On not allowing the strong views of family members to prevail: A COVID-19 hearing

By Angus Mackenzie, 19 January 2022

Editorial note: This is the latest in a long series of cases concerning Covid vaccination. For an extensive consideration of the issues involved, see our earlier blog post “The politics of the pandemic in the Court of Protection“.

This was the second hearing in a case to determine whether it is in MK’s best interests to receive COVID-19 vaccinations in accordance with Government guidance and the views of his treating team. It took place by video link on the morning of 10th January 2022, before District Judge Mullins (COP 12770223).

At the previous hearing (23 December 2021, which I blogged earlier), both the patient and his mother were suffering from COVID-19, and his mother was too ill to attend the hearing.  Thankfully, both have now recovered and MK’s mother was able to join the hearing by telephone.

The applicant CCG was represented by Elizabeth Fox.  MK was represented (via his litigation friend the Official Solicitor) by Winsome Levy.  The local authority was represented by Shadia Ousta Doerfel. MK’s mother was a litigant in person.  

Counsel for the applicant CCG provided a summary of the case so far.  

The patient is 37 years old with “severe cerebral palsy”, “severe learning disability”, and “end-stage renal failure”.

He lives in a 24-hour supported living placement.  He  was described as “wheelchair bound”, requires assistance to get out of bed and attend to his personal care and is “extremely clinically vulnerable”.  He attends hospital for dialysis three times a week (which increases his potential exposure to the virus).  

At the hearing of 23 December 2021, it had been determined that he lacks litigation capacity and also lacks capacity to make his own decisions about vaccination.  

He is also unable to express his wishes and feelings about vaccination.  

Since 2013 he has received annual vaccination for influenza – most recently in December 2021 – and his mother has not raised objections to this. 

The CCG’s application is to administer either the Pfizer or Moderna COVID-19 vaccinations and boosters. MK’s mother opposes the application.

The hearing

From the outset of the hearing, it became clear that MK’s mother’s relationship with the care home where MK is currently living is under considerable strain. She was critical of a number of aspects of his care and was keen to make a case for having him back home with her, partly because this would limit the number of carers who came in contact with him and hence reduce his risk of becoming reinfected but also because, as his mother, she believes she could do a better job. “I’m a healthy, strong, loving mother,” she said, “He’s my only son and I want to care for him[1].

DJ Mullins took pains to point out that the question before the court was specifically whether vaccination was in MK’s best interests and that the Court was unable to consider where MK should be living in the absence of an application on the matter. It had been a different judge some time ago who made a decision about where MK was to live, and there was no information at that time that MK’s mother objected to the placement.  “If you have changed your mind about where he should live”, said the judge, “raise this with the social worker and have a meeting to see if questions and worries can be resolved, and if they can’t, then there needs to be a separate application to the court”. 

MK’s mother was then given an opportunity to raise her concerns about vaccination. She said “the doctors mean well, but I don’t trust the vaccine”.  She expressed concern about the safety of vaccination and held the view that COVID is a man-made virus released by the manufacturers of vaccines. She was also concerned about recurrent infections, the prospect of future variants or different pandemic infections, which would result in the need for more and more vaccines.  And some people, she said, are vaccinated but still lose their lives to COVID.  She was concerned about side effects, especially the possibility of blood clots, particularly as MK spends long periods in a wheelchair.  “If he is vaccinated and becomes sick,” she said, “I will never forgive myself.  I ask the court to give my son safety.”

The judge explained – for the benefit of MK’s mother – that, as MK lacks capacity to make his own decision about vaccination,  his job was to make a “best interests” decision for him:

I have to take into account his own wishes and feelings, and so far I haven’t been able to identify any.  I have to take into account the views of people who care for him.  That includes the doctors and carers, and it includes you.  The other thing I’m going to take notice of is the official government advice on vaccination, which you can see on the website.” (DJ Mullins).

The court then moved to consider witness evidence from MK’s GP.

Witness evidence from MK’s GP

Counsel for the CCG (Elizabeth Fox [EF]) asked a series of questions of the GP, beginning by asking “are you able to provide an explanation as to whether MK is at increased risk of blood clots from the vaccine?”.

The GP responded that the vaccine associated with concerns about blood clotting was the AstraZeneca version and it was proposed that MK would receive Pfizer or Moderna. 

EF:      Why or how is it that he could still get COVID even if he’s vaccinated?

GP:     You’d need someone more well-trained in immunology than me, but vaccines can’t  

           100% guarantee that a person won’t get the illness the vaccine is designed to prevent.

EF:     So what is the benefit of having the vaccine?

GP:    Vaccination will prevent most people from contracting COVID, and for those who do 

          contract it, it will make the illness less severe. Most of the hospital admissions we are

          seeing at the moment are unvaccinated patients.

EF:     What is the benefit of vaccination specifically for MK?

GP:    I’m particularly worried for MK because he’s very vulnerable.  He’s vulnerable to 

          infection because he goes three times a week to hospital for dialysis, and he’s unable 

          to wear a mask.  If he were to contract COVID – and, unfortunately, he already has –  I 

          would be very worried about it. There’s a risk of morbidity.

EF:     He has already contracted COVID – is the risk reduced now if he were to contract 

          COVID again?

GP:    It’s difficult to say. We don’t know. We don’t know what variants of the virus we will 

          be dealing with next or how virulent they will be.

EF:     What guarantee is there that he won’t come to harm if he has the vaccine. Or put 

           another way, what are the risks to MK of getting the vaccine?

GP:    Most people who get vaccinated get a sore arm, which settles down quite quickly.  

          Some get flu-like symptoms, which tend to be short-lived.  AstraZeneca carries a small 

          risk of blood clots: we would never administer AstraZeneca to MK.

EF:     Practically, how will it be administered? In your surgery?

GP:    Provisionally the plan is to administer it in his home, as a home visit, on 13th January.

MK’s mother was then invited to ask questions of the GP.  The judge assisted her with this, by reformulating some of her questions.

Mother:  There was a professor of world vaccination on the internet who said that Moderna

                 does not give protection – does not have very good efficacy.

GP:           My understanding is that it’s effective and works well. I haven’t seen anything to 

                 contradict that.

Mother:   Like any mother, you want to protect your son.  I don’t want him to have it in the 

                  house with the care workers. If he has to have it, I want him to have it in the 

                  hospital when he goes for dialysis, with doctors and nurses, so he will be safe.  

                  I cannot be there myself.  I cannot bear to see him taking it.  If anything happened,

                  I could not live with myself.

Judge:      So, first, who will administer the vaccine?

GP:           A member of the vaccine team. They are trained professionals, trained to give that

                 vaccination.

Judge:     What is the plan for reassuring him?

GP:          He will be in his own home environment. We wanted to do it at home also to 

                 minimise his risk of further contact. If we take him into a surgery, he’d be in a

                 waiting room with other patients and at risk.

Judge:     He goes to hospital three days a week for dialysis. Could it be done at the same

                 time?

GP:           It would have been some time back, but it’s not possible at the moment.

Judge:      Knowing MK as you do, do you think it would be an advantage to him to have the 

                 vaccination away from home?

GP:           No.

Another member of the CCG, with practical experience of the vaccine team, was also in court and outlined the provisional plan.  

The proposal  was that a District Nurse from the vaccination team would visit MK at home and in the presence of a known carer (for comfort) administer the vaccine, carrying out such clinical observations as were appropriate for 15 minutes afterwards. The nurse would be one specialising in home services so “very well versed in dealing with people with limited mobility and other conditions”.

Turning back to MK’s mother, the judge asked, “So that’s the CCG’s provisional plan. Do you have further questions?

MK’s mother continued to express her concerns:

“I’m not convinced that vaccination works. I’m not a medical person, but I believe that this illness is in the whole world, and the disease is not going to stop coming, so how many vaccinations will be needed?  I have no faith in the care home. I don’t trust them.  After 15 minutes, leaving my son with them, his heart might stop, I don’t know, and they might not call an ambulance.  Every time I go there, they try to make it hell for me.  I get really emotional at what I’ve been through in the last two and a half years I have been abused by them”.

The judge tried to cut her off during this speech, and then said:

You asked how and by whom and where the vaccine was going to be given, if it is to be given.  It was reasonable for you to ask whether it could be given in hospital.  We’ve had answers, and if I’m right about the thing that worries you most, the vaccination wouldn’t be given by the care home staff but by a specialist district nurse who is skilled in doing this and can decide what needs to be done if there was a specific reaction and can give advice to care home staff.  And that advice has to be obeyed by care home staff, and if it reassures you, I can write that into the order.

MK’s mother expressed scepticism that care home staff would actually follow the nurse’s advice, and the judge said he would write into the order that the plan must be followed – checking with Shadia Ousta Doerfel (for the local authority) that this “wouldn’t cause problems with the care home, would it?”.  She confirmed that it would not, adding, “that’s what we would expect to happen anyway”.  The judge asked the GP, “does the care home call you if needed?” and the GP confirmed that they did, “very appropriately”, and paid tribute to the care rendered to MK by the staff in the home when he was ill, pointing out that they had been monitoring him hourly to ensure any deterioration would have been detected quickly.

As MK’s mother continued to ask questions of the GP along the lines of “Do you believe in the vaccine” and “Do you trust the vaccine?”, the judge rephrased these questions in a way that seemed designed to enable the GP to provide the information the mother was looking for.  (That’s part of the judicial role – helping out a litigant in person.)  “If MK himself was able to talk to you”, the judge said, “and he had some of the concerns his mother does, what advice would you give him.  Would you advise him to have it or not?”.  The GP responded by reiterating that COVID vaccinations were “generally very safe and effective”, that side effects are mostly “incredibly mild” and: “I would absolutely advise him to have it. He’s very high risk.

The mother expressed additional concerns at this point – about how it had happened that she and her son had caught COVID (she believed it was from a member of the care home staff); and about her son’s ability to communicate (“I don’t know how the doctors are saying he’s not communicative. He can’t speak, but he can express things”).   But these were not, as the judge pointed out, questions for the GP.

 Referring to the GP and other medical professionals, she said:  “I understand and respect their professional opinion, but I believe the same people are spreading the virus and making the vaccine, so it is terror in the world, and I have no confidence in the vaccine.  Other vaccines we took as children, they worked to help us.  This vaccination is very strange. There is divided opinion. I’m getting confused as a mother.  Especially when a son cannot speak for himself, cannot protect himself. He’s like a baby for me, always.

The lawyers (and judge) had no further questions for the GP, who was released with a comment from the judge that “MK is lucky to have you as his GP”.

Closing Submissions

Counsel for the applicant CCG said that the case was not complicated.  It involved a straightforward application of the best interests test in s. 4 of the Mental Capacity Act 2005.  The case law she considered relevant was SD v Royal Borough of Kensington and Chelsea [2021] EWCOP 14.   She read out §31 from that judgment to emphasise that: ““it is not the function of the Court of Protection to arbitrate medical controversy or to provide a forum for ventilating speculative theories. My task is to evaluate V’s situation in light of the authorised, peer-reviewed research and public health guidelines, and to set those in the context of the wider picture of V’s best interests.” It remained the position of the CCG that MK should be offered vaccination as soon as he is eligible to receive it after the current infection (i.e. 13th January).

Counsel for the LA supported the CCG’s application – adding (with reference to the mother’s claim that she and MK were infected with COVID by a member of the care home staff): “these are not proceedings about who gave COVID to whom and no reliance should be placed on any conjecture about that”.  Residence decisions would also be the subject of a separate decision on another day.  Finally, she also quoted from SD v Royal Borough of Kensington and Chelsea [2021] EWCOP 14: “Strongly held views by well-meaning and concerned family members should be taken into account but never permitted to prevail nor allowed to create avoidable delay. To do so would be to expose the vulnerable to the levels of risk I have identified, in the face of what remains an insidious and highly dangerous pandemic virus.“ (§26)

MK’s mother, invited to say “anything you haven’t already said” was clear that: “I want the safety and wellbeing of my son. I want my son to be well and safe, whatever medication he is given. I think I shared what was in my heart”.

Finally, Counsel for MK via the Official Solicitor pointed out that the judge would “normally be provided with wishes and feelings, but the position is that MK is unable to understand or express his wishes about vaccination” but said that “it would be in his best interests to receive both the covid-19 vaccinations and any subsequent booster recommended by the government or felt appropriate by his clinical team”.  She also quoted from SD v Royal Borough of Kensington and Chelsea [2021] EWCOP 14

“… respect for and promotion of P’s autonomy and an objective evaluation of P’s best interests will most effectively inform the ultimate decision. It is P’s voice that requires to be heard and which should never be conflated or confused with the voices of others, including family members however unimpeachable their motivations or however eloquently their own objections are advanced” (§33)

In this case, “you don’t hear MK’s voice. But you hear he has not objected to the flu vaccination.  With these jabs he did not object ‘in the moment’

Judgment

The judge expressed his gratitude to all the parties, especially the mother to whom, he said, he was “grateful for bringing our attention to the practicalities of what’s proposed”.

He reminded parties that he had previously (at the earlier hearing) expressed concern about the delay in bringing this case to court, and he reiterated what he’d said at the earlier hearing: both First Avenue House London and the regional hubs of the Court of Protection have arrangements in place for dealing with urgent matters such as vaccination and referring them on quickly.

It’s striking that the time it took for this case to come to court was so long that MK contracted COVID – which is of obvious concern to the court.  Happily,  his symptoms don’t seem to have been too serious.”

In reaching the decision, Judge Mullins pointed out he was required to consider, as part of  best interests decision-making:

  • the wishes and feelings of P where it is possible to ascertain them
  • the views of others involved in his care – his mother, carers, GP etc.
  • official government guidance 
  • MK’s individual circumstances.

The judge then summarised the situation, i.e. despite attempts to elicit MK’s own wishes and views about vaccination, he’d been unable to provide them.  “I fully accept he’s able to express pleasure (for example at seeing his mother) and I also note that he has not physically turned away or shown reluctance to vaccination for flu in the past.  If there were signs of resistance I’d take that into account – especially if asked to authorise restraint”.

In considering the relevant circumstances of the case the judge drew attention to the clinical advice given.  Both the written evidence from two doctors, and the oral evidence of the GP who participated in the hearing incorporated NHS Guidance.  “As the lawyers correctly submitted to me, it’s not the function of today’s hearing to go behind that advice and to question it.  The consensus of the professionals is that MK’s best interests lie in being vaccinated.”

The views of MK’s mother were, the judge said, “not always easy to identify precisely because there’s a general and understandable anxiety about COVID and about vaccination.”  

He continued.

“She was forthright and clear today.  At other times I see from the papers that she has been less sure.  When he was unwell, she said she wasn’t sure she’d made the right decision in objecting.  She says she is unhappy with the care provided. There has been a breakdown in trust.  I’m not sure to what extent that’s about COVID. She has attached too much weight to the possibility that a care home staff member might have been the means by which she and/or MK had contracted COVID.  She also overvalues the idea that she can protect MK by taking him home and isolating him. That’s not practical. He needs 24-hour care, and he goes out to hospital three times a week for dialysis – that makes him very vulnerable.  He’s also unable to wear a mask so is vulnerable that way.  MK’s mother played a useful role in considering the practical details of how the vaccination would be administered and where the lines of responsibility would be drawn.

We reached a position where it was agreed there will be a plan setting out the details of how the vaccination will be given and making clear that clinical advice is to be followed by the care home staff.  I think that would have happened anyway, but it doesn’t do any harm at all to have that in place.  He will have either Moderna or Pfizer on 13th January or as soon as possible afterwards. It will be given by the district nurse who is part of a specialist team, who is well-versed in working with patients with impairments.  At least one member of the care home staff will be present, and reassuring to MK, and he’ll be in a familiar environment – his home. Vaccination in hospital is not possible, and even if it were possible it would not be in his best interests.

