Prader-Willi Syndrome and Transparency

By Celia Kitzinger, with Brian Farmer, 21 February 2021

A young man with Prader-Willi Syndrome was at the centre of a hearing before Theis J (COP 13866679, 14th February 2022).

I can only tell you this because journalist Brian Farmer and I made submissions to the judge saying that we should be allowed to report it and she eventually agreed.

The judge had ruled in court that we were “not to identify P’s particular genetic condition“. She’d acceded to the submission of counsel for P via the Official Solicitor (Zoe Harper, Doughty Street Chambers) who said she “didn’t know” how many people had Prader-Willi Syndrome or whether it might risk people being able identify P (in combination with other permitted information such as the part of the country he lives in and how old he is). She wanted to impose a reporting restriction on the diagnosis because she was “cautious“.

I’ve observed more than 280 hearings in the Court of Protection in the last 18 months and I’ve never been in a hearing before where we weren’t allowed to report P’s diagnosis.

The judge asked for comments from Brian Farmer, the PA journalist also present in the hearing. He said: “I struggle to see how that’s an identifying feature. It says it’s a ‘rare’ condition, but a lot of people suffer from it. To say ‘a man in his late teens, in the Midlands, with this condition‘ – how will that identify him?

“Without information about how many people there are with this condition in England, or in the Midlands, or in care, it is not possible to know“, said the judge.

A representative from the Prader-Willi Syndrome Association (UK) (PWSA, UK) was in court to support the family. Like the rest of us who weren’t parties to the case, she had her camera and mike off, but she put up her electronic hand at this point (as she had done earlier to say that she wanted the local authority to liaise with PWSA, UK “because I don’t think the condition has been fully understood“). The judge noted that “there’s a hand up from the lady who comes from the relevant Association“, but “rather than take up time about that” she decided to go ahead and make the order that Prader-Willi Syndrome could not be mentioned.

And that was that.

Or it would have been, had not Brian and I voluntarily devoted several hours each to researching Prader-Willi Syndrome, establishing its prevalence (up to 2000 people in England), and considering the risk that naming P’s diagnosis might lead to jigsaw identification. That risk (and P’s Article 8 privacy rights) needs to be weighed against the public’s Article 10 rights to freedom of information – both about the decision-making process of the Court of Protection and about the apparent failings in care provision for a young person with Prader-Willi syndrome. We both thought that challenging this reporting restriction was the right thing to do.

I contacted Ruth Consterdine, the Support and Training Officer for PWSA, UK (her name was visible on the Teams call during the hearing) to let her know that we would be doing this, and to find out whether she would be able to tell us if the family was likely to object. I heard back that they had “no objection at all“.

I submitted my letter to the judge on 16th February 2022 asking for the prohibition to be lifted (see Appendix [1] below]. The Judge responded by inviting submissions from the other parties by 2.00pm on 17th February. Brian Farmer sent his (very different) letter the following day (see Appendix [2] below). We have reproduced both of our letters in full because we think they are useful examples of how to challenge unnecessary secrecy in the court. (We’ve both previously published other examples, e.g. “He’s Polish: Challenging reporting restrictions“; “Challenging reporting restrictions in the Court of Protection“).

The Official Solicitor then made a submission in response to mine which said, “in summary, having had the opportunity to give full consideration to the issues, it is accepted that the syndrome may be named in reporting on the case whilst maintaining [P]’s anonymity”. A salient fact mentioned in her submission as having influenced this decision is the previous publication of a Family Division case (H v East Sussex County Council & Ors [2009] EWCA Civ 249) to which I referred in my own submission (and which could have been easily found by anyone using the search facility on BAIILI).

I hope in future that the Official Solicitor will give full consideration to any unusual reporting restrictions in advance of the hearing, so that public money is not spent on the court making inappropriate orders which then need to be challenged, with all the cost that entails to the Official Solicitor (in reading and responding to the challenges) and the cost of judicial and court staff time in engaging with the problems this creates. It is not a prudent use of the public purse. And of course it undermines the judicial commitment to transparency that is (usually) so characteristic of the Court of Protection.

