When P’s best interests aren’t in a Council’s financial interests

by Daniel Clark, 21st April 2024

The court has previously found that it is in the best interests of Mr B to remain in his current care home. However, unless he obtains Continuing Healthcare funding, he will have to move because the local authority aren’t able to meet the high cost of the care home. To add insult to injury, the Transparency Order prohibits me from identifying which local authority is involved in this case. 

This case (COP 13978955) was back in court on Wednesday 13th March 2024. It was heard before District Judge Parker, who was sitting remotely (via MS Teams) at Birmingham Family Court. Varsha Jagadesham, of No5 Barristers Chambers, represented Mr B via his litigation friend, the Official Solicitor. Unfortunately, I can’t tell you who represented the respondent local authority because she is employed by that local authority.

I will first explain the issues with the Transparency Order, and then detail what happened during this hearing. 

Transparency matters? 

I received the link for this hearing very late. The case was listed to start at 12noon but another observer and I didn’t receive the link until 12:15. When we joined the link, the judge seemed confused by our absence and I think it’s fair to say that this was an administrative issue rather than a conscious attempt to exclude us.

We hadn’t received the Transparency Order but the judge explained that it was in the usual terms. I took that to mean that it prohibits the publication of information that identifies, or is likely to identify, P or where he lives, or any of his family. 

However, when I requested the Official Solicitor’s position statement I also asked for a copy of the Transparency Order. This was simply so I could provide Celia Kitzinger, our blog editor, with a copy: after all, she is also bound by the Injunction but can’t comply with its terms if she doesn’t see it. 

I was surprised to see, in the section that details the Information covered by the Injunction, that I cannot publish “any material or information that identifies or is likely to identify that […] A Local Authority is a party to these proceedings”. This also means that I can’t identify the ICB because to identify the ICB would mean someone could reasonably identify the local authority. The ICB are no longer a party but are nevertheless very involved in this case. 

These are not the usual terms of a Transparency Order. A Transparency Order should protect P’s identity and it is very rare indeed for the identification of a local authority to make it possible to identify P. I was confident, having had the benefit of already attending the hearing and reading the Official Solicitor’s statement, that risk was so small as to be almost non-existent. 

I therefore wrote an email to the judge asking for the Transparency Order to be varied. I believe that the name of the public bodies are of legitimate public interest for two reasons. First, as I will explain, its finances are of real importance in this case. Second, public bodies are funded by our taxes, and the public have a right to know how that money is being spent (or not spent). 

The judge responded reasonably quickly, asking the parties to seek instructions. He explained that, if there was no objection, the Order would be amended. If an objection was received, submissions would need to be made and the matter dealt with at the next hearing.

Unfortunately, I have heard nothing since. I have delayed writing this blog in the hope that an amended Transparency Order would find its way into my inbox. It has not but, with the next hearing only a couple of weeks away, I have made the decision that this blog should be published without the identity of the local authority and ICB.  I will update it (assuming I am allowed to do so) with the names of the public bodies when I hear back from the judge.

Improving Mr B’s quality of life 

Mr B has a diagnosis of a progressive neurological disorder which is the cause of his lacking capacity to make his own decisions about where he lives and receives care.  He has challenged his deprivation of liberty (at a care home) under s21a of the Mental Capacity Act 2005. At a hearing in December 2023, which we have not observed, the court found that it was in Mr B’s best interests to stay at his current home due to risks associated with falls and choking. 

In the words of the judge at the start of this hearing, “this decision didn’t go down too well”. The Official Solicitor’s position statement explains this in more detail. Mr B was very upset with the decision, and had (out of character) been verbally and physically aggressive towards carers. He has reported being low in mood, is communicating needs rather than having a conversation, and hasn’t engaged in any group activities (which he previously did). 

Part of the focus of this hearing was to look at what could be done to improve Mr B’s current situation.  The judge was clear that Mr B simply cannot be coerced to be out and about; “he needs to get back into the pilot seat”. 

Given his love of football and the cinema, there will be further assessments on how visits to both of these can be accommodated, as well as how he could visit family. The judge also mentioned that he understands that Mr B’s Netflix subscription has lapsed, and he wondered whether that could be sorted too. This will mean Mr B can watch his favourite film series. 

Overall, I was very impressed with how familiar the judge was with Mr B’s likes and interests. Clearly, he wanted to ensure that Mr B’s quality of life could be improved as much as possible, and took an active role during the hearing to ensure that nothing was missed. 

Finances 

Mr B’s stay at his placement was being funded by an ICB, which had been a party to proceedings. However, following a Continuing Healthcare funding review, he was assessed as being no longer eligible for this. 

While his sisters are appealing the funding decision, the team in charge of the review are very busy and it will take some time. To offset these delays, the social worker has submitted a new CHC checklist (by which claims are assessed) but this could also take some time. 

The local authority is funding the care home but, because of its high costs, they are not willing to do this indefinitely. They may withdraw their funding before any appeal or new assessment is complete. Another potential care home has been identified but this is less than desirable. The judge put the situation like this:  “I appreciate the local authority are trying to continue the funding but they cannot continue it ad infinitum. Suffice to say, in December I made a best interests decision on the basis that Mr B remains in his current home. It would add insult to serious injury if, having made that decision, he then is moved away from a place where he has been for a significant period of time, which is local to his family, which the other home isn’t…There’s a tipping point [for people, especially given] all the adversity and difficulties he’s coming to terms with. That’s really worrying.”

This is a truly intolerable situation. It is not the fault of individual actors, all of whom are focussed on Mr B’s best interests. It does, however, speak to the financial management of a certain Council. It also speaks to the decision-making processes of a certain ICB: how can somebody with a progressive disorder be assessed as eligible for CHC funding only for this decision to be revoked? 

There’s an awful lot to be said here. This case raises questions about the conflict between P’s best interests and a local authority’s financial interests. It also raises questions that I can’t actually ask in this blog because to ask them would probably lead to someone being able to identify the local authority. 

Hopefully, by the time of the next blog, the Transparency Order will have been varied so that this case can be reported fully. 

This case will return to court on Friday 10th May 2024. 

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 tweets @DanielClark132

A contested capacity hearing

By Nell Robson and Claire Martin, 19 April 2024

We observed a hearing (COP 14181752) in Derby before District Judge Lubega on the 12th April 2024. It was listed like this on CourtServe: 

My (Nell’s) interest in this hearing was piqued because I am a sixth form student currently completing an EPQ (Extended Project Qualification) about capacity and best interests for pregnant and birthing women. So, I have been looking out for cases where capacity is an issue (and finding cases that specifically relate to pregnancy and birth decisions is hard because the listings often do not say what they are about in that amount of detail). 

We were really pleased to be sent the link – and the Transparency Order – for this hearing in plenty of time and the court staff joined us early to check that we could hear and see. Thank you! 

The Context (Claire) 

The application was from Sheffield City Council and the respondent is P’s father and 1.2 Rule Representative. 

We learned (in a very helpful summary, invited by DJ Lubega, from Navpreeth Gihair, counsel for the Local Authority) that P is a 19 year-old woman who has diagnoses of autism and pathological demand avoidance disorder (PDA). She has been living in a care home (which she chose from options available) since December 2022 and is said to be happy there. Counsel for the Local Authority said that P has ‘chosen to be mute since February 2020’. We didn’t learn the context for this situation or how P currently communicates her wishes and feelings. 

The issues for this hearing were:

  • The authorisation of current restrictions for P on the internet and computer games – it was reported that P will ‘self-neglect and will prioritise gaming over everything’. So, at the moment, the internet is turned off overnight so that gaming is prevented, as well as at specific times through the day to enable certain activities, such as eating. 
  • P’s capacity for deciding where she lives – and although this is not a current issue (P is happy where she is, as is her father), there is a dispute between the Local Authority and P’s father about her capacity to make this decision. 
  • Who is authorised to take P out of her home. 

Not much was discussed in relation to the restrictions currently in place – we think that the judge agreed to the draft court order to continue with those restrictions in the care plan (Judge: “I am content with the care plan”). 

In relation to the other two issues, P’s father said: 

“[P’s] regime currently is appropriate – better than for years, she has a good routine. The care provider needs to be CQC registered: that’s down to them. The only issue really is [P] needs to be able to decide where to live, but that’s not something on the table so [….] As far as free to leave goes, she wouldn’t go anywhere on her own anyway. Where she lives, there’s no parks etc., she always needs somebody to support her [talked about needing a car to get anywhere at all]. The issue here is, they were stipulating a group of people who weren’t able to help her, and excluding a group of people who were able to help.”

It seemed that only the current care home staff were allowed to take P out, but P does not have as good a relationship with them as with staff from another care agency or with her father (and other family members), who – we think – are the ‘excluded’ group of people that P’s father refers to. She won’t go out with the ‘stipulated’ group of people, meaning, in other words, that she doesn’t get to go out. 

It was agreed that a recital in the court order would ensure the current restrictions are changed such that “[P] would need to be accompanied by someone appropriate to look after her” (judge). 

The final issue before the court was whether or not P has the capacity to decide where she lives. In September 2022, P’s social worker assessed her as lacking capacity for this decision. P’s father disagrees with this but is concerned that pursuing an up-to-date capacity assessment might be distressing for her – given that where she lives is not a live issue at present. He said “She is forming relationships with the psychiatrist and I wouldn’t want to see that go backwards”. 

Counsel for the Local Authority said, in relation to outstanding issues for the court: 

“The only factor is regarding whether she has capacity or not. That was raised by [P’s father]. He is still saying to court that P can make these decisions, and the Local Authority is saying the contrary. These proceedings are to approve the deprivation of liberty. It’s whether there is an active challenge to the capacity evidence. That is of concern. If he is saying ‘she can make these decisions for herself’, then the entire court procedure is predicated on fact that she lacks capacity. So, I would be hesitant to end proceedings today if [P’s father] is saying that she has capacity.”

The judge confirmed “I don’t think I had in mind a final order today” and proceeded to think about whether and how P’s capacity might best be determined, including appointing an ALR (Accredited Legal Representative) and commissioning a Section 49 report.

Different Views on Capacity (Nell)

Since this was the first time I have ever observed a hearing, and didn’t know what to expect, or know anything about the case, it was extremely useful that counsel gave a summary of the case at the start of the hearing (as I’m told was recommended by the former Vice President).  It allowed me to think about the matters at hand during the hearing rather than being concerned with trying to work out the facts of the case. If that had not been provided I can imagine I would have found it much harder to understand what was happening and what was being decided in the hearing. I could focus on the proceedings to help me to see how capacity is approached.

