up costs, providers would not be expected to make a profit immediately."

I believe in a free press

2009-09-13T11:18:00.000+01:00

They should have one in every hotel room.

Practising my right to free speech

2009-09-13T02:09:00.001+01:00

I can't stand radishes.

And that is my free speech for today. More to follow, tomorrow!!!!

When does the negligence end?... and being the wrong side of mania

2009-09-04T11:20:00.004+01:00

I have noticed myself becoming busy (frantic busy). This is most likely because I am starting to feel pressure being put back on me, when I was thinking I could let go of it. For the present Dad is relatively safe. I am not totally comfortable with how he is or the treatment he is getting but where he is is the best place for now. That is saying something, with my view on acute care but is the truth as I see it.

Friend's MRI scan showed something up. Something that is possibly treatable but had been left (due to apathy of doctors) to grow. Honestly, after a year of going back and forth to GP, you'd think they might have given a bit more thought and respect to her and particularly in light of fact she had pre-existing back problems.

She wants to sue for negligence. I think she has a fair case as it is only since she changed her GP to my practise that the new GP referred her to a physiotherapist who then referred her for latest scan.

What is it with doctors? Is it because someone has a diagnosis of mental illness that they automatically assume patients are 'imagining' things? Is it lack of proper listening skills, not wanting to examine too closely what is happening nor to take time to refer people on to specialists? Whatever, my friend now has more serious phsyical problems to deal with and something that even the phsyiotherapist said isn't that easy to treat.

Problem is my friend doesn't know where to start. There are trails of x rays and scans, letters to and from consultants...and the gap where the previous GP did fekk all. Different hospitals etc. She has asked me to write letters for her. Oh dear! Flashbacks a go go. Is easy enough for me to find numbers of hospitals for her to ring to get copies of x rays but I can see this woolly mammoth of a bureacracy looming ahead....and opening its enormous mouth to consume us.

We went to the PALs Officer, at local hospital, yesterday who soon claimed non existant responsibilities when friend said she was going to claim for negligence. I guess that is fair enough (she is but a mere pen pusher) but friend now has the 'Complaints' and 'Advocacy' leaflets. Ho hum! I think what she actually needs is a lawyer and a damn good one because, once you start a negligence claim, the NHS brings out the big guns (who get paid big money to make patients look like villains rather than victims).

I don't even know if there are lawyers who take on individual negligence claims (well apart from those who advertise on TV but they seem to focus on businesses not the NHS) and seems less likely if the person needs legal aid.

Nosebleed, nosebleed!!!

Sedation time.

Looking at the positives....Em passed her driving test this morning. It was her second attempt but she done really well (only 2 minor faults) and so can now look to getting about without having to cajole her fella or wait around at bus stops.

We are going to a local gig (A Ska night) tomorrow. In the meantime, I am going to work on keeping myself calm and less busy.

Other things

2009-09-01T20:21:00.003+01:00

Haven't done a blog post for a while. I got really f'ffed off with blogging and it had started to become a very insular and negative thing for me. I threw myself into facebook with gusto....and I really like it there. I know it isn't everyone's cup of tea but people can leave it alone if they don't like it.

What I like about it is that I come across people sometimes through doing the same quizzes or sharing concerns over 'serious' issues or cyber games or it could be that they make me laugh or show care about me. It is pretty diverse and it allows for diversity.

I have to say, I have yet to come across any STIGMA....that cancerous evil negative thing that crawls around waiting to pounce, hidden behind a mask, from Jo Public (if you believe the hype). Most of my friends there don't have illness, although I don't prefer them to friends who have illness. I don't need them to prove that I am 'normal'. Either I have chosen them or vice versa because we like each other and that is what it should be about. I can't be arsed with adding the world and it's mother to get my numbers up...plus I don't think I could keep up with 100 plus people. Needless to say, I spend alot of time there...Fairyland is addictive and I have built up a mini network through that too.

Outside of Cyberworld I have been making progress against the agoraphobia. Been on a fair few walks in beautiful countryside with my friend (sometimes with one of her goats, always with her dog...my travel buddy 'Sally'). I have, once a week, eats with my daughter and her fella. We now go to restaurants (with special offers on). Dad has managed to get out with us and we took him for a carvery meal. I thought (a bit too prematurely) that was a positive sign. Since then he has taken another nose dive.

The collection of filled pots in my garden is growning, along with the contents. I am growing some herbs from seeds and others from the early stages of development. Next year, my aim is to dig up a section at the bottom of my garden and replant the herbs there. I have a bird house attached to one of the water pipes on my outside wall (too high up for the cats to get at). Hope this serves to keep some little birds safe in winter. So all in that particular garden is quite rosey!

After flapping about the stall I have booked for the local festival and trying to mass produce (fit to scale of capacity and materials to hand) cards, have decided that the therapeutic reason for making them outways desire to impress or sell really. I am back to making what I want and if they sell, they sell. If not, I will downsize to making cards for friends and fam. The priority has to remain the pleasure of creating.

What with that and going to a local music festival last Saturday, my life has been busy and in positive ways. Was totally pooped out on Sunday but it was worth it to see some live music. Dr And The Medics were the main attraction and put on a brilliant show.

Finally, before I chill down for the night, I saw the new shrink today. I was all geared up (as written elsewhere) for clipboards at 20 paces but no need. I can tell, after about 1 minute, whether or not things are going to be okay. It is about how I am welcomed and how the conversation gets started. It started well and I was pleasantly surprised that the doctor was not only conversant with my and my father's situation but empathetic and not wanting to mess up the status quo. I think he realised that I am doing okay..all things considered... and to add an unkown quantity (like Lithium) into the equation was too much too soon. There is an agreement for me to continue on lorazepam until such time as I am ready to withdraw (quite alot of that to do with how stable Dad gets..and what the long term care situation ends up being). Perhaps, and I am not afraid to admit it, it isn't just about my father. He hasn't caused my illness, his illness and deteriation have made me worse but I was ill long time ago so I don't expect to suddenly be able to withdraw off benzo's if his situation improves (or proper long term care is provided). That is something I will need to discuss, at a later date, with the doctor and look at the alternatives and support that will be provided as and when.

For now, I am doing alot better than I could be doing. I don't assume it will last..nor do I expect to suddenly get worse. I simply know that my illness could get worse and might (at some unknown point). I live in the day...and that is as good as it gets..pending..something or other :>)

Letter to MP..about personal and wider issues

2009-08-25T13:13:00.003+01:00

Won't go on about it..will just copy it..think it speaks for itself.

