A bundle is a collection of documents that are relevant to the decision that the court is being asked to make. As Kyle Squire, then a barrister at 5 Pump Court Chambers put it in a blog for the Open Justice Court of Protection Project, “‘Bundle’ may be a foreign term and may seem daunting at first but it means nothing more than paperwork: something we are all familiar with and work with in our day to day lives”. Bundles can be digital (usually pdf) or paper.
Practice Direction 13B states that the applicant must prepare the bundle but “[w]here the first named respondent is P [the protected party], and he or she is represented by the Official Solicitor, the responsibility for preparing the bundle will fall to the next named respondent who is represented” (§3.2). In turn, that bundle “must be lodged with the court not less than 3 working days before the hearing, or at such other time as may be specified by the judge” (§6.3).
Not complying with this Practice Direction has consequences: “Failure to comply with any part of this practice direction may result in the judge removing the case from the list or putting the case further back in the list and may also result in a “wasted costs” order in accordance with CPR Part 46.8 or some other adverse costs order” (§12).
I’ve often heard judges complain about the bundle, not only because it’s arrived late but also because the pagination of a paper bundle doesn’t align with the digital version, or it’s become too large and unwieldly with extraneous material.
The hearing I tried to observe on Monday 2nd June 2025 was unique to me in that it’s the first time I’ve seen a judge placed in a position where she’s needed to complain about a bundle being filed just 14 minutes before a listed hearing.
This case (COP 12999111) was before Her Honour Judge Williscroft (incorrectly titled as His Honour in the online list) who was sitting remotely (via MS Teams, not Cloud Video Platform as the online list said) at Chesterfield Civil Justice Centre.
I’d had some problems getting the link – none of my emails were acknowledged and, in a classic case of sod’s law, my phone had decided it must be updated immediately before the listed time of the hearing. This therefore meant I had no way of calling the court.
I was just about to give up and get on with my day when I received an email, at 10:09, with the link and the message “please join now”.
When I joined the link, the only people present were the court clerk, Rory O’Ryan, a barrister, and Poonam Dadhania, a paralegal. Unfortunately, I don’t know who they acted for because nobody said. I expected to find out when I was sent the position statements but, at the time of writing, I’ve not received them.
Rory O’Ryan asked me to confirm I’d received the Transparency Order – I had and was reading it as he asked. I also took the opportunity to say I’d requested the judge’s permission for position statements to be shared, and I saw him take a note of that.
The court clerk said she’d let the judge know we were ready. So far, so ordinary, except there were so few people on the call. The Transparency Order listed four parties; the applicant, NF (the protected party), and three respondents – Leicestershire City Council, NHS Leicester, Leicestershire and Rutland Integrated Care Board, and LF.
I knew there simply weren’t enough people on the call for that number of parties but the person I assumed to be the court clerk had already confirmed everybody was present.
As I was becoming increasingly confused, and wondering whether I’d been sent the wrong Transparency Order, HHJ Williscroft joined the link at around 10:14.
This is what happened, reproduced from my contemporaneous notes. They may not be completely accurate (we can’t record hearings) and, where I’m not sure what was said, I’ve either said so, or used an ellipsis (…) to indicate that.
Judge (J): This case is listed before me for an hour but I got the bundle at 9:45am. As a result, I am not proceeding. It is unrealistic and unfair to expect me to read a bundle in 14 minutes. So, I’m adjourning the case to another hearing. I understand Mr Clark would like to observe and have some information. I have no difficulty with that … What is the explanation for not providing a bundle?
Rory O’Ryan (RoR): Your Honour this is a situation where matters have been developing. For Your Honour’s benefit and the benefit of the observer, these proceedings relate to Mr [NF] who is in residential care. The residential care provider wishes for him to move on to another placement. It may be that your honour is not aware – there is a further notice…
J: How would I be aware since I haven’t had a bundle?
RoR: I acknowledged within my submission the court may not be aware. It is in the position statement of the local authority and ICB.
J: I haven’t seen the local authority’s position statement.
RoR: The local authority has been attempting to obtain a new placement for Mr [F] to go to –
J: – So that’s your explanation?
[at this point both the judge and Rory O’Ryan were trying to talk at the same time].
RoR: I do not wish to speak over Your Hhonour. Can I just finish the point?
J: Do.
RoR: Confirmation [of funding] from the two public bodies was only received on Thursday and Friday last week. So, the Official Solicitor and ourselves were not in a position to know what order to submit to the court…I accept that an earlier version of the bundle might have been put forward but that wouldn’t have contained the intention to confirm the funding…Perhaps it was an error of judgement on the part of my instructing solicitor and myself, insofar as I was involved. Your Honour, the court has mentioned the lack of the bundle as the primary difficulty. In what I’ve said just now, I’ve also set out the difficulty we and the Official Solicitor were having in terms of identifying what our own position would be. I wasn’t aware the current proposed placement was on the table. I hope that assists in explaining the position.
J: So, will you be in a position to have things organised by 3pm on 12th June? I assume you would want to move him quickly.
RoR: Your honour…the placement is…
J: We’re having a hearing now. I told you we’re not having a hearing. My suggestion to you is 3pm at 12th June.
RoR: I expect the parties will be ready to attend on that occasion. I can’t speak to the availability of the particular advocates as to their personal availability and [I think this is what he said -] to the extent that the court wishes to check our availability –
J: I don’t. That’s the date I’ve got on offer for you, my diary is chock-a-block.
RoR: Can you repeat [the date]?
J: 12th June at 3pm
RoR: I anticipate the other parties will be in a position…. There is a care plan which was updated as recently as 28th May which the applicant and ICB are in agreement with. There needs to further work as to conveyance, and the issues of transition and conveyance are connected to one another. Quite a detailed conveyance plan was created for another transition… The ICB are leading on the issue of conveyance.
J: So those matters could be resolved…ready for 12th June. Mr Clark can you attend on the 12th June?
[I confirmed I could]
J: And you’d like the position statements. Is there any difficulty with that from the applicant?
RoR: No Your Honour [I think RoR corrected the judge here by saying he didn’t represent the applicant. I assume from what he was saying that he represents the local authority] … If I can confirm, should we send these to Mr Clark directly?
J: Well I imagine you won’t have his email address but you can get it from my clerk, and that can be included in the order.
RoR: Is that for all of the parties?
J: Yes. Is there anything further?
RoR: The standard authorisation expires 7 days from now. I assume the court will be satisfied with me including in the order that it will be extended by a further 7 days?
J: Yes do that. Is there anything further?
RoR: No, Your Honour.
J: Then I will see you all at 3pm on 12th June. Good bye.
The judge and Rory O’Ryan seemed to leave the link at the same time, at just past 10:20am.
Reflections
After reflecting on this hearing, I felt a great deal of sympathy for Rory O’Ryan. He was, so to speak, up against it: the only barrister and therefore the only person in the judge’s (very hot) firing line. To say I didn’t envy him would be an understatement.
I don’t know where the other parties were – nobody acknowledged their absence so I assume everybody but this party had been excused from attendance. I had the distinct impression that the judge had only appeared on the link so she could give somebody a telling off, and I couldn’t help but wonder whether the reason was because I’d asked to observe. Perhaps if I’d not, this matter would have been dealt with in writing. After all, removing the case from the list is a potential consequence of not complying with the directions of the Practice Direction I referenced at the start of this blog but a reprimand is not.
That being said, the failure to file the bundle with the court, meaning that the judge could not be properly prepared, resulted in an hour of the court’s valuable time being wasted.
I do understand the reasoning given for not filing the bundle at the end of the previous week. However, that strikes me as a decision that’s so obviously wrong that I wonder why it was the course of action chosen. (Maybe late filing of bundles is much more common a problem than is apparent to observers. Maybe many judges have just become resigned to it and we are not exposed to their concerns.)
I always tell my undergraduate students that it’s better to come to a seminar having done half the reading than not to come at all. Watching this hearing, I couldn’t help but think that this was a bit like somebody not having done the reading, not attending the seminar, and hoping to still do well in the exam.
Would it not have been better to file an incomplete bundle and then update the court with developments at the start of the hearing? I’ve seen plenty of barristers say something like, “document X isn’t in the bundle in front of you because it was filed late”. Why couldn’t that have happened here?
Although I have yet to receive them, I’m grateful to the judge for ordering that I should be provided with the position statements. Hopefully that will make it much easier to follow the hearing when this case returns to court at 3pm on Thursday 12th June
Daniel Clark is a member of the core team of the Open Justice Court of Protection Project. He is a PhD student in the Department of Politics & International Relations at the University of Sheffield. His research considers Iris Marion Young’s claim that older people are an oppressed social group. It is funded by WRoCAH. He is on LinkedIn, X @DanielClark132 and Bluesky @clarkdaniel.bsky.social.
I have observed a number of Court of Protection hearings but have never blogged one before. I chose to blog about this case (COP 14265088 heard by Lieven J on 6th May 2025 in the Royal Courts of Justice, observed via MS Teams), because firstly, it struck me as the most ‘P’-centric case I have observed, and secondly, it was discussed whether a decision over an important point of law (whether P had capacity over where they lived) was needed in this case.
A brief overview of the case
The case involved an eighteen-year-old female who had been living in supported living for over a year. Prior to this placement, there had been difficult times whereby P had been in hospital under the Mental Health Act. P has a love for art and the hope is for restrictions to reduce, to enable her to attend college independently, and gain greater autonomy and independence generally. Reductions had already commenced, for example one staff member was now accompanying P in the community, reduced from two. There is disagreement between parties regarding P’s capacity to decide where she lives and how the expert report is to be interpreted.
The hearing
Everyone agreed that restrictions should be reduced and eventually removed, due to the widely acknowledged progress that P had made. It became clear, however that a road map for reductions was not going to be available by the end of the hearing because a restriction-reduction meeting was scheduled for the 13th of May (a week later). Mrs Justice Lieven made it clear that a plan was required with dates, so that there was a clear path to follow and for P to know the trajectory and the requirements for each step. Lieven J stated that the focus must remain on P and that the care plan should no longer be such as to constitute a deprivation of liberty by the autumn – and this should be reflected in a final order. A holiday abroad and attendance in the community alone, including college, is the plan for end of summer/beginning of autumn. The social worker said this was “not unrealistic” and would find out information regarding colleges nearby. Counsel representing P (Francesca Gardner instructed by the OS) also highlighted the importance of college and independent time.
Lieven J continued to emphasise the need for momentum moving forward and ensuring that reducing restrictions occurred between hearings, highlighting that risk aversion could delay progress without a judicial nudge, detrimentally impacting P. Counsel for P was told to apply to the court for a hearing if there was a lack of progress so that a hearing could be listed swiftly to prevent delay. The issue of delays or inaction between hearings appears to be an issue not isolated to this case, it has been present in many other cases I have observed and read about.
Counsel for the Local Authority (Ben McCormack) raised the issue of P’s capacity and how the expert report should be interpreted. It was unclear to me why there was disagreement between parties, I do not have the report, and it was not discussed in detail but appears to state that when P is going through a difficult time, she may lose capacity to decide where to live, but when stable and well she does have capacity. The disagreement appeared to concern whether a clear decision needed to be made regarding capacity, should a residency issue arise in the future. It was highlighted by counsel representing P that she was happy at the present placement with no desire to move elsewhere.
Lieven J raised concerns regarding a hearing to decide capacity, namely that it would cause delay, as it could not be heard until October, which would affect the whole trajectory of the case (as discussed previously, it is hoped that the care plan will be the least restrictive possible by the autumn). Lieven J decided that in this case a hearing to decide on capacity was unnecessary; the plan was to move forward to removal of restrictions, and a change in accommodation was theoretical and therefore, determination of capacity was considered not only detrimental to P but a waste of public funds. Lieven J suggested that there could be a vague declaration within a final order to come back to court should the theoretical issue over residency become reality. This appeared to be well received by counsel for the local authority.
The parties were invited to draft a final order with that in mind. If, however, no agreed decision could be reached, then an October hearing would need to be listed. I have requested the order and was informed that it had not been finalised but would be forwarded to me in due course. I have not received it to date (30th May) so I’m unsure if a decision has been reached or whether a hearing will be listed for October. Lieven J emphasised how this would not be in P’s best interests describing it as a “holding pen”. The purpose of the Court of Protection is to act in the best interests of the protected party, and it raises the question on whether risk aversion is leading to delays counter to P’s best interests.
Reflections
This was the first hearing I have observed before Lieven J and I was struck by her holistic, personable approach; her management of the case appeared to be very much in P’s best interest. It was discussed that she had visited P and viewed her art, describing P as very talented. I understand that with delays and time pressures that judges cannot visit the protected party in every case but after observing the hearing I was left thinking about how important this may be. The protected party after all is a person, who has likes, dislikes, talents and personality that may not be fully conveyed through written documentation. It also highlights the importance of ensuring that P’s wishes and feelings are heard, so that P can be heard as part of the decision-making process.
Rebecca Pritchard is a final year law student at University of South Wales, interested in the treatment of vulnerable people and their families in the justice system.
In May 2024, a year ago, Amanda Hill blogged about this case: “The protected party in this case (“L”) is a man in his twenties with “significant learning disability”, autism and complex physical disabilities. He had been living at home with a care package in place until July 2021, when his care package broke down and he was moved to a new placement after an application by Swansea Bay University Health Board to the Court of Protection. This was supposed to be a temporary emergency placement, but L is still there nearly three years later because, over the years, suitable alternative arrangements have not been found.”
L is now living in a second care home (H), since his place at the first care home also broke down (May 2024). It is now almost four years since the start of the proceedings and the search for a more appropriate place for L to live is ongoing.
The current care home is some one and a half hours’ drive from L’s home town, family and friends. In a hearing on April 19th 2024, the judge said “Community is of magnetic importance to L, he is a (home town) boy.”
Yet, according to the Health Board responsible for commissioning his care, it seems there is no suitable current alternative place for him to live that is nearer to his family and friends in the town where he grew up and is part of the community. L’s mother and father disagree and have clearly expressed their dissatisfaction with the efforts that the Health Board says they have made to find somewhere else. They assert there are alternatives nearby.
The case has been marked by conflict between the Health Board and L’s family, in particular his mother (called C in the published judgments, the initial I will use for her in this blog), who has been very unhappy with the Health Board’s discharge of their duties. There have been counter-allegations from the Health Board and care agencies, about C. Findings of fact have not been made and allegations have not been proved. The 2024 appeal judgment states (at §14) “In the Health Board’s position statement for that hearing [May 2023] they questioned whether a fact finding hearing would be necessary”, and at §16 (ii) “On that basis, it was not necessary to engage in a five-day fact-finding hearing”. The original judge acknowledged (in the 2023 judgment ) “I have never lost sight of her [L’s mother’s] love or strength of feeling and determination to do all that she can to secure what she feels is the best outcome for P.”
C, and L’s father, V, assert that the place where L lives now, that has been deemed suitable (at least in the interim) is, in fact, ‘dangerous’ and that they have needed to raise safeguarding alerts.
There has been a subsequent hearing this year, on the 31st March 2025, at which HHJ Porter-Bryant made a further 12-month residence order for L to stay at this same care home. C has now sought permission to appeal that court order.
The hearing I observed (on the 12th May 2025, remotely at the Royal Courts of Justice before Mrs Justice Morgan) was to determine whether C would be granted permission to appeal that most recent judgment.
How to appeal a decision
Information on the government website about applying for a one-off decision from the Court of Protection states:
“Appeal a decision
You must ask for permission to appeal if there was a hearing. Download and fill in the appellants’ notice (COP35).”
C completed and submitted the appellants’ notice (also called ‘notice of appeal’) and will have paid the £230 to do so.
The Appellants’ Notice has guidance at the end which says:
“Permission to appeal will be granted only where: • the court considers that the appeal would have a real prospect of success; or • there is some other compelling reason why the appeal should be heard.”
It also notes:
“What are you asking the appeal judge to do? You need to explain in section 4.3 what order you are asking the court to make. Please be specific about what you are asking the appeal judge to do. The appeal judge has the power to: • affirm, set aside or vary any order made by the first instance judge; • refer any claim or issue to that judge for determination; • order a new hearing; or • make a costs order.
Grounds for appeal and arguments in support An appeal must be based on relevant grounds (i.e. reasons for appealing).
An appeal judge will only allow an appeal against a decision that is either wrong or unjust because of a serious procedural or other irregularity in the proceedings before the first instance judge.
Please set out briefly why you are appealing the judge’s decision. Remember that you must not include any grounds for appeal that rely on new evidence (that is evidence that has become available since the order was made). You may not produce new evidence in your appeal unless the court allows you to do so.
The court will tell you if permission is granted, refused or if a date has been fixed for a hearing of the application for permission.”
Mrs Justice Morgan said that a decision had been made to hold a hearing (rather than deciding the permission to appeal ‘on the papers’) because “in this particular circumstance, I and the vice-president [of the Court of Protection, Theis J] decided that the matter should be heard by way of an oral hearing. It came to me because I am the presiding judge for the part of the country …. I decided [it should] to come to me orally not on the papers, partly because the proposed appellant, C’s, papers are not straightforward to follow. And there is a hearing listed on 20th May which would be in jeopardy [if the permission to appeal was successful].”
C was therefore the appellant in this hearing, representing herself. The first respondent was Swansea University Health Board, represented by Emma Sutton. The second respondent was L, represented by Nia Gowman via his Litigation Friend (who I think is someone from Mental Health Matters). L’s father (V) is also a party and was present at the hearing, and I think is represented, though the judge noted that his representative was not present.
The hearing
The judge explained the five grounds on which permission to appeal was sought:
Ground 1: L was placed at the relevant care home without relevant assessments being completed to reside there in the longer term.
Ground 2: A closer location in a placement nearer to the family home is just a few moments from home and had not been considered. Other viable options were also contended.
Ground 3: The Health Board committed perjury, making unfounded allegations against the appellant and detracted from L being cared for at home without regard to his Article 8 rights to respect for private and family life and home.
Ground 4: The recommendations of the Independent Social Worker were not taken into account sufficiently or at all.
Ground 5: L constantly asks to return home to live with his mother and this was given insufficient weight or dismissed out of hand.
Morgan J took time at the start to deal with the administration of the hearing. I thought she made respectful efforts to ensure that C, as a litigant in person, understood the process that the judge was proposing, allowing her to contribute her thoughts about those proposals [my notes are typed contemporaneously as we are not allowed to record the hearing, so they are as accurate as possible, given that I do not touch type] :
Judge: We have until 1 o’clock – [this is] your appeal. I have read the documents from the Health Board and the second respondent and your documents and I had a message from you on Friday to say that you will find it helpful if you could have a break in the middle of your submissions. Because we have limited time available, and I have seen what is said by other parties, I propose that you have the bulk of the time before 1 o’clock to say whatever it is you want to say about permission to appeal.
It’s now 11.45. If I work on the basis that you should have until half past twelve to make your arguments and that Ms Sutton and Ms Gowman should share the remaining time from 12.30 and you may have 5 mins or so at the end to respond to what they say. Then I will come back at 2pm with my decision. [C] does that work for you?
C: Yes and I don’t mean to appear rude but I will be looking at my notes
Judge: That’s perfectly understandable – would it be best to schedule in a break or would you like to say when?
C: Thank you – I will just say and I hope I won’t need a break.
Fair treatment is a fundamental principle embedded in the judicial oath and is, therefore, a vital judicial responsibility. For many judges this will be how they will approach much of the guidance provided in this Bench Book. For most, the principles of fair treatment and equality will be inherent in everything they do as judges, and they will understand these concepts very well. The Bench Book seeks to support and build on that understanding. It is not intended to be prescriptive, but simply to inform, assist and guide.