MK’s mother has a number of underlying beliefs about the virus. That this is a man-made virus, which I think is a common belief, and that there’s a link between the creators of the virus and the producers of the vaccines – which is not a common belief.  Her views about vaccination are directly contrary to the national guidelines.   

Would the vaccine protect MK? Yes – we know now that people can get COVID more than once. We know he’s extremely vulnerable. The benefits outweigh any disadvantages.    It will protect MK from a range of adverse consequences . If he were to become more ill it would be very distressing and confusing for him – and hospital treatment would be extremely distressing for him.

Is it safe? There is no reason to think he’d be at increased risk of side effects.  The risk of blood clots is related to AstraZeneca and not on the vaccines proposed to be given.  Side effects are likely to be localised and short-lived.

It is my clear view that it is in MK’s best interest to have all the doses recommended by national guidance and by the treating team at the time.  There will be an order drawing up the plan for this and a practical road map.

DJ Mullins indicated that vaccination would take place on 13th January or as soon as possible afterward according to the plans outlined.

Observations

MK’s mother has adopted some controversial views about COVID-19 and vaccines, but the way in which she sought to incorporate her concerns- blood clotting for example – to the particular circumstances of her son was notable. She had given the matter considerable thought, as indeed she had when concluding that having him at home would limit contacts and hence possible further infection. Judge Mullins observed, however, that she gave undue weight to the possibility of protecting him at home,  given that he needs to go three times a week to the dialysis unit.

Before I retired from being a Consultant in Anaesthetics and Intensive Care, I was working in a city where the Coroner held quite a lot of brief Inquests. My colleagues and I were quite used to attending and giving evidence, which gave us insight into the fact that many unnatural deaths occur without anyone necessarily being at fault. But where death had occurred after a prolonged or difficult hospital stay, relatives often attended with the expectation that there would be an exhaustive inquiry into matters which the Coroner did not agree had any relevance to the death. They were therefore often disappointed. 

I felt that MK’s mother also expected a more wide-ranging enquiry, and sometimes struggled with the very specific nature of the question being considered in the hearing, having so much she wanted to get off her chest about MK’s living arrangements. 

Both this hearing and accounts of others from the Open Justice Court of Protection Project demonstrate that the Judges try very hard to support Litigants in Person through the proceedings in compliance with the Equal Treatment Bench Book: “The aim of the judge should be to ensure that the parties leave with the sense that they have been listened to and had a fair hearing – whatever the outcome” (§11).

I cannot know how MK’s mother felt after the hearing, but DJ Mullins took great care to support her. It can be very difficult for Litigants in Person to isolate a single issue from its history and broader context, and I think we should be able to do better in explaining to them – and indeed to inexperienced witnesses – what to expect from the Courts.

Angus Mackenzie is retired from an NHS Consultant job in Anaesthetics and Intensive Care. He now works part time for the Welsh Medical Examiner Service.  He tweets @anxiousmac


[1] Direct quotations are supplied by Celia Kitzinger who observed this hearing too.  They are as accurate as possible (based on contemporaneous note-taking) but since we are not allowed to audio-record hearings, they are unlikely to be word perfect.

Photo by Hakan Nural on Unsplash

Untenable and unsafe: A trial of living in the community breaks down

By Jenny Kitzinger, 18th January 2022

Mr G is a 64-year-old man who has been arguing for his right to live in the community since soon after entering residential care in early 2019. 

He is deemed not to have capacity to make a decision about where he lives, so this decision (along with other best interests decisions) has come before His Honour Judge Tindal in Worcester on numerous occasions (Case 13382192). 

The hearing I observed on 20th December 2021 was the latest (and perhaps last) in a series of hearings about his case: I’ve blogged about earlier hearings hereherehereherehere and here.

Mr G’s loss of capacity to make decisions for himself (in relation to his care and residence) is relatively recent. He previously had a highly successful career in senior management, but had struggled with alcohol and opiate abuse. He has vascular dementia, Korsakoff’s amnesic syndrome, and frontal lobe damage. He also has severe physical health challenges because of diabetes and he’s had a pancreatomy – which has left him entirely dependent on prescribed insulin and means that drinking alcohol is extremely risky for him.

Mr G is an articulate and determined individual who is vociferous in his rejection of “incarceration” in residential care and consistently demands respect for his “autonomy”. 

Various attempts have been made to enable to have his “liberty” with support from social and healthcare teams and from his partner, Miss F. This includes an earlier trial of living in the community in late 2019 (which failed after a few months), and the current trial that started in September 2021.

This latest hearing, however, drew an end to the most recent trial of living in the community. The judge ruled that it was in Mr G’s best interests to be returned into residential care, even though this was clearly against his will.

Hearing on 20th December 2021

The applicant in this case was Mr G (via his litigation friend, the Official Solicitor). The respondents were the local authority and the NHS Trust involved in providing professional services. 

Written evidence submitted to the court included updated statements from health and social services and an updated capacity assessment which confirmed that Mr G lacked capacity to conduct proceedings, and to make decisions in respect of care, residence and contact with his partner, Miss F.

Miss F was present via the remote platform for this hybrid hearing. (She had planned to come into the courtroom but Mr G was unwell so she had stayed at home to support a consultation with his GP).

Mr G was also present for most of the hearing, lying in bed behind Miss F. For the most part he declined to contribute formally to proceedings with the exception of admitting he had been drinking since leaving residential care and of asserting that he wished to remain living with Miss F.

The hearing consisted of two parts. The first part (which took up 3.5hrs of the hearing) addressed longstanding allegations that Miss F had engaged in financial and physical abuse against Mr G. I blogged about this here. The judge wound up this part of the hearing by concluding “I exonerate her from the allegations…I will proceed on this basis that none of the allegations against her have been substantiated”. 

The second part of the hearing was relatively straightforward and lasted just over an hour. 

Mr G’s social worker who’d been keeping a close eye on the situation and had had lengthy conversations with both Mr G and Miss F, confirmed his written statement which recorded that, in his opinion, it was no longer safe to leave Mr G in the community. 

Mr G had been drinking heavily, including spirits, and Miss F was not able to stop him. The social worker commented: 

He is a risk-taking person and it is part of his integrity to do what he wants to do” [Mr G has made clear he believes that] “nobody has the right to tell him when to have a drink, neither the judge, not the local authority. This is consistent with his wish to be fully independent and his view of himself as an intelligent person who knows exactly what is best for him.”

Miss F, for her part, confirmed that she had read the social worker’s report which she characterised as “frank and in depth”, adding “he is being restrained and considered in what he says”. In a poignant statement to the court she said:

I’ve been massively disappointed with what has happened since 21stOctober [2021] [the date at which the injunction against Miss F was lifted and she became central to supporting Mr G living in the community].…

He and I were very positive leaving the hearing – there was so much promise and optimism.

He didn’t come home over that weekend. It was a trial period, wasn’t it. I found out on the Monday evening that he’d been drinking spirits during the day. 

I’m in a difficult position because I am present [here with him here]… It is a position of both power and treachery that I’ve been put in, but I don’t think there’s anything to be gained by covering up. After making those undertakings [not to drink] to you [the judge], to me, to himself on Thursday and knowing how close he’d come [to going back into care immediately] I couldn’t believe he was drinking by the Monday.”

Attempts to tease out why he was drinking had left Miss F with the impression that, quite apart from liking the taste and effect of alcohol, it was also part of “thumbing his nose at authority”.

Miss F’s previous alienation from the professionals (so evident in the October hearing) seemed to have been replaced with more of a sense of common alliance with them (albeit with deep regret). At one point, for example, she referred to the social worker’s “astute” observation about how Mr G’s behaviour changes, adding “he wears people down” (before carefully noting that she recognised that the social worker had not said that – but that was part of her experience).

The change in attitude was particularly noticeable in how she spoke about the expert who has assessed Mr G’s capacity in 2019, and again, for this 2021 hearing. Miss F had previously been very critical of this particular expert, resisting the court’s request that he should carry out an updated capacity assessment on the grounds that his 2019 report was “full of errors” and “I have grave concerns of his impartiality’” (speaking at October 2021 hearing). However, this time she read his latest report as “illuminating”. She commented, for example, that the report helped to highlight that Mr G’s “premorbid high-level intelligence and eloquence masks a lot of things”.

The judge’s decision: “everything has been tried that can be tried”

After hearing all the evidence, HHJ Tindal took care to take responsibility for the decision. I was struck, for example, by the following exchange

Judge: “Miss F. I am NOT going to ask you whether you could look after him and keep him safe. You can tell me what you want to tell me, but it seems to me that I am in a position to grasp the nettle without you having to be in that position. 

Miss F: He is seeking it [alcohol] every day. I am not abandoning him. I am not going to do that. But he can’t have this sword of Damocles hanging over him. I’m not a psychiatrist. He’s got a phenomenal memory, of course he can remember what he’s promised – some of it is dementia, some of it is addiction….[But] I believe the head can rule the heart. But I can see him going downhill. But I am not going to abandon him. I would be happy to surrender him, not have a relationship, to have him live in the community. But I don’t believe he can live on his own. He pushes boundaries too far.”

The judge then asked Miss F to invite Mr G to return to the room (he had walked out a little earlier). The message came back from Mr G that he would not come back and to “F off’. (His demeanour during this hearing was in stark contrast to how he had comported himself at earlier hearings where I’d noted the pains he took to present himself as courteous, reasonable and respectful of the court process).

With clear regret, HHJ Tindal then summed up the situation: “I’ve always tried to strike a balance between autonomy on the one hand and protection on the other” he said, “but I find myself driven to admit defeat”.

Highlighting the huge risks that drinking posed to Mr G’s life given his specific health conditions, the balance, he said, now came down in favour of protection. 

“In fairness to every single professional, everything has been tried that can be tried and Mr G is not safe to live in the community…With sadness and a great degree of thanks to the huge patience shown by the professionals and Miss F in this case, [I have to admit] that my efforts have not worked. It is not in his best interests to remain in the community. It is in his best interests to return to [care home]…The current situation is untenable. It is not safe. It must now end.”

He approved a draft order for Mr G to be conveyed back to the care home as soon as possible. 

Reflections

So, Mr G will return to the safety of residential care, where he will no doubt continue to rage against his incarceration, but there will be a suitable infrastructure to help him manage his precarious health condition. The question one is left with, of course, is, as Munby J famously said: “What good is making someone safer if it merely makes them miserable?” (§120 in Local Authority X v MM & Anor (No. 1) (2007). What weight should be given to autonomy versus protection? This is a huge challenge for the courts and one which any of us may face when thinking about our own future, or the future of family members.

Regardless of the outcome, however, I am confident that no effort was spared by the judge in attempting to ensure that Mr G was not deprived of his liberty without due process. It is also clear that considerable energy was put into trying to create the infrastructure to allow him to live ‘independently’, in the way he wanted. 

I felt for the district nurses and care workers involved and was also impressed by the measured evidence from Mr G’s social worker which reflected a clear commitment to his client and thoughtful attempts to navigate the ‘volatile relationship’ Mr G had with Miss F.

The investment from the health, social care and legal services (and, of course, from Miss F) is all the more striking in midst of a pandemic – and I suspect Mr G accessed far more resources than some other people with comparable incapacities, and equally strong wishes and feelings, are able to mobilise.

The series of hearings I attended about Mr G demonstrates the complexity of trying to support people who lack capacity to make a decision but have strong wishes, and/or a strong sense that this decision should belong to them – that they should properly have the right to make it themselves.

Mr G’s tragedy (given that  he is subject to the Court’s balancing of autonomy and protection) is that he is passionate about his own liberty and ‘independence’ but appears to lack insight into, or the ability to control, the behaviours which threaten his freedom.

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

Photo by Joshua Hoehne on Unsplash

Abuse and coercive control? A fact-finding hearing and exoneration

By Jenny Kitzinger, 17th January 2022

The hearing I observed on 20th December 2021 (Case 13382192) concerned Mr G, a 64-year-old man who has vascular dementia, Korsakoff Syndrome, and frontal lobe damage. He also has problems with diabetes and alcohol use, and previously had an opiate addiction, from which he has since recovered.

The hearing was to determine where he should live. 

At the time of this hearing, Mr G was living partly in his own flat and partly with his partner, Miss F. The two had originally met and moved in together in 2016 but their relationship had broken down and, in January 2020, after making serious allegations against her, he had moved into a care home and broken off all contact with her. However, he had re-established a connection with Miss F during a trial of returning to live in the community that had started in September 2021. He had also withdrawn all his allegations.

The focus, most of the time in this hearing, was on the allegations against Miss F. They included allegations of physical and financial abuse and coercive control, and an allegation that she’d deliberately administered an insulin overdose when she visited him in hospital. There were also reports of her being obstructive and hostile to healthcare professionals trying to support Mr G.

My interest in this hearing was two-pronged. 

On the one hand, I have a longstanding interest in how to investigate the abuse that happens ‘behind closed doors’. In the 1980s I was involved in setting up one of the first UK refuges for girls needing to escape sexual abuse at home and I wrote a book about how child sexual abuse is reported and understood: “Framing Abuse”. There is, of course, also extensive research showing that abuse by carers (paid or unpaid) is a serious, and often hidden, problem (currently the subject of a government review).

On the other hand, I am concerned with how family members, perhaps struggling to care as best they can with inadequate support, may sometimes be wrongly, inappropriately or precipitously characterised as neglectful, or suspected of being abusive, with a move to institutional care seen then as an obviously better option. 

In addition I’m interested in how conflict between family members and social care staff or health care staff may be framed by professionals and recorded in social and healthcare records. In my experience, family members who have views about a person’s treatment which strongly differ from those of healthcare professionals may sometimes be framed as unreasonable, aggressive or not having their relative’s best interests at heart. 

As the sister of an individual with profound neurological injuries, and through my links with other families in this situation, I know how relatives can feel subject to negative stereotyping. In my own sister’s medical notes, I discovered I had been labelled: ’difficult’ and ‘vociferous’ and criticised for being ‘obsessed’ with the Mental Capacity Act and the Court of Protection and for ‘writing letters+++ to consultant’.

I was therefore fascinated to see how Miss F’s conflict with the healthcare professionals might be addressed in this hearing and the way in which the specific allegations around her treatment of Mr G would be investigated. 

I also felt very invested in this case as I’d been following the ins and outs of proceedings about Mr G for almost a year and a half. 

Outline of the hearing

The central question (where Mr G should live) had been considered at over half a dozen previous hearings because Mr G has been and remains adamant in rejecting residential care. 

At various times over the protracted proceedings there seemed some hope that, with the right support in place (including from Miss F), he might be able to live long term ‘in the community’. (See my previous blogs herehereherehere and here)

The December 2021 hearing reported in this blog was basically a ‘fact finding exercise’ to address the concerns about Miss F, alongside reviewing how his trial placement back in the community had gone, prior to making a final decision about residence and care. 

The hearing was before HHJ Tindal at Worcester Combined Court and was a hybrid hearing. 

Three barristers were present: one representing Mr G via the Official Solicitor, another representing the NHS Trust and a third representing the Local Authority.

Miss F attended remotely as a Litigant in Person. She had intended to be in the courtroom in person but because Mr G was unwell, she had to connect from home.

Mr G was present for most of the hearing in so far as he was visible lying in bed behind Miss F. He made occasional interjections, and on a few occasions got up and walked out of the room.  By and large,  he declined to contribute formally to proceedings apart from making one statement: “My position is simply that I want to live with [Miss F].  I want to share my life with her”.

Miss F had been presented with a “schedule of allegations” and at the start of the hearing these were read out to her by the judge.

Evidence in support of the allegations was then presented (mainly by the barrister representing the Local Authority, Carol Knotts) and Miss F was invited to respond and was questioned about them. 

