Is a kidney transplant in his best interests?

By Bonnie Venter, 1st-4th March 2022

UPDATE: The judgment in this case is now published: Manchester University NHS Foundation Trust v WV [2022] EWCOP 9 (08 March 2022)

I’m watching a four-day Court of Protection hearing centred around the legal question of whether a kidney transplant is in the best interest of William, a 17-year -old with a rare kidney condition. The hearing (Case No. 13866627) concerning started just after 14:00 on 28th February 2022.

To quickly get up to speed with the background of the case you can read my introductory post here. You can also have a look at the brilliant live update tweets from George Julian (@GeorgeJulian). Since writing my previous post, I’ve received copies of counsel’s position statements for this hearing (thank you to the lawyers involved!), so I now have much more detail than when I wrote my introductory post, and I’ve provided a new “Background summary of the case” below

Access to this hearing was a little stressful because the hearing hadn’t been listed on CourtServe so there was no publicly available information about which email to use to gain access or when the hearing would start (or even that it existed).  With the support of Celia Kitzinger from the Open Justice Court of Protection Project, I was able to join the hearing from the start because she took the time out of her Sunday morning the day before to assist me in reaching out to counsel and the judge’s clerk – both of whom were incredibly helpful in enabling me to gain access.  I was really impressed by the fact that I received a link to the case from Mrs Justice Arbuthnot’s clerk early this morning and was able to join the hearing from the start. 

Whilst I sat observing the case from the comfort of my MS Teams screen, rain pouring down outside, I couldn’t help but think about how observing the hearing is similar to playing with a kaleidoscope as a child. At first when you look, the pattern seems blurry but as soon as you start to adjust your gaze and turn the cylinder, the image becomes clearer.  Day 1 of William’s case was like that first moment you stare into the kaleidoscope and squint a bit to try to decipher the image… 

Background summary of the case 

The legal representatives in this hearing are Helen Mulholland (for the applicant Trust), Emma Sutton (for William, via the Official Solicitor) and Victoria Butler Cole QC (for William’s mother, Amy McLennan, the second respondent). The judge is Mrs Justice Arbuthnot.

I can’t help but to pause here for a moment to quickly add how inspiring it was to see a Court filled with an all-female legal team and a female judge!  Especially in a field where –  even as recent as my own undergraduate degree –  females were advised to rather pick areas of law outside of the court where they’d be able to divide their time between work and care-giver duties. 

William Verden is at the heart of this matter. As is to be expected at this stage of the hearing we know a great deal more about his clinical condition than who he is when he’s not being viewed as a ‘patient’. But the Official Solicitor did help us to form an image of this young man, when she spoke about his good quality of life outside of the hospital and some of his hobbies, which  include golf, laser-tag and football. 

Clinically, William has reached end-stage renal failure which has been caused by his rare kidney condition (steroid resistant nephrotic syndrome) – in other words, William’s kidneys cannot fulfil their function on their own and due to this he is undergoing dialysis treatment. Dialysis is unfortunately only a temporary solution in a situation like this and ultimately William requires a kidney transplant to survive. Without it he is unlikely to survive more than 2-3 years.  William also has diagnoses of moderate to severe learning disabilities, autism and ADHA with accompanying behavioural disturbances. It is uncontroversial between the parties that William lacks capacity to make decisions about his treatment options.  

The Court of Protection has been asked to decide whether a kidney transplant is in William’s best interests, applying s.4 Mental Capacity Act 2005, which requires the court to set aside any assumptions and consider all the relevant circumstances, including William’s own past and present wishes and feelings, his beliefs and values and any factors he would be likely to consider if he were able to do so.  There is evidence that William understands the basics of the choice he faces (that a transplant gives him a chance of extended life without the need for continued haemodialysis, but that it may not work) and he’s been consistent in his wish to have a transplant.

A patient’s wishes are not, of course, determinative of his best interests and it became obvious that the question the court has been asked to decide is not an easy one to answer.  

The Trust’s position: The challenges soon became clear in Ms Mulholland’s opening statement where she acknowledged the complexities of the case and stated that ‘the decision that is to be made by this court is an extremely finely balanced one and one which comes with significant risk to William either way.’  The crux of the problem is that William would need an extended period of elective ventilation and sedation to ensure compliance with post-operative care, as he will otherwise not be able to tolerate treatment and will pull out lines and catheters.  There is also a high chance (between 50% and 100%) of disease recurrence in the transplanted kidney, and this would ordinarily lead to a need for an intensive treatment, “plasma exchange” which is delivered daily in sessions of 6-8 hours at a time (alongside haemodialysis). Two intensivists (one instructed by the Trust, the other by the Official Solicitor) agree that the impact of sedation and ventilation to enable post-operative care would be acutely distressing for William and that he’d experience “long term psychological injury that would decrease his quality of life”, including Post Intensive Care Syndrome. The two experts consulted were of the view that ventilation and sedation “would potentially allow his transplant to succeed but as at a very significant cost to his wider health, both physical and psychological”.   In sum, the Trust view is that there is a low chance of successful transplantation outcome and that the ‘interplay between William’s physical and mental needs’ makes his case, and especially his treatment plan difficult, and unique to him. Due to this, the Trust is:

 “not able to agree, on the basis of all the evidence, that renal transplant is in William’s best interests, given that he would be put through burdensome and painful treatment which could ultimately be futile, would be likely to cause him injury – physical and psychological – and which, it is submitted, could compromise any future treatment he might require”.  

William’s mother, Amy does not agree with the Trust’s position and believes that kidney transplant (whether from a deceased or living donor) is in his best interests.  She would like the issues about post-operative care to be looked at “with a creative approach and an open mind”, asking what can be done to maximise the chances of William being able to tolerate treatment, including support from trained staff, and having clear strategies and plans to respond if William becomes agitated.  It became clear from exchanges in court that William’s mother recognises that kidney transplantation may not work: all she is asking is that it should be attempted, and that if the disease recurs in the hours or days after surgery that plasma exchange should be attempted for a short period and if that also fails, then. “with very heavy hearts” (Victoria Butler Cole’s phrase), it would need to be accepted that the attempt had been unsuccessful.

The Official Solicitor’s position (note it’s a preliminary position which may be amended after oral evidence has been heard) is that “the strong presumption that in favour of treatment that would or might prolong his life has not been rebutted – particularly where attempting the proposed treatment cannot be said to be futile or where there is no prospect of recovery.” A successful kidney transplant will prolong William’s life, it accords with his wishes and feelings (and those of his family), and the “valid” concerns about compliance with post-operative care should be addressed through person-centered care and reasonable adjustments to enable the delivery of that care.  However, the Official Solicitor also recognises three key facovers which point against William having a kidney transplant: the limited chance of its success, the risks involved in sedating and ventilating William, and the professional opinion of William’s clinical team, and second opinion evidence from a consultant paediatric nephrologist and a consultant nephrologist, that a kidney transplant is not in William’s best interests.  The decision is “finely balanced” and final submissions will be made at the conclusion of the oral evidence.

Day 1: The first witness: The treating nephrologist   

Today’s hearing predominantly focused on the first witness for the Trust. The Court of Protection often relies on expert witnesses to help them to understand facts of the case that is beyond the expertise of the Court. Basically, in a case like this, they will help the court to grasp the intricacies of William’s condition, the complexities involved with transplanting an organ, and other factors relating to his healthcare. In this hearing, we’ve been told that we will hear oral evidence from six medical professionals with various backgrounds relating to William’s condition. More details will follow as the case continues. 

Witness #1 Treating Consultant Paediatric Nephrologist

A few minutes passed while we waited for Dr A, William’s Consultant Paediatric Nephrologist to be admitted to the virtual court room. As is standard practice when giving evidence in court he was first asked   to provide a court affirmation and adopt his written statement. 

What has Dr X helped us understand about the case? 

  • William requires a kidney transplant to survive more than another 2-3 years.
  • Transplants are complicated operations and the main aim after the surgery is making sure that the new organ – in this case a kidney – stands the best chance of surviving and staying ‘healthy’. [Transplantable organs are a scarce resource and due to this it’s important to ensure even before the transplant that the surgery will be a success.]
  • When considering whether a transplant is in William’s best interests, we need to look at the care William will need to make sure that the transplant is successful. This point is where William’s case becomes tricky and due to this a lot of time was spent today exploring the various outcomes and what would be needed to ensure a successful transplant.
  • The main concern with William is that his rare condition might recur in his new kidney. Usually, if this occurs the doctors will administer a treatment called plasma exchange to try and save the kidney. Plasma exchange can be compared to dialysis – the patient is attached to a machine and their blood is filtered to remove the plasma component of their blood. Like dialysis, this procedure requires a patient to be attached to the machine for 6-8 hours a day – a situation that might be difficult for William to endure but not impossible. 
  • After the surgery, William will require a number of ‘lines’ (a haemodialysis line, a catheter, and wound drains). These lines all have different functions, for instance Dr X explained that the catheter will be used to check the ‘communication’ between the ureter and the new kidney. Collectively, all these lines will be used to make sure that the new kidney is not put at risk. 
  • Because it might be difficult for William to endure the treatments that could potentially be needed to make sure that his transplant is successful, the Trust is recommending that he should be sedated and ventilated after the transplant. 
  • The period of sedation and ventilation is dependent on how William’s body reacts to the transplant and what treatment he requires. It’s estimated at anything from seven days to six weeks.  
  • Throughout, Dr X stressed that William has a rare disease, this means that research is difficult to undertake and subsequently research data is limited.  As Dr A put it: “Because it’s a rare disease, people can’t do large trials and the literature is hamstrung somewhat by the small number of cases”.
  • The treatment regime being proposed for William would be unlike anything the hospital had attempted previously, making it hard to predict its likely outcome.

Under cross-examination by Victoria Butler-Cole QC,  some points that were addressed were:

 1) whether William could receive post-transplant treatment from home (for example, the plasma exchange)

 2) whether all measures were taken to support William in having a successful transplant (for example, providing a full-time carer in case William were to interfere with ‘the lines’. 

3) whether a possible cause of one of William’s lines being displaced previously could have been due to an inappropriate restraint by hospital security guards in December 2021 (“quite a shocking incident”, according to Dr A) 

The effect of this questioning by Victoria Butler Cole QC, was to raise doubts about the extent to which William would actually interfere with lines (because it seems that there is actually limited evidence that he has done so in the past) and whether the Trust’s best interest determination truly takes into account of all possible reasonable adjustments that could be used to help William tolerate the treatment and its aftermath.

Ms Sutton started her cross-examination by checking that what was before the court involved “very stark comparables”, in that   “…If he (William) had a transplant without disease recurrence, he’d live into his 60s…the comparable that we’re looking at is living into his 60’s as opposed to being surprised if he lived for another three years…these are very stark comparables that we’re looking at in terms of the 17 year-old’s life expectancy…”.

Under cross-examination Dr A confirmed that “but for his mental health issues the Trust would agree that kidney transplant is in his best interests”. The Trust, said Dr A, has previous experience of  kidney transplants for children with autism and ADHD, but William is “at the far end of the spectrum”.  There were also discussions about  whether William’s past reaction to treatment could be used an indicator for how he’d act in the future, and it was emphasised that since December 2021 there has been a significant improvement in the way he reacted to treatment. Dr A felt that this change was because William had become familiar with his treatment and routine. This same familiarity and routine could not necessarily be guaranteed when it came to the stage of offering William a transplant. It was highlighted that the use of living donor might leave more room for proper planning and getting William familiarised with his treatment 

The hearing came to an end with a re-examination from Ms Mulholand.  She asked  Dr A a hypothetical question about how he would advise  parents about the risks of a transplant if their child did not have William’s behavioural issues and had a disease recurrence under circumstances where plasma exchange could not be offered.  Dr  A replied that ‘treating anybody…without being able to offer plasma exchange would not be a sensible approach and would not be supported by our peers…it would not be a wise decision’  The re-examination also gave Dr X the opportunity to raise his concerns that William might be distressed by the situation he could find himself in after his transplant – he might wake up in a recovery room with alarms going off, surrounded by other children recovering and faced with staff he had never met before. This is a situation that would be difficult for anyone but even more so for William who according to Dr A could try to get rid of the lines – an act that would be detrimental for the success of his transplant. 

After the re-examination, the hearing was adjourned to provide Mrs Justice Arbuthnot with an opportunity to meet William who (according to the Official Solicitor) “very much wants to meet her Ladyship”.

The hearing will resume on Tuesday, 1 March at 10:30. 

Day 2: Oral evidence from a paediatric nephrologist and two intensivists

My start to the second day of William’s hearing was a bit rushed. I received an email from Celia Kitzinger (sent 10.13am) stating that she’d been informed by the judge’s clerk that the hearing would start 15 minutes earlier than listed – so the new start-time was 10:15am.  I joined a few minutes late and must admit that I was a bit concerned about disturbing the legal proceedings. Luckily, my MS Teams screen soon changed from ‘waiting in the lobby’ to the virtual courtroom and I quickly realised that I hadn’t missed any of the substance of the hearing as the Court was in the process of affirming the first expert witness. (I wondered if I’d missed the judge’s summary of her meeting with William the evening before, but other observers who’d attended from 10.15am said that – unusually – no report had been given publicly to the court.)

Today’s hearing revolved around the oral evidence of three key professionals, Dr Saleem, Dr Z, and Dr Danbury. It was an intense day of observation, lasting close to five hours with a lot of discussion of William’s clinical condition and explanations of the treatment that William might require as part of his post-transplant care, and what adaptations could be made to those treatments to balance care of the kidney with holistic care for William and his psychological health, and what the cost of omitting or curtailing some treatments might be.  