Dear Mr Selous

I am writing for 2 reasons. Firstly, to update you on my father’s care. He is now in Townsend Court Psychiatric Unit and has been there for a few weeks. I have visited him on several occasions and kept daily contact. I have also been liasing with Chris Bradley-Rushe, up until his annual leave, and with another Director until his return.

My father is mostly morose and despairing but, at least, he is safe for the time being. He informed me that he is going to have ECT (as a kind of last resort) but need to check this with a senior member of Townsend Court staff. I have concerns about the ECT but I appreciate my father needs to make decisions about his treatment as fits his ability to do so (with support of MH staff) and will abide by what he thinks is best in this particular regard. I do however, have continuing concerns about his long term care and hope that these are also being looked into by mental health professionals. My father insists that he does not wish to return to his existing accommodation and I feel that for him to be made to return there might well lead to another suicide attempt. This, I believe, can and should be avoided.

My second reason for writing is the Government Green Paper on Care Reform. I am quite angry really that people with mental illness have been, and continue to be, mostly excluded from this consultation period. I only found out about it by a friend on the internet. When I spoke to other people I know with mental illness they had heard nothing about it and more importantly, the vast majority of them do not have computers or access to the consultation process. This means that many important views will be missed.

My own personal view, based on the quality of my life, is that Disability Living Allowance provides me with access to interests and support, I otherwise would not get. For example, I use my mobility allowance to get taxis to see my father and to get to appointments that must take place. I also use it to pay for the petrol when I need to get out or to pay for their bus fares on the rare occasion I have to use public transport. It does not fully cover these costs but it helps in part.

I was assessed as needing DLA not just because of the agoraphobia I suffer but because the assessment process included a quality of life aspect. It was deemed it would help me to be more involved in things. It certainly has enriched my life because I have used the money to buy seeds, plants and flowers for my garden and find tending these and sitting out in the garden very therapeutic. I also make cards…a hobby which I can do from home and with a friend, again, providing a therapeutic distraction from my illness and positive outlet.

I understand the debate around the care component but in all honesty, Mr Selous, DLA was, in essence, provided to stop the severely disabled being caught in poverty traps with no quality of life. For sure, I would have very little quality of life without DLA and my biggest fear is that it will get eaten up in a Social Services pot and people like myself, who have no contact with social services, will have no personal capacity to have any quality of life or appropriate care from that organisation. In fact, my experience of dealing with social services for my father is that they provided minimul support -15 minutes of a Private carer’s time each day (he has to pay for his meal service) and then discharged him from their care.

I think there are deeper issues than saving money from those who are already struggling financially. I appreciate that the country is in a financial mess but that is not the fault of the disabled and they should not suffer because of it. The deeper issue in regards to care is to do with the ability of the public sector to deliver the right care and when it is needed and my experience of it, is that without you, both myself and my father would not have any input from public services at all.

Apologies for swamping you but I get so sick of the negligence of services and lack of thought given when people are making decisions about mentally ill people, particularly as there are only a handful of us who seem to know what is intended for ‘our’ future.

Regards

Mandy Lawrence

Addendum...I forgot to write that if I lose DLA, I will not be able to afford to have an internet access and thus will be even more excluded from life!!!

Where am I, what have I been doing?...and...updates on reforming the care system

2009-08-24T15:38:00.005+01:00

Got an email from a friend asking me this. I have been slipping on the keeping up connections front. Apologies...but have had a very busy few days.

Also clock that things have moved on in regards to responses viz a vie 'THE BIG CARE DEBATE'. Right now, have no energy left to 'air my views in appropriate places'. I need time....time to do nothing but care for me.

However, have been sent list (I will come back to, when bit more buoyed up) of different places where people can air their views. Here goes:

If you want to find out more about this issue, gather up to date information or view and/or join discussions please see some of the links below.

Department of Health
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_102338 (info)
http://www.dh.gov.uk/en/Consultations/Liveconsultations/DH_102339 (live consultation link)

DirectGov/Care and Support
http://careandsupport.direct.gov.uk/greenpaper/ (feedback & comments)
Respond to the green paper by taking part in the consultation process.
Contact form: http://careandsupport.direct.gov.uk/contact/
Email: careandsupport@dh.gsi.gov.uk
Write: Care and Support Team, Room 149, Richmond House, 79 Whitehall , London SW1A 2NS

Facebook
http://www.facebook.com/pages/Care-and-Support/41838753841

Benefits and Work
http://www.benefitsandwork.co.uk/disability-living-allowance-(dla)/dla-aa-cuts/dla-threat-faq (info & No More Benefits Cuts campaign)
http://www.benefitsandwork.co.uk/news/latest-news/1097-stop-press-charities-left-reeling-by-your-response

Disability Law Service
http://www.dls.org.uk/Advice/WelfareBenefits.html (info)

Equality and Diversity Forum
http://www.edf.org.uk/blog/?p=3827

RNIB
http://www.rnib.org.uk/xpedio/groups/public/documents/publicwebsite/public_dlafeb2009.hcsp (info & campaign)
• Download a draft campaign letter to send to your MP (Word) http://www.rnib.org.uk/xpedio/groups/public/documents/publicwebsite/public_dlamp2009.doc
• Download a draft campaign letter for sighted campaign supporters and sent to your MP
• Download a draft letter to sent to your local newspaper
• Find out if your MP has sign the EDM
• Find out who your MP is – visit the Parliament website
• Send your MP a fax – via FaxYourMP.com

Rethink
http://www.rethink.org/how_we_can_help/news_and_media/press_releases/adult_green_paper_on.html (info & feedback)

Action For Blind People
http://www.actionforblindpeople.org.uk/news/dla-campaign-we-need-your-help,83,SNS.html (info & campaign)

Equality 2025
http://www.officefordisability.gov.uk/equality2025/default.asp (info)

Survivor History Group
A debate on disability living allowance is currently active on the Survivor History Group site http://studymore.org.uk/. (discussion) Anyone who wants to take part in the debate (or just listen to it) can.
To join the forum go to: http://groups.google.com/group/survivor-history/

Department for work and pensions
http://www.direct.gov.uk/en/DisabledPeople/FinancialSupport/DisabilityLivingAllowance/index.htm (info)
http://www.dwp.gov.uk/about-dwp/public-bodies/dwp-sponsored-public-bodies/disability-living-allowance-advisory/
Email contact: ministers@dwp.gsi.gov.uk / enquiries@dwp.gsi.gov.uk (feedback)

BBC message boards
http://www.bbc.co.uk/ouch/messageboards/F2322273?thread=6842651 (discussion)

Seems like MIND are back on the case again:

MIND
http://www.mind.org.uk/campaigns (info)