Legal Context 

The Court of Protection is not a criminal court so although it may make findings about behaviours which can include criminal behaviours (such as physical abuse or coercive control), the standard of proof is on the “balance of probabilities”, rather than “beyond all reasonable doubt”. There is no criminal conviction for the person against whom such findings have been made, but CoP judges can use such findings to protect people who lack capacity to make their own decisions from abusive relationships. They might, for example, issue an injunction to prevent contact with the protected party. 

Two recent examples are: 

In both cases steps were taken to prevent contact and also to protect P from entering into a forced or coerced marriage or civil partnership with their abuser.

In the cases cited above, the case was explicitly focused on the abuse (and the application to court was made for that reason, by the County Council in the first example, and by BU’s daughter in the second). 

However, questions about the behaviour of a partner (or other family member) may emerge as part of any hearing.  

For example another blog published by the Open Justice Court of Protection Project  describes a case where the local authority decided to remove an eighteen year-old from her family and place her in residential care in spite of family protests. This young woman (P) has profound learning disability and cerebral palsy; the local authority’s concerns about her welfare at home included alleged:

“…. exposure to physical aggression (from the mother’s partner towards the mother), missed medical and dental appointments, dental decay, the mother (Ms X) not providing P with prescribed medications […], not following advice about the need for P to wear her back brace, allegations that she was putting P at risk of choking because she won’t use a blender to puree food, and in other ways “wilfully ignoring” the advice of professionals, and behaving “aggressively” towards care staff. “

Background to Miss F and Mr G’s relationship and an overview of allegations

The allegations presented in court against Miss F gave a clear and compelling picture of the concerns which reflected and/or informed social and healthcare professionals’ approach to Mr G’s best interests.

It seems that Miss F met Mr G in July of 2016 and he had moved in with her by the following month (August 2016). He was in difficult circumstances, and out of control of his own life (he may have been homeless at this point). However, he was about to turn 60, and became eligible for his pension payout very soon after moving in with her. As he’d previously had a high-flying career in finance, this was a very large pension and, with Miss F’s help in tracing his assets, Mr G was also able to locate and access an overseas account he had previously set up. 

In August 2018, Mr G started to make allegations against Miss F to the professionals involved in supporting him – and he repeated and expanded upon them over the following months. 

He accused Miss F of taking £40,000 from him and trying to control his finances. On top of this, he accused her of coercive control of his medication (he was addicted to opiates). A district nurses recorded his statement that Miss F would “give him an extra pill if he was good or well behaved”. 

After a series of hospital admissions Mr G also made allegations of physical abuse and, in January 2020, he opted to go into residential care “as a place of safety at his own wish because he felt threatened and harassed by Miss F. And he has since then, until recently, said that he doesn’t want to have any contact with her.” (Testimony from Mr G’s social worker from hearing 21st Sept 2021) 

It was not only the accusations from Mr G himself that alarmed social work and healthcare professionals. Professionals reported overhearing interactions with Mr G which caused concern e.g. an incident when she was heard to “scream and shout at him” after a phone call (where the phone was not disconnected after the call) and another where a GP’s receptionist was alarmed by the way in which Miss F spoke to Mr G apparently putting pressure on him to sign a consent form.

Miss F’s interactions with the professionals themselves also raised red flags. There were reports of her trying to gain access to his medical records, for example, verbal aggression, confrontational behaviours and staff feeling she was obstructing them from doing their job. 

There was also, of course, the incident when Miss F gave Mr G the alleged ‘overdose’ of insulin. He was in hospital at the time and his diabetes medication was being determined by the medical team there. When Miss F became concerned about Mr G’s blood sugar levels and was unable to persuade the hospital to provide him with more insulin (over a weekend). She went ahead and gave him insulin herself, informing the medical team on the Monday. They called the police – she was arrested and bailed pending investigation (but never charged).

During this December hearing, additional evidence presented to the court included the fact that Miss F had been arrested for shoplifting just after she met Mr G: this was used to suggest she must have been short of money, hence raising concerns about her involvement with him more broadly.

An examination of Mr G’s finances also revealed a series of large cheques signed by Mr G, but where the payee was added in Miss F’s handwriting (although the total amount of potentially ‘suspect’ transactions came to only 13K, not the 40K that Mr G had originally accused her of taking).

Mr G withdraws his allegations

The original source of concern, and the strongest evidence for most of the allegations against Miss F, had originally been Mr G himself. 

However, two months before this hearing, Mr G had withdrawn all his allegations against Miss F. (This was when he was back living in the community and his long-term prospects for staying there were under consideration – and Miss F was offering her support.) 

This left the relevant professionals uncertain about how to understand his position. As his social worker carefully commented, he could either conclude that Mr G’s allegations against Miss F “have all not been true and they’ve been a diversion of his difficulties themselves”; or he could conclude “that there has been coercive control and Mr G’s decision to move back with Miss F is caused by his inability to recall the incidents which caused serious distress in the past”.

It became important to have a fact-finding exercise in court about the allegations against Miss F – both for her own sake (she was keen to have the accusations scrutinised) and for future planning about Mr G’s care.

Cross-examining Miss F

The question of legal representation

There seems to have been some confusion about whether or not Miss F might be eligible for legal aid for the December hearing, and she’d been unable to access independent legal advice and representation. Early on in the hearing she commented that “In the absence of advocacy I was intending on coming and refusing to answer any of these allegations against me because it is inequitable that I’m the only person who’s not represented”. HHJ Tindal responded that These allegations have been hanging over your head for over 2 years in some case 3 years” and he was clear that “If I take the view that I am minded to make serious findings against you …I could adjourn to enable you to get legal advice

The focus on specific allegations

There were 13 allegations against Miss F, 8 of which focussed on her treatment of Mr G and 5 of which concerned her interactions with social and healthcare professionals. Clear direction was given by the judge about the focus of cross examination. It should, he said, focus on the allegations about her conduct towards Mr G rather than the allegations about her behaviour towards staff. This was “Not because it’s not important how Miss F speaks to professionals but that it is clear Miss F speaks her mind and professionals on occasion find that quite challenging.” 

The style of cross questioning

The style of questioning of Miss F by the barrister for the Local Authority was much more confrontational than anything I’d seen before in the court (at least in relation to a lay person). I also noted that Miss F was rather good at holding her own.

The following exchange, for example, about the insulin incident is typical of the type of interaction during the cross-questioning.

Carol Knotts: Let’s deal with the issue of the insulin, because you were

                        arrested by the police, weren’t you?

Miss F:           Yes.

Carol Knotts: You admitted to one of the nurses that you had given Mr G

                        insulin.

Miss F:           I didn’t ‘admit’ it, I volunteered that insulin had been supplied

                        to Mr G – because I didn’t want the nurses to think doing

                        nothing had lowered his blood sugar. Only an idiot would leave

                        a Type 1 diabetic’s blood sugars running at 21.5 […]

Carol Knotts: You didn’t inform the staff immediately after it had happened?

Miss F:            No. They’d told me they were not going to give him anything 

                        and there wasn’t a prescribing physician until the next day. 

                        They were reckless in not giving him insulin

Carol Knotts: What you did put him at risk didn’t it?

Miss F:            Rubbish. It did not.

There was another sharp exchange concerning the time Miss F had shoplifted.

Carol Knotts:  At the time he moved in, you were clearly short of money.

Miss F:            No. I had 5K savings ready to install a new kitchen.

Carol Knotts: The police record (on page 57) shows that on 8th September

                        2016 you were arrested for an offence of shoplifting (which 

                        occurred on the 15th August.) 

Miss F:           You are assuming that was because of I was short of money.

Carol Knotts: You pleaded guilty.

Miss F:           This matter has been dealt with. You are wrong in your

                        assumption that I couldn’t afford to pay for it.

Carol Knotts: Why take it?

Miss F:            I refuse to answer your question. You may infer. 

Miss F’s evidence

When Miss F did offer explanations and answer questions, a very different picture emerged from the picture presented by the Local Authority.

Regarding ‘financial abuse’, for example, a great deal of time was spent going through copies of a series of cheques – all of which benefitted Miss F, and where the payee was in her handwriting, although the signature was Mr G’s. Most of the cheques appeared to be for Miss F’s mortgage. Miss F argued that this was simply a reflection of normal exchanges between a couple, based on an informal agreement between them, complicated by Mr G’s illnesses. Mr G had moved into Miss F’s home and she’d given up her job to care for him and he’d agreed to contribute financially to their shared living arrangements. Then there was a “a terribly chaotic period” after Mr G had had a stroke, “with lots of mortgage payments unpaid that he’d previously agreed to make”. Miss F had been served with an eviction date in early 2019 after making no mortgage payments through 2018 she said. It was at this point that one of the most problematic cheques was signed, when a friend of Miss F’s went into the hospital and returned with a cheque signed by Mr G while he was very ill indeed (I think the implication was that he was very unlikely to have had the capacity to make a financial decision regarding signing the check at this point). 

Regarding the alleged abusive behaviour toward Mr G, Miss F was clear that all the behaviour described was motivated by her concern for him. Her expressions of anger at Mr G were when she was at the end of her tether with his self-sabotaging behaviour or distressed about his state. The incident when she threw a pan (and it broke a window) in her home was not an attempt to harm him (“I didn’t aim it at him. I’ve never injured him in any way”). She countered that he had injured her in the past: “During summer of 2018 – I had to hide in the lavatory; he’d cut my hands where he tried to wrest the car keys out of my hand”. (This was one point at which Mr G interjected, protesting that this allegation against him was ‘Absolute rubbish!’)

Incursions such as trying to gain access to his medical records were not actions taken against his will, but reflected her support role, and the need to be proactive when he was in no fit state to take the initiative. 

Behaviour presented as evidence of harassment and attempts at coercive control by the Local Authority were similarly seen in a very different light by Miss F. Contacting Mr G in breach of bail conditions (following the insulin incident) was motivated by the knowledge that Mr G needed her – his mother had died and he had absolutely no support in organising the funeral, so “I did it in support of him”. Repeated phone calls, that he might see as harassing, were driven by her desire to ensure he was okay.

Miss Knotts: On the 29thJanuary, he’s complaining that you are harassing

                       him, He showed [a healthcare professional] 43 missed calls

                       to him from you.

Miss F:           I’d make 103 calls if I couldn’t have access to him. I was

                       trying to find out how he was and where he was.

Regarding allegations of abusive behaviour toward professionals, Miss F was equally confident in refuting them. So called aggression’ at professionals was justified frustration when they had done their jobs poorly (such as the GP who had, she said, ‘recklessly’ prescribed several weeks’ worth of opiates, breaching the arrangement whereby Mr G’s access was meant to be strictly controlled).

In relation to Mr G’s own allegation against her she argued that Mr G confabulated at times and deliberately deflected his own responsibility or was kicking against her efforts to support him or to control his addiction:

“What you are observing is a consistent drug seeking behaviour…And I am the whipping boy for this”. 

Mr G, she argued, invented his own reality and there were times when “Mr G would say black was white if he thought it was of benefit to him”. In relation to the suggestion that she used medication to control Mr G, she reflected that at one point Mr G had told her he could “get me into a lot of trouble” and that he was sometimes angry with her because she was the only thing that stood between him and his addiction. His illness could make him manipulative, and indeed, led him to want to resist or punish her.

Miss F concluded: “My conscience is clear, my memory is clear, I’ve never done anything to cause Mr G harm, physically or psychologically, or pharmaceutically.

She retained her composure throughout what must have been difficult cross-questioning, and became a little weepy only towards the end of the hearing, commenting:

 “I apologise for my loss of composure (weeping) I was told by Mr G: ‘I’ll tell you about tomorrow. You are the one in the dock’…I reiterate I’ve never done anything…but try to promote his health and wellbeing and restore him to his good health that had been lost and indeed his standing in the community.”

The judge’s conclusion

The barrister for the Local Authority made a closing statement – reiterating key evidence against Miss F and characterising some of the explanations offered by her as “unsatisfactory” and stating ”It is obvious we are not getting the full story”.

The judge then rounded off this part of the fact finding by saying he was grateful to the local authority for preparing the bundle of evidence and the schedule of allegations. He acknowledged that the Local Authority had quite properly taken great care in relation to these allegations and to ensure safeguarding.

He then highlighted that this had been the first opportunity Miss F had had to respond to the allegations against her and stated that:

 “I found her evidence, detailed, compelling and honest… In my judgment, whilst there are findings to be made, they are relatively modest and moderate findings, unlikely to have any long-term bearing on my decision in the case”

The judge said he could entirely understand the Local Authority’s concern that Miss F had pleaded guilty to shoplifting just before Mr G moved in with her. He was, however, satisfied that it was not indicative of her financial difficulties at the time. He accepted that the arrangement for Mr G to pay Miss F’s mortgage was an agreement that had been made between them as a couple. Although some of the cheques were concerning, especially those signed by him when he was very ill, “this was not a case of financial abuse”.

In relation to the overdose of insulin, HHJ Tindal accepted that it had been done with good intent rather than with the aim of harming Mr G and noted that “It could have caused significant harm to Mr G – but all the evidence I have seen is that it brought down his blood levels to a safer level”.

In relation to allegations of abusive behaviour he accepted Miss F’s account of the pan-throwing incident and “I am satisfied that at times when professionals have heard Miss F expressing her frustration and anger at Mr G that is a natural human reaction of someone dedicated to caring for someone not easy to care for”. 

Regarding “aggressive” behaviour towards professionals HHJ Tindal noted that Miss F has “consistently been very blunt and straightforward to the point of disrespectful to some of the professionals”. Miss F, he went on to say, “is not someone who respects a professional because they are a professional. As a consequence, more than one professional has been at the receiving end of Miss F’s frank views. That is not a safeguarding issue – it reflects that Miss F felt she had to make clear her concerns”. 

HHJ Tindal’s noted that once the narrative had been established in relation to Miss F being “the problem’ (a narrative established by Mr G), “that is a narrative that the professionals took on board.” He observed that: 

“I am satisfied that Mr G has complained about Miss F to professionals which reflected his resentment at the time towards Miss F for controlling his life… Whenever Mr G doesn’t like not just Miss F but also professionals seeking to restrict his freedoms, he complains about all of them”

He concluded: 

”I exonerate Miss F from the allegations that she has faced and will proceed on this basis that none of the allegations against her have been substantiated.”

Reflections

I found the ‘fact finding’ process followed for this case detailed and ultimately reassuring. 

On the one hand the Court systematically addressed concerns about Miss F and additional evidence was sought out for the hearing (such as the investigation into the cheques). It was clearly important to seek evidence regardless of Mr G’s withdrawal of his allegations against her and to cross-question Miss F robustly. Such processes are key to protecting people from coercive control in particular. 

On the other hand the Court process ensured that Miss F knew the allegations against her and could respond to them. The judge also clearly acknowledged how professional narratives might form a bias against family carers who are “blunt and straightforward”.

The fact-finding process meant that, going forward, best interests decisions could be made with a clearer understanding of Miss F’s behaviour towards Mr G. It was also important in light of the fact that both have talked in court about plans to marry (and both have capacity to marry).

The fact-finding process took the first 3.5 hours of this court hearing. The remaining time focussed on whether or not Mr G should be returned to the care home. This decision did not take very long. My next blog will explain what happened, and what conclusion was reached.

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

Photo by Wolfgang Hasselmann on Unsplash

The politics of the pandemic in the Court of Protection

By Celia Kitzinger, Claire Martin and Daniel Clark, 14 January 2022

An autistic learning-disabled man in his 30s has not been vaccinated against coronavirus (COVID-19) because his sister does not agree that vaccination is in his best interests.  

The Clinical Commissioning Group responsible for his care has made an application to court for an order that vaccination is in his best interests and should be administered as soon as possible.  The application is supported by the Official Solicitor (on behalf of the protected party) and by his father. It is opposed by his sister.

This was the issue at the heart of the all-day hearing we observed before Deputy Circuit Judge Rogers in Nottingham (Case no.13816452 on 29th November 2021).

Introduction by Celia Kitzinger

The backdrop to this hearing is a global pandemic with profound economic, social and political impacts.  

