Delay in finding a suitable placement for a young adult with Prader-Willi syndrome

By Aura Mackintosh Bamber, 22 February 2022

For any child’s family, a diagnosis of Prader-Willi Syndrome brings with it a number of responsibilities and worries that are involved in properly caring for and managing this complex disorder. 

These worries are only exacerbated when a decision is made to deprive that child of their liberty in the name of them receiving, what should be, the appropriate care.

In the case in question (COP 13866679, heard before Theis J on Monday 14 February 2022, also blogged about previously here), the individual (P) had been deprived of his liberty via orders in the Family Division since September 2021 and had been placed in a care home more than 100 miles from his home since October 2021.  

There have been problems at the care home which (it seems agreed) is not able to provide the appropriate specialist care for him – and I found it was rated “Overall, requires improvement” by the Care Quality Commission.

Having acknowledged that they are unable to keep him safe, P now faced potential eviction from his current placement. 

Whilst the principal issue that brought the case to court was where the appropriate placement would now be, what was really in issue for the young man was whether he would finally be able to go somewhere that he felt comfortable:  somewhere that he hoped would be close to his family in the London area, rather than isolated, miles away in the Midlands, and somewhere where he can get the help he needs.  

What quickly became clear from his family’s testimonies in this hearing was that, in their eyes, where he had been sent had in no way been appropriate for responding to his disorder. 

Prader-Willi Syndrome is a rare genetic condition. (More information is available from the Prader-Willi Syndrome Association.) It requires expert care in order to deal with its specific effects such as excessive appetite, low muscle tone and learning difficulties. As a result of the Care Home’s apparent lack of requisite expertise, proper diet management and encouragement to exercise, the young man had gained considerable weight and was as a result at a greater risk of developing diabetes. 

After some discussion, and welcome contributions from both P and his family, the case was reconvened for consideration in 4 weeks time when up-to-date information could be compiled, including GP records, psychological analysis and behaviour support plans. 

In the meantime, despite an offer from P’s aunt to have him back at home until a suitable placement can be found, the judge ordered that he would stay in the Care Home.

After giving a judgment if formal legal language, the judge explained to P’s aunt (who’d brought him up since he was 3 years old – at one point he called her “Mum” and she sometimes refers to him as her “son”) that the main outcome of this hearing was that she’d made an order “to require the local authority to set out its evidence in relation to various matters that you and others have raised about what the plans are for P to leave the current placement and what the options are – whether to come back to stay with you or what the other options are”.

This was clearly undesirable from his aunt’s perspective:

Aunt:  So, do we have to wait for two weeks. So, P will still have to stay there?

Judge: Yes. The short answer is yes, because it’s important that everyone has the best information. The matter will come back for a hearing on 11^th March.  I know that seems like a long time for you, and for P, but it’s important that all of the relevant information is gathered.

Aunt: I am just thinking about P’s well-being – and I am truly worried about my son. He has had four months there and has suffered a lot. The way they treat him is different to what they say. I am worried about his mental and physical health.

Judge: P now has a very experienced team in place, and they will support him^[1].

At this point P also intervened.

P: Is there no possible way we can sort out something else? I mean, I have been here for 3 or 4 months, and I don’t think I’ve benefitted. I don’t know what benefits I’ve had from staying here. Really truly it’s done nothing but give me distress.

Judge: P, I absolutely understand your frustration and wanting to move things on as fast as you can. But you’ve got people in place now, with your solicitor, your barrister, the Official Solicitor, assisting you, and if they think the matter should come back to court at a sooner time than I’ve set out, or circumstances change, they will talk to you about that.  I understand how frustrating it is for you.

There was a representative from the Prader-Willi Syndrome Association [PWSA] in court.  She’d been supporting the family – and she’d intervened earlier in the hearing to ask for the local authority to liaise with the PWSA “because I don’t think the condition has been fully understood”. 

P’s aunt now asked for her to be allowed to address the court, saying that “we tried for weeks and weeks to communicate with the local authority and got no reply”. 

The judge did not appear inclined to hear from the PWSA representative:

Judge: The order I’m making directs the local authority to liaise with the PWSA.

Aunt: Well, I hope they do. Because the previous judge did that, but the local authority didn’t bother to pick up the phone, or make emails back.  I hope they do, because this is my son’s life.

I found the delay in finding a new placement for P to be quite troubling considering that P had repeatedly voiced his distress at being forced to stay in his current placement, and his unequivocal desire to leave. 

Both family members also voiced their very genuine concern as to the impact on P’s mental and physical health being forced to stay at where he is. They also explained that many of his behavioural issues, such as absconding, were fuelled by his condition not being properly understood or managed there. Therefore, in their opinion, his placement there was putting him in very real danger.

However, despite both his family’s concern and P’s express wishes, the possibility of him returning to his aunt’s house in the interim period, before a new placement is found, was not discussed. 

This was my first experience observing in the Court of Protection, and having had some reservations about how deeming a person to lack capacity to make decisions for themselves allows decisions to be made against a person’s wishes, I was glad to see P being given the opportunity to be so directly involved. 

I was also touched by Mrs Justice Theis being sensitive to both P and the family’s perspectives, and giving positive feedback to P for his clear and coherent expression of his desires for the future. She engaged well with P throughout the hearing – at one point explaining to him how to raise and lower his electronic hand (“there’s a little face with a hand on it, so you just click on that. There you are! Well done!) and at another point explaining to P that there would be a short break in the hearing and it would resume at 1.50pm: “Cool!”said P. “Well, I’m glad it’s ‘cool’”, said the judge.  “That’s a first for me”.  

I don’t know the circumstances that led to P being taken from his family in the first place. Perhaps returning him home would make him unsafe. But, in the absence of knowing that, and despite the friendly engagement of the judge with P, it felt to me that neither P’s wish to return home, nor his family’s wishes, were accorded enough weight, especially in light of the harm caused to P’s mental and physical well-being while he remains in a care home that is clearly wholly unsuitable and cannot meet his needs.

I hope suitable specialist care options are on offer for P at the next hearing, on 11^th March 2022, and that arrangements for his transfer will be made as soon as possible.

Aura Mackintosh Bamber is a trainee barrister and Inner Temple Scholar.  She completed a Masters with a focus on Medical Law and Ethics in 2021 following on from her undergraduate degree in Law with French and French Law at the University of Nottingham. She tweets @AuraBamber

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^[1] Direct quotations from the hearing are as accurate as I could make them, given that we are not allowed to audio-record hearings.  They are  based on checking my own notes about what was said against the notes (kindly shared with me) made by Claire Martin and Celia Kitzinger, both very experienced observers who also observed this hearing. Our notes were fairly consistent (remarkably so in places) but with some minor differences which means that the extracts I quote are unlikely to be 100% verbatim.

Photo by Alexander Sinn on Unsplash