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

Friday, 17 May 2013

Membership of House of Lords Ad Hoc Committee on the Mental Capacity Act published

A motion for the members of the House of Lords Ad Hoc Committee on the Mental Capacity Act 2005 has been published today.  The proposed members are:
Some of those names will be familiar to those in the mental health world.  Lord Hardie - the Chairperson - is a very senior lawyer.  There are quite a few medical professionals and lawyers. Lord Patel, of course, was until recently the chair of the Mental Health Act Commission.  Baroness Browning was involved with the original Bournewood Case and made several interventions in parliament during the drafting of the DOLS (including asking sensible questions like 'what does deprivation of liberty mean?' and 'do you think we've allocated enough resources to this?').  She was one of the people who called for post-legislative scrutiny of the Mental Capacity Act.  It is a shame that there are no peers with a disability rights background on this Committee, such as Baroness Campbell or Baroness Grey-Thompson, but hopefully the Committee will take an interest in the disability rights debates surrounding the Mental Capacity Act.

Just as a reminder, this is why the Committee were appointed:

A post-legislative scrutiny committee on the Mental Capacity Act 2005
52. The Ministry of Justice published the post-legislative scrutiny memorandum for the Mental Capacity Act 2005 in October 2010.13 Following publication of the post-legislative memorandum the House of Commons Select Committee on Justice held an evidence session with the Public Guardian and the Director of the Royal Courts of Justice Group, and the House of Commons Health Select Committee has similarly heard a limited amount of evidence.
53. The Act provides a legal framework for making decisions on behalf of adults whose mental capacity is impaired. It was substantially amended by the Mental Health Act 2007. The Mental Capacity Bill was subject to pre- legislative scrutiny. A post-legislative review of the Act would not only provide an important opportunity to consider the issues above but it could look at how the pre-legislative scrutiny process influenced the passage of the Bill, whether issues that were raised in pre-legislative scrutiny were ignored and whether any such issues have led to problems since the Act came into force.
54. The Government’s post-legislative memorandum suggested that the legislation was working well other than in a few “small and technical” areas. This view was broadly upheld in 2010 by the Public Guardian’s evidence to the Justice Committee. Since that date concerns have been expressed that the procedural safeguards in the Act may be inadequate to satisfy the requirements of the Human Rights Act 1998. The Mental Capacity Act was amended in the light of the Bournewood judgment which found the UK in breach of Article 5 of the ECHR. The recent findings about the treatment of residents at the Winterbourne View care home, together with a recent Mencap report highlighting deficiencies in the care of mentally disordered patients, suggest that the legislative regime for mentally incapacitated adults would merit scrutiny by a House of Lords post-legislative scrutiny committee. Such scrutiny could include consideration of external oversight of the decisions made on behalf of incapacitated individuals by medical professionals and guidelines on “best interests” decisions, where social workers and others have taken over decision-making in areas such as personal welfare, type of care or financial affairs on someone else’s behalf.
55. We recommend the appointment of an ad hoc post-legislative scrutiny committee to examine the Mental Capacity Act 2005, to report before the end of the 2013–14 Session.

The Committee has powers to appoint special advisors, to send for persons, papers and records, to 'adjourn from place to place' within the UK and take and publish evidence.  It will report by 28th February.

Thursday, 16 May 2013

The beauty of BAILII and RSS feeds

Ever wished you could have all the published cases about a particular topic or mentioning a particular key term piped directly to you?  Well, wish no longer, because the answer is here!

I am, as many bloggers are, a feed-monkey.  I love RSS feeds, the way they pipe blogs I follow and other feeds directly to my RSS reader, so I don't have to visit each site in turn (I am currently mourning the impending doom of Google Reader, but having a play with Feedly as a replacement).  For some time now I've been thinking, 'wouldn't it be cool if there was a way to set up an alert on BAILII for a particular keyword.  It's really tricky to do though - you can't use Google alerts as BAILII blocks search engines (here's why), and I found having to manually re-check BAILII'S search engine every week or so for new cases rather tiresome.  I dreamed of an RSS feed for ECtHR cases on legal capacity and guardianship, or one for UK cases on the Mental Capacity Act, but the consensus on twitter was that it couldn't be done... Until today, when clever old Judith Townend (of Meeja Law) worked out that you can set up a BAILII search using BAILII's own internal search engine (sorting by date), and then turn that into an RSS feed using Feedity.  It's so easy, you could easily set one up for your key-term tipple of choice.  You could play with setting up alerts for particular citations, judges, statutes... the possibilities are endless.

Monday, 13 May 2013

Advance Decisions: Documenting End-of-Life Wishes - the Legal and Ethical Framework.

Cardiff University are currently hosting the 'Before I Die Festival', a whole series of events about dying, for the living. Events range from music, art, poetry, theatre and film to expert panels and public debate.  On Monday 20th May, from 6-8pm, there is a seminar on advance decisions and documenting end of life wishes.  Talks include:
  • Professor Luke Clements, Law School, Cardiff University on The Mental Capacity Act and Advance Decisions
  • Philip Satherley from the charity Compassion in Dying about the template forms and information line they offer
  • Professor Sue Wilkinson, Social Sciences Dept, Loughborough University on what people say about why they want to write Advance Decisions 
  • Professors Jenny Kitzinger and Celia Kitzinger, Directors of the Cardiff-York Chronic Disorders of Consciousness Research Groups about how people who have family members in comas, vegetative states and minimally conscious states write ADs. 
  • Dr Anne-Marie Slowther , Chair of the UK Clinical Ethics Network and Associate Professor of Clinical Ethics at Warwick Medical School on "What if I change my mind?" 
  • Professor Penney Lewis, Law School, Kings College London on ADs and the Courts (including XB [2012] EWHC 1390 and D [2012] EWHC 885)
  • Nancy Berlinger, The Hastings Institute, on the experience of advance directives and other advance planning arrangements in the USA 
This particular seminar is part of an ESRC funded series of seminars on the topic.  The last one I went to was brilliant - really interesting and informative, with a range of views and perspectives.  The flyer is here:

Wednesday, 1 May 2013

What if...