It includes guidance for judges to assist litigants in person with understanding the court process and how to make reasonable adjustments and its foreword explains its purpose:
The Equal Treatment Bench Book (ETBB) is a key work of reference. It is used daily by the judiciary of England and Wales. It is referred to in their training courses and commended by the appellate courts. It is admired and envied by judiciaries across the globe. Since 2018 it has been published online and, whilst its focus is primarily aimed at all judicial office holders and is written by judges for judges, it has also come to be regarded as an invaluable resource for litigants in person and to many other people connected directly or indirectly with issues relating to equal treatment.
I thought Morgan J was fair to C in this appeal hearing. I can’t speak to how she has been communicated with by the other parties prior to this hearing, or previously across the very lengthy proceedings, but at this hearing I observed I thought the judge showed respect and concern for C as a litigant in person, and helped her to understand both the process and the content of the hearing.
C’s submissions as a litigant in person
C presented her case eloquently and with clear concern for the wellbeing of her son. She maintains that there was inadequate assessment of his needs, and that the current care home he is living in is dangerous and isolating for him. She argued that other, closer, places are available, having contacted them herself. She argued that L’s Article 8 human rights to a family life are being breached and that his own wishes and feelings are not given sufficient weight. She summed up her position:
I do feel that myself and L’s father are very frustrated that the Health Board is very complacent in what they do. They say things will be done, yet nothing is being done. Whether it’s concerns about the placement or looking [for alternative places]. They will leave L continued in isolation and depressed. His quality of life is not being met where he is. I would like to add that I felt, as well, that after giving the evidence in my statement this was the only way [to make an appeal]. As his mum, I could never give up. L should be back home in [home town]. The judge said ‘No that’s it – I am not going to look’. So, for myself, this is where I feel that unless the judge does keep watching, L will end up continuing in that place.
The judge checked that V (L’s father) was in support of C’s position, and he confirmed that he was, adding, in relation to where L lives now:
“… the rooms are small, there is no toilet or wet room [of his own]. He can have toilet issues, there’s no dining room, there’s no interaction with other residents, peers, [ … ] he has to wait for someone to come out of the toilet. […] He eats his food in his bedroom because there’s no dining room. It’s inadequate. One more thing … the car park where L’s van is positioned is reversed out into the main road. It is dangerous, there’s a lack of staff and a fire hazard, no access for L to get out of the front door.”
Both counsel (for Swansea University Health Board and L’s Litigation Friend) submitted that permission to appeal on the five grounds should not be granted.
Submissions from the Health Board
Counsel for the Health Board gave very short shrift to C’s suggestion that they had not made efforts to find an appropriate place for L to live, stating: “… a residential decision was made by the court [on 31 March 2025] for a 12-month period. Under the Mental Capacity Act, this calls for sensible decision making. It’s not a pursuit of perfection. It was accepted by all parties that the ideal solution is that he would live closer to his parents. It had been in front of the judge for four years. No other placement is realistically possible to meet L’s complex needs.”
Submissions for L (via his litigation friend)
Counsel for L’s Litigation Friend said: “The Litigation Friend’s position is that court should refuse permission to appeal. Firstly, on the basis that it has not been demonstrated by C that the decision was in any way wrong on any of the grounds. Neither is there a compelling reason to give permission to appeal.”
And: “I echo Ms Sutton regarding the extensive efforts by the Health Board looking for other options.”
C’s response
The judge gave C an opportunity to respond:
“[C] in the last eight minutes before I retire to consider what I have heard, is there anything you want to say that arises from what you have heard.” [Judge’s emphasis]
C reiterated her view that there was inadequate assessment of L’s needs, that ‘parent-carer blame’ was at play (and cited the work of Professor Luke Clements from Leeds University), summarised her view of the nature of the inadequate search efforts by the Health Board, and (contrary to counsel for L’s assertions) that L does not express anything positive about being at the current home.
Judgment
After retiring for lunch and to consider the submissions, the judge resumed the hearing at 2pm.
Morgan J ensured that she could be heard (the hearing had been plagued by poor sound quality from the Royal Courts of Justice) and assured parties that “In time this will be subject to a transcript, a written version will be sent out.” Indeed, just five minutes into her judgment the sound completely cut out and there was a fourteen-minute hiatus before the judge explained “Sorry about that – there was a complete power cut in court.”.
Morgan J foregrounded her judgment with the following regarding C: Although she has represented herself and plainly found matters emotionally difficult, she has acquitted herself well and made clear what it is she wishes me to have in mind.
This felt important: C is a litigant in person, up against very experienced and formidable barristers with the benefit of legal training and years of advocacy. C is the mother of a young man whose care she is extremely concerned about, and in which she has an emotional investment. The parties are clearly not on a level playing field.
The judge outlined the process of her deliberations: considering the ‘relevant and applicable law’, that she is only entitled to “interfere with a decision if I am satisfied it was wrong” (judge’s emphasis) and she also addressed the second reason that appeals can be granted (that it will have a ‘real prospect of success’).
Morgan J then took each the five grounds for appeal in turn and addressed the merits of each of them, summing up as follows:
“In the application for permission to appeal which I should grant, I have been driven to the following conclusion. Relevant matters [were] all considered by this judge. He had been the allocated judge for some very significant time; he had the evidence before him to carry out a best interests decision for a 12-month period. It can be reviewed if an alternative place becomes available.
He plainly had in mind the overriding objective – he has made a best interests analysis decision for the next 12-month period.
It is plain from the note that he was thorough in analysing the issue on the evidence before him – there is nothing to suggest he was wrong in his application of the law. Again, C has fairly conceded in her most recent statement that she does not take issue with his application of the law. All arguments made by the applicant were made with sincerity and real concern for the welfare of her son. I regret to say they do not come anywhere near to me saying the judge was wrong,
I have to refuse permission to appeal.”
Reflections
A co-observer of the hearing, Kim Dodd, reflected that it had ‘felt like David and Goliath’ and I agree.
The judge, throughout the hearing and when giving her judgment, appeared to feel for C. She seemed regretful that she had to dismiss the application – but legally I think she did.
That does not mean, however, that L is in a place that meets his needs, that he is happy (or even settled) there, that he has any regular connection with his home town and the things he likes to do there, or that he sees his family anywhere near as much as he (and they) would like.
I don’t know what efforts the Health Board has made to find a better, closer place for L to live. Maybe they have done everything possible, maybe they haven’t. It’s not an area that I know a lot about but a brief search on the internet about availability of adequate supported living for young adults with learning disabilities in England and Wales suggests that there are just not enough places offering adequate quality support (this from 2018, this from 2019 and this in 2023).
A hearing like this is upsetting to observe, and (despite C presenting her case clearly) is often distressing for the litigant in person. Although the judge showed compassion for C, I thought that this was not mirrored in the style of presentation from either counsel. Understandably, they advocated for their clients’ positions (that everything is being done and that they have taken time to understand L’s wishes and feelings). It was the harsh tone from counsel and short shrift they gave to C’s position that left me feeling uncomfortable and wondering whether that was a necessary feature of their submissions. I know that’s what a court of law can be like, and especially between counsel. C is not a lawyer though.
One issue of interest that I know very little about cropped up: why C did not go for Judicial Review (instead of an application to appeal). C suggested she was given no help (earlier in proceedings) to understand the system and what the options were. C expressed a view that I have heard from family members many times in court (whether Litigants in Person or not) – that their options and the legal process is not made clear to them by lawyers:
Judge: Can I be sure … when you were talking about if you’d known more about the legal processes …. [there has been] no Judicial Review of the decision making?
C: Yes we weren’t told there could be a Judicial Review of the decision making, no one told me. We weren’t given information about time limits about appeals. This whole system for parents like myself is a new world. It is complicated to understand. Now the decision has been made, I would have gone to judicial review.
This was later summarily dismissed by Emma Sutton saying C had been represented back when the case first to court. Being represented doesn’t necessarily mean, of course, that C would have been told about the option of Judicial Review.
“Judicial review is a type of court proceeding in which a judge reviews the lawfulness of a decision or action made by a public body. In other words, judicial reviews are a challenge to the way in which a decision has been made, rather than the rights and wrongs of the conclusion reached. It is not really concerned with the conclusions of that process and whether those were ‘right’, as long as the right procedures have been followed. The court will not substitute what it thinks is the ‘correct’ decision. This may mean that the public body will be able to make the same decision again, so long as it does so in a lawful way.”
So, for C, perhaps a Judicial Review might have been more appropriate, had she known about its purpose: to review the decision-making processes of the public body rather than the decision-making processes of the judge. Indeed, Morgan J said, in her summing up:
“The issue that developed is in relation to a decision taken by a public body, but not subject to Judicial Review. […] Listening to the applicant say that she must do everything she could, there is some sense of regret that at an earlier stage a Judicial Review has not been taken. It informs me as to the way in which the decision [was taken] to pursue the appeal route, and leave no route exhausted, is one which has assumed a great prominence in those who care for LL.
[…]
Importantly, [what has been] difficult to focus attention on in this short hearing, is to review the hearing below and NOT to rehear it.”
It must be extremely hard, as a litigant in person without legal knowledge and training, to present in court submissions about what a judge has got wrong in law. We have seen many appeals from families where they tend towards arguing the same case before a different judge, in the hope that that judge will make a different decision. As Morgan J was at pains to ensure C understood in this hearing, this was not, and could not be, the purpose of an application to appeal a judicial decision.
An explainer blog for the Open Justice Court of Protection Project about Judicial Review, the relative merits of taking this approach instead of appealing a judicial decision, and how families and litigants in person can navigate the waters of these tricky decisions, would be very welcome. Would anyone with expertise in this area be willing to write one for us?
Although Swansea University Health Board and L’s Litigation Friend are advocating for the proceedings to come to an end, I have a sinking feeling, as C submitted, that “unless the judge does keep watching, L will end up continuing in that place”.
The next hearing for this case, before HHJ Porter-Bryant, is scheduled for Tuesday 20th May 2025. I think it will be about contact arrangements between C and L.
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 team of the Open Justice Court of Protection Project and has published dozens of blog posts for the Project about hearings she’s observed (e.g. here and here). She is on X as @DocCMartin, on LinkedIn and on BlueSky as @doccmartin.bsky.social
Note: Judges must give permission for parties to share their Position Statements and we routinely ask the court associates (when we email requesting the link to observe a hearing) to pass a message to judges asking them to give permission to parties to share Position Statements. I did so for this hearing. Reading Position Statements assists enormously with understanding the law and the submissions, and with improving accuracy in our blogs. Judges often address the request during the hearing, but Morgan J did not do this on this occasion. I don’t know whether she received my request. I have since requested the Position Statements directly from counsel for the public body and for the litigation friend and informed them that I requested permission from the judge, but to date I have not received a reply. Given that the next hearing for this case is very soon, we have chosen to publish the blog without the benefit of reading these Position Statements. Observers will be asking for the Position Statements for the next hearing and hope the judge and counsel will respond.
The issue before the court is whether the deprivation of liberty arising from his care and support arrangements is proportionate and in his best interests. With the exception of one element of this deprivation of liberty (up to 2:1 supervision), the judge has so far declined to authorise these arrangements.
I have observed four hearings in this case (COP 13261362): in October 2024 (“the October hearing”), December 2024 (“the December hearing), February 2025 (“the February hearing”), and one on Monday 31st March 2025 (“the March hearing”).
It is the March hearing that this blog concerns. As with the other hearings, it was before District Judge Clarke, who was sitting in person at First Avenue House.
The public bodies involved in this case are: the NHS South West London Integrated Care Board (represented by Ulele Burnham), the London Borough of Wandsworth (represented on this occasion by Peggy Etiebet), and the South West London and St George’s NHS Trust (represented on this occasion by Jake Thorold).
Eleanor Leydon represents XY via his litigation friend, the Official Solicitor. XY’s mum, dad, and two siblings are his court appointed deputies for health and welfare. XY’s mum is also a party to proceedings. She was unable to secure representation for this hearing, and therefore represented herself as a litigant in person. She was supported by a McKenzie friend.
Rather than set out the background of this case, which I have done elsewhere, I am going to make reference to my previous blog throughout this blog. That’s because there has been very little meaningful development. This blog is structured as follows:
(1) Issues about transparency: in particular, difficulties in identifying which barristers represented the parties in this hearing.
(2) Judicial directions in relation to placing restrictions on XY’s internet use
(3) Judicial concern about the exclusion of XY’s family (especially insofar as they are also his deputies)
4) Blood tests, and a reduction from 2:1 supervision – two other issues already repeatedly raised in this case
1. Transparency Matters: Secret barristers?
A few hours before the hearing in March, the Open Justice Court of Protection Project received an email from a lawyer representing the ICB asking us to correct “significant errors in the reporting of the case” in our reporting thus far (in this blog post).
There were two concerns raised. First was an erroneous attribution of the words “I can see the court’s concern” to Counsel for the ICB (it was actually said by Counsel for the local authority). Second was a potential for misunderstanding in a way that I’d presented some dialogue. The ICB was concerned that I might be read as implying that a social worker was employed by them when the social worker is in fact employed by the local authority. I was disappointed that I’d inadvertently made these mistakes, but I was glad to be able to correct them speedily.
For the March hearing, as I always do but with an eye on the fact that they are the best guarantee of fully understanding a party’s position, I asked (via email) if the judge could give permission for position statements to be shared. As with previous hearings, she did so but the choice of whether they are shared remains with the parties.
This hearing was in person, and the court had been able to establish a video link for remote observers (which is a positive for transparency). Less positively, however, the camera was fixed firmly on the judge (which couldn’t be corrected, despite the judge’s best efforts), and the sound from microphones in front of counsel was – at the beginning – weak.
This meant that none of us on the link could properly hear the introductions. We could hear enough to distinguish different voices but couldn’t be sure we had heard the right surname. As is usual in court proceedings, counsel was introduced as “Mr/Ms X” (i.e. surname and no first name) making it even harder to be able to identify exactly who was representing the parties. Since we could neither see the barristers, nor hear them clearly, we didn’t know who they were – except that I thought I recognised the voice of one of them (counsel for the ICB), who had acted at other hearings I’d observed. I sent her an email. I asked both for her position statement and to confirm the name of counsel for the local authority (I thought I knew counsel for the Trust but turned out to be mistaken).
She told me that she needed to take instructions about whether I could have the position statement (I never received it so I assume the answer was “no”) but did not acknowledge my question about other counsel. A follow-up email, in which I asked who represented the local authority and Trust, also went unanswered.
A paralegal sent me the position statement filed on behalf of the Official Solicitor, and I asked if he could confirm the names of other counsel. He was happy to do so – but only after he had confirmed that they were happy for this information to be shared. Of course, they did give that permission but it took until nearly the end of April before I received the names of both barristers.
I don’t want to be critical of the paralegal for taking this approach – he was more than happy to help – but I do wonder whether it was strictly necessary. This case was heard in open court, and it naturally follows that the names of counsel can therefore also be lawfully placed in the public domain.
I think I wouldn’t have had this problem if I’d asked the court. According to HMCTS guidance[i], “in line with Part 5 of the Civil Procedures Rules (CPR) […] journalists […] should be given factual information about cases such as […] the names of parties, the judges, barristers, solicitors’ full names”. Furthermore, “staff should treat the public the same as the press and give out details about cases as set out above”.
The Court of Protection can apply the Civil Procedure Rules where a situation is ‘not expressly provided for’ in the Court of Protection rules. (Rule 2.5). I see no reason why this particular rule would not carry across into the Court of Protection, notwithstanding the fact that there doesn’t appear to be a specific rule about this issue.
All of this could have been avoided if each of the parties’ representatives had introduced themselves (clearly and loudly) with their first and last name. As the Open Justice Court of Protection Project suggests in its transparency tips for judges, asking counsel to be introduced by their first and last name may not be court etiquette but it does ensure both accurate reporting and a guarantee that we will be able to find the right person online (so we can ask for position statements).
As it happens, knowing the name of counsel didn’t help me to get a copy of the public body’s position statements. In the end, I only ever received the position statement of XY’s mum and the Official Solicitor. As a result, I know neither the full position of the public bodies nor whether what was discussed in court was foreshadowed in their position statements.
2. Restrictions on internet use
In my previous blog, I explained that the parties agree both that XY lacks capacity to access the internet and that it is not in his best interests to have unrestricted and unmoderated access to the internet. At the December hearing, XY’s mum (represented by Oliver Lewis) wanted Cyber Spider to be commissioned in order to provide a report on possible interventions to restrict XY’s internet use in a “specific and autism informed way”.
The position of the local authority was that it had made a public law decision to not commission Cyber Spider, and therefore the Court of Protection had no jurisdiction to direct its commissioning. The judge agreed.
By the time of the February hearing, a best interests decision had been reached that XY’s internet access would be supervised but there was no clear plan for who was responsible for the implementation of that decision.
It was depressing, but also unsurprising, that there were further submissions around internet use in the March hearing. In order to respect XY’s privacy, and out of respect for the request from XY’s mum (made in open court) that certain information is not reported, I will not detail the specific risks that arise from XY’s internet usage. It suffices to say that, given the nature of these risks, I find it extremely worrying that appropriate restrictions are still not in place.
The Official Solicitor’s position statement sets out the restrictions as: XY agreeing to hand in his phone at 10pm, XY being encouraged to use his phone in communal areas, XY being provided with an education package, and support staff having access to free online resources.
A statement from the local authority, filed at the end of February 2025, notes this plan needs review due to issues in implementation. At a Round Table Meeting on 10th March 2025, it became clear that XY’s care co-ordinator and Care Provider had written to the local authority to set out that they think XY remains at risk because the interventions were not working.
The other parties requested that the plan was reviewed within 7-10 days but the Official Solicitor’s position statement goes on to note that, “It is disappointing that the review of this plan has not been completed in good time before the instant hearing [the March hearing], or the draft plan circulated to XY’s legal representatives (the Local Authority have not filed a version of the latest plan, although a version is appended to [XY’s mum’s] position statement).”
In many ways that updated version is a more rigorous version of the above. Now, support staff should: suggest alternative activities, remind XY to take a break from his phone after one hour, regularly discuss what XY is accessing on the internet, and ask XY how he feels about his internet use.
XY’s care provider had provided some evidence to suggest that XY would hand in his phone at 10pm. However, as the judge put it, “it clearly isn’t [happening] when he’s texting [family] at 4am…It seems to me that what you have in place at the moment isn’t being implemented.” Indeed, XY’s mum told the court that “he’s never handing in his phone – he hasn’t done that since May [2024] when the Trust removed restrictions”.
In the last blog, I wrote about the February hearing: “the judge’s patience in waiting for a decision had run short. It is quite unusual to observe a judge who appears angry but, on this issue, she clearly was.” If the judge’s patience had run short in February, it had all but expired by the March hearing.
The judge asked Counsel for the local authority what is being done to prevent him accessing certain material. Counsel told the court that, from looking at the Official Solicitor attendance notes, “[XY] is quite honest in relation to internet use” (which the updated plan is clearly contingent upon).
Judge: Well, how do you know that? How does the Official Solicitor know?
Counsel for local authority: [Care provider] provided that information.
Judge: But [Care Provider] told you he’s handing his phone in.
Counsel for the Official Solicitor: In respect of how [Care Provider] know, they watch…The Official Solicitor and [XY’s mum] share concerns about what websites are being accessed…That’s why the draft order provides for specific consideration of monitoring measures….
Judge:Forgive my naivety, but I find it incredible that, having assessed his capacity and found he can’t use the internet safely, and making a best interests decision there should be some restrictions, there seems to be nothing effective happening, and he continues to have unfettered access to the internet that is barely monitored.
A little later, the judge reiterated the point: “It’s all taking too long. It’s just taking too long. He’s still got unfettered access to the internet…with limited evidence to suggest that is not the case.”