The current support network surrounding P is based on the findings that she lacks capacity for a multitude of things, however this was (partly) disputed by P’s father. This highlighted how a perceived lack of capacity should not be assumed – different people have differing opinions on whether P has capacity. And even though a social worker had assessed P to lack capacity to decide where to live, this is not set in stone and challenges can be made to such decisions. I learned that a section 49 report may be requested from people caring for P, to help the court understand and decide P’s capacity for certain decisions. In this blog it explains:

“A common scenario when a section 49 report might be considered is when P’s capacity is in question. In such a case, the parties might seek an order requiring the NHS Trust to arrange for a  consultant psychiatrist to assess P’s capacity and produce a report. Depending on the particular circumstances, the appointed clinician might also be asked to consider additional, specific areas of capacity and to make recommendations regarding the management of P’s condition and best interests more generally.”

In the hearing it was also interesting to see the court balancing the potential need for a renewed capacity assessment, whilst also considering how undertaking the assessment might destabilise P. The father highlighted his worry that undertaking a new capacity assessment could cause P to backtrack in the progress she has made. He also showed a nuanced understanding of capacity in stating how P may not have capacity to sign a tenancy agreement but does have the capacity to decide where she should live: 

Father: The only other thing is being entitled to decide where to live. In my opinion, she’s the only person who’s made sensible decisions about where to live. Including where she lives now. Whether she should be signing a tenancy agreement is another thing, we have no grounds to prove [talked about P not making poor decisions in the past and knowing where she likes to live]

I thought this was an important point: he uses past evidence of good decision making to suggest that this demonstrates capacity for future decision making in the same domain. This is an important aspect of looking at capacity: just because someone lacks the capacity for one decision it does not automatically mean they lose capacity for other decisions. 

Concerning the development and completion of my EPQ, it was useful to see how capacity was considered in a hearing where opinions differed about whether or not P had capacity. I can imagine opinions often differ around whether someone has capacity or not and it is important that if a person is assessed as lacking capacity for a decision, the judgment that they lack that capacity must be certain and based on clear evidence. If the evidence was not ascertained correctly, then that opens the potential for the right to autonomous decision-making being taken from a capacitous person. I think that would be a dreadful situation. 

In regard to medical decisions, it can mean the difference between whether someone can choose their own medical care or not. In my EPQ this is whether a woman is able to autonomously able to refuse medical interventions such as a caesarean section, or if it can be decided that she must endure one against her wishes as she has been assessed to lack mental capacity to make that decision. Assessments of capacity, by others, control whether people are able to make autonomous decisions or not, which restricts their freedom and control of their own life. It really highlighted to me the importance of making the correct judgement and what a difficult job judges must have.

The Outcome (Claire and Nell)

DJ Lubega agreed the final wording for the court orders, which included the appointment of an ALR and the importance of stating that anyone ‘appropriate’ to accompany P outside of her home was permitted. The judge was clear that, although P was not currently stating she wished to move out of her current home, the existing court authorised restrictions that she is subject to, do amount to a deprivation of liberty, and would continue to amount to a deprivation of liberty even with a wider pool of people taking P out. Addressing P’s father the judge said: 

“If you’re saying she has capacity to make the decision for herself, if she turned around next week to say I want to live somewhere else, then this needs to be bottomed out. It needs to be done in a lawful way and needs further consideration from the court. My question is [….] given the concerns both parties have expressed about the impact on P, what process should take effect. Is the entire process needed? Can it be streamlined?”

Counsel for the Local Authority confirmed: “There is scope for it to streamlined. It may be that when the ALR is involved, there is a different way. The work with P by the psychologist will continue in any event. We are all alert to concerns about further distress and need to build a relationship carefully. Simply, that if we need further capacity evidence … the psychologist has said that if we need one then it needs to be done very carefully. We need to understand how that can be better approached in her best interests. We don’t know how at this stage.”

We didn’t learn very much at all about P as a person in this hearing – there have been several hearings in the case, so this is perhaps not surprising. We wondered why P had not spoken since 2020 and how she communicated her wishes and feelings – and it sounded like she was able to do so. P’s father, as well as P herself, seemed to be very happy with the care she receives where she is living now, and all parties were concerned about disrupting her relationships and stability by subjecting her to a capacity assessment; an assessment that is needed for the Court of Protection to have jurisdiction in relation to decision making about where P lives, both now and in future. 

Given that P is not expressing any desire to leave her current home, and everyone was worried about the psychological impact of more assessments, we were unsure why proceedings could not be brought to a close without a determination about capacity for that decision. Then, if and when P did express a wish to move home, a capacity assessment could be carried out at that time. 

A ”short, final hearing” (judge) is planned for 27th June 2024. 

Nell Robson is a sixth-form student completing an Extended Personal Qualification entitled: “What are the challenges in making best interests decisions for pregnant/birthing women?”

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 tweets @DocCMartin

“A most distinguished man” 

By Claire Martin, 15th April 2024

A hearing before HHJ Beckley on 18th March 2024 (COP 1347207T) started off with counsel for P (Alison Harvey) describing the person at the centre of the case as “a most distinguished man’”. He is used to living in Kensington & Chelsea and wants to go back there to live. 

I am able to name the Royal Borough of Kensington & Chelsea (RKBC) because – although the Transparency Order (TO) that observers are served originally stated that RBKC could not be named – I emailed the judge before the hearing started and asked him to consider changing (‘varying’) the injunction. 

At the start of the hearing, HHJ Beckley said that this issue had been “helpfully raised” and that “… the TO unusually, and in my view erroneously, says RBKC shouldn’t be identified. There’s no reason that RBKC shouldn’t be identified. That will be taken out of the order“.

We have found that (as this case illustrates) it is much easier to vary a Transparency Order before or during a hearing than afterwards. So, it really helps to be sent the TO prior to a hearing. 

The Hearing

P (I am not sure how old he is) was a professional man in the STEM sector. He has lived where he currently resides since 2020.

From 2010 he is said to have experienced depression and alcoholism and then in 2013 he had a brain injury that has affected his short-term memory and has left him with seizures, which have led to further injuries. Up until some time in the mid-late 2010s he lived with his mother, but she moved out because she felt unsafe. Then he was evicted from the family property and had a further seizure in 2018 which eventually led to him living where he lives now. 

P is the applicant in this case, via his ALR (who kindly shared their Position Statement so that I could better understand the current situation). The application was to challenge the authorisation of P’s deprivation of liberty at the place where he currently lives. The respondent is the Royal Borough of Kensington & Chelsea. Two family members, his niece and his sister, were also (remotely) at the hearing, but they are not (yet) parties in the case. 

P really does not want to be living where he is now. He has consistently stated this. Counsel for P said that “proceedings have been DOGGED by delay. By the last hearing we reached a state of considerable vexation from his ALR” (her emphasis). The proceedings have been ongoing since March 2022 and “we have no tangible progress to show for it for [P] in terms of getting back to the area where he wants to live”. 

P had been assessed by various care homes, and had repeatedly been turned down for a place to live. However, on the morning of the hearing, a company (which had previously declined to offer a place) had come forward with a place for P. 

This was presented as an opportunity for P. He hadn’t yet seen it though, and had “turned his nose up” at it, being in a ‘less smart area of Kensington and Chelsea’. His counsel said “we hope that when he visits it he will feel more positive about it”. 

However, it transpired that P’s family was somewhat concerned about the proposed move. The court was told that “they are involved at every step. Ultimately they are consulted and involved rather than having power to force the court to complete options“. Alison Harvey, Counsel for P, proposed a plan: “… an initial transition meeting, an opportunity for the family to see [the care home] so they can take a view, and then a transition plan which would include provision for [P] to visit the placement. Advice would be sought as to how to present that to him, make it as positive as possible. See if we can reach agreement on a transition plan. We are dependent on [P] wanting to go. That remains a question for all of us.”

Other options would be considered in parallel, in case it didn’t work out. The relief in P’s counsel’s voice was palpable when she said “having been through a very rocky period we have achieved for the first time a concrete option to explore within Kensington & Chelsea, and that’s very exciting for everybody“.

Counsel for RBKC (Catherine Rowlands) and P’s family seemed less excited about the developments. 

Catherine Rowlands said, “Your Honour, the proposal that [P] should go to [the care home] is not set in stone. He has at the moment said that he’s not even willing to look at it“.

RBKC would place P on the waiting list for a council property (which would require a care agency for independent living) and the social worker was to do that. This was a “fallback” (said the judge) and “this isn’t going to magic a property rapidly“.

The judge then addressed P’s family. P’s sister spoke first. She said  that she was concerned about P moving out of the place where he is now because of a potential reduction in support. She mentioned that he currently receives psychological support from a psychotherapist and that he has epileptic fits and is concerned about whether he will receive 24/7 support. A further concern is access to alcohol and potential trouble with the police. 

P’s niece (who is a doctor) expressed pleasure that progress had been made, though she had reservations. She was concerned that the place being proposed now had, only the previous week, said that their care home was not appropriate for P, “so we’ve done a 180“. She also said that, despite being told that they would receive communications about the case, the family received everything “last minute” and that she felt this was “being pushed through … it feels like due diligence isn’t being done”. She outlined significant care concerns: “The website [of the proposed care home] mentions offenders and ex-offenders. My uncle is very vulnerable. With my healthcare hat on … he needs a consultant neurologist like he has in [current residence]. Who’s going to do that? Timing is my big concern – the neuropsychologist has concerns about [GP and hospital appointments].”

Counsel for RBKC and (I think) P’s social worker, who was also at the hearing, both tried to reassure the family that “transition planning is going to be thorough“.

The judge, similarly, stated: “Again, just to set [sister and niece’s] minds at rest. It’s not proposed that [P] will move before the next hearing. This is a best interests decision. […] [It has been] absolutely clear throughout the proceedings with [P] … he wants to be in RBKC. I do take into that view, his family’s views.”

So, that was the plan. P was to be encouraged and supported to go to look at the new proposed place to live, P’s social worker was to be authorised to make an application for social housing in RBKC as a ‘fallback’ and the family was to be involved in considerations. 

At the end, P’s niece spoke up:  “One request I would have, in front of everybody, if documents are being submitted please can we have them in plenty of time? The cynic in me says: do we get them late so we can’t have a voice? You will hear my voice! I ask court that everyone sticks to time and we have two weeks”.

She explained that time is needed to translate and discuss the proposals with P’s mother, whose first language is not English. The judge engaged with this request, suggesting that the Local Authority’s evidence should be received a month before the hearing. 

Reflections

This case had clearly been long and arduous for all concerned. It was clear that there is not a preponderance of specialist places to live for P, that can meet his needs and that are in his preferred area to live. Finding the balance between those two things has clearly been challenging. 