We’ve seen draconian measures to contain the virus – lockdowns severely limiting freedom of movement, compulsory mask-wearing, restrictions on contact with loved ones – and a desperately overstretched health service.  

The political motivations behind lockdown measures, their underlying legality, and their impact on parliamentary democracy have all been challenged (e.g. “Was lockdown lawful?” ”Is lockdown 2 lawful”) and have led to huge protests internationally.

Both the evidence base for masks, and questions about the safety and efficacy of a mass vaccination programme, have been at the centre of public protests and demonstrations, some directly targeting vaccine clinics

Fears about government infringement of fundamental freedoms via compulsory vaccinations and vaccine passports has also fuelled public unrest internationally. Critics point to the weaponizing of fear to coerce population-wide vaccination and to the use of coercive psychological power to pit those who comply with mask-wearing against those who do not, and the vaccinated against the unvaccinated. “Propaganda and the manipulation of the masses has been a key tenet in totalitarian regimes”, says one critic, pointing to the “segregation and persecution” now meted out to the unvaccinated. Others make comparisons with Nazi Germany and claim we are headed at break-neck speed into a  “global pseudo-medicalized police state” fuelled by the “demonization of the unvaxxed”.

In the UK, public trust in the government rose at the beginning of the lockdown imposed in March 2020 but has declined ever sinceattributed to a series of government failings: its numerous last-minute U-turns, granting contracts for PPE to personal contacts who’ve failed to deliver, and its own ministers and their advisers breaking the rules. 

The pandemic, and measures attempting to contain it, have exposed and exacerbated social divisions and inequalities.  “The necessary restrictions of freedom during an epidemic may be strategically exploited by governments to reinforce power”, say academics who’ve studied plagues of the past (the Black Death, the Spanish flu, the great cholera outbreak in Paris) – all of which, they say, were “incubators of social unrest”.  

The courts are inescapably enmeshed in the socio-political issues of the day – and this includes the politics of COVID-19.

There are statutory prohibitions on salaried judges undertaking any kind of political activity and detailed guidance for judges that they should “avoid any appearance of political ties”.  Judges are warned of the risks of taking part publicly in “political or controversial discussion”, “public debate”, “public protests and demonstrations” or other conduct that might risk undermining public perception of the impartiality of the judiciary.  Impartiality means that the judge’s personal, political and ethical views are subordinated to the law which he or she must administer (Guide to Judicial Conduct).

But impartial administration of the law is always already to take a side – and it’s the “wrong” side for those who oppose the law, challenge government rules and policies, and want to change them. This applies to those who dissent from mainstream views about the vaccine as to any other dissenters, and it applies across a wide range of issues addressed by the court.

It’s clear, for example, that decisions about sexual behaviour at the heart of several recent Court of Protection cases are likewise inescapably enmeshed in wider social, political, and ethical debate: the hearing we blogged as Is it lawful for C’s carers to support him in accessing a sex worker? evoked wide-ranging public discussion about the oppression of women represented by the sex industry, and prostitution as a form of modern slavery.

The remit of the court and existing case law.  

Despite an enduring myth that “next of kin” are decision-makers for their incapacitated loved ones, it is rarely the case (in England and Wales) that family members can lawfully make serious medical treatment decisions, including vaccination decisions, on behalf of other adults. 

 In SD v RB Kensington and Chelsea [2021] EWCOP 14Hayden J held that: “…strongly held views by well-meaning and concerned family members should be taken into account but never permitted to prevail nor allowed to create avoidable delay. To do so would be to expose the vulnerable to the levels of risk I have identified, in the face of what remains an insidious and highly dangerous pandemic virus” (§ 26)

Decisions about vaccination for adults unable to consent to it are usually made in their best interest by the person with overall responsibility for the person’s health care.  Very often this means (for people living in care homes) their GP – who should consult with “anyone engaged in caring for the person or interested in his welfare” (4(7)(b) Mental Capacity Act 2005). 

When there is disagreement between professionals, between family members, or between professionals and family members about whether or not vaccination is in the protected party’s best interests (and where this cannot be resolved after second opinions, mediation attempts etc), then the matter should be quickly referred to the Court of Protection.

For the Court of Protection, the ’facts’ about COVID-19 and vaccination are pre-determined as in line with government policy, the NHS England COVID-19 Vaccination Programme, the Joint Committee on Vaccination and Immunisation (JCVI) and mainstream scientific research. 

 In SD v RB Kensington and Chelsea [2021] EWCOP 14, Hayden J held that: “… it is not the function of the Court of Protection to arbitrate medical controversy or to provide a forum for ventilating speculative theories. My task is to evaluate V’s situation in light of the authorised, peer-reviewed research and public health guidelines, and to set those in the context of the wider picture of V’s best interests.“(§ 31)

This means that little weight is given to “alternative” perspectives from family members (or others) who oppose vaccination of a protected party on the basis of challenges to the “authorised, peer-reviewed research and public health guidelines”.  Non-mainstream medical viewpoints from family members (or – indeed – from professionals) about COVID-19 are, according to this stipulation, simply disregarded by the Court.

Reliance on mainstream science means that, in practice, the Court overwhelmingly finds in favour of vaccination being in the protected party’s best interests, as illustrated by these extracts from judgments.

In stark terms the balance Mrs E, aged 80, must confront is between a real risk to her life and the unidentified possibility of an adverse reaction to the virus. This risk matrix is not, to my mind, a delicately balanced one. It does not involve weighing a small risk against a very serious consequence. On the contrary, there is for Mrs E and many in her circumstances a real and significant risk to her health and safety were she not to have the vaccine administered to her. […] By virtue of her vulnerabilities, the prospects for her if she contracts the virus are not propitious; it is a risk of death, and it is required to be confronted as such. The vaccination reduces that risk dramatically and I have no hesitation in concluding that it is in her best interests to receive it. (Hayden J , §17 & 19, E v LB Hammersmith and Fulham [2021] EWCOP 7,

I find that the risk to V’s life and health, if she were not to have the vaccine, would be unacceptably high and that it is in her best interests to receive it. In cases such as this, there is a strong draw towards vaccination as likely to be in the best interests of a protected party (P).” (Hayden J, §33 in SD v RB Kensington and Chelsea [2021] EWCOP 14)

This mainstream science must, however, be considered in the wider context of the protected party’s own past and present values, wishes, feelings and beliefs (as mandated by s. 4(6) Mental Capacity Act 2005).

P’s values, wishes, feelings and beliefs

As Hayden J said (in the context of a judgment approving vaccination, counter to the position of the family,[I] it cannot be presumed that vaccination is inevitably in a protected party’s best interests:

What it is important to emphasise here, as in so many areas of the work of the Court of Protection, is that respect for and promotion of P’s autonomy and an objective evaluation of P’s best interests will most effectively inform the ultimate decision. It is P’s voice that requires to be heard and which should never be conflated or confused with the voices of others, including family members however unimpeachable their motivations or however eloquently their own objections are advanced.” (Hayden J, §33 in SD v RB Kensington and Chelsea [2021] EWCOP 14)

And in another judgment, this time finding that vaccination was not in the protected party’s best interests, Hayden J said: “A determination of ‘best interests’ in this context … [is] not to be confined to the epidemiological; it requires evaluating welfare in the broader sense” (§36, Re SS [2021] EWCOP 31)

The case in which Hayden J made this comment was one in which the protected party herself (as opposed to her family members) held strong views about vaccination: It seems unlikely she would have wanted [vaccination] whilst capacitous and certainly does not want [vaccination] at this point”. (§ 32 Re SS [2021] EWCOP 31.).

Cases in which both the past and present wishes of the protected party are not to be vaccinated are fairly rare in my experience. This case was specifically assigned to a Tier 3 judge (the highest level in the Court of Protection) because it represented “an opportunity to evaluate strongly and consistently expressed views by P relating to vaccination and the weight they should be given, in the broader landscape of the insidious risk arising from the Covid-19 public health crisis” (§ 35).

The case concerned an 86-year-old woman (SS) with dementia living in a care home, who was refusing COVID-19 vaccination.  It was accepted by all parties that she lacked capacity to do so.

Her refusal of vaccination was in the context of increasing resistance to medical interventions of any kind.  The judgment records that SS had kept a newspaper cutting of an article she read as arguing that medicine “did more harm than good”.  She would “brandish [the newspaper article] with characteristic forcefulness, at anybody who sought to afford her medical care of any kind” and has been “almost entirely non-compliant with any attempted intervention”: she has refused blood pressure medication, and application of cream for a rash on her leg.

Specifically in relation to vaccination, her medical records going back to 1997 show no record of SS receiving any vaccination of any kind at all.

Even more strikingly there is an unambiguous note that SS declined both seasonal influenza and pneumococcal vaccines when offered them by the surgery. The first of these refusals is recorded in 2002 with entries identified in 2010, 2012 and 2014. Thus, there is a clear and consistent pattern of behaviour which predates SS’s diagnosis of dementia by a significant period.” (§20 Re SS [2021] EWCOP 31)

In court, Hayden J explained to the staff giving evidence that he was “trying to balance risk of death against trying to protect her dignity, autonomy, who she is, her pride” (quoted in blog post).  In the end he decided: “though much of [SS’s] cognitive function may have gone, her autonomy – and her own sense of it – not merely continues but flourishes, and she guards it carefully. Ultimately in my judgment, it is that which requires to be respected and is ultimately determinative of this issue” (quoted in blog post).

In the published judgment,  Hayden J concluded:

“….   there can be no doubt that SS lacks the capacity to take a decision on the question of vaccination. Nobody has sought to argue to the contrary. The issue for the court therefore is one of determining what is in SS’s best interests. Having regard to the available evidence I consider that there is substantial material from which to conclude that SS if capacitous would most likely have declined the vaccination. ….  it must be borne in mind that even though a capacity to weigh and balance the decision in focus has long disappeared, SS has nonetheless consistently and volubly opposed the vaccination. SS’s reality is undoubtedly delusional, but that does not stop it being her reality. This has to be both recognised and respected.” (§25 Re SS [2021] EWCOP 31)

Each case, then, has to be assessed on an individual basis, and it cannot be presumed that simply because vaccination is in a person’s medical interests according mainstream scientific evidence, that it is therefore in their best interests overall.  

If the evidence is that a protected party would have wanted to refuse vaccination (or is in fact refusing it, albeit non-capacitously) then that would need to be taken into account as part of best interests decision-making, and could (as in Re SS) lead to a best interests decision not to vaccinate. 

The difficulty in many cases (including the one reported here ) is that P’s own wishes may not be, to use the language of the Act,  “reasonably ascertainable” – and in cases like the one we’re focusing on in this blog post, which concerns a person with a learning disability, the person may never have had the capacity to express their own values, wishes, feelings or beliefs about vaccination.

Where – as here – the person at the centre of the case has not been able to communicate either past or present views about vaccination, it is difficult to see – as we will show –  how any argument from family members challenging mainstream scientific research about the safety or efficacy of the vaccine could influence the court’s best interests decision-making.

The hearing on 29th November 2021

This hearing concerned whether it is in the best interests of a man (P) living with what was described as “severe intellectual disabilities and severe Autism Spectrum Disorder” to receive COVID-19 vaccinations.

There was no dispute that P lacks capacity to make his own decision about COVID vaccination, and hence that a ‘best interests’ decision was required. 

He doesn’t understand the relevant information about COVID-19 and cannot weigh it up in coming to a decision.  Attempts to help him to understand and express a view have failed: asked what coronavirus is, he pointed to the symbol for sweets.  When asked what happens if you get the virus, he twice pointed to the symbol for a holiday. 

It had proved impossible to elicit P’s wishes and feelings on the matter – beyond the obvious observation that he dislikes having needles put in his arm.  

At a meeting on 1st March 2021 (so 9 months before this hearing), it had been agreed by the care home staff looking after him, his GP, and his father that vaccination was in his best interests.

His sister does not agree, which is why the case came to court.

The application (for an order that vaccination is in P’s best interests) was made by NHS Nottingham and Nottinghamshire Clinical Commissioning Group (“the CCG”), represented by Ben Tankel of 39 Essex Chambers. 

The man at the centre of the case, P, was represented via the Official Solicitor by Victoria Butler-Cole QC, also of 39 Essex Chambers.

P’s father played a “low key” role (the judge’s term) as a litigant in person. (There are no quotes from him in this blog because when offered the opportunity to contribute in his role as a party in court he usually declined to do so, beyond simply asserting his support for his son to be vaccinated.)

And P’s sister was represented by Geoff Peter of Wingrove Law – a lawyer we’ve not previously seen in the Court of Protection, and a specialist in the law relating to new build properties.  (We understand that P’s mother supports the position of P’s sister but that she was ill and unable to attend court.)

The hearing opened with a discussion of the admissibility of evidence from a retired GP whose advice P’s sister had sought and then forwarded to the court (see our previous blog post, and further discussion of his role by Daniel Clark below). Although this GP, Dr Jon Rogers, played no formal role in the case, there had been (as the judge put it) an attempt by the sister to “leak information” from him into the case, and so his role is of interest to us.

Counsel for the applicant CCG summarised their reasons for believing that vaccination is in P’s best interests and went on to describe the other parties’ positions as follows:

 “His sister objects to giving of COVID vaccination, full stop. The main substance of her objection is what I’ll call, in a non-derogatory way, an ‘anti-vax’ stance. The Official Solicitor is not objecting on clinical grounds but did have room for pause or hesitation over the issue of restraint, because by Friday we hadn’t set out what that would entail.  We now have done so and she agrees it is limited, proportionate, minimal and lawful.  And P’s father supports the giving of the vaccine.”

He said there was a question “about the extent to which the court should get involved with the generic questions about the merits of the COVID vaccination as such”, and drew attention to Hayden J’s statement that it is not the function of the Court of Protection to arbitrate on medical controversies.  In any case in which “mainstream scientific evidence” is set against the views of “anti-vaxxers”, the court – said counsel – “is going to prefer the former”.

Victoria Butler Cole QC (for P via the Official Solicitor) took the same position.  P’s sister, she said, had “submitted various Excel spread sheets which purport to set out scientific opinion …. We have no objection to the court looking at this, but it’s not going to take the court very far.  The court cannot prefer an Excel spreadsheet analysis from a non-expert over advice from the government and peer-reviewed articles in scientific journals”.

The judge was clear from the outset that “this is not a forum for a public symposium on the merits and demerits of COVID jabs that go beyond the best interests of this patient” and said “I do not want this to become a soapbox for a broader debate about the rights and wrongs of COVID vaccination”.  

The tension that ran throughout this hearing was between “mainstream” views (as represented by government policy, NHS England and JCVI) and the views of P’s sister (and the GP whose opinion she had elicited), which were critical of this mainstream perspective, questioned the dominant narrative about the safety and efficacy of the COVID vaccine and challenged government policy of mass vaccination and other ‘coercive’ measures. On our analysis, it seems that P’s sister set herself against what, for the Court, constituted an overwhelming body of scientific opinion on vaccination. 

As the judge stated at the outset, it is not for the Court of Protection to “embark on a broad, academically-wide debate on the merits and demerits of vaccination”.

The case for vaccinating P

The case of the applicant Clinical Commissioning Group (CCG) for vaccinating P was that, like everyone else, he was at risk of contracting COVID-19 – more so since he does not understand the need to observe social distancing measures.  The evidence is that people with learning disability are also more likely to become seriously ill and die from COVID-19. There is “very little to weigh in the balance against his receiving it”, said counsel for the applicant, since the restraint to enable vaccination would be minimal and brief.

The Official Solicitor (OS) took effectively the same position, providing research evidence published in the British Medical Journal in June 2021 based on review of 17 million patients showing that people with learning disabilities who test positive for COVID-19 are five times more likely to be admitted to hospital and eight times more likely to die. A long period of hospitalisation would be difficult for P, she said, and any physical restraint required for vaccination would be “very fleeting”. 