It’s worth pointing out that, in the position statement that XY’s mum filed, she notes in relation to handing in his phone: “[XY] has, and continues to refuse to do this. Anyone who knows [XY] knows this.”
During the March hearing, XY’s mum once again raised the possibility of Cyber Spider being commissioned and after, a long pause, the judge said, “I can’t require them [the local authority] to get Cyber Spider to get involved as a service that they commission. But does anybody want to address me on whether I have the power to have Cyber Spider report to the court?”
This course of action was supported by both XY’s mum and Counsel for the Official Solicitor.
As has repeatedly been stated in previous hearings, and during this one, decisions about internet restrictions are within the purview of the local authority. Nevertheless, it was Counsel for the ICB that the judge turned to first.
Counsel for the ICB submitted that, while she understood the concerns of XY’s mum, she did not think it was necessary to instruct an expert. Rather, the court should direct the local authority to revise its best interests decision on the basis that it is inadequate. Counsel also submitted that she did not think it was appropriate for the ICB to fund a joint report on an issue that was not part of the ICB’s responsibilities.
The judge was not satisfied with this proposed approach. She pointed out that neither she, nor any of the parties, could properly explain what possible restrictions are available. It therefore seemed logical to direct “a section 49 report from a cyber expert – not necessarily Cyber Spider – so I can have the details in front of me”.
Counsel for the ICB resisted this approach, thinking this could be dealt with between the parties. In the words of the judge: “I think I understand your position quite clearly; you think there is a cheaper way and you shouldn’t pay for it. Unless there’s something I’ve got wrong in that summary, I’ll turn to the other two parties”. That summary was not corrected (at least not in a way that was audible to those of us on the remote link).
Counsel for the local authority put forth a similar position. She submitted that, “the local authority considers it would not be proportionate to instruct an expert”, that it could give consideration to further monitoring, and that commissioning a specialist “is outside the jurisdiction of the Court of Protection” due to the previous public law decision.
On behalf of the Trust, Counsel submitted simply that their position is similar to that of the ICB: internet use is not an issue that the Trust has been asked to give evidence on.
What followed was a complex discussion, that I struggled to follow, about Court of Protection rules. Rule15(12), it was submitted on behalf of the ICB and local authority, meant that only the instructing party should have to pay. The judge said that this was “not helpful” because the rule related to the instruction of a joint expert. Having researched the relevant rule for this blog, it’s quite clear that’s exactly what it was intended for. Here’s what it says:
The judge did not have in mind an expert instructed under this rule.
“The court has taken a cautious approach…and resisted, previously, attempts to obtain outside assistance. What is utterly clear is that those steps are not working and we are now months and months down the line. This vulnerable person lacks capacity to access the internet use but is effectively left to do so…The local authority have made best interests decisions about what they think is necessary but at no point is it clear to the court that I have been provided information with the range of options open to me to keep him safe….[and] how to restrict his internet access in the least restrictive way… I am content that we have reached the stage that some expert evidence outside of the parties should do so….The parties have had ample opportunity to do so and not done so in an adequate way… It is for me to identify what evidence may be required in order to resolve the issues in the proceedings, and the biggest issue I see is of the least restrictive way to access the internet to ensure XY’s safety. I can order a s49 report and it seems to me that may be the way to deal with it. Cyber Spider has been identified as a possible source but that isn’t the only possible source”.
With that the judge had clearly made her decision. An expert – perhaps Cyber Spider but perhaps somebody else – must provide a report on what restrictions are available. It falls on the local authority to make the necessary arrangements.
I’m glad that the court has now taken more assertive action in establishing how XY’s internet usage could be monitored and restricted. I’m just not sure why this required an assertive approach.
3.The continuing exclusion of XY’s family
XY’s mum, as well as his dad and two siblings, are his court appointed deputies for health and welfare. Despite this, and as I explained in my previous blogs, they’d repeatedly been left out of the loop, and have not always been involved in the making of best interests decision making.
At the February hearing, the judge said: “there appears to be a disconnect between various people taking decisions and the level of involvement of the deputies…so I will include a recital reminding the parties you [XY’s mum] are an unrepresented party [who is also a deputy] and they must comply with their obligations to consult on best interests decisions under s4 of the Mental Capacity Act, and they should do so with a sufficient time to consider and respond to anything before the deadline of any filing that they have to do”.
I hoped – apparently naively – that this would have sharpened the mind of the public bodies, and encouraged them to properly involve XY’s family. At the March hearing, it became clear that this was not the case.
During a discussion of appropriate restrictions on internet usage, XY’s mum pointed out that some of the proposals would not work: “[XY] does not spend time downstairs on his phone. He has a duvet over his head. He deletes his history…Like everything else, there is no collaboration with family”.
The judge was concerned to hear this, asking: “Why are the family and in particular people who hold deputyship not being asked, and who would be best in the sum of knowledge, not being engaged?”
No clear answer was forthcoming (perhaps somebody answered out of range of a microphone but the judge didn’t respond to it if they did).
This issue was revisited toward the end of the hearing. XY’s mum had said something that I didn’t quite catch but it was met with the judge saying, “Why is that? Is there a reason they’re [family] being excluded?”
Counsel for the Trust told the court that there was not and, once again, the judge had to remind them of their duties: “You have an obligation to consult them, and to do so in a meaningful way unless there is a reason why it’s not practicable. I’m not seeing any evidence that it isn’t practicable unless an urgent decision has to be reached. So is there any reason why you shouldn’t include her in all of these meetings?”
Counsel for the Trust pointed out that it would be disproportionate for XY’s mum to be invited to every meeting (such a Multi-Disciplinary Meetings where plans are formulated) but the judge was alive to the issue. She said she would include a recital in her order that XY’s deputies must be consulted every time a best interests decision is taken.
I found this really quite remarkable. As I said in my last blog, “The very fact that this recital had to be included demonstrates that the public bodies have utterly failed in their duties.”
It seems that little has changed.
4.Blood tests and transition plans
There were two other issues that the court had to deal with; issues that, it seems, really should have been resolved before.
One of these issues was the question of blood tests. Due to his restricted food intake (the position statement of XY’s mum explains that he is prescribed high protein supplements), he may need blood tests. However, there had been no assessment of XY’s capacity to consent to, or to refuse, blood tests and there was no apparent plan to conduct any such assessment. As the judge put it, “that’s an ongoing problem”.
The Official Solicitor’s position statement reveals a disturbing lack of action in this regard. It states that XY’s care-coordinator had said in December 2024 that he may accept blood tests with the right type of social story but (according to the Official Solicitor) “it is not clear whether this was ever progressed”.
In the early part of 2025, a dietician reportedly told the care provider’s staff that “XY’s weight was within an acceptable range” but there was no written evidence. Finally, 11 days before the March hearing, the Trust met with XY’s GP, and the public bodies had a meeting the day after. In the stark language of the Official Solicitor’s position statement: “no other progress has been made in respect of blood tests beyond a plan to review and assess the urgency of blood tests, and an agreement to agree a plan for arranging blood tests”.
This was another area in which the judge gave detailed directions for the filing of further evidence. She directed the following to be filed with the court: “a narrative on the work done in relation to blood tests”, including how urgent they are, as well as a capacity assessment (I think to be completed by XY’s GP).
At the February hearing, the judge had authorised the deprivation of XY’s liberty that arises from close supervision (either 2:1 or 1:1). XY’s mum told the court in March that it “would make a difference” for this level of supervision to be reduced and had sent the parties a proposal for its reduction.
While neither the ICB nor the Trust were able to take instructions on this specific point, Counsel for the ICB did flag that XY’s mum had raised concerns about the transition. The judge declined to get into this further, instead making it clear that she has authorised “up to 2:1 for the time being…and require everybody to put together a plan that doesn’t have to wait until the next hearing to be implemented if everybody is in agreement… I am not going to go into the ins and outs of the transition plan, that is micromanaging too far at this stage”.
This case will return to court at 11am on Monday 14th July 2025. I hope, by that time, the judge’s firm handling of this case has resulted in positive results for XY.
Daniel Clark is a member of the core team of the Open Justice Court of Protection Project. He is a PhD student in the Department of Politics & International Relations at the University of Sheffield. His research considers Iris Marion Young’s claim that older people are an oppressed social group. It is funded by WRoCAH. He is on LinkedIn, X @DanielClark132 and Bluesky @clarkdaniel.bsky.social.
Editorial note: There is a now published judgment, following the later hearing of 22nd and 23rd May) (which will be blogged separately). Click on the link in the name of the case:
The man at the centre of this case (COP 20006397, before Poole J) is in his 40s. On 5th May 2024, he suffered a cardiac arrest resulting in a severe hypoxic brain injury. He was for many months – and may still be – in a prolonged disorder of consciousness.
The key issue before the court is whether or not the “Living Will” provided to Trust doctors around three months after P’s collapse constitutes a legally valid Advance Decision to Refuse Treatment (ADRT) in the terms set out by the Mental Capacity Act 2005 (ss 24-26) – and if so, whether its treatment refusals apply to P’s current situation. Validity and applicability will be the main issues at the next hearing, which is listed for two days (22nd and 23rd May 2025). The family also make allegations that the living will is fraudulent (e.g. that the signature may be forged) and that it may have been written under coercion or undue influence. If necessary, there will be another hearing after the 22nd and 23rd May to consider those issues.
I’ve watched one previous hearing in this case (there have been two – I think – that I’ve not watched) and I blogged about it here: “Determining the legal status of a living will”. At that last hearing, the Trust informed the court that P had “emerged” from his prolonged disorder of consciousness. At this hearing, on 12th May 2025, that statement was put in doubt. It was reported that records from the specialist brain rehabilitation centre to which P was moved on 2nd April 2025, a week after the last hearing, state that P remains in a prolonged disorder of consciousness (a “minimally conscious state”) and that a doctor there says there is no evidence of his having “emerged”. It turns out, belatedly, that there has been no assessment of P by an appropriately qualified medical expert.
There’s also some new evidence that’s been filed since the last hearing: statements from the two people who witnessed P’s signature on his ‘living will’[i]. They report that P’s partner was not present at the time the document was signed, that as far as they knew she wasn’t aware of its existence, and that they didn’t bring it to her attention until they learned about the severity of P’s brain injury some months after his cardiac arrest. They also report that they discussed its contents with P at the time, in one case, comparing personal experiences of relatives with severe brain injury. One witness wrote of P, “he said he would not want to survive in that situation”; the other wrote, “the situation he is in now is like his own nightmare”.
The hearing I’m reporting on in this blog post was a “pre-trial hearing”, i.e. it was an opportunity for all the parties to make representations to the judge about what remained to be done (and by what dates) before the hearing on 22nd and 23rd May, to make sure everything is in place and runs smoothly. The hearing lasted just a little over one hour and addressed two key issues:
Appointment of an appropriately qualified independent medical expert to report on Ps current condition and prognosis. Nobody opposed this and the judge considered it ‘necessary’ (although there were some issues with funding[ii]). Professor Derick Wade, a consultant in neurological rehabilitation, will assess P, provide a report and give oral evidence at the next hearing.
Scope of the hearing on 22nd and 23rd May. The scope of the hearing for 22nd and 23rd May was contentious with the ICB, the OS, and P’s partner wanting to include oral evidence and cross-examination from the two people who witnessed P’s living will, and the mother strongly opposing that, since there is further evidence she wishes to gather relevant to their cross-examination which will not be available by that date. (I’m not sure what that evidence is.) The judge had previously decided that the only two issues to be addressed at that hearing would be (1) validity, i.e. does the document comply with the requirements of the Mental Capacity Act 2005; and (2) applicability, i.e. are the treatments being provided treatments P has refused under his current circumstances. The allegations from P’s mother (supported by the wider family) that the ADRT is fraudulent (e.g. the signature is forged) or created through undue influence (and presumably that the two witnesses were part of that conspiracy) were to be decided at a subsequent hearing, if necessary. After hearing from all parties, the judge restated his original decision to consider only validity and applicability at the late May hearing, adding that “if the court were to find the living will either invalid or inapplicable, then there would be no requirement for that further hearing. It may be that if the court were to find that the living will is valid and applicable that the family may take a view on the evidence available as to whether or not it is worth pursuing the issue of authenticity”.
The hearing
The Trust had left it to P’s partner as a litigant in person to bring these proceedings to court and she was initially the applicant. The applicant now (I think at the judge’s suggestion) is the ICB who manage P’s funding at the specialist rehabilitation placement (NHS Staffordshire and Stoke-on-Trent Integrated Care Board). Counsel representing the parties are as follows:
for P (by his litigation friend, the Official Solicitor), Ian Brownhill;
for the Trust: Benjamin Harrison (at the last hearing it was solicitor Natasha Sond who represented the Trust);
and for P’s mother Parishil Patel KC along with Eliza Sharron (Ms Sharron was previously counsel for the mother, had authored the mother’s position statement[iii], and was present in court at this hearing but did not address the judge.) The mother is formally the represented party, but her views are shared by those of other family members, including three of P’s sisters and a brother.
It’s striking that six of the seven barristers (Benjamin Harrison at Serjeants’ Inn being the exception) are at 39 Essex Chambers. All seven are highly respected barristers with excellent advocacy skills, which means that the important issues raised by this case should now be addressed with the appropriate level of expertise.
Counsel for the applicant ICB provided a helpful and detailed introduction to the case at the beginning of the hearing[iv], following which each party made updating submissions.
The ICB: NHS Staffordshire and Stoke-on-Trent Integrated Care Board
Counsel for the ICB (Nicola Kohn) reported that “the parties have got together and recognised that regrettably P’s recovery is less than thought, and he may not have emerged from a PDoC [Prolonged Disorder of Consciousness]”. She suggested that this less positive diagnosis may mean that “issues between the parties have narrowed” (i.e. that there are fewer specific points of dispute between them). This (she said) might make possible “a more truncated manner of managing the case” because “if it turns out that Professor Wade says the prognosis is very poor, and if [the witnesses to the living will] say ‘well, these are the circumstances he anticipated’, then the issue of authenticity may fall away […] The hope is that it might be that, having got to the end of the two days, the parties may be in a position to agree a final outcome in P’s best interests, albeit that the Official Solicitor may wish to determine the validity of the living will”.
This strikes me as a pragmatic position to adopt, and one I’ve seen before in disputes (out of court) about the validity and applicability of purported ADRTs. People with intractable disagreements about whether or not a document refusing treatment is legally binding, are sometimes able nonetheless to agree that treatment is not in the patient’s best interests. This may seem an attractive (if possibly optimistic) solution, but in my view, it could lead to the right decision for the wrong reason. In this case, a ‘best interests’ decision to discontinue treatment would worry me, because it has the potential to undermine the statutory provision for ADRTs. It would be open to the interpretation that the criteria for valid and applicable ADRTs are so stringent (and the potential for accusations of fraud and undue influence so potent) that few such documents can sustain legal challenge, and are best treated instead as expressions of ‘wishes and feelings’ (s. 4(6)(a) MCA 2005). This would subvert the statutory provisions of ss. 24- 26 of the Act, and it would leave very vulnerable those of us whose advance decisions to refuse treatment are not viewed by clinicians or the court as being in our own best interests (see my earlier blog post “Determining the legal status of a living will: Personal reflections on a case before Poole J”).
The Trust: Midlands Partnership University NHS Foundation Trust
Counsel for the Trust (Benjamin Harrison) expressed the view that “it’s difficult to separate out allegations of bad faith and fraud, and the court took the decision to consider validity and applicability first, without issues of fraud, which might be the safer course” (so supporting the judge’s initial decision for hearing the case in two stages).
To my surprise, counsel then announced that “the Trust position is that the living will is prima facie valid, and that’s a change in our position”. It certainly was! At the previous hearing, the legal representative for the Trust (Natalie Sond) had said that the written treatment refusals were not valid because P had done things “clearly inconsistent with the advance decision remaining his fixed decision” (s.25(2)(c) MCA 2005). She didn’t say what those things were (I speculated about this in my previous blog post), but based on what I learnt from this hearing, it seems the Trust at that point took the same position said to have been adopted by P’s mother, namely that, by occasionally responding to a therapist, P is indicating that he wishes to engage in treatment, and that this amounts to an act by P which is “inconsistent with the advance decision remaining his fixed decision”.
Their position now has changed, in part as a result of further legal advice: “the Trust is now cognisant of Poole J’s decision in Re PW [Re PW (Jehovah’s Witness: Validity of Advance Decision) [2021] EWCOP 52] that (1) it should not strain to find something done which is inconsistent with the advance decision remaining the individual’s fixed decision and (2) arguable inconsistency, or something which might be inconsistent, does not reach the threshold in section 25(2)(c) MCA 2005”. So, there is no longer any argument from the Trust that the ADRT lacks validity. And the Trust has never alleged coercion or fraud.
One of the treatments specifically refused in the ADRT is clinically assisted nutrition and hydration and P is currently receiving this via a PEG tube. However, the Trust maintains that this treatment refusal is not applicable[v] to P’s current situation (and also that it wasn’t applicable when P was in the care of the Trust). This is on the grounds that “the circumstances specified in the Advance Decision are not currently present”, because “at the one-year point post his hypoxic brain injury, [P’s] prognosis remains unclear”. This is an odd statement given P’s current presentation and the length of time since his hypoxic brain injury. It seems almost indisputable (certainly to anyone familiar with PDOC) that P will remain profoundly disabled and require support with all activities of daily living – precisely the issues that P had specified in the ADRT as causing him to want to refuse treatment due to an unacceptable quality of life.
The ADRT refuses life-sustaining treatment following brain injury in the event that it “caused life changing permanent disabilities and no quality of life”, but according to the Trust, it is not yet clear that P won’t have “quality of life” which, for him, includes: “not living in a care home; not living in a nursing home; not receiving 24-hour care where he cannot meet his own basic needs by going to the toilet, showering, cleaning himself, and getting dressed” (from §42, Trust position statement). The Trust position is that “the question as to whether the circumstances described in [P’s] Advance Decision apply in this case resolves itself into an assessment of [P’s] prognosis, i.e. whether or not the treatment proposed will actually give [P] a realistic prospect of living a life of an acceptable ‘quality’”. Well, yes, and that’s why a proper medical diagnosis and prognosis is needed. According to the Trust, P’s “rehabilitative potentialand prognosis” are still unclear, and so the ADRT is not (or not yet) applicable, yet they are “neutral” on the matter of appointing a medical expert.
The reason why P’s “rehabilitative potential and prognosis” are still unclear (and hence, according to the Trust) the ADRT is not applicable, is because the Trust believes (possibly wrongly) that P has emerged from a prolonged disorder of consciousness and because the Trust has not taken any steps to appoint a properly qualified expert to assess P’s diagnosis and prognosis. In other words, in my opinion, it is the Trust’s own negligent inaction, that has – in their analysis – rendered the ADRT “inapplicable”. I find this shocking. It’s also terrifying for those of us with ADRTs that a Trust would decide to simply wait “for two or three years” to see what level of recovery the patient achieves. By that time, of course, treatment refusals may no longer be relevant – as in my sister Polly’s case (see: “Doctors wouldn’t let my sister die”).
The Trust now wishes to apologise for their mismanagement of this case. Counsel for the Trust said “the Trust apologises through me, and you’ll have seen lessons learnt and we accept that that an application should have been made once issues arose as to the validity and applicability of the Advance Decision. The points in Ian Brownhill’s position statement on behalf of the Official Solicitor are fairly made”. I’m not sure to whom this apology was directed. I think it was made to the judge. I hope P’s partner and family also receive a full and frank (written) apology – as my family did (eventually) from the Health Board who administered life-sustaining treatments to my sister Polly without proper reference to the Mental Capacity Act 2005.
