Judge approves trial of home-based care for dementia campaigner

A Court of Protection judge has approved a one-month trial of home-based care for a dementia campaigner who now suffers from the illness herself.

District Judge Eldergill also took the rare step of naming the local authority involved in the case, Westminster City Council, and the campaigner, Manuela Sykes.

In Westminster City Council v Sykes [2014] EWHC B9 (COP) the 89-year-old had been deprived of her liberty at a nursing home by virtue of a standard authorisation granted by her local authority under the Mental Capacity Act 2005.

Ms Sykes had, on numerous occasions, expressed the wish to return to her central London flat, her home for more than 60 years.

She was supported by RS, her litigation friend as well as her attorney for property and affairs under a Lasting Power of Attorney signed on 12 July 2011.

Westminster had brought the case before the CoP because of the opposition to the placement and care regime.

Before the court the council set out the problems experienced by Ms Sykes in the run up to her admission to hospital and then a nursing home. It also claimed that she settled quickly at the home after outings and had never sought to discharge herself.

District Judge Eldergill highlighted three other features of the case:

  • If 24-hour care and supervision at home was a practicable alternative, which the local authority formally disputed, Ms S's means were limited. “She may well be unable to finance it herself for more than a few months. She is also single and has no children. Therefore, the options available to some older persons in terms of a partner and/or children forming a rota of free care are not available to her.”
  • The local authority could not afford or would not fund such a package of care.
  • Provided they did not act so irrationally that it constituted acting unlawfully, etc, it was for local and other public authorities — not judges — to decide how to allocate their limited resources. “Furthermore, the funds available to public authorities, and levels of taxation and public expenditure, are political decisions, that is matters for all of us, i.e. for voters not judges.”

 District Judge Eldergill said Ms Sykes had had a dramatic life, and the drama was “not yet over”.

“She has played a part in many of the moral, political and ideological battles of the twentieth century,” he said. “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 judge also described her as a “fighter, a campaigner, a person of passion”, which was of relevance to the court.

District Judge Eldergill concluded that it was in Ms Sykes’ best interests to attempt a one-month trial of home-based care. The risks of the care package breaking down identified by the council were outweighed by other reasons.

"If not now, then when? Ms S is 89 years old and her life is drawing to a close. It is her life. Several last months of freedom in one's own home at the end of one's life is worth having for many people with serious progressive illnesses, even if it comes at a cost of some distress. If a trial is not attempted now the reality is that she will never again have the opportunity to live in her own home. Her home will be sold and she will live out what remains of her life in an institution. She does not want that, it makes her sufficiently unhappy that sometimes she talks about ending things herself, and it involves depriving her of her liberty."

The judge added: "Although there is a significant risk that a home care package will 'fail', there is also a significant risk that institutional care will 'fail' in this sense (that is, produce an outcome that is less than ideal and does not resolve all significant existing concerns)."

He said if it was in her best interests to live out what remained of her life in a nursing home - and it may be - it must be on the basis that any possible viable alternative has been explored, "i.e. trialled and found not to be feasible in the sense of being practicable and more satisfactory for her".

Amongst other things, District Judge Eldergill noted Ms Sykes’ Lasting Power of Attorney in which she indicated a wish to remain in her own property for as long as ‘feasible’ and in general that she prioritised quality of life over the prolongation of life.

The judge also decided on balance that Ms Sykes could be named. "MS's personality is a critical factor," he said. "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."

The local authority has agreed to put a transitional plan in place to enable the trial to proceed.

On the structure of the trial, District Judge Eldergill said there needed to be a break clause and careful monitoring, together in the order with liberty to apply on 24 hours’ notice (or, in any genuine emergency, ex parte).

The judge said at least three critical periods needed to be planned for:

  1. The risk of the package breaking down almost immediately because Ms S felt that her paid carers were unsuitable, did not engage, rejected their 'prompting' and was in conflict with them.
  2. The situation at the end of the one-month trial period when the outcome was reviewed and the possibility arose that it was agreed or asserted that home care had been shown not to be feasible.
  3. The situation after 4-6 months if Ms S remained at home and her current savings were exhausted.

The judge said: “I do not intend to consider the possibilities beyond around six months’ time because in my view the circumstances of Ms S's situation mean that an order which seeks to produce that degree of finality is not possible today.

“Hopefully, the trial (and any continuation of it over the following months) will produce sufficient clarity one way or the other that final declarations and orders can be made largely by consent. If not then a further hearing will be required. Obviously, that is what the court is here for.”

Anne-Marie Irwin of Irwin Mitchell, who was instructed to represent Ms Sykes’ interests, said: “Manuela is firmly of the view that with the right kind of care package, she could be supported to return home safely.  

“Although the kindness of her carers was praised, Manuela was miserable at the care home, and we asked the court to consider if it is truly in her best interests to remain deprived of her liberty. The court was asked on her behalf - what is the point of being kept safe, when to do so is also making you miserable?”

Irwin added: “The judge today noted her living will, made when she had capacity, which showed that she prioritised quality of life over prolonging life. He pointed out that as an 89-year-old this may be her last chance to live in her own home – something she wished to do for as long as possible. We are confident that with specialist dementia carers Ms Sykes can greatly benefit from returning to her own home.”

Mungo Wenban-Smith of 39 Essex Street acted for Westminster. Parishil Patel, from the same set, appeared for Manuela Sykes.