Nobody watching this hearing could doubt the intense scrutiny being given to how to act in  William’s best interests, with a complex set of facts (some disputed) about  a rare disease in relation to which there’s limited research evidence, and some possible treatment regimes that have never before been tried.

With kidney transplantation, doing the  transplant itself is only one part of the treatment: 

it’s also necessary to make sure that the kidney is taken care of afterwards. The witnesses are helping the Court to understand what would be necessary to ‘take care’ of William’s transplanted kidney, and whether or not, and how, standard transplantation treatment procedures could be adapted to help William tolerate what is, for anyone, an onerous procedure. 

There were a lot of references to the “Gold Standard” treatments that the Trust wanted for William in order to ensure the best possible transplantation outcome.  The ‘Gold Standard’ was contrasted with variations/adjustments/adaptations that might impair the likelihood of the kidney transplant being a success, but would effectively help get William through the experience.

Some of these adaptations were: sedating and ventilating William so that he’s ‘out of it’ for a period of time after surgery (when an onerous treatment called ‘plasma exchange’ is likely to be needed); providing intensive support from carers and family who can help him to cope;  withdrawing steroids early (to avoid behavioural side effects) and using the TWIST protocol.  Doctors were asked about the risks and benefits of each option.  There was some difficulty in answering questions where certain options had simply never been tried before.

 Because this is an extremely complex clinical case (a fact acknowledged so far by all witnesses) I will only be writing about the parts of the evidence that stood out for me. A more detailed live Twitter thread by George Julian can be read (starting with Day 2).

Witness 2: Dr Moin Saleem (Professor of Paediatric Renal Medicine)

Dr Saleem, a Professor of Paediatric Renal Medicine) is the first expert witness (as opposed to treating clinician) that we’ve heard from in this hearing. 

Within the first few minutes of his statement, we’re reminded of the unique nature of this case and why it has reached the Court of Protection.

Emma Sutton (counsel for William via his litigation friend the Official Solicitor) said:

 “you say in your report that you’ve managed several patients on dialysis with difficult behavioural problems but not with the degree of severity of ADHD and the aggressive behaviour…is it fair to say that treatment planning for William is particularly complex because of the LD, ASD and ADHD”.  

He said yes, he agrees with that.

“If he was a child who didn’t have these added complications, we’d, as a part of standard procedure, be working up to renal transplant” he said,  There are always risks associated with transplantation but (without the LD, ASD and ADHD) Dr Saleem indicated that he’d expect “on balance, a good long term outcome”.

The overarching question in this case is whether that can be achieved for William.

Dr Saleem’s account of the value of the TWIST protocol (hopefully to increase the likelihood that William’s transplant would be successful) quickly lost me and I was relieved to realise that I was not the only one drowning in medical jargon when Ms Sutton reminded Dr Saleem (not for the first time!) to slow down a bit  ‘please wait, I’m not able to get any of this down. It’s going realty quickly, and we’re not clinicians.’.

In yesterday’s hearing, it became clear that in William’s case we need to keep in mind that 1) his rare condition might recur in the new kidney (putting the safety of the kidney at risk) and 2) if this does happen the recommended treatment is plasma exchange (according to the Trust this will most likely need to be done by sedating and ventilating William).

Ms Victoria Butler Cole (counsel for William’mother) asked about the chance of the transplant being successful if William was not able to tolerate plasma exchange. The doctor said “it’s really hard to say because we’ve never tried it”.  When asked to entertain the hypothetical possibility that “no way he’ll make the plasma exchange, but let’s do the transplant anyway and try other treatments” he said, “it wouldn’t be futile but I would be putting a finger in the air to give you a figure”.

Additionally, “if he needs haemodialysis post-operatively and he can’t tolerate it, it’s potentially a life-threatening situation.  He would absolutely have to have a minimum level of haemodialysis to keep him alive”

Dr Saleem described the plasma exchange as a ‘gold standard treatment’ and also confirmed that ‘no responsible nephrologist would withhold plasma exchange’ . This ties into the Trust’s position that ‘the transplant should have the best possible chance of success.  

“The Trust feels – or at least their nephrology department feel very strongly (and there may be a tension here between nephrology and the intensivist) – that… it would be wrong to deprive William of plasma exchange as the standard only proven treatment and in fact that would be treating him differently from his peers.” 

One thing that really became clear during the re-examination by Ms Mulholland (counsel for the Trust)  was that the Trust and the Official Solicitor, as well as his mother had put a huge amount of work into making sure that every possible treatment plan has been considered for William: ‘the Court looks at this matter as creatively as it possibly can to help William’.

Witness 3: Dr Z (Consultant in Paediatric Intensive Care) 

Shortly before lunch, Dr Z a Consultant in Paediatric Intensive Care joined the court for his oral evidence. Most of his evidence was centred around giving the Court a better idea of what could be expected if William had to be sedated and ventilated after his transplant – in particular the risk of psychiatric harm to William.

I found it useful that Dr Z provided an explanation of the role of an intensivist in William’s case. He said that ‘as an intensivist our job is to facilitate the treatment recommended by the specialist teams. I’m reliant on the nephrology teams and their wider multidisciplinary team to predict and explain the level of intervention and the various lines and tubes that will be required to facilitate William’s treatment’. 

The crux of his evidence was captured for me when Dr Z said:

“That’s a really key issue coming at this from the perspective of a critical care doctor…. Almost always the treatments that we provide are in an emergency situation and there is a clear risk / benefit outcome in favour of undergoing intensive care treatment. This is a completely different scenario where you are looking at a very unusual situation of someone being intubated and ventilated for a really prolonged period, much more than what would usually be encountered. The reason it is difficult is because we know that being ventilated in intensive care is dangerous and harmful. It’s looking at a balance of risk and benefit across the whole piece. Clearly a human can be ventilated almost indefinitely but you will cause considerably harm to them during that episode.”

During Ms Cole-Butler’s cross-examination she returned to the harm that William might be subjected to and stated ‘…because you’re helpfully setting out all the bad things that could happen, we come away with this view that intensive care is full of extremely risky awful things and we can lose perspective that, yes, it is intensive treatment and there are risks but often there are risks that are worth taking…”. She continued to outline the different scenarios would need to be considered, and stated that for William’s mother, even if the psychiatric harm did lead to a significant reduction in William’s quality of life, this reduced quality of life would be better than William dying.  

Dr Z’s response to this was difficult to listen to and truly made me realise why it is so important for the court to fully understand the consequences of sedating and ventilating William. With a truly empathetic  expression, he said: “I would not want to reduce the value of her [the mother’s] opinion at all,  but we just come from a different standpoint where I have been faced with patients who have passed through intensive care who have described it as being like ‘torture’ and asking why we ever put them through it…and that is inevitably going to colour my opinion of the costs and the burden of intensive care leading into the future. It’s really hard to appreciate those if you haven’t been in the situation yourself.”

Witness 4: Dr Danbury (Consultant Intensive Care Physician) 

The last witness we heard from for the day was Dr Danbury, a Consultant Intensive Care Physician. Right from the start it was clear that Dr Danbury also regarded William’s case as a complex one.  

Ms Sutton referred to Dr Danbury’s expert report, saying  “…you confirmed that you have never ventilated a patient on ICU electively for six weeks or you haven’t even heard of an adult receiving elective ventilation for two weeks”.  

Dr Danbury confirmed that he would not recommend elective ventilation for six weeks but he had changed his view on whether two weeks of ventilation would be in William’s best interests after hearing the evidence by Dr Saleem and Dr Z:  “if the Court decides that it is in William’s best interests to receive elective ventilation, I can see that a period for up two weeks…might be in his interests,  but I struggle to go further than that and it would be very much a maximum.

The much-discussed risk of psychiatric harm (as highlighted by Dr Z) was a risk that Dr Danbury did not underplay – especially if William is subjected to a long period of elective ventilation. He spoke about the factors (medication and previous history of renal replacement therapy) that added to William’s high risk of delirium as well as other psychological risk such as Post Traumatic Stress Disorder (or Post Intensive Care Syndrome). 

From his statement it once again became clear how finely balanced William’s case is: ‘…from a strictly medical point of view I think it’s justifiable [the risks] but if you take things in a holistic perspective,  it might not be.  I’m glad that’s not my decision…’

At the end of this second day of the hearing, the court was  told that on the following day William’s mother, Amy, would like to give a statement to the court.  There will also be oral evidence from a consultant psychiatrist and consultant clinical psychologist.The hearing will resume on Wednesday, 2 March at 10:30am (unless otherwise notified: it might be wise to be ready to join from 10.00am just in case of an early start).

Day 3: Evidence from treating psychiatrist and expert psychologist – and a statement from William’s mother

This morning, I joined the MS Teams virtual court room to observe the third day of William’s hearing.  There were no hiccups and the hearing started promptly at 10:30am.

Today the court heard more oral evidence and after hearing evidence from so many health care professionals over last two days,  I feel I have a much better understanding of the clinical side of William’s case.

Terms like ‘disease recurrence’, ‘elective ventilation’ and ‘plasma exchange’ are no longer words from another language that leave me puzzled. This is largely due to not only the clear way in which the key professionals have provided their evidence, but also because of the legal counsels’ comprehensive questioning to ensure that the Court is provided with a holistic view of William’s condition and possible future treatment. 

This third day of the hearing focused on the oral evidence of Dr Y (William’s treating psychiatrist) and Dr Carnaby, a psychologist appointed by the court with expertise in learning disabilities and autism.  Together they helped the Court to understand more about the psychological and psychiatric aspects of William’s situation. 

Their evidence was followed by a statement from William’s mother, Amy who once again reminded us that at the heart of this matter is William: she described him as ‘very active, loves golf, any activity he can do really, any job – if anybody has any jobs, he’ll do it. He just loves being busy. He’s just full of life. He’s full of energy. He’s such a beautiful boy – beautiful inside and out’. As yesterday, my post is by no means a full reflection of everything that happened in court today. I’ve rather chosen to focus on the parts of the evidence that stood out for me. There a brilliant, detailed comprehensive Twitter thread by George Julian here:

Witness 5: Dr Y – Treating Consultant Psychiatrist

Dr Y, a Consultant Psychiatrist who works in the child and adolescent mental health services was the first witness to join the court today to give oral evidence. 

The evidence from Dr Y revolved around the following aspects of William’s treatment plan (not in this order). 

1) whether it was in William’s best interests to receive a transplant. 

2) the likelihood of William developing a psychiatric injury if he is sedated and ventilated post-transplant.

3) Whether William had been offered enough support from the Trust to comply with his treatment.

4) The mental impact on William if a) he received a transplant, but the treatment was unsuccessful or b) he did not receive a transplant because it was decided that it was not in his best interests. 

5) Factors that counted in William’s favour to receive a transplant. 

  1. Whether it’s in William’s best interests to receive a kidney transplant?

Writing this now, after the hearing I can only say that it was a bit of a “oh wow” moment when Ms. Butler-Cole QC asked Dr Y at the end of her cross-examination whether a renal transplant was in William’s best interests and Dr Y responded simply with:  “Yes, I think it’s probably is in his best interests”. 

In re-examination, Ms Mulholland asked Dr Y whether she based her opinion that a transplant was in William’s best interests on a psychiatric perspective or on nephrological aspects. Dr Y responded: “It factors in the nephrological component…in my view it would be in William’s best interests to have a transplant and were he to have one it would be in his best interests for him to have optimal treatment to ensure that that transplant was successful  – because that will not only be a better outcome for his physical health, but also, as you asked me previously, there would not be the impact of having not only having gone through a transplant but it not being successful, which would have a significant detrimental effect”. It was also confirmed that in reaching her assessment, Dr Y did include the 50/50 chance of disease recurrence in the new kidney. 

2. Psychiatric Injury 

When asked by Ms. Mulholland what the likelihood was that William would incur psychiatric injury if he were sedated and ventilated after the transplant surgery, Dr Y responded: 

I think it’s more likely than not. The risks of, for example, developing PTSD post-treatment on PICU is anywhere between 35%-80%.  That risk is increased in children who have neurodevelopmental difficulties…so the risks are likely to be on the higher side for William”,

Dr Y also explained why there is a higher incidence in children and young people with neurodevelopmental difficulties.

“…Reason for that is thought to be, for example in ASD the sensory overload in that environment where children have sensory processing difficulties…it’s also about the intrinsic ability to process and understand events and memories post-PICU. You can see how the two interplay. The way in which people recover from psychological trauma is to understand and process experience and memories. That requires a degree of flexible thinking and abstract thinking. You can understand that is difficult for someone who has ASD…”

Apart from PTSD, Dr Y also told the Court that William could also potentially suffer from a range of other psychiatric injuries: depression, anxiety, delusional memories, nightmares, panic attacks, flashbacks, low mood, lack of motivation, sleeping problems and general lack of enjoyment. Although it was difficult to predict precisely how these conditions would affect William, and their longevity, Dr Y’s evidence can be summarised as follows: 

  • PTSD and other psychological injuries could resolve or get better in the first couple of years. 
  • Psychotropic medications could be used to assist William in his recovery. But she emphasised that William is ‘particularly sensitive’ to these medications and does not always have a typical response.

Based on the evidence presented by Dr Y, Ms. Sutton asked during cross-examination: “is that a risk worth taking if it provides him the opportunity of having the renal transplant”.  Dr Y replied with a single “yes”. 

3. Has William been offered enough support? 

At the start of her cross-examination, Ms. Butler-Cole QC (representing William’s mother) stated that Dr Y was the first witness the Court had heard from who’d actually met William. Dr Y described herself as not being a ‘regular face’ and said that she only met William on a few occasions – during capacity assessments and when there were difficulties on the ward etc. 

Ms. Butler-Cole QC returned to Dr Y’s earlier statement where she explicitly stated that it was a ‘team effort’ to care for William, and that team included William and his family. Ms. Butler Cole QC questioned whether  his mother had been invited by Dr Y or the ‘team’ to draw up plans for how William should be treated in hospital. 