Having received submissions from me, Brian Farmer, and the Official Solicitor, the judge then varied the reporting restriction order to permit naming of P’s genetic medical condition, Prader-Willi syndrome.

What is Prader-Willi Syndrome?

There’s a great deal of information available from the Prader-Willi Syndrome Association UK, an organisation “supporting all those affected by Prader-Willi Syndrome, a rare condition causing a near-permanent state of hunger, learning & physical disabilities” (see their Twitter feed: @PWSAUK). They have a website, a regional network of peer support groups, organise training courses for professionals, staff a helpline, and have organised an upcoming one-day virtual conference for adults with Prader-Willi Syndrome on 5th March 2022. Their mission statement is: “Every person living with or affected by PWS has access to the same high level of good quality care, opportunity and support, and the people delivering care, opportunity, support and research towards a cure have the knowledge, training, resource and support to do so in order to cure the challenges of life with PWS“.

Prader-Willi Syndrome is a genetic condition. It’s not inherited, but due to “random events during the formation of egg or sperm cells, or in early fetal development” (Genetic and Rare Diseases Information Centre).

It has a wide spectrum of symptoms but the six most common behavioural features are:

  • Hyperphagia: intense persistent sensation of hunger accompanied by food preoccupations, an extreme drive to consume food, food-related behavior problems, and a lack of normal satiety
  • Temper outbursts: highly explosive episodes in which the person with PWS becomes very angry or upset in a way that seems excessive for the situation and also beyond the person’s control
  • Anxiety: excessive worry and tension often related to schedules/ routines, food planning or food security, persons/items of special interest and excessive concerns about the possibility of change
  • Obsessive compulsive behaviors: repetitive, ritualistic behaviors, collecting and hoarding items, insistence on “sameness,” need to know, ask, or tell
  • Rigidity: ardent inflexibility with certain routines, concepts, or ways of thinking; vigorous resistance to change; black and white thinking
  • Social cognition: difficulties relating to others, challenges with reciprocal social communication, recognizing others’ emotions, empathy and accurate interpretation of social cues.

Prader-Willi Syndrome is in the Rare Disease Database (i.e. it affects fewer than 1 in 2000 people).

Disability rights activist, Gill Loomes-Quinn, says: “As someone with a (different) rare genetic disease, one of the biggest additional challenges (compared with having other, more common impairments – which I also have) is the total lack of public discourse, or even interest, in a given condition (and the effect of that on access to appropriate treatment and support)“.

Commenting on the judge’s eventual decision not to ban us from mentioning Prader-Willi syndrome, Gill Loomes-Quinn says, “this is a good outcome“.

Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse – but united in purpose.

Rare Disease Day was set up and is coordinated by the European Organisation for Rare Diseases (“the voice of rare disease patients in Europe”) along with 65+ national alliance patient organisation partners. It takes place worldwide to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.

The hearing

This was one of the relatively infrequent hearings when P was in court throughout, visible on screen, and fully engaged in the court process.

While we waited for the judge, various people on screen (both counsel, and P’s Accredited Legal Representative, soon to be replaced by the Official Solicitor) greeted P, introduced themselves and reminded him of previous times they’d met. The judge, likewise, arriving a few minutes late, greeted P and checked he could see and hear her.

P has been assessed as lacking capacity to conduct proceedings, and to make decisions about his residence and care. The issue before the court is where it’s in P’s best interests to live and receive care (and the proceedings were reconstituted as s.21A so as “not to cause any interruption of the public funding“).

Until September 2021, P lived his whole life in the UK with his Aunt V. He was then temporarily placed in a residential placement, which broke down after P tried to abscond through a second floor window and also engaged in self-injurious behaviour.

At a hearing at the beginning of October 2021, the local authority made an out-of-hours application (in the Family Division) for a deprivation of liberty order. MacDonald J approved an order that P could be deprived of his liberty at Care Home A until mid-October 2021. This order was continued for another month at a hearing before Cohen J, and then a further month before Moor J.

In mid-January, Care Home A served notice on P. According to counsel representing P via the Official Solicitor, the current placement [Care Home A] is “at breaking point” with P: “they’ve had to hold a safeguarding enquiry, they’re unable to meet his needs, the police were called four times in a month due to his absconding and a need for protection“.