MIND DLA RESPONSE
We share your view that the DLA is an important benefit for people with mental health problems. Mind responded to the social care pre-green paper consultation in November 2008, and recommended very strongly to Government that the Disability Living Allowance and Attendance Allowance must be retained.
Our recommendation was based on consultation with our networks. Over three-quarters (78 per cent) of respondents disagreed with the proposal to scrap DLA, and only 13 per cent agreed. 66 per cent of respondents had received DLA or AA in the last two years, and felt that DLA provided financial support for the extra costs of living with a disability, which are distinct from care costs. In focus groups and individual correspondence with service users, the proposal to pool DLA was unanimously rejected, often vehemently.
In the social care green paper, Shaping the Future of Care Together, the Government has not proposed to scrap DLA, although it is asking people for their views on whether they should pool Attendance Allowance with social care money.
Mind will respond to the green paper in the Autumn, along with other disability charities, and we will be consulting with our networks of people with experience of mental distress who will inform our response.
Mind will be lobbying the Government to make sure a new National Care Service takes account of the needs of people with experience of mental distress. But you can also have your say directly, by getting involved in the Government's national 'Big Care Debate'. There will be a number of events taking place around the country, or you can take part online, on Facebook, or on Twitter.
If you would like to get involved in Mind's response to the consultation and be kept up to date with the work Mind is doing around this issue please sign up to our campaigning network, Mind in Action, by sending your postal address to action@mind.org.uk. You will also receive e-bulletins with calls to action and ways to support Mind's work. You can also become a member of Mind Link, our network of people with direct experience of mental distress, by emailing mindlink@mind.org.uk. More information about the campaign will be posted on our website shortly: www.mind.org.uk

A response from Mind on the Reform of the care and support system (Dec 2008) can be obtained from a.whitelock@mind.org.uk

A couple of good days

2009-08-23T08:33:00.002+01:00

Friday: Dad rang me from the hospital. He couldn't get the money into the payphone in time but knew it was him. Rang him back and he asked if we could go out for a ride somewhere. Rob (Em's fella) happy to oblige but was a bit late in the day to go up to the local Downs plus Rob was knackered from working 17 days without a day off. In the end we went to a local carvery.

Dad was a bit wobbly but enjoyed himself and the veggie option was rather nice.

This was quite a big step forward for Dad. I don't want to raise expectations and next then he is back in the black hole but a pozzie is a pozzie and it was great that he wanted to go out and I really can't remember the last time we went out for a family meal.

Saturday: Friend's birthday. It was iffy right up to yesterday if she would be able to get out because she has been suffering aggrevated back problems (think that was to do with the 'voluntary' weed digging we did in her Church's car park. Don't get me started on that ...because I have strong feelings about her feeling obliged to do these things in such poor physical health but I wasn't going to let her struggle on alone (no sign of any support from other members of the congregation...that's Christian spirit for ya!). Can't say it did me much physical good either. Wednesday I felt rancid (some of which was due to a negative visit to the acute unit..and challenges I won't go into depth about. Will just say more staff attitude, a faulty hot drinks machine and Dad being in weird place with himself)

Anyway, Debs rallied though because she really wanted to get out and see the animals at a local farm. Well, is more like a children's zoo than a farm. Was a lovely day. Weather stayed good and we saw the most dinky baby goats. I spent ages feeding this little white one leaves of the trees. Don't think that was really allowed. They would rather I fed them the £1 containers of carrots (past their prime) and other bits of stuff they were selling. I know from Debs that goats love leaves (most leaves) and will happily chomp away on them, if allowed.

I was saddened to see the Racoons in a tiny corner of the farm (small cage) all looking thoroughly pissed off. One was pacing up and down. All I had was the £1 container of bits. Debs said they liked carrots..so we broke them into smaller pieces and the racoons livened up, scurrying about and climbing to get the bigger chunks from top of the cage.

Hmmm...such is the downside of keeping animals in captivity and also business over-riding the needs of the animals. Anyway, we did our bit and will go back later (with some fresh fruit and spend more time trying to keep racoons entertained).

Later we went on a mission to get leaves for the goats Debs already has. I felt quite the common crim, standing by the side of the road cutting branches. Sure there will be strong feelings about this, out there, but my loyalty is to Deb and her goats.

After that I bought an Indian take away and we pigged out.

Today, I have put out the bird feeders(purchased at the farm), with a suet block and nutty bits, so hopefully will start to see more of the feathery types in the garden. Suki isn't interested in chasing birds. She prefers to loll about on the floor getting fusses.

Later am going to mow the front lawn, make a card for Dad's brother (his birthday some time soon) and go visit Dad later on in the day.

Am thinking that surely the management at the acute unit could flex visiting times a bit. Dad wants to go to the local Downs. Debs has a car and we could take him out during the day. 4pm onwards is not best time to be sitting on top of a hill and more so with the nights drawing in and Autumn around the corner. Will ring and see if any negotiation is possible. Previous communications to Director of Acute Services ended with visitors being allowed in the garden there (even if I had to keep reminding staff of that 'new' agreement). Will give it a whirl.

Off for a cuppa and half a loz..and then to the garden.

Am back down to 2 and a half lozzees a day. Yesterday, 2 and a quarter:>). If things don't take another nose dive, I could get down to 2 a day..and from there, well.....sticking with my philosophy of one day at a time but going with the pozzie vibe.

The trouble with Shrinks

2009-08-21T09:50:00.003+01:00

well...could write a book...but one of the biggest problems is getting appointments with one you can trust (because you have built up some kind of positive communications with them) and then they move on. I am not sure why they have to move on but some bright spark will say it is something to do with training or building experience or some other bullshit!!!

Yes, am writing this because I have been sent a letter for my next appointment and it is with another shrink. Am wary of these people and their profession...15 minutes of talking about how you feel (whilst they nod or go "hmmmm") and a possible change of prescription at the end of it (for another medication that makes you feel even more crap than you already do).

I also dread them because, particularly with a shrink that doesn't know me, the most imporant thing for them will be my taking lorazepam and most probably they will tell me I should be coming off the stuff. Yeah, in an ideal world mate...and in an ideal world you wouldn't be able to give me other toxic crap because the pharma's wouldn't be allowed to produce it.

And before anyone comes on and tells me that drugs work...they can go have a look at my Dad, being pumped full of Dipixol (plus intermittent other stuff). Maybe, some drugs work for some people and recently I saw someone I was in acute care with. They had put on about 3 stone and had this glazed look on their face and were insisting they felt much better. That was their choice (but more likely their shrink made it for them). Well the part of me that can make objective decisions about' accepted maintenance' medication says it is stuck in the middle ages and I don't want it.

