Philosophy of The Big Society

David Cameron gets to be God!

Wednesday, 2 December 2009


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' 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

Tuesday, 1 December 2009

The rise and rise of the bourjois busybodies

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 stacking shelves in Sainsburies...the better!!!!!

Tuesday, 3 November 2009

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

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 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 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!!

Friday, 9 October 2009

There is no normal service to resume

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.

Monday, 5 October 2009

Cannot be doing with Autumn...because

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!

Thursday, 1 October 2009

Not merging but drowning

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 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 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 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.

Wednesday, 30 September 2009

Latest email from benefits and work

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:

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

Sunday, 27 September 2009

Response to letter from Minister of State for Care Services

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

Friday, 18 September 2009

The truth about cats and dogs and MH services

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 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 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 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!!!!

Tuesday, 15 September 2009

Missing Norm

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

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 know the rules and you don't overstep the mark. After that, you are sent back 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 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

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

Monday, 14 September 2009

Who really calls the shots when it comes to care?

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 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'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.

Sunday, 13 September 2009

Rising unemployment blamed for 'New Deal' pull outs

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

They should have one in every hotel room.

Practising my right to free speech

I can't stand radishes.

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

Friday, 4 September 2009

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

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.

Tuesday, 1 September 2009

Other things

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 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 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 :>)

Tuesday, 25 August 2009

Letter to MP..about personal and wider issues

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.


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!!!

Monday, 24 August 2009

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

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 (info) (live consultation link)

DirectGov/Care and Support (feedback & comments)
Respond to the green paper by taking part in the consultation process.
Contact form:
Write: Care and Support Team, Room 149, Richmond House, 79 Whitehall , London SW1A 2NS


Benefits and Work (info & No More Benefits Cuts campaign)

Disability Law Service (info)

Equality and Diversity Forum

RNIB (info & campaign)
• Download a draft campaign letter to send to your MP (Word)
• 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

Rethink (info & feedback)

Action For Blind People,83,SNS.html (info & campaign)

Equality 2025 (info)

Survivor History Group
A debate on disability living allowance is currently active on the Survivor History Group site (discussion) Anyone who wants to take part in the debate (or just listen to it) can.
To join the forum go to:

Department for work and pensions (info)
Email contact: / (feedback)

BBC message boards (discussion)

Seems like MIND are back on the case again:

MIND (info)

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 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 More information about the campaign will be posted on our website shortly:

A response from Mind on the Reform of the care and support system (Dec 2008) can be obtained from

Sunday, 23 August 2009

A couple of good days

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 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.

Friday, 21 August 2009

The trouble with Shrinks

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!

Tuesday, 18 August 2009

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

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

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" :

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

Latest from benefits and work website

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!

Thursday, 13 August 2009

Closing the gate after the horse has bolted

For what it is 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 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 - - 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: 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 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

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 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
Breaking the link between poverty and disability

Cutty Outty Bits that's what I call therapy

Wednesday, 12 August 2009

Changes to DLA and other Allowances - Stakeholder Group Members

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 –
Allied Health Professions Federation –
Alzheimer’s Society -
Association of British Insurers - Nick Kirwan – contact form
Association of Directors of Adult Social Services - John Dixon -
Asthma UK - Neil Churchill -
Better Government for Older People - (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. - (chief exec.) (magazine)
Carers UK - Imelda Redmond -
Commission for Social Care Inspection - Paul Snell (Now Care Quality Commission)
Confederation of British Industry – (very difficult to find, this is director CBI London)
Counsel and Care - Anna Passingham –
Crossroads Association - Anne Roberts – contact form
Disability Alliance - Kate Nash -
English Community Care Association - Martin Green -
Equality 2025 - Rowen Jade – No website
Equality and Human Rights Commission - Gerry Zarb - - (England)
General Social Care Council - Mike Wardle -
GMB - Sharon Holder -
Help the Aged - Elizabeth McLennan -
In Control - Simon Duffy - (S.D. has left)
Independent Age - Janet Morrison - (London)
Institute of Public Policy Research - Sophie Moullin - (Press releases, no others)
Joseph Rowntree Foundation - Sue Collins -
The King's Fund - Richard Humphries - Tel: 020 7307 2400 (No email)
Local Government Association - Anne McDonald -
London School of Economics - Prof Julien Forder - (For disabled students)
Long Term Conditions Alliance - Mark Platt – (No website but it was on this site, it’s about health and social care)
Look Ahead Housing and Care Ltd - Victoria Stark -
Mencap - David Congdon -
National Care Association -
National Care Forum - Des Kelly -
National Centre for Independent Living - Sue Bott -
National Housing Federation - Rebecca Pritchard -
New Local Government Network -
NHS Confederation - Jo Webber -
Partnership Group - Ian Owen -
Princess Royal Trust for Carers - Alex Fox -
PRP Architects - (This is the London Branch or use contact form main office)
Race Equality Foundation -
RADAR - Beth Capper -
Registered Nursing Home Association - Ian Turner - email:
Relatives & Residents Association - Dr Gillian Dalley -
Royal College of Nursing - Howard Catton – Contact form
Skills for Care - Andrea Rowe – Contact form
Social Care Institute for Excellence - Julie Jones -
Social Enterprise Coalition - Jonathan Bland -
Social Security Advisory Committee -
Standing Commission on Carers -
UK Disabled People’s Council - Julie Newman – (No website, couldn’t find contact)
UK Home Care Association - Lesley Rimmer -
Unison -
University of Essex Professor - Richard Berthoud -
Voluntary Organisations Disability Group - Bryan Dutton -
Volunteering England - Sheila Hawkins -

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.

Tuesday, 11 August 2009

Cuts in Disability Living Allowances..another kick in the jacksie for disabled people and MH charities don't give a shit!!!

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:

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.


Friday, 7 August 2009

The good, bad, ugly and a bit daft

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!

Thursday, 6 August 2009

If I hadn't have laughed

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 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.