It's been a really exciting week for me at the Centre.  On Monday we had the conference on supported decision-making (which I tweeted about) and today we were really spoiled as one of the delegates, Cher Nicholson, came to give a workshop on a project she ran in South Australia on supported decision making.  If you ever get the chance to go and see Cher speak about the project, I really really recommend that you do - it is relevant to everybody who comes into contact with issues around 'mental capacity' - from people said to 'lack capacity', to their friends and family, to social services, care providers, lawyers and disability NGOs.  It's one of the most inspirational things I've seen in a long time.

Anyway, enough adulation and down to brass tacks.  What was this project and why is it exciting and why should everyone in the UK (and my new home, Ireland) be thinking about it?  The project was set up by the Office of the Public Advocate (OPA) in South Australia.  Now, despite the name, the role is closer to the Office of the Public Guardian in the UK, only they actually provide the guardians - they don't just register and monitor them (apparently in South Australia they don't use social workers or solicitors as guardians - if family can't be the guardian, then OPA provide one).  Apparently (I'm being too lazy and not looking this up) South Australia has very high rates of entry into guardianship, and they were looking for a project to explore alternatives to guardianship.  So the project was initially conceived by OPA to look for ways to support people to make decisions for themselves, to avoid entry into guardianship, and they employed Cher Nicholson to coordinate it.

Monday, 29 April 2013

Today's legal capacity conference... in 100 (or so) tweets

If you couldn't make it to today's conference on Supported Decision-Making, organised by the Centre for Disability Law and Policy and Amnesty Ireland, then fear not!  For I live-tweeted the whole event in a twitter marathon and have 'storified' it so you can read it here without even needing to venture onto Twitter.  So, if you want to know what Gabor Gombos, Gerard Quinn, Cher Nicholson, Maths Jesperson, Rory Doody, Ignacio Campoy Cervera, Aiofe Day and Colm O'Gorman had to say about supported decision making, legal capacity and the Irish Law Reform process, then read on!  Amnesty will also be posting videos of the event on their website, here.

It was a brilliant day, really thought provoking.  I think the best thing about today was moving away from talking about problems towards discussing solutions.* I'm busy wondering how we can persuade some enterprising UK and/or Irish NGOs to set up a supported decision making pilot modelled on the South Australian project, or getting mental health teams to look into commissioning projects modelled on the hugely successful (and money saving...) Personal Ombudsman scheme...  Any thoughts?  If you want to read more about the amazing Personal Ombudsman scheme, I've just found a link to another presentation (doc) by Maths Jesperson which covers a lot of the same ground as today's talk.

*I don't mean the problems should be ignored, it's just that sometimes it feels as if this is the only conversation we are having, and we lose sight of the exciting work that is being done on supporting decision making.

Friday, 26 April 2013

Donate to Action Aid for the Bangladesh factory collapse victims

This isn't about capacity or care, but it is about human rights.  I'm sure you've all heard about the collapse of the garment factory in Bangladesh this week, killing at least 300 people and injuring over 2000.  Inspectors had warned that the factory was unsafe only the day before and requested evacuation and closure.  The factory supervisors refused, the workers continued to produce clothes by Primark, Bennetton, Monsoon and other high street brands in the West, and the factory collapsed the next day.

In the short term, the priority is clearly to get aid to the trapped and injured workers, and their families.  Victoria Butler-Cole (of 39 Essex Street fame) has set up this great 'Tax your T-Shirt' site where you can donate to Action Aid to support victims of the disaster.  There are, however, much more fundamental questions about the rights of workers who make the clothes we wear.  If you are interested in finding out more about who is making your clothes, their rights and how you can help to improve conditions in the global garment industry, you could check out the work of Labour Behind the Label (you might want to see what the brands you buy are doing to improve working conditions).

When is a Direct Payment, not a Direct Payment?

Direct Payments were introduced in the 1990's, after much lobbying by disability campaigners, to allow users of local authority care services to receive cash in lieu of state-arranged services to meet eligible needs under the many and various community care laws.  The idea was to give people greater choice and control over the way their support needs were met - so, for example, instead of relying block-contracted or local authority providers of domiciliary care, a person could use the cash to employ a personal assistant (PA) - giving them control over important things like who supported them, when, and on what terms. (If you've never dealt with a domicilliary care provider, you might not appreciate what a struggle it can be just to get them to send you somebody you like, or at least don't mind, and at a time that is convenient to you.  You might get a multitude of workers turning up at all hours of the day except the ones you want, staying for 15 minutes while you explain your particular care needs, then having to bugger off again to travel halfway across town (worker unpaid for that time, more likely than not) to offer somebody else a choice between having a wash or having breakfast as they're running late.  Did working in domicilliary care leave me cynical?  Well, it's not just me, see the EHRC report on home care services).

To return to the topic, direct payments are bloody brilliant for some people, but they don't work for everyone.  In particular, they're not brilliant for people who aren't able to manage the complex accounting, commissioning and employment (if they use a PA) side of things, or haven't got anyone else willing to do so on their behalf.  Various people have raised 'safeguarding' concerns about privately arranged care, but they're too complicated to discuss here.  Also, even though Direct Payments were about giving people more choice and control, you might find that the level they're set at is so low the only 'choice' you have is the cheapest service on the market.  And, increasingly it seems, local authorities are finding ways to continue to exercise a degree of control over how you spend the money...