For sure am neurotic about this. Don't have a problem admitting that. Do have a problem trying to condensce the lack of trust around psychiatry, family dysfunction and all the emotional baggage that goes with it and not believing the hype in a 15 minute meeting.

I might postpone it....on grounds that negative reinforcement when visiting Dad doesn't incline me to believe that the shrink can do anything for me at all. That... as good as it is getting right is how it is going to be for forseeable future and I don't need any more jerking around. Problem then is GPs saying that I need okay from shrink to keep taking lozees.

Sometimes, all I want is to be left the heck alone to muddle along as I do. No pep talks, no toxic alternatives, no happy clappy pappy crappy.

Guess am asking too much!

Personal life too hellish to write about...so blogging about things I can blog about

2009-08-18T19:13:00.005+01:00

Due to propensity to cry at almost anything, didn't manage to watch the video that went with the campaign details but life (short as it is ) is rather tortured for my furry friends in China. That is unless they happen to be a Panda. What a contradiction we humans are!!!
Anyway, have put my money where my mouth is...enough, I hope, to do some good.

Pledge to go fur-free at PETA.org.

Have a link to Carer Watch (an organisation that is allowing the sick and disabled to add comments....often to do with proposals on the green paper). I have renamed it "Spot where the money is going to go Paper" :

carerwatchdotcom.myfineforum.org/about748.html

And now I am going to take my sedation and go sleep.

Latest from benefits and work website

2009-08-18T10:19:00.000+01:00

Stop press: charities left reeling by your response
14 August 2009

17,000 sick and disabled campaigners have managed in just a few days to send shock waves throughout the voluntary sector. Charities have been left reeling by the flood of emails they have been deluged with and the Disability Benefits Consortium have now issued a statement in the hope of stemming it.

Many hundreds of you have sent us copies of replies you have received from a huge range of charities. We have also heard from charities who say they cannot cope with the number of emails they are receiving.

Whilst some had already begun working on a reply to the green paper, it’s clear that many other organisations were hardly aware of it or its potential implications and are now hurriedly formulating responses. Some have begun canvassing their members. Others are seeking clarification from government over the exact meaning of the phrase ‘disability benefits, for example attendance allowance’

CPAG claim that they have had an assurance from the DWP that DLA will not be involved in any reforms. However, few disabled campaigners are likely to be satisfied with a private assurance from unnamed officials rather than a government minister. And that still leaves the issue of AA unresolved.

Meanwhile we received this communication from the Disability Benefits Consortium today which they asked us to communicate to campaigners:

“The Disability Benefits Consortium (DBC) comprises more than 25 national organisations that represent the needs of people who rely on disability benefits. As a consortium, we strongly oppose any proposals for using existing benefits to fund social care, and we will be making our opposition clear in our forthcoming response to the Green Paper on social care in England."

It is a very important step forward – there will now be organised opposition from a consortium of agencies that the government would have very much hoped to keep onside – or at least reasonably quiet, at this very early stage in the legislative process.

It’s certainly a very different response from the one we were getting from some charities at the beginning of the week, which dismissed any possibility of DLA being at risk and seemed to lack any sense of urgency in relation to the threat to disability benefits generally. Your success in getting the disability benefits consortium onside may make them think again.

There may be little purpose in continuing to bombard members of the consortium with emails which are now unlikely to be read and are generally being replied to with a standard response email. There is no doubt that the message has got home that enough is enough and there should be no more attacks on sick and disabled people’s income.

In another sign that campaigners are causing a stir we have discovered that home office officials are apparently attempting to discredit the campaign. Emails appear to be being forwarded from the Performance and Finance Directorate of the Home Office which, bizarrely, claim that the campaign is part of an identity theft scam. We are currently making further enquiries of the named home office staff. We have also been made aware of claims being circulated that we have inserted a virus in copies of the green paper!

Your efforts have achieved a startling amount in just a few days - more than we had expected would be achieved in many weeks. Dealing with the green paper has now leapt to the top of the agenda and it would be a foolhardy disability charity which dismissed the issue as a minor one, or at too early a stage to be concerned about.

Charities have until 13 November to make their representations to government. They now know that they will be watched and judged on the content of those representations– all of which should be obtainable under the Freedom of information Act - by many thousands of their own members. What we hope to see now is that those charities which are not already doing so will involve their members in creating the content of those responses. Where they approach you for input and support, we have no doubt that you will be happy to help them. Hopefully, that way we can avoid a repeat of the failure to prevent the disastrous impact of employment and support allowance.

We’ll be sending out another email on Tuesday suggesting further action. Meanwhile, well done!

Closing the gate after the horse has bolted

2009-08-13T21:26:00.006+01:00

For what it is worth..as in any relevance of putting it up here..I am putting up the response I got from 'Disability Alliance'.

Before I post the letter, I have to say that I didn't realise it was so late in the day. I thought the Green Paper (including cuts to DLA) was in the consultation process. However, it seems it is going to the House of Lords in October (for rubber stamping). Some tweeking could take place before that..maybe I am looking from a worse case scenario perspective but I can't see any major turnarounds now.

Shame that those of us, and organisations who supposedly represent us, who would have liked to have had a say haven't been provided with that opportunity in any real-time, to do so. Such is life..and I reckon things are only going to get worse. Bleak House here we come!!!

Additional note: I had completed the survey (identified in letter below). If nothing else, you can see where certain hierarchical thinking is. From what I read...it would appear... we are heading towards a de-nationalised health service. That may sound appealing but beware it could well be replaced with a newly nationalised (with a fancy title) and downsized something else.

Dear Ms Lawrence

Disability Alliance supports disability living allowance (DLA) and attendance allowance (AA) - as national, non-means tested benefits paid to disabled people to meet their higher living costs. We - and others - are well aware of the evidence on the higher costs of living disabled people experience. DLA and AA were intended to help with those costs and help tackle the link between disability and poverty. We believe placing either or both of these funds in the pool for Local Authority distribution could cut support and restrict choice and control for many disabled people.

Our position is online - http://www.disabilityalliance.org/care6a.htm - and we are running a survey to encourage people to respond to the green paper titled 'Shaping the Future of Care Together' and help strengthen our response by telling us your views. Please fill it in if you have time at: http://www.disabilityalliance.org/care6.htm The questions are those posed in the green paper - we need people's answers to these, but we have also added a couple of our own. We look forward to reading your response.

It would help in our campaign work if you also write to your MP describing your experience. If you don't know who your MP is you can find out (by using your postcode) at http://findyourmp.parliament.uk/ Attached is a sample letter that you might like to consider sending to your MP.

