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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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.'



The chronology sets out how Ms Sykes had Alzheimer's dementia, and experienced a gradual but progressive decline in her ability to understand and process information about her environment and the people around her.  There were (untried) allegations that she had a number of verbal and physical altercations with neighbours and carers.  She did not permit visiting carers to offer much assistance with personal care or cleaning her home.  Her weight dropped, the apartment became 'unhygienic and so cluttered as to be hazardous'.  She was eventually detained under s2 Mental Health Act 1983.  She was eventually discharged to a nursing home, rather than her own home, in her 'best interests'.

She was unhappy at not being allowed home, and had threatened suicide if she could not return home.  Consideration was given of a trial return by the Community Mental Health Team.  A decision was initially made that she should have a trial return home, possibly with a live in carer.  However, later on the local authority felt this was not in her best interests, and would not approve payment for a live in carer.  Her family felt that equity release to fund care at home was not a good use of her financial resources.

DJ Eldergill found that Ms Sykes lacked mental capacity, however he did observe in passing that:
It is recorded that she has a tendency to become defiant when these issues are raised. This is logical and understandable because, unless one has a memory of the previous difficulties, the professional view must appear patronising and intrusive, and the problems made-up or grossly exaggerated.
I've noticed a growing tendency of judges in the Court of Protection - exemplified most recently in Re JB - to be increasingly alert to the reality that capacity assessment comes down to an exchange between assessor and assessed, and often people may refuse to engage with that assessment for reasons related to how they feel about the capacity assessor, or because it is human nature to be reluctant to engage with the issues capacity assessments often probe.

Thus the question before the court was whether the detention was in her best interests.  'Patently', DJ Eldergill observed, Ms Sykes was deprived of her liberty: this 'situation is not of the subtle Cheshire West kind'.  Regarding what outcome was preferable, DJ Eldergill commented that 'There is, of course, no solution', no option that would 'provide Ms S with security, safety, liberty, happiness, an absence of suffering and an unrestricted home life'.  

DJ Eldergill paid considerable attention to Ms Sykes' wishes and preferences.  He himself met with her at her nursing home in the company of her solicitor.  He noted the consistency of her wishes, the impact on her mental health of remaining in the nursing home, ' her attitude towards institutional life and the importance to her of her freedom. She values her privacy and the sense of security at home.' She was still 'able to appreciate and express the value of being at liberty and being allowed autonomy.'  DJ Eldergill placed great emphasis on the value of liberty:
The importance of individual liberty is of the same fundamental importance to incapacitated people who still have clear wishes and preferences about where and how they live as it is for those who remain able to make capacitous decisions. This desire to determine one’s own interests is common to almost all human beings. Society is made up of individuals, and each individual wills certain ends for themselves and their loved ones, and not others, and has distinctive feelings, personal goals, traits, habits and experiences. Because this is so, most individuals wish to determine and develop their own interests and course in life, and their happiness often depends on this. The existence of a private sphere of action, free from public coercion or restraint, is indispensable to that independence which everyone needs to develop their individuality, even where their individuality is diminished, but not extinguished, by illness. It is for this reason that people place such weight on their liberty and right to choose.
He observed in passing that 'The law requires objective analysis of a subject not an object' (language reminiscent of the literature on the CRPD).  He interpreted the principle of beneficience as 'an obligation to help others further their important and legitimate interests. In this important sense, the judge no less than the local authority is her servant, not her master.'

Eldergill's decision was heavily contextualised by who Ms Sykes was, and is.  She had an unambiguous sense of right and wrong, never lacked courage, she had a strong will to change the world: 'she has always wanted to be 'someone', to have influence.' These and 'her desire for freedom and autonomy are magnetic factor'. DJ Eldergill then characterised the case itself in a striking way, as a political act by Ms Sykes:
Realistically, this is her last chance to exert a political influence which is recognisable as her influence. Her last contribution to the country's political scene and, locally, the workings and deliberations of the council and social services committee which she sat on.
DJ Eldergill heard that Ms Sykes' nieces and Reverend felt that she should remain in residential care, he accepted that there were serious risks, but asked regarding a trial at home 'If not now then when?'  He emphasised the importance of home, that some of the risks could be managed (but not eliminated), the reality that risks of falling exist in a care home as well as at home, and that 'Ms S is 89 years old and her life is drawing to a close. It is her life.'  He authorised a one month trial at home.