There was dispute between P’s counsel/ALR and the Local Authority about who should be doing what and paying for it. For example, at one point, searching for potential properties to buy was raised as an option, but counsel for the Local Authority was clear that “It is not the case where we intend to go and look for somewhere in the property market. It is not the job of RKBC”. Who should make the application for social housing was a further issue. Counsel for P was firm:  “May I say … the legal aid agency wouldn’t fund [ALR] to fill out any of those forms. There’s no way they’d pay him“. The judge confirmed that this was authorised to be the Social Worker’s role. 

This case seems beset with issues, not only by finding an appropriate place for P to live, but also with budgets and who will do what, when. This is the way of things, I understand. I know from my own experience that it is the same in the NHS. People get lost in the melee though – and, even when professionals try their best, delays inevitably happen. Such has been the impact on P’s life here, it seems. 

I thought some of the language used was interesting. P was presented as “a very distinguished man”, which made my ears prick up. I am reminded of medical letters that often start off “I had the pleasure of meeting this delightful lady….’” or some such accolade. What about people who are not “distinguished” or “delightful”? Are those adjectives relevant? Maybe they are. We were told that, although where P was living was a specialist placement and it has rehabilitated him: “…. it is not where he wants to be. He identifies very strongly with Kensington & Chelsea. The borough is central to his identity, as a resident of Kensington & Chelsea, and as a very smart man of a very smart suburb“.

Perhaps that is the case. Maybe I am being a bit picky here. I wondered why that way of describing him was chosen, rather than, say, that P previously lived in Kensington & Chelsea and this is where he feels at home and would prefer to live. P was also very keen to be registered with his previous GP, with whom it seemed he had a good relationship. This was presented as follows:  “If he is in the borough, the surgery which he is very fixated on is more likely to accept him as a patient.” It made me wonder whether the rest of us, when thinking about things that matter to us and that we can autonomously pursue, would consider ourselves to be “fixated” on those things? 

These are just little words, here and there. I think, though, that they might be more readily applied to others, rather than how we would choose to describe ourselves, when we speak for ourselves. 

The next hearing for this case is planned for Wednesday 5th June at 10.30am. 

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 tweets @DocCMartin

Extraordinary restrictions – “family are the experts”

By Celia Kitzinger, 14th April 2024

In an earlier blog post (“Unusual restrictions” for a 17-year-old), Claire Martin reported feeling “very alarmed” by restrictions to which this young man is subject, in self-contained padded rooms, behind a locked door, with 4:1 supervision.  The judge in that hearing, DJ Glassbrook, had said these were “extraordinary restrictions which require extraordinary justification”.  He gave only interim authorisation of the restrictions which is what has led to this next hearing just two months later, before a more senior (Tier 2) judge, HHJ Rowland, sitting in Birmingham. 

The young man at the centre of this case  (COP 14169995) has “autism spectrum disorder”, “bipolar disorder” and “severe learning disability”.  He moved to his current placement in November 2023, having previously been detained in hospital under s.3 of the Mental Health Act since 2016 (so for 7 years).   The extreme restrictions are said to be necessary because “his condition leads him to be a significant danger to himself and others”.  He will shortly turn 18 and the application before the court is to consider his best interests in relation to residence and care and in particular to consider whether the unusual restrictions applied are necessary and proportionate deprivations of his liberty.  

The applicant local authority, Buckinghamshire Council, was represented by Francis Hoar of Field Court Chambers.  

The young man, W, was represented via his litigation friend, the Official Solicitor, by Gemma Daly of Doughty Street Chambers.

His grandmother appeared as a litigant in person (also representing the united view of his mother and sister) having been joined as a party at the last hearing. Her contribution to the hearing was very significant.  She disagreed with the Official Solicitor’s perspective, explained the family view succinctly and clearly, and the judge seemed entirely persuaded.  “Thank you”, he said, “it’s the family who are the experts”.  

Here’s what happened.

Most of the hearing was spent going through the draft order, which I didn’t have a copy of so it wasn’t particularly easy to follow exactly what restrictions the judge was being asked to approve.  I heard that the bedroom and living area are padded and both doors – one to the garden and one to the staff office and kitchen area – are locked.  He’s not free to leave the placement without support from staff. The garden is fenced and there was mention of his trying to scale it in the past, which is why he needs supervision in that area. I gather that physical restraint is also used.

There was some discussion of something that sounded like “ProAct Skip” and when I googled it after the hearing I discovered PROACT-SCIPr Methodology which is a Positive Behaviour Support practice.  Staff encourage a “Positive Range of Options to Avoid Crisis” (e.g. a choice of bath or shower; a choice of what to eat; a choice of TV channels) while attempting to reduce restrictive practices (e.g. he was previously supervised while sleeping at all times and is now only checked every 15 minutes).  The methodology also uses Therapies (e.g. sleep therapy has been identified as a need for this largely nocturnal young man). 

The Official Solicitor then raised her particular concerns which related to the use of “seclusion”.  Although she’d not put in a formal application, she raised the likely need in future for a jointly instructed independent expert to address this, and other aspects of the restrictions.

“One of the consequences of W’s condition is that he will often charge – he’s a strong young man – he will charge at staff, and because of his strength that can obviously present a risk to himself and to his staff.  So, if he runs or charges at staff, they leave the padded area and retreat behind a locked door and monitor W via an observation panel.  The Official Solicitor suggested, and it is agreed, that detailed records must be kept of any such incident of seclusion and staff must unlock the door when he’s no longer charging.  We have asked for a narrative description of incidents when W is left alone in the padded area in response to incidents that challenge. […]. There is very limited information currently as to the frequency and duration of these seclusive episodes. On the balance of the evidence, the Official Solicitor cannot submit that this practice is necessary and proportionate.  We cannot agree that the court should authorise seclusion at present – or what would be “seclusion” if in a Mental Health Act setting[1].  This is a highly restrictive practice.  We cannot agree that it is appropriate and should be authorised by the court.  And it is not in the care plan that detailed records must be kept – so if the court is not with me on this, then that must be added.  There is no formal application for an independent expert before the court, but my instructing solicitors have inquired of three different Independent Social Workers in the last two days since the seclusion issue became apparent. This case is very likely to require expert evidence”.

The grandmother was then asked if she had anything she wanted to say.

Grandmother:  I may not understand 100% everything that’s been said because this is all very new to us as a family, but I do have some concerns about what the Official Solicitor has said.  It’s really essential that W has some time away from people.  He will charge at them because he wants people out of his sight, and he can’t verbalise that.

Judge:  So you think he’s regulating himself?

Grandmother: Yes.  And when he charges he can injure himself and others, which is why people have to leave.  Last time I went, he charged at me and the carers but they were able to go back in quite quickly.

Judge: How long was it before you went back in?

Grandmother:  I didn’t go back in.  I will be honest, he frightened me.  He’s a big lad, nearly 6 foot, and I’m a small disabled lady.  But staff were back in in five minutes.  If he charges, it’s because he doesn’t want them there.  From a family perspective, they’re doing exactly the right thing by leaving the room and giving W the space he needs.  The problem is- I’m sorry if I’m speaking out of turn, I don’t know, I find it very difficult but I’m his expert and my daughter is his second expert, and what we want is to keep W safe, and the people looking after him.  We do want the staff to be protected as well. The history is that he’s injured staff, and staff have been hospitalised and staff have left because of stress and not being able to cope and that affects his care. The other thing is, I will not support another expert coming in and making judgments about W at this moment in time.  Mr M [Note: I don’t know who Mr M is or what is role is] has been absolutely brilliant, and he comes from an external organisation.  Also, we’ve engaged with the CQC with regards to looking at DOLS and they’ve extended their remit and they’re an external organisation and they’ve gone in and monitored his care.  Introducing new people to W is difficult and it’s difficult for the family and for professionals too.  We’ve all got enough to do.  I hope I haven’t spoken out of turn, Your Honour.  We love W and we want him to be safe, and his current placement has been absolutely brilliant.

Judge:  Thank you.  It’s the family who are the experts because you are the person who has known him for the longest.

Counsel for LA:  Do you want me to respond on seclusion?

Judge: I don’t need you to respond.  I will leave in [the paragraph of the order dealing with seclusion] with additional wording in bold. I have some sympathy with the concerns the Official Solicitor has raised about practices of seclusion, but it seems to me that one can see, inferentially at least, the justification for it in W’s best interests – and in terms of the proportionality of this step, given his practice of charging at others, which gives rise to the potential of injury to himself and those who are caring for him.  But I do need some understanding of how the practice is used, how frequently and for what duration.  And I won’t make an order today for expert evidence. That needs to await a proper application, but it also needs to be considered in light of what Mr M has to say – assuming he’s provided reports to the local authority about how W can best be managed.

Counsel for the LA: I would add that although the seclusion is in part to manage the risk to the care support workers, that’s also a matter of concern to W, because of the risk they’ll leave the placement.

Judge: Continuity of care is very important because he’s beginning to establish relationships with these people, which is very important.

The next hearing will be on 24th April 2024, before HHJ Rowland in Birmingham.

Celia Kitzinger is co-director of the Open Justice Court of Protection Project. She has observed more than 500 hearings since May 2020 and written more than 100 blog posts. She is on LinkedIn (here), and tweets @KitzingerCelia

[1] Seclusion is defined in the Mental Health Act Code of Practice as follows.  “Seclusion refers to the supervised confinement and isolation of a patient, away from other patients, in an area from which the patient is prevented from leaving, where it is of immediate necessity for the purpose of the containment of severe behavioural disturbance which is likely to cause harm to others” (para 26.103)

Two hats: Mother as Rule 1.2 representative and (now) litigation friend

By Celia Kitzinger, 11 April 2024

This was a short hearing about a long-running case[1] concerning a man in his twenties (MA) who has a learning disability and autism.  Following an unpublished judgment by Hayden J back in July 2021, MA lives at a placement where he is deprived of his liberty.

 In July 2022, the local authority sent a COP DOL11 renewal application to the court requesting renewal of MA’s deprivation of liberty under the Re X streamlined procedure[2], but there have been a number of delays – some due to a backlog of applications in the court system, and some caused (says the local authority) by his mother.  

At the last hearing, on 23rd February 2024, seven weeks earlier (we blogged about it here: Judge declines to authorise a deprivation of liberty (for now)) the mother – who is also MA’s Rule 1.2[3] representative – said that she’d not received or had time to consider her son’s updated care plan or his Positive Behavioural Support plan.  The observer wrote: “Given that MA’s mother had been unable to file a witness statement that reflected her views on MA’s current care, the judge declined to authorise the deprivation of liberty at this hearing. He listed the case again for a one-hour hearing at 2pm on Wednesday 27th March 2024.” So, this was that hearing held, as previously, before Deputy District Judge Reeder, sitting (remotely) at First Avenue House.