An alternative placement has not yet been identified.

The case is now being heard in the Court of Protection, rather than the Family Division, due to P’s age.

P wants to leave Care Home A, which is well over a hundred miles from his home. He said that he wants to return home, or to take up a specialist placement option [Care Home B] for people with Prader-Willi Syndrome. Care Home B is also geographically a long way from home, but he believes (and the two aunts in court agree) it will offer him the right kind of care and support. (My understanding is that they don’t have a vacancy at the moment.)

In the hearing, arrangements were made to instruct an independent expert as a matter of urgency, and the plan was to have another hearing in four weeks time.

Neither of the two aunts sounded pleased with what they saw as the delay this occasioned.

Before P moved out, we were told they [the current placement] knew how to deal with the Prader-Willi people. But even though they say they know how to deal with Prader-Willi, I find it not true. This is why all the problems occur now in this home. P needs a setting that has only Prader-Willi people in that home – for the simple reason that with food and behaviour they are all the same.  P would have been much better in [Care Home B] where only people like him are around“. (Aunt V)

The judge said, “it’s accepted he’s going to move from the current placement. We need to find the right placement.”

I would ask you, My Lady, to think like a mother who has spent fifteen years of her life looking after a child. You only want the best for your child. He’s very disturbed in that home. He’s affected physically and mentally. I did not know this would happen. I have said to Ms Harper [Counsel for P] I will take him to my home until the right place is available. I am very concerned about his physical and mental health. I have raised him for 15 years. They are worried about the pros and cons of different placements. I know who P is. I can deal with P. No family is perfect. P has a condition, and I want to help him. He wants to be independent. He sees his brothers going out. He just wants to be normal, like them. He doesn’t want to ‘abscond’. He just wants to be free to go out.” (Aunt V)

And Aunt W expressed similar views:

It is easier to prevent something from happening than to repair the damage afterwards. P is affectionate, lively, smart, talkative. He likes a social life. His all-time ambition is to be a vet. He wants to be treated fairly and equally to others. His behaviour can be very challenging at times – this is why he was taken away from us. But we were under the impression that he would be put in the right place: a Prader-Willi home, where there would be trained professionals, able to deal with him and to meet his needs. What I’ve noticed from my regular calls with P is he’s now very depressed, doing nothing at all, not going out. They say he couldn’t go out because he was upset. He was upset from doing nothing. He has his challenges. They are typical of a Prader-Willi Syndrome person. We don’t know why he was even put in [Care Home A] when all that could have been avoided. He’s put on a lot of weight. The diet and food intake is not controlled. There are no facilities for working out. He’s with a guard all the time. When he’s taken out for swimming or gym, he’s always with a guard.” (Aunt W)

The judge thanked Aunt W for her update which, she said, “will have been heard by everyone responsible for his care“. Her role as judge now, she said, was “to get all the evidence together to make the relevant decision“.

Aunt V added that P now weighs 89 kilos. “He’s never been that heavy. He was 76 kilos and they were warning him he was on the edge of becoming diabetic. I’ve worked very hard to keep his weight down. 89 kilos is really huge.”

At this point P’s electronic hand was raised so the judge asked him to speak. He said: “To be honest, I’m on the same page as my aunties. Since I’ve come into social care, we haven’t had any interest in going to look at places. This place in [City, Care Home B], we knew Care Home B was the best place for me. I feel like being here for four months- This was for me to have a break from my Mum [I think this means Aunt V] and better myself as a person, but I don’t feel like there’s been any help. I feel like I’ve wasted my time in social care, because there’s been no help. There’s been no help at all“.

Thank you,” said the judge. “What you’ve said has been heard loud and clear. My role is to gather information so the court can make a decision about the next stage for your care. You expressed yourself very clearly. Thank you very much.”

The current care home has agreed that P may continue to Iive there until a new placement is available for him. The lawyers will now get expert evidence from a doctor about P’s needs, and explore other possible placements. The next hearing is listed for 10.30am on 11th March 2022 (another directions hearing) and then a final hearing on 28th March 2022.