It would also help if you wrote to the Department for Work and Pensions on this issue - but please highlight that you are contacting them about national policy and not your individual case, or they may refer you to another agency. You can find the e-mail address for DWP Ministers on the following webpage at http://dwp.gov.uk/contact-us/

Disability Alliance works and campaigns at the national level to influence Government plans in this area. We are members of the Disability Benefit Consortium, and our website hosts the DBC at http://www.disabilityalliance.org/dbc.htm We meet regularly with the Department for Work and Pensions and HM Revenue and Customs on a range of benefits related issues.

Thank you for your e-mail.

Yours sincerely
Michele Holland

Disability Alliance
Universal House, 88-94 Wentworth Street
London E1 7SA
Tel: 020 7247 8776
Registered charity number 1063115
Company limited by guarantee number 2056801
www.disabilityalliance.org
Breaking the link between poverty and disability

Cutty Outty Bits ...now that's what I call therapy

2009-08-13T09:13:00.001+01:00

Changes to DLA and other Allowances - Stakeholder Group Members

2009-08-12T18:09:00.003+01:00

Here is a list of the Stakeholder Members and their email addresses(note there is no representative from mental health charities bar Alzheimer's society):

Age Concern - Helena Herklots – grants.unit@ace.org.uk
Allied Health Professions Federation – infor@ahpf.org.uk
Alzheimer’s Society - enquiries@alzheimers.org.uk
Association of British Insurers - Nick Kirwan – contact form
Association of Directors of Adult Social Services - John Dixon - john.dixon@westsussex.gov.uk
Asthma UK - Neil Churchill - info@asthma.org.uk
Better Government for Older People - susan.price@londoncouncils.gov.uk (this is the best I could do, BGOP don’t seem to have a website, just contacts for different areas)

British Association of Social Workers - Ian Johnston - nothing for I.J. - h.dawson@basw.co.uk (chief exec.) j.devo@basw.co.uk (magazine)
Carers UK - Imelda Redmond - info@carersuk.org
Commission for Social Care Inspection - Paul Snell enquiries@cqc.org.uk (Now Care Quality Commission)
Confederation of British Industry – Nigel.Bourne@cbi.org.uk (very difficult to find, this is director CBI London)
Counsel and Care - Anna Passingham – anna.passingham@counselandcare.org.uk
Crossroads Association - Anne Roberts – contact form
Disability Alliance - Kate Nash - office.da@dial.pipex.com
English Community Care Association - Martin Green - maria.patterson@ecca.org.uk
Equality 2025 - Rowen Jade – No website
Equality and Human Rights Commission - Gerry Zarb - info@equalityhumanrights.com - (England)
General Social Care Council - Mike Wardle - info@gscc.org.uk
GMB - Sharon Holder - info@gmb.org.uk
Help the Aged - Elizabeth McLennan - info@helptheaged.org.uk
In Control - Simon Duffy - admin@in-control.org.uk (S.D. has left)
Independent Age - Janet Morrison - jeffrey.manton@independentage.org.uk (London)
Institute of Public Policy Research - Sophie Moullin - k.osullivan@ippr.org (Press releases, no others)
Joseph Rowntree Foundation - Sue Collins - info@jrf.org.uk
The King's Fund - Richard Humphries - Tel: 020 7307 2400 (No email)
Local Government Association - Anne McDonald - anne.mcdonald@lga.gov.uk
London School of Economics - Prof Julien Forder - disability-dyslexia@lse.ac.uk (For disabled students) pressoffice@lse.ac.uk
Long Term Conditions Alliance - Mark Platt – (No website but it was on this site, it’s about health and social care) info@nationalvoices.org.uk
Look Ahead Housing and Care Ltd - Victoria Stark - info@lookahead.org.uk
Mencap - David Congdon - Sandra.pick@mencap.org.uk
National Care Association - info@nca.gb.com
National Care Forum - Des Kelly - des.kelly@nationalcareforum.org.uk
National Centre for Independent Living - Sue Bott - info@ncil.org.uk
National Housing Federation - Rebecca Pritchard - rebeccap@housing.org.uk
NAVCA - navca@navca.org.uk
New Local Government Network - info@nlgn.org.uk
NHS Confederation - Jo Webber - enquiries@nhsconfed.org
Partnership Group - Ian Owen - info@partnership.co.uk
Princess Royal Trust for Carers - Alex Fox - pknight@carers.org
PRP Architects - lon.prp@prparchitects.co.uk (This is the London Branch or use contact form main office)
Race Equality Foundation - ratna@racefound.org.uk
RADAR - Beth Capper - radar@radar.org.uk
Registered Nursing Home Association - Ian Turner - email: info@rnha.co.uk
Relatives & Residents Association - Dr Gillian Dalley - Gillian.Dalley@relres.org
Royal College of Nursing - Howard Catton – Contact form
Skills for Care - Andrea Rowe – Contact form
Social Care Institute for Excellence - Julie Jones - info@scie.org.uk
Social Enterprise Coalition - Jonathan Bland - info@socialenterprise.org.uk
Social Security Advisory Committee - ssac@dwp.gsi.gov.uk
Standing Commission on Carers - scoc@dh.gsi.gov.uk
UK Disabled People’s Council - Julie Newman – (No website, couldn’t find contact)
UK Home Care Association - Lesley Rimmer - helpline@ukhca.co.uk
Unison - direct@unison.co.uk
University of Essex Professor - Richard Berthoud - berthoud@essex.ac.uk
Voluntary Organisations Disability Group - Bryan Dutton - info@vodg.org.uk
Volunteering England - Sheila Hawkins - volunteering@volunteeringengland.org

I have emailed Kate Nash (who is one of the few representatives on the group who I think can represent (in part) those with mental illness. I do urge people to write to anyone they know with any say, power or connections asking them to defend the rights of disabled people to continue to have DLA payments,particularly as I believe that if the money is given directly to social services, people with mental illness will get little,if any, support from them in meeting their care needs.

My recent experience of them with my father is that they do the barest minimum and then discharge people as quickly as possible.

Cuts in Disability Living Allowances..another kick in the jacksie for disabled people and MH charities don't give a shit!!!

2009-08-11T08:42:00.009+01:00

From benefits and work website:

A government green paper has revealed plans to stop paying disability benefits and hand the cash over to social services instead.

The Shaping the Future of Care Green Paper published by the DWP and the Department of Health on 14th July sets out government plans to get rid of attendance allowance and, depending on public reaction, also leaves the way clear to end the care component of DLA.

The consultation period for the green paper ends on 13 November. If there has been no significant outcry against the plans by then, it seems very likely that whichever party is in power after the next election will seize this opportunity to cut public spending by over a billion pounds a year.