It appears (from the section called “Lessons learned” in the Trust’s position statement) that the Trust’s relevant internal policy is “based in large part” on the Mental Capacity Code of Practice 2007. It’s widely accepted by legal professionals that this is out of date and does not reflect developments in law or medicine. It is not, and has never been, “the law”. But I too, interceding on behalf of other families caught up in disputes with Trusts, have been referred (sometimes by Trust lawyers) to passages in the Code of Practice which misrepresent the statute, or interpret it in ways that are not congruent with recent case law. The behaviour of this Trust is sadly not unusual. The Code of Practice urgently needs updating – and until it is, no professional body should rely on it as the basis for their internal policy. The Midlands Partnership University NHS Foundation Trust says its policy and procedures will now be revised and “further training” implemented. It’s most certainly needed.
The Official Solicitor (for P)
Counsel instructed by the Official Solicitor to act for P submitted – clearly and succinctly and with reference to each of the relevant sections of the MCA 2005 – that the ADRT is valid, but that the court is “unlikely to be able to come to a finalised decision as to applicability without medical opinion as to the prospect of neurorehabilitation”. On applicability, the OS position seems to be the same as the Trust’s, i.e. (as the Trust now says) “the applicability of the Advance Decision depends on further and better evidence to establish [P’s] prognosis and rehabilitative potential, with a comparison as to how that fits with [P’s] definition of ‘quality of life’”. The OS says there is no evidence that the ADRT is a forgery but does not currently take any position as to whether P was subject to undue influence – and these matters will in any case not be addressed in the next hearing.
The criticisms of the Trust raised by the Official Solicitor and accepted as “fairly made” by the Trust are as follows:
The Midlands NHS Partnership Foundation Trust ought to have made an application to the court, in respect of the ADRT, as soon as they became aware of it[vi];
The Midlands NHS Partnership Foundation Trust should have alerted the President of the Family Division[vii] that they were treating [P] contrary to the ADRT, having determined it was in some way either: (i) invalid or (ii) inapplicable
The Midlands NHS Partnership Foundation Trust should have made contemporaneous records of their decision making in respect of the validity or applicability of the ADRT.” (More on this below.)
The OS adds that “any dispute between the Midlands NHS Partnership Foundation Trust and the NHS Staffordshire and Stoke-on-Trent Integrated Care Board as to who knew what and when is very unlikely to require resolution within these proceedings”.
Counsel said that it was a “core concern” of the Official Solicitor that there might yet be another hearing (to determine fraud and undue influence) after the 22nd and 23rd May hearing devoted to validity and applicability. The OS position was that it would be “helpful” for the two witnesses to the ADRT to be cross-examined at the next hearing to see if this might further narrow the issues, thereby obviating the need to protract this case further beyond the end of May. (The judge – as I’ve already said – decided against this course of action and stuck to his original decision.)
P’s partner
Acting as counsel for P’s partner, Victoria Butler-Cole KC pointed out that the only party still raising a challenge on the issue of validity was P’s mother, whose position seems to be that P is acting inconsistently with the ADRT remaining his fixed decision by occasionally responding to a therapist. She raised the question (to be addressed in some form by the court-appointed expert): “could someone in a PDOC sensibly be said to be doing something contrary to his ADRT?”
On applicability, “we need to know what the likely outcome is, whether he is in a minimally conscious state or has emerged from a prolonged disorder of consciousness. One year later it’s likely he will be hugely disabled and unable to do things he could do earlier. The question of whether that’s covered by the ADRT is not a legal issue – it’s a medical one, it’s prognosis. The sad reality, looking at the PDOC Guidelines, is they flag up various factors – hypoxic brain injury, more than four weeks in a PDOC, more than a year later hasn’t emerged from MCS [Minimally Conscious State]. All those factors rather strongly suggest that Professor Wade is going to come back with a rather grim prognosis. It’s unfortunate we don’t already have the expert report.”
Commenting on “the immense delay that’s already taken place”, counsel for P’s partner said that many people might not want to receive life-sustaining treatment in this situation. She urged the judge to allow the two people who witnessed the ADRT to give evidence at the next hearing, not least because it might help in establishing P’s views (and hence his best interests) irrespective of issues of the document’s validity and applicability: “At the moment best interests decisions are being put on one side, but two individuals say ‘we met up with him, we spoke with him’: why not hear from them?”. The problem with this, said the judge, is that the family’s position, in what the judge called “I hope not facetiously” their “full blooded case”, is that the living will is a fraudulent document and that “these witnesses must be part of the conspiracy if you like – and I don’t mean that in a derogatory way […] the full-blooded case would be undermining their honesty”. Calling them as witnesses without the family having yet had the time to gather the evidence they want in order to fully scrutinise or challenge them in cross examination (effectively to prove that the witnesses are telling lies) is not fair on the family, said the judge; nor is it fair on the witnesses to be cross-examined “without the case against them, including their possible involvement in a fraud, having been set out and them being given notice of that before they are cross-examined”. I could see his point.
P’s mother (and wider birth family)
Counsel for P’s mother (Parishil Patel) said he did “not accept on behalf of my clients that we can move straight from validity and applicability to authenticity” at the next hearing. He referred to the family’s position statement (which they’ve refused me permission to read) and said there are “a number of pieces of evidence we won’t have by the May hearing” which would make it “unfair” for the two witnesses of the living will to be cross-examined in court at that hearing. He mentioned one such piece of evidence – “potential forensic linguistics experts, based on the family’s concern that the way the document is worded is not something created by their brother, son, whatever”. I gather there are issues relating not only to the living will, but also to P’s last will and testament, and to a “letter to the presiding judge”. Counsel said: “if we’re going to say these documents are not authentic, we’d seek to understand the full context before cross-examining those witnesses”.
Counsel then turned to the issue of validity and applicability and suggested that they “may fall away in any event, or even if they don’t, a consensus may be arrived at, given the likely very bleak prognosis”.
Reflections
I am frankly appalled by the way the Trust has handled this case. The Trust failings as raised by the Official Solicitor (and apologised for by the Trust) have had devastating consequences for P, for P’s partner and for P’s birth family.
For many months, P has continued to receive invasive medical treatment which (if the ADRT is held to be valid and applicable) he will have lawfully refused. His partner, birth family and friends have been left in limbo, with no clear structure or pathway in place for decision-making about P, exacerbating what I understand were existing tensions between P’s partner and his birth family. The mismanagement of this case has caused incalculable harm to people who must have been shocked and distressed by P’s sudden catastrophic brain injury and subsequent prolonged disorder of consciousness. They needed accurate information and support.
As soon as the living will was before them, the Trust should have considered whether or not the purported ADRT it contains was valid within the meaning of s. 25 of the MCA 2005 and applicable to P’s current situation – and if not why not. Documents disclosed by the Trust do not contain any contemporaneous record of their decision that it was not valid and applicable.
A statement written many months later for the court by someone who seems to be the Trust’s Mental Capacity and Liberty Protection Safeguard Lead is a curious jumble of non-sequiturs that fails completely to explain in any coherent way the basis for the Trust’s view that the ADRT is not valid and “does not impact these proceedings”(!). This failure properly to document decision-making is fairly typical in my experience of supporting families in relation to end-of-life decision making. Even when we can get written reasons for Trust decisions, those decisions can be impossible to challenge (except by getting the case to court) because they are based on very poor knowledge of the law, inadequate evidence, and illogical arguments (as in the text of the statement I’ve seen in this case). In court this makes them easy to challenge, of course – but the delay, financial cost, anxiety, and fear of exposure of taking a Trust or Health Board to court makes this a daunting prospect for many people. The hope is that simply explaining that they’ve got it wrong, and here’s what they need to do to put it right, will fix matters. Sometimes it does – but often not.
In my experience, the Mental Capacity Act 2005 is, in practice, whatever distorted version of it medical practitioners, Trust administrators (and even Trust lawyers) believe it to be. That’s the version of the MCA incorporated into internal policies, guidance, memos and forms (like the version of the MCA from the Code of Practice relied on for internal policy by this Trust). I’ve lost count of the number of template forms I’ve seen put out by Trusts which misrepresent the MCA, e.g. by requiring a diagnosis before a functional test is done for capacity assessments, or by stating categorically that an ADRT will be used in best interests decision-making.
For anyone like me with experience of Court of Protection hearings concerning life-sustaining treatment and knowledge of the Royal College of Physicians’ National Clinical Guidelines on Prolonged Disorders of Consciousness following Sudden Onset Brain Injury, it is utterly bizarre to learn that, in arriving at a view about the (in)applicability of P’s ADRT, the Trust did not obtain appropriate medical evidence concerning his diagnosis and prognosis.
As recently as last month (April 2025) shortly before this hearing, the Trust’s solicitor, Natasha Sond, went so far as to query the relevance of diagnosis and prognosis and resisted disclosure of medical records. She explained that “the Trust’s view is that [P] has emerged from PDOC and that although the Trust’s statement is not provided by a clinician, the clinical assessment is “well noted within the Trust records” and in any event not the issue before the court” (quoted from the position statement for P’s partner). It should go without saying that the fact that something is in Trust records doesn’t make it true – especially when it is a diagnosis provided by a person (or MDT) not qualified to make that diagnosis.
But again, I’ve seen failure to get a properly qualified clinician to assess PDoC patients many times before (both in relation to ADRTs and in relation to best interests decision making) – partly I think because there is limited knowledge about the need for a PDoC-qualified expert or how to locate and fund one. But without expert assessment from a qualified clinician how could anyone claim to know whether or not there was a realistic possibility of a patient recovering to a “quality of life” that they would consider acceptable?
I’ve also encountered situations where clinicians and others have taken it upon themselves to argue that the patient’s version of “quality of life” (either as defined in an ADRT or Advance Statement, or as reported by family and friends) is the “wrong” definition (even “unethical”) because it isn’t their definition. And of course, it’s common for people who raise the possibility of withdrawing or withholding life-sustaining treatment to be viewed with suspicion (as was my family when we asked for my sister Polly’s treatment to be stopped).
On receipt of the approved Order from Mr Justice Poole dated 14th May 2025, I have gained some clarity about what the parties agree about and how the case is likely to play out at the next hearing.
The parties agree that:
there is no basis to dispute that P had capacity, within the meaning of MCA 2005, to make the ADRT on 3rd April 2024
if P were to continue to require 24-hour care and were unlikely to regain the ability to make decisions for himself, this is a scenario that would be covered by the ADRT
they will review their positions on the applicability of the ADRT upon receipt of the expert report of Professor Wade and will set out any points relating to its interpretation in their skeleton arguments in light of Professor Wade’s opinion concerning (1) the likely outcome for P and (2) the ‘best case scenario’ for P.
P’s mother reserves her position on whether or not she will seek to cross examine the treating clinician (I think this is who the person named in the order is?) following review of the MDT minutes and the report of Professor Wade.
Celia Kitzinger is co-director of the Open Justice Court of Protection Project. She has observed more than 600 hearings since May 2020 and written more than 100 blog posts. She is on LinkedIn (here), and also on X (@KitzingerCelia) and Bluesky @kitzingercelia.bsky.social) Full disclosure in relation to ‘conflict of interests’: In addition to having family experience with a sister in a prolonged disorder or consciousness (and her own ADRT, as discussed in the previous blog post about this case), she was a member of the core editorial group that wrote the Royal College of Physicians’ Guidance on Prolonged Disorders of Consciousness after Sudden Brain Injury and a member of the British Medical Association working party that produced the guidance on clinically assisted nutrition and hydration for adults who lack capacity. She has also (with her colleague and sister Professor Jenny Kitzinger) produced an online “healthtalk’ resource for families and training resources for healthcare professionals working with people in vegetative and minimally conscious states.
Notes
[i] Only one witness signature is required by law (s. 25(6) MCA 2005) and there is no requirement that the witness read or discuss its contents.
[ii] According to the Official Solicitor: “The regrettable procedural history of this case means that it is not a serious medical treatment case whereby the Official Solicitor is able to offer to meet the fees of an expert from her budget. The security for her costs comes from [P’s] legal aid certificate. Realistically, it would seem unlikely that an expert in neurorehabilitation will accept instruction on legal aid rates. The process of security the authority of the legal aid agency is likely to prolong matters and there is every risk that the court will have to revisit the President’s recent decision in Re K and Re S (Legal Aid: Experts’ Fees) [2025] EWFC100 and apply it to the Court of Protection”. I don’t know enough to make sense of this, but include it as a footnote for those who do, and might find this of interest.
[iii] I am grateful to parties who shared their position statements with me – they are invaluable in supporting my understanding of the case and maximising accuracy of reporting. I requested but was refused access to the position statement prepared by Eliza Sharron on behalf of the mother (and P’s birth family more broadly). I’m told that the birth family find the presence of observers and the publicity associated with this case distressing and I have taken this into account in my blog posts.
[iv] Material purporting to be directly quoted from what was said in court is based on my contemporaneous (touch-typed) notes and is as accurate as I can make it, but unlikely to be 100% verbatim.
[v] In my previous blog post I wrote: “I noticed that none of the parties (nor the judge) mentioned whether or not the document complies with s.25(5)(a) of the Act (“An advance decision is not applicable to life-sustaining treatment unless […] the decision is verified by a statement by P to the effect that it is to apply to that treatment even if life is at risk”). The Trust says in its position statement for this hearing that it does.
[vi] Given the circumstances of this case, that’s correct in my view. But cases involving ADRTs should not automatically require a court hearing where there is no controversy or uncertainty about the validity or applicability of treatment refusals. I certainly hope to avoid a court hearing about my own.
Editorial note: There is a now published judgment, following the later hearing of 22nd and 23rd May) (which will be blogged separately). Click on the link in the name of the case: Re AB (ADRT: Validity and Applicability)[2025] EWCOP 20 (T3)
This case (COP 20006397), heard by Mr Justice Poole sitting at the Royal Courts of Justice, centres around the authenticity, validity and applicability of a so-called ‘Living Will’ – specifically, those parts of it that appear to constitute a potential Advance Decision to Refuse Medical Treatment (ADRT).
The hearing I observed on 26th March 2025 was a short directions hearing. The case is back before the court on 12th May 2025 for a pre-trial hearing. It’s listed to be heard in full on 22nd and 23rd May 2025, in person, at the Royal Courts of Justice.
In this blog post I give a short account of what, in law, constitutes a valid ‘Advance Decision to Refuse Treatment’ (ADRT) then sketch out the background to the case so that others can follow subsequent hearings and blogs about them. Throughout, and especially in the last section, I reflect on this case from my own perspective, based on my personal and family experience, my volunteer work for the charity Advance Decisions Assistance[1], and my academic and policy-related research[2].
What is an advance decision to refuse treatment (and why do I have one)?
The capacitous person’s right to refuse medical treatment was recently reinforced by Mr Justice Hayden who said: “It is important to emphasise … that there is no obligation on a patient, who has decision-making capacity, to accept life-saving treatment. Doctors are not obliged to provide treatment and, perhaps more importantly, are not entitled to do so, in the face of a patient’s resistance. This reflects a mature understanding of the importance of individual autonomy and respect for human dignity” (§9 NHS Heartlands ICB v JH [2023] EWCOP 3)
An Advance Decision extends the right to refuse life-saving (and other) treatments into the future when a situation could arise where capacity to do so has been lost (e.g. due to brain injury or dementia). A very basic Advance Decision might state, for example, “I refuse a feeding tube and all other life-prolonging treatments if I am diagnosed by two appropriately qualified doctors as being in a prolonged disorder of consciousness”. This would be a valid and legally binding Advance Decision in England and Wales if it had been made by someone with the requisite capacity at the time they made it, and if it was signed, witnessed and included a statement to the effect that ‘this decision is to apply even if my life is shortened as a result’. The statutory requirements for an Advance Decision are set out in ss. 24-26 of the Mental Capacity Act 2005.
I first made my own Advance Decision to refuse life-sustaining medical treatment in 2009, and I’ve had one ever since, though I regularly update and revise it in a – possibly doomed – attempt to protect my rights.
I made an ADRT because of what doctors did to my sister, Polly Kitzinger, who sustained devastating brain injuries in a car crash, resulting initially in a prolonged disorder of consciousness (see: “Doctors wouldn’t let my sister die”). Doctors said early on that it was highly unlikely that Polly would ever leave 24/7 care or be able to make significant choices about her own life ever again. Her family was unanimous that Polly, who we’d known for almost half a century, wouldn’t want life-sustaining treatment given that prognosis. Respecting her wishes in the days and weeks after the car crash would have meant things like no CPR, no ventilation, no tracheostomy (or subsequently deflating it and discontinuing suctioning apart from comfort care) – all accompanied by no antibiotics for life-threatening infections, of which she was at very high risk during these early months. Later, once she was breathing on her own, clearing her own secretions and mostly free of severe chest infections, it would have meant withdrawing the feeding tube, or not replacing it when it became dislodged. But Polly had not made an Advance Decision to refuse treatment, and doctors believed that continuing treatment was in her ‘best interests’. We disagreed, but treatment continued. By two years after the car crash, Polly no longer needed the feeding tube: she was able to swallow pureed food spooned into her mouth, which is ‘basic care’ not ‘medical treatment’ and cannot lawfully be withdrawn. Although ceilings of treatment were eventually put in place in her best interests (a ‘do not attempt resuscitation’ notice, and no screening or treatment for life-threatening infections or illnesses), she is no longer receiving any ongoing life-sustaining treatment that could be withdrawn, and she’s robust enough to survive illnesses without antibiotics (and COVID-19 without vaccination). Sixteen years later, Polly is still alive, now fully conscious but still profoundly brain injured, in 24/7 care, with a quality of life we are all certain she would have refused in advance if she’d been able. She missed the ‘window of opportunity’ for death after severe brain injury[3].
My ADRT is an attempt to ensure that nothing like that happens to me. It states – starkly – that I refuse all life-sustaining medical interventions under all circumstances if I am not able to consent to them. I acknowledge, of course, that’s a very draconian Advance Decision and not one that most people would want for themselves. My greatest fear, though, is not that I will die prematurely as a result, but that my ADRT will not be honoured and that I will be forced to undergo treatments I don’t want and that my life will be extended by medical interventions against my will. What I’ve heard of this case so far has absolutely reinforced that fear, and (as I often do after observing end-of-life cases in the Court of Protection) I’ve already reread my own ADRT with a view to revising it (again) so as to protect myself as far as possible against some of the challenges I’ve heard raised in this case.
So, that’s the very personal perspective from which this blog post is written.
For me as someone who has made my own Advance Decision to Refuse Treatment, supported many other people to make ADRTs (via a charity) and carried out academic and policy-related research in this area, there are some deeply alarming aspects to this case. They include:
A document appearing, on the face of it, to contain some form of Advance Decision to Refuse Treatment did not make its way to doctors treating the patient for more than three months after he suffered a life-changing hypoxic brain injury[4]. By that time of course P had already been provided with a great many life-sustaining interventions which he may have lawfully refused.
On receipt of the ‘Living Will’, the Trust seems swiftly to have reached a decision that its treatment refusals were not legally binding. It did so without seeking direction from the court – despite the fact that the court has now listed a two-day hearing to make a determination as to whether these treatment refusals are or are not legally binding, which strongly suggests that there is an arguable case that they are legally binding.
At a hearing four months after becoming aware of the ‘Living Will’, the Trust asked the court to make decisions about contact between P and his birth family (the ‘Living Will’ stated that he did not want contact with some members of his family). There was also an application for deputyship from P’s partner. The Trust did not ask the judge to make a determination about the treatment refusals it contained, despite the fact that P was receiving medical treatment that seems, on the face of it, to be contrary to (what may be) legally binding refusals.
In the face of dispute with P’s partner concerning validity of the ADRT, the Trust left it to P’s partner as a litigant in person to make the application to the court for a judge to determine the issue.
