Eleanor Roosevelt, 1958

'Where, after all, do universal human rights begin? In small places, close to home -- so close and so small that they cannot be seen on any map of the world. Yet they are the world of the individual person... Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.' Eleanor Roosevelt, 1958

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The Small Places has moved to a new home here, including all the old posts. Any posts after 6th March 2014 will appear on the new website, but old posts are preserved here so that URLs linking here continue to work. Please check out the new site.

Monday, 6 January 2014

A message from Pembrokeshire

Happy new year!  As some of you may have already noticed, the House of Lords Select Committee on the Mental Capacity Act 2005 has published two volumes of the written evidence it has received and (most of the*) oral evidence, coming to a whopping 1832 pages of evidence on the Act.  I confess, I have not yet read it all...  I am sure the Committee were reading it over their Christmas dinners to get their report ready for February 28th!

One submission by twelve leading Court of Protection lawyers has been making waves in the Independent, which is the first newspaper to pay any serious attention to the Committee.  They have picked up on an issue raised by the lawyers and which I've written about here before - the extent to which judges meet with the people whose capacity and best interests they are determining.  It's good to see the media taking an interest in genuine human rights concerns instead of concocting wild conspiracy theories which distract attention from the real issues. (My drag-net has just picked up that the Mail is now covering the House of Lords Committee, with a headline which typically misunderstands what they are trying to report - the aforementioned barristers gave an example of 'a case in which an autistic young adult had all his teeth permanently removed to stop him self-harming, without the Court’s involvement' (emphasis mine), while the Mail's headline read 'Court orders autistic man's teeth to be removed'. Eh? Oh dear Daily Mail. Sigh.)

A lot of evidence submitted to the Committee is from the usual suspects - laywers, academics (including yours truly), medical and social work practitioners, public bodies, professional bodies, NGOs - a lot of it very interesting and thought provoking.  There is a fair bit of evidence from individual carers and relatives of people with disabilities or dementia, who have had dealings with the MCA or the Court of Protection. There are quite a few shocking tales of disregard for human rights in their stories.  But - at least so far as I can see (and it is possible that I am missing something here) - I can only see one piece of evidence which has attempted to capture what people who have first hand experience of being subject to the Mental Capacity Act (MCA) think about the whole thing.  New years honours go to Pembrokeshire People First for their submission, and the British Institute for Human Rights for producing the guide to giving evidence which this was based on.  It's so important that we listen to the voices of people who are directly affected by the Act, I'm going to repost below what they had to say here for you to read.

I think we need to think very long and very hard about the scarcity of research and evidence on the MCA from the very people who are subject to it.  We need to think about why not a single one of all the major and well conducted studies on the MCA that are being published (that I have found) has managed to capture the voices of people who are said to lack capacity about their thoughts on the MCA and its impact on their lives.  We need to think about why the CQC - despite increasingly valiant attempts - has not yet managed to capture the voices of people subject to the deprivation of liberty safeguards (DOLS), when it has managed to do this for the Mental Health Act 1983 for decades.  We need to think about why the call for evidence seems to have bypassed the major disabled people's organisations** and other self-advocacy organisations.

As a researcher, I am aware that it is extremely challenging to conduct research involving people who 'lack capacity'.  Not only are they a hard to access population, the level of regulation of research in this field is mind boggling, and part of that comes down to the research provisions of the Mental Capacity Act 2005 itself.  I'm not kidding when I say that the paperwork to just ask a person who may lack capacity how they felt about the capacity assessment process or a best interests decision in a research context exceeds that for depriving them of their liberty under the DoLS.  But whilst acknowledging these challenges - there is still no excuse.  We as researchers are failing (I include myself in this).  We cannot just settle for the perspectives of professionals and families on the Act, and assume this conveys what people who are directly affected by it feel about having their capacity assessed or being subject to best interests decisions or DoLS.  People manage to clear these access, legal and ethical difficulties when they want to do research on a population's mental capacity, or trial some intervention on them, or observe them in their care home or whatever.  My new year's resolution is to do everything I can in a current research project I am working on to ensure it tries to capture the experiences and views of people alleged to lack capacity in relation to the Court of Protection.