Unfortunately, so far, that outcry has been very muted indeed, with only a few agencies – including RNIB and Age Concern and Help the Aged - speaking out. Shamefully, at least one major disability organisation, Disability Alliance, immediately announced its support for the green paper’s proposals.

This is in spite of the fact that a report in November 2008 by the Institute for Social and Economic Research warned that taking DLA and AA from claimants and making it part of a ‘personal budget’ administered by social services will leave millions of disabled people worse off and with less independence.

The lack of protest is caused at least in part by ministers deliberately choosing ambiguous terms for their plans. The green paper refers only to cutting ‘disability benefits, for example Attendance Allowance’. Some organisations with predominantly younger members clearly believe that because DLA isn’t specifically named, that therefore it isn’t in the firing line.

But they are forgetting all the deception and weasel words that have surrounded the introduction of employment and support allowance. For example, ministers said that ESA would be paid at a higher rate than incapacity benefit. In fact, it turned out that cuts in related premiums mean that many people are very much worse off on ESA than they would have been on incapacity benefits.

The reality is that if the government was intending to axe only AA it would have said so clearly, instead of deliberately and repeatedly using the term ‘disability benefits’ to cause uncertainty and confusion. Writing on Rightsnet, Neil Bateman, a respected welfare benefits consultant who also writes for Community Care magazine argued:

“Based on what I heard last week at the DWP Policy and Strategy Forum, both DLA and AA are in the DH's [Department of Health’s] sights and DWP are closely, involved in these developments.”

Even Paul Treloar, until recently Disability Alliance’s Director of Policy and now Head of Information at Gingerbread, wrote that:

“From what I understand at the moment, it is certainly attendance allowance that is being considered for the chop and reallocation to means-tested social care provision via local authorities - but given that the ultimate aim is to come up with a comprehensive and sustainable system of social care for all ages, it's difficult to see how DLA care component won't be similarly up for inclusion, in my opinion.”

Here at Benefits and Work, we’re convinced that the threat to DLA as well as AA is very real and the that time to act is short.

As a result, we’re launching our own campaign to save these vital benefits. We’re looking for one thousand people to sign up for our No More Benefits Cuts campaign. All you need to do is provide us with your email address and first name and be prepared to give up a few minutes of your time once a week to send an email or post on a forum.

Although we know it’s a very tough target, we won’t begin until we can get 1,000 people to sign up for the campaign, simply because we don’t believe that a smaller number will have any effect at all. In truth, many more will eventually be needed.

You don’t need to be a claimant – you might be a carer or support worker, for example – and you don’t need to be a subscribing member of Benefits and Work. You also don’t have to send any emails if you choose not to and you can remove yourself from the list at any time you wish. And, of course, we will never pass your details on to anyone else under any circumstances.

On the other hand, if you think that here at Benefits and Work we’re just being doom and gloom mongers and that only attendance allowance is really under threat then please consider this:

If we let them get away with this, if we all look the other way as one and a half million sick and disabled pensioners have their attendance allowance stolen from them and are plunged into deepest poverty, how long do you honestly think it will be before the government comes back to steal your benefits as well?

And who will you ask to speak out for you in the future, if you remain silent now, just because you don’t think this affects you?

If you wish to sign up to the campaign to try and prevent allowances being withdrawn go to:

http://www.benefitsandwork.co.uk/disability-living-allowance-(dla)/dla-aa-cut

The site has been accused of cajoling people in to paying a joining fee but I think that is a bit iffy for people who are on low incomes. I signed up for the campaign and received an email about it made no mention of a joining fee...only what people can and are doing to try and stop Disability Living Allowance being taken away from those who need it.

SHAME ON MIND AND RETHINK FOR NOT SPEAKING OUT ABOUT THIS OR CAMPAIGNING PROPERLY FOR THE MENTALLY ILL!

The good, bad, ugly and a bit daft

2009-08-07T14:03:00.010+01:00

Let's start with combining the bad and the ugly

Was yakky morning (weird combos of naff physical feelings and emotional torments) not improved by phone calls from 'officialdom'. Seems the advocacy service have been kept out to the picture in regards to what is happening with Dad. Updated his advocate and passed on details of relevant others she needs to talk with..whilst making it clear that I am not here to play a co-ordinating function nor to take responsibility for Dad's care. She asked if I would I rather she took over the linking role and I said "Yes, please". All I really need to know is what decisions are made and to have a say when it comes to decisions that I believe will have an impact on Dad's long term care and my well being.

Straight after, the person who is covering for the Director, in his absense, rang to ask me how things were. I told her I was feeling pants (migraine brewing) and that I had nothing much more to say because I hadn't seen Dad since Wednesday and had passed feedback from that to the Director. I think she was just touching base and that is fair enough but I am beyond tired of phone calls and particularly ones reminding me of things that I am struggling to handle.

Is going to be another case of taking phone out of socket and letting things be what they will.

Having self medicated to level of tolerating life, dragged sorry butt round to shops to pick up latest zoo photos. Derby trip ones are still being developed in some lab. Yep, it's baby elephant time. I treated myself to some marshmallows whilst out to go with hot choccies. That had to be done.

And so to the good. For me, it doesn't get much better than this:

Baby Needs Walkies

Baby Tired Now

She still hasn't got a name but news is that Mum (Kaylee) and baby are still doing well.

Here is the start, hopefully, of greater things. Whilst in Derbyshire sussed that bees absolutely love Lavender as they were to be found, every morning, swarming round the lavender in the garden. Trip to garden centre planned soon as rain eases up.

Ending on the daft. Here are my beloved tarten Converse. 3 years old and still hanging together although they have seen better days. Ha!

If I hadn't have laughed

2009-08-06T09:58:00.002+01:00

I would have bawled me eyes out.

Went to visit Dad in the 'improved' local acute unit. The manager, in a conversation earlier in the day, said I would find positive changes in the place. Hmmmm...

I tried....I really did.... to spot the positive changes but they weren't there. I saw lots of signs such as 'The West Wing'. I was neither thrilled or upset by those but the initial approach on arriving there of 15 feet wire fences and barriers started to give me the heebies. I had to remind myself that I wasn't entering a high secure unit.

Dr J and I were informed on arrival that we had to sign in. Fair enough but when I asked to borrow a pen, the receptionist looked at me like I was a piece of shit. I think that goes with the job!!

We were then ushered into a side room and asked to wait for Dad. It was a pretty humid day and it felt like being in a sauna.

Dad was ushered in. For the love of all things sacred, I nearly wept. He was even more debilitated than I imaged. I can't explain it properly and won't attempt to. I grabbed Dr J's hand and rallied best as. We did manage to get through his mail (which he had asked me to bring from home) but he seemed disorientated and distracted. He kept asking for a tonic to pick him up. If only it was that simple. he wouldn't be in that place.