Celia Kitzinger is co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project. She tweets @KitzingerCelia

APPENDICES:

SUBMISSIONS CONCERNING REPORTING RESTRICTIONS

1. Submission from Celia Kitzinger (Member of the Public)

Dear Judge

I was a public observer in the hearing yesterday concerning the young man with Prader-Willi Syndrome who was at the centre of a s.21A case.

I have received the transparency order which makes clear that the hearing was in public and may be reported subject to an injunction preventing publication of any material or information that identifies or is likely to identify that P is the subject of the proceedings, or that any person is a member of the family of the subject of the proceedings, and any material or information that identifies or is likely to identify where any person listed above lives, or is being cared for, or their contact details.

In discussion with Brian Farmer, the PA journalist present in the hearing, you ordered that it could be reported that P and his family live in the London area and that he is currently residing in a placement in the Midlands.  

You also ordered that the name of P’s genetic disorder, Prader-Willi Syndrome, could not be published.  I would like to ask you to reconsider, and to make it possible for us to publish the information that P has Prader-Willi Syndrome.   

I am making this request after having consulted with Ruth Consterdine, the Support and Training Officer for the Prader-Willi Syndrome Association.  She contacted P’s aunt, Miss V on my behalf and assures me that Miss V has no objections to me making this application.  

My reasons for making this application are as follows:

1.  No evidence was provided in court that reporting that P has Prader-Willi Syndrome risks identifying him – either alone or as part of jigsaw identification with other permitted information.

My understanding of open justice is that it is normally necessary (in a public hearing) for a case to be made as to why information should be withheld from publication, and not that it should be necessary for members of the public to have to make a case as to why information should be available for publication.   In the course of this hearing there were vague and unsubstantiated claims to the effect that it “might” lead to P’s identification, but counsel did not give any evidence to support this, and said they did not know how many people have Prader-Willi Syndrome.  This 2020 Court of Appeal decision (2020] EWCA Civ 580) held that the starting point in civil cases is open justice, and any derogations must be justified as necessary by the requesting party. It should not therefore be necessary for me to provide evidence to persuade you that a piece of information will NOT risk revealing P’s identity in the absence of evidence that it might. However, I have attempted to do so below.

2.  Expert opinion from the Prader-Willi Syndrome Association is that reporting that P has Prader-Willi Syndrome is unlikely to identify him

Ruth Consterdine tells me: “I don’t think there is much danger of the young man being identified, as I understand the other geographical references are ‘the London area’ and ‘the Midlands’. I had my hand raised at the point of discussion, as although it is a rare genetic condition with no cure, there are approximately 2,000 people from birth to 70 years living with it.” (Email correspondence, 14th February 2022)


3. Other published judgments have identified P (a protected party) or children (whose identity is likewise protected) as having Prader-Willi Syndrome – and there is no evidence that this has led to the identification of the person concerned.

There is at least one other published judgment in the Court of Protection concerning a person with Prader-Willi Syndrome (he’s anonymised as FX) which names the diagnosis (see Re FX [2017] EWCOP 36 (19 December 2017)).  There is also at least one published judgment from the Court of Appeal in which a child (whose identity is likewise protected) is specifically referred to as having Prader-Willi syndrome (see H v East Sussex County Council & Ors [2009] EWCA Civ 249 (31 March 2009) (concerning a 12-year old-girl with Prader-Willi Syndrome). There is no evidence that these people were identified following publication of these judgments.

4. The information that P has Prader-Willi Syndrome is integral to reporting this case accurately – and the information that P has a learning disability and a problem with weight gain is likely to lead those with knowledge in this area to identify P as having Prader-Willi Syndrome even if I do not name this diagnosis.