To this, Dr Y responded: “My understanding is that Amy [William’s mother] has spoken to and sees the focused-support team.  We’ve commissioned a team specifically to meet the needs of young people on the ward.  They are based around the corner from the dialysis unit and have daily interactions with William and the staff supporting him”.

Referring back to the records, Ms Butler-Cole QC said it seemed as if the team had only been involved since December 2021. 

Uhm…they have been involved prior to that, but you are probably correct, it’s probably more so since then…but they have been involved prior to that to help us draw up the psycho-education and information packs for William, for example when doing the capacity assessments”.

Familiar carers who know William are a crucial part of ensuring that William gets the best possible care, tailored according to his needs. For instance, we heard from Ms. Butler-Cole QC of words that were triggers for William: calling him ‘Will’, rather than ‘William’, and referring to ‘dialysis’, rather than ‘therapy’.  The level of support he receives is also key to William shows a  tendency to ‘pull out’ or ‘fiddle’ with his lines and whether this past behaviour should be seen as indicative of how William would act if he received a transplant (with the necessary and adequate support). 

This also raises the issue of whether staff involved with William’s care are adequately trained.  Ms.Butler-Cole QC questioned the witness about a few examples which seemed to indicate a problem. I will not go into detail,  but check out the  live tweets by George Julian.

Then there was the incident with the security guards in December 2021. “The previous Friday, one of the security guards told William to ask for him because they have a good relationship. That Monday when they arrived, that security guard wasn’t on shift which disappointed William and he became very unsettled.” Ms.Butler-Cole QC pointed out that this was  a departure from the PBS (Positive Behaviour Support) plan: William shouldn’t be told something will happen and then it doesn’t.  

The next deviation from the plan was that one of the nursing staff told William that dialysis would take five hours rather than four hours.

His mother’s account of the incident (as reported by Ms Butler Cole QC) continued, “William then hit out at a carer and a member of nursing staff, so three security guards attended the ward, and he was then taken off the machine. Security suggested that he restarted and then have a long walk after that”.

William agreed to this and was told that it would take five minutes to be reconnected to the dialysis machine, but this then took 45 minutes. As pointed out by Ms Butler-Cole QC – this was another obvious trigger for William. 

What followed is captured by George Julian (TBC is Ms Butler Cole QC: WV is William Verden): 

Ms Butler-Cole QC concluded,  ‘We can see with the benefit of hindsight all the things that went wrong that day and ultimately it culminated in a security guard physically restraining William and that’s not right and shouldn’t happen should it.” . It was confirmed by Dr Y that this behaviour would only be justified if there is an ‘immediate risk’ and that the correct approach would rather be “to follow William at a distance to ensure his safety and allow him to calm down”. 

When this incident was later brought up during Ms Sutton’s cross-examination of Dr Y,  I was relieved to hear that the Trust had already taken steps to involve the security personnel in training to be better equipped to deal with William.

4. Pathways and mental impact on William 

Two different scenarios were addressed and their impact on William’s mental health considered: first that a decision is made that a kidney transplant is not in William’s best interests; second that it’s decided it is in his best interests to have a transplant, but it turns out to be unsuccessful.

A decision not to attempt a transplant would be ‘tricky’.  Social stories based on a kidney transplant have been used with William since July 2021 and William has developed an understanding of what a transplant would mean for him. Dr Y summarised it as “He knows having a transplant means no more dialysis and he wouldn’t have to come to hospital all time”. Ms. Butler-Cole QC asked Dr Y during cross-examination what the impact would be on William if he was told that he would in fact not receive a transplant. Dr Y explained that it would ‘undoubtedly be very upsetting for him’ and that it might have an impact on his compliance with dialysis treatment. 

In her re-examination,  Ms Mulholland raised the question of how William would respond if he had the transplant, but it was unsuccessful. Dr Y replied: “That would have a huge impact on William. He does not have an understanding of that concept. He understands that a transplant would mean no more dialysis, no more line but… if the transplant does not work and dialysis continues it will be a huge loss for him…especially having gone through a traumatic process…”

5. Factors in favour of a transplant 

During the cross examination, Dr Y confirmed that William understood that he would die if he did not comply with his dialysis treatment. Ms. Butler-Cole QC asked: “it’s more than parroting back, he is understanding from his behaviour and he is putting two to two together, isn’t he?”

To answer this, Dr Y spoke about William’s understanding of death.: “When you have in-depth discussion with William…his understanding of time is quite impaired…so his concept of death is that it’s not a good thing. But his concept of death wouldn’t be what your concept, or my concept of death would be…He understands it’s not a good thing and not something that he wants because he wants to carry on doing the things that he likes to do…” 

Ms. Sutton cross-examined Dr Y about the work that would be needed to prepare William for a transplant.  This involved (said Dr Y):

  • Part 1: Social stories to help William understand his treatment plan.  These stories will focus on haemodialysis at home, the transplant, and treatment for disease recurrence. 
  • Part 2: William will meet the clinical team and support staff. 
  • Part 3: Mock lines will be placed to ensure that William knows what to expect post-transplant. 
  • Part 4: Using a 3D model to help William understand the transplant process. 
  • Part 5: A pre-packed hospital bag (Dr Y described it as an ‘anchor’ to take away some element of surprise)
  • Part 6: Update the PBS plan to take into account likely post-operative risks

Witness 6: Dr Steve Carnaby (Consultant Clinical Psychologist) 

Dr Steve Carnaby, a Consultant Psychologist, was the last witness called to provide evidence. I’ve grown oddly accustomed to seeing witnesses join remotely so it took me a moment to get used to seeing a witness in the court building.

Ms. Sutton opened the questioning, which briefly covered capacity before focusing on best interests.

Dr Carnaby confirmed that in his view, both in his written report and now having listened to the updated evidence and heard from Dr Y this morning, William lacks capacity to make his own decision about whether or not to have a kidney transplant.

On best interests, Ms Sutton focused on the written evidence submitted by Dr Carnaby that, with reasonable adjustments (including the social story, mock lines, PICS visit etc previously outlined by Dr Y), William could be supported to get through the experience of transplantation and its aftermath with minimal need for sedation and ventilation (and the risks associated with that).  

Summarising Dr Carnaby’s position, Ms Sutton said:

From a behavioural perspective it is your opinion that if it were possible to reduce post-surgery sedation to the absolute minimum so as to reduce the risk and impact… a transplant for William could be considered on the back of a highly intensive experimental simulation training programme developed for him…” 

Dr Carnaby’s position – on the basis of having observed William while he was receiving dialysis, as well as meeting him in person, and discussing his situation with his family and treating professionals – remained that, with the right kind of preparatory work, post-surgery sedation could be reduced to a minimum. 

Counsel for William’s mother said that “clearly the purpose of this hearing isn’t to cast aspersions, but Mrs McLennan’s case is there are a number of things that weren’t done which could make things better for William”. 

Given the Trust’s position is that post-surgery sedation and ventilation will be essential, it’s not surprising that Ms Butler Cole QC, picked up this matter in her cross-examination.  With support to “make things better for William”, could sedation and ventilation be minimised?  Dr Carnaby thought it could and accepted that it would be important to have William’s regular carers with him in hospital, “people he feels safe with, who he trusts, who understand him and have a good understanding of autism”.

In particular, Dr Carnaby focused on the need for autism-sensitive and “William-specific” training for anyone brought in to care for William:

Counsel for the Trust challenged the idea that William might not require post-operative sedation and ventilation.

Ms. Mulholland said: “The position of all the team, apart from you, is that post-operative sedation and ventilation is essential to keeping William safe, keeping his graft safe… In light of all of that do you maintain your view that post-operative sedation and ventilation is not necessary?”  Dr Carnaby replied: “I think my comment was, I defer to the experts”.

Even when questioned about William’s ability to deal with an unexpected situation such as deceased donor donation, when William might be called into hospital in the middle of the night, with all the stress that would occasion, Dr Carnaby emphasised (while deferring to experts) the value of supportive interventions that could help William: “A social story could make it something to look forward to, something exciting. So, yes, it might happen quickly, but it may be another area of life where surprises can be built in. It’s not on the timetable but it’s a good surprise.”

Dr Carnaby repeatedly emphasised that William’s clinical and support team would play an important role in the success of his treatment.  For example, “what’s been said about risk of trauma, PTSD in particular, I think that risk can to an extent be mitigated by thinking carefully about who is supporting him at the time. Everything is based upon ensuring that the core team that is trained and consistent are able to give him what he needs…”. The risk of William pulling at his lines could be mitigated (he said) if a team of carers could be provided to look after William around the clock. 

When asked about the mental health consequences for William of not being offered a transplant, he said:

William has a very black and white way of seeing things. Meeting him, my sense was he believes that he has a transplant or he will die. I think he will struggle with another way with no clear outcome… In terms of impact on his mental health, the risk is that he’ll no longer want to comply with treatment, I think there would need to be a complete revisiting with him about sessions and end goal. He needs things to be concrete. My concern for him is that he’ll give up. He won’t see the point of complying (with the dialysis regime)…”

And if the transplant was unsuccessful?

I think disappointment obviously, sadness and loss… I think it will rest on how it’s framed to him…how the outcome is explained to him. There’s something around everyone trying to give him the best chance. My view would be he could move more towards accepting something that’s gone wrong, when something’s been tried as opposed to being stopped from doing something…”

William’s mother, Amy McLennan’s, Statement 

The day ended with William’s mother, Amy, addressing the Court. For a moment, the Court was able to view William through her eyes – a young person who is ‘open to life and everything it has to offer and ‘deserves a chance’.

The evidence presented over the last three days leaves no doubt that Amy is a dedicated mother, who is and will continue to be fully involved in William’s care. But, it’s towards the end of her statement that it becomes clear just how well Amy grasps William’s future prospects “I understand everybody’s risk, but I think William’s voice needs to be heard… and he, I think deserves a transplant… I’m not under any illusion that it might not work but he just deserves a chance”. 

At the end of day three, I found myself feeling a bit disappointed.

I am by no means a medical expert but I was hoping that the evidence would address what  life with a transplant would be like for William. The evidence focused predominantly on preparing William for the transplant procedure and making sure that post-transplant care (in hospital) is adequate and possible,  but did not really address what his life would be like afterwards, if it’s successful. 

Throughout the hearing, evidence was provided that William finds disruptions to his routine “very anxiety-provoking” (Dr. Y)  –  but life (as far as I understand) with transplant involves a great deal of change and potential disruption to routine.  It’s filled with uncertainty that is often beyond the organ recipient’s control and often involves hospital admissions for treatment due to the transplant (for instance when infections occur). Obviously, this is not a reason to decide that a transplant is not in William’s best interests, but as part of making this best interests decision, it is important to understand what life would be like for William after a successful transplant once he left hospital. The only consideration of this was in relation to PTSD and other psychiatric trauma caused by ICU, and his expected lifespan. But, given the focus on adequate support for William’s in-hospital treatment, it would be my hope that consideration would also be given to similar support once he is discharged. 

My next blog will be about the closing submissions in this case on Thursday, 3 March 2020.

Bonnie Venter is a PhD candidate and Research Associate at the Centre for Health, Law and Society situated within the University of Bristol Law School. Her PhD research is based on an empirically informed evaluation of the legal and regulatory framework guiding the living kidney donation pathway in the United Kingdom. She tweets @TheOrganOgress. 

Acknowledgements: I am greatly indebted and would like to thank 1) Celia Kitzinger for her endless efforts and time in helping me prepare these blog posts – I could not have done this without her guidance 2) George Julian for her extremely comprehensive live tweets of the hearing and 3) the legal counsel for sharing their position statements with me.

Photo by Richard Catabay on Unsplash

Communicating bad news: A s.21A decision

By Celia Kitzinger, 1 March 2022

Ms C says she hates where she lives – in a residential care home (I’ll call it“Beech House”). She has said so “loudly”.

She expressed her “strongly held feelings” directly to the judge when he met with her on 25th January 2022.  Throughout that meeting she maintained, in strong terms, that she does not wish to remain at Beech House and that she wants to move to a home of her own in the countryside.

The court has just decided, at a hearing I observed on 3rd February 2022 (COP 1002630T, before HHJ Farquhar at Brighton County Court) that she’ll be staying at Beech House for the foreseeable future.

It’s not that unusual for the court to make decisions that run counter to the wishes and feelings of the person at the centre of the case. An oft-quoted judgment by Mr Justice Mumby (Re M: ITW v Z [2009] EWHC 2525 (Fam)) was cited in this case in relation to the decision:

… in considering the weight and importance to be attached to P’s wishes and feelings the court must, of course… have regard to all the relevant circumstances… [including] […]

(d) the extent to which P’s wishes and feelings are, or are not, rational, sensible, responsible and pragmatically capable of sensible implementation in the particular circumstances; and

(e) crucially, the extent to which P’s wishes and feelings, if given effect to, can properly be accommodated within the court’s overall assessment of what is in her best interests

It was submitted by the CCG (represented by Eliza Sharron, that Ms C’s wishes are “not capable of being given effect to, within the context of her best interests”. 

Counsel for P (Oliver Woolley, instructed via her litigation friend the Official Solicitor) agreed – with the caveat that “the Official Solicitor is fully cognisant of the importance of [Ms C’s] ascertainable wishes and feelings and the conclusion reached by the Official Solicitor has as a result not been reached without a degree of hesitation”. 

This is another clear example of the tension between P’s wishes and feelings and the position advocated on P’s behalf.  

It is routine practice for the litigation friend in the Court of Protection not to represent P in any conventional legal sense but to instead identify and relay P’s wishes and feelings, investigate and assess the available options, and present what the litigation friend considers to be in P’s best interests.