Anyway, without further ado, here is what the good people of Pembrokeshire People First had to say about the Mental Capacity Act.  For the first set of questions, each letter represents a different person - so their responses can be tracked across the different questions.  The second set of responses are taken from a group.  As you can see, people's experiences and feelings about the MCA and the extent to which they are able to make choices in their everyday lives are quite mixed:
1.  What do you think about people like social workers making assessments about what you can and cannot do?
a)  Sometimes it annoys me a bit – I usually make my own decisions. I think people make snap decisions without seeing me day to day, what I’m like when I get out of bed in the morning or when I go to bed at the end of the day.
b)  Social people are a waste of space. It was not until I had Sheila and PPF (advocates) that they did start listening to me. They listened to me after.
c)
d)  I think they (social workers) suffer from the condition themselves and they are judging other people. I think social workers predominantly think about themselves. We are just products to them, not people. You could probably go so far as to say that we are just cattle being herded.
e)  I can’t get out of bed on my own and I can’t do the bath myself. I need people to make assessments.
f)  It depends on who it is. I don’t generally get along with most people. Only some people understand me and I lack trust. I’d know as soon as I saw the person I’d be able to make my mind up about them. If it was someone I knew and liked I’d be happy with the assessment. For someone to do the assessment, they’d have to know me well otherwise it would go totally to pot.
g)  It’s wrong. I’ve got capacity to do things. Nobody should have the right to make decisions for me. From now on, I call the tune; it’s time people listened to me.
2.  Has that happened to you?
a)  People have made decisions like when I had my breakdown and they said I had to go to hospital. But the medicine kind of thing wasn’t done without kind of letting me know.
b)
c)  In the past – it made me pissed off.
d)  Of course I’ve been assessed many times. I thought it was a load of b.s.. I thought they were judging me. They were treating me like how they felt they wanted to treat me.
e)
f)  It might have happened to me.
g)  They got told: do not tell me what I can and cannot do. I try to do what my dad taught me. People wind me up telling me what to do. I just want peace.
3.  Have other people told you that you are not capable of deciding something? 
a)  Not that I know of.
b)  I can’t remember about that. I don’t think anyone ever told me what I can and can’t do.
c)
d)  They may have.
e)
f)  Yes, in (supported) houses. It’s mostly staff. They don’t think I’m as capable… they think I’m really disabled and can’t do much for myself when I really can do most things myself.
g)  I’m being treated like a disabled person not an able-bodied person.
4.  Have you experience of someone making decisions for you?
a)  Yes, they’ve tried to but I’ve usually given them a mouthful.
b)  Not really. I’ve always done everything myself.
c)  (For example) I’m not allowed to go for a walk by myself. It’s only because she (the manager of a supported group home) doesn’t want anything to happen to me. But I think I’m perfectly capable of going for a walk on my own.
d)  Yes, when I was wrongfully sectioned. I think it’s horrific how people treat people with disabilities. We’re always given the worst of it.
e)  Mum has over the years. Someone has to do that but I want to make my own decisions.
f)  They have done. I don’t like it.
g)  At my family member’s funeral, other people made decisions for me.
5.  Are you always supported to make your own decisions?
a)  Not always, no. Even when I’ve had a problem I’ve had to sort it out myself. Apart from PPF (advocates) I’ve never had any help off anyone else.
b)  Most of the time I don’t have anybody. I just do it by myself… My husband always helped
me when he was alive. Now I just have to cope on my own unless I have Sheila
(advocate) or someone like that that.
c)
d)  I’ve been supported by advocates. I’m being supported by my mum. Other than that, no.
e)  I don’t know about that. I would like more support. When I move I’ll have to stick up for myself… I’m happy to stick up for myself.
f)  Most of the time but sometimes they choose for me. It depends who it is. If they choose for me it makes me really cross and angry. I don’t like them making up my mind for me.
g)

Mental Capacity Act – Group Responses
1.  What do you think about people like social workers making assessments about what you can and cannot do?
It’s okay. She (the psychologist) means well; she’s doing that for me so I can have more freedom. But I would be annoyed if someone told me what to do.
Say I’d got a timetable what to do they (social workers) tell me what to do, not what I want to do. You ought to make your own decisions.
So long as you’re with your social worker and you are involved, it’s alright. If someone’s doing an assessment without you (there), that’s annoying.
That’s where Person Centred Planning comes in so you can have your own voice to speak up for yourself. It’s all about preparing beforehand and always involving the person. 
2.  Has that happened to you?
[Four out of five said they had experience of this. There was only one additional comment.]
My social worker, doctor and nurses (did that) but your assessment should be about you doing it.
3.  Have other people told you that you are not capable of deciding something?
4.  Have you experience of someone making decisions for you?
[Note: questions 3 and 4 were taken together.]
Yes. I say I make my own decisions myself but I’m not listened to.
Yes. I said to them I can look after myself but other people made decisions. I had no choice.
I argued and argued but they said I had no choice. I thought I’d like to get out of there because I wasn’t listened to.
The only person who can make decisions for you is you, yourself.
5.  Are you always supported to make your own decisions?
[Four out of the five said ‘no’. Additional comments follow.]
There’s always someone from social services you’re not happy with.
If you’re capable of making decisions on your own, you do. On my own experience, I’m not going down the social services route because they’re awful.
Sometimes it’s good, sometimes it’s not. It all depends on what it (the decision) is about.
Sometimes support workers make decisions for me but I’d like to make my own decisions.
Because I’m in supported living it’s difficult for me to make my own decisions.

*There are a few oral evidence sessions I can't find in there - including the evidence from the judges - I'm not sure if I'm missing something?
**A disabled people's organisation (DPO) is an organisation which is user-led by people with disabilities, rather than being 'about' or 'for' people with a particular disability.

3 comments:

  1. Happy New Year Lucy !
    Thank you for this posting -- such powerful voices indeed and I have circulated to our BIAs and MCA trainers !
    We have long suspected that in order to support decision making of P, one has to spend some therapeutic time to earn their trusts !
    We really still have such a long way to go in not only to publicise the existence of the MCA but also to promote best practice and thanks to your blog, we are making some headway !
    And you may find the attached link interesting !

    http://www.lse.ac.uk/newsAndMedia/videoAndAudio/channels/publicLecturesAndEvents/player.aspx?id=2164

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    Replies
    1. Thanks Joseph! I really do hope that we can get more information about how people feel about having their capacity assessed or the best interests process, not to mention the DoLS.

      Thanks very much for the link to the LSE lecture - I hadn't seen that, it looks very interesting.

      Happy new year!

      Delete
  2. What do you do when you know your loved one lacks Capacity and will always be that way for life but, the 'Secret Behind Closed Doors CoP' collaborated and flawed the assessment on Capacity just to ensure that our Family "never" our loved one again?

    ReplyDelete