A home not a hospital: Service delivery goals for PH

By Eleanor Tallon, 9th February 2022

My experience of this hearing (COP 1354439T) on 7th February 2022 could not be more different from my previous attempts to observe a public Court of Protection hearing (which I blogged earlier).

Not only was it straightforward to gain access to the hearing itself, but also I was able to observe a clear and compelling exemplar of the  functions and influence of the Court of Protection and see  how legal scrutiny can accelerate and steer the delivery of services to its optimum.

The hearing was about Mr PH.  The ‘cliff-hanger’ ending of the last blog post about this case (from the hearing a few days earlier) was that arrangements had been made for PH to be taken, as he requested, to view a care setting he could move into. If he liked it, he would hopefully decide to resume taking nutrition – after having refused it for the previous 10 days.  So I wanted to know whether the visit had been successful.  Had he liked the property? Was he accepting food again?

Background

PH is a 41-year-old male affected by a brain injury (acquired after a fit). He has ‘emotionally unstable personality disorder’ and several complex physical conditions. 

I have keenly followed PH’s journey over the course of the preceding months by reading several (very insightful) blogs written for the Open Justice Court of Protection Project: in reverse date order: “A ‘secret’ hearing on life-sustaining treatment”;  “Capacity to refuse intensive care”, “When academic theory becomes reality” and “Delays in finding an acquired brain injury placement”.

PH has been living in a side room on a hospital ward for over 18 months, although (with the exception of a couple of acute medical incidents) he has been ready for discharge throughout. Court applications were initially focused on finding him a suitable placement outside of hospital, in rehabilitation or other care settings, though this has been amidst a difficult landscape of resource constraints and the impact of COVID. Moreover, various emergencies have intervened and preoccupied the court.

Over this time, several decisions have been needed about PH’s  care and treatment. For some of these decisions, PH was assessed as lacking capacity, and best interests decisions were taken. 

For other decisions (such as the decision to refuse to go to the Intensive Care Unit), PH was deemed by Mr Justice Hayden to have the capacity – and PH’s capacitous decisions have been respected – thus eloquently demonstrating principle 5 of the Mental Capacity Act 2005; that a person shouldn’t be seen as lacking capacity simply because their decision appears to be unwise.

Mr Justice Hayden has made very public criticism of the Health Board responsible for PH’s care because of the lack appropriate rehabilitation support and because PH has remained in unsuitable accommodation, on a hospital ward.  The effect of this seems to have been that meetings were set up, and the issues escalated in a more timely fashion. 

In last week’s hearing, the Health Board presented a concrete interim plan: a bespoke care placement in a purpose-built house at the edge of a village. The house more closely resemble a ‘home’, in that PH will have his own private living space complete with a bedroom, kitchen, lounge and bathroom all upstairs, with 2 bedrooms (for ‘live- in’ carers) and an office downstairs (it sounds similar to a supported living ‘home’, though presumably would still be classed as a residential home in terms of the CQC registration). 

Today we learnt that PH had very recently visited the home and he says he likes it.

The proposed placement is envisaged to last a maximum of 6 months, and is located near to PH’s home town with options for visits to family and places of interests.

The long-term plan is for PH to return to live in the community, with his own tenancy (ideally in his home town) having regained some self-care skills in the interim (e.g. “attempts to improve his manual dexterity – impaired by brain damage –  so that he can meet some of his own care needs”).

This seems to reflect Mr Justice Hayden’s words back in October when he stated he felt “considerable optimism that his needs would be better met in future”. The fruition of a better outcome (albeit short term) seems to have been due to enhanced proactivity from the Health Board in identifying suitable resources, as well as an alternative lead psychiatrist to treat PH. 

Could it be there was more robust action due to media coverage and the spotlighted glare of accountability which follows high profile court proceedings? In any event, the progress was welcomed by all.

The hearing on 7th February 2022 before Mr Justice Hayden

The two barristers in court for this hearing were Ms Victoria Butler-Cole (as counsel for PH via his litigation friend the Official Solicitor) and  Mr Roger Hillman (counsel for the Health Board). Mr Hillman was asked to provide a summary and update of events so far.

Judge: We had a busy and stressful week last week: it is helpful to have that update. And we have members of the public on the platform who would like to know what happened.

Hillman: Your Lordship will recall that an urgent treatment application was applied for on 31st January and we came back again at the beginning of February.  The reason for the urgent application was because PH had decided to refuse to allow himself to be fed.

Mr Justice Hayden intervened at this point in response to counsel having used initials (rather than PH’s full name)  and instructed that ‘in this court we call him Mr H (full name used).”  He reminded everyone that the Transparency Order prevents use of his full name in any publication about the case, and that means that his name can be used in court without risk of compromising his privacy.

From this point on, I felt a sense of the highly respectful, professional value base with which Mr Justice Hayden conducts himself in relation to others. I admire his intervention. I find it so depersonalising, for example when individuals are referred to simply as ‘the husband’ or ‘the daughter’, and I’m sure that Mr Justice Hayden is expressing the same value base when he clarifies how PH is to be referred to in this hearing.