I kept thinking I was going to faint. I was sweating profusely and whereas Dad's blood pressure (which the nurse took 3 times due to him saying he felt so weak) seemed dangeroulsy low to me, I felt mine go through the ceiling.

There were communication issues (understatement)...the staff nurse had a strong African accent and my father is very hard of hearing. I ended up playing intepreter. When the option of PRN came up...I had to explain to Dad what PRN meant and the nurse asked me if Dad had a hearing problem. Er yes and no he wasn't just being rude or evasive. At one point Dad got aggi and started pacing but then got dizzy so I held him and sat him back down.

Due to heat in room and Dad getting aggi, I suggested we go into the garden area to get some fresh air. I asked the nurse and was told that Dad could go but visitors were not allowed. For fekk sake. Since when did units become even more like prisons? My last stay in there is a memory I could do without but even back then visitors were allowed to sit with me in the garden. I guess is another one of those essential Health and Safety measures. Although not sure essential to whom.

I made a joke about Colditz being more accommodating and mimicked a duck walk...I had this image of staff in Natzi uniforms and I laughted (maybe a bit too hysterically) but it was either that or kick off.

All I knew was I had to get the hell out of there. So Dr J and me said our goodbyes. I gave Dad a hug and said I would ring him and be back at the weekend. Am hoping by then I am less spooked by the thought of going there again. Outside I was shaking. Both Dr J and me have too many bad experiences and that visit did nothing to change my mind about mental health services and how inappropriate the so called modernisation programme is for the mentally ill.

It seems to revolve around risk assessing anything therapeutic or human out of these places and demoting people with illness to 'dangerous animals' that must be contained. Now I fully appreciate that Dad is in no fit state to be allowed to roam around freely. If his illness isn't to be trusted (and right now it can't be) then the affects the medication are having on him are equally limiting his capacity to function. Yeah! Maybe the meds will work. MAYBE!!!! Even if they do...it is very early days and very early days on strong meds (his being Dipixol) are ones in which he needs alot of monitoring (for physical reactions) and support due to debilitation.

After a rather fraught couple of days, on my arrival back home....I have been reassured that Dad is not due home leave. I won't go into details but I was led to believe he was being sent out Weds (yesterday). That beggared belief really but after frantic phone calls to the Director... for sure, for now, he is not going anywhere and is better off there. That is saying something because, and I mean this, I would rather be dead than have to go back there again.

I am not sure now that I made the right decision....but what else could I do? Let him die? Perhaps that would have been a merciful release. I can't tell and I only hope that Dad gets through this and to a point where it isn't total torture for him to be alive and constant mind fuck for me.

Last night I spoke to Dr J about moving. Is a pipe dream at the moment but at some point I would like to move away from this place and the area. Way too many bad memories. I am not sure that Dr J would come with me and I am not sure that if he did it would benefit either of us but is a dream I am going to hang on to. Sometimes the dream of a better future is all that there is to hang on to.

When in Rome

2009-08-02T08:32:00.004+01:00

Anyone who reads the blog will know that I am mostly adverse to the media, whilst still thinking that a free press is an essential requirement to this society.

But as with title, being away from home tend to go with flow of where I am and when asked if I wanted a Saturday paper agreed to a copy of The Independent.

Three stories caught my interest:

The first was about Herman Rorschach. More so the ink blots he used in pyschiatric testing from 1920's. Seems the cat is out of the bag. Thanks to Wikipedia, who posted the images along with most common responses given by test participants (would assume that is researched somehow).. Years of serious psycho-analyis put at risk...so the psychologists say... by this reckless action bt Wiki. Ha! Ha! The accompanying impage to this article was of one of the ink blots. To me it looked like a demonic mask. Have yet to check my response with Wikipidea list but am in no hurry. I think the test is mostly bunkum.

Second artice was about the Sanctity of Life. The writer relating this to the big debate around Euthanasia. Using Trosky as an example of someone whose example shouldn't be followed, particulary as his claim that the sanctity of life was "Papist-Quaker babble" was shared by that great humanist Stalin (his one time friend and the person most likely to have had Trosky done in).Hitler was also used as an anti hero (like people didn't get that already)as he was pro euthanasia for the mentally and physically disabled (which is something maybe not as widely known as to those of us with vested interest) What hit home to me was the writer's view that in this society, which, he claims, values everything in terms of money that euthanasia could become a cop out for a government who hasn't got and would prefer not to have to find the resources to care for a growing and aging population.Food for thought indeed!!

Final story of interest was about The Quakers (a group I know little about but am becoming more interested in since reading the article). They are going to conduct gay weddings. i didn't realise that the government was in opposition to this. After all this government passed the law on 'civil arrangements' allowing for gay couples to have similar rights in regards to homes, financial enitlements and a certain level of acceptance (again legally) of the importance of relationships and commitment. Now I have issues in regard to marriage and religeon (personal bias I wouldn't enforce on anyone else even if I could) but am pro human rights so am chuffed The Quakers are prepared to swim against the tide of social control and offer a service that acknowledges the sanctity of love and people's rights to choose how they share that. More tolerance and less social dictate would be good for this country and the people in it. Perhaps the article has more poignance to me as the guys I am staying with are celebrating their first 'wedding' anniversary. They had a civil service (can't remember what the actual term is) this day, last year,and good on 'em. Think we are all going out for a celebratory meal later.Yum!

To my here and now. Listening to George Michael cd I bought yesterday. Purely because it has his version of 'Flawless' on it. The bonus is it has all the other dancey numbers on it too, which makes up for the disappearance of the the dance cd of 'Ladies and Gentlemen', along with my house keys, back home. Am going to head downstairs to make myself a cuppa, check out the baby chicks and start to share the rest of the day with my hosts.

Live from a laptop in Derbyshire

2009-08-01T08:47:00.003+01:00

and it feels good :>)

Apart from an hour stuck in a motorway jam outside Northampton,journey here was smooth running. £3.09 for a hot choccy at a motorway caf was a rip off but least I got some marshmallows with it.

We had a Chinese meal last night and then chilled out chatting and catching up. The guys have new baby chicks too. So cute.

Later today, we are going to visit a local market. Am a big fan of markets. The real ones with bargains. For now, am slobbing about in bedroom, listening to radio and bidding on a blue top on ebay to go with electric blue dolly shoes. I have a dolly shoe obsession. Obsession as in one pair of dolly shoes is really enough for anyone but I want pairs in diffferent colours and or with different patterns on them. Totally frivolous, superficial stuff. I need more of that kind of thing.