Ordinarily, a lawyer who submitted entirely the opposite of what she knew her client to wish would face, at best, professional sanctions, and at worst, a claim for negligence. In the Court of Protection, however, current practice would tend to suggest that there are circumstances where the lawyer must indeed argue against their client’s wishes. It is ironic and is (or should be) a cause for concern that they are doing so in relation to the most vulnerable of clients, and do so on the basis of instructions given by a person – a ‘litigation friend’ – contending that they are acting in the best interests of the individual concerned.” (Litigation friends or foes?  Representation of P before the Court of Protection, by Alex Ruck Keene, Peter Bartlett and Neal Allen)

The practice of P’s litigation friend advancing something contrary to P’s wishes is unremarkable in the Court of Protection

What really stood out in this case was the approach taken communicating the decision to Ms C (who was not in court for the hearing).

The hearing

Ms C is in her 40s with cognitive impairment caused by an acquired brain injury in 1996. She also has a diagnosis of organic mood disorder and engages in “emotionally dysregulated behaviour”. 

There’s agreement between the parties that she lacks capacity to make her own decisions about residence and care: this means that the ‘capacity’ qualifying requirement for the s.21A standard authorisation for deprivation of liberty is met.

The parties also agree that the ‘best interests’ qualifying requirement is met. Their view is that, given the options available to her (basically there aren’t any alternative placements on offer that will meet her needs), it’s in her best interests – despite her wishes and feelings – to stay where she is.

Ms C has been in Beech House since February 2020, following the breakdown of a whole series of previous residential and community-based placements.  

When she was living in a supported living bungalow with 2:1 support, she made threats to staff and threats of self-harm.  These incidents led to her being admitted to hospital and the provider served notice.  

She was then admitted to Beech House on an emergency basis, on what was supposed to be an interim placement while somewhere more suitable was identified –  and she’s been there ever since.

The problem is that, after a long search (proceedings have been ongoing for almost 3 years),  no alternative viable options are available that will meet Ms C’s needs.  

Although a number of different types of placement have been explored, the independent social worker, Mark Caulfield, who acted as the court-instructed joint expert, came to the conclusion that it was in Ms C’s best interests to remain at Beech House.

In part, this is because the level of care she’d need in a supported living or community-based placement would in fact be more restrictive than at Beech House. She currently has 1:1 care and carers are (as counsel for Ms C put it) “able to step back when not needed”.  It seems agreed that she’d need 2:1 care if she were to live in the community, and she’s previously described that level of care as feeling “like a prison”.  

She also seems to have “settled to a degree” in her current home.  She’s expressed “shifting” views about it, and is “happy with some elements of the care environment, whilst expressing frustration with others”.  The expert considered it likely that Ms C would “express some level of unhappiness about any package of care and support that would meet her level of need”.  

He recommended that she should remain at Beech House but that steps should be taken to support her with more activities, including art sessions, physiotherapy, and a gardening group starting up in the late Spring (all of which the CCG has agreed to fund). 

When she moved into Beech House, she brought very few of her own possessions with her (it was supposed to be an interim arrangement) and most of her things are in storage.  She’s now being helped to access the storage facilities and sort out what she wants to keep.

The parties agree with the expert that “it is currently in Ms C’s best interests to remain living at [Beech House], given the failure of the community-based models that have been attempted previously”.  They think she might make progress and potentially move to independent living in the future, but that will take sustained professional input over some years – of the type available to her at Beech House. 

The Official Solicitor endorsed the view of one of the CCG witnesses:

Having tried a range of community-based models for [Ms C] in the recent past without success, it is the CCG’s view that the best chance of [Ms C] making meaningful progress over the long term, with a view to attaining some of those goals, including potentially moving to independent living, is at [Beech House] where she has access to a range of outside professional input that will be available to her there in a stable environment.”

In the end, he said, there are no other options available, and Beech House is appropriately meeting Ms C’s needs.  Ending these long-running proceedings is also in her best interests (he said),  as “although it is not the decision that  [Ms C] would have wished for, it will at least provide certainty as to her arrangements moving forward”. 

All this seems to have been agreed between the CCG and the Official Solicitor back in December 2021, at what was anticipated to be a final hearing. 

But before a final decision was made by the court, the parties agreed that consideration would need to be given about how best to inform Ms C of the outcome.  The Official Solicitor also requested that Ms C be given the opportunity of meeting with the judge, so that she could express her wishes and feelings directly to him.

At the hearing I watched on 3rd February 2022, the CCG invited the court “to determine these long running proceedings, based on the fact that the qualifying requirements are met”.  It was, said Eliza Sharron, “effectively an agreed order that could be dealt with on the papers, but seeing that it’s clearly against the wishes of Ms C, it was important that the issues should be set out in a hearing in a public setting. It doesn’t need to look rubber-stamped.”

The judge approved the order, acknowledging that: “everyone knows that this decision is not what she wanted; she’s made that very clear to everyone who wanted to hear it and lots of people who probably didn’t want to hear it.”  He was, he said:

 “… satisfied the criteria are met in terms of capacity and best interests and so I’m left with the position – and I’m not going to say ‘unfortunate’ position, because I am satisfied this is in her best interests, and so although I know it’s not what she wants, that’s only one factor I have to take into account.  I approve the order in full. I hope things go well.”

Communicating the decision to Ms C

So, having had a bit more than month to consider how best to communicate to Ms C the unwelcome news that she would be remaining in Beech House, here’s what the team came up with (having consulted widely with those caring for her).  This approach is formally documented in a lengthy recital to the order made by the judge.

  • Representatives of the CCG will inform Ms C of the outcome after the court has made a final determination by meeting Ms C in person in the conference room at Beech House
  • They’ll commission additional support for Ms C in the event that the court decision triggers distress and very challenging behaviour
  • The CCG will provide an easy read document to Ms C during the meeting (covering the points set out in a document annexed to the final order) – but will mainly discuss the outcome with her 1:1 and answer any questions she may have.
  • It was not proposed that a social story be developed, because it was believed that this could cause further distress and confusion to Ms C.
  • Once Ms C has been informed of the decision by the CCG, her solicitor will make contact to consider the appropriate timeframe for a final visit to speak with Ms C (to try to ensure that she’s not too distressed at the time of that visit)
  • The same information (from the easy-read document) will be used by all professionals when informing Ms C of the decision.  

The “essential contents of easy-read document” attached to the order are:

  • That there was been a court case all about Ms C, and where she should live in the future
  • A Judge has been asked to decide where Ms C should live, because everyone thinks that she cannot make the decision for herself because of her brain injury
  • Ms C has solicitors [names redacted] who come to visit Ms C and meet with her on video to find out what Ms C wants.
  • The judge has met with Ms C and listened to what Ms C wants for her life.  Ms C has been clear that she does not want to remain at [Beech House].
  • The judge has also listened to what her case manager [name redacted] and independent expert professionals think is best for her.
  • Ms C has been having some input into her mental health and is being seen by new professionals. Everyone is pleased at the progress Ms C is making.
  • The Judge thinks that Ms C is well cared for and is receiving the care she needs and thinks she should stay at [Beech House] for now.
  • Everyone hopes that Ms C will make enough progress to live more independently in the future.
  • The Judge has made a decision in Ms C’s best interests that Ms C should continue to live at [Beech House]
  • Everyone knows that this is not the one that Ms C wanted. It is okay to feel upset and angry about the decision. Ms C can ask questions about the decision. She can talk to staff about how the decision makes her feel.
  • Ms C’s court case will come to an end, but Ms C will continue to be seen by her case manager [name redacted], and her RPR [name redacted]. Although Ms C’s court case has come to an end, she may be able to make an application to court in the future if there is an actual alternative option for the Judge to consider. She should speak to her RPR about this in the first instance.

I haven’t seen the easy-read document itself, and I don’t know how well – or how badly – Ms C took the news, but I was impressed by the care taken over how to inform her.

UPDATE

Georgina Byrne, a solicitor at Macintosh Law, acted for P in this case. She says:

A difficult decision for the judge, but ultimately the right one. It is always difficult to manage a P’s expectations throughout a case, and particularly so when it is unlikely that the court will be able to endorse their strong wishes. Careful and delicate consideration of how best to inform P of the outcome of their challenge is essential and it was certainly worth the extra time spent. P understandably didn’t take the news well, but we’ve tried to make sure that she has the support in place for her to try to process the decision

Celia Kitzinger is co-director of the Open Justice Court of Protection Project. She tweets @KitzingerCelia

Photo by Clare Tallamy on Unsplash

Introducing an upcoming hearing: Is a kidney transplant in his best interests?

By Bonnie Venter, 28 February 2022

Over the next few days (from 28th February 2022), I’m going to be observing a Court of Protection hearing (remotely) in Liverpool, concerning whether or not a kidney transplant is in the best interests of a 17-year-old  called William Verden.

The case is called Manchester University NHS Foundation Trust v William Verden and Amy McLennan[i].   The applicant Trust is providing medical treatment for William.  Amy McLennan is William’s mother.

I’m going to be writing a blog at the end of each day of the hearing describing what happened and highlighting significant issues.

My research

My interest in this case stems from my passion and interest in organ donation and transplantation.

Donation and transplantation raise so many ethical questions. Who should be allowed to act as a living donor? Should we allow the use of animal organs as a substitute for human organs? Should we consider all citizens to be potential organ donors upon their death? 

I’ve spent most of my academic career engaging with questions about how law and policy can play a part in addressing the ever-increasing gap between the supply and demand of organs. 

My research started off somewhat optimistically exploring the suggestion that paying living kidney donors would be the perfect solution. But, after conducting more research, spending time in transplant clinics and observing a few transplants, I realised that I had to adjust my sights slightly and be more realistic about ways to improve the shortage.  

Mostly, I learned that, as lawyers, we don’t always consider clinical practice when making policy recommendations and that this often leads to good laws on paper but these laws fall short when applied in a hospital. 

This approach led me to pursue my PhD at the University of Bristol where my research looks at the relationship between the law, regulation, and living kidney donors. As part of my research, I’ve been fortunate enough to interview living kidney donors, health care professionals and policy makers to gain a better understanding of how they experience the law. 

Living kidney donation is one of the main ways to overcome the organ shortage. Although, it was at first met with some resistance since a healthy person is ‘harmed’ (operated on) to improve the life of another, it has now become a common occurrence. The law in the UK (The Human Tissue Act and its accompanying Regulations) allows for both related and unrelated donations as well as donations from ‘strangers’ which are known as non-directed altruistic donations

Media coverage

A few weeks ago, I was scrolling through Twitter – a hub of activity for the transplant community.  With hashtags like #organdonation, living donors share their insights on the donation process, organ recipients often express their gratitude, and transplant professionals are quick to post and retweet new developments in organ transplantation. 

It’s not often that the law becomes an active player in this field, but on the evening of 8th February 2022, tweets were being fired off about a ‘legal battle’ between a mother and the Manchester University NHS Foundation Trust after the trust decided to oppose a kidney transplant for her 17-year-old son. Naturally, I was immediately intrigued and decided to delve into it further. 

At first it was difficult to determine the facts of the case and the legal question. Newspaper headlines varied greatly, and the public’s reaction reflected different narratives (most probably based on the discrepancies in the media coverage). This month, BBC News reported:  ‘Mum’s search for kidney donor that could save son’s life amid legal row’.  In a similar tone a local paper, LancsLivereported ‘Mum’s desperate plea to find kidney donor for teenage son before tine runs out’ 

Earlier media coverage from 2021 seemed to have a different tone, the Mirror reported a boy begging ‘I don’t want to die’ after NHS doctors insisted on end-of-life care and the Daily Mail referred to possibility of a High Court challenge to save a boy from a ‘death sentence after a decision was made to withdraw life-saving dialysis. These headlines pointed to various legal questions: was this a best interest decision to withdraw dialysis or could it perhaps rather be a matter for judicial review because the transplant was related to a resource allocation decision due to the scarcity of donor organs (a situation that has sadly been exacerbated due to the ongoing COVID-19 pandemic). 

Luckily a Twitter post by Victoria Butler-Cole QC (@TorButlerCole) who is acting for William’s mother, soon clarified the situation: the Court of Protection was being asked to make a best-interest decision regarding medical treatment options for the 17-year-old son. What is expected to be a four-day hearing is scheduled to start on Monday 28th February. 

Background to the case

I know a little about the case already from reading an earlier judgment in this case:  Manchester University NHS Foundation Trust v Verden & Anor [2022] EWCOP 4 (08 February 2022).  

The young man at the centre of the case,  William Verden (aged 17), is living with steroid resistant nephrotic syndrome. William also has diagnoses of moderate to severe learning disability, autism, and ADHD with accompanying behavioural disturbances. 

  • William is in end stage renal failure which means that only two treatment options are available: (1) the dialysis that he is currently receiving, which is only a temporary solution or (2) a kidney transplant. 
  • The applicant, Manchester University NHS Foundation Trust, approached the Court of Protection for declarations concerning William’s decision-making capacity and to make a best interests determination regarding his treatment options. 
  • The Trust does not consider a transplant to be in William’s best interests. This decision is based on (1) the likelihood of the steroid resistant nephrotic syndrome recurring in a transplanted kidney, which will mean that William will require another transplant in the future; and (2) William will require sedation and ventilation for up to 6 weeks to ensure that he complies with post-transplant care.              
  • William’s mother, Amy McLennan does not agree with the Trust’s decision and relies on other expert evidence which essentially states that a transplant is a ‘feasible option’ and that there is ‘reasonable potential for a good long-term outcome’. 
  • All parties agree that, if he were to have a transplant, then a living kidney donor would be the best option for William, both clinically – because the waiting time would probably be shorter and William would be likely to have a better-matched kidney – and because a living donation can be planned beforehand which will allow William to be well-prepared for the transplant. 