Hillman: Mr H decided to refuse to allow himself to be fed (he is PEJ fed) for a period of 9 days. He became very emaciated and lacking in energy due to a sustained period of fasting. He has a background of occasionally refusing to allow himself to be fed and making a stand if he is unhappy about what is being proposed. He is in the circumstances of a man with very little control, trying to draw attention to the fact that he’s unhappy about a problem. By day 10 the Board became very worried.

Judge: Mr Hillman, denial of nutrition as an exercise of personal autonomy is part of the history of this case.  But this time the motivation was different. (PH) wasn’t trying to achieve anything, he had simply ‘run out of steam’, lost his will,  having lost a close friend in a road traffic accident.

Mr Hillman corrected himself in light of the judge’s observation. He went on to clarify that at times PH  took stands and at that stage PH had said he did not want to die and that he was unhappy and was making it clear that he did not want to go to the placement that was proposed for him, a rehabilitation unit.

Judge: To place this in context, there is a strong body of professional belief that the arrangements [in the proposed rehabilitation unit]  fell considerably short of what was needed

Hillman:  We thought something rather good had been put together, with therapies that would meet his needs.

Judge: That wasn’t intended as a criticism. I don’t doubt the energy or sincerity of the effort but nonetheless it fell far short of the ideal  and (PH’s) resistance to it is not entirely unreasonable.

Hillman: The desire of all staff is to discharge him from the surgical ward where he’s now been for a year and a half and not to have him remain there on an ongoing basis, with the risk of infections.  The general wish was to have a step-down scheme, first at [Rehab Placement] with therapies provided, and  then in due course a move thereafter to a  community placement in his home town. On the 31st January Your Lordship strongly pressed (the Health Board) to revisit the options available and examine alternatives to [Rehab Placement] given that PH was so opposed to it. There were two interdisciplinary meetings on Tuesday [i.e. the day after the hearing on 31st January] following that regarding accommodation. On 2nd February, the Court was told that the Health Board had identified a placement for up to a maximum of 6 months –  not a hospital in the ordinary sense  but a residential home, a four-bedroom house which is suitable in terms of the lay out and his needs regarding treatment and care. Accordingly, the Health Board proposed that if it could be agreed and if PH were happy to move there and receive 24-hour care – there will be a full team and care provided –  he would have dignity and privacy akin to living in a private home.

Mr Hillman went on to describe the living arrangements and how staff could be ‘out of his way’ and the judge interposed, “giving this man his first  opportunity for privacy for a year and a half”.

Counsel for the Health Board recounted how PH went to see the premises in person (following the s.48 order made by the court) – despite some reluctance initially from the Health Board due to the identified risks to his health after not eating for a period of 10 days, and being extremely emaciated and tired. There was a risk mitigation plan in place; ‘special care’, a wheelchair, and ambulance transport was arranged. 

Hillman: It was agreed by Your Lordship that it was in (PH’s) best interests to see it.

Judge: Put like that it sounds like rather a reckless plan approved by me, but the reality is (PH) was dying. That has to be balanced with the paucity of the alternatives.

Hillman: The balance of risks dictated that he was approved to see the premises. He was taken in a wheelchair by the psychiatric nurse and she prepared a report for Your Lordship.

Mr Justice Hayden then enquired whether Nurse D was present at the hearing. At this point both Nurse D and PH appeared together on screen (turning their camera on after having it switched off). It was reassuring to see that PH seemed bright and alert and seemed to be intently following the discourse.

Nurse D then confirmed that PH had taken a feed following his visit to the care setting – and that he had actually agreed to have a feed prior to the visit but he did not want his stoma to leak during the ambulance journey, so had decided to wait for his feed until his return from the viewing.

At this point, it was announced by Mr Hillman that PH was in full agreement with the plan. 

Hillman: (PH) was pleased to tell everyone that he was happy with the house. The important thing is it felt like a house – it’s not like a hospital and more like a home. That’s what he told everybody after viewing the premises on Thursday, and after that he continued to go ahead with the refeeding programme, which has continued to date, I’m pleased to say.

Mr Hillman explained that a memorandum would be drawn up on what the Health Board are going to provide and this will be in simple language so that PH can understand. A care plan and transition plan will  be confirmed by way of an advocates meeting on 14th February with a view for the move to take place on 25th February or thereabouts.

It was reiterated this was, in essence, a half-way house pending a permanent home nearer to or in his home town. It was discussed that the council (of his home town) would also be involved and would need to provide an update at the end of March as to progress made in relation to obtaining a tenancy for PH and what part they are taking in working with the health board to meet his health and social care needs.

Reflections on Mr Justice Hayden

Mr Justice Hayden executes his role as judge flawlessly, and further to this he serves as a role model for how practitioners should approach their work within services for people. 

There is a very vivid imprint of person-centred practice. He has clearly built rapport through his direct engagement with PH, and he made comments which reveal this. For example, Mr Justice Hayden alluded to PH’s wish to get ‘a Mohican haircut’.  He also playfully remarked, after learning that it had been PH’s birthday a few days earlier, that PH is ‘looking good for 41’ (and PH responded with a smile and a self-deprecating shake of his head ).