A final decision about the status of P’s treatment refusals will not be made – at the earliest – until towards the end of May 2025, and maybe much later than that if the family pursues their claim that the document is fraudulent or the result of undue influence. The earliest possible date, in May 2025, is more than a year after P sustained his brain injury, and nearly 9 months after the Trust first became aware of the ‘Living Will’. During that time, he’s received multiple invasive and ongoing medical treatments which it is possible that he will be found to have lawfully refused.
The truly awful thing about this story, as I understand it so far, it that it doesn’t surprise me in the least. Regardless of whether or not the judge finds this ‘Living Will’ to include an authentic, valid, and applicable ADRT, the way the Trust (in particular) has dealt with this document gives me a horrible sense of déjà vu. It reflects and reinforces my own experience, and that of many others who seek to exercise their right to refuse life-sustaining medical treatments.
Background to the case
The person at the centre of this case (“P”), a man in his forties, suffered a severe hypoxic brain injury on 5th May 2024. For some months after his injury, he was in a prolonged disorder of consciousness. He’s now ‘emerged’, with life-changing brain damage. (CORRECTION 12 May 2025: This was what the court was told at the hearing on 26th March 2025 and so I reported it as fact. It now transpires from today’s hearing (12 May 2025) that the Trust did not have any medical evidence from a suitably qualified clinician as to P’s diagnosis and prognosis. The placement to which P has been moved state that P say that they have seen no evidence of P having emerged from a prolonged disorder of consciousness and he’s recorded there as being in a “minimally conscious state”. The court has now appointed an independent expert to assess Pand prove an opinion on diagnosis and prognosis). His physical condition has stabilised: it was said that the only life-sustaining treatment he currently receives is clinically assisted nutrition and hydration (CANH) via a PEG tube[5]. At the time of the hearing, he was about to be discharged to a placement where he would receive intensive rehabilitation, so there is a possibility of some further ‘improvement’ in his mental condition (although it is also reported that he has become more ‘agitated’ with increasing awareness). Currently, he has “fluctuating levels of awareness”. He cannot consistently communicate a ‘yes/no’ response. He’s dependent on carers for movement, continence care, and nutrition. Nobody disputes that he lacks capacity to make his own decisions about residence, care, contact with others, and medical treatment.
Usually, in this situation, all relevant decisions would be made in P’s best interests. As P has not appointed anyone with Lasting Power of Attorney[6]to make ‘best interests’ decisions for him, it is the professionals working for the Trust (and now the ICB) who have primary responsibility for ensuring that all decisions made are in his best interests.
A valid and applicable Advance Decision to Refuse Treatment stands apart from best interests decision-making: it represents the person’s own decisions and its treatment refusals must be complied with, whether or not others consider them to be in the person’s best interests. If the ‘Living Will’ made known to the Trust in August 2024, three months or so after P’s brain injury, does incorporate a valid and applicable ADRT, those decisions made by P in advance of losing capacity are lawfully binding.
I haven’t seen the “Living Will”, but snippets were read out in court and paraphrased or quoted in the parties’ position statements. Those parts relevant to treatment refusal include:
“5.1 I refuse any medical treatment in the event I have, for example, dementia or a bad brain injury causing life-long, life-changing disabilities” (section of the ‘Living Will’ read out by the judge)
The “general thrust” is that “P would not wish to receive certain life-sustaining treatments in circumstances where he was incapacitated and disabled” (Official Solicitor)
“The Living Will appears to suggest [P] would not wish his ‘life [to be] artificially prolonged’” (ICB)
“The main treatment contrary to the ‘Living Will’ is clinically assisted nutrition and hydration via the PEG feed (Trust).
It’s clear from the various position statements I’ve received from the parties that the “Living Will” has been the subject of a great deal of legal discussion and debate since the Trust learned of its existence in August 2024, but this seems to have focussed on contact arrangements and information-sharing with P’s family – which is part of the “Living Will” as a whole, but not part of the purported ADRT incorporated within it.
The ‘Living Will’ states that P would not wish to have contact with certain members of his birth family and that he doesn’t want information about him to be passed on to them. There is a suggestion (challenged by the birth family) that P was estranged from them. The judge mentioned a best interests meeting on 18th September 2024 attended by family members (including a sister and both parents) as well as P’s partner and nursing staff, at which there were “extensive and substantial disputes” about P’s wishes.
At what I think was the first attended hearing, on 20th November 2024, the judge who heard the case (the President of the Court of Protection, Sir Andrew McFarlane), dealt with the issues concerning the family[7], and with the application for deputyship from P’s partner. But the judge was NOT asked to make any determination about the (purported) refusal of life-sustaining treatment, and I understand that the existence of the ‘Living Will’ was not brought to his attention. I find this extraordinary, and I think the Official Solicitor does too:
“The Official Solicitor repeats her submission that the Trust ought to have alerted the President to the presence of the ‘living will’ and the fact it contained what, appears on the face of it, to be some form of advance decision. The Trust did not do so. […] [T]he Official Solicitor does not seek any declaration as to the conduct of the Trust. Whilst the Trust’s approach is concerning in light of section 26(5) MCA 2005, there is no value in this forum reviewing their approach, save to indicate in any judgment that this type of approach ought not to be repeated in future cases. The Official Solicitor is clear, at the very least, the Trust should have told the President when this matter was before him.”(See footnote added 6th May and revised 10th May 2025)
At the beginning of this hearing, counsel on behalf of P via the Official Solicitor (Ian Brownhill) summarised the current position like this: “The legal status of the Advance Decision contained within the ‘Living Will’ is the most pressing matter that needs to be grappled with. Does it meet the formalities required, and is it applicable to the treatment he’s receiving now?”
The position of the parties
P’s partner
The application to court was made by P’s partner as a litigant in person. Her position is that the ‘Living Will’ incorporates a valid and applicable Advance Decision to Refuse Treatment under ss. 24-26 of the Mental Capacity Act 2005. She is concerned that the Trust (and now the ICB?) is not complying with what she considers to be a binding document – at least as far as treatment refusal is concerned. She says that P’s ADRT has been “disregarded . .. with treatment continuing in a manner contrary to his clearly expressed wishes”. She says that continuing life-sustaining treatment is contrary to P’s lawfully-made decision. The feeding tube should be withdrawn to ensure that P’s “rights, wishes, and autonomy are respected”.
The Trust: Midlands NHS Partnership Foundation Trust
The Trust is the second respondent, represented by Natasha Sond. I am not wholly clear about the basis on which the Trust takes the position it does, or what evidence they have to support their position, and I did not receive a position statement from them, which would have helped my understanding.
From what Ms Sond said in court, their position seems to be that the decisions to refuse treatment are neither valid nor applicable to P’s current situation.
On validity, she said that the decisions were not valid because P had done things “clearly inconsistent with the advance decision remaining his fixed decision” (s.25(2)(c) MCA 2005). She didn’t say what those things were, or cite any case law in her oral submission.
There are two judgments in other cases relating to the sorts of things that a person might do that would invalidate their own advance decision – short of explicitly withdrawing it when they still have capacity [s.25(2)(a) MCA 2025] or subsequently conferring authority on an attorney to give or refuse consent to the treatment to which the advance decision relates [s.25(2)(b) MCA 2005). Both judgments relate to urgent hearings about blood transfusions.
In HE v A Hospitals NHS Trust[2003] 2 FLR 408 (heard by Munby J), a young woman was at death’s door and needed a blood transfusion, but she had signed a properly made advance decision (in accordance with case law prior to the implementation of the Mental Capacity Act 2005) refusing blood products. She had used a pre-printed forms provided by the Church of which she was then a member, stating “being one of Jehovah’s Witnesses with firm religious convictions [I] have resolutely decided to obey the Bible command “Keep abstaining … from blood” (Acts 15: 28, 29)”. She was unconscious and so unable to make any wishes or feelings known at the time of the court hearing, and obviously lacked capacity to make her own decision. In court, her father gave evidence of her recent rejection of her former faith: she was engaged to be married to a Muslim man, had confirmed that she would follow his faith, and had not attended the Witnesses’ meetings or services for several months. The judge decided “Since it is quite clear that the Advance Directive was founded entirely on AE’s faith as a Jehovah’s Witness – that is made clear beyond argument by the very terms of the Advance Directive itself – it seems to me that it cannot have survived her deliberate, implemented, decision to abandon that faith and to revert to being a Muslim”. The judge found that “there is simply no clear and convincing proof that the Advance Directive is still valid and applicable. The father’s evidence having raised doubts – real doubts, not fanciful doubts or mere speculations – those doubts mustbe resolved in favour of the preservation of life”. He ordered that “she must have the blood transfusions which, but for the Advance Directive, her doctors would already have given her”.
In a case heard by Poole J (Re PW (Jehovah’s Witness: Validity of Advance Decision)[2021] EWCOP 52) an 80-year old Jehovah’s Witness with dementia was discovered to have made an ADRT twenty years earlier, refusing blood or blood products, even if her life were in danger. It was properly made, compliant with – albeit pre-dating – the MCA 2005, and clearly applicable to her current circumstances: she had severe anaemia following internal bleeding due to an ulcerated gastric tumour and was at risk of death. If the ADRT was valid, then it was a binding decision. It was noted that in late 2020, she had made a health and welfare power of attorney in favour of her four children, without including any preferences or instructions to the attorneys, and without telling them that she had made an advance decision. Two of her daughters gave evidence in court that their mother had been pressurised into making her advance decision because their mother simply went along with what their (now deceased) father, a committed Jehovah’s Witness, wanted: “she is a “person who likes to please” and she wanted to be a “good wife”. They were convinced that their mother wanted to stay alive, and would choose to have a blood transfusion if she were able to give a considered and clear view. And indeed a few days before the hearing, the patient had in fact expressed the (albeit incapacitous) wish to have a blood transfusion if she would die without it (although she was inconsistent on this matter and had also expressed the contrary view). In that case, the judge decided that “if she had capacity, she would not now adhere, at least not with commitment and consistency, to the tenets of Jehovah’s Witnesses regarding blood, as she appears to have done two decades ago when she made her advance decision. Her wish to live is stronger than any residual beliefs that she should not receive blood or blood products.” He found it in her best interests to have a blood transfusion.
On applicability,the Trust position was that the ‘Living Will’ says that P “wants no life-sustaining treatment if he was to have no quality of life – rather than no life whatsoever. The degree of recovery that can be achieved cannot be determined at the point of brain injury – it takes a year, potentially three years, and some quality of life is very possible. Whether or not he will have quality of life is yet to be seen”.
P’s mother
The patient’s mother is the fourth respondent, represented by Eliza Sharron (and I believe that other family members are seeking permission to join as parties, all with the same position as P’s mother). Their position is that the ‘Living Will’ is either fraudulent (a forgery) or the result of undue influence from P’s partner. Counsel also referred to evidence that “P was suffering from anxiety and mental health issues at the time these instruments were purportedly executed”: I think this was raised as indicating the possibility that P may have lacked capacity to make the decisions about life-sustaining treatment at the time. There was some discussion about a handwriting expert to determine whether in fact it was P who had signed the ‘Living Will’. The two witnesses to P’s signature are to be contacted by the Official Solicitor.
Pressed by the judge to identify issues of validity “leaving aside undue influence and whether that’s his signature”, counsel for P’s mother said there were concerns about “whether the terminology is sufficiently tight to be enforceable”, and gave an example: “He mentioned he would not want to have CANH for the rest of his life […] but it may not be the case that he needs it for the rest of his life – just for a period of time as part of his rehabilitation”.
The ICB: NHS Staffordshire and Stoke-on-Trent Integrated Care Board
The ICB (represented by Nicola Kohn) “recognizes that the status and effect of the Living Will requires clarification as soon as possible” and seems not to take any particular position on the matter of whether or not the treatment refusals are legally binding.
Official Solicitor
Ian Brownhill is instructed by P’s litigation friend, the Official Solicitor, whose views on the Trust’s failure to inform the judge about the ‘Living Will’ at previous hearings are quoted above. The OS’s position now is that “the status of the ‘living will’ needs to be definitively determined’ so that all parties, and future treating Trusts, and the ICB, have clarity as to whether it contains a valid advance decision or not. The OS recommends a ‘staged’ approach. First the court should deal with the authenticity of the ‘Living Will’, gathering evidence as to the context in which it was made, and then determining what effect it should have moving forward. If it’s valid, the OS is “unlikely to advance a position that contradicts that document unless [P’s] condition substantially improves and his ascertainable wishes and feelings have changed”.
What next?
In terms of the timing of the next hearing, the parties seemed to take a rather relaxed approach. Only P’s partner asked for a hearing “at the earliest possible opportunity, to ensure that [P’s] lawful decisions and personal dignity are upheld without further delay”. This was clearly also the judge’s view and he arranged for the case to return “as soon as it can be heard by the court”.
The ICB initially suggested October 2025 to “give [P] an opportunity to develop any rehabilitation potential he may have and the parties an opportunity to take stock of their respective positions”. That would mean another 6 or 7 months during which P would continue to receive medical treatment he has quite possibly lawfully refused, and during which, indeed, he might cease to ‘need’ CANH and thus miss the window of opportunity to avoid having to go on living with “a bad brain injury causing life-long, life-changing disabilities” – something he seemed to reject in his ‘Living Will’.
Counsel for P’s mother suggested first a hearing for the judge to decide whether the advance decision is compliant with the legal formalities required by ss. 25 and 26 of the Mental Capacity Act 2005, and then if (and only if) it is so compliant, a second ‘fact-finding’ hearing to determine whether the document had been created as a result of undue influence or fraud. The judge saw the “logic” of that, “but the difficulty is that he suffered his brain injury in May last year, the Living Will has been known about since August last year, and there is ongoing treatment that on the face of it will be covered by the Living Will. There’s some urgency to it.” In response to the suggestion that the ‘fact finding’ hearing would need to be scheduled over several days, the judge said, “I can see this taking 5 days potentially, but without tight control by the court that means it would probably be September or October before it was resolved. But how can that be appropriate to the case?”
I think the judge eventually decided on a hearing to determine the validity and applicability of the advance decision “on the assumption that it’s an authentic document”, acknowledging that “it’s regrettable that if I find it is [valid and applicable], there may remain issues as to whether the signature is fraudulent or there has been undue influence”. It’s “regrettable” because it means further delay.
I also noted that the judge enquired, on three separate occasions in this short hearing, as to whether there was “any prospect that [P] might regain capacity” to make his own medical decisions, especially as he is about to move to a rehabilitation placement. The responses on all three occasions were equivocal, but I got the impression that nobody thought this was a strong possibility.
Reflections
I know very little about the person at the centre of this case, or why he (apparently) made a ‘Living Will’ just one month before his brain injury. I know nothing about his relationship with his partner or with his birth family, and very little about his current medical condition. I can’t discount the possibility that the ‘Living Will’ is a forgery or the outcome of coercive control or undue influence from his partner, or that it simply doesn’t apply to the situation P is now in. Perhaps, like many of the purported advance decisions I’ve seen, it’s poorly drafted and doesn’t meet the requirements of the Mental Capacity Act 2005. For example, I noticed that none of the parties (nor the judge) mentioned whether or not the document complies with s.25(5)(a) of the Act (“An advance decision is not applicable to life-sustaining treatment unless […] the decision is verified by a statement by P to the effect that it is to apply to that treatment even if life is at risk”). Perhaps the document isn’t authentic or valid or applicable. Perhaps, even if it is, the delay in implementing it will mean that he’ll recover sufficiently to enjoy whatever ‘quality of life’ he can experience post-brain-injury (with challenging implications for an otherwise valid and applicable ADRT). Perhaps he’ll even regain capacity and be able to make his own medical decisions in future. Maybe everything will turn out for the best in the end.
But listening to this hearing, my overall impression of what is going on leaves me with a terrible sense of déjà vu. It reflects my experience with ADRTs over the years – with my own ADRT, and in relation to those of others, both in my family and people I’ve supported via the charity. In my view, the fundamental problem lies in the fact that citizen-led (as opposed to clinician-led) advance care planning is deeply anomalous in the NHS context.
Clinician-led advance care planning is the norm. The policies and practices of treatment limitation originate from, and are organised in relation to, a perspective of benevolent medical paternalism whereby a clinician (or clinical team) makes an informed expert decision that initiating or continuing some treatments (e.g. CPR, CANH) is medically futile, or that their harms outweigh the benefits. In theory, these decisions depend on “difficult conversations” about the sick or dying patient’s best interests, with the patient and/or their family members – often in the face of what doctors assume will be their desperate insistence that the doctor should “do everything” possible to sustain life[8]. The research literature is awash with evidence that these conversations often do not go well – the “taboo” on talk about death and dying, and “poor communication skills” from practitioners are often held responsible. Training is routinely advised: how to ask open-ended question, display empathy, provide reflective feedback, and manage patient/family distress and ‘magical thinking’. There are numerous “guidelines”, and sample “scripts” to help practitioners with “communication techniques”: “Have you talked about the kinds of treatments you would want if you suddenly became very ill?” or ““I need your help to make sure that we give you treatments you would want to receive. Some patients would want treatment continued or started. Others would not. Do you know what you would like to do?”[9] The intended outcome of these “difficult conversations” is to improve patient care and manage risks of medical culpability: this is typically accomplished via completion of an NHS form (e.g. DNACPR, Treatment Escalation Plans, ReSPECT) which is then placed on the patient’s records as evidence that that the conversation has been had, patient “wishes” and “preferences” have been recorded, and the patient has been informed of treatment-limitation recommendations in accordance with legal requirements.
Citizen-led advance care planning sits very uncomfortably within this framework. My Advance Decision to Refuse Treatment is an exercise of my legal right to autonomy over my own body – and it feels like bucking the system. Health care professionals are taken aback and seem very ill-prepared when it’s me, not them, who initiates “the difficult conversation”, and me, not them, who decides on treatment limitation. Perhaps it’s because the “communication skills” packages they’ve been exposed to don’t cover that eventuality. Perhaps it’s because they perceive me as the ‘wrong’ kind of patient for these conversations – I don’t have a life-limiting illness or any chronic condition particularly likely to result in a sudden life-threatening episode. I repeatedly feel that I’m experienced as a difficult patient’,making intractable demands on a busy NHS service that is ill-equipped to record my decisions (especially DNACPR) in any way likely, in practice, to influence my treatment in a medical emergency. The professionals I’ve spoken to in my role as a service-user seem to be well outside their comfort zone. It takes considerable emotional labour on my part to avoid alienating or upsetting them, and to get them on board with a collaborative rather than confrontational approach to my treatment choices. I routinely find myself needing to mollify and reassure, finding ways of cajoling them into respecting my legal rights, while simultaneously trying to correct their confidently-asserted misrepresentations of the legal framework. I resent the need to negotiate these professional sensitivities in circumstances where I’m ill or anxious about upcoming surgery. I recently had a meniscus repair under general anaesthesia and found health care professionals evasive and uncomfortable with discussing my refusal of cardio-pulmonary resuscitation (“oh it won’t come to that!”) and baffled by the role of my wife not as ‘next of kin’ but rather as my attorney for health and welfare. My ADRT does not ‘fit’ with any NHS proforma. My carefully-crafted ADRT was ignored on hospital admission in favour of the DNACPR form completed by my GP (which simply says that I’m not for CPR because I have an ADRT refusing it!) – because that’s the form they’re used to, the one they understand, the one with the red border. Clinicians have even told me (wrongly, of course) that my ADRT is not legally binding because it’s not on the “proper” NHS form, because it’s not ‘signed off’ by a doctor, because my treatment refusal is too broad, or because the decisions I’ve made are not in my own best interests. One senior intensivist at a professional seminar on ADRTs announced that if I were to collapse in front of him during the course of the seminar, he would not hesitate to resuscitate me in my best interests, even knowing my decision to refuse resuscitation. (This led to a lively discussion about how other participants – some of them lawyers and ethicists – might respond to his efforts.) Professionals who should know better have equated my ADRT (especially as it includes refusal of a feeding tube) with ‘euthanasia’ or ‘assisted dying’. Some have doubted its legality and questioned its moral status.