In an opening summary, counsel for the applicant local authority, London Borough of Haringey,  Rebecca Hancock of Field Court Chambers, said that MA’s mother/ Rule 1.2 representative has now read the relevant documents and provided a statement in response which raises some issues which would be properly dealt with as s.16 Welfare proceedings, rather than a second or third go at dealing with this under the streamlined procedure.  This includes the mother’s concerns about medication,  support levels, activities and social stimulation, and contact between MA and his family.

The judge noted that “arrangements made in relation to family time didn’t appear to correlate with what was actually happening” and told counsel to make sure the new care and support plans were up to date.  The court order of March 2022 required active review of family time every three months, but that hasn’t happened.  On behalf of MA, via his mother/Rule 1.2 representative, Richard Alomo of No5 Chambers said that there hadn’t been any review of family time – but that this has now been provided for in the draft order, which (with both parties’ agreement) also reconstitutes the proceedings as a s.16 Welfare case.  The parties have also agreed on what evidence needs to be before the court for the next hearing: my understanding is that it includes information about staffing levels, how waking night care operates, the current activity plan, and a review of contact arrangements.

I think the parties disagreed as to whether or not the judge should authorise MA’s ongoing deprivation of liberty in his current placement while the broader issues are considered. I haven’t seen the final order and I’m not sure whether the judge did or did not do so.

The parties also disagreed as to whether or not his mother should act as MA’s litigation friend in the reconstituted s.16 proceedings. The local authority thought the Official Solicitor should take that role, in part because of the possibility of a conflict between the mother’s strong views about contact with her son, and the need to act impartially as MA’s representative.

The judge said that the court “might now have reached the end of the road as far as the Re X procedure is concerned” given that “you had one stab at redoing it and things were still not in proper order”.  He said he was “presently minded  to reconstitute it as a welfare application”.  He considered the question of whether or not the mother should be appointed as litigation friend, noting that the Official Solicitor is the litigation friend of last resort and that the mother had “conducted herself perfectly properly as a 1.2 representative at the same time as being MA’s mum”.

“The ability she’s shown to wear two hats is the same for a litigation friend.  Nobody has raised issues or evidence to support her being prevented from being litigation friend.  When talking about family time, she needs to be led by MA’s wishes and to support MA’s wishes.  I can see nothing in the paperwork, nor has anyone pointed me to it, that would constitute a challenge that mother couldn’t meet wearing both hats.  Unless there’s a compelling argument against it, then, I will appoint Mum as litigation friend for MA.  If things reach an impasse, I can reconsider that position, but let’s hope that problem does not crop up.”

We hope to observe when the case is next back in court.

Celia Kitzinger is co-director of the Open Justice Court of Protection Project. She has observed more than 500 hearings since May 2020 and written more than 100 blog posts. She is on LinkedIn (here), and tweets @KitzingerCelia. She can be contacted via openjustice@yahoo.com

Footnotes

[1] I discovered that other observers had actually watched this case  – before first Williams J and then Cohen J –  right back in the very first month at the beginning of our Open Justice Court of Protection Project in 2020. Here’s what Upeka de Silva says about it in June 2020 – in the very first blog post we ever published.   “The case (listed as Case 13155577 Re: M), created a rollercoaster of emotions.  It related to a contact order between a mother (the applicant), a brother (litigation friend) and a local authority care home in which P was currently residing. While there were Covid-19 related concerns in relation to visiting, the primary tension seemed to be about a breakdown in trust and cooperation between the mother who wanted to bring and share lunch with her autistic son and the care home who had refused her admittance for a period. It was heart-breaking to think this had to come to court. On the other hand, Mr Justice Williams maintained unwavering focus on what is right for P and preventing him being exposed to a toxic atmosphere. The hearing lasted an hour, an order requiring both flexibility and stability was granted, and I left feeling reassured that person-centred decision-making, an issue I feel strongly about, prevailed.” (Upeka de Silva, June 2020, One and a Half Remote Hearings in the Court of Protection) ( Also covered by David Haxon, July 2020 (before Cohen J) “A stop-start hearing”).  There don’t seem to have been public observers (at least known to us) at the subsequent hearings before Hayden J

[2] See  ‘Failed Re X’: Deprivation of liberty and Re X (the streamlined process) – a social work perspective.

[3] What is a Rule 1.2 representative

Family tragedy and institutional delay in best interests decisions about life-prolonging treatment

By Celia Kitzinger and Jenny Kitzinger, 9th April 2024

The judgment has subsequently been published here: NHS North Central London Integrated Care Board v PC & Ors [2024] EWCOP 31 (T3)

In July 2020, a woman identified in the judgment as “PC”, collapsed at home with a cardiac arrest. This was totally unexpected: she was otherwise fit and well (and only in her early 30s). Despite resuscitation from her family and then from the Ambulance service, her heart stopped beating for at least 30 minutes. She sustained severe generalised hypoxic brain damage.

It turns out, from later investigations, that she has “long QT syndrome”. This is an inherited heart problem that affects the heart’s electrical activity and can cause cardiac arrest (there’s an NHS page about the condition here). She wasn’t aware of this – and the NHS does say that some people with long QT syndrome don’t have any symptoms and don’t know they have this condition until something goes wrong.

PC had been a lively, active, fun-loving person who loved to walk outdoors, travel, and listen to music. At the time of her collapse, she’d been about to start studying for a biomedical degree 

More than three years after her cardiac arrest, PC has been assessed as being in a disorder of consciousness in the lowest end of the spectrum of awareness (Minimally Conscious State minus [MCS-]). This means she is able to focus on and track objects or people in her environment. When subject to interventions that might be expected to cause pain (and sometimes spontaneously too) there is also facial grimacing, moaning and profuse sweating – but there is a question mark over whether or not she actually experiences pain. She’s unable to communicate or interact socially with anyone, including family members. She cannot show that she recognises people and is unlikely to be able to discriminate between them. She breathes on her own, but receives clinically assisted nutrition and hydration (CANH) via a tube into her stomach.

According to the independent expert, Professor Derick Wade, Consultant in Neurological Rehabilitation: “Almost all recovery seen after hypoxic brain injury occurs within 12 weeks, possibly with a few people improving a little over the second 12 weeks”. The medical consensus more than three years on is that PCs condition is permanent and there is no prospect of any improvement.  

Like most people, unfortunately, PC hadn’t made any formal advance decisions about what she would want in this situation. Nor had she ever discussed what she might want with her family. As her sister said, “It never crossed anyone’s mind before to even speak about it because she was very healthy”. 

So, it was up to those providing life-sustaining treatment – and now up to the judge – to decide whether or not continuing to provide it is in PC’s best interests. 

This blog post is divided into two parts.  

The first part (“I. Best interests and delay”) is largely based on the documentation received from the court[i].  Without it, we’d have very little idea of what was going on. It should provide a useful summary of the case as it stands at present – and since the case will be back in court in late April, it will provide useful background reading for anyone wanting to observe that hearing.  

The second part (“II. The hearing”) deals with what actually happened in court on the day. It gives a sense of the challenges faced by observers, and also of the kinds of procedural issues the court has to deal with in addition (and prior) to hearing substantive weighty moral and legal end-of-life issues. For non-lawyers, we hope it conveys a sense of what lawyers spend a lot of time doing – arguing about reporting restrictions, searching for colleagues willing to act pro bono, and arguing for or against adjournments – all the messy business of law-in-action.

I. Best interests and delay

There seems to have been a delay in bringing this application to court – and indeed, a delay in considering whether or not continuing treatment was in PC’s best interests. 

As far as we can tell from what happened in court, and from the documents we’ve received, PC was diagnosed as having a “permanent” disorder of consciousness in Spring 2021, following multiple testing and brain scans at the Royal Hospital for Neurodisability (RHN) where she’s an inpatient. However, there was no best interests meeting with relevant professionals and members of PC’s family until March 2023 (so two years after her MCS- became “permanent”). There was no explanation available to the court as to why this best interests meeting was so delayed. 

The apparent failure of the Royal Hospital for Neurodisability to hold a timely best interests meeting for PC is especially surprising given the court had extensively criticised the RHN for delay in decision-making about another patient, ‘GU’, in June and July 2021 – so just a few months after PC was admitted to their long-term care ward.

The case of North West London Clinical Commissioning Group v GU [2021] EWCOP 59) concerned a 70-year-old man in a prolonged disorder of consciousness (‘GU’) who had been cared for in the RHN for many years. The (then) Vice President, Hayden J commented that the hospital (an acknowledged ‘centre of excellence’) was actually “a long way behind the curve” in engaging with up-to-date legal and professional standards. Reviewing the evidence presented in the independent report, and hearing from the family, Mr Justice Hayden considered it “highly likely” that GU had been subject by the RHN to treatment that was not in his best interests for some time. He also criticised the fact that the RHN were not party to the proceedings, commenting that “The hospital can’t be allowed to hide away from responsibility by not confronting decisions that need to be taken and then not joining legal proceedings”.  We blogged about the case here:  Clinically-assisted nutrition and hydration: Decisions that cannot be ignored or delayed. 

In a supplementary hearing after deciding the substantive matter before the court in GU, the judge made a series of very powerful observations about the obligations imposed upon treating bodies to ensure proper consideration of whether continuing treatment is in a person’s best interests, and to take proper steps to secure timely resolution of any dispute. See our earlier blog post: “Burdensome and futile” treatment and dignity compromised: Poor practice at a leading UK hospital. We would have expected this case to have prompted the Royal Hospital for Neurodisability to ensure best interests decision-making for all patients in their care – including PC.  

It was clear that the Official Solicitor had the same expectation. In her position statement for the PC case, the Official Solicitor referred back to the case of North West London Clinical Commissioning Group v GU [2021] EWCOP 59 and expressed a concern that “lessons may not have been learned, and significant delays in bringing cases of this nature to court are still occurring”. She further submitted that there should be “an independent review of the evidence disclosed by the ICB and RHND to ascertain whether the protocols and procedures in place to ensure timely best interests decisions are made for patients in PDOC are consistent with the Royal College of Physicians Guidance and are sufficiently robust to ensure that delays in cases of this kind will not be repeated”. 

A documented best interests meeting for PC did not finally take place until nearly two years after her diagnosis of her condition as permanent, in March 2023. At that meeting all present agreed that it was no longer in PC’s best interests to continue with clinically assisted nutrition and hydration (CANH). The treating clinicians were all of this view, and so were the family. Her mother said that PC “wouldn’t want this life as she was independent and active” and her friend said “hand on heart she would want to go”. The position of the family was confirmed in a letter written by PC’s sister received in early April 2023. Their view at that point was that this was not a quality of life that PC would have found acceptable for herself.

An independent second opinion expert, Professor Derick Wade, also concluded that there was no prospect of improvement in PC’s condition and, after speaking to the family, he also came to the view that it was no longer in her best interests to continue CANH. After review by the RHN Ethics Committee in May 2023, it was agreed that CANH would be discontinued on 14th June 2023.