Before finishing, you might be wondering why - unusually - Ms Sykes was named in this judgment.  The judgment reports that 'Ms S’s ‘strong wish’ was for her situation to be reported and to be named as the person with whom these proceedings are concerned.'  Her litigation friend supported her request.  The Press Association were notified  and applied for permission to name Ms Sykes.  DJ Eldergill considered the privacy matters (with the cracking line, which I'm sure will be taken up henceforth in 'transparency' debates: 'a GP is not a ‘secret doctor’ because the press have no unqualified right to be present during patient consultations or to report what is said').  He reviewed the transparency guidance and case law, and concluded there was good reason for allowing Ms Sykes (but not her RPR or family or professional carers) to be named, on the basis that:
She has always wished to be heard. She would wish her life to end with a bang not a whimper. This is her last chance to exert a political influence which is recognisable as her influence. Her last contribution to the country's political scene and the workings and deliberations of the council and social services committee which she sat on.
By choosing to be named, there is a much greater likelihood that this case will prompt discussion of a wide range of important matters - from the value of liberty for those found to 'lack mental capacity', to the reality that there is not adequate funding in the social care system to safely support people to remain in their own homes.  Ms Sykes may have been found to lack mental capacity in relation to her own care, but she seems to have a profound understanding of the political.

Postscript (27/2/14)

Ms Sykes' story has been covered by many national newspapers now - as she wanted.  There is a powerful interview with her from 2011 on the Trebus Project, which collects the life stories of people with dementia.  I wanted to quote from some of what she said.  In the context of talking about her lifelong campaign to raise awareness of ill-treatment of animals, she said:
But now I’ve seen people treated just as badly… people in care… people with dementia… drugged and sedated with a cup of tea and a digestive biscuit… It shows contempt for the elderly… It’s been like that for gener-bloody-rations…
It has been getting worse for the past couple of decades… To make a change in care we need to make a change in the politics of care… (a) It’s ignorant and (b) it’s… indefensible… cheaper and easier.
Dementia… I was told mummy had it… I was told I would get it… I was told. I was told that it hits more women than men… and older people… and mostly women… they’re marginalised… and stigmatised… and hidden. I’m very distressed at the way the subject is avoided.
It is rare for a carer to have real integrity, and I should say this applies to the people that run the so-called care homes… They take advantage in so many ways, including theft... If you examine the character of quite a lot of people involved in… quote ‘care’… you do a bit of research and… you’ll find a lot of people involved in care are… are… bossy boots… I did an article on that… Go and read it in the British Library… Forty years of it… I raised quite a mail bag… most of it unprintable… They really were very angry… I’m blunt… I don’t believe in wasting words… I had the experience of nursing Mummy… I’ve seen what happened in the hospitals…
[...]
Dementia care in this country doesn’t exist... The problem is that… a great many people who are supposed to be carers… have contempt… for the loss of memory… and… the mental problems that that leads to… and take advantage of it. They behave in the most diabolical way and think they can get away with it… because… no one would believe the poor woman with dementia.
Ms Sykes recalls writing an article on this; I haven't been able to find it on Nexis or elsewhere, but if anybody knows where it is I'd be really interested to see it.  You might also be interested to know that the title of this piece is from a poem called Prospice by Robert Browning, which is quoted in the judgment.

2 comments:

  1. I was very interested by your item on the Court of Protection decision concerning Manuela Sykes' wish to be cared for at home rather than in the care home where she had been placed by Westminster City Council. There are all sorts of reasons why this case is especially poignant for me.

    As a student at Cambridge back in the ‘60s, I came across Manuela Sykes as a politician working within the Eastern Region of what was then the Liberal Party. She was an inspiration to some of us, although I suspect regarded as high risk by others in the party at that time, who might have breathed a sigh of relief when later she moved to Labour. Whatever party she joined, I believe she would have been a thorn in the side of many because of her strong spirit of independence and autonomy - factors that seem to have been rightly recognised in the Court's decision. Anyway it was in part her inspiration that meant my final year of study was largely spent on leading the student political opposition to the Vietnam war and to apartheid

    After the ‘60s, I lost sight of Manuela Sykes' political/campaigning activities but have never forgotten the energy and conviction with which she pursued her aims. It's clear though that these personal qualities never diminished.

    In recent times, I have done some intermittent work researching and writing e-learning materials for people working in social housing organisations. The last two courses I've compiled have been on mental health and housing, and older people and housing. They are aimed mainly at front line staff and their team leaders/managers. Inevitably, this has involved providing introductory materials on mental capacity, dementia, social isolation and so on. So now to find Manuela Sykes stirring the pot about dementia care, and inspiring the judge in her case to give what is a remarkably thoughtful judgment on mental capacity/deprivation of liberty, brings my recollection of her full circle.

    More than this though, in 2012 my family tree research led me to find and meet a cousin of my father's who had provided care to my grandmother back in the 1940s and '50s. When I met her, she was in the early stages of vascular dementia and in recent times spent her days in a care home. My relative was never happy there, but stoical about her situation. I'll spare you the details but sadly she has since died. I cannot help but think that in a world with a greater understanding of how to support people living with dementia, a care and support package could have been produced to help her stay at home, where she was very happy. She had lived there since 1956. There's a lot that needs to change ... and there is Manuela in the midst of it all fighting her corner with intent to help others. Good on her!

    Peter

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  2. Wooh, Lucy, I don't think I'd dare to up and move my blog somewhere else. But then I see you've moved it to Blogger.

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