Philosophy of The Big Society

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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


  1. That was an incredible letter Mandy. Whose desk is it going to land on? Have you thought about sending it to the newspapers ie government bashing Daily Mail? Just a thought anyway.

    Your situation is very similar to mine in regards to getting out an about. There are many things I would like to try, swimming, gym, college, places to go find a little self enrichment and a sense of purpose but can't even consider it without support. However, support is zero. If my Mum didn't take me to the supermarket my Dad and me would be seriously up shit creek. He gets DLA but no care componant. Get this, they took it off him when I moved in and then billed him for back payments despite informing him at the time of my unexpected arrival that it made no difference. His altrustic gesture has left him £50 a week worse off, in serious debt, and relying on a fellow agoraphobic to meet his needs. Ho ho ho. You just have to laugh.


  2. Hi CC

    I reckon it will land in the bin but I didn't want whichever civil servant sent the letter to think I accepted their 'vision' by not responding.

    Ironic that they took your Dad's care component off him when someone (you) were actually there now to care for him. It really beggars belief.

    On the one hand they demand people have more inclusive lives and then take back anything that allows for such a thing.

    Actually the only thing they want is to cut corners and snuffle back benefits to try and pacify themselves that they are sorting the national deficit out.

    Lovin' (ironically speaking) the fact that these heads of state are twittering on about having to sort the 'reckless banking systems' out...but not too much.

    Ah well. Reckon 6 months to the general election...plenty of employment opportunities for spin doctors. Ha!

  3. Hi Manders,

    Great letter and you're right, the Government's plans threaten to simply inavalidate and further impoverish mental health service users on DLA. You're also spot on about the disability discrimination aspect to the proposals as many MH service users have nothing to do with Social Services and by and large Social Services are geared up towards dealing , or at least providing care and support to, people with physical disabilities . Ditto with Direct Payments, my Trust went through the motions of trying to sort out a Direct Payment for an exercise activity and the Social Service assessment team had no insight into mental health issues and the forms were framed around physical disability.

    The Government is required by Law to accomdate disability but instead of doing this it's treating us differently , more often than not simply ignoring MH disability - like agoraphobia for example - and expecting us to accomodate them.

    Coffeecup's account of how her fathers benefits being cut simply reveal that there really is no joined up thinking in mental health care provision around home support and income stabilisation either.

    Services have just lazilly retreated behind locked doors and video entry phone systems to sit on their hands and in the ' community' - i.e. out of official sight and out of mind - its a question of 'everyone for themselves ' because there isn't any joined up care and support around Mental Health.

  4. Hi Norm

    With such ignorance abounding, I don't feel optimistic about Labour's Golden Dream of Care. Have heard rumours that the proposals could be timed out, due to pending general election but if the Tories get in can't see them being more insightful..although my MP (a Tory) has, at least, tried to help, in his own way. I often think he is playing catch up in regards to what is actually going on but appreciate that I am one of many thousands of his consituents...that makes me grateful that he has bothered to stick with my corresponence and respond.

    I think it is only the Lib Dems that have (publicly) said they think mental health services are badly resourced. Not a murmur from the 2 other key parties. Not surprised Labour haven't bothered. After all under their government the NHS has become a bloody mess and the Tory track record (apart from support from my MP) hasn't been all that supportive of the lower classes.

    What will be, will be but is all pretty spooky to me.