Then, following a visit from a cousin in early June 2023, both parents changed their position and stated that they now felt that CANH should continue.  

In subsequent statements, this cousin stated that PC “was a fighter who held onto life very tightly”. Her view is that, whatever the medical evidence says, “we as her family will always have hope that one day [PC] will eventually heal; time is the best medicine”. She described looking into PC’s eyes and feeling that PC is saying to her “I want to live… do not let them take my life away from me…. I can definitely see in her eyes that she would want to continue living and having hope that one day her body, mind and soul will recover from this trauma”. 

The mother says she feels “guilty” about the decision made at the previous meeting – which she sees as about “killing” her daughter. She wrote: “[PC] is my daughter and as her mother I cannot bear losing her as she is the reason I am alive. I fight every day for [PC].  I will commit suicide if [PC] dies...”. 

Her father says he believes that “she is fighting” and will “come back to life”. He wrote: “Please do not stop her medications as she is our beacon of light… As a father, I want the best for my daughter and she deserves to live”.  

Her mother told the solicitor that they are hoping for a miracle and that she would “prefer [PC] to give up on her body herself and pass away like that; I don’t agree with withdrawal of CANH”. She believes “if she is to let go herself it would be natural and not by the hospital”.  

A friend of PC’s now opposes withdrawal of CANH out of concern that the mother “may not be able to cope mentally or emotionally with the consequences”. 

Other family members, notably PC’s sister (and possibly her other siblings – this wasn’t clear) maintain their original position but have chosen no longer to be involved in the process.

Following the parents’ change in position in June 2023, a court application could – maybe should – have been made immediately. 

Instead, further assessments were completed. They continued to show a low level of responsiveness, and no evidence of significant awareness. There seems to have been an increase in pain behaviours such as crying, grimacing, moaning and frowning. Despite pain medications and an antidepressant, PC often shows apparent distress in response to suctioning and at times when staff are handling her, e.g. washing her, or moving her into a wheelchair, and also sometimes these occur spontaneously. The clinical evidence is that she does not smile or display pleasure. 

These pain behaviours are distressing for the nursing care team and to family members – some of whom do not visit because it is so distressing to observe. It was stated that between 1 August 2023 and 31 January 2024, PC was visited on 14 out of 184 days – mainly by her mother and sister. [Note: At a subsequent hearing, the number of visits was disputed – it seems visits take place without family members necessarily signing in and we think it was accepted that there have been many more visits than indicated here.)

An application to the Court of Protection was eventually made on 2nd February 2024. That’s 3 years after PC was diagnosed as having a “permanent” disorder of consciousness, and nearly a year since the original best interests decision was made that continuing treatment was not in her best interests.  

The ICB (North Central London Integrated Care Board) is the applicant in this case (this is the ICB that commission PC’s care). The application is seeking a determination under the Mental Capacity Act 2005 that PC lacks capacity to conduct proceedings and to make decisions regarding her medical care and treatment, and that it is lawful and would be in PC’s best interests for those treating her not to continue to provide CANH and for her to transfer to a palliative care pathway.

The Vice President, Mrs Justice Theis (we think on the papers, i.e. without an actual court hearing) made directions in February to join PC as a party to the proceedings, invited the Official Solicitor to act as PC’s litigation friend, and gave directions to file evidence, including evidence from the applicant ICB addressing any delay in bringing the application. She also made a transparency order.

Having considered all the evidence to date, the Official Solicitor “with great sadness” and subject to hearing oral evidence from the family and from the medical experts, takes the position that the benefits of continuing CANH are outweighed by the significant burdens – especially the risk that PC may be experiencing pain. The Official Solicitor also raised a concern about “unacceptable delay” in bringing the application to court. Furthermore, said the Official Solicitor, “it remains unclear if the question of whether it is in PC’s best interests to continue CANH was considered at all in the period from 15 March 2021, when she was admitted … for long term care, and 8 March 2023, when the process of making a best interests decision was started”.  

The hearing (COP 14034582) before Mr Justice Cusworth was listed for two and a half days, from 25th-27thMarch 2024 – but in the event it was adjourned just after half past two on the first day. It will be back in court on (some or all of) 24th, 25th and 26th April 2024.

II. The hearing

We didn’t know what this hearing was about in advance – Celia just happened to choose it as one to observe, and all the information in the previous section emerged later. Celia (after some delay caused by confusion about the transparency order discussed below) was eventually able to alert Jenny, who then joined from lunchtime onwards.

It was a hybrid hearing, starting at 11am on 25th March 2024. Counsel and the judge were in the physical courtroom, but some people, including one medical expert, were attending remotely via video-link. Hybrid hearings can be challenging for those of us on video-links – in particular it can be hard to hear what’s going on in the court, and we rely on someone to move the camera (or to set up additional cameras) to capture counsel, the judge, and any witnesses.

It was quite a disjointed hearing with several adjournments and with a muddle at the beginning which negatively affected transparency and open justice.  

In summary, here’s what happened, under three hearings (1) Transparency issues; (2) Legal representation for the mother; and (3) Considering delay.

1. Transparency issues (Celia)

The applicant counsel – be-wigged, and distant to the camera so I had no idea who he was – gave a verbal description of the transparency order already made by Mrs Justice Theis (which observers had not been sent). He explained that the order protects (as usual) P and P’s family. It also protects 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. 

Following counsel’s account, the judge said “during this hearing until the end when the transparency order can be reconsidered, there must be no reporting of what is going on in court”.  

This was a very unusual restriction. We are normally free to blog, or otherwise communicate about hearings during adjournments and breaks in the hearing and before the judgment – and have done so frequently.  

Counsel then offered to give an opening summary of the case but the judge said, “I don’t require any more detailed opening” – so that left me in the dark as to what the case was about.  

This was all extremely frustrating because on joining the hearing, I’d noted that Professor Derick Wade had been named as someone available to give expert evidence – and this alerted me to the possibility that the case would concern someone in a prolonged disorder of consciousness, since that is Professor Wade’s area of expertise. But (a) I didn’t know that for sure since there was no opening summary; and (b) I couldn’t alert anyone else to this hearing since the judge had said I mustn’t report “what is going on in court”. I wanted to alert other members of the public that this might be a hearing of interest to people with family and/or professional interests in prolonged disorders of consciousness and end of life decision making (specifically Jenny Kitzinger, and the PhD student we both supervise, Rhiannon Snaith). What the judge had said meant I couldn’t do that, and I wasn’t sure whether or not this accurately reflected the transparency order made by the previous judge (Theis J) and if not, whether the judge had intended to extend the transparency order made by Theis J.

I sent an urgent email to the judge via the RCJ email address:

Attnt: Mr Justice Cusworth
Please could someone send me a copy of the TO for this case.  I had understood from what counsel said that it was in the usual terms except for including treating clinicians, but from your subsequent comment, the restrictions sounded far more draconian.  I am concerned from an open justice perspective both not to breach the TO and also to ensure that it is not in fact more restrictive of reporting than it needs to be in the circumstances of the case.

I am also finding this case very hard to follow as there was no opening introduction (as recommended in the former President’s guidance).  Nor have I been able to request Position Statements since I do not know the name of the male barrister and have had to guess which “Ms Watson” might be the female barrister.

I would appreciate your support with this matter since I know the judiciary does aspire to transparency.

The judge responded to the effect that he had not intended to extend the restrictions beyond those already in place in the order made by Theis J, sent me the Position Statements, and asked whether it would helpful for him to request a summary. Thank you!

By this time, though, the ICB had asked for a variation in the transparency order along the lines the judge had so fortuitously suggested, asking for “no blogging today until there’s greater clarity about the issues in this case”.  As I still didn’t really know what the hearing was about (not having yet had time to read the position statements), I wasn’t in a strong position to oppose this. I did turn my camera on and raise with the judge the fact that I’d now contacted a couple of people to tell them about the hearing (Jenny Kitzinger and Rhiannon Snaith who have research interests in prolonged disorders of consciousness and end-of-life court decisions respectively). I also said that I’d like to be able to say something about the issues before the court on the Open Justice Court of Protection webpage under “Featured Hearings” (granted!).  Given that, at that point, it appeared that the restriction on blogging would last for only a couple of days, and I wasn’t actually planning to blog in that time period anyway, I didn’t press the point. 

Later, when it became apparent that the case wasn’t going to be decided in the next couple of days,  and that it would be a whole month before it would be back in court, I checked back with the judge and was told I could write a blog – which is how this blog post became possible.

2. Legal representation for the mother

The ICB was represented by Rhys Hadden and PC was represented via her litigation friend the Official Solicitor by Claire Watson KC (both of Serjeants’ Inn Chambers). 

The mother was in court, but unrepresented. She asked to be joined as a party to the proceedings and for the hearing to be adjourned so that she could find a legal team.  

She was crying and her words were translated via an interpreter.  She said, “I don’t want to lose my daughter like I lost my other daughter, otherwise I will kill myself”.  Her other daughter, it transpired, had died by suicide

The judge was sympathetic but firm: “Is there a solicitor you have approached already – someone you want to instruct?”

“Right now there is no one”, she said, “but we can research and find”.

“How long do you think you will need to find a  solicitor and instruct them and then come back to court?” asked the judge

“In shortest time as possible”, said the mother.

The judge expressed concern (“I don’t want this to be adjourned for a lengthy period”) and turned to counsel, both of whom opposed the application for an adjournment.  Counsel for the ICB acknowledged there “has already been delay” and said “further delay is not in PC’s best interests”. In particular, the ICB “would not want instruction of further experts”.  Counsel for PC pointed out that as the mother wasn’t a party, she’d not even seen the papers before the court until a few days ago. However, she said “the Official Solicitor feels strongly there must be a prompt determination and any further delay would be contrary to those interests. With a heavy heart and great sadness, we do not feel able to support an adjournment on this basis”. 

The judge took a different position.  Given, he said, the “extraordinary delay” there has been already, he “can’t help feeling a short further period of delay would not be disproportionate”. 

The judge said he would rise to allow time to find out how quickly it might be possible for the mother to find a legal team and come back with the case; once he had a suggested time-line he would make a decision as to whether that was proportionate.  Addressing the mother directly, he said, “What I’m at the moment NOT minded to direct is that you should instruct your own medical evidence because that would lead to a much longer delay”. 

Counsel returned with the matter still unresolved and the court rose early for an extended lunch break.  As counsel for the ICB said, any further delay should be “purposeful”. If there is no realistic possibility of legal representation for the mother, then there is no point in delaying further.

Resuming at 2pm, counsel announced that they’d found a colleague, David Lawson, willing to act for the mother pro bono. 

