Philosophy of The Big Society

David Cameron gets to be God!

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 :>)