Manuela Sykes, from what I have read about her, sounds like an amazing woman. I hope that her actions in this case make a difference for others like her in the future.
Lucy Series over at The Small Places has written an amazing and moving article about this woman, and it is far better than anything that I will manage, so go and read that
Manuela was 89 and suffered from dementia. It was considered by Westminster that she could not be kept safe in her own home, so they placed her in a secure home and (very commendably) made an application to the Court of Protection for authorisation of Deprivation of Liberty (making that application allowed Manuela to be represented and to challenge that and made it a judicial decision rather than an administrative one. That was a damn fine thing to do, well done Westminster)
District Judge Eldergill decided the case, and I would like to say that it is a model judgment – I hope it blazes a trail that others will follow. (Justice Jackson decided a case on a similar rationale in 2013, a judgment I praised highly at the time)
Ms S has had a dramatic life, and the drama is not yet over.
She has played a part in many of the moral, political and ideological battles of the twentieth century. A vegetarian from an early age; a lifelong feminist and campaigner for women’s rights; a Wren in the Fleet Air Arm; a committed Christian; a political activist who stood for Parliament; a councillor on the social services committee of the local authority that now authorises her deprivation of liberty; the editor for 40 years of a trade union newspaper; a helper of homeless people and an advocate for them; and a campaigner for people with dementia, from which condition she now suffers herself.
The court is not concerned with her particular political views, whether they are left or right of centre, and nor is it concerned with her religious views. These are matters for her. Their main relevance to this court is that by nature she is a fighter, a campaigner, a person of passion. She appears always to have placed herself in the public eye, in the mainstream, rather than ‘far from the madding crowd,’ debating the issues of the day, causing, accepting and courting controversy.
In 2006, she was diagnosed with dementia and appears to have responded to that in the same forthright manner with which she has approached everything else in her life. She participated in a dementia project and campaigned for the rights of dementia sufferers, in particular older women. In December 2006, she made a living Will. Some time later, in 2011, she appointed an attorney for property and affairs, a person she trusted to act for her in accordance with guidance set out in her LPA (attorney) document.
I DECLARE THAT if at any time any of the following circumstances exist, namely:
1 I suffer from one or more of these conditions: ….
1.5 senile or pre-senile dementia (e.g. Alzheimer’s disease); ….
2 I have become unable to participate effectively in decisions about my medical care; and
3 Two independent doctors (one a consultant) are of the opinion, having examined in full my circumstances and prognosis, that any of the following apply:
3.1 there is no reasonably likelihood of substantial recovery from illness involving severe pain and distress and from which it is likely I will die in the near future; or
3.2 I am in a state of unconsciousness or coma and it is unlikely that I will regain consciousness; or
3.3 I suffer from a mental illness resulting in me having a very limited awareness of my surrounding environment and an inability to perform basic tasks and from which it is unlikely that I will recover.
THEN AND IN THOSE CIRCUMSTANCES my directions are as follows:
1 That I am not to be subjected to any medical intervention or treatment aimed at prolonging or sustaining my life;
2 That I consent to the control of physically distressing symptoms…by appropriate and aggressive palliative care even if such care is likely to have the effect of shortening my life ….
That document proved to be very important, and I hope that this case will highlight how important such documents can be in protecting your wishes – amongst other things, it ensured that Manuela’s desire that her name should be published if she ever came before the Court of Protection meant that I can name her, and gives a much greater chance that the mainstream press will follow her story.
On the issue of capacity, the Judge found that Manuela, did, as a result of her dementia lack capacity to make decisions for herself about where she should live
Effect of this dementia on MS’s capacity to make the relevant decisions
Ms S is intelligent, articulate and knowledgeable. She has no difficulties expressing herself. That her core personality is intact is clearly demonstrated by her continuing and passionate commitment to the causes to which she has dedicated her life. Her weight is healthy, physically she looks many years younger and fitter than her chronological age, she presents well and her care is good. There are, therefore, currently no signs of neglect or refusal of care.
Unfortunately, this is not the whole picture. Her short-term memory is very severely impaired. Because she is so intelligent and articulate, this may not be immediately apparent from a brief superficial exchange.