3. Considering Delay (Celia and Jenny)

Having adjourned the substantive matter of whether or not continuing CANH is now in PC’s best interests, the judge suggested that the matter of “delay” in relation to considering her best interests over the years and months since her original injury could be addressed over the course of the remaining time already allocated to this hearing.  Counsel were in court and doing it now would free up time next month.

Counsel for the ICB made the rather surprising submission that it wasn’t in fact necessary to spend any time considering the delay.  This was because, he said, both the hospital (which, anyway, wasn’t his client and wasn’t in court) and the applicant (the ICB) accept there has been delay in bringing this case to court. 

The Official Solicitor pointed out that “simply accepting there’s been delay doesn’t address the issue of WHY there has been delay. The Vice President said there should be evidence about why there was delay”.

The judge clearly shared the view put forward by the Official Solicitor and suggested that if the ICB was not ready to proceed today, then there were still two more days of allocated time for the hearing: “you could file tomorrow and I could decide on Wednesday”.   Counsel asked for a longer deferment, pointing to the “risks of the court making findings against a non-party”.  Although the Official Solicitor pointed out that Theis J had asked for an explanation of the delay back in February, so that the answer should have been prepared and set out in writing before the court by now, the judge decided that it would be preferable to have a careful explanation set out in writing and gave the hospital 14 days to produce something to be considered at the next hearing.

Delay in making best interests decisions about  life-sustaining treatment for PDoC patients is a problem that we’ve been highlighting for almost a decade now[ii]. Over the course of the last ten years we’ve supported many families in cases reaching court and delays have repeatedly been challenged in hearings e.g. in 2016 Hayden J‘s final judgment highlighted the imperative to avoid delays that were not ‘clinically purposive’.  Stating that “respect for a patient’s autonomy, dignity and integrity requires all involved in these difficult cases to keep in focus that these important rights are compromised in consequence of avoidable delay” (para.13 Cumbria NHS Clinical Commissioning Group v Miss S and Ors [2016] EWCOP 32).

Some of the underlining causes of delay have been addressed since then by changes in the way cases are managed in relation to court hearings – a change that resulted from the Re Y judgment (An NHS Trust v Y UKSC 46). In addition, more timely decision-making has been supported by the production of the RCP National Clinical Guidelines on Prolonged Disorders of Consciousness following Sudden Onset Brain Injury(2020) and the British Medical Association Guidance on Clinically Assisted Nutrition and Hydration (2018). These guidelines not only emphasise the importance of timely and regular best interests decision-making but give step-by-step guidance on how to do this. 

But it’s still the case that delay in best interests decision-making remains one of the main reasons family members approach us for help. In spite of positive changes it seems that some centres may be struggling with a backlog of cases where no best interests meetings have previously been held, and they may still be finding it difficult to conduct best interests decision-making processes in a timely manner, perhaps especially in the face of family divisions or fluctuating feelings. We also suspect that some centres caring for a great many PDoC patients may still be avoiding making best interests assessments all together – a suspicion in part informed by the fact that, as far as we can see, very few cases – or no cases at all – are reaching court from some centres which we know to have large numbers of PDOC patients. It is unlikely that these centres have no situations where there is disagreement about the person’s best interests, or where the decision is finely balanced. An important questions for us (and for the Official Solicitor?) is what is happening in these centres, who continue to maintain many patients in PDoC without ever triggering court applications about their best interests.

So, this all means that the next hearing for PC is not only significant for PC and her family, but may have wider implications for the care of other patients.

Celia Kitzinger is co-director of the Open Justice Court of Protection Project. She has observed more than 500 hearings since May 2020 and written more than 100 blog posts. She also co-directs (with Professor Jenny Kitzinger) the Coma and Disorders of Consciousness Research Centre. She is on LinkedIn (here), and tweets @KitzingerCelia. She can be contacted via openjustice@yahoo.com

Jenny Kitzinger is Professor of Communications Research at Cardiff School of Journalism, Media and Culture. She also co-directs (with Professor Celia Kitzinger) the Coma and Disorders of Consciousness Research Centre and runs online training for healthcare professionals about law and ethics. She tweets @JennyKitzinger

[i] We’ve received Position Statements from the applicant, the North Central London Integrated Care Board, (represented by Rhys Hadden of Serjeants’ Inn Chambers) and from the Respondent, PC by her litigation friend, the Official Solicitor (represented by Claire Watson KC also of Serjeants’ Inn Chambers), plus an “Agreed Case Summary and List of Issues”.  The mother was joined at a party during this hearing: we have no written statement from her.

[ii] Kitzinger, J. and Kitzinger, C. 2018. Why futile and unwanted treatment continues for some PVS patients (and what to do about it). International Journal of Mental Health and Capacity Law 23 , pp.84-149; Kitzinger, J. and Kitzinger, C. 2017. Causes and consequences of delays in treatment-withdrawal from PVS patients: a case study of Cumbria NHS Clinical Commissioning Group v Miss S and Ors [2016] EWCOP 32. Journal of Medical Ethics 43 , pp.459-468. (10.1136/medethics-2016-103853)

“The immediate steps in the aftermath of that judgment”: Increasing concerns, a TZ care plan, and judicial continuity

by Daniel Clark, 8th April 2024

In a recent published judgment, it was found that  EE has capacity to make decisions about sex and contraception ([2024] EWCOP 5).  Her decisions may possibly be unwise ones (she’s said she wants to have a baby) but as the judge put it “however strong is the impulse to protect, the follies of the capacitous are not the business of the Court of Protection” (§50).  The judgment poses challenges on the ground for the people caring for EE since the court also found that she lacks capacity to decide on contact with others, including her former boyfriend.  

The hearing I observed on Wednesday 13th March 2024 (COP 13961414) was a case management hearing in the aftermath of that judgment to explore its implementation in practice, i.e. revisions to her care plan, including how she would be supported to make contact with people, and what staff would do if she decided that she wanted to have sex with someone.  Not much progress has been made, so it was a short hearing.  

I’ll report on the hearing in the third section below, but first I’ll say something about how to access published judgments, since that’s likely to be of use more generally to other people interested in the Court of Protection who may not have done this before, and then (second) I’ll summarise the published judgment, before describing (third) what happened in the hearing.

1. Accessing judgments

It is quite unusual for judgments in the Court of Protection to be published on an open access website, such as the National Archives (which is my preference for locating judgments) or BAILLI (which is useful for locating earlier judgments)  Throughout the court system, one-in-five listed judgments are not published at all, though I suspect this number is much higher for Court of Protection judgments. 

When we know something about a case before attending a hearing, this is usually because we’ve previously blogged about it or because somebody has previously observed and told us what that hearing was about. 

However, we knew quite a lot about this case because – although we’d not previously observed it – a judgment had recently been published, and I was able to locate it.  

When I saw the listing, I remembered that Mr Justice Poole was recently “on circuit” in Sheffield, and I had a feeling that I recognised the case number. 

Having first used the search function on the Open Justice Court of Protection Project website (and found nothing, since we hadn’t blogged about it), I turned to the National Archives because I knew that a number of Poole J’s judgments had recently been published there. Unfortunately, the website does not have a function that allows searching for case numbers but I could narrow it down by setting a year limit of 2024, selecting Court of Protection judgments, and including the judge’s name. Below is a picture of my search. 

I had to click into a few and, just as I was starting to think I was mistaken, I found what I was looking for. While it is not possible to search for case numbers, each published judgment does include the case numbers in the top right-hand corner. You can see it in this picture: 

 

Although I’ve observed hearings where judgments have previously been published, I’ve not observed a hearing after the publication of a final judgment (at least, one that was also published and accessible to me).  I thought (rightly as it turned out) that this would give me an opportunity to see how the work of the Court continues after a ‘final’ judgment.

2. The published judgment

The judgment was handed down on 8th February 2024, following a hearing on 29-30 January 2024. I will briefly summarise this judgment before turning to the hearing I observed, but you can read the full judgment here:  https://caselaw.nationalarchives.gov.uk/ewcop/2024/5  

EE is a 31-year-old woman who wants to have a baby. However, at issue was EE’s capacity to engage in sexual relations, to decide on contact with others, and make decisions about contraception. 

Both parties agreed that EE lacks capacity to make decisions about contact with others. This is because of “her inability to use or weigh the risks that others pose to her […] recently she handed her smart phone to a stranger who had offered her money for it on the internet. She met him and he made off with her device without paying her for it. She had been unable to weigh the risks and benefits of this contact” (§29).

Both parties also agreed that EE has capacity to decide to engage in sexual relations. This is because to not do so “would exceed the practical limits to require EE to envisage the risks to her or her baby should she become pregnant following intercourse” (§26). In other words, there was certain information that EE did not weigh up but it would set too high a bar to demand that she must be able to weight it up before being assessed as having capacity. 

The applicant local authority, Sheffield City Council, submitted that EE lacked capacity to “make decisions about whether to use contraception” whereas the Official Solicitor, EE’s litigation friend, submitted that she had capacity to make “decisions about contraception”. 

When considering the issue of contraception, the judge was again clear that, “there are reasons to avoid setting the bar too high for capacity to make decisions about the use of contraception” (§43). The judge was not satisfied that pregnancy would bring too high a risk of physical or psychological harm to EE, and so this risk of hypothetical harm was not something she needed to be able to weigh up. 

The judge concluded his judgment with the following. I think this is worth quoting in full because it serves as a helpful reminder to those who assess capacity on a daily basis.

“With respect to her [EE], although she has thought the matter through, many would think it unwise for her to try to conceive, but it is not for me to advise her, and it is certainly not the role of the Court of Protection to intervene in the autonomous decision-making of an adult who has capacity to make decisions about sex or the use of contraception, however unwise the court may consider the proposed decisions are. Many capacitous people make unwise decisions about sex and contraception, sometimes with awful consequences for themselves and others, but however strong is the impulse to protect, the follies of the capacitous are not the business of the Court of Protection” (§50, my emphasis). 

3. The hearing on 13th March

On Wednesday 13th March 2024 at 9:30am, this case was back before Mr Justice Poole, who was sitting remotely ‘on circuit’ (via MS Teams) at Sheffield Designated Family Court. What was immediately clear was that there had been a change in the legal representatives. Pravin Fernando, of Serjeants’ Inn Chambers, now represented Sheffield City Council, and Hannah Bakshani, of St John’s Buildings, now represented EE (via her litigation friend, the Official Solicitor). 

This type of change is unfortunately not unusual, and it makes judicial continuity (as in this case) all the more important.

Counsel for the Local Authority acknowledged that the matter had been listed “to consider the immediate steps in the aftermath of that judgment on the 8th of February”. There had been a number of incidents, including EE absconding from her current placement and the discovery that EE had an online bank account despite the fact that “the court has previously made declarations that EE lacks capacity to manage her finances”. 