This last fact, regarding the preference for a living donor, is where the Reporting Restriction Order comes in.  William’s mother made an application to vary the reporting restrictions to permit naming of her son.  This was because she wanted to launch a public appeal for an altruistic living donor (a decision supported by William).  The variation in the reporting order was made at a hearing on 8th February 2022 (which is why in writing this blog post and reporting on the case I can also – unusually for a Court of Protection hearing – not just report what happened, but also use the names of the key people at the heart of the case). Fortunately,  the law does not prevent patients from seeking an altruistic donor via social media but this must be done with the help of  NHS Blood and Transplant and the medical team treating the potential recipient. In William’s case a call for a potential living donor has already been launched and within a week media coverage reported that a number of potential living donors had already come forward and would be tested to determine whether they would be a suitable match for William. 

Yet, not all aspects of the hearing have been as positive as the public appeal for a living donor. There’s been some concern that William is being discriminated against based on his autism diagnosis, and Mrs Justice Arbuthnot touched on this point in her judgment when she said that “there is a great deal of public interest in the way that people with autism are treated by the NHS”. Relating to the point of discrimination, is the matter of how the court will engage with the question of decision-making capacity and transplantation – especially since there is a growing interest in how to improve access to transplant for individuals who lack decision-making capacity but a rather limited legal and regulatory framework to guide these decisions. 

This court case will have a life-changing impact on William and his family. The judge is tasked with making difficult decisions that will have a major impact on individuals’ lives. 

Decisions about organ donation and transplantation are usually made by multi-disciplinary teams consisting of transplant co-ordinators, surgeons, nephrologists, and other health care professionals (depending on the trust) based on clinical guidelines provided by the British Transplantation Society and NHS Blood and Transplant. It’s rare for these decisions to be scrutinised by a Court.

I’m excited to have the opportunity to witness first-hand a hearing so close to my personal and academic interests. My daily blog posts for the Open Justice Court of Protection Project will share my observations about what happens in the hearing. I’m eager to see how it plays out in court and whether this hearing might lead to any legal developments in organ donation and transplantation. 

Bonnie Venter is a PhD candidate and Research Associate at the Centre for Health, Law and Society situated within the University of Bristol Law School. Her PhD research is based on an empirically informed evaluation of the legal and regulatory framework guiding the living kidney donation pathway in the United Kingdom. She tweets @TheOrganOgress. 


[i] The mother’s first name is spelt “Amy” in most of the media coverage and in some court documents I’ve seen, including the judgment of 8 February 2022,  but “Ami” in other media reports and other court documents, including the transparency order.  I understand she uses both spellings, and will use “Amy” (except where quoting) in my posts.

A man with a diagnosis of schizophrenia can be conveyed to hospital against his wishes for assessment of his ulcerated legs

By Claire Martin[1], 24th February 2022

A man in his 40s, Mr M, has severely ulcerated legs and he is reported to be declining or avoiding medical assessment. He has a long-standing diagnosis of schizophrenia and depression and is said to be addicted to Class A drugs (heroin and/or crack cocaine).  He lives in supported living accommodation. 

This application is made by the local authority with responsibility for providing Mr M’s s.117 care and support package. His social worker made a statement in support of the application.  The Official Solicitor commented that the social worker’s attempts “to protect Mr M’s health, and his sense of being powerless to do so, come across clearly. It seems that he feels driven to make this application, believing it to be the only way to avert amputation”.

We have blogged about other amputation cases herehere and here – and amputation is a potentially foreseeable outcome of the next hearing (depending on what the assessment of the legs reveals about treatment options).

This case (COP 13883671) was before Mrs Justice Theis at 2pm on Monday 14th February 2022. The Local Authority was represented by Ulele Burnham, who provided a helpful ‘thumbnail sketch’ (at the judge’s request) to the history of the case:

This is an application brought by Local Authority on 3rd February 2022 concerning an application to remove P and have him conveyed to hospital and detained there by force if necessary for assessment of his ulcerated legs. The Local Authority has been trying for some time to persuade P – he also has an arm amputated and is said to be an IV drug user – it has become more worrisome and he has been declining to have it examined by the district nurse. The reason for Local Authority concern is that those who visit say that the wound is becoming more malodorous and he has refused any offers to have it assessed. The Local Authority has sought to have contact with clinicians when he was taken for treatment for his leg in October 2021. The Social Worker was not provided with any significant guidance about what to do … and the Local Authority felt bound to place this matter before the court as they have very grave concerns about sepsis and the risk of amputation if not attended to[2].

At a previous hearing before Mr Justice Peel on the 8th February 2022 (blogged here) Mr M had been unrepresented and the case had been adjourned to secure representation for Mr M via the Official Solicitor (Katie Gollop) and for the NHS Trust to provide more information about his clinical situation (as far as it was possible to know). The applicant Local Authority was also directed to provide a skeleton transition plan, pending an order that Mr M could be taken to hospital for assessment. 

Celia Kitzinger notes the following exchange in her blog about the first hearing for Mr M:

Mr Justice Peel:  I understand you want to achieve an assessment as quickly as possible.  For me to be satisfied with that, there has to be some opportunity for Mr M through the Official Solicitor, to make representation.  I find it hard to see on the basis of what I’ve read that I could do otherwise. The Official Solicitor needs to be present for these sorts of discussions doesn’t she?

Burnham: My Lord, I would say not.  She’ll be on notice for this application.  It should be rare for this to happen, but it is the concern of the local authority that he should get to hospital quickly. [from No decision without representation, the previous blog about this case]

Today, Ulele Burnham referred to this first hearing as ‘slightly abortive’. The position of the Local Authority was that, on this occasion (at the last hearing), representation for Mr M was not necessary for an order to be made for medical assessment. The application was being made urgently, and of course there will be very urgent situations when action does need to happen, but this case did not appear to be of those: 

Mr Justice Peel : That’s exactly the problem you are dealing with.  You were right to bring this application, but you don’t have medical evidence, so you’re dealing with this slightly in a vacuum, and that makes it very difficult for you to put forward any cogent evidence that if he doesn’t have an assessment this afternoon it might have life-changing consequences.  It’s the absence of up-to-date clinical evidence, combined with the absence of Mr M who isn’t here and isn’t represented, that prevent me from making the orders you are seeking today.  I can’t see how I could be persuaded to go down that route. [from No decision without representation, the previous blog about this case]

What has been happening for Mr M? 

The current situation for Mr M, in terms of accessing health care, is that he was last seen in hospital in October 2021 and has not been seen by district nurses since, as he tends to go out when they are due to see him. He is reported to have developed ‘circumferential’ leg ulcers around January 2020, which have now become infected. He prefers to dress them himself using pillowcases and rags. One leg is now said to be very swollen and he cannot get a shoe on it, and the ulcers are reported to smell badly. However, a vascular surgeon has advised that the smell does not necessarily indicate infection, and that fever is more of a risk indicator (for infection and urgency of treatment). 

Mr M was diagnosed with schizophrenia in 2006 and has also had an arm amputation (reportedly due to ‘non-compliance with medical advice’). He does not have any family to support him and is not known to have friends either. He receives a lot of support from the workers in the supported living home where he lives on the first floor. 

Katie Gollop, counsel for the Official Solicitor, described Mr M as a ‘sweet and charming gentleman’ who ‘goes out and begs and then he spends the money on heroin – and because he’s only got one arm, he can’t inject it into his arm so he injects into his legs.  He injects into the open ulcers because he gets swifter access that way.’  This sounded excruciating to me and I could see that others in the hearing might have had a similar visceral response. When there have been attempts to speak to Mr M about his leg ulcers, he is reported to say that he thinks there is nothing wrong with his legs, which would explain why he declines to accept offers of district nurse and hospital appointments. 

In October 2021 a rehabilitation psychiatrist assessed Mr M’s capacity to make decisions about the medical treatment of his leg ulcers and found him to lack capacity to make this decision – based on an inability to use and weigh relevant information. Following this, Mr M did go to hospital (in October 2021):

Judge: Am I right that previously, P had been compliant with a visit to hospital? 

BurnhamYesthe crucial circumstance was the police were in attendance and explained to him there was a record of his capacity and he was encouraged to get into the ambulance and he did so with some persuasion. It would probably have been difficult for him to physically resist but he didn’t appear to physically resist. He was guided to the ambulance without further incident.

There was an urgent Deprivation of Liberty authorisation, but Mr M left the hospital twice and apparently on 27th October 2021 the hospital discharged him ‘without prior warning to the applicant [Local Authority]’. 

So, since that time it seems that there has been a lot of liaising between the Social Worker/care home and the hospital (including advice from a vascular surgeon and contact with the mental health team in the form of a further capacity assessment by an Occupational Therapist, in January 2022). It was unknown whether talk of an IMCA (Independent Mental Capacity Advocate) had been acted upon in November last year. 

The assessment, we were told, would be ‘visual’. The reasons given by the NHS Trust for requiring assessment at hospital rather than at home were that Mr M tends to go out when professionals arrange to see him at home. Further, the lighting at home is not good enough for an adequate visual assessment of his legs and the environment is not sterile. The Official Solicitor was satisfied that the proposal to transport Mr M to hospital was proportionate.

It wasn’t clear to me how efforts had been made to discuss the leg ulcers with Mr M – although it was clear from the hearing that his Social Worker had made repeated efforts to do so. 

Katie Gollop submitted that ‘having spoken to two members of staff who work at P’s accommodation  [there is] sufficient evidential basis for an interim declaration that there is reason to believe that Mr M lacks litigation capacity’ and that ‘his thinking is driven not so much by schizophrenia but addiction to Class A drugs’.  It did not seem, however, that a definitive assessment had been completed addressing litigation capacity and this was suggested to be necessary by counsel for the Official Solicitor. 

Mr M’s voice and views were conspicuously absent in this hearing – other than a clarity that his actions suggest that he prefers to avoid medical assessment and intervention (and that this seems to be a longstanding attitude, given the information about his arm amputation ‘several years ago’). Katie Gollop clearly stated that, even with assessment of his leg ulcers and medical recommendations, it is far from straightforward to determine his best interests – Mr M uses a crutch to walk about, and the loss of a leg (if this were the medical recommendation) would make getting about extremely difficult for him. It might mean he had to leave his current home, and he might not adjust to prostheses (if these were possible). 

What was the outcome of this hearing? 

Mrs Justice Theis agreed the order that Mr M should be taken to hospital (forcibly if necessary) for assessment of his leg ulcers. She ordered that the case should come back to court on Friday 11th March 2022 for a further hearing to establish Mr M’s litigation capacity, and (if necessary) to determine his best interests in relation to treatment of his leg ulcers. 

The judge was concerned to establish the details for the ‘conveyance’, Emma Galland (counsel for the hospital trust) set out the hospital’s proposals, which include arranging for the police to be present for the transfer to hospital:

Galland: [Mr M would be] conveyed to A&E, there would be a flag on his medical records, so that the consultant vascular surgeon would be aware and do the transfer from A&E to ward.

Judge: I want more detail as to the underlying practicalities. I suspect there is one realistic opportunity to do what this order hopes – assessment, advice and discussions, but busy professionals with changing rotas and times and things, and there needs to be a drilled down recital that sets out what’s going to happen. … The order needs to be redrafted to have more details in the recital. It needs some more thought.  At the moment the order takes [Mr M] to hospital and then there’s an assessment and then a hearing fixed. All of that presumes there’s going to be cooperation but given the context of drug addiction I doubt it’s going to be that straight forward.           

The hearing broke at around 2.30pm to enable counsel for the applicant to amend the draft order and what she called the ‘conveyance plan’, and reconvened at 3.23pm. 

The revised order included the possibility of needing an anaesthetist at the ready ‘in case they need to sedate him to assess or treat him’. Katie Gollop asked that the words ‘will be given diazepam’ be changed to ‘may be given diazepam’. 

There was discussion of providing the court order to the ambulance service and to the police, and the need to ‘tidy up’ how it was written, since, the judge said:

“If I was an ambulance driver and I was given this order as a framework to operate in, I wouldn’t be very sure about what I could and couldn’t do. It needs to be clear to each of the people who are going to have this order as to what they can and can’t do” (Theis, J)

It was established earlier that the use of the Mental Health Act was not relevant, since the proposal was for assessment and treatment of physical health (“the connection between his impairment and amputation is too remote for the Mental Health Act”, Emma Galland). The Deprivation of Liberty authorisation was therefore key in ensuring all professionals charged with caring for Mr M on the day he goes to hospital understood the scope and limits of their authority to act. I left the hearing feeling quite unclear about exactly how a paramedic or police officer, for example, would be allowed to restrain or sedate him, and anticipate that this level of detail would be in the final order sent to the judge for approval. 

Final Thoughts

I felt quite sad at the end of this hearing. Mr M’s case had come to court ‘urgently’ the week before (though he has had leg ulcers since 2020), without him being represented. 

Though he was represented at this hearing, no one had managed to engage Mr M in thinking about himself (he’d left the house shortly before the time when the agent for the Official Solicitor had gone there to meet him, by appointment). As a result, we had no idea what he thought about the prospect of being ‘conveyed’, potentially against his will, to hospital for assessment of his legs. Had Mr M been told that this hearing was happening? Might he feel frightened at this suggestion? If he knew that the assessment in hospital might be ordered anyway, might he have views on people from his home whom he would like to accompany him, to help him cope with it? Were any of Mr M’s care workers asked to give evidence? Was he offered the chance to meet with the judge?