I’m in the privileged position of having been able to share my ADRT with some very senior lawyers in the Court of Protection. It’s legally as watertight as I can make it. But having the law on my side is not enough – especially as medical professionals either don’t understand the law, or seem prepared to disregard it. For one thing, I don’t want to have to wait (like the P in this case before Poole J) for months or years after losing capacity, stuck in a hospital or care home, for a court to make a decision about whether my ADRT is legally binding.
The concerns raised about the ADRT in this case are very familiar to me. For example:
Many ADRTs are unavailable to treating clinicians. It’s not clear why treating clinicians in this case didn’t have access to the patient’s ADRT for the first three months. But it’s not unusual – in part because there is no central repository (as there is for LPAs) from which clinicians can retrieve them, but also because family and friends may not know about them, or because hospitals lose them. Eighty-one-year-old Brenda Grant was PEG-fed for 22 months after a devastating stroke contrary to her advance decision to refuse treatment because the hospital misplaced her ADRT: she was subsequently awarded an out-of-court payout of £45,000). Eighty-five year old former nurse, Jillian Rushton, was also PEG-fed contrary to her advance decision for 3 years in a prolonged disorder of consciousness because the hospital did not request the ADRT from her GP, but relied on a summary of its contents conveyed over the phone – which turned out to be incorrect, NHS Cumbria CCG v Rushton[2018] EWCOP 41). Neither of these patients had informed their adult children about the existence of their ADRTs: that’s not uncommon in my experience – people can’t face “upsetting” family members by talking about their own death, especially when they suspect there may be family opposition to their plans. All my family is of course fully aware of my ADRT and its contents and my wife and sister – who are also my LPAs – are under instruction to get it to clinicians immediately, and then to the Court of Protection in the event that my decisions are not implemented right away.
Many ADRTs are poorly drafted. I haven’t seen the purported ADRT in this case, but I know from looking at others that many do not comply with the legal requirements in the Mental Capacity Act 2005 for a valid ADRT refusing life-sustaining treatment. I’ve seen some where signatures are not witnessed (they are witnessed in this case) and several that omit the ‘magic sentence’ to the effect that the person’s treatment refusals are to apply to that treatment even if life is at risk (s. 25(5)(a) MCA 2025) (I don’t know whether or not that’s present in this case). Documents are often internally contradictory, and muddle together legally-binding treatment-refusal decisions with other decisions (e.g. about place of care, or who should visit) as seems to have been done in this case. ADRTs are likely to be more readily recognised as legally binding when they are stand-alone documents, concisely expressed, separated from ‘wishes and feelings’. It helps to title them “Advance Decision” (the statutory term) and to explicitly reference the Mental Capacity Act 2005. Advance Statements (which are not legally binding but which have legal standing (s.4(6)(a) MCA 2005)) can be in a separate document for use alongside ADRTs, addressing wishes and preferences more broadly (rather than binding decisions about treatment refusals). Amongst other things, my Advance Statement (attached to my ADRT) explains why I have made an ADRT. Here’s an extract.
Capacity to make an ADRT. Counsel for P’s mother said that P was suffering from anxiety and mental health issues at the time the document was made. I was, too, when I made my own first ADRT in the aftermath of Polly’s forced treatment: I was off work for six months diagnosed with clinical depression. Diagnosis with a mental disorder or impairment does not automatically mean that someone lacks capacity to make an ADRT, and there is an argument to be made that the statutory ‘presumption of capacity’ should apply. But rather than risk my ADRT being later dismissed by clinicians, or by the court, on the grounds that I lacked capacity to make it at the time, I sought out a capacity assessment and attached it, along with my Advance Statement, to my ADRT. This course of action was confirmed as appropriate in a subsequent court judgment, which stated that where there are reasons to consider that the person may lack capacity to make the advance decision, a “full, reasoned and contemporaneous assessment to make such a momentous decision” should be undertaken and recorded so as to eliminate the possibility of later doubt (Jackson, J §65 A Local Authority v E [2012] EWHC 1639 (COP)). I have since recommended that course of action to many others (most often to people with dementia diagnoses).
Dealing with legal ‘safeguards’. Listening to this hearing raised several ‘red flags’ for me in terms of my own treatment refusals. I heard the judge ask, three times, whether P might regain capacity to make his own medical decisions. Not only does that seem unlikely in this case, but it’s also something I don’t want considered in my own case. My ADRT already states that “I do not wish anyone to administer life-sustaining treatments… in the hope that I might subsequently regain sufficient capacity to make a decision for myself”. This is because continuing treatment in the hope that I might regain capacity would require me to go through the painful and possibly protracted process of recovery and rehabilitation – quite possibly without regaining the requisite capacity in the end. And it could then turn out that (as happened to my sister Polly), the medico-legal ‘window of opportunity’ for death had closed, and I’d be trapped with a quality of life I would not have wanted. I also note that counsel for the Official Solicitor says that if P’s ADRT is found to be valid, then “the Official Solicitor is unlikely to advance a position that contradicts that document unless [P’s] condition substantially improves and his ascertainable wishes and feelings have changed” (my emphasis). I know people have different perspectives on this matter – and it’s common for people to tell me that they don’t want to make an ADRT, because they don’t know how they would feel as the incapacitous person they might become, or what they might want in that situation. Obviously, I also don’t know how I’d feel with dementia or brain damage that caused me to be unable to make my own medical decisions: I know some people are content or even happy to be alive in that situation, and I can’t rule out the possibility that I’d be one of them. But it remains my hope that my ADRT will prevent me from ever being in this situation. It had not initially occurred to me that the effect of s. 25(2) MCA 2005, which provides that the ADRT will not be valid if the maker has done anything clearly inconsistent with its remaining her fixed decision, includes actions done AFTER losing capacity. I want my capacitous decisions to override my non-capacitous wishes and feelings. Unfortunately for me, the law seems not to be on my side about this. I am in the process of drafting my ‘wishes and feelings’ in relation to both of these points (treating me in the hope I regain capacity; allowing my non-capacitous wishes to invalidate my ADRT) for inclusion in my Advance Statement’ in the hope that – even though they cannot bind the court – they will be used in any ‘best interests’ decision-making about me. I’m also trying to forestall any possible argument that my ADRT was written under coercion or undue influence (though it’s been pointed out that my strongest safeguard in that respect is my public profile as someone who advocates for ADRTs and publicises my own advance decisions and the reasons for them)..
Delay and the ‘window of opportunity’ for death. This case has been characterised by delay. Delay in producing the ADRT. Delay in asking the court to rule on its authenticity, validity and applicability. And now inevitable delay (despite the judicial sense of urgency) caused by the need to gather evidence and prepare for a next hearing. Delay has even been lauded as offering P the opportunity to “develop any rehabilitation potential he may have” (ICB). Waiting to see how much someone will recover after severe sudden-onset brain injury, hoping that they might regain what they could experience as ‘quality of life’, and even that they might become able to make medical decisions for themselves, can all sound fine in theory. In practice, it can mean a person enduring the pain and suffering of intensive care and rehabilitation for an uncertain outcome – something they might not choose to do. For myself, in my late sixties, there are diminishing returns: I’m ready to cut my losses and choose to forgo the opportunity of longer life, especially one without capacity and without an exit route. My sister Polly’s additional 16 years of life (so far) is certainly not what I want for myself. That is why I have simply refused all life-sustaining medical treatment if I cannot consent to it, in the hope that my life will be shortened as a result.
This case has already raised disturbing issues about how ‘Living Wills’ are handled by clinicians and Trusts. As it goes through court, it will raise important issues about the authenticity, validity and applicability of Advance Decisions to Refuse Treatment. All of us who care about making our own decisions at the end of life will benefit from understanding what the judge decides and why.
Celia Kitzinger is co-director of the Open Justice Court of Protection Project. She has observed more than 600 hearings since May 2020 and written more than 100 blog posts.She is on LinkedIn (here), and also on X (@KitzingerCelia) and Bluesky @kitzingercelia.bsky.social)
FOOTNOTE ADDED 6th May 2025 andREVISED 10th May 2025
On 6th May, I received information from Ms Natasha Sond (representing the Trust) that the Official Solicitor was not accurate on this point and that “the Trust concerns about the reliability of the living will was flagged to Sir Andrew McFarlane by myself on behalf of the Trust at the hearing on the 20th November 2024, with the post hearing sealed order making reference to the living will in the recitals twice. One recital specifically references the Trust concern about the reliability of the living will which was raised by myself in the hearing of the 20th November 2024″ (email, 6th May 2025 12.14pm). The Trust solicitor also forwarded the email she’d sent to me to the Official Solicitor (i.e. to the counsel and solicitor acting on P’s behalf in this case), flagging up the extract I’d quoted as an inaccuracy in the OS’s Position Statement. She’s now reported back that the OS responded to the effect that their understanding was that “the President was made aware of the dispute as to the Living Will but wasn’t alerted to the ongoing treatment which appeared to be contrary to the ADRT“. This, says the Trust’s solicitor, “is not disputed” by the Trust. So my understanding is that the ‘Living Will” was filed with the court as part of the Trust’s application (along with some concerns about its “reliability” [sic]), and that it was referred to in recitals to the President’s order (I’ll confirm that point on receipt of the order) but – crucially from my perspective as someone with an ADRT – nobody alerted the President to the fact that the Trust was providing medical treatment to P that he had apparently refused in his ADRT. I appreciate that there is a significant difference (for the Trust) between, on the one hand, not alerting the President to the ADRT at all (my initial and erroneous understanding) and, on the other, alerting the President to the existence of the ADRT but not to the ongoing treatment apparently contrary to it (which the parties now agree is what the Trust actually did). From my perspective, though, the difference is insignificant, since neither course of action addresses the crucial issue of of the Trust’s continued provision of possibly unlawful medical treatment. This situation would be my worst nightmare come true if a Trust did this in relation to my own ADRT. It is my strong opinion that the treatment-refusal implications of the document should have been front and centre of their concern as soon as the ADRT came to light in August 2024 and an application to determine the validity and applicability of the contested ADRT should have been made by September 2024 as a matter of urgency. As a separate issue, Ms Sond has confirmed that “the living will was filed with the court as part of the applicants application“, which leaves me deeply concerned that the President had access to the ADRT and did not observe for himself that there was a problem with ongoing treatment. I would have hoped that a judge in the Court of Protection would have spotted a discrepancy between the treatment being given to a patient and the patient’s apparent refusal of that treatment, without needing to be alerted by the Trust. (It’s the absolutely FIRST thing I’d have done – whatever the application said – as soon as someone mentioned a ‘Living Will’! )
Postscript 13th May 2025
I have now received the approved Order made by Sir Andrew McFarlane on 20th November 2024. The court heard only from the applicant (P’s partner) as a litigant in person, and from Ms Sond on behalf of the Trust. Both the ICB and the OS had been put on notice of the proceedings and the judge ordered that P’s biological family should be notified too. The application related to the partner’s concerns “that decisions about [P’s] residence, care and contact with family are being made contrary to [P’s] wishes and feelings expressed in his ‘living will’” (recital C). The focus seems to have been on placement options and the Trust confirmed that it would make decisions in P’s best interests and make an application to the court in the event of any dispute. Another recitals says: “The Trust confirmed that the contention between [P’s partner] and [P’s] biological family is noted however there is currently some level of uncertainly as to the reliability of the ‘living will’” (recital F). The notion of ‘reliability‘ is odd in this context, and the words ‘advance decision to refuse treatment’ do not appear. The matter was listed for a next hearing before Poole J on 15th January 2025. At that hearing, the Trust was ordered to file evidence addressing “whether the Trust consider the living will is valid within the meaning of section 25 of the Mental Capacity Act 2005 and if not, why not“. This does not seem to have engendered any sense of urgency. At the hearing I observed, it was clear that the Trust was proceeding on the basis that the ADRT was not valid or applicable to P’s current circumstances, but the evidence on the basis of which they had taken that position was not at all clear (either from their statements in court or from their position statement when I eventually received it). There was also no medical evidence before the court as to P’s condition (diagnosis or prognosis), despite this being a relevant issue for deciding applicability.
[1] This charity no longer exists, but I strongly recommend Compassion in Dying for anyone wanting to find out more about end-of-life decision making, and especially how make a valid ADRT.
[3] Kitzinger J and Kitzinger C. 2012. The ‘window of opportunity’ for death after severe brain injury, Sociology of Health and Illnesshttps://doi.org/10.1111/1467-9566.12020
[4] At this point there is, said the judge, an “absence of evidence to explain the failure to produce it [i.e. the ‘Living Will’] for three months”
[5] I suspect from what I know about the treatment provided to patients during and after emergence from PDOC that in fact other treatments are being provided that could be considered ‘life-sustaining’ treatments (e.g. physiotherapy and suctioning to prevent chest infections, various medications). I understood from what was said in the hearing that there are no treatment limitations in place with regard to either cardio-pulmonary resuscitation or antibiotics (in the event that either might be medically indicated), so these life-saving interventions might yet be provided at any time.
[6] There is an application for deputyship pending from P’s partner, which the court cannot determine before having evidence as to P’s capacity to execute a Lasting Power of Attorney (LPA). Although, “put frankly, there appears little prospect of [P] having the capacity to do so at this time” (OS), the court ordered back in January 2025 that a Special Visitor should assess his capacity – but this has not yet happened. Note that a court-appointed deputy (unlike an LPA) cannot make decisions about life-sustaining treatment.
[7] The parties agreed that the wishes expressed in the “Living Will’ about matters such as contact with family members, restriction of information about P to some family members, and a preference not to move to certain types of care setting are relevant to ‘best interests’ decision making under s.4 of the Mental Capacity Act 2005, but do not (cannot, by law) represent P’s binding decisions.
I have recently discovered, at a different hearing for contempt, that the criminal standard of proof (of beyond reasonable doubt) is required for both criminal and civil contempt. That is different to the usual standard of proof in the Court of Protection, which is the civil standard of proof: on the balance of probabilities (whether something is more likely than not), sometimes called the ‘51% test’.
The person committing the contempt is referred to as the ‘contemnor’ (or the ‘defendant’ in relation to their role in proceedings as a person against whom an application is made). The terms ‘committal hearing’ and ‘contempt hearing’ seem to be used interchangeably in the literature. I have used ‘committal hearing’ and ‘contempt proceedings’ in this blog.
The Open Justice Court of Protection (OJCOP) Project has blogged about several hearings involving contempt of court, here, here, here and here. Cases mostly involve family members or friends of P who are alleged to have breached the orders of the court. They might have contacted (or behaved in other ways towards) P contrary to court orders or revealed to others aspects of the Court of Protection case that they weren’t meant to, such as P’s name. They might have broken an ‘undertaking’ (a promise) that they made to the court.
It’s important for anyone caught up in Court of Protection proceedings to understand what can happen if they breach court orders or undertakings – and why what can happen ranges all the way from no penalty at all as in this case (and also in Esper) to immediate prison sentences of some months (potentially up to two years).
The case of Melvin Wright
On 3rd February 2025, Melvin Wright was found, by HHJ Hilder, to have been in contempt of court.
Sentencing was adjourned until 22nd April 2025. This was how the listing appeared on the First Avenue House website:
Allowing P into his flat (including overnight) in December 2024, unsupervised. He did not inform the Local Authority that she was there and the police located her.
Replying to messages from P during the prohibited timeframe (which at the time was 6pm – 9am)
Communicating with P about the Court of Protection proceedings
Making reference to P’s sexual activities in response to messages that she herself sent Mr Wright about her sexual activities.
All of these acts are contrary to a court order served on Mr Wright in 2024.
In this blog I will report on what happened at the sentencing hearing. It’s important to say that I have not observed any of the welfare hearings in this case (which are about contact between P and Mr Wright, and about residence for P). So, I don’t know the context regarding restrictions on Mr Wright’s contact with P, why he is said to pose a risk of harm to her, or anything of the history of their relationship.
I didn’t really know what to expect of this hearing. I have observed one previous sentencing hearing, which was in person and I had been following the full case so knew a lot about the circumstances. This was different, and my involvement as an observer had started with the 3rd February 2025 hearing when (supported by the OCJOP Project), I submitted an application to ‘vary’ (change) the Transparency Order to permit the naming of the defendant. The previous blog details that process and why being able to publish the names of defendants in committal cases is an important part of open justice.
Before the sentencing
I was joined by three other observers (two remote and one who was at the hearing in person). The hearing started at 2.06pm and HHJ Hilder explained that P herself had no representation, her counsel having requested and been excused from the hearing by the judge. A legal official was instead present on behalf of P’s representatives, ‘on a noting brief’ said the judge.
Mr Wright was joined to the link from his home, and he was supported by a legal professional who was sitting beside him. He confirmed that he could hear the judge and he appeared calm and collected to an outside eye. Of course, he might well have been feeling extremely nervous, given that this was a hearing to sentence him for breaching court orders – which can be a sentence of imprisonment.
HHJ Hilder then noted the presence of observers, asking us all, one by one, to turn on our camera and confirm that we had received and understood the court order concerning “anonymisation of defendant” dated 3rd February 2025. Then she said: “To all observers, thank you for taking the time to observe today”. She also asked Ben Harrison (again representing Mr Wright) to send all observers a copy of his Position Statement for the hearing, to assist our understanding of proceedings. This was very welcome.
Ben Harrison drew the attention of HHJ Hilder to the legal framework for considering what sentence to impose, and also to case law in support of his submissions regarding mitigating factors for his client. I found the explanation of how a breach of court order might be assessed, and a sentence decided, very interesting (and was later supported in my understanding by the Position Statement which was helpfully emailed to me by the court clerk straight after the hearing). I know nothing about how these decisions are made and was wondering about the purpose of a committal and sentencing in a case such as this. Helpfully, Ben Harrison emphasised that “in civil contempt cases the focus is on ensuring future compliance”. So, the purpose of bringing such cases to court, making findings of contempt and sentencing the contemnor, is to try to make sure the person obeys the court orders in future.
What can the court do in relation to sentencing in the Court of Protection?
On behalf of Mr Wright, Ben Harrison submitted that his client’s breaches fell into the following sections: Level C for culpability – ‘low culpability, minor breach/es’ and Category 2 for harm – ‘cases falling between categories 1 and 3’
Mr Harrison explained the position:
Mr Wright is 89 years of age, and he wishes me to emphasise that he loves P dearly. He had no intention to cause her harm or distress. That example is a Category 2 case: no intention to cause harm or distress. Addressing culpability in more detail and his witness statement from the last hearing – he takes 18 tablets including Tramodol, he can be more sleepy and forgetful, it makes it more difficult to comply with the court’s orders. He asks the court to take this in mind when considering culpability.
There are no supervision contact arrangements between Mr Wright and P at the moment: that’s been unsuccessful. When Your Honour handed down her judgment last year, the court had in mind that there would be some sort of supervision contact arrangements in place. Mr Wright has been willing to comply … without straying into other matters … I am not sure WHY these arrangements have been unsuccessful.
I believe he said to you he 110% supports the Local Authority package of care for P. His aim is to ensure P is kept safe. It is fair to say he is very much on a journey as to how he is to interact with P in order to help her. [….] Contact is to be restricted […] this is in tension with his concerns […] – if he turns her away he thinks she will believe he has abandoned her at this later stage in his life.”
Step two, explained Ben Harrison, is the ‘starting point and range of sentence’. The sentencing framework from the same document is replicated below. The ‘starting point’ suggested by counsel for Mr Wright was 2C: ‘adjourned consideration’ (which he acknowledged is what HHJ Hilder had already done at the previous hearing on 3rd February 2025).
