Wednesday 8 January 2014

Re: he11615 - social care bill

Dear Mr Offord

Thank you for the reply I received today.

I'd like to respond by first telling you about myself. I'm an independent mental health activist. I'm the member of a few national and international charities. I'm afraid to say I'm also a victim of local mental health services and it's in this aspect that I reply to you and on behalf of others.

Ordinarily I would scour the internet to find data on the performance of local services but I don't have access to computing or proper internet. this is a simple example of the digital exclusion faced by too many disabled people. Instead of data I'll have to rely on my personal experience and that of others I've met in worse circumstances .

Things in this area are very bad. A minimum standard would be welcomed. I have lived in temporary accommodation for 2 years and have seen many people come through where I live who are being failed by the system now.

One example I'll call K. He was moved to where I lived because of antisocial behaviour. He had high support needs. He didn't eat well and when he did it could be food left out for days. He didn't wash his clothes but would wear them till he got money them would replace his clothes. My experience was his high level of disability and bad behaviour. (He threatened to murder me.) Though his needs were high and his prognosis- a measure of his awful future- was a terrible prediction he was ignored by mental health and social care services. Too hard to treat. Too mentally ill for the minimum standard of care here perhaps?

Another resident with severe mental I'll health and personality disorder traits came to where I live from prison. He has exceptionally high levels of disability and, again, antisocial behaviour. He needed support as soon as he got out of prison. Instead he got no support and not even his medication for a period. Days and days would go by when I would wake to hear him dry wretching or having sex with prostitutes. (His Sexual exclusion, another facet of disability, was being dealt with but it cost so much he had nothing left for food). He is dying without support and he doesn't want to die.

They, like myself, are disabled and are failed by local services. We're also addicts and get a spit roast of stigma and discrimination not just from the public but also from health and social care staff. It's so bad that one of NICEs quality standards requires specific training to combat the stigma. If memory serves me the royal college of psychiatry fair deal policy and strategy documents stated one third of addicts get no health or social care intervention at all.

It's not just addicts though. I could write many more tales of woe from my personal experience and others who have lived at 4 bovingdon lane. I think the best person to communicate the horror of local care would be the barnet centre for independent living. I've copied Caroline into this email.

A minimum standard is a welcome move. In my opinion an aspirational standard would be better because that's the sort of thinking which is so desperately needed to make things better for people like me and those I've mentioned but I guess pragmatism rather than genuine social advancement is the mentality driving this new bill.

There is an important pragmatic solution to guaranteeing good outcomes. It may already be in place but I don't know because of the digital exclusion I face. A cheap phone is a poor substitute.

My suggestion relates to performance management. My assumption is that no matter how poorly the vision is implemented there is a genuine desire to improve- not just do cheaper- the lives and outcomes of disabled people. There is no better tool to guarantee this in practice than the balanced scorecard approach and other methods of performance management proven effective in children's social care.

Let me try and explain. In a strange way, it wouldn't matter if the bill was written in French and demanded everyone spoke Chinese. Obviously this is, for want of a better phrase, totally  crazy just like the less visionary parts of the bill.
It doesn't matter how crazy the idea is though in a good performance management framework.

This bill must prove itself better than what existed before, Mr Offord. Do you know what, empirically, is happening in your ward? And could you guarantee that things will be better because of this Bill?

I'm being facetious. Of course you can't. My guess is you don't have a decent, representative knowledge of how local services are actually doing. The performance management data, if it exists, isn't something you have to hand and in the debates about the pros and cons of this Bill there isn't any attention given to its empirical value.

The children's services approach to performance management is significantly ahead of other areas of social care. It saves lives and prevents more disasters than baby p or Victoria climbe from happening.

Adult social care needs robust performance management. Any new legislation must prove itself through improving the average or raising the minimum standard. This must be measured rather than assumed by rhetoric, right?

Anything less is hot air, isn't it?

Thank you for reading my views. Im sorry they're not well expressed but I hope you understand the message regardless.

One last and final point. I desperately want to die. When mental health and social care don't do their job properly this is the result. Please, I beg you, don't let the failures which led to me feeling this way happen to any other of your constituents. If there is any heart-driven vision purposing this Bill please, I beg again, make it that. Give us hope.

Yours sincerely

Arj subanandan

Ps

Feel free to reply by email.

- sent from my smartphone

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We It comes in part from an appreciation that no one can truly sign their own work. Everything is many influences coming together to the one moment where a work exists. The other is a begrudging acceptance that my work was never my own. There is another consciousness or non-corporeal entity that helps and harms me in everything I do. I am not I because of this force or entity. I am "we"