P needs specialist treatment because of Prader-Willi Syndrome – and that was a crucial part of the hearing. His family want him to be able to move to somewhere he can get specialist treatment which (Aunt V says) means  “a setting that has only Prader-Willi people in that home – for the simple reason that with food and behaviour they are all the same.  P would have been much better in [Care Home B] where only people like him are around“. Aunt W said “He has his challenges. They are typical of a Prader-Willi Syndrome person. We don’t know why he was even put in [Care Home A] when all that could have been avoided. He’s put on a lot of weight. The diet and food intake is not controlled. There are no facilities for working out. He’s with a guard all the time. When he’s taken out for swimming or gym, he’s always with a guard“. Aunt V added her specific concern that his weight has increased at the current placement (“he’s 89 kilos, he’s never been that heavy“) and is concerned about the risk of diabetes.  The diagnosis of Prader-Willi Syndrome is integral to an accurate understanding of what the family see as the problem here.  Moreover, if I report information such as that above, the combination of P’s learning disability and his problem with weight gain is likely to lead people with some knowledge in this area to identify P as having Prader-Willi Syndrome in any event. (See for example this NHS website on “Managing weight with a learning disability“, which names two relevant diagnoses: Downs Syndrome and Prader-Willi Syndrome.)

5.  Public interest in diagnosis as a route to social and political action

It’s very unusual (I’ve never seen it before) not to be able to name the diagnosis of someone in the Court of Protection (especially given that determining a lack of capacity requires a disturbance or impairment in the functioning of mind or brain). Diagnostic categories matter because people organise around them.  Campaigns for better understanding of a condition, protests against poor treatment, support events for the people affected and their families, fundraising – all of these coalesce around specified diagnoses. These are exactly the activities apparent on the Prader-Willi Syndrome Association Website.  

In sum, I think that the reporting restriction currently in place, which prevents us from saying that P has Prader-Willi Syndrome, is unnecessarily wide. It curtails the public’s Article 10 freedom of information rights, without any evidence that this is justified to preserve P’s Article 8 privacy rights. The public has a legitimate interest in learning about the problems for people with Prader-Willi Syndrome,  and significant parts of the courtroom interaction dealt specifically with concerns relating to people with this diagnosis, such that omitting reference to the diagnosis makes that interaction either opaque (for those who don’t know about the syndrome) or (for those with the relevant knowledge) reveals what P’s diagnosis is likely to be in any event.  Other published court judgments have said that people (whose identities are otherwise protected) have Prader-Willi Syndrome.  We should be able to publish that information too. 

The prohibition on naming Prader-Willi syndrome has had a chilling effect on open justice.  There is a draft blog post about the hearing which I am not able to publish unless or until this reporting restriction is lifted.  I would also like to add that the time and effort it takes a member of the public, without legal training, to challenge reporting restrictions like these – made in the absence of any evidence as to their necessity – is an onerous addition to the civic responsibility we exercise as we seek to support the judicial commitment to transparency.

Thank you for considering this application.

Celia Kitzinger

16.02.2022

2. Submission from Brian Farmer (Journalist)

Dear Judge,

I’d support Prof Kitzinger’s arguments.

I also want to be able to tell the public that P has Prader-Willi Syndrome.

I’d make the following points.

1:    I think the key issue, when you are balancing P’s Article 8 rights against my Article 10 rights, relates to jigsaw identification. (I’m not asking to name P, or his relatives, or give an exact age or any detailed address.)

2:    I want to report the Court of Protection proceedings and give the public five pieces of personal information about P:

a: He’s a man in his late teens

b: His family home is in the London area

c: He’s currently living in a facility in the Midlands

d: The applicant is the London Borough of Ealing

e: He has Prader-Willi Syndrome.

3:   I think you should consider three questions:

a: Will providing those five pieces of information create an information jigsaw which will enable anyone to identify P?

b: If it will, who would be able to work out his identity?

c: Is there a risk that anyone who worked out his identity would harm him?

4:    I haven’t seen any evidence, but logically the answer to question 3a must be ‘yes’. Providing those pieces of information will no doubt enable some people to identify P: relatives, family friends, neighbours, medical staff/carers. But won’t relatives etc already know P and know that he has Prader-Willi Syndrome, and probably know that he is involved in Court of Protection proceedings – certainly, court proceedings of some kind. My understanding is that P is [in his late teens], has had Prader-Willi Syndrome since birth and has spent most of his life living in London with an aunt. Those around him must know about him.

5:   Is there any evidence that people in that circle of relatives etc have harmed P, or are likely to harm him? Is there any evidence that P will recognise himself in any report and suffer harm as a result? (These are questions I can’t answer). Presumably reporting won’t put him at risk of bullying or teasing at the facility in the Midlands where he lives at present.

