A message from Hammersmith and Fulham

A few weeks ago I posted A message from Pembrokeshire; a transcript of the evidence submitted by Pembrokeshire People First to the House of Lords Select Committee on the Mental Capacity Act 2005.  I posted their evidence in full because it was (I think) the only evidence submitted to the Committee from a self-advocacy organisation about the MCA.  As I wrote at the time, whilst there is a huge amount of research on the views of carers, social workers, doctors, lawyers and others on the MCA, there is a (shocking) dearth of evidence on the views of people with cognitive and intellectual disabilities and mental health problems on having their capacity assessed and having decisions made on their behalf.  The only study I have been able to find which has looked at this was conducted by the European Union Agency for Fundamental Rights; this only touched on the UK very briefly, but did not present an especially positive picture of people's experiences of having decisions made in their 'best interests'.

However, the House of Lords Select Committee - specifically Lord Faulks, Lord Hardie and Baroness Barker - went to meet people with learning disabilities in Hammersmith and Fulham to ask them about their experiences of making decisions, being supported to make decisions, being prevented from making decisions and being sidelined in decision making.  The notes of their visit  are really interesting.  They offer a real insight into the range of experiences that people with learning disabilities have of being supported (or not supported) to make decisions, and of being involved (or not involved) when others make decisions for them.  As it's quite long, I won't summarise it here - but I really recommend reading it.  

Discharges from detention by the Tribunal under the Mental Health Act 1983

The Care Quality Commission's annual report on the Mental Health Act 1983 (MHA) contains data on applications to, and discharges by, the First Tier Tribunal (Mental Health).  The Tribunal has powers under the MHA to confer an absolute discharge, delayed discharge or (in some cases) conditional discharges on detained patients.

I was looking at these data and wondering if the rates of discharge by the Tribunal vary for different types of applicant.  It turned out that they do - restricted patients are most likely to be discharged, followed by patients detained under s2 MHA whilst unrestricted patients detained under other parts of the MHA were the least likely to be discharged.

I have recently been learning to use two new (open source) software packages: R for statistics and Inkscape (a vector based graphics program).  I am learning these because I want more flexibility in presenting data than Excel or SPSS can give me.  I was practising with these packages on the MHA Tribunal data and made this chart, based on a 'recipe' from a book called Visualise This.  I'm not sure if it's helpful to anyone, but I thought I'd share it anyway, and I've put it on a power point slide here in case you want to use it.  Pie charts should be avoided when you have a large number of variables.  but I wanted to use them here because I can convey the number of people the Tribunal made discharge or no-discharge decisions for using the area, and the proportion of people discharged by the Tribunal by the angle of the slice of pie.



As an aside, the data from CQC on Tribunals don't quite add up to 100%.  The number of hearings is greater than the total number of 'discharge' and 'no discharge', presumably because some hearings did not result in a decision either way.  I also haven't included the number of people who applied for a Tribunal hearing but either withdrew their application or were discharged prior to the hearing.

Does the public oppose 'euthanasia', or a loss of autonomy in end of life care?

ComRes has recently published a poll commissioned by the anti-euthanasia organisation Alert, ostensibly about the Mental Capacity Act 2005, but in fact about a very specific category of end of life decisions, concerning the withdrawal of hydration.  The survey asked two related questions:

Q1. Under the Mental Capacity Act, doctors can allow people who cannot communicate for themselves to die of dehydration, if they think that it is in the patient's “best interests” and if they believe their death to be approaching soon. Would you  support or oppose a change in the law to prevent this from happening... If the patient has asked to be given water if necessary through a tube in advance of them losing their ability to communicate?

They found that 58% of people supported a change in the law, that only 17% opposed it and 25% of people responded 'don't know'.  The percentage of people supporting a change in the law increased with age.  This headline finding was reported in Christian Today as 'Euthanasia by dehydration lacks public support'.

But ComRes asked another question about withdrawing hydration, which had rather different results:

Q2 Under the Mental Capacity Act, doctors can allow people who cannot communicate for themselves to die of dehydration, if they think that it is in the patient's “best interests” and if they believe their death to be approaching soon. Would you  support or oppose a change in the law to prevent this from happening... If there had been no mention about whether water should be provided or not, in advance of them losing their ability to communicate?

In response to this question, the number of people supporting a change to the law which permits the withdrawal of hydration from a person approaching the end of their life fell by almost half, to 33%.  The number of people opposing a change in the law rose to 28%, and the number of people who responded that they didn't know increased to 39% (the largest category).

The crucial difference between the two polls is whether decisions around the withdrawal of hydration respect a person's previously expressed wishes.  In the first poll, there was public opposition to the withdrawal of hydration where a person has specifically said that they would want to be given water in these circumstances, but this opposition to the withdrawal of hydration dramatically decreased where a person's wishes were unknown.

So did ComRes find opposition to euthanasia in their poll?  It looks, to me, like what the poll actually found was public support for an approach to end of life decisions which was founded on a person's previously expressed views, rather than 'objective' best interests.  People can make 'advance decisions' refusing treatment for future loss of capacity - and many people do make advance decisions refusing life sustaining treatment.  But there is a long line of legal authorities - from Lesley Burke through to David James' cases - finding that people cannot request to be given particular treatments.  And whilst their past expressed preference for treatment is one factor that would be taken into consideration, it could still be trumped by other 'objective' factors in a best interests decision.  I'm not sure that ComRes did find opposition to euthanasia per se, so much as opposition to a state of affairs where a person's past expressed wish to be tube fed water in end of life care can be overridden.