It seemed likely that Mr M wouldn’t want to engage, but we didn’t hear about wider efforts to include him. This recent guidance from the Vice-president of the Court of Protection notes s.4(4) Mental Capacity Act 2005, that efforts to include Ps ‘must’ be made: 

A judge meeting with P can achieve a number of important objectives, including (where P lacks capacity) their participation in ‘best interests’ decision-making, as required by s.4(4) Mental Capacity Act 2005.  Which provides:

(4) He must, so far as reasonably practicable, permit and encourage the person to participate, or to improve his ability to participate, as fully as possible in any act done for him and any decision affecting him.

It is important to emphasise the mandatory nature of this obligation”.

The Official Solicitor had instructed an agent to try again to make contact with Mr M prior to the hospital appointment, which I felt very pleased to hear.

I did wonder whether any other form of engagement with Mr M had been considered (apart from the vague mention of an IMCA). Mind and Rethink both offer advocacy services. These might have been tried of course, and not discussed in the hearing.  Had Mr M been made clearly aware (over several occasions) of the potential consequences of treatment or no treatment? Again, he might have been and have been unable or unwilling to join in with this sort of conversation. It is important to note that, just because he has a diagnosis of schizophrenia does not mean he could not understand these issues. So, what is the reason for his proposed lack of capacity? The submission was his drug addiction. 

Kate Gollop suggested that his ability to use and weigh information about depriving him of his legs or healing his ulcers is affected by the fact that either would inhibit his drug-taking activity on which he’s clearly dependent on a daily basis.”

Was the medical situation so urgent that time cannot be given to working out who else might be best placed to help him understand the situation further? I kept thinking that he had managed to avoid seeing health professionals for so long (since October 2021) that he might have no idea what was in store for him, should he continue to give everyone the slip. 

I have been thinking about Mr M’s life as a whole – is he the sort of person who just does not want to engage with the healthcare system? If he were deemed to have mental capacity to make health care decisions, he would be allowed to refuse any and all assessment and treatment.  

From a medical perspective, it is clearly the best option to at least assess what is happening with Mr M’s legs and recommend (and, if necessary, offer) treatment. The consultant vascular surgeon has advised that general treatment options could include above the knee amputation, debridement or meticulous wound care. Whether Mr M himself – when capacitous – would agree to this is another matter, and at present we do not have much to go on in terms of his wishes and values. 

Katie Gollop noted that, if amputation is recommended, clinically, as the most appropriate action, then consideration needs to be given to, and balanced against, making a best interests decision.  The impact on Mr M’s mobility, access to the outside world, capability to adjust to the physical demands of an amputation, the psychological impact and how his drug addiction could be managed are all relevant factors in a best interests decision for him, should it be declared that he does lack capacity to  make this decision for himself. 

The case comes back to court on Friday 11th March 2022, and, in the judge’s words will last for a ‘day less an hour’. We are not sure if it will be remote, hybrid or in-person. Look out for the listed hearing on our Twitter account and on the home page of our website where we post “Featured Hearings”

Claire Martin is a Consultant Clinical Psychologist, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Older People’s Clinical Psychology Department, Gateshead. She is a member of the core group of the Open Justice Court of Protection Project and has published several blog posts for the Project about hearings she’s observed (e.g. here and here). She tweets @DocCMartin


[1] Thanks to Celia Kitzinger and Aura Mackintosh Bamber, with whom I (virtually) observed this hearing: reading our private messaging conversation has helped me to remember reflections as we went along. Thank you also to Katherine Newman-Taylor, Consultant Clinical Psychologist (Hon), Associate Professor, and Lead for PG Diploma in CBT (Severe Mental Health), University of Southamptonfor helpful discussion about capacity and people who experience psychosis. 

[2] I would like to thank Celia Kitzinger for her detailed notes from the hearing, which enabled me to cross-check against my own notes for accuracy of quotes and information. Nevertheless, some quotes are likely to be paraphrased or with substitute words, as we are not allowed to record hearings and we rely on typing up our notes as quickly as we are able during the course of the hearing.

Photo by Steve Johnson on Unsplash

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 11th 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 11th 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


[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

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

A response to ‘The politics of the pandemic…’: COVID-vaccination of a disabled man

By Alice Hodkinson, 19th February 2022

A recent blog post (The politics of the pandemic in the Court of Protection) reports and comments on a hearing before Deputy Circuit Judge Rogers in Nottingham (Case no. 13816452) at which the judge ruled that an autistic learning-disabled man in his 30s, living in a care home, should be vaccinated against COVID-19, in spite of his sister’s concerns that vaccination was not in his best interests.

I was asked to look at the blog about this case following an interaction on Twitter where I expressed my distress at the overwhelming opinion that vaccination is a good thing in all circumstances and that any dissenters were just wrong. 

Often on Twitter any opinion expressed contrary to the current paradigm is met with abusive personal responses that don’t look at the issues themselves but just react aggressively against any view contrary to their own apparently entrenched view. 

Of course, I have my own biases: I am a GP and A&E doctor who has seen quite a number of coronavirus sufferers, but also people who had come into A&E too late with other conditions, some of whom died. I have also experienced first and second hand the harms of the pandemic response in terms of family illness, difficulties and disagreements. 

In my medical practice I endeavour to follow evidence-based medicine; this means I am not always on the side of the medical establishment that can be focused on one specialist area while missing the bigger picture. Occasionally the medical establishment is simply entrenched in practice that should have changed

I have found the response to coronavirus distressing because it has not appeared to follow the evidence that we had available at the time. Neither how we treated children nor how we treated the elderly were sensible responses; indeed, the deaths amongst the elderly were tragically high while children bore a high burden of the lockdown for no benefit to their own health. Now that we appear to be coming to the end of the pandemic, dissenting academic voices are becoming more prominent and I can be more open about my own reading of the evidence. 

These vaccine cases are fascinating for many reasons, and I enjoyed reading the blog, reminding me why I took a Masters in Ethics and Law a few years ago. This case was only ever going to be decided one way, as case law usually supports vaccination in the case of disagreement unless the protected party can be shown to have, or to have had, a clear personal perspective, such as that of the protected party in the case of Re SS (Re SS [2021] EWCOP 31).  But this case was unbalanced in terms of the people involved in the case and how the evidence was framed, and I am not entirely sure that it was in this particular person’s best interests to be vaccinated. I must make clear, though, that I only have the blog for my information: I was not present for the hearing itself. 

Also, for clarity, I was vaccinated against COVID-19 in January and March 2021, having decided early on that it was my duty to aim to protect other people, rather than myself. I didn’t realise at the time that the vaccine wouldn’t stop me spreading it to my vulnerable relatives or patients. I have been vaccinated against all the usual infections, have my ‘flu jab every year and my children are fully vaccinated.

 I found this blog difficult to write as I am one of those who find myself abused on social media for having opinions that might be different from the prevailing narrative. 

The case

The subject of this case is a 39-year-old man with “severe intellectual disabilities and severe Autism Spectrum Disorder” who lives in a care home. 

He cannot consent to vaccination, but would have been vaccinated in his “best interests”,  if it were not for the objection of his sister who strongly opposed his vaccination. It is reported that he is in good health but his behavioural and learning disabilities, his residence in a care home and any other conditions or medications statistically increase his likelihood of doing poorly if infected with coronavirus.

He had already been exposed to coronavirus in his home; indeed, he was the only resident not to develop symptoms of the virus even though he was unable to wear a mask or to distance himself from others. It is very likely, therefore, that he has met – and his immune system has interacted with – the virus already. 

While vaccination may well be in his best interests, there are enough uncertainties to consider that this is not as clear cut as it might appear: these include his previous exposure to COVID 19 infection and the controversies over the epidemiology of the vaccines themselves, as questioned by some prominent scientists.

Risk of infection for P

So, what is the risk of infection for P? Before one is exposed it is difficult to say for certain, given there have been some deaths in very young people while there have also been cases of remarkably few symptoms in some elderly people. Broadly, however, the older and more generally unwell, the more likely one is to do worse or die from a COVID infection. On balance, the risk is low for P as he is young and said to be in good health, although undoubtedly with a higher risk than a person of a similar age without disabilities.

However, things change once someone has had the infection: we can say for certain what the risk has been for that individual from that episode. Given that P had little or no illness from interaction with the virus in his home, the risk to him from future infection is most likely to be reduced, with the caveat that a more deadly immunologically distinct variant might arise which would put him at risk along with the rest of us, vaccinated and unvaccinated alike.

We do know that previous infection confers some protection, and it appears that second infections are usually less severe[1]. It is also known that vaccination as well as infection appears to add to protection from further illness, if not from infection.

For P, as he had very few or no symptoms, we can reasonably reliably say that he is unlikely to be particularly unwell from the same or another similar variant of COVID-19 coronavirus. This is also supported by studies on coronaviruses from before the 2019 pandemic started.

Risk of vaccination for P

What about the risk of vaccination? The risk of significant vaccination injury appears to be very low, in the region of 10 in 1 million, although absolute numbers vary with the source of information.

There have been, however, concerns raised by some well-known statisticians and epidemiologists about whether there are overall mortality benefits from the vaccine, but these have been unpublished; journals that were very happy to publish their other work have decided not to publish these particular data. It may be that medical and science journals do not want to publish anything that could be used by the anti-vax or COVID-denying groups; however, not having these data in the mainstream literature means that it is not peer reviewed and not criticise,d and we cannot learn from it in a scientific forum. Thus it remains a grey area. There are papers are available online via Professor Fenton’s web page, a man we certainly can’t label as uninformed, antivax or a COVID-denier, or any of the other ad hominem attacks that people who question the current paradigm have levelled at them. 

Clearly, if vaccination is in P’s best interests, then he should have the vaccine. We do not know, before he has the vaccine, if he will have a reaction. We do know that he has not shown any effects from his exposure to coronavirus, so the balance of the risk and benefit to him individually has shifted, even if all he gets from a vaccination is the pain of the jab, the distress of being restrained and a few days of a sore arm for each vaccination he is given.

Altruistic vaccination?

If it could be argued that it is in his best interests to be vaccinated because it reduces the risk to others, then this could be a reason to vaccinate: case law has allowed altruism to be a reason for some treatments (Re Y (Bone marrow donation [1996 2FLR 787])

In this instance, we cannot demonstrate an altruistic benefit to P: the Delta strain was infecting vaccinated people in the UK; Omicron is even more easily transmitted; vaccination does not give sterilising immunity (preventing future infection) although it does appear to reduce severity and the likelihood of catching the disease by a small amount. Vaccinating P will not prevent infection of other residents in his home, so this cannot be a justification for vaccination. 

P’s sister

Reading the blog, I felt quite sorry for P’s sister. It appears that she was seen as a disingenuous figure, not having her brother’s best interests at heart, with ulterior motives for her opposing his vaccine. This is an impression that I did not read in the case description myself. Indeed, I cannot see why anyone would go through court proceedings unless she was very much trying to do her best by her brother. 

She provided a spreadsheet of information about the vaccine that is described as “non-expert” by one of the barristers in the case, Victoria Butler-Cole. And this of course is the trouble: the question of who decides what information is valid, what is true, who is an expert or non-expert, and it cuts to the heart of the information wars that we have had since the start of the pandemic. If professional epidemiologists, statisticians, Bayesian modellers, professors of risk information, evidence-based medicine and theoretical epidemiology can be blacklisted, finding themselves unable to be published then how can we know where the facts truly lie? We are in a world where an expert in evidence-based practice for 30 years can be “fact checked” by an unnamed employee, on the basis of the current paradigm. Indeed, the British Medical Journal (BMJ) itself has been fact-checked (see here and here). This leaves us in a knowledge desert, where none of us can know fact from fiction with many an expert voice silenced.

P’s sister, CT, started with the view that it was this vaccine that she did not trust, from a concern that it has not been widely used and reviewed as yet. This is entirely reasonable given that there was such a short time from developing and trialling the vaccine to its widespread use. When it was being rolled out, I think most of us believed it would be used for those at highest risk and not on low-risk young people – as serious side effects would most likely be much higher per life saved in the young. 

I would agree that some of P’s sister’s arguments are likely to be a misreading of the statistics.  It appears to be clear that those who are vaccinated are at much lower risk of dying of COVID-19, but there were more vaccinated people in ITU with COVID than unvaccinated, simply because so many people had been vaccinated by then. On the other hand, what we don’t know is the true effect of the vaccine on all-cause mortality, if, as Professor Fenton describes, there has been widespread misrepresentation of vaccination status. 

That CT changed her tactics to looking more at best interests, rather than problems with vaccination, seems to me a straightforward and sensible thing to have done, given she realised that the initial approach would not work. I don’t see this in anyway as disingenuous. It seems quite reasonable, particularly as she was a litigant in person and did not have a legal expert to support her preparation. 

Dr Rogers, GP

From what was written about Dr Rogers, I also feel sympathy for his position. For me it is not at all illogical or “ironic” that he should want to help out in a health crisis to take up his registration again to help his colleagues. Indeed, it is entirely logical. One set of beliefs about helping in a crisis does not mean one has to believe everything that comes out from the authorities about that crisis. 

What is striking is that we failed, in most countries, to protect the very elderly and very vulnerable. The suggestion to put in focussed protection for these groups was dismissed, perhaps causing terrible loss of life[2]. Dr Rogers supports the use of Ivermectin for the treatment of Covid, it having shown some promise last year. It was added to the PRINCIPLE trial run from Oxford University but the results have not yet been published, that I can find. There are articles in the scientific press that support its use, but on balance it looks like it is not effective, or sufficiently effective, to be used – unless further evidence comes to light. Given that there isn’t yet an answer to the Ivermectin question, and the questions over the effectiveness and harms of lockdown, judging him for his view about these seems a little premature. 