For both the applicant CCG and for the OS, then, the risk/benefit analysis was unambiguously in favour of vaccinating P.

The case against vaccinating P: A “veiled” and “tactical” approach from P’s sister

The sister (we’re referring to her as CT) gave a wide range of reasons as to why P should not receive COVID-19 vaccinations.  

The reasons she’d provided in advance, in documentation to the court (which we haven’t seen), were summarised or read out at different points in the hearing by counsel for the CCG and counsel for the OS and by the judge.

We understand that they relate to concerns about the clinical risks of the vaccine generally, and about the ethics of it being administered to a person like P without his consent (which of course he is unable to give, or to withhold).  

We have not seen CT’s witness statement, but according to counsel for the CCG her main focus in that document is that:

“… contrary to the established scientific consensus and all applicable public health guidance, she believes the COVID-19 vaccine is harmful. Opposition to vaccination appears to be the lifelong stance of P’s sister and mother: P has never received a flu vaccine and only received a few vaccinations when he was born[2]. (Counsel for the CCG)

The judge described CT’s witness statement as “an argumentative statement which goes from first principles to the efficacy of the vaccine itself”.  The documents CT had submitted, and those submitted by counsel on her behalf were, he said, “of a wide-ranging and general nature” concerning the safety and efficacy of COVID vaccination.

From what was said by counsel for the Official Solicitor, it seems that CT also suggested that people who are vaccinated are more likely to die from COVID than those who are not.  Counsel described this as “based on a misunderstanding of risk” and relied on the Office of National Statistics for evidence that the rate of death from COVID among the unvaccinated is 32 times higher than among the vaccinated.  

Counsel for the CCG addressed another concern apparently raised by CT in advance of the hearing: the problem of administering the vaccine to someone unable to consent to receive it. That, of course, is  what the Court of Protection process is for: it supplies the consent that those lacking capacity are unable to provide for themselves.  “To hold otherwise would mean that the most vulnerable members of society would be deprived of all medical treatment, which would be a far worse ethical outcome.” 

As observers, we have access to these arguments from CT only via the rebuttals from counsel for the other parties.  These were not the key arguments she presented in her oral evidence to the court. 

In court, CT raised concerns about not having been given sufficient information by the treating team about the risks and benefits of the vaccine for her brother, and said that in the absence of that information she did not believe that she (or, by extension, the court) was in a position to make a decision in his best interests.  

She also asked for further investigations to be undertaken. These included a blood test to see whether her brother already had natural immunity (which might have been achieved from an earlier COVID outbreak in his care home), an ECG, and research into possible counter-indications for vaccination due to drug interactions. If the court were to order that vaccination was in P’s best interests, she asked for this to be delayed until after Christmas, so that he could enjoy the festive season without side-effects. 

The judge found a “rather stark contrast” between the witness statement CT had submitted to the court, which he described as embodying “an inherent opposition to the vaccine and to the vaccination programme”, and the position she took in court today in which “she was careful to give credence to vaccination and the dangers of COVID” and to “follow what is obviously the court’s task of looking at what is in P’s best interests”.

Commenting on this “contrast” (between the documents submitted and the oral evidence), the judge said:  “I regret to say this. I wish in no way to be unpleasant, but I am quite satisfied that this was a strategic or tactical approach that was taken.”

He added: “I am satisfied that she is, in principle, in opposition to COVID vaccination (and maybe vaccination in general)”. 

The judge suggested that CT’s oral submissions in court served “substantially to cloud the issue” and that she had made “a veiled submission in the hope of deflecting consideration away from the substance of the case”.  This is “a dangerous approach and clouds the issue”.  

In the rest of this blog post, the three observers – (1) Daniel Clark, (2) Claire Martin and (3) Celia Kitzinger – explore the way in which the politics of COVID-19 vaccination played out in court, both via the sister’s attempts to introduce evidence from a campaigner who’s been explicit in taking a position against government policy on COVID-19 vaccination, lockdown, and laws about face-coverings, and via the sister’s own testimony in court, in relation to opinions she’s stated out-of-court. Finally in section (4), I draw on my experience of watching COVID vaccination hearings more broadly to make some suggestions for how people can put in place protection for themselves to ensure that they won’t be vaccinated against their wishes after loss of capacity, and how best to promote the wishes and beliefs of those who have, or may be about to, already lost capacity to make this decision for themselves.

1. Dr Rogers and politics in court by Daniel Clark

This was the first time I’d observed a hearing in the Court of Protection, and knowing in advance (from the listing) that it was about COVID vaccination, I expected it to stimulate reflection on my experiences in social care, as a paid carer.   

As it turned out, it was my interest in political theory (having just completed an MA) that was most stimulated. 

First, briefly, in terms of social care.  In this case, there had been (some months earlier) a COVID-19 outbreak in P’s care-home. Whilst it transpired that P did not contract COVID-19, the deputy manager was very clear that every resident was affected “one way or another”.  This did strike a chord with me. COVID-19 is not just a virus that has the potential to cause serious illness. Living in a care home brings a unique sort of social isolation for all residents, with family visits potentially cancelled depending on the scale of the outbreak. It also brings with it an overwhelming atmosphere of panic, both for residents and, I must admit, for staff. It’s hard to ‘switch off’ after your shift when, after a couple of days off, you could be going back to even more people who have tested positive. 

These were, however, background thoughts. Instead, I’ve mostly found myself reflecting on the way in which politics and the Court of Protection came together. Before going further, I do want to acknowledge my own epistemic bias – that is to say, the bias I have with regards to the type of knowledge that I identify and categorise as true. I accept the mainstream science regarding the COVID vaccine, and I believe that lockdowns saved many thousands more people from dying. I emphasise this so that all of my cards, so to speak, are on the table.

Dr Jon Rogers

The hearing got off to a rather confusing start (at least for me) with a discussion about “the unauthorised disclosure of court material to Dr Jon Rogers” (described as “a retired GP”) and whether an email from him could be used as evidence. 

The judge ruled the evidence inadmissible because it had been improperly obtained (P’s sister had breached a court injunction by sending confidential court documents to Dr Rogers) and because the Court of Protection Rules Part 15 procedures had been breached in a number of other ways (as described in an earlier blog).  

Dr Jon Roger had been subsequently revealed (after the Official Solicitor, on receipt of his letter, had requested his CV) to be one of the directors of the UK Medical Freedom Alliance (UKMFA), one of whose objectives is to “provide information and resources to aid people who wish to challenge mandated Covid-19 testing, interventions or Covid-19 vaccines, and any resulting restrictions or penalties imposed on them”. 

The involvement of Dr Rogers was raised again later in the hearing, when P’s sister (CT) was cross-examined by Victoria Butler-Cole QC. “You showed Dr Rogers a draft of your witness statement and got his comments on it before you filed it with the court”, she said. CT confirmed that was so.

Although Dr Rogers is a “retired GP”, the GMC ‘temporarily restored’ him to the register “as part of the UK government’s response to the coronavirus (COVID-19) pandemic.” It is somewhat ironic, then, that having been re-registered for this reason, he opposes the government’s response to the pandemic[3].

Both as a “retired GP” and with reference to his re-registration by the GMC, Dr Rogers has used his medical credentials to spread what has been described as “disinformation, conspiracy theories and pseudoscience” about the pandemic itself, and the vaccine, especially via the UKMFA (see this tweet thread for commentary).

Dr Rogers is very publicly opposed to a great deal of government policy in relation to COVID-19.  He has signed a number of public letters (such as this one) raising concerns about COVID vaccination, including what is said to be the government’s exaggeration of the nature of the threat from COVID, its inappropriate and unethical use of behavioural science to generate fear, and the misunderstanding concerning asymptomatic spread and its use to promote public compliance with restrictions. He signed a letter to the Education Secretary arguing for #NoMasksInClass and he’s a signatory showing support for the British Ivermectin Recommendation Development Group (BIRD).

The UKMFA provides links to downloadable template letters for people to use across a range of situations: for example, if you have been refused access to any type of medical treatment without taking a COVID-19 test; to help parents withdraw their consent to any offer of COVID-19 vaccines for their child at school, and to challenge any claim that their child has Gillick Competence to consent themselves; and a letter for care home staff to use to decline ‘mandatory’ vaccines.

The videos Dr Rogers has posted on Facebook express his passionate resistance to government policies on lockdown, mask-wearing, and vaccination – in large part due to his commitment to “freedom” in the form of individual autonomy and the right to choose.  

He commented recently on a survey which he found “reassuring” for showing that “the majority believe that protecting the right to choose is more important to people than controlling Covid” (23rd November 2021, Facebook).

At a “Freedom Rally” (College Green Bristol, 15th May 2021, Facebook Video 98) he was scathing about mask-wearing (which does not work, he says, to prevent COVID transmission) as a form of “virtue-signalling”.  His speech comes to a rousing conclusion, as he pumps his arm up and down over his head and leads the chant, followed by cheers, whistles, and applause from the crowd.

We are now in a situation where we can carry on living in fear, living in this dystopian, disproportionate world or we can stand up and say: I am free!  You are free!  We. Are. Free!

We are free!  We are free! We are free! We are free! We are free! We are FREE!”

At an event called “Glastonbury Freedom Festival”,  Dr Rogers referred to government policy as “a scam”,  to roars of approval from the crowd. He said of COVID: “Children don’t get it. This is not a disease of young people. This is a disease of the elderly and frail” (at around 4 mins, Facebook Video 107). 

In the same talk, he says: “the vaccine is not safe, and frankly it’s not even very effective” (at about 19:40, Facebook Video 107) stating that “most of the people in hospitals with COVID have had two jabs”.

Freedom from coercion is again at the core of his message:

This is a little virus that I’m not that frightened of. I’m frighted of the totalitarian regime that seems to be coming on the back of it. I’m frightened of the vaccine passports. I’m frightened of the identity cards, I’m frightened of all those things, but I’m not frightened of COVID.  I personally have a number of co-morbidities. I’m 66.  But I reckon I’ve got a 1% chance of dying if I catch it. That’s not enough to make me want to rush out and get a vaccine.”

Last year, as part of my MA in Political Theory, I spent a great deal of time reading (and writing about) Hannah Arendt. In 1967, she published an article titled Truth and Politics. Here she wrote that “no opinion is self-evident. In matters of opinion…our thinking is truly discursive…until it finally ascends from these particularities to some impartial generality”. Facts, on the other hand, are in her words, “irritating…for they have no conclusive reason whatever for being what they are”. What connects fact and opinion for Arendt is that neither of them is self-evident, “and this may be among the reasons that opinion-holders find it relatively easy to discredit factual truth as just another opinion”. Thus, the factual truth that the COVID vaccines are mostly beneficial and not harmful can be discredited as “just another opinion”.

I have raised this because Arendt’s essay clearly sets out that opinion is political but truth is strictly non-political: in fact, she suggests, it may even be “anti-political”. Therefore, when something that purports to be fact is presented in an overtly political way, we have the glimmer of an idea that what we’re being told is actually an opinion. Dr Rogers speaks quite clearly about being ‘“frightened of the totalitarian regime that seems to be coming” as if it is a fact. In the interests of transparency, I would like to be very clear that I have grave concerns about the policy direction of this government. But to describe our government as on the cusp of totalitarianism as a result of extraordinary measures taken in an extraordinary situation is not a factual description: it’s a political opinion. 

I do suspect that concerns about the vaccine have been conflated with concerns about the handling of the COVID-19 pandemic. In a review of a book about ‘Anti-Vaxxers’, Julie Leask tells us that vaccine concern “has always been a proxy for wider fears about social control”. In the last 21 months, we’ve had what could be described as “social control”, in the forms of lockdowns, mandatory mask wearing, and limitations on social contact and travel. And then a new vaccine.  

It is when the distinction between fact and opinion is blurred that we are in potentially hazardous waters. CT’s view of P’s best interests was couched in claims of being factual when they amount to opinion (her views about vaccination, discussed in detail by Celia Kitzinger below, are simply not reflective of commonly accepted scientific facts). When opinion masquerades as just another version of truth, the waters become muddied, and (as in this case) decisions are delayed. It is presumably because the care home gave weight to CT’s opinions about what was best for P – opinions that seem to have drawn on the kinds of campaigns advanced by Dr Rogers (among others quoted in the Introduction to this blog post) – that P did not receive a vaccine for almost 9 months.  

As a result of anti-vaccination campaigns, at least to the extent that CT is part of them, P has been unvaccinated and at risk of COVID, despite the fact that (as his counsel established from the care home deputy manager) he has been “out and about in the community”, unable to understand social distancing or to wear a mask. This would have significantly raised his risk of contracting COVID-19.

What remains, therefore, is a situation in which the politics of the pandemic (including the vaccine rollout) have intruded into the assessment of the best interests of P on the ground. This is not to say that the beliefs held by CT are not genuinely held, the result of years of her own research. However, what cannot be avoided is the fact that her beliefs, in tandem with her political opinions about vaccination, delayed a best interests decision for almost 9 months.

Of course, I do not believe that CT genuinely wanted to put her brother at risk – her love for him seemed quite profound.  A possible interpretation of CT’s resistance to her brother having vaccines is that she believes that her priority is to protect him from human-made harm, and that it is more important to protect him from this than a ‘natural’ harm (of infection). She was doing the best she could in accordance with her beliefs, desperately trying to keep her brother safe against the weight of the NHS and the law. Speculation aside, what remains is that CT’s cost-benefit analysis misidentified the greatest risk in this case i.e. the risk of COVID rather than the risk of vaccination.

As Dr Marcus Gillespie writes, a “common source of error in deciding who is an expert is to mistakenly conclude that because someone is an expert in one field, they are an expert in another” (emphasis in original). He uses the example of Senator Rand Paul who, when people know he is a doctor, is usually assumed to know ‘as much about Covid-19 as the experts he is challenging’. However, Rand Paul has a medical degree in ophthalmology, meaning that ‘he isn’t an expert in the relevant field’ (emphasis in original). 

Despite the fact that GPs actually do make judgments all the time about best interests for people with complex long term needs in a community residential setting, Dr Rogers is not an “expert” in the relevant fields of immunology, virology, epidemiology. 

The judge found, ultimately, that it was in P’s best interests to receive both shots of the COVID vaccine, the booster, and any subsequent booster deemed necessary. I was relieved by that. 

This considered judgment emphasised to me that fact (not political opinion) is at the heart of the decision-making process of the Court of Protection. 

2. Clouding the issues: The blemish game by Claire Martin

Many thoughts were going through my mind observing this hearing.

Why was this case only reaching the court now – 11 months after the introduction of COVID vaccination in the UK? 

What is the Court of Protection’s position on debating the whys and wherefores of COVID-19 vaccination? 

What do care homes and treating medical teams need to understand in order to navigate decisions about, and (if necessary) expedite, medical treatments for people who lack capacity, when there is family disagreement about those treatments? 

How can the Court navigate arguments against action X when those arguments do not seem to be in ‘good faith’? 

I found this hearing an education. P is the only resident in his home (of eight people) who has not received the COVID-19 vaccination. He doesn’t like needles (or indeed any medical intervention) and his sister was against the vaccination for him, she said, because she was concerned about the impact on him emotionally and because the clinical risks of vaccination for him as an individual (as opposed to the clinical risks to him of COVID), she asserted, had not been fully investigated. 

Witnesses at the hearing

The hearing opened with an initial discussion about admissibility of evidence from retired GP Dr Jon Rogers (previously blogged elsewhere) and then opening submissions (as described earlier).  This was followed by witness evidence from the Deputy Manager of the care home. 

Deputy manager of the care home

Counsel for the CCG, Benjamin Tankel, asked her how long she had known P (12 years) and how often she sees him (every day when at work). 

We learned that P is generally an anxious person and is prescribed Lorazepam for this by a psychiatrist. Anymedical procedure causes him anxiety, and restraint, in the form of holding his arms for “no longer than two or three minutes” is sometimes necessary.