According to the Civil Justice Council’s guidance document, there are five options open to a judge ‘when faced with a breach of an order under the 2014 Act’. These are:
An immediate custodial penalty
A custodial penalty which is suspended
Adjourning punishment
An unlimited fine
No order
Ben Harrison explained to the court that, if Mr Wright’s breaches are deemed to sit in Category 2C (above) the options for the court ‘range up to one month imprisonment’, and that the court is ‘is entitled to take into account mitigation’.
In mitigation, it was submitted that Mr Wright is seriously unwell and under the care of a palliative care team. He regrets and repeats his apology to the court for the breaches; he has attended the committal hearings including when he was unrepresented; the Local Authority has not filed any evidence of further contempt since the committal hearing on 3rd February 2025. Mr Wright was said to have ‘abided by the court’s injunctions and proved himself capable of doing so in future’ – which is the purpose of contempt proceedings in the Court of Protection.
Ben Harrison emphasised that any sentence should be ‘just and proportionate’ and aligned with the guidelines. He had ‘impressed upon Mr Wright’ the need to comply with court injunctions and interestingly, suggested that ‘the process itself has secured […] his compliance and achieved the purpose of proceedings’.
I thought that Mr Wright’s counsel did a very impressive job, not only of summarising the legal framework and case law for the court, but of drawing together all strands of the committal part of the case, humanising the situation for the court on behalf of his client, and drawing attention to the messiness of contact arrangements that seem to have gone wrong through no fault of Mr Wright’s. At the time of the hearing, he was not in supervised contact with P, and there had been several aborted attempts.
HHJ Hilder asked about Mr Wright’s financial situation, which was not clear, but definitely not one of surplus income.
The ‘Sentencing’
HHJ Hilder was very stern and emphatic delivering the sentence. Perhaps that’s how all judges are when they are sentencing someone. It was clear she wanted Mr Wright to understand the seriousness of his breaches of court injunctions.
Comparing my notes against the published judgment, I’m pleased to see how accurate they are – albeit with bits missing because I couldn’t keep up with the speed of her delivery. I also have some observations that are not in the published judgment. For example –
Judge: Mr Wright – I am speaking to you directly as far as I can. Can you hear me?
Mr Wright: Yes I can, Judge.
That little piece of human interaction, which shows that the judge wanted to ensure that what she said was heard by the person it most concerned, is missing from the published judgment.
I also picked up features of the judge’s speech that don’t come across in the published judgment – particularly the stress she placed on particular words, as here:
Judge: Today I am concerned with the very serious matter of ensuring that court orders are obeyed. YOU have admitted breaching a court order, so I am considering what penalty should be imposed. Your barrister has very helpfully set out a summary of the legal framework that applies to the legal position [….] I adopt that framework and in particular Lovett against Wigan Borough, paragraph 33 of the judgment. I am reminded that the emphasis today is on the importance of ensuring that there is compliance in the FUTURE with court orders.
The judge then ran through the orders made on 21st October 2024 that Mr Wright had admitted breaching (in the published judgment those are §3 (the orders) and §4 (the admissions of breach), before summarising them preparatory to considering the penalty.
In the published judgment at §5 the judge says “[t]here are four heads of admission”, which sounds very legalistic. In the spoken judgment, my notes record her as saying: “So, four admissions have been made” – which both indicates (via “so”) that she’s summarising what has gone before, and is closer to ordinary conversational spoken English (though still in the passive tense, where “so, you’ve made four admissions…” would have been used to convey that she was (as she said earlier) addressing Mr Wright directly. Also, both in the written judgment and in the oral judgment in court, the judge described these admissions as “very serious”, but in my notes I have capitalised and bolded those words to mark emphatic delivery (“They include VERY SERIOUS admissions that you allowed P to stay at your flat).
I was pleased to note that I’d captured the two references to case law in §4.7 of the published judgment (Dahlia Griffith and Poole J in Macpherson). This was possible for me because I already knew of both cases and I’d watched the committal hearing before Poole J concerning Luba Macpherson and blogged about it here. For many court observers, the names of cases whizz by in an undifferentiated blur – as they did for me in the early days. But understanding the case law that judges rely on is very important for observers – and it’s another reason why we need to be supplied with Position Statements.
My version of what was said at the end of the judgment is virtually identical to the published version (§16 and §17), save for the fact that I noted the emphasis that HHJ Hilder put on the words ‘No Penalty’:
Judge: Finally, I bear in mind that it is proportionate and just that the sentencing for your breaches recognises the court’s preference to allow you an opportunity to end your life respectfully and for [P] to see that opportunity to be given.
In conclusion, regarding the finding of breaches made on the 3rd of February, today I formally impose NOPENALTY for those breaches. The injunctions stand. This court expects you to conduct yourself now in such a way that no further committal proceedings will be required.
The judge checked with counsel for Mr Wright whether there was ‘anything arising from that?’. And Tony Harrop-Griffiths (representing the Local Authority, the London Borough of Camden) confirmed that ‘in general terms’ the Local Authority did not disagree with the sentencing.
Ben Harrison had asked the court to consider a couple of other issues – which I won’t report on here – and indeed the judge (whilst agreeing to briefly address them) said that ‘generally speaking we try to keep committals separate’.
And with that, HHJ Hilder said ‘Mr Wright, thank you and good afternoon’.
Mr Wright looked quite surprised at the sudden departure and said ‘You have gone!’.
The hearing lasted 49 minutes.
Reflections
As I said at the start of the blog, I haven’t observed any of the welfare hearings in relation to this case. So, I don’t know what are said to be the risks of harm to P from Mr Wright. I don’t think I am in a position to comment on the fact of contempt allegations being brought against him, or the committal and sentencing of this man.
It has become clear to me, from the two hearings in the committal element of the case, that P’s situation is complex and Mr Wright sometimes finds himself in situations with P that are not of his making. This mitigating factor, along with others such as Mr Wright’s admission to the breaches, the current and ongoing obeying of court orders and his health status, were taken into consideration in the judge’s sentencing.
The guidance from the Civil Justice Council referenced earlier, discusses the Working Party’s findings into the consistency of penalties for anti-social behaviour in the civil courts (the word ‘sentencing’, I now realise from this helpful document, is applicable only to criminal courts, and the word ‘penalty’ should be used for civil contempt):
It is of legitimate public interest to know about penalties imposed for contempt of court in the Court of Protection, including the range of penalties imposed, whether they are consistent across cases (although, as the guidance makes clear, each case has to be weighed on its own facts) and how many contempt of court cases (with and without penalties) are decided in the Court of Protection. As we said in our submission to the Ministry of Justice Law Commission Consultation on contempt of court, the lack of systematic data collection about contempt proceedings and the failure to publish Transparency Data in relation to contempt of court is “clearly a problem for a court with aspirations to transparency and should be remedied immediately” (“Contempt of court proceedings: Are they transparent?”, section 2)
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 team of the Open Justice Court of Protection Project and has published dozens of blog posts for the Project about hearings she’s observed (e.g. here and here). She is on X as @DocCMartin, on LinkedIn and on BlueSky as @doccmartin.bsky.social
On Wednesday 16th April 2025, the UK Supreme Court handed down judgment in two cases. One of them, For Women Scotland Ltd v The Scottish Ministers, has received a huge amount of attention in the press and in social media. The other has not.
It is nevertheless a very important judgment that considers when and how freedom of expression can justifiably be limited. Two cases were joined for this appeal – and there was only one issue before the Supreme Court: was it right for injunctions that prohibited the identification of medical staff to be extended indefinitely?
The first case concerned Zainab Abbasi, who was born in 2013 “with a rare and profoundly disabling neurodegenerative disease, to which was added lung damage as the result of her contracting swine flu in 2016”(§9)[1]. She was placed on a palliative care pathway, and her parents disagreed, considering that active treatment was more appropriate. She died on 16th September 2019, before a full hearing. The High Court injunction (“the Abbasi injunction”) prohibited publication of the names of four clinicians (all consultants) (§21-25).
The second case concerned Isaiah Haastrup, who was born in February 2017. “[D]ue to clinical negligence he suffered oxygen deprivation during birth which led to grave damage to his central nervous system” (§14). He was dependent on a ventilator, and his parents opposed withdrawal of the ventilator. In the High Court, Mr Justice MacDonald found that it was in the child’s best interests for that treatment to be discontinued, and he died on 7th March 2018.
This High Court injunction (“the Haastrup injunction”) was far more wide-reaching than the Abbasi injunction. It restricted publication of the names and/or personal details of clinical staff involved in ante-natal care and labour; clinical and nursing staff and non-clinical staff who cared for Isaiah; any second opinion clinician; and any clinical staff that were consulted or received communication about a possible transfer (§26).
In 2020, the two families applied to discharge these injunctions, and Mr Justice Cobb ordered that the applications be heard together. The respective Trusts cross-applied for the injunctions to remain. In the High Court in June 2021, Sir Andrew McFarlane, the President of the Family Division of the High Court, dismissed the applications of the families, allowed the applications of the respective Trusts, and extended the injunctions indefinitely.
He found that the article 8 rights (to a private and family life) of the treating clinicians took priority over the article 10 rights (to freedom of expression) of the parents. This was particularly because of the risk of abuse and harassment of those clinicians. You can read that judgment here: [2021] EWHC 1699 (Fam).
The parents appealed to the Court of Appeal and, at the end of March 2023, that court allowed the appeal and discharged the injunctions. You can read that judgment here: [2023] EWCA Civ 331
The treating NHS Trusts then appealed that decision to the Supreme Court and the Court of Appeal “stayed” (i.e. suspended implementation of) its order pending the outcome of the appeal. This was because if the families had gone ahead with publicly naming the relevant clinicians and nursing staff involved in their children’s care there would not have been much practical point in the Supreme Court making a decision about whether or not the Court of Appeal was right to discharge the injunctions. By then it would have been too late to continue the protection of those people’s identities – the cat would have been out of the bag. It is usual practice, when at appeal is anticipated, to require the parties to ‘maintain the status quo’ while waiting for the judgment of the higher court (see, for example, the stay granted by the Court of Appeal in the Andy Casey case, which I wrote about here: “Application to appeal the finding that Andy Casey is dead “)
The case was then heard by the Supreme Court over two days in April 2024. You can watch the recording of those hearings on the Supreme Court’s website.
In its judgment, handed down more than a year later in April 2025, the Supreme Court dismissed the appeal. They found that the Court of Appeal were correct to note “the high value attached to freedom of expression both under the common law and under article 10 of the Convention: a value which, as the Court of Appeal observed, is reflected in the use of adjectives such as “convincing” and “compelling” by both the European court and domestic courts to describe the nature of the considerations required to justify restrictions” (§168).
The stay on the order made by the Court of Appeal was therefore lifted. In other words, there is now no prohibition on the identification of clinicians.
In this blog, I will first consider the concerns raised by some doctors – particularly the Intensive Care Society – about the effect of this judgment. I have some sympathy but think that the Supreme Court ultimately provides important safeguards.
I will then explain why I welcome the judgment. Indefinite injunctions are a significant infringement of the rights of family members to talk openly about their experience of healthcare systems. It is only right that any interference in the exercise of that right is for the shortest time possible.
Finally, I will consider what the implications are for the Court of Protection.
A consideration of risks to clinicians
Some doctors have expressed serious concerns about the implications of this judgment. For example, the Intensive Care Society describes it as setting “a worrying precedent”. They say:
“As we believe that decisions reaching the courts for scrutiny are never made by a single individual, we are concerned that it is unreasonable — and potentially harmful — to single out and name one person as the ‘face’ of a collective decision.”
This concern is a fair one. Decision-making is a complex process that rarely, if ever, is the sole responsibility of one person. Indeed, if one person was identified as the prime mover in any one decision, the risk of abuse or harassment to that person could be huge.
Clinicians are already making very difficult decisions in cases such as these: the risk of harassment could have a chilling impact both on their ability to undertake their work as well as on their personal wellbeing.
I nevertheless don’t think that the Intensive Care Society gives the Supreme Court enough credit.
To begin with, its judgment does not prohibit the use of the reporting restrictions for the duration of court proceedings. In fact, the justification for the restrictions at this stage do not need to be contextual; that is to say, the application for them does not need to be based on a specific risk.
The court acknowledges that it would be perfectly reasonable, at this stage, for restrictions to be justified on the basis of evidence concerning the risks of abuse and harassment from earlier cases (see the comments on “generic evidence” at §155).The primary focus will need to be on collating evidence about “the determination of the life or death question which the proceedings have been issued to have speedily resolved” (see §42).
In other words, the proper focus of the clinicians is the welfare of the child they are caring for. This is a point that is emphasised by Lord Sales in his concurring judgment (see §183-203). It’s not altogether clear why Lord Sales felt compelled to offer a concurring judgment, particularly given that he emphasises what the majority judgment says rather than posing a major difference in reasoning. Whatever the reason, my suspicion is that this may explain the length of time (a year) between hearing and publication of the judgment (which Joshua Rozenberg also suggests).
I was also particularly struck by this passage from the judgment: “[t]he fact that the internet is awash with harassment and vilification is no reason why anyone should be expected to put up with it, if it reaches a level which constitutes an interference with their legal rights” (§157).
It seems surely right to me that the very fact of abuse does not mean that somebody has to put up with it. Where there is a real risk of that abuse, it also seems right that the court should be able to protect individuals from experiencing it.
The British Medical Association, which acted as intervenor (i.e. not a party but nevertheless with permission to address the court) in the Court of Appeal and Supreme Court, has expressed its own concerns. Similar in substance to that of the Intensive Care Society, their press release also notes that:
“The public attention and response to these cases does not simply disappear once proceedings have ended in court and doctors who are simply doing their job in the best interests of their patients should not live in fear for their privacy or their safety.”
The Supreme Court was alive to this issue, and it does not hold that these injunctions should simply fall away at the end of proceedings: “A reasonable duration would be until the end of the proceedings and, in the event that they terminate with the child’s death or the grant of the declaration sought, for a subsequent cooling-off period” (§182(10), see also §66).
However, any extension beyond a cooling-off period must be carefully justified. This is because, with the passage of time, the risk of abuse and harassment will most likely reduce. While not minimising the grief that the parents will feel, the court (I think accurately) notes that, “the emotional reaction of the general public is unlikely to be as strong, especially if publicity was restricted while the child was being treated […] By contrast, the effect of the restraint upon the parents’ freedom of expression is likely to be much more enduring in its consequences. The sense of injustice engendered by being prohibited from speaking freely about the loss of their child may well be lifelong in its effect” (§46, my emphasis).
The court also doesn’t completely rule out the possibility of indefinite injunctions. However, the court found that, if injunctions are being sought at the end of proceedings and the cooling-off period, the Trusts would have no legal basis for applying for these injunctions. Instead, a new injunction would need to be made, an application for which must be brought by the individual clinicians (or representatives of said individuals) concerned (see §181).
If new injunctions are being applied for, there is a need for “specific evidence” (§182(13)) about the risk posed to clinicians if their identities became known. The court notes that, “it appears to us that it would be difficult to justify the continuation of the injunctions in the absence of evidence demonstrating a real and continuing threat of a serious nature” (§181). This is in contrast to the injunctions made at the start of active proceedings, which can rely on speculation of the risk of harassment and abuse based on previous cases.
The relevant court then needs to engage in a balancing exercise, which the Supreme Court provides a mini checklist for:
Is there an interference with a relevant right, namely article 8 or article 10?
Does the interference with that right pursue “a legitimate aim”; legitimate referring to whether it can be justified in accordance with the law?
Is that interference “necessary in a democratic society”? §182(15)
This analysis seems to me to be in line with the liberal philosopher’s J.S. Mill’s Harm Principle: that speech should only be curtailed in the event that it may cause significant harm.
Mill provides the example of somebody expressing a view that corn-dealers are starving the poor. This opinion might be wholly without merit but Mill does not think the right to express it should be curtailed. That changes, however, if the same opinion is repeated to a baying mob who have assembled outside a corn-dealer’s home. In that event, the risk of harm is so great that the speech can reasonably and morally be curtailed. In other words, curtailing that speech in that context is “necessary in a democratic society”.
Why I support the Supreme Court’s decision
The Supreme Court expands further on point C), above. They say that, “the need for any restriction of freedom of expression must be established convincingly. It must be justified by a pressing social need, and must be proportionate to the legitimate aim pursued” (§182(16)).
I think this is an important clarification on the limits of interference in freedom of expression. In my view, the rights of families to freely discuss their experiences is of great social importance. Taking into account the injunctions on speech during proceedings, and then for a cooling-off period, the need for indefinite restrictions on speech will only exist in limited circumstances. I do not think that there will never be a situation that demands this; instead, I imagine it will be very rare indeed.
As the Supreme Court notes, medical clinicians are “public servants acting in an official capacity” and that “the requirements of protecting them [from criticism] have to be weighed against the interests of freedom of the press or of open discussion of matters of public concern” (§176).
Furthermore, “the treatment of patients in public hospitals is a matter of legitimate public interest, and that the medical and other staff of public hospitals are public figures for the purposes of the [European] Convention [on Human Rights], with the consequence that the limits of acceptable criticism are wider than in the case of private individuals” (§179).
The Intensive Care Society has said, “It is disappointing that clinicians working for the NHS rather than in a private capacity now seem to have to meet a higher threshold to prove their own rights outweigh those of the public interest, simply because they work for the NHS”.
I do agree that it seems odd for a specific place of employment to mean that somebody needs to meet a higher justification for protection. However, as Alex Ruck-Keene KC (Hon) points out, “even if the limits of acceptable criticism may be wider than in the case of private individuals, that does not give carte blanche to those who wish to criticise clinicians and other hospital staff who may – in many cases – not be in a position to be able to respond”.
That being said, the NHS is a public institution that is funded by taxpayers. Much like civil servants, those who work for it do need to be able to justify why the public cannot know who they are. In fact, the Supreme Court points out that a member of the public with a functioning knowledge of the internet would be able to find out the names of individual clinicians anyway, and perhaps even deduce who is involved in certain cases, once they know the name of the hospital (§170).
I also think it’s important to point out that the absence of a prohibition on publicly naming an individual does not necessarily mean that journalists or members of the public will name them. I haven’t seen any reporting of the names of the clinicians. Nor has Lucy Reed, writing for the Transparency Project. This may be because it’s in the pipeline; it may be because the clinicians have sought injunctions as the Supreme Court says should happen; it may be because they’re not going to be publicly named.
What is at stake is the principle of transparency, and the freedom of family members – those most closely affected by decisions taken by clinicians and the court – to talk freely about their experience if they want to. It should not require a costly and lengthy court application to be able to do that.
What does this mean for the Court of Protection?
We need to be cautious about reading too far into this because the court was concerned with injunctive orders made in the context of cases concerning the withdrawal of life-sustaining treatment from children. However, the judges do acknowledge some of the issues are raised in cases concerning adults. For example, at §172, the court notes that, “the moral and ethical questions surrounding the treatment of children and adults in positions analogous to Zainab and Isaiah generate intense public debate. Naming the clinicians involved is relevant to that debate” (my emphasis).
It seems to me, and Alex Ruck-Keene KC (Hon) notes the same, that this will have implications for life-sustaining treatment cases in the Court of Protection. Indefinite injunctions in those cases will need to be based on cogent evidence rather than a default imposition.
I am not actually sure that indefinite injunctions are the default position in life-sustaining treatments heard before the Court of Protection. In a blog about a case concerning an application to withdraw life-sustaining treatment, Celia Kitzinger notes that the Transparency Order prohibited, “the identity of the treating clinicians, which is less usual and which – when this restriction is applied – is often lifted at or shortly after the end of a hearing, or after the protected party has died” (my emphasis).