Following an examination on 2 December 2013, Dr Barker reported that her short-term memory is less than one minute. It is this inability to retain information which lies at the root of many of her recent difficulties. The consequence is that she is unable to retain, nor therefore weigh, information (highly) relevant to the decisions about the treatment, care and support she requires.
In particular, she cannot recall the circumstances and behaviour that caused others to remove her from her own home to hospital and to transfer her to residential care. Lacking this information, she does not accept that she had significant problems at home, nor therefore that she requires a significant package of care and support. Nor can she appreciate that, without additional care, it is likely that the problems will be the same as before, because the situation is the same as before. 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.
Sadly, the preponderance of the evidence requires a conclusion that MS lacks capacity to make the relevant decisions for herself. She frequently asks, ‘Why am I here’ because she cannot remember how her situation has arisen, nor therefore understand and weigh the reasonably foreseeable consequences of accepting or refusing necessary care or support.
To summarise, I accept the professional and family view that she lacks the capacity to make these decisions for herself because her dementia has affected her ability to understand, retain and weigh the relevant information. It is more than simply an unwise decision that she chooses to make, if free to do so.
I admire District Judge Eldergill immensely for being honest about the dilemma before the Court – there was no solution that would keep Manuela Skyes HAPPY AND SAFE – there was a choice to be made between the two.
Having summarised the legal framework, I must consider MS’s best interests in the context of it.
There is, of course, no solution.
In the suggested care settings the situation will be less than optimal.
None of the options canvassed with the court will provide Ms S with security, safety, liberty, happiness, an absence of suffering and an unrestricted home life. These different considerations cannot all be reconciled and promoted within a single setting, and the realisation of some of them must inevitably involve the sacrifice of others. The task is to choose which of these legitimate values and aims to compromise and which to give expression to, in her best interests.
The Judge addressed how Manuela Sykes expressed wishes fed into the best interests decision – underlining is mine – expect to see this quoted fairly often
S’s wishes and feelings are important factors to be taken into account when reaching my decision: after all, why would anyone wish someone to be cared for otherwise than in accordance with their wishes if they can be adequately cared for in accordance with their wishes?
In taking her wishes and feelings into account, I have considered the case of ITW v Z,  the degree of incapacity, the strength and consistency of her views, the likely impact of knowing that her wishes and feelings are being overridden (if my decision is contrary to her wishes), the extent to which her wishes and feelings are rational, sensible, responsible and pragmatically capable of sensible implementation, and the extent to which her wishes and feelings can properly be accommodated within the court’s overall assessment of her best interests.
I have noted the consistency of her wishes and feelings; the effect on her mental health, happiness and well-being of the continued loss of her 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.
MS is still able to appreciate and express the value of being at liberty and being allowed autonomy.  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.
Any written statements made by her when she had capacity
Ms S’s living Will and the guidance in her Lasting Power of Attorney are written statements which I have considered and taken into account. They indicate a wish to remain in her own property for as long as ‘feasible’ and in general that she prioritises quality of life over the prolongation of life (see §5).
Relevant beliefs and values
The law requires objective analysis of a subject not an object.
Ms S is the subject.
Therefore, it is her welfare in the context of her wishes, feelings, beliefs and values that is important. This is the principle of beneficence which asserts 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.
The available evidence indicates that Ms S’s relevant beliefs and values include a very strong belief in and commitment to the value of open public debate and social services for those who need them.
She has unambiguous opinions about what is right and what is wrong, and has spent much of her life airing those opinions. It seems plain that it is fundamental to her nature and purpose in life that she is free to air and promote her political and personal values through discussion, marches, rallies, newspapers, campaigning and other forms of political activity.
She has a strong will to change the world, to influence others and to draw their attention to the plight of those she believes need and deserve more care, such as the homeless and people experiencing dementia. She also has a strong desire to promote the interests of those she believes are politically disadvantaged: women as compared with men; the homeless compared to those with homes; the older and more frail compared with the younger and fitter; and, to use her term, the ‘double whammy’ disadvantage of older women.
