Philosophy of The Big Society

David Cameron gets to be God!

Saturday, 24 January 2009

Carers and Service Users and if/when the twain should meet????

Have read posting on Mental Health Service User's Blog...and there was reference to issues around funding. As in when groups are in competition to get funding.

Have responded to that posting...waiting for approval (story of my life..Ha! ha!)..anyway, I forgot to add that the merging of the local carers' group with the MH service user rep group seems a bit odd to me because the carers' group is for people who care for others with physical disabilities as well as mental health problems and the MH service user group represents (supposedly, and I have still yet to actually see it happen) people with mental health problems. Not sure quite how that is all going to fit together.

I reckon it is a merging because of the need for funding for either one of those bodies or both. The carers' group is under the umbrella of Rethink (a charity which is much better at supporting carers locally than people with mental illness) and the SU group is under the Mind (A charity that takes more locally from people than it actually gives) umbrella.

I wrote this more as an addendum to the other posting but also out of concern that in order to get funding charities often dumb down or lose the really good services they provide to people for the good of the greater HOLE!

My view on whether it is right for carer and SU groups to work together is yes, as long as the needs of one group do not overshadow the needs of the other. As someone who sort of fits (but not really) in both camps, I can see that I could very easily be compromised or feel that way..depending on how I am viewed by either group and what their agendas are.


  1. Cursed with the ' helpful ' gene here so although not a carer proper I can see why the needs and interests of service -users and carers run counter to each other sometimes and how service -users and carers probably need a space of their own to bitch about each other at times.

    There are some people, like the owner of this blog , with a foot in both camps who probably also need to flit between other carers and users for bit of empathy and support too because they aren't going to get much from the system thats for sure.

    That brings me to something else I want to post about to help sum up all thats wrong with MH services today, to share a short drive into central London I took with another ex service user yesterday that became a depressing physical journey through a suicide map. If it goes on a bit its because it was so shockingly depressing that it had a lasting effect as it reminded me how bad things really are within MH.

    My friend stopped using services as they offered him no practical help. he careers from badly paid job to job , finding it incredibly difficult to hold one down as he gets over-anxious and paranoid .He can no longer deal with bureacracy so benefits are out as there's no real help available to claim them and he has ran up massive debts of £10,000 or so that he is finding it very difficult to face at the moment as the bank just takes most of he wages in interest payments on the outstanding debt.

    My friend works a 60 hour a week night shift in an unregulated rip off trade and takes home about £240 a week , so he's earning about £4 an hour. Some weeks he earns nothing and phones me in the early hours to say he has been waiting 5 or 6 hours for his first job. He gets paid by the job. The local MH Trust have claimed his as a success story, they do this with anyone they can repel is.

    This is reality for the unskilled at the bottom of the heap in mainstream society and it'll get worse as we sink deeper into recession and more service users are targetted off benefits in cost cutting drives.

    The same Trust withdrew services from me last year because I took legal action against them for discrimination, not for money but on principle. So another statistical success story for them.

    So thats the setting, two long term service users who cant access services anymore going for a short drive.

    Anyway my friend picked me up in Lewisham to go into Central London and as we drove through Deptford he pointed out his old friend Charles' flat. I met Charles once in a pub in Catford , he was in a therapy group at the Maudsley Hospital with my friend at the time. He told me he was struggling on his own and finding it incredibly difficult to find purpose in life and getting very little support. A few weeks after this meeting Charles took his life .

    Talking about this in the car , I mentioned to my friend that a woman in our group at the Catford pub the same night I had met Charles had also killed herself about a month later. She was also a MH service user and barely out of her teens. We discussed her circumstances until we got to Rotherhithe where we started to talk about Pete Shaugnessy of Mad Pride fame who committed suicide in 2002 .

    I had set up an MH charity with Pete and we not only drove almost right by his old flat we also drove by the building where the self help group we set up used to meet. About half the original members from the mid 1990's are dead.

    Futher up the road my friend pointed out another pub where our friend Simon , another service user, used to hang out. He was a fit 30 something in the late 90's , a marathon runner and keen jogger but a number of lengthy hospitalisations around the turn of the century led to him being horribly over medicated , being placed in a hostel and his weight shooting up to 19 stones. He shared the same shrink as me. I asked her one day how he was as he lived in another borough.Oh she said, he died of a heart attack.

    He was in his early 40's.

    Services had decided I was Simon's principal care figure a year or so before that and I had had a massive argument with both them and him about this as I wasnt even informed - confidentiality of course ...The ' official' plan was to relocate Simon , who was getting ill a lot, close to my new house and it was real laziness on the part of services and Simon's own wealthy middle class family who were all GP's but just didnt want to do any picking up themselves. That's how Simon , who was a bit of a toff and a qualified solicitor , ended up living in a bedsit on a run down council estate alongside dregs like me.

    I didnt object to helping out at all , Simon had virtually lived in my house prior to the lengthy hospitalisations, what I objected to was having responsibilities dumped on me without any rights by lazy MH professionals and Simon's family who were simply shunting him away from them.

