‘I was ever a fighter, so — one fight more’

A powerful judgment concerning the liberty of Ms Manuela Sykes has recently been published on BAILLII. This is another important decision which pushes 'best interests' decisions further towards a more subjective analysis, guided by a detailed and sympathetic analysis of the person's own (past and present) will and preferences, with a much greater acceptance of the 'dignity of risk'.  In short, this is a judgment which (I think) showcases the Court of Protection operating at the closest it can within the existing law to the 'new paradigm' of disability rights articulated in connection with the United Nations Convention on the Rights of Persons with Disabilities.  It also takes the case law on 'transparency' forwards by considering what happens when the person themselves wants to waive their rights to privacy.  This decision is a very fitting tribute to a remarkable woman.

Westminster City Council had authorised the detention of Manuela Sykes in a residential care home using the DoLS.  They appointed Ms Sykes' friend RS as her RPR, and he objected to her detention.  It was Westminster who applied to the Court of Protection to review the authorisation.  They appear to have done so under s21A MCA - which is critical if the detainee and her RPR are to obtain non-means tested legal aid (not all local authorities behave as badly as the unnamed authority Mr and Mrs D grappled with).

This case is well worth reading in full. Ms Skyes was described by DJ Eldergill as having 'had a dramatic life, and the drama is not yet over'.  She was a lifelong campaigner, an extraordinary and admirable woman.  She reminded me of many formiddable, forthright and wonderful women I have met at Quaker meetings - she called to mind Dorothy Day.  She was savvy - she had made an LPA for property and affairs (naming RS) and a 'living will'.  Whilst the purpose of the detention was not linked to any medical treatment proscribed in the 'living will', DJ Eldergill regarded it as a relevant statement of her wishes, feelings, values and beliefs - particularly to the question of 'life expectancy and how much time is left which has a value to her.'

Preventable

I imagine there is only one thing worse than your son or daughter dying at the age of 18, and that is learning that it was preventable. Yesterday Southern Health published the report of the independent investigation into the death of LB. That report found that LB’s death was preventable.

How does a young man drown in the bath in a hospital? 

LB had been diagnosed with epilepsy when he was 16. He had a seizure on Christmas day in 2012. It was thought that this might have been triggered by fluoxetine (Prozac), which he had started taking a few days beforehand. He was admitted to an assessment and treatment unit run by Southern Health on 19 March 2013.

When somebody is admitted to the unit, a medical assessment should be conducted – the investigators stated 'We find no evidence of a medical review on admission during which an epilepsy profile could have been completed.'  They also found that an epilepsy profile should have been compiled, but there was no record of this.  A risk assessment was completed on 22 March. It outlined risks posed by LB to self and others. It did not consider his epilepsy. Initially a decision was made to place LB on 15 minute observations. As the investigators noted:

'Fifteen-minute observations will not mitigate the risk of having a seizure when in a bath. It is possible to drown in a few minutes. As a result, any observations undertaken in relation to CS’ bath time should have considered remaining in sight or sound of CS throughout his bathing.'

In April LB was put on Risperidone – a medication which the investigators noted can lower the threshold for an epileptic seizure. There were signs that he may have had unobserved seizures. He had bitten his tongue, and when his mother visited she found him to be sleepy as he often was after a seizure. She emailed staff, but this wasn’t discussed at the next clinical team meeting. There were other signs – LB had also possibly been incontinent, had unexplained nose bleeds and his mood was unsettled. They moved LB downstairs and increased his night time observations, but investigators found no evidence that increasing his medication was considered, he was not referred to his neurologist, and his bath time observations were not increased.

Staff member “S3” – whose role is only described as a ‘senior clinical leader’ (p89) – was asked what his role was in overseeing the risk management plan for LB: ‘None, other than awareness of risk.’ The investigators observed that there were only five patients in the unit, and it would be ‘reasonable’ to expect S3 to have a comprehensive knowledge of their care plans and the precautions to be taken if LB had a seizure.

'CS had a bath on the morning of 4 July. He was seen in the bath by nursing staff at 09:00 and had been reminded that he was going out that day. Fifteen minutes later CS was found submerged in the bath. He died later the same day.'

The investigators concluded that LB’s death was preventable, defined as a situation where ‘professionals had the knowledge, the legal means and the opportunity to stop the incident from occurring but did not take steps to do so.’ 

Some more messages on the Mental Capacity Act 2005

This is another post on evidence given to the House of Lords Select Committee on the Mental Capacity Act 2005 from people with experience of having decisions made on their behalf under the MCA.  I'm afraid I haven't yet finished reading the volumes of evidence from the Committee, so I apologise for not spotting this sooner.  It was brought to my attention that the Committee has been on another visit - reported in the first volume of evidence (p647) - to meet people with dementia and talk to them about the MCA.  The meeting was hosted by The Forget Me Nots, a group of people with dementia from the area of East Kent, who meet regularly in Canterbury.

In their visit to the Forget Me Nots, people with dementia talked about their changing experiences of making decisions.  One person said 'It’s like the door is slowly shutting'.  Some people's comments suggested they were content for their loved ones to make some decisions - 'I was the main decision-maker … but now my wife can think it out better than I can' - and some expressed feeling more 'fragile' and wanting to be protected.  However, other people's views on other people making decisions were less positive, one person said, 'My wife has made decisions for me … it doesn’t feel good. I want to make decisions'.