Dr Rogers is indeed on the team of the UK Medical Freedom Alliance. I had not come across this group before, but they certainly have a point that we should be fully informed, free to accept or decline intervention, there should be absolute transparency on drug and vaccine data, and that there are ways we could have handled this pandemic better. The information on their website is certainly compelling and concerning if genuine, as it appears to show that the responses to COVID did very little indeed. Questioning the current pandemic paradigm might look entirely logical given the inconsistencies of the data, particularly as much has not been published, either from censoring of information or from lack of transparency from the pharmaceutical companies. This of course is difficult to prove, but is not unknown in medical science, as seen in the long-running battle of the BMJ editor to get the full information about statin trials run by the drug companies. 

Dr Rogers’ statement on COVID-19 not being a disease of the young is broadly correct, certainly at the start of the pandemic, and we knew this from the information we had from China two years ago. It is still the case that COVID-19 is causing very little disease in the very young, although it is causing infection. Those who do poorly are children with underlying health problems which makes them very vulnerable, and for these it seems sensible that they should be vaccinated. Dr Rogers also describes the vaccine as being ineffective – which is only partially true in that it doesn’t prevent infection. It does appear to prevent serious illness given that it is almost universal that it is the unvaccinated in ITU with COVID-19. (It is probably not surprising that the COVID vaccinations are not sterilising, in other words they do not prevent infection, given the failure to find a vaccine against the common cold, for example, and other coronaviruses, thus far; indeed, perhaps it is surprising that COVID vaccines work as well as they appear to.)

Dr Rogers is not an expert in any particular field, being a GP. GPs are, at their best, advocates for the individual person based on their individual needs and beliefs. Even retired, he was probably more of an expert than the people in the court room. 

Returning to P’s sister…

I don’t think that criticisms of P’s sister are entirely justified. CT would have liked P to have one blood test rather than vaccination, which is not a straw man argument; his having three vaccines, including booster, could be much more distressing than one blood test. Sadly, blood tests are not guaranteed to demonstrate prior infection (they usually look for antibodies only rather than other markers of immunity), so he may have ended up with the blood test as well as vaccinations. 

If one starts from the principle that the risks are fairly well balanced, as I have tried to argue, CT’s answers become entirely reasonable. I am not surprised she feels bullied and victimised, as the questions aren’t that relevant to P’s situation, but more to a general risk of COVID to the wider society. So even with the inquisitorial court proceedings, CT will be affected by the accepted paradigm and feel that she has to fight from a “child ego state”.

It appears to me, reading this case report, that all the bloggers were critical of CT. This might be that I am reading it from the position of understanding her view, given that I am not a fan of vaccinating someone who probably won’t benefit and might be harmed.  But the information that Celia reports (in one section of the the blog) regarding CT’s scepticism of childhood vaccinations brings another layer to this case. It appears that CT does not trust any vaccines, even ones that have been proved to be safe, effective and neutralising: some of the most important ones worldwide are polio and measles, both of which cause devastating illness in the very young. This undermines her case that her argument is purely about the COVID vaccination. Yet she still had a valid case that it wasn’t necessarily in P’s interests to be vaccinated, or at least, that it was finely balanced. 

Conclusions

It is a reasonable conclusion, as argued above, that P is likely, given his prior exposure to COVID infection, to be more at risk from vaccination than from re-infection, even with waning immunity or a more pathological strain. 

Along with many people in the country who have had one or more mild or asymptomatic infections with COVID, vaccination of P appears to be a waste of effort and resources when at that time we could have been concentrating more efforts on vaccinating the elderly, frail and sick who couldn’t get to vaccination centres. 

Vaccination appears to have been a good tool to build immunity and prevent deaths in those at risk of severe illness. Whether it has helped us to transition to living with an endemic virus I don’t believe is clear. There are still some scientists and doctors who appear to believe that having a vaccination reduces the risk to other people, but the Omicron wave has demonstrated this is not the case given the incredibly fast spread at the end of last year.  When the Secretary of State decided not to mandate vaccines after all there was an outcry on Twitter, even from doctors, that they would not want to be treated by an unvaccinated health care worker – this without evidence of harm to others from unvaccinated people. 

CT is trying to do the right thing for her brother, and I can see her rationale. However, the case was only ever going to be found in favour of vaccination, so she put herself through quite a bit of trauma for no likelihood of the outcome she wanted. 

But the major issue here is that we are not a nation, a world, where scientific debate is being allowed at the moment, where differing interpretations of the data can be shared and debated in an open and constructive manner. We cannot know for certain where the reality lies; those who think they do are surely mistaken.

Let me be clear: I also do not know where the evidence points, because the evidence is not reliably available to examine. I do not know this because the supremacy of evidence-based medicine has been lost, which is personally devastating, as I wonder what will happen to evidence, debate, scientific method and freedom to explore uncertainty. 

The Open Justice Court of Protection Project has published blogs about other vaccine cases. 

The following  paragraph is taken from a blog about a case (COP 12770223) before DJ Mullins via MS Teams on 23rd December 2021.  It concerned “a man in his 30s with severe cerebral palsy and learning disability (MK) who has yet to receive even a first COVID vaccine because his mother objects”. 

Looking through the chronology of the case, the judge said.  “It’s not my role to point the finger at any individual or organisation, but it doesn’t make comfortable reading.  Vaccination was first considered in February or March 2021 and here we are in December and there hasn’t been any resolution – and no vaccination.  And now he has COVID. Though he seems to be doing relatively well?”

Again, this is a disabled man who is managing well with the infection. As well as his disabilities he also needs kidney dialysis, so he is clearly a vulnerable person who we would expect to do badly from COVID infection: an early vaccination would have been sensible. But as it turned out, he wasn’t vaccinated and was not particularly unwell from the infection. Perhaps he was simply lucky not to have caught the infection until it was the Omicron variant; maybe he has inherited a robust immune system; maybe we are wrong about who is likely to do badly with COVID. Whatever the reason, now that he has had COVID, unless we see the return of more pathogenic variants, it would seem that COVID does not present such a risk for him that vaccination is definitely in his best interests. In the event of more pathogenic variants then all of us, vaccinated or not, could be at risk of illness. As reported in a subsequent blog posthowever, the judge inevitably decided that vaccination was in his best interests.

In the fullness of time, I hope that some more settled science emerges so that we can learn what factors are important in a healthy immune system and how to manage a future pandemic more effectively to protect the vulnerable much better than we did in these last two years, while also preventing so much damage to people struggling in our wider society. 


Alice Hodkinson is a GP in the East of England. She worked in Emergency Medicine (A&E) for most of the pandemic but is back now working in general practice. She completed a Masters in Medical Ethics and Law at King’s College London in 2018 and the Diploma in Tropical Medicine and Hygiene in 2021. She tweets @HodkinsonAlice


[1] Spicer et al 2022. Protective immunity after natural infection with severe acute respiratory syndrome coronoavirus-2. International journal of infectious disease. 114: 21-28; Gazit et al 2021. Comparing SARS-CoV-2 natural immunity to vaccine-induced immunity: reinfections versus breakthrough infections.;  Abu-Raddad, L.J. 2021. Severity of SARS-CoV-2 Reinfections as Compared with Primary Infections. N Engl J Med 2021; 385:2487-2489; Kojima, N & Klausner, JD. 2021. Protective immunity after recovery from SARS infection. Lancet; West et al, 2021. A case of COVID-19 reinfection in the UK. Clinical Medicine (London) 21(1): e52-e53. Note: some of these publications would not have been available at the time of the hearing. 

2 The Great Barrington Declaration shows there is no consensus from the scientific and medical communities that the measures put into law were reasonable and sensible.

Photo by Martin Sanchez on Unsplash

No decision without representation

By Celia Kitzinger, 11th February 2022

Mr M (who’s been diagnosed with schizophrenia) has ulcers on both his legs. The one on his right leg is getting worse and becoming “malodorous”.  

He refused to allow doctors to assess him when he was admitted to hospital back in October 2021.  

Outpatient appointments were made, but he did not attend them.  

He’s declined to admit the district nursing team to his home and has not attended GP appointments.  

There is no information about the condition of his leg since the end of October, except that the community mental health team (who have visited him) are concerned.

The local authority has made an “urgent” application to the court that it would be in Mr M’s best interests to take him into hospital against his wishes for assessment. This would almost certainly have to involve restraint and deprivation of liberty.

The hearing was before Mr Justice Peel on 8th February 2022 (COP 13883671) and lasted a little over one hour.

The hearing

There were two advocates in court: Ulele Burnham acted for the local authority and Emma Galland for the hospital trust.  

There was no legal representation for Mr M, nor was he in court himself.  The judge said, right away, as soon as this became apparent: “I’m highly unlikely to do anything of substance today, without him being represented”.

There were no position statements (since the case had been fast-forwarded to the ‘urgent’ list) and on the basis of what I heard in court it was very unclear what the evidence was to rebut the presumption that Mr M has capacity to make his own decisions about whether or not to allow clinicians to examine his legs. I think the court determined that whatever the evidence was,  it was sufficient to give the court “reason to believe” on an interim basis that Mr M lacks capacity in this matter (s. 48 Mental Capacity Act 2005).  But the judge also commented that “the Official Solicitor may have a view about the capacity evidence”. 

There was also no medical evidence before the court.  Although the hospital trust was a respondent, they made clear that the hospital had last seen Mr M at the end of October 2021, when he was discharged without any assessment having taken place (because he refused it), with care in the community and outpatient appointments offered.  There was no more up-to-date medical evidence they could provide about the state of his legs.

The judge made it clear that, despite the “serious concern” about Mr M’s health raised by Ulele Burnham (for the local authority), he would not make substantive orders today. 

Judge:  I understand you want to achieve an assessment as quickly as possible.  For me to be satisfied with that, there has to be some opportunity for Mr M through the Official Solicitor, to make representation.  I find it hard to see on the basis of what I’ve read that I could do otherwise. The Official Solicitor needs to be present for these sorts of discussions doesn’t she?

Burnham: My Lord, I would say not.  She’ll be on notice for this application.  It should be rare for this to happen, but it is the concern of the local authority that he should get to hospital quickly.

Judge:  What does ‘quickly’ mean? This has been going on since October.  I appreciate the situation is getting worse, but are you telling me that this very second Mr M needs to be taken to hospital for assessment, with a deprivation of liberty as part of that, since it appears, based on previous events, that he would not go willingly.  These are very dramatic and significant orders to make in his absence.

Burnham: The problem is that the condition has been getting worse. There is a risk of amputation. There is a risk of death.  The local authority seeks as best it can to do its duty and it simply doesn’t know how serious the position is.

Judge: That’s exactly the problem you are dealing with.  You were right to bring this application, but you don’t have medical evidence, so you’re dealing with this slightly in a vacuum, and that makes it very difficult for you to put forward any cogent evidence that if he doesn’t have an assessment this afternoon it might have life-changing consequences.  It’s the absence of up-to-date clinical evidence, combined with the absence of Mr M who isn’t here and isn’t represented, that prevent me from making the orders you are seeking today.  I can’t see how I could be persuaded to go down that route.

The judge went on to detail what could be done today: directions for medical evidence from the hospital, appointing the Official Solicitor as a litigation friend for Mr M, and making arrangements to bring the case back to court “in pretty short order”.  

Ulele Burnham suggested provision of a “transition plan” in time for the next hearing. The judge asked what that meant.  “How he’s going to be conveyed or transported, and are we countenancing restraint, and what would we do if he physically resists”.  “That seems sensible to me”, said the judge.

Other matters to address before the next hearing include: What would the assessments entail?  What restraint might be necessary not just for “conveying” him from home to hospital, but also to overcome any resistance to having his legs assessed? What treatments might be possible?  What about his future care and residence?  And I think a third party disclosure order was made (or perhaps only discussed and postponed for consideration at the next hearing) concerning Mr M’s medical records.

The judicial decision

In a closing statement, Mr Justice Peel said it would be “wholly inappropriate to make substantive orders of the sort requested by the applicant in the absence of representation of the patient and in the absence of up-to-date medical evidence.  It is apparent to me that the furthest I should go is to make directions enabling the case to be brought back next Monday, by which time the Official Solicitor will be engaged. Once the Official Solicitor is involved, I suspect this case will take shape rapidly.

He pointed out that if there were to be “a true emergency” before the date of the next hearing, then it could be brought back in the proper way for an out-of-hours or emergency hearing.

The next hearing is listed for 10.30am on Monday, 14th February 2022.

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

Four commentaries on Re PH before Hayden J

By Sam Green, Daniel Clark, Claire Martin and Imogen Goold, 10th February 2022

Editorial introduction by Celia Kitzinger

Four commentators give their impressions of a case in the Court of Protection before Mr Justice Hayden (Case No.1354439T Re PH). 

We’ve already published a blog post about the most recent hearing (“A home not a hospital”) and about several earlier hearings in this case.

It came back to court in 2022 (after a long history of previous hearings) on an urgent basis, because PH, who has an acquired brain injury, was refusing to allow himself to be fed via his feeding tube.  He said he’d “had enough”, having lived in hospital – despite being ready for discharge – since 2019.  He was desperate to live somewhere that felt like a home and to have some privacy.  

The Health Board had applied for a declaration either that PH had capacity to decide for himself whether or not to accept tube feeding, so his decision should be accepted even if it led to his death; or alternatively that he lacked capacity to make this decision but that it was not in his best interests to force-feed him contrary to his wishes since this is both medically counter-indicated and also “demeaning and traumatic” for PH. 

Towards the end of the hearing on 7th February 2022, the Health Board withdrew that application.  It was no longer necessary because PH had decided to resume his feeds, and had done so since being taken to see the new home to which he will move towards the end of February.

So, PH has a hopeful future.