Framing the test of capacity to consent to sex

The Court of Appeal has just handed down a very important judgment on the nature of the capacity to consent to sex.  In IM v LM it considered issues which have been debated back and forth between different judges in the criminal and civil courts since before the Mental Capacity Act 2005 (MCA) came into force.  Two of the key issues which different judges seemed to disagree over were:

1. Is the 'test' of capacity to consent to sex 'issue specific' (ie. is the test just about sex in general) or 'person and situation specific' (ie. are there issues around sex with this particular person, at this place and time, as well)?
2. Does the test of capacity to consent to sex involve merely a need to 'understand' the information, or also an ability to 'use and weigh' the information?

These might sound like rather dry issues, but in fact they go right to heart of fundamental questions about liberty, privacy, autonomy and power in the sexual relationships and in the lives of people with cognitive and intellectual disabilities.

A secret court no more!

So unless you missed the Daily Mail’s blaring headline 'At last, a victory over secrecy in the courts' - the big news is that the Court of Protection is a ‘secret court’ no more! The Independent even ran a story with the headline “Formerly secret court…”

Yes, Sir James Munby has published his Practice Guidance on ‘transparency’ – specifically on the publication of judgments of the Court of Protection and the Family Courts, but also touching upon other issues. There are separate guidance documents for the Court of Protection and for the Family Courts, but they are quite similar and try to harmonise the approach across both courts, despite differing rules. They’re really quite short, but I’ll summarise what it says here anyway:

Whose right is it anyway?

This lovely postcard is from George Julian’s website, which she set up to help LB’s family raise funds for legal representation at LB’s inquest. The website is fantastic – with a world map of destinations for postcards of LB’s buses and other pictures, sold as part of the fundraising effort. So many people, all over the world, moved by LB’s death. I hope our buses postcards keep us thinking and reflecting on how deaths like LB’s can be averted, and what a waste of a beautiful and talented person’s life it is for them to die whilst incarcerated.

Photograph of a postcard reading 'Everyone has the right to life, liberty and security of the person'. The image is of a person reaching towards the sun. The postcard appears to be based on a collage, made by cutting out pieces of paper in simple shapes.

George bought the postcard at the United Nations, and the text is from Article 3 of the Universal Declaration of Human Rights (UDHR). The picture is especially apt for something I’ve been wanting to blog (rant) about for some time now: the universality of the right to liberty.

The right to liberty is contained in many human rights instruments, and most include a right for detainees to take proceedings before a court to determine the lawfulness of their detention. These rights of ‘appeal’ are framed in universal language as well.  Article 5(4) of the European Convention on Human Rights (ECHR), sets it out like this:

‘Everyone who is deprived of his liberty by arrest or detention shall be entitled to take proceedings by which the lawfulness of his detention shall be decided speedily by a court and his release ordered if the detention is not lawful.’

The Mental Capacity Act 2005 deprivation of liberty safeguards (MCA DoLS) were in part created because there was no obvious, accessible or appropriate means to bring proceedings to determine the lawfulness of the detention of ‘incapacitated’ people, detained under the ‘common law’. The mechanism for challenging detention under the DoLS is s21A MCA – which allows an applicant to ask the Court of Protection to determine the lawfulness of various aspects of a standard authorization for detention issued by a supervisory body (a local authority exercising its DoLS functions). The Court of Protection may vary or terminate standard authorizations as it sees fit. The trouble is, this ‘appeal’ mechanism is pretty obscure and is poorly understood.

Sign Age UK's petition to close the human rights loophole in care!

I've written many times before on this blog about the utter disgrace that users of private and independent sector care services are not protected by the Human Rights Act 1998.  This is because of a 'loophole' which arose out of a controversial ruling by the House of Lords in a case called YL v Birmingham City Council.  In that case, the House of Lords prioritised poor old Southern Cross' right to make a profit* over the rights of an elderly lady with Alzheimers whom they wanted to evict from the care home where she lived because they had fallen out with her family.  Mrs YL's lawyers were concerned that transferring her to another care home in such a late stage of her Alzheimer's could seriously harm her health, and perhaps even cause her death.

Campaigners have been trying to close this loophole for years now.  Every so often somebody will introduce a private members' bill or an amendment to another piece of legislation to sort it out, and the government of the day won't get behind it (Paul Burstow MP has been particularly persistent in trying to fix this issue, sadly without success).  The Labour government introduced an amendment to the Health and Social Care Act 2008 which said that if care was arranged under the National Assistance Act 1948 then the care provider was 'public authority' for the purposes of the HRA.  Unfortunately, this didn't protect people using services arranged under other statutes, such as statutes to provide services to people in their own homes (as opposed to care homes) or aftercare for people who had been detained under the Mental Health Act.  In any case, the new Care Bill going through Parliament at the moment will repeal these statutes - and so the amendment which protects service users who are placed under the National Assistance Act 1948 won't apply any more.  Peers in the House of Lords have introduced an amendment to the Care Bill to ensure that everybody using care services are protected by the HRA.  

The government is now trying to remove the clause in the Care Bill which would mean that care service users were protected by the HRA.  Age UK have launched a petition to retain clause 48 - the clause which would mean care service users are protected by the HRA.  I strongly, strongly, urge you to sign it.