The deputy manager explained that restraint is ‘potentially’ necessary for medical procedures and the home has ‘a lot of plans in place’ for that eventuality and they ‘try to avoid it, but it is a possibility’. Notably, P has PCR tests every twenty-eight days and does not resist or experience distress from this.

Counsel: Does he form a negative view of the people restraining him?

Deputy Manager:  No, he doesn’t actually.

Cross-examination by Geoff Peter (for P’s sister) raised the question of how long P remains distressed after a medical procedure (such as a blood test): “it depends … usually around 1-2 hours”.

It transpired that the care home had a COVID-19 outbreak last year and all residents, except for P, contracted the virus. 

Exploring P’s understanding of, and response to, injections, the deputy manager clearly described P’s visceral response (‘Yes he understands what a needle is. He knows enough to not want a needle in his arm’)  – as distinct from an understanding of what the injection is for and a considered decision to refuse. Victoria Butler-Cole QC further explored this line of questioning  in her cross-examination.  

Counsel: Are there any medical treatment decisions where he’s been assessed as having capacity to make decisions for himself?

Deputy Manager: No.

Counsel: Does he understand what Covid is?

Deputy Manager: No

Counsel:  Can he socially distance?

Deputy Manager: No.

Counsel: Can he wear a facemask?

Deputy Manager: No. He would not wear a face mask under any circumstances.

Counsel: He’s going out and about in the community though, isn’t he?

Deputy Manager: Yes.

Counsel: Can he self-isolate, or manage periods of isolation?

Deputy Manager: No. He’s not able to do that due to his behaviours.

Counsel: Would he find it difficult to be admitted to hospital?

Deputy Manager:  Oh yes. Very, very difficult.

The deputy manager also explained the care plan for P should a direction be made to give him the COVID-19 vaccination: they would prepare the vaccination out of sight, P would be distracted by watching TV or doing something he enjoys, then he vaccinator (a stranger to P)  would enter, P’s arms would be held by carers for a couple of seconds and the vaccinator would vaccinate him swiftly and then leave the room 

P’s sister (CT)

Mr Peter opened his questioning of P’s sister by saying that there had been a suggestion in the CCG position statement that CT was ‘anti-vaccination’ in principle.

 NO. That is abhorrent. I strongly refute those claims. I am a medical ethicist. I have a Masters in biomedical law. …. As an ethicist I want a risk-benefit analysis. That was denied to me. I felt bullied and victimised. What should have been good clinical practice has been tainted by how vaccination is presented in the press. I feel very much alone in trying to make sure P’s wishes are maintained. … His best interests is not vaccination. This is not about the vaccine – it is purely and simply about the balance for P.”

Notwithstanding the (im)possibility of ascertaining P’s ‘wishes’ in relation to COVID-19 vaccination (it had been agreed by all parties that P lacked capacity to decide about vaccination and those caring for him said they were unable to ascertain his wishes), my understanding of CT’s submission regarding the balance for P (not having seen her position statement) is essentially that her interpretation of the scientific evidence is such that her brother is not at risk of hospitalisation or death from COVID-19 (should he become infected), that he is at higher risk of complications from the vaccination, and, therefore, that it is not in his best interests to be sedated and restrained in order to administer that vaccination. 

Counsel for the local authority cross-examined CT:

BT: Do you have any expertise in immunology?

CT: I have many books. I’m not an expert.

BT: Virology?

CT: I read books. I’m not an expert.

BT: Epidemiology?

CT: The same – I have read up on the subject widely but I don’t consider myself an expert.

CT explained that (from her reading) P risked myocarditis or pericarditis from the vaccine and that those risks had not been acknowledged in a balancing exercise. She argued that this, combined with the necessity of restraint to administer an injection, meant the vaccine was not in P’s best interests. She wanted further assessment of those risks for her brother, in the form of an ECG, and she also wanted an antibody test for him to establish any current immunity from COVID-19. Of course, further assessment would entail more medical intervention for P – which would also necessitate restraint (for a blood test for antibodies) and likely sedation too for an ECG. 

This didn’t hang together. If one of CT’s key anxieties was to prevent unnecessary medical procedures for P (because he finds them distressing) arguing for more procedures flies in the face of that concern. 

It started to feel to me that CT was using a straw man argument and that her anxieties were actually more about the vaccine per se.  

This became most apparent when counsel for P via the Official Solicitor asked CT a series of questions.  

Did she accept that COVID-19 can result in “serious illness, hospitalisation and death”?  CT replied with a question: “for what percentage?”

Counsel said that wasn’t what she was asking and asked the question again.  CT said, “not for everybody”. 

When pressed whether the risks are there for everyone, she said “no”. 

When pressed further as to whether COVID-19 is worse than the vaccine, she said “it depends”.

I felt for CT when she said she felt “bullied and victimised” by medical professionals at the best interests meeting earlier in the year. She said that the minutes of that meeting were not accurate in terms of how the medical professionals engaged with her and her concerns. It is entirely possible that she was dismissed at that meeting, and that the minutes (written by the professionals) were from their perspective only.  It must have been a difficult meeting for her. It is also entirely possible that CT’s position in that meeting was lacking in transparency about why she was taking the stance she was. Both parties would therefore be approaching the meeting with suspicion of the other. 

It did start to feel as if she was against vaccination in principle. Instead of just stating that, in good faith, CT’s oral argument in court rested upon criticism of the process of medical risk-benefit analysis for P. 

As the hearing continued it seemed as if there would not, ever, be enough ‘evidence’ from assessments of P’s medical risks, to satisfy CT that COVID-19 vaccination was in her brother’s  best interests. 

If an argument is made in good faith (i.e. you state your clear position and argue from there) then this can be addressed and dealt with by others. If an argument is not made in good faith, then, as at this hearing, parties end up talking about things that are not, really, the nub of the issue. 

In his judgment, Rogers J said: “I reject the submission that there is insufficiency of information before the court today. This was a veiled submission in the hope of deflecting consideration away from the substance of the case.”

How can and should courts deal with experiences such as this? If, indeed, CT’s position is one of anti-vaccination in principle, then not saying so means that the questions, discussions and evidence in court are predicated on (what are for her, according to her underlying belief) irrelevancies. 

Everyone then starts to feel that their time is being wasted. 

Reflecting on CT’s account of feeling ‘bullied and victimised’ in the best interests meeting, I am wondering whether she could have felt the same in this court hearing? The Court of Protection takes an inquisitorial position – rather than a combative approach. Nevertheless, as stated earlier, it has to rely on the scientific evidence accepted and adopted in national guidance insofar as medical matters are concerned. CT might not have appreciated the inquisitorial nature of this court.

In this blog post, journalism students make exactly this point about the Court of Protection: 

It wasn’t combative like you see on the TV.  Instead there was a very clear statement from the judge that these were civil proceedings and were very different from a criminal case – there was no ‘prosecution’ and it should not be seen as ‘a fight’ – ideas which seemed to be in the head of the patient’s brother, and the judge was keen to challenge this. The judge said the Court of Protection was trying to make a best interests decision which meant people coming together to try to work out what was right for the person at the centre of the case – combining what was known about his clinical condition with what was known about him as an individual.

I wonder whether, because the COP operates in this way (and not in a combative manner), CT’s approach was misguided. An approach that appears to be in ‘bad faith’ (i.e. not actually a party’s true position) is unusual in the COP, and its effect was to derail the usual etiquette and conventions. CT might not have known this, of course, and her counsel is not a COP barrister, so also might not have been familiar with the conventions. Even if CT and her advocate had been aware of the inquisitorial nature of the court, they would have been at a disadvantage due to the fact that the court accepts the mainstream scientific evidence – but at least they might have chosen the approach of presenting a transparent, good faith, argument. Then all parties would have been advancing their ‘true’ position. 

So, CT might well have, again, “felt bullied and victimised” in this hearing.  It is possible that she (and anyone who has some scepticism about, or outright opposition to, vaccination) will feel this way in general at present, given the public health narrative and messaging about COVID-19.

Anyone who is already feeling “bullied and victimised” is likely to respond badly to the COP’s (mandated) position in relation to what it recognises as medical evidence.  

From a relational perspective (whatever one thinks about vaccines), it might have felt to CT that her ‘bullied’ position was acceptable to the court, at the expense of challenging (what CT might see as) the “bullying and victimising” behaviour of the court/the government/the scientists/the system.  

Under these circumstances it would be hard to hold on to an “adult ego state” (see next section) while feeling “bullied and victimised”.   If your frame of reference (to a specific issue) is entirely through this lens, a forum where ‘best interests’ are based on a body of information that you fundamentally oppose is not going to seem fair. It might then lead to particular approaches as a way of coping. I explore one potential approach below. 

The blemish game

Eric Berne, the founder of transactional analysis, wrote a book called Games People Play. In this book, he describes:

a series of “mind games” in which people interact through a patterned and predictable series of “transactions” which are superficially plausible (that is, they may appear normal to bystanders or even to the people involved), but which actually conceal motivations, include private significance to the parties involved, and lead to a well-defined predictable outcome, usually counterproductive.”

One of those ‘games’ is called the ‘blemish game’. In this game, the (possibly unconscious) aim of the game’s instigator is to keep everyone, including oneself, looking in a direction other than the key direction. This involves relentlessly pointing to the failings of others and deflecting attention away from one’s own contribution to proceedings. 

Unless everyone can occupy what Berne calls the ‘adult ego state’ (distinct from a parent or child ego state), dialogue and relationships are compromised. 

Stating your position, plainly and straightforwardly, would fit the ‘adult’ role. It is very hard to argue about something when the real something is different. I ended up thinking that this is exactly what was happening at this hearing, and it made it hard for everyone to approach their task.

People have many and varied views on issues of our times. Misinformation and disinformation are rife. At the same time, people are entitled to hold whatever views they wish. Why not just state your view – especially if your case hangs on that position? In a court of law any view, if it informs a submission, would rightly be scrutinised. If a view underpins a party’s position, it is good faith to name that view and to articulate it clearly. Then everyone can proceed with trust. Without that basic ground-rule being observed, there is a pervasive sense that discussion of the issues is missing the point. 

Going back to my original questions, I wonder now whether the reason the case took so long to come to court was because the system around P got caught up in the ‘blemish game’, chasing more and more evidence that the vaccine would be in P’s best interests, in the hope of consensus. This pattern casts everyone in a perpetual conditional-to-striving reciprocal relationship, where the conditions are never met. . As Berne’s theory of transactional analysis would suggest, the system ended up in a “well-defined predictable outcome” – a lack of consensus that was protracted and counterproductive. 

The judge answered my question about how much the Court can become involved in the whys and wherefores of medical treatment (in this case COVID vaccination) – very little and they must rely on accepted authorities’ evidence. 

The third question seems trickier. What do care homes and the treating medical teams need to understand in order to navigate and (if necessary) expedite medical treatments for people who lack capacity, when there is family opposition? For P in this case, if they had realised they were engaged in a ‘blemish game’ they might have brought the case to court sooner. How would one realise? 

Perhaps the seriousness of the decision in question could be a guide – in this case P is a 39- year-old man with a learning disability, in a pandemic for which, as Victoria Butler-Cole QC emphasised, the evidence shows that “people in care homes and with learning disabilities are at increased risk [of COVID]”. Given the increased risks for P, the care home or health care team and CCG should have brought the case to the Court of Protection sooner, as soon as agreement could not be reached. The Vice President of the Court of Protection, Hayden J,  has often said in hearings (across a range of contexts) that “delay is inimical to P’s welfare”. 

The court navigated the issues of the argument, as presented by CT, in a straightforward and logical manner. It would have been possible for counsel to take a more compassionate, less adversarial, position if they had been addressing a clear (good faith) position. Instead, they were presented with needing to expose what they suspected was CT’s actual position underpinning her opposition to the vaccination for her brother. 

As it transpired, I think what happened was probably more upsetting and uncomfortable for CT, in the spotlight of a (virtual) courtroom with observers present, than had she simply stated her beliefs outright. 

Of course, she would have known that to do so would not have been supported by the weight of the internationally accepted scientific evidence (on which the court must rely), and would be likely to be dismissed. So, she was in a bit of a double-bind.

It must be isolating to be faced with the establishment position, when you hold a diametrically opposed view. I had no doubt throughout the hearing that CT believed that she was acting in her brother’s best interests – whatever the underlying reasons for opposing a vaccination for him, she expressed love for him and wanted what she thought was the right outcome for him. I’m not sure that was sufficiently acknowledged by the court. 

Furthermore, CT’s (and P’s) father was also a party to, and present at, the hearing. He listened to proceedings and confirmed to the judge that he was in favour of P receiving the COVID vaccination. This must have compounded the sense of isolation that CT reported feeling. 

Any of us can get caught up in the blemish game, especially when we feel strongly about an issue and we’re outnumbered and isolated. Someone holding the ‘adult ego state’ is required. Compassionately acknowledging that, if a person holds non-mainstream narrative views, that they feel unable to air straightforwardly, though understandable, this presents everyone with a very difficult task when trying to resolve a dispute. 

The judge did say that CT’s position “clouded” proceedings. If there was anything the court could have done differently, I think it might have openly acknowledged the emotion of the situation, and the discomfort CT might have been experiencing in relation to the court’s position of having to rely on officially recognised mainstream medical evidence. 

3. Is P’s sister an ‘anti-vaxxer’ by Celia Kitzinger

In the hearing, P’s sister took strong exception to her position being labelled (by counsel for the local authority) “an anti-vax stance”. She said it was “not accurate at all” and that it was “abhorrent that I’ve been characterised in this way”.  

The problem with labelling someone as “anti-vax” is that there’s a spectrum of views from people with a range of different concerns, hesitancies and skepticisms – both about the vaccine itself, and about the government responses to it.

Yet throughout the hearing it was hard (as Claire Martin points out) to see her opposition to her brother having the vaccine as driven by anything other than strong scepticism as to the merits of the science underpinning COVID-19 vaccination.

The arguments she raised were, in essence:  

  1.  COVID-19 is unlikely to be dangerous to P. This is because he’s “very robust immunologically” and apparently did not contract COVID-19 when there was an outbreak in the home and all other residents did become ill.  He’s a relatively young man (39 years old), he  has “no respiratory conditions, no liver or kidney malfunction” and in her view COVID might be “unpleasant” for him, but would not put him “significantly at risk”.
  • Vaccination may be dangerous for P.  Not only is it likely to require some restraint which he would find distressing, but also there are risks, she said, such as myocarditis. She said the vaccine can possibly cause COVID infection, or neurodegenerative disease, and can possibly be lethal in some cases – plus there are also potentially dangerous interactions with anti-psychotic and anxiolytic drugs P is receiving. She believes, in the context of mounting evidence that COVID vaccination does not confer full immunity against COVID infection, the risks of vaccination do not outweigh the benefits.  She also highlighted that there are more deaths from COVID-19 among those who have been vaccinated as compared with those who are not vaccinated[4].  
  • The evidence provided to her by health care professionals about the risks and benefits of vaccination is not trustworthy.  In her written statement (read out by counsel for P), she’d said that – contrary to medical claims – vaccines “do not limit or prevent infections” and “do not limit or prevent death”.  She repeatedly said that health care professionals had failed to engage adequately with her questions and concerns about – for example – drug interactions and the idea that vaccination was “experimental treatment”. She said: “the questions I raised were tainted by the way vaccines have been presented in the media, with exaggerated claims that they are contributing massively to the reduction of COVID.”  She wanted “upfront acknowledgement of the risks of vaccination” and had submitted to the court various Excel spread sheets which set out her own analysis of scientific data relating to the risks and benefits of vaccination.  