Reports of the case (in earlier blogs –  in reverse date order: “A ‘secret’ hearing on life-sustaining treatment”;  “Capacity to refuse intensive care”, “When academic theory becomes reality”, “Delays in finding an acquired brain injury placement”, and “Inviting family into the decision-making process” had caused considerable interest.  It was very unfortunate that the hearing on 2nd February 2022 had not appeared in any court listings (hence the term ‘secret’ in the title) and I managed to attend only because I was coincidently in Newcastle (for a different hearing) and able to make it to the courtroom on time.  

The hearing of 7th February 2022 did appear in the listings and although seven (I think) observers managed to attend, there were problems for others who did not (at least four, to my knowledge).  The hearing was originally listed for 10.30am and appeared from the listings to be attended (i.e. not marked as “hybrid” or “MS Teams”) such that observers would only be able to attend if they went to the physical courtroom.  In fact, I’d heard (unofficially) that it might actually be hybrid and I told potential observers about this.  We then heard that the hearing would be delayed until 12.30pm, and then, at about 11.30am, one of us received an email from court staff saying it was being moved earlier again, maybe as soon as 11.45, though in fact it started  at 12noon.  The effect of shunting the hearing from 10.30am to 12.30pm then back to 12noon that some of those who’d hoped to observe in the morning but had afternoon appointments found they were unable to observe; but others, who hadn’t been able to observe in the morning, were excited at the possibility of observing the hearing once we knew it had been rescheduled for the afternoon.  Unfortunately, though, late emails to the RCJ staff (who ask for requests to observe to be with them by 9.30am on the day of the hearing if possible) did not yield responses – and I didn’t learn this from some people until it was too late.  The video administrator and Mr Justice Hayden’s clerk did everything they could to help with the situation (thank you!), and I was pleased that so many observers did gain admission, although obviously disappointed for those who did not receive the link to the hearing on time.  As is sadly often the case, the court’s aspirations for transparency flounder in practice, despite everyone’s best intentions.

Four reflections on the case in the #NotSecretCourt follow. The first is by Sam Green, a barrister who did not observe the hearings but chose to comment on a blog post about the hearing of 2nd February 2022, and we reproduce his commentary here. The second is by Daniel Clark (a paid carer); the third by consultant clinical psychologist Claire Martin; and the fourth by legal academic Imogen Goold. These latter three commentators all observed the hearing on 7th February 2022.

1. Competing aims, by Sam Green

Overall, there is a sense of competing aims among the legal professionals involved in this hearing.

The lawyers are seeking decisions from the judge. 

The judge,  perhaps recognising that no decision he can make is likely to affect the outcome for PH, is attempting to use his authority to mediate the best outcome for him. 

It is an excellent example of how the CoP can work best and how it differs from traditional courts.

It is also a reason it is a worry that CoP decisions become precedents despite the repeated assertion that every case rests on its facts.

This case follows a string of cases which have at their heart a similar theme: faced with a situation P cannot control,  they react by refusing nutrition. Judicially these cases boil down to whether they are simply refusing nutrition because they’ve had enough or because they want to force another to act differently. The former is generally capacitous the latter generally not. 

Above all,  the theme of these cases is agency – people who feel agency has been robbed from them asserting it in the most extreme way possible. In this case “He feels he has been a creature of the state” and he is “understandably…flexing his muscles

Hayden J encourages them to recognise that they do have agency and to help them exercise it.


I made a video about another case heard by Hayden J in a similar legal situation which can be viewed here.

I said before a ruling couldn’t affect the outcome for PH. What I meant was that if the judge held PH had capacity, then he can refuse nutrition. If the judge held that he did not have capacity it was accepted that there would be no attempt to force nutrition on PH so, practically. what difference would it make.

Instead, Hayden J chose to use the time more effectively, narrowing differences, cajoling, encouraging, arranging practical progress.

My favourite bit in the report from the 2nd February 2022 hearing is this:

JudgeHas the plan been put before PH?

HillmanNo.

               (c. 20 second silence)

Hillman: Your Lordship is asking me why not?

JudgeNo. I’m letting the question float through the ether. Why is it that everyone knows the plan except the person it most affects?

Sam Green is a barrister and mediator at Normanton Chambers.

2. Respecting the thoughts and feelings of P, by Daniel Clark

Although I had not observed any of the former hearings in this case (this was only the second time I have observed a Court of Protection hearing) I was reasonably familiar with the situation before the hearing began. I had read previous blogs about this case which, in chronological order, can be found: hereherehere, and here. Given the content of the previous hearings, I am so glad that I had the opportunity to observe a hearing with such a positive tone.

Celia Kitzinger had contacted me with the details of this hearing around 11am, which had been listed for 10.30am, but which she’d heard was actually starting at 12.30pm.  I’d not received any response by 11:35, so Celia forwarded my email to a named member of the court staff she thought might be able to help – and also told me that she’d heard more recently  that it was due to start earlier. This led to a mild panic on my part as I rushed around ensuring that I had everything I needed whilst waiting for the link to arrive. Thankfully, I was ready on time, and the hearing started at midday.

In contrast to the first hearing I observed, which was exclusively online, this hearing was hybrid. Mr Justice Hayden, Counsel for the Health Board (Roger Hillman), and Counsel for the Official Solicitor (Victoria Butler-Cole) were all present in the courtroom. Joining the hearing remotely were PH and a psychiatric nurse. There may have been other parties who I missed, as I was unclear who everyone who was joining the hearing remotely was. In the hearing that was exclusively virtual, parties to the case had their role in the case posted next to their name. That did not happen in this case. 

Being a hearing that did still rely on technology, I did naturally have a technological difficulty of my own. I struggled to hear the initial exchanges, as the audio was fairly faint. This did, however, resolve seemingly of its own accord, and I was able to both see and hear the hearing clearly.

Background to the case

PH is a man in his 40s who, in 2016, drank highly corrosive hydrogen peroxide, resulting in oesophagectomy (removal of part of his oesophagus), splenectomy (remove of his spleen), a tracheostomy and colostomy, and the insertion of a PEJ through which he receives nutrition and hydration. Following a seizure in 2019, PH was diagnosed as having an acquired brain injury. He has been assessed as lacking the capacity to make decisions about his care and residence. 

In the last hearing, on 2nd February 2022, PH had been refusing nutrition (not hydration). An interim placement had been found for him but he wanted the opportunity to visit it himself to see whether he liked it. Hayden J made an order that PH should be taken to see the house. 

Bringing PH to the centre

The hearing began with Counsel for the Health Board (Roger Hillman) being asked to describe what had happened so far with regards to acquiring a place for PH to live, in order to help observers to understand the case. I was grateful for this, and it showed to me that the Court of Protection is serious about its commitment to open and transparent justice.

Whilst listening to the summary, it struck me, once again, that it is a truly intolerable situation for somebody to be living on a surgical ward for a year-and-a-half despite being medically fit for discharge. This was brought home to me by Hayden J’s observation that “we’re giving this man the first opportunity for privacy in a year-and-a-half“. I cannot imagine how this total lack of privacy for so long would have felt. 

Despite all the previous setbacks, somewhere has been found that will allow PH to have his wishes met. This even extended to ensuring that there was somewhere else for his care staff to stay, which was still in the house but also allowed PH his own space. They could be “out of his hair“, as Counsel for the Health Board remarked. 

It was reported that upon visiting the house that it was proposed he would temporarily move to, PH began once again to accept nutrition via his PEJ tube, having chosen not to for 10 days prior. He was actually going to have a feed prior to the visit but decided not to, due to the risk of his stoma leaking on the journey. This was a clear indicator that PH was happy with this new house, and he has continued with his feeding regime since. 

What really struck me about this hearing was the fact that PH’s thoughts and feelings were brought to the fore. There were repeated references to the fact that this would only be an interim placement because PH wanted to be close to home, to his family and friends. In doing so, something important to PH was recognised, and that guided decision making. This placed him front and centre, and acted as a reminder of the importance of an individual’s own views when best interest decisions are formulated. 

Community access was also clearly important to PH. Hayden J remarked that moving to this house would allow him to get a new hairstyle that he wants, which I thought was a good reminder of the small pleasures that have been denied to PH but that so many of us take for granted. I also reflected at the time that this demonstrates how well Hayden J has come to know PH, beyond his support needs and the importance of being close to home. 

Concluding remarks

My first care job was in neurological rehabilitation, supporting people to work towards their eventual discharge. When thinking about the next step, it is quite easy to focus solely on where can meet somebody’s needs, and how close they would be to their family (if they want to be). It is, however, so important to see beyond those issues – as important as they are. 

I distinctly remember one individual, an avid cook, who told us how important it was that she could be close to her favourite supermarket. This way, she could go out and get her favourite foods with ease. Ordering online, she told us, just isn’t the same – you never know what you’ll miss, what new tastes will pass you by. By chance, I was actually in that chain of supermarket a few days after she told me this, and I remember thinking at the time how these simple acts become so much more important when you can’t do them. As a young and inexperienced carer, this experience made a significant impact on me. 

Overall, I found observing this hearing to be very moving, as PH’s next steps were decided upon in a way that included him. His thoughts and feelings had been brought to the fore, and he was recognised as the expert in his own life. 

Towards the end of the hearing, PH gave Hayden J a thumbs up to signal that he was happy with the direction of travel. After the challenges of the last few years, I feel extremely relieved for him. 

Daniel Clark is a paid carer.  He is also deputy director of Backbench, an unaffliliated open platform blog that publishes a range of articles about current affairs. He has recently completed an MA in Political Theory. He tweets @DanielClark132

3. A hopeful resolution, by Claire Martin

I haven’t observed any of the other hearings for PH. I have read the blogs about his case and the media reports of Hayden J ‘slamming’ the Health Board for their lack of adequate care. I managed to get the link for this hearing after being unable to observe a different hearing today and I was really pleased to be able to join at what was a very hopeful resolution for PH. 

PH was on screen throughout this short hearing and he looked to me to be relieved about the current situation – which is that a suitable place to live (off the hospital ward) has been found for him as an interim measure, whilst the search for a permanent home continues.

For 10 days (until 4th February) PH had been refusing nutrition: it seemed he had lost hope.  Counsel for the Health Board mentioned that PH had a history of refusing nutrition and Hayden J corrected this in relation to the current situation:

“… denial of feeding had been the history of this case – but this time the motivation was different – he’d run out of steam, lost a will …” [Judge’s emphasis]

I notice in a previous blog about this same case, by Gaby Parker, that P had been given a diagnosis of ‘emotionally unstable personality disorder – impulsive type’, exacerbated by his brain injury. There is always a high risk for people (given this label) that all of their actions and takes on their experiences are put down to such a diagnosis (known as diagnostic overshadowing) so I was very pleased to hear Hayden J say (in relation to Health Board efforts to find a place for him to live) that he didn’t “doubt the energy or sincerity of the effort [to find somewhere suitable] but nevertheless it was not entirely suitable for P and his resistance to it was not entirely unreasonable”. 

As Gaby Parker had reflected in her previous blog:

I wondered whether P’s complex psychological needs (which included emotional and cognitive issues as well as self-harming behaviours) had led to an over-shadowing of his ‘normal’ distress in the face of unwelcome healthcare interventions and his right to have an opinion about these. There was a sense that he had been silenced in his care, both literally and metaphorically; I felt distressed reflecting on the many ways that being silenced in this way would be experienced by any person who had been through significant trauma. It was apparent that P’s opinion had not been weighted highly in decisions made about him …. .”

What struck me the most about Hayden J’s interaction with PH (and I have noticed this before when observing the Vice President’s hearings) is that he treats ‘P’ in each case as an individual and not a diagnosis. 

The judge does not seem to seek to attribute P’s views and behaviours solely to any diagnosis, especially psychiatric/psychological diagnosis. He ensures that the relational interplay between the health and social care organisations and each P is noted. This means that ‘behaviour’ is not located in P (or conversely only in the clinicians/teams/organisations) but in the relationship between them. Given the location of power in a patient-to-system dyad, I think this is vital in CoP cases. It conveys to each person at the centre of a case that they matter as a person in the CoP. 

I wish PH all the very best for the next part of his life and hope that the system continues to listen to him, as Hayden J has managed to listen to him throughout his lengthy court case. 

Claire Martin is a Consultant Clinical Psychologist, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Older People’s Clinical Psychology Department, Gateshead. She is a member of the core group of the Open Justice Court of Protection Project and has published several blog posts for the Project about hearings she’s observed (e.g. here and here). She tweets @DocCMartin

4. A constructive approach, by Imogen Goold

This was my first experience of watching a COP hearing, and I was struck by the collaborative, constructive approach taken by all concerned. There was clearly a genuine commitment on the part of everyone involved to ensure Mr PH’s wishes were understood and respected, and that he was found accommodation that was not merely sufficient, but a home where he would feel happy and comfortable. 

I was also struck by the thoughtfulness with which Mr Justice Hayden approached PH’s motivations for refusing feeding. 

When Mr Hillman suggested that Mr PH was using refusals to exert some control over his situation, I was impressed by the fact that His Honour gently, but firmly, pointed out that while that was his motivation for past refusals, the current one was of a different character. As he said, PH wasn’t trying to manipulate his situation or press for his wishes to be met, but this time instead he had ‘run out of steam’ and lost his will. This was an important insight, because it drew attention to the fact that this refusal evidenced something different – his loss of hope, which was perfectly understandable given the parlous situation in which he found him. It was important because it meant the focus was on whether, if PH’s wishes were fulfilled, he might turn a corner. 

And, in fact, it turned out to be the case. Once suitable housing had been found, he had agreed to feeding, and he was clearly feeling more positive about his future. This, of all that I saw, really impressed upon me how the constructive approach and the attention paid to his wishes, despite his lack of capacity to make his own decisions, led to an outcome with which the Official Solicitor understandably said she was ‘delighted’ to agree.

Imogen Goold is Professor of Medical Law at the University of Oxford. She tweets @ImogenGoold

Photo by Jeremy Bezanger on Unsplash

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

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