The standard Transparency Order, which acts as the default template, makes provision for the prohibition on the publication of names, and other identifying information, of P and their family members. It also makes provision for the non-identification of “ANONYMISED PERSON WHOSE IDENTITY SHOULD NOT BE PUBLISHED (who the court has so identified to the parties in private”. This can include those providing care for P, including clinicians.
It is helpful to have confirmation from the Supreme Court that, as Celia Kitzinger noted, these restrictions should indeed be lifted.
I think that this judgment has implications beyond life-sustaining treatment cases (and beyond cases involving medical treatment and clinicians). The professionals in most Court of Protection cases are social workers, best interests assessors, professional deputies, NHS psychiatrists, psychologists, nurses, etc. It seems to me that the Supreme Court’s judgment may also be applicable to those professionals.
The judgment may also have some impact on the duration of Transparency Orders.
The standard, default, Transparency Order template offers three possible options for the durations of the order. It says:
Duration of the Injunction
(8) This Injunction shall have effect [ until further order of the Court ] [ the death of THE INITIALS CHOSEN TO IDENTIFY P ] [ X weeks / months after the death of THE INITIALS CHOSEN TO IDENTIFY P ].
The second and third options, that the injunction shall have effect until after the death of P, or X weeks/months after P’s death, align with the Supreme Court’s decision regarding a cooling-off period. However, in my experience it’s much more common to see Transparency Orders that have duration “until further order of the Court”.
This means that family members of protected parties in the Court of Protection have to apply to the court for a discharge of that Order so that they can speak freely[2]. This process is time-consuming (because the court doesn’t tend to treat the applications with any sense of urgency) and stressful. If a person doesn’t know how to make that application (which is via the filing of a COP 9), they may also need to hire a lawyer for advice. This can incur additional financial costs that may well be unsustainable, making freedom of expression contingent upon personal finances.
When the duration of an order is “until further order of the court”, an application to vary or discharge it still needs to be made even after the death of the protected party if the family want the freedom to speak about all aspects of that person’s life, including their role as a “P” in the Court of Protection (see Bureaucracy blots out the sun”: Telling Ella Lung’s story).
A main force of the standard Transparency Order is to prevent family members from revealing that a person is or was a P in the Court of Protection. This differs from what the Supreme Court judgment concerns, which is specifically about the naming of medical professionals. In fact, by the time High Court was considering these injunctions (in 2021), the families could publicly use the names of the child at the centre of each case: Zainab Abbasi and Isaiah Haastrup.
That being said, in my view this judgment from the Supreme Court makes the default position of Transparency Orders being made “until further order of the court” entirely untenable. A Transparency Order of this duration is one that indefinitely inhibits the free expression of those involved in Court of Protection cases.
It is not clear at all whether or on what basis that is “necessary in a democratic society”. In my view, it is not.
Daniel Clark is a member of the core team of the Open Justice Court of Protection Project. He is a PhD student in the Department of Politics & International Relations at the University of Sheffield. His research considers Iris Marion Young’s claim that older people are an oppressed social group. It is funded by WRoCAH. He is on LinkedIn, X @DanielClark132 and Bluesky @clarkdaniel.bsky.social.
Para 60 reads: “I have written this judgment to enable AW to have a brief record of court proceedings which were before the court for a year. During that time AW was deprived of her liberty first under the Inherent Jurisdiction relating to children (s.100Children Act 1989) and later in the Court of Protection wherein it was declared in the interim that she lacked capacity in the relevant domains. However, once the expert evidence had been finalised and tested before the court, it became apparent that in her case the evidence did not support the presumption of capacity being displaced. AW is an adult now with capacity, able to make good and bad choices about her own future. I wished her well on 22 May 2025 and I do so again as I end this judgment.”
An observer at the final hearing, who had been following the case closely, noticed that P and her parents were all shedding tears of joy at the conclusion. As Ms Justice Henke dismissed the proceedings, she told P “It’s been lovely to see you but I hope I never see you again” and wished her all the best for the future.
Original Blog:
I am an independent SEND advocate supporting families with issues related to Special Educational Needs and Disabilities across education, social care, and health sectors.
My journey began when my youngest child was identified as having SEND at the age of 2 (now 21). Since 2012, I have worked in a voluntary capacity supporting parents and serving as an active steering group member of my local parent carer forum. I have contributed to several service improvement projects, notably the redesign of the autism pathway into a neurodevelopmental pathway, which inspired me to pursue an MA in Autism Studies.
Prior to attending Court of Protection (CoP) hearings, my only court experience was at the First-tier Tribunal (Special Educational Needs and Disability). My first hearing was in 2015, where I attended as a parental supporter for a case involving a refusal to assess. The COVID pandemic transformed these proceedings, with hearings shifting online, enabling me to support parents throughout England rather than only those within geographical proximity. Since then, I have supported families at countless tribunal hearings.
Why I’m Interested in the Court of Protection
My interest in the Court of Protection (CoP) stems directly from my SEND advocacy work. As I observe CoP cases, I’m interested in whether the autistic adults in these proceedings have experienced the same early support barriers I currently witness in my advocacy work.
Many families I work with face repeated rejections from Child and Adolescent Mental Health Services (CAMHS) due to diagnostic overshadowing, where professionals dismiss concerns with “it’s just part of being autistic”. Similarly, families often struggle to secure appropriate support from local authorities and the education system.
This system operates largely reactively—children and young people typically need to fail first, face exclusions, or experience significant crises before adequate support is provided. My current understanding of systemic support gaps leads me to question whether these same barriers affected individuals now subject to Court of Protection proceedings.
My thinking on this is also informed by following George Julian and her work documenting the deaths of autistic people and people with learning disabilities, many of whom would have been subject to the Court of Protection proceedings through Deprivation of Liberty Safeguards (DoLS). The Learning from Lives and Deaths Review (LeDeR) programme reviews the deaths of people with learning disabilities and autistic people in England to improve health and social care services.
My research for MA Autism, titled “Parental advocacy as a ‘dangerous game’: An exploration of mother blame through subject access requests; accounts of advocacy from the mothers of autistic children” further informs my perspective on this issue.
In my experience supporting families, I’ve consistently observed that it is much harder to address issues once they’ve developed than to provide appropriate support from the beginning. Delaying intervention merely transfers responsibility and financial burden to another department or agency.
The CoP hearing I watched
The hearing (COP 14276063)was listed for 16th April 2025 at 10.30am, before Ms Justice Henke, and I asked to observe via Microsoft Teams. I submitted my observation request at 9:57 and received the link at 10:19. I never received the Transparency Order – but Celia Kitzinger (who also observed the hearing) did – and she said I was copied in, but when I checked, my email address had been wrongly typed, which is why I didn’t get it. Celia passed it on to me in the course of writing this blog post.
There was no previous published judgment, or blog post, to help me to understand in advance what this hearing was about. There wasn’t an opening summary, which also made it hard to follow, and the hearing itself only lasted for about 30minutes. So I gained the experience of logging in and watching lawyers and the judge in court – but not really any sense of what the hearing was about, except that the judge seemed very cross with someone for not producing a report on time. I liked this judge and her manner – I thought she was committed to getting things back on track for the young woman at the centre of the case (P).
The most important thing I got out of observing this hearing was a better understanding of the role of the Official Solicitor as litigation friend.
This was the fourth Court of Protection hearing I’ve observed. There’s a WhatsApp support group for observers and I’ve raised numerous questions (perhaps too many—apologies!) in the WhatsApp Group about things I’ve experienced so far. One such query was (reflecting on Luba MacPherson’s anger at being represented by the Official Solicitor), “I was wondering why having an official solicitor was bad compared to having the capacity to appoint someone?“. This led to a discussion on the WhatsApp Group about how if you instruct your own solicitor, then they argue for the position you want them to take in court, but if it’s decided that you lack capacity to instruct your lawyers, then you are usually represented by the Official Solicitor, who doesn’t necessarily argue the position that you want but takes a position that she thinks is in your “best interests”. This means that she can actually argue the opposite of what you want (e.g. for a feeding tube when you don’t want a feeding tube).
The critical distinction became clear: When appointing your own solicitor, you must be able to read, understand, and process legal information in order to provide proper instructions. In contrast, the Official Solicitor (who is appointed when you can’t do those things) acts according to what they determine to be in your best interests, rather than following your direct instructions.
This left me thinking that the Official Solicitor would not be on P’s side, so I was confused when I heard the barrister for P, Eleanor Keehan, who seemed very caring and focused on P. I thought she must be P’s own lawyer, and it wasn’t until after the hearing that it was explained to me that actually she was acting for P through the Official Solicitor.
The barrister acting for P on instruction from the Official Solicitor did not say very much in court, but what she did say was based on P’s best interests and took into account P’s wishes and feelings. Her two main points were:
She wanted practical supports to help P understand the proceedings, and a Communication Passport (which she said had not been updated since Children’s Services). The judge strongly supported this and asked for a summary of P’s communication needs to be in the notes on the end of her bed: “It doesn’t have to be War and Peace. It can be simple bullet points to make sure everyone communicates with P in a style she can understand”.
The Official Solicitor expressed concern about a medical treatment (a naso-gastric feeding tube) that might be given to P “in the face of P’s objections and without application to this court”. The judge said there would be a recital (a note) on the face of the order about the need to bring the case to court if treatment were being considered that P didn’t want to have.
So, I saw the Official Solicitor support P’s communication and P’s choices.
There was discussion in court about P’s physical health conditions. She was in hospital and (as the judge said) “clearly unwell”, and this was preventing her from being able to read and process the necessary legal documents. That’s why she was deemed to lack litigation capacity.
A difficulty in the hearing was that an independent psychiatric expert, Dr Christopher Ince, had written a report saying that P does have capacity to conduct legal proceedings. This contradicts what the lawyer for P (on behalf of her litigation friend the Official Solicitor), Eleanor Keehan, was saying – that P would “struggle” to read the reports and instruct her directly. This seems to have arisen because Dr Ince has not provided an updated report since P has been in hospital. It seems that usually P would have capacity to instruct a lawyer, but because of her current health situation she doesn’t at the moment. Her mother was in court and said: “All I can think about is P’s physical health… She doesn’t have capacity to understand and retain as she normally would – she can’t concentrate, she can barely string a sentence together”. The judge, who seemed to know P quite well, said “she’s deteriorated, that’s obvious”. But without an updated report from the expert witness, it’s awkward for the judge to make a declaration that P lacks capacity to litigate.
The key message of this blog is simple. Don’t let knowledge gaps deter you from observing CoP hearings. Attending real proceedings brings theory to life and makes complex concepts clearer through practical context. The insights you’ll gain from direct observation are invaluable, even if you’re unfamiliar with the proceedings at first. After all, open justice should promote observation from all walks of life and not be dependent on specific background knowledge. My message to everyone is: Just do it!
Postscript from Celia Kitzinger: A penal notice against Dr Ince
We’re happy to provide support for people who are unsure or anxious about attending proceedings – just get in touch. As Michelle says, watching a court hearing can be confusing at first, and there’s likely to be a lot you don’t understand. But everyone has to start somewhere, and it’s a real learning opportunity!
I watched this hearing alongside Michelle: we were in WhatsApp contact throughout and had a video-call discussion about it afterwards. I’ve watched more than 600 hearings and I still almost always learn something new at a hearing. This is the first hearing I’ve watched where a judge has imposed a penal notice on an expert witness. Dr Ince was asked to submit a report, asked for extra time and (I understand) submitted the report in advance of the hearing. He had also been asked to provide an addendum report. It’s several months overdue and the judge sounded concerned and frustrated about this. “Dr Ince has been extraordinarily tardy in the provision of this report, missing numerous deadlines”, she said, “and so we’ve been playing catch-up”. The judge set a new deadline for Dr Ince’s addendum report and announced that her order to deliver it by that deadline “will be backed by a penal notice” (i.e. a note saying that that if it’s not delivered on time he can receive a prison sentence).
There was also some discussion about the date of the next hearing and the need for Dr Ince to attend it. Counsel confirmed that Dr Ince had already been asked about his availability and was able to attend on the date when the next hearing was to be scheduled. Nonetheless, the judge said that, if necessary, she would issue a “witness summons” (i.e. an order to attend which means Dr Ince could be arrested and taken by the police to court if he does not attend). “I’m not joking”, said the judge. “What has happened with Dr Ince in this case is truly unconscionable. The idea that I am going to set the timeline of this case by reference to Dr Ince’s availability is to fail to understand the gravity of the situation he is in. He will be directed to attend, and that too will be backed by a penal notice”.
The next hearing is listed for 22nd and 23rd May 2025.
Michelle Hughes is an independent SEND Advocate interested in the link between access to services and outcomes.
Celia Kitzinger is co-director of the Open Justice Court of Protection Project. She has observed more than 600 hearings since May 2020 and written more than 100 blog posts.She is on LinkedIn (here), and also on X (@KitzingerCelia) and Bluesky @kitzingercelia.bsky.social)
Editorial note:We commissioned this blog post due to the interest in statutory wills generated by the case of W v P [2025] EWCOP 11(T3) which was heard in private. The blog author acted for the P in that case, instructed by the Official Solicitor. We have also subsequently published a blog post about a public hearing relating to a statutory will (“Judge approves statutory will in contested hearing”). This post by Ruth Hughes KC sets out the legal framework for statutory wills.
Where an adult P lacks mental capacity to make a will the Court has jurisdiction to authorise the execution of a will on P’s behalf: see section 18(1)(i) of the Mental Capacity Act 2005 (“MCA”). The Court will authorise a will if to do so would be in P’s best interests in accordance with section 4 MCA.
Best interests in the context of testamentary and lifetime giving were discussed in three important cases following the coming into force of the MCA: (i) Re P[2010] Ch 33 [2009] EWHC 163 (Ch), a decision of Lewison J (as he then was) concerning the using of a will to change the terms of a pre-existing trust; (ii) Re M [2011] 1 WLR 344 [2009] EWHC 2525 (Fam) – a case where P had been the subject of undue influence by a bad Samaritan neighbour, a decision of Munby J; and (iii) Re G(TJ) [2010] COPLR Con Vol 403 [2010] EWHC 3005, a decision of Morgan J. The latter case in fact actually concerned the authorisation of gifts to be made by P rather than a statutory will.
3. From these three early cases the following principles are established:
P’s best interests extend to after his death: Re P at [44];
P has an interest in being remembered for having “done the right thing” by his will: see Re P at [44]. However, circumstances of dispute among those close to P can make this concept tricky to apply: see Re G(TJ) [53]. Nevertheless, it can be more helpful when there is unity in the family.
It can be in P’s best interests to act altruistically: see Re G(TJ) [56];
The weight to be given to the factors relevant to each person’s best interests is case-specific. There is no hierarchy of factors, although P’s wishes and feelings will always be significant and a factor to which the Court will pay close regard: see Re M [32] and [35].
In some cases, there will be a factor of “magnetic importance”: see Re M [32].
Although best interests is not a test of substituted judgement, (i.e. what P would have done if he or she had a lucid interval of capacity, which had been the test for a statutory will before the MCA: see Re D(J) [1982] 2 All ER 37), substituted judgement remains an element of the test: see Re G(TJ) [55].
4. As is plain from Morgan J’s judgment in Re G(TJ) the concept of doing the right thing can sometimes be tricky for the Court:
In Re Meek [2014] EWCOP 1 (a case in which the author acted for P, via her litigation friend the Official Solicitor) HHJ Hodge suggested with reference to the decision of Baroness Hale in Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67 that “the right thing” was to be judged by reference to the standards of P herself.
In Re J(C) [2012] WTLR 121; [2012] MHLO 35 Senior Judge Lush had difficulty with the concept of being remembered with affection or doing the right thing in that particular case. He said at [54]
“JC has an appalling track record. He has spent his entire lifetime doing precisely “the wrong thing” in his relationship with others, and his malevolence is such that he would probably relish the prospect of thwarting his children’s designs on his estate and would rejoice in being remembered by them with disaffection. In any event, it would be unrealistic to expect him to undergo some sort of Damascus Road experience simply because he lacks capacity.”
5. A helpful summary of the case law can be found in District Judge Eldergill’s decision in Re Jones [2016] WTLR 661 [2014] EWCOP 59 from [59]. This case concerned a P who was intestate and had a history of extreme tax avoidance. He had an estate of nearly £2.5m (in 2014). P had a wife (of 40 years’ standing) and a child from a previous relationship. The daughter was adult and suffered from drug problems and was not financially secure. The task of the Court was to decide whether to make a will in P’s best interests (or whether to leave the intestacy in place) and, if so, what form the statutory will should take. The author represented P by his litigation friend the Official Solicitor, who almost invariably acts as litigation friend in statutory will cases.
The Court did take into account that both the wife and P’s daughter would have standing to bring a claim after P’s death against his estate under the Inheritance (Provision for Family and Dependants) Act 1975 if reasonable financial provision had not been made for them on P’s death. NB it can be in P’s best interests to avoid post-death litigation: see Re D [2010] EWHC 2159 (Ch).
As for doing the right thing, this was an appropriate criterion for “most but not all people”: see [61].
“The onset of mental incapacity is not an opportunity for moral correction.”: see [67].
Nevertheless that still left room for the court to authorise a “[67] statutory will which makes good the omissions of P but does not seek to correct their considered acts and decisions. For various reasons all of us never quite get round to doing many of the things we know we ought to do. Making a will may be one of them. Most people would wish to make a Will if they knew both that they were going to be incapacitated by a stroke tomorrow and the consequences of dying intestate or leaving a defective Will. They would seek to avoid the sometimes arbitrary nature of intestacy, the consequences of dying intestate on those dear to them, the resulting inconvenience and worry for their family, the possibility of family discord and avoidable litigation arising from a failure to make clear their intentions. [68] Thus, in the absence of clear evidence to the contrary, one is entitled to assume that had P given proper thought to their pending incapacity and intestacy he or she would have wanted to put their house in order and make a Will. They would want to do the right thing and not to leave family members with such unintended consequences and problems.”
6. Ultimately, District Judge Eldergill held that it was in P’s best interests for £625,000 of provision to be made for the daughter in the form of a lifetime gift (which was settled on trust to protect the daughter) and a legacy with the rest going to P’s wife.
7. In my experience statutory will proceedings are brought in order to:
deal with an intestacy which is not in P’s best interests;
deal with a substantial change of circumstances since P made a will;
prevent litigation after P’s death, particularly claims under the Inheritance (Provision for Family and Dependants) Act 1975 or that P’s will is invalid or defective in some way.
8. It is rare for there to be a dispute as to the law to be applied in relation to a final statutory will application.
9. Statutory wills can become urgent if P is dying and it is possible to obtain an interim statutory will (often called a holding will) under section 48 MCA. Such a will is final if P dies with it in place. The order authorising execution of a will is not sufficient: a will must actually be executed by the person authorised on P’s behalf prior to P’s death. The form of execution is prescribed. The Court will then seal the will. Sealing can happen after death but must occur before an application for a grant of probate is made.
10. The Court will make a will only for Ps who are habitually resident in England and Wales or have property here (in relation to that property only). It will not make a will in respect of immoveable property outside England and Wales: see para 4(4)(a)(i) of Sch 2 to MCA.
11. The Court has been willing to authorise settlements (i.e. trusts) of property for children under section 18(1)(h) MCA which have essentially testamentary effect to avoid an undesirable intestacy which is not in P’s best interests: see for example Re CJF [2019] COPLR 262 [2019] EWCOP 1 in which provision was made for effectively a foster family who had shown extraordinary kindness to P. The author acted for P (via his litigation friend the Official Solicitor) in that case also.
12. As with all property and affairs cases, the usual rule on costs is that P bears the (assessed) costs of an application.
Ruth Hughes KC is a barrister at 5 Stone Buildings. She has in-depth experience in all matters concerning property and affairs in the Court of Protection, including foreign issues and is also comfortable advising in relation to associated welfare issues. She is frequently instructed by the Official Solicitor.
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