Counsel for the CCG (Ben Tankel) commented that although P’s sister’s opposition to COVID vaccination for her brother “is sometimes presented not as outright opposition but rather that more information is needed”, what it amounts to is “really just another way of saying ‘I am opposed to this vaccine, and the onus is upon you to convince me otherwise, and unless you can convince me otherwise there is an insufficiency of evidence’.” 

Counsel for P (Victoria Butler-Cole) likewise said in her closing summary that CT’s position “boils down to the fact that she doesn’t accept vaccination is safe, or that it works, or that he’s likely to get ill if he doesn’t have the vaccine”. 

These assessments were supported from what I discovered when searching for P’s sister online.

P’s sister online

Although her identity is protected by the transparency order, her name was freely used in the course of the hearing and so I was able to google her to see whether there was any evidence online of her stance toward vaccination. 

I found that she has set herself up as a specialist in law and ethics, with a website offering legal support to members of the public. 

She’s already made public the fact that her brother might be subject to a forced vaccination order.  She said that her family had declined other vaccinations on his behalf “for years”.  

I learnt a lot about her views on vaccinations in general, as well as on COVID-19 in particular.  I’ll try to convey an accurate impression of those views, without quoting what she says directly at any length (because it could lead to her identification). 

Her views are not “mainstream” (ie. they are clearly different from those adopted by the court) but nor are they purely idiosyncratic.  They are shared by others who are sometimes branded “anti-vaxxers”, including some of the people I quoted in the Introduction to this blog post.

She’s “very concerned” about vaccinations for infants: for example, the single 6-in-1 vaccine that is routinely given to babies at 8, 12 and 16 weeks to protect them against diphtheria, hepatitis B, haemophilus influenzae type b, polio, tetanus and whooping cough. She’s “appalled” that parents are simply expected to have their babies vaccinated without (in her view) being given relevant information about the risks and benefits of vaccination.  She sees it as “coercive”.  

She’s not surprised by government policies on COVID-19 vaccine because, she says, it’s an extension of the “coercive mentality we all have to obey” that starts at birth with childhood vaccinations and has culminated with the policies put in place during this (purported) pandemic. (I think she is sceptical as to whether, in fact, there is a genuine pandemic.) 

We are, she says, ground down by relentless “vaccine ideology” and propaganda about the safety and efficacy of COVID vaccination: it’s as if we are under “a spell” (she says) as we all line up obediently to be vaccinated.

She wants us to be “free of the system”, to become authentic and autonomous self-directed beings, acting according to our own inner values and to “step outside of the mass coercive society”. She advocates “critical thinking” and spiritual development. 

Having researched vaccines over a period of 15 years, CT she feels equipped to take aim at a mishmash of targets which, she says, account for the current  “scary”, “crazy” and “dangerous” situation that has led to compliance with a mass vaccination programme.  She attributes our submissiveness variously to: capitalism, consumer culture, Western culture, postmodernism, widespread internet use, loss of connectedness with each other and loss of connection with nature. We need to “wake up”.  

She also raises questions about how vaccinations are funded within the NHS.  Big Pharma, she says, is raking in millions.  

She repeatedly refers to her research (by which she means, reading books about vaccination), and to her credentials as someone with a bioethics degree.  Her cited sources include many of the people branded as “anti-vaxxers” by their opponents.  They include Judy Mikovits who claimed that a virus possibly implicated in chronic fatigue syndrome was possibly delivered through vaccines; and Ed Hooper’s book, The River: A Journey to the Source of HIV and AIDS, who advanced the theory that the origin of AIDS could be traced to oral poliovirus vaccines administered in the Belgian Congo between 1957 and 1960 (subsequently debunked). 

In court, CT declined to answer the Official Solicitor’s question as to whether or not she’d been vaccinated against COVID-19 herself.  But she has said online that she is “strongly” opposed to vaccination and would “never” be vaccinated.  

She is however willing to accept other people’s autonomous decision to be vaccinated, and acknowledges that there may be risk factors (like being over 65, or having a respiratory condition) that might change the risk/benefit analysis for some people.

So the online evidence is that there was, as Claire Martin proposes, and as the judge found, a disjunct between CT’s ‘authentic’ views, as expressed in her online engagement with people who share her broad perspective, and the more cautious and circumlocutory position she took in this hearing.

Implications of CT’s position for P

If an ‘anti-vaxxer’ is someone who is always, under all circumstances, opposed to vaccination for everyone, the evidence is that CT is not an “anti-vaxxer”. 

She is, as far as I can tell, opposed to vaccination for herself and for her brother based on her own assessment of the risk/benefit ratios, but she’s willing to accede to other people’s wish to be vaccinated if they are in the small group of people with risk factors (in which she’s never to my knowledge included people with learning disabilities) – and if they are not simply sleep-walking into vaccination based on brainwashing from the government.

But the term “anti-vaxxer” is often used in a more inclusive manner.  

According to an article in Nature, referencing the Centre for Countering Digital Hate

Every anti-vaxx message can be boiled down to a master narrative of three parts: 

  • COVID-19 isn’t dangerous; 
  • vaccines are dangerous; 
  • you can’t trust doctors or scientists.”  

This is pretty much what P’s sister argued in court and in her online materials. 

If this is the position you start from, it must be hard or impossible to understand why other people are of the view that it would be in your brother’s best interests to be vaccinated against COVID-19.  

It makes sense to contact someone with the resources of an organisation like UKMFA to ask for support when up against a court application to vaccinate P.

It also means P’s sister had a choice between: (1) standing firm and saying what she believed to be true, challenging the mainstream; or (2) trying to ‘game the system’ by accepting the ‘best interests’ premises of the court and seeking to influence the risk/benefit analysis.  

On the basis of my observation of many court hearings, I don’t think either approach would have resulted in the outcome she wanted.  

For the reasons outlined earlier, it seems likely that for the vast majority of COVID vaccination hearings – at least for protected parties whose own wishes and feelings cannot be ascertained – the court will rule, on the basis of overwhelming scientific consensus, that vaccination is in P’s best interests.  It increasingly feels like a foregone conclusion.

That is how impartial administration of the law works, in practice, to uphold mainstream science and government policies.  

The role of the Court of Protection is thereby, inevitably and inescapably, in my view, part of the “politics of the pandemic” and not aloof from it.

4. How to refuse COVID vaccination by Celia Kitzinger

Those of us deemed to have mental capacity to make our own decisions about vaccination can decide either to consent to, or to refuse, the offer of COVID vaccination – and if we refuse there is no legal requirement (in England and Wales, or Scotland) for us to explain our reasons for doing so, or justify our decision.  

It’s quite likely that enquiries might be made as to the reason for refusal, in case more information or explanation might change the decision, or in case the offer of an alternative place or mode of administration might be helpful. Seeking to understand why people refuse treatments and offering alternatives is part of supportive healthcare.

There may be also be attempts to persuade or incentivise (in New York with pizzas and Big Macs; in Austria with brothel visits). 

There may be restrictions on the unvaccinated (as in AustriaItaly and Germany, and as feared in the UK). 

 Mandating COVID vaccination for all NHS staff who work in health and social care settings regulated by the Care Quality Commission (currently due for implementation in April 2022) is a clearly “persuasive” or “coercive” move insofar as job retention may depend on vaccination: one hospital chief said:There’s a possibility if they choose not to be vaccinated they could be redeployed. And if we can’t find that opportunity to redeploy them then the consequence is that they will [not have a job].” But even he added “We will not make individuals be vaccinated…. ultimately it is their choice“.

What he meant, I assume, is that – after the attempts to persuade, incentivise, and encourage you to have a COVID-19 vaccination fail, and if you still refuse vaccination despite the loss of your job – nobody can lawfully physically restrain or sedate you and administer the vaccine against your will.  

That is what changes when you are deemed to have lost capacity to make your own decision about vaccination.  

Refusing for your future non-capacitous self

We are all potentially no more than the blink of an eye away from a stroke, a cardiac arrest, a car crash, a sporting accident – some unexpected injury which could mean that we lose capacity to make our own medical decisions.

Unless you have made a legally binding refusal of COVID vaccination in an Advance Decision to Refuse Treatment (ss. 24-26, Mental Capacity Act 2005), then once you are deemed to have lost capacity for this decision, it’s someone else’s job to decide whether or not vaccination is in your “best interests”.  The decision-maker must take account of any views you may have expressed before you lost capacity (in writing or via family reports), and your present wishes and feelings, in so far as they are ascertainable.  But neither your past nor present views about vaccination are determinative.  They are considered as just one element of best interests decision-making in the context of mainstream scientific research.

And if there’s disagreement between the people who care for you and are concerned for your welfare (your family, friends, treating clinicians, paid care staff), then you could be “P” in the Court of Protection with a judge having to decide whether or not you should be given COVID vaccination (or any other medical treatment for that matter). 

If you know now that you would want to refuse COVID vaccination if you were to lose capacity in the future, the best thing to do to ensure your wishes are respected is to make an Advance Decision to Refuse Treatment. This is legally binding on clinicians (they could not then lawfully vaccinate you) and it would avoid painful and lengthy arguments between your family and your treating clinicians about what it in your best interests (and potentially a court hearing).

You can check out Compassion in Dying for information about how to prepare these documents, but if vaccination is the ONLY medical intervention you want to refuse at this point, it’s very simple.  It’s a method also used, for example, by Jehovah’s Witnesses who want to refuse blood products. You simply write something like this: 

I refuse vaccination against COVID-19 (including boosters and any variations of the vaccination not yet invented) under all circumstances.  I make this refusal knowing that, according to mainstream science, my life may be shortened as a result.”  

You need to sign and date it in the presence of a witness (who can be anyone you choose – all they’re  doing is witnessing that they saw you sign it), and then ask your GP to put it on your medical records.  That’s it. (Note that the bit about “my life may be shortened as a result” is required by law and your treatment refusal won’t be valid without it, see 25(5)(a) Mental Capacity Act 2005).  You don’t have to give your reasons – though you may of course choose to, and if you do, this may make your treatment refusal more “persuasive”.

I believe it’s very important to make a formal, written, witnessed, Advance Decision to Refuse Treatment if we know  for sure that we wouldn’t want COVID-19 vaccination after loss of capacity to make that decision for ourselves.

Without it, doubts will inevitably arise.

 It’s not necessarily straightforward to extrapolate from the choices a person made before they lost capacity to what they would want after losing capacity.  

Some people who refused vaccination on the basis of their own risk/benefit analysis when they were healthy and living in their own homes might make a different risk/benefit analysis and wish to receive vaccination if they were to become brain-injured, vulnerable and were now in an ICU or care home with an increased risk of contracting COVID-19 and/or becoming seriously ill as a result and/or passing on infection to others with whom they live.

Some people who consented to vaccination when they were healthy may wish to refuse vaccination (and other possible “life-prolonging” treatments) if they were to become brain-injured and no longer able to enjoy (what for them is) “quality of life”.  Any opportunity for an ‘early exit’ from that scenario – even the prospect of a fairly unpleasant death from COVID-19 – might be positively valued.  

You may not know for sure whether you would want COVID vaccination or not if you were brain-injured in future and unable to decide for yourself.  It might feel like there are too many unknowns. In that case, you may be content to leave it with the doctors treating you at the time to decide.  Or you could discuss the matter with a trusted family member, friend or ally – someone who understands your values and beliefs and is able to be assertive in medical situations  – and  appoint them as your Health and Welfare Lasting Power of Attorney (ss. 9-14, Mental Capacity Act 2005) to make that decision for you (instead of the doctors) when you cannot.  

But if you know for sure that you want to refuse vaccination (or any other medical interventions), you need to make that Advance Decision to Refuse Treatment now.  

Refusing for an (adult) friend or family member

Unless you’ve been appointed by the person (when they had capacity to do so) as their Health and Welfare Attorney, and the documentation has been registered with the Office of the Public Guardian, it’s not your decision about whether or not your brother, spouse, mother, friend or other family member is vaccinated.  That decision lies with the person with overall responsibility for the individual’s care (usually their GP) or – if there’s dispute – with the Court.  

Supporting advance refusal (ADRT) before the person loses capacity to refuse for themselves

If you are currently caring for someone (perhaps an elderly relative, a spouse, or someone with mental health issues) who has refused COVID vaccination and has capacity to do so, but might lose that capacity in the near future (e.g. because they have a dementia, or Parkinson’s), you might consider asking them whether they want to make an Advance Decision to Refuse Treatment (ADRT) relating to vaccination – and any other treatments, for that matter.  Bear in mind, of course, that they might have a change of mind about vaccination if the circumstances were different, and that a current refusal doesn’t necessarily translate into a future refusal, or vice versa – but if they are certain about refusing vaccination after loss of capacity, they should do that now in an ADRT.  This enables them to make an autonomous choice about their own healthcare, and relieves the future burden on you of having to explain to doctors (or the courts) what they’d want.  

It’s especially important that people you care for should make an ADRT if you disagree with their position on COVID-vaccination.  If they don’t make their own advance refusal, you could find yourself in a really uncomfortable position of having to tell doctors/the court what you think they’d want (not to be vaccinated) while simultaneously believing that it would be better if they were vaccinated. 

If you are confident that you are able to represent the person’s views and the reasons why they want to refuse COVID vaccination (and other matters relating to their health and welfare), and if you feel able to communicate confidently with doctors, you could ask whether the person would like to appoint you as their Health and Welfare Attorney.

Representing someone’s views after they’ve lost capacity to refuse (without an ADRT)

If the person you’re caring for has already lost capacity to make or communicate their own decision about COVID vaccination, without making an ADRT or appointing you as their Health and Welfare Attorney, then you have a much harder task in representing their wish to refuse vaccination.

On the basis of what I’ve seen in vaccination hearings in the Court of Protection, I do not recommend attempts to challenge mainstream COVID science: for the reasons explained earlier in this blog, I think that’s unlikely to work.

You will need to focus on evidence about their position on vaccination (and maybe medical treatment more broadly).  Have you got evidence that they refused vaccines in the past?  Did they write anything expressing their views on vaccination – on social media, in letters, in emails?  Can you recall conversations with them about vaccination – did they have discussions with other friends or family in which they said anything relevant to vaccination decision-making? 

It doesn’t matter whether their objections to vaccination were based on challenges to the science, belief in ‘natural immunity’, fear of side-effects, scepticism about Big Pharma, revulsion at the idea of polluting their body with alien material, or anxiety about government control. They could be what others brand “anti-vaxxers” or “conspiracy theorists” (you might think them entirely misguided or delusional) but they are entitled to hold those views and to have them respected.  As Hayden J said, in the one case I’m aware of in which vaccination was not imposed on the protected party: “SS’s reality is undoubtedly delusional, but that does not stop it being her reality. This has to be both recognised and respected.” (§25 Re SS [2021] EWCOP 31)

Refusing for a person who has never had capacity to refuse for themselves

If the person you care for is (as in the case this blog focusses on) someone with a learning disability who’s never had capacity to make a decision about vaccination, and who struggles to understand what COVID is, and how vaccination works, it’s very likely (in my experience of the Court) that vaccination will be found to be in their best interests. 

This is because, in considering what is in their best interests, there is no ascertainable view about COVID vaccination from the person themselves to set against the overwhelming message from the mainstream scientific research that vaccination is medically indicated.  

The “instinctive reaction” which may lead many people with learning disability to recoil from unpleasant or painful medical procedures does not meet the criteria for capacitous refusal nor is it seen as expressing a view on the merits or otherwise of vaccination: even if it were to be so understood, it is unlikely to weigh heavily against the medical benefits as determined by mainstream science.

In the case this blog has focussed on, attempts to elicit P’s views were unsuccessful and this clearly influenced the position taken by the Official Solicitor: 

It does not appear possible to elicit P’s views about the vaccine.  It is possible that when asked about it by his solicitor he was saying he did not want an injection, but equally possible that he was asking for the WhatsApp call to end.  Even on the assumption that P does not want an injection, this appears to be an instinctive reaction to a mildly unpleasant medical procedure. This has to be balanced against the potential benefits to P, which he is not able to understand or weigh.” (Counsel for P via the Official Solicitor)

In several cases I’ve observed, parties have attempted to advance arguments about what position a never-capacitous P would have taken in relation to COVID vaccination if they had capacity.  These counter-factual arguments are fraught with difficulty.