It also appeared that EE had been communicating with a man on the internet, who I will refer to as M. Counsel for EE explained that M “was the subject of a number of safeguarding concerns last year and, from memory, it was difficult to get to the bottom of who [M] was, how EE met [M], and what the relationship was”. Counsel for EE described it as “unfortunate he has now made a reappearance”, which struck me as somewhat of an understatement.

Of further concern was that, for some reason, a TZ care plan had not yet been drafted despite this being a month since the previous judgment was handed down. This was compounded by the fact that EE was being allocated a new social worker who was not yet fully familiar with EE.

As Celia Kitzinger explains in this blog, a TZ care plan refers to a case (A Local Authority v TZ) heard by Mr Justice Baker in 2014. Baker J had found that TZ, a 19-year-old man, had the capacity to engage in sexual relations but not for contact. There was therefore a need for a care plan to address how TZ could be assisted to form a sexual relationship without exposing him to harm. 

Given that EE also has the capacity to engage in sexual relations but not for contact with others, it is quite clear why a care plan of this sort is required. To not do so could pose an undue interference in EE’s freedom. The judge made an Order that Sheffield City Council file a TZ care plan, and updated care and support plan, prior to the next hearing.

Finally, the judge raised the matter of whether this case strictly needed to be overseen by a Tier 3 (High Court) judge. The case was before Mr Justice Poole as a result of “the difficult issues about capacity” (in the words of the judge). Now that these issues were determined, could the case be reallocated to a Tier 2 (regional) judge? This would (at least in theory) make it easier to find a judge before whom the case could be listed.

While the parties agreed that a Tier 2 judge could oversee a TZ care plan, Counsel for the local authority stated (and Counsel for EE agreed) that “the intricacies of contact and social media issues” meant the case required the oversight of a Tier 3 judge. Mr Justice Poole agreed to keep the case allocated to him, particularly because he felt there would be benefit from some level of judicial continuity. 

This case will return to court on Monday 10th June 2024, after the filing of further evidence. 

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 tweets @DanielClark132

“ I want to go home” – catching up with GNK 13 months later for the final hearing

By Celia Kitzinger, 27th March 2024

More than a year ago, back in November 2022, assistant psychologist Catalia Griffiths watched and then blogged about a (remote) hearing before Deputy District Judge Reeder concerning a woman in her 50s who was in hospital with Huntington’s disease.  

The title of the blog post she wrote, reflects what the woman (GNK) told the court: ““I don’t want to be here… I want to go home”.

Many of the cases we blog about are just a ‘snapshot’ of a hearing at a particular moment in time. It’s hard to track cases through the courts. There’s no way of setting an “alert” to tell us when a case is coming back – and even though arrangements are sometimes made at the end of one hearing as to when the next one will be, these are often vacated or rearranged.  

So when we happened to spot this case back in court again, we really wanted to know how GNK was doing and what had happened.

Thirteen months later, I watched the final hearing in this case (COP 1399280T) – which, as before, was heard by DDJ Reeder, sitting remotely at First Avenue House (listed as below) 

The outcome, as the judge acknowledged, is not what GNK had said she wanted. 

Background (from 2022)

Thirteen months ago, there had seemed a (remote) possibility that GNK might be able to return home. Although the judge was concerned that there was “a refusal by GNK to acknowledge her Huntington’s disease and a refusal to acknowledge the need for care”, he wanted the possibility of GNK  moving back home to be properly explored.  There were problems. Her home was apparently “significantly hoarded” and “not safe to get into”, and nobody appeared to know the financial arrangements for the tenancy.  

Meanwhile the hospital trust wanted to discharge her to an interim placement, while the move home was investigated. The draft order asked for authorisation for physical and chemical restraint if required to make that possible, but without sufficient detail on what would trigger the use of restraint, or lead to escalation in restraint. This was something that concerned the judge greatly. It also troubled the observer/blogger, who had used restraint in her previous role as a support worker. The judge asked for the order to be amended.  

That was pretty much all we knew.

The hearing on 29th February 2024

It was a short hearing because the parties had already reached agreement on a draft order but at an earlier hearing the judge had directed them to go away and just check that some additions to the standard authorisation would work on the ground, in practical terms (e.g. that there would be funding).  This hearing was really only to approve that agreed order, with those additions now confirmed. As the judge put it, it was about “making sure the ‘t’s were crossed and the ‘i’s dotted”.

I learnt that about a week after the hearing Catalia Griffiths observed back in 2022, GNK moved to a care home (I don’t know whether restraint was needed to accomplish this) and she’s been there ever since.  It provides 24-hour nursing case. 

This hearing was to make final declarations: 

1. that GNK lacks capacity to litigate, to make decisions in respect of her care and residence, to manage her finances, property and affairs and to terminate a tenancy and sign a tenancy agreement.

2. that it’s in GNK’s best interests to stay in her current care home, and to receive care and treatment there.

However, the Deprivation of Liberty Order is subject to a variation of the standard authorisation conditions, and those are what the judge wanted to go through.

One condition was that arrangements should be made for GNK to attend the church of her choice.  This is a Revivalist church which is said to “place their members in a trance” and I understand that  staff did not want to attend with her, so arrangements were to be put in place using agency staff if needed.

There were to be offers to go out into the community (e.g. to shops) without making this contingent on GNK having had a shower that morning (something she’s been refusing lately) as long as she is not malodorous and unkempt, and care home staff are to keep detailed and accurate records of all the times a trip in the community is offered and clearly record the reasons that this does not take place. 

Arrangements are to made for care home staff to work closely with the expert clinicians from [Hospital] in order better to understand the care needs of a person with Huntington’s – and I think it had been agreed that the local authority would fund specialist training from the Huntington’s Disease Association.

The standard authorisation expires on 17 January 2025 and the applicant will be asked to undertake a new assessment prior to its expiry.

Reflections

Given the extent of the nursing care that GNK is said to need, it’s hard to see what else could have been done under the circumstances.  The ‘additional conditions’ to the standard authorisation go some way towards creating positive benefits for GNK, given that she’s going to be living somewhere she said originally she didn’t want to be.

Finally, in terms of transparency, the judge was extremely helpful – ensuring that a summary was provided at the beginning of the hearing, and pointing out, when he asked counsel to go through the order, that they should do so “bearing in mind the observers haven’t seen it”.  I’m grateful to Monika Kreel of TV Edwards Solicitors (GNK’s solicitor) and Sophie Caseley of Garden Court Chambers (GNK’s counsel) – both via the Official Solicitor – for the anonymised version of their position statement, which assisted my understanding.

Celia Kitzinger is co-director of the Open Justice Court of Protection Project. She has observed more than 500 hearings since May 2020 and written more than 100 blog posts. She is on LinkedIn (here), and tweets @KitzingerCelia. She can be contacted via openjustice@yahoo.com

When P stops eating and drinking

By Ian Brownhill, 26th March 2024

This is not a blog about anorexia, withdrawal of artificial/clinically assisted feeding, nor is it a blog post about the ethics of voluntarily stopping eating and drinking (VSED). Rather, it is an attempt to explain the circumstances in which the Court of Protection might become involved in a case where a person has stopped eating and drinking. This post sets out broad principles and should not be relied upon as legal advice. From the outset, it is worth noting that for many people, stopping eating and drinking is simply part of their dying process.

The call

Most of the cases involving fluid or food refusal which resulted in published judgments relate to patients with anorexia nervosa. However, there is a variety of different circumstances in which food/fluid refusal occurs. Calls to Court of Protection lawyers tend to occur in these three scenarios:

  • P has stopped eating and/or drinking and expressed a reason for doing so. That reason might be political (a ‘hunger strike’), or, might be an attempted means to cause a change in their wider care and support arrangements;
  • P has stopped eating and/or drinking with a view to ending their own life (this is often referred to as VSED);
  • P has stopped eating and/or drinking but has not given any reason and care/health staff are unclear what, if anything, to do in the circumstances.

In respect of which call is most common, it is, in my experience that P has stopped eating to either change their situation or in some form of protest. That protest is not always what we would consider to be ‘political’ –  in fact that is relatively rare. 

A right to stop eating and drinking?

You will not find an explicit right in a statute which says that a person is permitted, or entitled, to stop eating and drinking. However, it is recognised by the law that an adult cannot be compelled to eat or drink if they have capacitously decided not to do so.

A helpful starting point is what Lord Goff said in Bland [1993] AC 789 at page 864:

“…the principle of self-determination requires that respect must be given to the wishes of the patient, so that if an adult patient of sound mind refuses, however unreasonably, to consent to treatment or care by which his life would or might be prolonged, the doctors responsible for his care must give effect to his wishes, even though they do not consider it to be in his best interests to do so.”

A person cannot therefore be forcibly fed  (be it by enteral or parenteral fluids or nutrition), when they capacitously refuse. Baker J (as he then was) put it simply in Dr A [2013] EWCOP 2442 at paragraph 30: 

“… if Dr. A. has the capacity to make decisions as to whether to take food and drink, he is entitled to starve himself to death if he so chooses. The question is: does he have the capacity?”

Trying the door handle

I recently heard Professor Paul Menzel, Dr Hope Wechkin and Dr Peter Reagan talk about the development of the Clinical Guidelines for Voluntarily Stopping Eating and Drinking in the United States. During their presentation, Peter Reagan spoke about one terminally ill woman who had commenced VSED and then stopped. He used the analogy of her trying the door handle: he said it gave her great comfort to know that she could end her life in that way if she chose. That analogy struck a chord with me as Ps who seemingly voluntarily stop eating and drinking, then start again, have been an issue of concern in some cases before the Court of Protection.

Often the court is concerned with whether the person is making a capacitous choice not to eat and drink. In those cases, the capacity assessment will be focused on whether the person is able to make a decision as to their hydration and nutrition. In the assessment, the relevant information is focused on whether, functionally, the person is able to understand, retain, use or weigh, the consequences of not taking fluid or food. If there is a functional deficit identified, the assessor then has to determine whether that is caused by a disorder of the functioning of the mind or brain. That can be a difficult assessment. One such difficult case was PH. 

The PH case was blogged about frequently when it was before the court[1] and ultimately a judgment was given by Hayden J (PH v Betsi Cadwaladr University Health Board [2022] EWCOP 16) that PH had the mental capacity to refuse hydration and nutrition. 

In this case, PH had a clear ongoing relationship with his treating clinicians, his lawyers and even the judge. Reading the blogs and the judgment, you will see how carefully his capacity was considered by the court. The court had a wealth of evidence in PH but that is not always the case.

In other cases, the issue of capacity has been more difficult or contentious:

In QJ a 87 year old man with vascular dementia stopped eating. In that case, P [QJ] did not answer certain questions put to him by his treating clinicians. Hayden J was keen to emphasise that the mere fact that someone has stopped eating does not mean that it should be concluded that they lack capacity to make that particular decision. 

