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.
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.
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.