    Sadly, I permanently fell out with Simon over this as he deferred to both his family and services and would never question the motives of either and that left me in an impossible situation, a lackey with no rights looking after a guy who was getting ill so frequently that he needed an advocate not a powerless helpless friend .The fact that the same services who had been happy to secretly write me up as the principal care figure didnt even bother to tell me Simon was dead was amazing.

    My friend was also a good friend of Simon's and we talked about him as we drove on. Driving through Bermondsy we passed the house of another MH service user we knew who had killed herself who had also received very little help even though she was struggling with mental illness and a young child. By this time me and my friend were openly talking about
    just how many people hadnt made it and how we were practically navigating through a suicide map. .

    As we crossed over Tower Bridge I pointed up river towards London Bridge where another neglected service user I knew had committed suicide.

    On his Mental Health Service User Voice blog Ron Peponis recently openly and honestly questioned whether he had been duped by Services over Service User Representation for the the last decade or so, I said he had been, maybe put it a little stronger than that as a lot of people have been duped pretty badly.

    And the duping goes on but very few of the new breed of mental health bloggers are prepared to look at the actual treatment and care people are getting - or rather not getting and the appalling contexts they are not getting it in.

    I think Ron is waking up to that fact as his own physical health fails and he maybe realises that not everyone is as dynamic as perhaps he has been around MH in the course of his life and a lot of people arent interested in the shallow politics they just want adequate treatment, care and support without having to fight for every fucking little thing all the time, something that maybe service users who work around services dont have to do.

    I'll never forget how a well connected professional user once adviced me to join the PPI to get a better service.

    Can you imagine Cancer sufferers being told the same thing?

    The author of this blog has documented her and her Dad's struggles and has told me in the odd private mail that most of the people she knows are service users who are also largely being failed by services and left to their own devices.

    This is my experience too. Its my friends experience as well. The point I was making to Ron , not because it was his fault but because he was asking the question , is that things have got worse, much much worse than they were , say, 15 years ago.

    Yet we still have recovered service who work for ' streamlined ' services lecturing about officially driven user empowerment as if its the MH equivalent of liberation theology.

    I know 'recovered ' service users who are paid handsomely to represent and empower but I know more service users who have killed themselves or died because of neglect than they have actually helped. Most of their deaths could have been prevented by half decent services .And I wonder how many other unnoticed and forgotten deaths their have been and just how many other service users have been and still are being abysmally failed as people waffle on about mentalism and the latest trends within well connected professional service user circles.

    well, do you feel empowered people?

    Come on you can do better than that?


    Well, do you?

  2. Mandy felt the need to just say its good you talk with maddentist. i am his friend too. you say exactly what i want to say. I am there for him too he is not on his own.

  3. Hi Norm

    Haven't been in best place to take in much this weekend.

    Have felt pretty disjointed in myself and so am likely to have written waffle.

    Your posting is the point where I can see that some of us are bleeding, or have bled, to death.

    It is disgusting that your Trust has removed any support they previously gave you but sadly not surprising. He who dares to challenge often finds themselves outcast from services, communities and anyone who has the ignorance to believe that those of us with long and enduring illnesses can be easily fixed and slotted back into society.

    I am sorry too that your friend is working his knackers off for fekk all. When I got the stuff back from the DWP about my income support claim there was a section where it asked what sort of work I wanted or was looking for and the response the DWP had put on it was that I hadn't answered those questions. Actually, I had said that I was unfit for work. There is a difference between being evasive and stating the obvious. Which I had.

    I know what sort of work I would like but I also know I wouldn't even be able to get there let alone do a day's shift.

    Your comment also made me think of those who I have known and lost. Either to suicide or another illness/disease (which I consider to be a result of the torture of mental illness and the combinations of toxic shit prescribed to them).

    It all makes for gloomy reading but then if people want to read the happy clappy bollocks that is written about mental illness they need to look to the likes of Mental Health Media. Or those rare but valid people who actually do seem to be on top of mental illness and doing alright (although I think they are the minority) and should not be used to make the rest of us feel like useless tosspots.

    Surviving till tomorrow is my objective here :>)

  4. Dear Anon

    Maddentist is my mate. Well anyone who makes an effort to get to know me and accepts me as I am usually becomes my friend.

    He is a special person and I think it is sad that so many people are so up their own arses they don't give him the time of day.

    Sure I will get some sarky comments back about that last statement but I don't give a fekk about impressing people.

    I say what I think, simple as.

  5. trusts and official groups are so not my my thing any more.

    for some friends who have had YEARS of in patient care, what officialdom offers is not worth papering my shed with....

    For me...i even came off the carers group. just friendship now. it seems to work

    ( i certainly don't get so cross any more...!)

  6. Hi MMP

    There is alot to be said for avoidance :>)

    I refuse to join things now. It all becomes much of a not much of anything-ness.

    I think the most valid thing I can say about user groups and networks is that in the last 20 years (more so the last 10 years) and within that they have supposedly grown in strength, there is certainly alot more of them and services have got worse. That says it all about how relevant they are.