Other plans for weekend. Would like to watch The Proms tribute to Hollywood movies tonight and hoping for drive to Peak District. Apart from that don't mind. The break is enough in itself. I needed space between me and what has been going on. Space just for me.

Off to have a shower and then it's boiled eggs for brekky (from the chickens the guys keep). Am feeling quite blissy.

Update before I sedate myself into oblivion for the night

2009-07-28T21:57:00.003+01:00

Woke up.....felt yakky yak yak.

Due to STR Worker not feeling well herself, swimming was cancelled. Wasn't too hung up about that but there needs to be a mutual understanding that just like STR Worker can't predict when she will get sick...I can't predict what days are going to be my more stable days. Ah well. Knickers to that right now.

Mostly slumped until 4.30 pm ish. I wanted to go back to sleep but couldn't and didn't have energy(or motivation) to do much else...but come 4.30, something kicked in. Got ants in my pants and needed to walk.

So I walked to town...then on to GP's to pick up prescription for wafer thingies.... then on to friend's (who lives round the corner from the practice) for a cuppa.

Was little bit pooped so taxi'd from there to hospital. I know I hadn't planned to see Dad today but I went with the flow.

He was in much weirder place. Although he doesn't do the pacing thing that I do when I am highly anxious, his face was gurning something awful, his legs were going and he kept putting his head in his hands.

The reason is, I think, that the doctor who saw him today told him he was being discharged tomorrow. Now, I don't know how much of what Dad says is the truth. It might be the truth as he perceives it...but I like to get the opinion of a staff member (and one that actually knows what is going on). That proved rather difficult.

At one point, there was not a nurse to be found. Having walked length of ward, a kindly visitor asked me if I was lost. I explained I was trying to find a member of the nursing staff and she pointed me to a side room. I waited there for 10 minutes. Nurse explained that she didn't know anything about my father's situation...she went and looked at a sheet of paper and said..."I don't know what is happening but it says he is scheduled for a psychiatric assessement". She advised me to ring up in the morning and speak to the Discharge Co-ordinator. Can't wait!!! You know how much I love talking to different people, all of whom have a different view of what is going on.

Dad got more ajji, so I asked if he was taking any medication. He said that he was told he couldn't have any but felt he needed a lorazepam....so off I trot again and found another nurse who said "You have already spoken to another nurse".

Right so rellies are rationed to one question per visit.

I explained this was a different matter. After I was assured he could have medication, I informed her of Dad's state and asked her if she could organise for him to have his sedation. I also explained that I bought his medication in with him and so it wasn't anything he hadn't been prescribed. She said she would do that....but she still hadn't done it by the time I left. Now I understand the NHS is under pressure (I would say crumbling on it's foundation...status) but I also understand that high levels of anxiety do not go away just because staff are stretched.

Really hospitals are not places to be when you are ill, these days. Then again, isn't like there are that many options!!!

Final summarising of the visit:

There was, I spotted, a Hospital Policy poster on the wall. Quoting such gems as

"All staff will be approachable, friendly and responsive to patients, relatives, carers and other visitors"

and

"Open communication between all staff, patients, relatives etc etc, shall take place.

If I had a marker pen to hand, I would have added

"The left hand needs to keep the right hand clued up on what it is doing...and the deck should have hands on it at all times"

A trip to the zoo and much needed uppy time

2009-07-27T18:53:00.004+01:00

Apologies to anyone who thinks I should be constantly fighting my Dad's corner and writing blogs with solemn references but am trying to keep my sanity and balance best as and by taking each day as it comes.

Today was a goodie but before I explain why, want to share a couple of photos, from the last visit. The one in which Azzizah and Euan were playing together.

As I wrote before, was uplifting to see them so happy together:

Was lovely to spend today with Em and her fella and share the wonderful experiences. First of all we went to Lemar Island. Is one of the few areas where the public can get next to animals. Thankfully, there are staff constantly on watch. I say that because although most people go to appreciate the animals and conservation work, there are those who would do damage (intentionally or otherwise). I got to sit next to a Lemar. For me that was awesome. It was totally non-plussed by the affair. Literally, the Lemars were mingling with us humans and comfortably so (maybe hoping for snacks....but such things are rightly out of bounds).

Next stop was my favourite place (no prizes for guessing where)...and total thrill to see a new elephant cub. Yet unamed at 4 days old. He is being closely monitored by his mum and aunt and slept mostly while we watched on, in awe. He did manage a few steps, after his mum had gone for a bit of a walk and aunt was, I think, concerned he needed to be with her. Once reassured by some trunk touching he flopped back down for more sleep (typical baby eh? Not the trunk touching but the sleep :>)

After that, and being totally bouyed up, we went to find the rhinos, then the sloth bears and feeling peckish got the zoo bus to the cafe at the other end of the zoo so we could see the penquins who are camped next door. Before we knew it, we were running late. We had intended to get to Dad by 2.30 but time just flew by.

We weren't too late and arrived at the hospital just after 3.

Not sure what to write about Dad. He seems distant alot of the time. Like he usually is. He did join in as much as his state could allow and we said we would all go to the zoo when he was better. He would like to go, if health permits. I said it was an obligatory family outing (half jokey) as in at least once a year we should all do the zoo. There is a thin line between encouraging and bullying. Trying to keep the right side of that whilst giving him things to hang on to.

I spoke to the doctor about his condition. She explained that his liver seems to be recovering. The norm is 30. 30 what? I am not sure about. Dad's level is now 600, although it was over 1,000 last week. That's paracetamol for you. Fekkin' horrible tablets to OD on but that was most probably last thing on Dad's mind when he took them. Well, the having to deal with after effects!!!!

Not sure on how long Dad's stay in hospital is going to be. Would assume it depends how quickly that level comes down, and if it does continue to come down. The doctor was optimistic..that it would come down more but said it could take anything from a week to a month. Can't remember for sure but think the next lot of blood tests are due Wednesday. If I think too much about this is very scary. So am trying to be ..not sure what the word is..but I am trying to keep my focus on the facts rather than the possibilities.

Before we left hospital, we stocked Dad up on drinks. He has quite a thirst but can't bare drinking water. Will try and get to hospital again tomorrow but that depends on how knackered I am after the first 'recovery' swim. I am not sure if I am supposed to be meeting my STR worker at the pool or if she is coming to me. So much for the CP5 thingy...well the planning aspect of it. Best ring her in the morning...can't leave these things to fate or other people. Not when it is me that is going to be putting in the most effort.

Now, I am going to chill out for the evening. Run a bath. Have a long soak and hopefully zonk out because have naturally used up my energy.