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

The Small Places has moved...

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.

Thursday, 6 March 2014

The Small Places is moving...

...but it's only a click away.  All the old posts have been moved to the new site, but I'll leave them up here so any older URLs don't break.  The new site is (I think) prettier, more accessible and also has features like enabling  you to follow it using email updates.  I hope you like it!

Tuesday, 25 February 2014

‘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.’ 

Wednesday, 19 February 2014

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'.

Tuesday, 18 February 2014

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.


Monday, 17 February 2014

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.