These political and personal values have a religious element, evident from her expressed religious beliefs and attendance at church services and Quaker meetings.
One thing she seems never to have lacked is courage and a willingness to place herself at the centre of public debate and attention. She stood in two Parliamentary by-elections and campaigned to have Buckingham Palace rated. Indeed, the impression is that she relishes being at the centre of public events because it means that she is exerting influence; is being heard; is affecting the outcome of social issues important to her.
All of this is highly relevant when it comes not only to the court’s decision concerning her care package but also, and perhaps even more so, the decision whether she should remain anonymous or be identified as the person at the heart of her case. What she has done with her life indicates that she has always wanted to be ‘someone’, to have influence.
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.
On a personal level, her strong sense of self, her belief in the importance of the individual, her desire for freedom and autonomy are magnetic factors, operating at positive and negative poles by providing both the pull of freedom and the counterforce of resistance to outside care.
It is undoubtedly hyperbole to suggest that Manuela Sykes is the Rosa Parks of dementia, but what the hell – that is how I feel about her at this moment.
It is my view that it is in Ms S’s best interests to attempt a one-month trial of home-based care.
Very helpfully, at the end of the final hearing the local authority told me that if I rejected its primary case, and decided on such a trial, they would put a transitional plan in place to enable the trial to proceed.
The judgment was published, and Manuela’s name not anonymised – in accordance with what she had asked for. The Judge does make this very good observation about “secret Courts” though, and I think it has wider application
Under the Court of Protection Rules 2007, the general rule is that a hearing is to be held in private.
This reflects the personal, private, nature of the information which the court is usually considering.
That is not the same as being secretive; 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. All citizens have a right to expect that information about them will be held in confidence by their doctors and social workers, and to expect that any overriding, future, need to breach this right will go no further than necessary, and only exceptionally involve seeing it in national newspapers.
Everyone benefits from, and enjoys, this level of privacy and therefore there is a strong public interest in privacy. Not to allow an incapacitated person the same general right to privacy or confidentiality that we claim it for ourselves would be to discriminate against them because of their mental illness and vulnerability.
The one, highly important, difference is that whilst in an ideal world incapacitated people would have exactly the same right to privacy and confidentiality that the rest of us enjoy, when judges make decisions for them this brings into play the competing consideration that the public ought to know how courts of law function and administer justice: what kinds of decisions they are making, the quality of those decisions, and so forth.
While it is sometimes necessary to distinguish between ‘the public interest’ and ‘matters which the public finds interesting,’ there is a high public interest in seeing that hearings which determine the rights of incapacitated people, and their families, are fair and properly administered.
[You don’t often get cases where everyone involved comes out of it well, but this is one]
If only the courts would run legal cap test like RE:C in every case involving capacity issues. I know it might be time consuming but isn’t making the right decision worth it.
A living will is like autonomy (one who gives oneself one’s own law).
To disrespect the liberty of a person to make a choice, ignores the moral equality a human has with another human (the personal autonomy to make uncoerced choices).
The court of protection in many cases is just patronising paternal emotionalism, feed by the needy (e.g. social workers), who are emotionally dependant on the perception of these attitudes, they need the “needy” to be needy.
Many who put themselves in a position as a “guardian” in the shadow of this patronising paternal emotionalism needs the “needy” to lack capacity in order to feed their own emotional needs and status as a “guardian” in society.
The judge in this case is correct, the state is the servant to the individual and not their master or “guardian”.
I think it is an important case for that reason – it really highlights how a person who has capacity who can see that it might ebb away can take control of what may come. I hope it gets the mainstream press attention it deserves.
Like with many issues in life, the possible solutions are no good if people do not know about them,it will take time to trickle down through society, but its good to see a living will have an effect in the courts and even if the media forget about them, I am sure lawyers will see them as a source of clients and they will spread through the internet.
There are dare I say it lessons to be learnt here for the “professionals” too,which could save them from embarrassment of cases like forced c-sections, if they were to be proactive before a mother stopped taking medication etc.
Yes, a bit of pre-planning and forethought and proper discussions might avoid some of the ‘crisis’ decisions being taken.
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