6:   I’d also make the point that people in that circle of relatives etc will recognise him even if we don’t say he has Prader-Willi Syndrome, but instead use a phrase like “rare condition”. If there’s a risk of teasing, for example, the risk will exist in any event. And any report would have to say that he had some kind of condition.

7:     Some people will always be able to recognise a P in any report of any Court of Protection hearing: if judges decided that a report could not identify a P to anyone, we’d never be able to report anything. (Likewise, some people will always recognise the child in a family court report).

8:   However, I’d suggest that it would be extraordinarily difficult for anyone outside that circle of relatives etc to put together the five pieces of information and work out P’s identity. How could the man or woman on the bus, even the Ealing bus, complete that jigsaw? There are jigsaws and jigsaws. If I named P’s mother, or gave his address, a child could complete the jigsaw. But who could complete a jigsaw armed only with the five pieces of information outlined in paragraph 2? That’s more than a jigsaw; it’s a Watergate investigation. The website https://www.mangen.co.uk/wp-content/uploads/2018/07/Prader-Willi.pdf   says about 1 in every 15,000 births is affected by Prader-Willi Syndrome. The website https://directory.londoncouncils.gov.uk/directory/ealing/ says Ealing has a population of more than 340,000. But, regardless of how many people live in Ealing or how many of those have Prader-Willi Syndrome, who could solve the puzzle? Sherlock and Mycroft Holmes combined? Bob Woodward and Carl Bernstein? MI5? Why would anyone even try?  In the real world, won’t the bus passenger have other things on his or her mind: What’s for tea? Has she got time to get the gym? Is World War III about to start? Has she got Covid? Why is his brother ringing him again?! I’d say it’s absurd to think that the average person in Ealing would even contemplate attempting to complete the identity jigsaw after reading about P in the Ealing Daily Beast or in Prof Kitzinger’s blog, let alone harm him.

9:   I’d argue that, in essence, the current restriction is preventing me from telling some people what they already know.

10:   What are the consequences if the media can’t tell people that P has Prader-Willi Syndrome? I’d say that would constitute a serious infringement of my right to impart information and the public’s right to receive information.

11:  If journalists can’t refer to Prader-Willi Syndrome, there can be no debate about the case and its implications for people with Prader-Willi Syndrome; and there can be no contribution from any Prader-Willi Syndrome organisation or society; and these public Court of Protection proceedings won’t be transparent.

12:   Shouldn’t everyone who has a relative with Prader-Willi Syndrome know about the case? They might want to raise the same kind of concerns that P’s relatives have raised. Shouldn’t social services staff from other councils know about the case? They might have a suggestion for a placement.  Shouldn’t other lawyers and other Court of Protection judges know about the case?

13:   If you decide lessons about the care of people with Prader-Willi Syndrome should be learned, they can’t be learned if no-one can mention Prader-Willi Syndrome.

14:   Even members of Ealing Council won’t be able to debate the council’s approach to people with Prader-Willi Syndrome in the light of any ruling you give, because they won’t know that the case is about someone with Prader-Willi Syndrome.

15:    Mr Angry of Ealing won’t be able write to the Ealing Daily Beast and demand a better approach to Prader-Willi Syndrome from the council, or the Government.

16:   Isn’t public debate about conditions like Prader-Willi Syndrome in the public interest? Isn’t public debate about the funding of care for people with Prader-Willi Syndrome, and availability of placements, in the public interest? Isn’t public debate about the difficult issues Court of Protection judges have to grapple with, when dealing with conditions like Prader-Willi Syndrome, in the public interest? (I think I can answer those questions: my answers are yes, yes, and yes).

17:  I’d argue that the balance clearly falls on the side of Article 10 and that the restriction preventing the mention of Prader-Willi Syndrome should be lifted.

(If I can help with anything else, or answer any questions, just let me know. And thanks for considering this so promptly. Much appreciated).

Brian

Brian Farmer, Reporter, Press Association

17.02.2022

One thought on “Prader-Willi Syndrome and Transparency

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