In this blog , there is a report of where Williams J heard evidence and argument of 3 days in respect of a woman who was admitted to hospital having fractured her femur and then refused to eat. The reasons for her refusal were not articulated, at least in the blog.

In Nottingham University Hospitals NHS Trust & Anor v RL & Ors [2023] EWCOP 22, Sir Jonathan Cohen was faced with the scenario where nobody could engage P at all. The protected party, RL, a life sentenced prisoner, was in hospital having stopped feeding himself. His treating consultant psychiatrist assessed that he was “suffering from depression, and described him as virtually stuporous and mute. When she last saw him, he did not even flicker his eyes when she put papers in front of him and was not willing to communicate his wishes in any way at all. She described him as presenting as ‘quite shutdown.’” When the Official Solicitor’s representative tried to engage with him,  “he literally was not able to do so because RL would not come out from under the bedclothes; he remained completely invisible and would not engage in any way whatsoever.”

The other complicating feature that needs to be recognised when P stops eating and drinking is, that at some point, every P will lose the capacity to make decisions about their nutrition and hydration. Put simply, P will become unconscious or experience confusion or delirium with changes in the body’s chemistry and as organs shut down. At this stage, unless there is a valid and applicable advance decision to refuse treatment (ss. 24-26 MCA 2005), a best interests decision will need to be made. One of the matters to be considered in making that best interests decision will be  a person’s previous wishes and feelings as well as their values and beliefs. 

How the cases arrive in the Court of Protection

Just as in any other kind of case, matters involving a P who steps eating and drinking come to court when there is a dispute as to their capacity to make decisions as to hydration and nutrition, or, when there is a disagreement as to their best interests in this regard.

Whilst assessments in respect of P’s capacity to make decisions about to eating and drinking may be unusual, or practically difficult, the relevant law is relatively settled. This is reflected in the decisions above. The more challenging disputes will relate to P’s best interests.

The following issues need to be highlighted:

  1. Unlike in the United States, there is no clinical guideline in respect of people who chose to voluntarily stop eating and drinking. Clinicians who are choosing to support this decision (they cannot be compelled to provide treatment) will likely want reassurance that the steps they are taking are lawful and comply with P’s capacitous (and uncoerced) wishes or that they are in P’s best interests;
  2. Some cases have an abundance of evidence in respect of P’s wishes and feelings both before and after losing capacity to make a decision as to their hydration and nutrition. Not all cases do. In some cases, P simply stops eating and drinking and the explanation is unknown. It ought not be forgotten that P stopping eating and drinking can be simply a reflection of an untreated dental issue or the fact that they are approaching the end of their life in any event;
  3. Section 24 of the Mental Capacity Act 2005 allows a person to make an advance decision in respect of specific treatment to be carried out or provided by someone providing, “health care”.  It is untested as to whether that could include spoon feeding someone or providing them with nutritional supplements.  There is at least an argument, considering the Court of Appeal’s decision in JJ, that it might. In that case, giving a quadriplegic person a boiled sweet equated to medical treatment;
  4. Section 5 of the Mental Capacity Act 2005 does allow decision makers to conclude that a certain course of action is not in P’s best interests, even if that course (perhaps not to treat a particular injury, or not to escalate treatment for a disease)  would lead to their death: An NHS Trust & Ors v Y & Anor (Rev 1) [2018] UKSC 46;
  5. In any situation where a person is indicating that they want food and this is denied, it is likely to be very problematic for clinicians or carers following the decision of the Court of Appeal in Burke.  

The wider context and the future

Later this year, on 31 May 2024, I will be speaking at the Medical Law and Ethics Discussion Group, Oxford University about how English and Welsh law handles people who stop eating and drinking as a form of protest. Earlier this year, I spoke at the 4th International Conference on End of Life and the Law “Ethics, Policy, and Practice” (ICEL4) at the S.J. Quinney College of Law at the University of Utah in Salt Lake City, Utah, U.S.A as to how our laws differentiate between patients and protestors in these circumstances. It is (I hope) a fascinating subject and one which is steeped in British legal history, going back to the Prisoners (Temporary Discharge for Ill-Health) Act 1913 (designed to deal with suffragettes on hunger strike) and beyond. But, in reality, it is representative of a very small cohort of cases that come before the court.

Much more challenging is how VSED fits into the wider public (and legal) discourse around assisted dying/suicide and whether it is seen as an adjunct to that argument or an integral part of it. Equally, there is alarm that the concept of mental capacity has been used in a way to deny treatment to suicidal patients and that some patients, simply due to issues with their communication or cognition, have not been able to access medical care for physical health issues.

Whatever the broader issues are in society, if P stops eating and drinking, careful thought needs to be given to their capacity and then (if appropriate) to their best interests. 

Ian Brownhill is a barrister at 39 Essex Chambers who specialises in mental capacity, medical treatment disputes and wider public law, regulatory and safeguarding issues. Ian has acted in a number of food refusal cases in the Court of Protection and in a number of inquest/regulatory/safeguarding matters where a person has stopped eating and drinking. 

[1] Hunger Striking for his Identity: Autonomy, Capacity, and Justice ; Capacity for Litigation, Residence and Care: Hunger-Striker (WA) back in court; “What is he saying to us?” The ‘voice’ of a hunger-striking man in a best interests decision about his medical treatment; A ‘secret’ hearing on life-sustaining treatment

Committal hearing: Struck out and dismissed for procedural defects

By Celia Kitzinger, 25th March 2024

It was listed as a committal hearing – an application by Barnsley Metropolitan Borough Council to send “DB” to prison.  

It caught my eye because it wasn’t listed the way committal hearings are normally supposed to be.

The Practice Direction for Committal for Contempt of Court specifies that the name of the person alleged to be in contempt of court should be given in full.  But it referred to this person only by the initials “DB”.  And it says that, although the hearing is “public” there are “reporting restrictions”. 

Who is “DB”?  What has he done that the local authority is applying to send him to prison?  And why is he at risk of being sent to prison effectively in secret, without the public knowing – or being allowed to tell anyone – who he is?

I was sufficiently alarmed by this listing that I wrote to the judge (care of the Leeds Court of Protection hub) in advance of the hearing, raising my concern about the discrepancies between this listing and the guidance in the Practice Direction (albeit that it permits of exceptions).  I also asked for the link to observe the hearing.

The hearing

It was apparent from the outset that this case (COP 1406388T) has run into problems. 

Counsel for the local authority, Rebecca Titus Cobb (St John’s Buildings) introduced herself and counsel for the protected party (Richard Borrett, Kings Chambers).  She said that DB, the alleged contemnor, was not present, and was not represented.

At this point, I wondered if the court would actually proceed with the committal hearing and risk sending DB to prison in his absence.

The judge, Her Honour Judge Marson, didn’t seem surprised that DB wasn’t in court.  I subsequently learnt that he had a track record of not attending hearings.  

She did address at the first opportunity “the way this case is listed on Courtel” – i.e. my concern about the fact that DB had not been named in the listing.  My understanding is that, initially, the intention had been to name him, but the judge had: “… become aware that the defendant can apply to court for non-disclosure of their name and I’m not able to identify that opportunity to have been communicated to DB […] I don’t know if he would wish to make such an application.  That I hope explains why the entry on Courtel was changed to initials, in the event that such an application was going to be made and needed to be determined. Otherwise, it would be otiose, because the information would already be out there”.  The judge then checked with Rebecca Titus-Cobb, “Am I right that he hasn’t been notified?”.  “I suspect that is right”, she replied.  “I don’t know”.

It seems that DB has breached the transparency order designed to protect the privacy of the vulnerable person at the centre of this case EB, whose deprivation of liberty is before the court.  For reasons that weren’t clear to me, DB is parking his car near EB’s previous placement with Court of Protection documents visible through its windows.  He’s been doing this since mid-September 2023: one court order that he must remove this material had been apparently complied with (in October) but by November 2023 he had resumed displaying the material – and the local authority filed an application to commit DB for contempt of court.  

There was then a hearing on 13th December 2023, which DB was aware of but chose not to attend.  That hearing was adjourned until 9th January 2024 to allow time for him to apply for legal aid and get legal representation.  Again, though he chose not to attend.  This hearing, on 22nd February 2024 was yet another attempt to hold an effective committal hearing.

It failed – due to multiple procedural defects identified by the judge – defects which, she said, “have troubled me a great deal”.   

The following is taken from the oral judgment

“Firstly, Rule 21.8(5) states that the defendant’s name will appear on the court list unless the court makes a rule that their name should not appear.  I have for the first time this morning had the opportunity to read Esper (Esper v NHS NW London ICB (Appeal : Anonymity in Committal Proceedings)[2023] EWCOP 29).  The defendant has never been informed of his right to have rule 21.8(5) considered, or to make any representations about that.  It may be that if an application were made, there would be no merit to it, but I have not considered the merits of it.  The procedural irregularity is that he’s not had that opportunity.”

Secondly, the form that purports to be the application for the committal is wrong.  The local authority has not lodged a COP 9.  They have borrowed a form, M600 from another jurisdiction. It is the wrong form.

Thirdly, this court directed the defendant should be personally served with a notice of contempt by 19th January 2023, setting out the evidence relied on by the local authority, with a separate list of allegations numbered and identified separately to make it clear what it was being said he’d done, and when, and why it breached the order.  This was not done by 19th January, and no application to extend the time was ever made.  It was filed and served on Tuesday this week, less than 24 hours ago.  The notice of contempt filed on Tuesday has information presented in a manner which I consider to be confusing, using an “and/or” format which is insufficient to enable someone to identify which order they breached and when.

Finally DB has not participated in the proceedings but at no point has there been any consideration of a summons.

I have considered all of those defects and have had regard to Rule 20 of the Court of Protection Rules on appeals which states “The appeal judge shall allow an appeal where the decision of the first instance judge was […] unjust, because of a serious procedural or other irregularity in the proceedings before the first instance judge” (§20.14(3)(b)).  I am satisfied there are procedural irregularities and any decision I may made is likely to be successful on appeal, so I am going to strike out and dismiss this application for its procedural defects.  I am aware I can waive defects if I am satisfied this would cause no injustice, but I am not so satisfied.  I therefore dismiss the application that is before me today. 

I do not criticise parties for those defects in a context where there is, in my view, a need – an urgent need – for committal templates in the Court of Protection.  Without them, the parties and the court are challenged by everyone’s best endeavour to comply with the rules.  Clear templates are need to assist everyone.

I assume that if DB continues to display confidential material relating to the case in public, the local authority is likely to make a new application, and so we may see the committal case back in the listings in future.

Celia Kitzinger is co-director of the Open Justice Court of Protection Project. She has observed more than 500 hearings since May 2020 and written more than 100 blog posts. She is on LinkedIn (here), and tweets @KitzingerCelia