Furthermore, Mr Justice Hayden’s compassionate closing statement directed towards PH, almost moved me to tears. It came across as so authentic and empathetic.

Judge: Mr H, if all goes well this may be the last time we meet. You’ve  made a very significant impression upon me. I hope it won’t come as a surprise to you that when I was told that you’d started to take nutrition again, I couldn’t have been more delighted.  In a challenging week,  it was a real ray of sunshine and I was hugely pleased to hear it. There may be a slightly easier period coming up in terms of the pandemic and better weather, and moving to the new house and re-emergence with your family. So 2022 could be a good year for you, I hope that it is. If I don’t see you again, I wish you the best for the future and for (your partner) who has been a great support for you, and I’m sure will continue to be. So from me, the very best of luck for the future. 

PH: (Gives a thumbs up and his facial expression appears sanguine)

Judge: I also want to thank Nurse D for playing an invaluable part in this case. And a debt of gratitude is owed to Dr R for his discrete and major personal input. I’m extremely grateful. PH turned a corner last week and Dr R and Nurse D were very much  instrumental in that. 

Nurse D: Thank you, My Lord.

Dr R: Thank you, My Lord.

Judge: Thank you all very much and good luck.

Reflections from the perspective of a Best Interests Assessor

As a Best Interests Assessor (within the remit of Deprivation of Liberty Safeguards), I too have followed cases over prolonged periods of time. 

These have included  s 21A appeals, and also cases where a ‘part 8’ review is required (which is when an unplanned reassessment of the DOLS authorisation is needed due to major change such as a significant increase in restrictions). There is also case continuity in situations where I have recommended that specific conditions are added to the authorisation, which have been approved by the supervisory body (the local authority) as a requirement for the care provider to meet, and I have needed to monitor these conditions repeatedly.  

I can certainly relate to situations in which I have developed empathy and felt frustrations for the individual I have assessed, especially when they are faced with a lack of alternative options (due to limited resources). 

Clearly Mr Justice Hayden has much more persuasive power than a Best Interests Assessor, but I can reflect on how having some level of oversight from a professional who is somewhat independent, and who can initiate communication with separate bodies (i.e. care home management, local authority, health commissioning) can be pivotal in ‘making things happen’ for P, that wouldn’t have necessarily happened without such intervention.

This is why I believe that the Court of Protection is so vital in promoting and protecting the rights of those who cannot always get their voices heard.

Ultimately, every person is an individual with their own story, their own belief system and their own balance sheet as to what is in their best interests. Yet we have a system where often outcomes depend on what services / funds are available to a person, rather than what would actually be best for them. In deciding best interests, we should always be focused on what they want (within a reachable distance), and balance that with a holistic assessment of their strengths and the challenges they face.

PH seems to be a spirited man, who values his autonomy so vehemently that he was almost willing to give up on life itself, rather than live a life without having any control over what was happening to him.

It seems that he has had an arduous and abhorrent experience within hospital (and possibly other institutions of care), and his clear wish is to live in his own domain and be sovereign over it; to have his own privacy and to guard his freedom as far as possible.

Surely this must be what many of us would fight for, if it were taken away from us? Particularly as there is a consensus that these are basic human rights (the rights to liberty and privacy are ratified under Article 5 and Article 8 of ECHR, which is the foundation for the legal framework of the Deprivation of Liberty Safeguards).

Dr Lucy Series reflects (here) that the experience of living in an institution can be crushing to a person’s sense of autonomy and self-identity. How would we feel if we were faced with a plethora of rules and regulations over all our daily routines, and there was an omnipresent authority which influenced every part of our lives, from goals we should achieve down to how our ‘home’ is decorated.

With his solid strength of will (and the impeccable governance of Mr Justice Hayden), PH was able to overcome some of the barriers faced by many people who find themselves in health or social care institutions, and there is an optimistic ending to this chapter.

However this is not typical (in my experience)  of the majority of cases, and it seems there is no easy answer within the climate of austerity and scarcity of provision, particularly in relation to specialist mental health provision(see Oliver Lewis’ blog here). 

I am hopeful that the actions taken in this case (as in others) builds on the recognised need to push forward the agenda to have bespoke person-centred care and to facilitate a person’s wishes as much as possible, regardless of whether or not they have capacity to make their own decisions about residence and care.

Eleanor Tallon is a Best Interests Assessor and Specialist Practitioner in MCA and DOLS with a background in Social Work.  She tweets @Eleanor_Tallon

Photo by Evan Smogor on Unsplash

2 thoughts on “A home not a hospital: Service delivery goals for PH

  1. Reblogged this on Residential Forum and commented:
    On 2nd February, the Court was told that the Health Board had identified a placement for up to a maximum of 6 months – not a hospital in the ordinary sense but a residential home, a four-bedroom house which is suitable in terms of the lay out and his needs regarding treatment and care.

    Like

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