Local authorities behaving badly

When HL was deprived of his liberty in Bournewood hospital without any legal safeguards, it took his carers - Mr and Mrs E - just under five months to secure his release.  Far too long.  The Mental Capacity Act 2005 deprivation of liberty safeguards (DoLS) were introduced to ensure that people in HL's position were afforded detention safeguards and a proper remedy to comply with Article 5(4) of the European Convention on Human Rights - the right 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.'  How's that working out?

Well, admittedly the DoLS don't apply in supported living, but it took Mr E's family about fourteen months to get Mr E home again, when he was unlawfully deprived of his liberty.  It took Mark Neary just under 12 months to get Steven Neary home again, using the DoLS.  And today we learned that it took Mrs D over a year to return home to live with her husband, after she had been deprived of her liberty using the DOLS.

The judgment in The (Unnamed) Local Authority v Mrs D was not a finding by the Court of Protection of unlawful detention, but was the Court's approval of a compromise agreement where the local authority agreed to pay Mrs D £15,000 and her husband a further £12,500 for violations of her Article 5 rights and both their Article 8 rights.  The facts of this case are chillingly reminiscent of what happened in Neary v LB Hillingdon.  

Same old same old: are supervisory bodies actually reading s39D?

We are now into the fifth year of the DOLS, and it seems that a third of supervisory bodies may not yet have read and digested s39D Mental Capacity Act 2005.  Let me spell it out, literally.  Supervisory bodies MUST make a referral to an Independent Mental Capacity Advocate (IMCA) under s39D where a person has an unpaid representative and either the detainee or the representative requests one or (and this is the important bit) the supervisory body has reason to believe one or more of the following:

• (a) that, without the help of an advocate, P and R would be unable to exercise one or both of the relevant rights;
• (b) that P and R have each failed to exercise a relevant right when it would have been reasonable to exercise it;
• (c) that P and R are each unlikely to exercise a relevant right when it would be reasonable to exercise it.

The Department of Health has published its Sixth report on the IMCA service (2012-13).  As is traditional, I put the data on the number of IMCA referrals under s39D for each local authority into a spreadsheet and matched it up with the number of authorisations that local authority had made under the DoLS.  This doesn't even take into account authorisations in relation to hospitals, and still the situation is dire.  Out of 146 local authorities for whom I had data*, a whopping 46 had not made a single referral under s39D.  Some of these had as many as 263 authorisations.  A local authority with 305 authorisations had made one s39D referral.

Against "mental age"

Why do so many judgments from the Court of Protection use 'mental age' to describe people with learning disabilities?  I've lost count of the number of judgments where this is used.  Presumably it's occurring because at some point an expert psychologist or psychiatrist has used the term in a report, but I really wish they wouldn't.

I remember learning about 'mental age' when I was an undergraduate studying psychology.  It's a concept derived from certain kinds of psychometric tests.  In the early twentieth century two psychologists - Alfred Binet and Theodore Simon - developed tests of children's verbal abilities to identify 'mental retardation', often for the purpose of diverting these children away from mainstream education.  It's origins were in creating a 'scientific' measure to justify exclusion from mainstream society.

Simon and Binet calculated mental age by working out the 'normal' performance of children of different ages on various tests they had devised; a child's 'mental age' was determined by which age group their performance on these tests most closely resembled. Simon and Binet's tests were an early form of Intelligence Quotient (IQ) testing, and a person's 'mental age' in fact has an arithmetically equivalent IQ score.  If a child's mental age' is the same as their chronological age, then their IQ score is 100 - the average score.  Because 'mental age' is calculated from IQ scores, the concept attracts all the criticisms of IQ testing in general.

Later on when I was an assistant psychologist working in neuropsychology I would be asked to administer psychometric tests, including IQ tests.  I used to hate doing this, reducing a person to a set of scores; it's one of the reasons I left working in psychology.  The tests we used asked some questions which were clearly culture-bound (I remember asking one young woman if she knew who Cleopatra was, she replied that they were an R&B girl group known for the hit song Comin' Atcha! - which is, strictly speaking, correct, but scored no points on the test).  Working in neuropsychology, I administered these tests to people with a wide range of possible conditions - from brain injuries, possible dementias, mental health problems.  I was only asked to calculate 'mental age' for a person with a learning disability.

I hate 'mental age'.  It's arithmetically redundant - we don't need to use it - but we do.  The British Psychological Society (BPS) issued guidance in 2000 which says:

'In practice, some clinicians are known to use child development scales or children’s intelligence tests to profile aspects of intellectual functioning of very disabled adults. Whilst, clinically, this may have some use in assessing performance on specific tasks, attempts to derive extrapolated IQ scores from the use of developmental scales or child intelligence tests constitutes extremely dubious practice and is not recommended. Likewise, the practice of referring to ‘mental age’ when reporting on the level of intellectual or social functioning of adults should be avoided.'

I think mental age feeds a perception that people with learning disabilities are like children.  These infantilising discourses are not only offensive, I think they are also dangerous.  They risk leading us to the view that people with learning disabilities should be treated like children.  Should be accorded similar legal rights to children.

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.