In one recent case, the mother of a young woman with “severe learning disability” suggested that her daughter would “ “almost inevitably” have “expressed the same views as her mother” if she’d had capacity to do so. Rogers J noted that there was simply no evidence at all of the young woman’s own views, and to speculate on them would not be right (blogged here). 

In another case (blogged here), concerning vaccination of a fifty-year-old man (JS) with “severe learning disability”, from whom people had likewise been unable to elicit any views about vaccination, counsel for the applicant GP Practice (in favour of vaccination) speculated that “it would be unlikely for any adult to wish to be at risk of severe disease and death” and took the position that JS, if capacitous, would be that hypothetical person of legal fiction, the ‘reasonable man’:

“It is reasonable to consider that any person with capacity who was at heightened risk from COVID-19 would wish to minimise the risk of serious disease and hospitalisation through vaccination, and would be willing to accept the miniscule risk of harm from the vaccination.” (Conrad Hallin, Counsel for the GP Practice).  

His parents took the opposing view that it would be reasonable for JS, if he had capacity and understood the damage that had (they believe) been caused to him as a baby by the triple vaccine, and then by the measles vaccine, to decide not to risk another vaccination with the real risk of vaccination damage. 

Claims about what someone who’s never had capacity would decide if in fact they did have capacity and were acting reasonably are rather implausible and tell us more about the speaker’s own wishes, feelings, beliefs and values (and what they think ‘reasonable’) than about the views of the protected party.

I have not seen any evidence that judges use these counter-factual arguments (either from family members or from other parties) in arriving at their decisions. 

Closing remarks

This hearing raised important issues about the politics of vaccination within and beyond the court.  

  • How do health care professionals ensure that people who can’t consent to medical treatments receive the best possible care that (mainstream) science can offer in a timely fashion – even when family dissent?
  • How do we recognise and respect diversity of opinion – for families, for clinicians, and for the vulnerable people at the centre of these cases?
  • What is required to ensure that P’s voice is truly heard (where possible) and respected?
  • Bearing in mind that all of us may be future Ps, what can we do to plan in advance to safeguard our own autonomy?

We’d welcome feedback and commentary on these and other issues raised in this blog post.

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

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

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


[1] We have blogged about a number of these hearings: for example, Covid vaccination and a Christmas visitCovid vaccination contrary to parents’ wishes;  Covid vaccination in the Court of ProtectionDisputes about COVID vaccination should be rapidly referred to the Court.

[2] All material quoted from oral submissions and oral evidence in court is based on notes taken contemporaneously during the course of the hearing.  Quotations are as accurate as possible, but given that we are not permitted to audio-record court hearings, it is unlikely to be word perfect.

[3] According to the GMC website, checked by Celia Kitzinger in the course of posting this blog for publication, Dr Jon Rogers very recently relinquished his registration (on 12th January 2022) and may not now practise as a doctor in the UK.  

[4] This was addressed by Victoria Butler Cole, counsel for the Official Solicitor, in her Position Statement:  “The suggestion that people who are vaccinated are more likely to die than those who are not is based on a misunderstanding of risk.  It is inevitable that as a majority of a population are vaccinated (and in particular the older members of the population), there will be more deaths among the vaccinated, measured absolutely.  The relevant metric is what the rates of death are among the two groups, and the clear evidence is that the rate of death among the unvaccinated is 32 times higher than among the vaccinated.  Lay explanations of this are available at:  “Why most people who now die with Covid in England have had a vaccination” and “How do death rates from COVID 19 differ between people who are vaccinated and those who are not?

Continuing search for a placement – 5 months on

By Celia Kitzinger, 10th January 2022

The person at the centre of this case (NA) is a 17-year-old woman diagnosed with autism, mild learning disability and emotional dysregulation. She also has Hepatitis B, contracted from her mother at birth.

Since June 2019, when NA’s mother reported she could no longer care for her, NA has been a “looked-after child” (Children Act 1989).  

For much of that time she has been in secure children’s homes.   

She has experienced multiple placement breakdowns and is now on her 14th or 15th placement since mid-2019.  

During the five months I’ve been observing hearings concerning NA, she’s been living in accommodation described (by the local authority) as “wholly inappropriate”.  The local authority is seeking a suitable placement for her and the search has been nationwide for every conceivable form of placement, including children’s homes, specialist therapeutic residential homes, residential schools, solo placements, crisis placements, adults’ residential homes, and adults’ specialist placements.  Unfortunately, “despite the very extensive and continual efforts of the local authority to identify any suitable, alternative placement for NA, and including secure accommodation options, one had not been identified” (statement for the local authority). 

I have observed a series of five hearings, all primarily concerned with finding a suitable placement for NA. I think there have also been other hearings in this same six-month period that I have not observed.  So far, there is still no suitable placement for NA.

The problem seems to be a scarcity of suitable accommodation for someone with NA’s constellation of needs.

This blog post updates a previous post covering the hearings of 2nd July 2021, 16th July 2021, and 26th October 2021, which I’ve also summarised below.  

The two new hearings, not previously reported, are those of 16th November 2021 and 14th December 2021.  

It is hoped that this blog post will provide useful background for anyone concerned about secure accommodation for young people, who might also want to watch the next hearing, which is provisionally listed for 24th February 2022.

The hearing of 2nd July 2021before Mrs Justice Judd.

When this hearing took place, NA was being held inappropriately in an A&E bed after “a significant episode of dysregulation” between 25th and 27th June 2021 in the care home where she’d been living. 

She’d been continuously awake and “experiencing mania” for 72 hours, during which she gained access to the roof and threatened to kill herself. She threw boiling water from a kettle over staff caring for her, and threw nail polish remover into the eyes of a carer saying she wanted to blind them.  She armed herself with knives and parts from a broken bed and threatened staff.  She set fire to a tea towel, saying she wanted to burn the house down.  

The day before this hearing she’d been assessed as not meeting the criteria for detention under the Mental Health Act 1983, but there was nowhere to discharge her to because the care home was unable to agree to NA returning, saying it could not keep NA and others safe. 

The local authority had been trying “desperately” to find somewhere but had not been successful and asked for a three-week adjournment, which Mrs Justice Judd granted.  (More details in an earlier blog.)

The hearing of 16th July 2021,  before Mrs Justice Judd

At this hearing it was reported that an “emergency” placement had been found for NA in an annex (for her sole residence) to the main building of a children’s home. 

She had carers with her on a 4:1 basis, 24 hours a day.  “Staff have been pulled in from elsewhere to provide the support she needs, and have received appropriate levels of training in relation to restraint.”  

There was some difficulty with respect to authorising NA’s deprivation of liberty: it was opposed by counsel for NA via the Official Solicitor on the grounds that there was  insufficient evidence to displace the presumption that NA has capacity to make her own decisions about care and residence – at least at times – and because there is at the moment no evidence as to NA’s own wishes and feelings in this regard.  

Faced with an impossibly difficult situation, Mrs Justice Judd authorised depriving NA of her liberty for an interim period, but did so under the inherent jurisdiction rather than the Mental Capacity Act 2005.  

An expert was instructed – the Consultant Psychiatrist, Dr Claudia Camden-Smith, to report on NA’s mental capacity in relation to a number of areas including capacity to make her own decisions about where she lives and the care she receives, and whether she has capacity to refuse COVID vaccination (which she hasn’t had, and says she doesn’t want).   The report was due at the end of October 2021. 

Meanwhile, there had been a further period of dysregulation (the day after the previous hearing) involving alleged assault and criminal damage (at the hospital, before moving to the interim placement), following which NA had been arrested and detained in police custody, where she was verbally and physically aggressive and racially abusive.  (More information in an earlier blog post.)

The hearing on 26th October 2021, before Sir Jonathan Cohen

There was still no suitable placement available for NA.  Some of the options that had been under consideration were now no longer considered suitable due to the risks she has posed recently during some further periods of dysregulation.  

It was reported, for example, that a week or so earlier (on 18th October 2021) NA had attacked a staff member, dragging her downstairs, punching and kicking her in the back and ribs. She said she wanted to kill her and crack her head open. She was restrained. On release, she pressed the emergency release button into the carpark and went out and damaged vehicles. When the police were called, she went back inside and hid, but was carried from the building and placed on suicide watch in police custody. In the police cell she was observed to be hitting her head and pushing her acrylic fingernails up her nose to create blood which she spat around the cell. 

The crisis intervention team caring for NA were, it was reported, “truly shocked by the extent of the violence and aggression and accompanying risk”and were raising the possibility that NA has an undiagnosed psychosis.  She now needs 6:1 care to keep her and others safe.  

There was also no expert report because NA had refused to see Dr Camden-Smith. (More information in an earlier blog post.)

The hearing on 16th November 2021, before Mr Justice Poole

My understanding is that an application had been made to vacate this hearing because there had been no progress in finding a suitable placement for NA, and so “it would be in NA’s best interests to maintain her current placement and care arrangements and for the matter to be returned to court in approximately 4 weeks time.  By the next court date, it is envisaged that the available accommodation and transition plans will have crystalised.” (Lucy Leeming, counsel for the Local Authority).

The judge, Mr Justice Nigel Poole, required the hearing to take place.

I was reluctant to approve the papers [without a hearing]”, he said, “given the extensive restrictions that authorisation has been given for, and that are still sought, and given the length of time that P has been in accommodation that’s been considered unsuitable”. 

And so, he said “I required the full attendance of the court”. 

At the hearing counsel for the local authority,  updated the court on four matters: 

  1.  Despite a nation-wide search,  there was still no placement. Three possible placements were under consideration, and the preferred option would be available by the end of the following month after as-yet-unresolved application for registration by the Care Quality Commission.
  • NA has been charged with the offences of criminal damage and common assault, with “a raft of further criminal offences in the background”.    “We are”, said counsel of NA via the Official Solicitor (Arianne Kelly) “alive to the fact that there may be an impact on accommodation if a custodial sentence were to follow”.  
  • There had (finally) been a meeting between NA and Dr Camden-Smith on 11th November 2021 and it was expected that Dr Camden-Smith would submit her report by the 7th December 2021 deadline.  
  • There was concern about grooming – and police were aware of this.  NA’s phone had been taken from her and retained for police inspection. She’s agreed not to use Facebook and to share use of her phone with those caring for her.  There is no capacity assessment in respect of NA’s use of the internet and social media platforms.

At the end of the hearing, Mr Justice Poole said he would approve the order sought, and  extend the authorisation of NA’s deprivation of liberty.  This order covers a list of restrictions, including support by care staff at a ratio of 6:1 (“the highest I’ve so far encountered”), as well as “removal of items which could be used by NA to hurt herself, and extensive other restrictions”.  He approved the order because he was satisfied that “if not so restricted she would be at risk of serious harm”.  

The hearing on 14th December 2021, before Mr Justice Poole

There was still no progress on where NA should live, and no news about the criminal proceedings against her, which had been adjourned until 21 December 2021.

The local authority (represented by Lucy Leeming) said that the “deeply regrettable position” was that the hoped-for placement was no longer available.  The preferred placement had withdrawn its offer of accommodation for NA on the grounds that it would be a 5-month process for staff to be protected against Hepatitis B.  Given that the local authority had been “absolutely frank” with the placement about NA’s behaviour and medical diagnosis from the outset, it was “with a great deal of dismay that I inform the court that we came so far along the process, only for the offer to be removed”.  One of the other options that had been explored was also no longer available due to “concern from the landlord about a resident in the neighbouring flat who is elderly and vulnerable”.  

Counsel for the local authority reported that the expert report from Dr Camden-Smith, Consultant Psychiatrist, has now been received.  Dr Camden-Smith has confirmed that NA is autistic and has a learning disability and complex Post Traumatic Stress Disorder, or Developmental Trauma Disorder  – all of which are disorders or impairments in the function of the mind or brain, for the purpose of the Mental Capacity Act 2005.  (The expert did not find that NA suffers from a psychotic disorder, as suspected by current care providers.). 

It was reported that Dr Camden-Smith concludes that NA lacks capacity to conduct litigation, and to make decisions in respect of residence, care and treatment – including medication and consenting to or refusing COVID vaccination.   She does not, however, consider it to be in NA’s best interests for the vaccine to be administered against NA’s wishes, due to the likelihood of NA finding the experience highly distressing and the likely need for high levels of restraint in order to administer the vaccine.  (If the court accepts this conclusion, it will be only the second case I have seen in which COVID vaccination was not considered to be in a protected party’s best interests.)

What counsel for the local authority found “most troubling” was Dr Camden-Smith’s conclusion that due to the very high level of risk that NA poses, “NA may not be safe in the community, full stop, and that she needs admission to a Medium Secure Unit in a hospital”. 

Even if the parties and court accept this conclusion, the options for such an admission are very limited.  Of the two women’s Medium Secure Units for those with learning disability, one is closed for admissions due to an inadequate CQC rating, and the other is hundreds of miles from the family home and is over-subscribed.  As a result, NA would likely be admitted to a generic Medium Secure Unit (rather than one specifically for autistic women) – and the evidence is that autistic women in these units do very badly and many are discharged with higher levels of self-harm than when they were admitted.  Nonetheless, counsel for the local authority acknowledged that a benefit of such a placement would be that NA has suffered significant social isolation at her current placement and an admission to a hospital would provide NA with a safe environment in which to form relationships with peers.

Counsel for the local authority also drew attention to the fact that Dr Camden-Smith’s report emphasised the critical involvement of the Special Support Team and the need for them to work collaboratively with NA’s carers to develop and implement a Positive Behaviour Support plan.

Counsel for NA via the Official Solicitor (Arianna Kelly)  said there were some concerns about Dr Camden-Smith’s findings (“some of which contradict each other”), including what I understood to have been Dr Camden-Smith’s suggestion “that there might be potential benefits to NA of entering the prison system”.  This, said counsel, would be “an incredibly damaging and harmful environment for NA and one that we have been trying to avoid for her”.  A pre-trial hearing concerning the criminal charges against NA is coming up shortly and the Crown Prosecution Service are still deciding on the charges.  Counsel expressed concern that the “real focus of this case” should now be on the fact that  NA is “fast turning 18”, and from age 18 she can no longer stay in the annex to the children’s home where she has been detained for the past five months.  “It is utterly imperative that clear plans are in place for after her 18th birthday”.  

Counsel for NA’s mother (represented by Mungo Wenban-Smith)  raised questions about contact, saying that NA wanted contact with her mother and other members of her family before Christmas.  The mother’s main concern in terms of the broad direction of travel of the case was about placements a long way from the family home which would make contact difficult.

Judge’s questions and ex tempore judgment

The judge was clearly concerned about what was (and wasn’t) happening in this case.

He referred to an earlier “cri de coeur” from the local authority to escalate the case to the Children’s Commissioner back in September (I didn’t attend a September hearing and am not sure what this referred to).  He asked “Was that done?”  Counsel for the local authority said it had not been done: “Learned judges did express their dismay as to the situation, but nothing further happened”.  

It’s been 5 months now – forgive my pessimism that we may be in the same situation in February at the next hearing”, replied the judge.  He suggested informing the Secretary of State for Education

The local authority has long said it’s crying out for help….Every possible route to finding a solution for this young and incredibly vulnerable woman is needed”, said counsel for the local authority.

The judge asked how much it was costing to keep NA in her current, unsuitable, accommodation and was told it currently costs £60,000 per week, which counsel for the local authority described as “a staggering cost which has come about through there being a complete lack of alternative resources”. 

The judge then gave a brief oral judgment.  

He authorised the continuing deprivation of NA’s liberty in the (unsuitable) placement where she’s been for more than 5 months.  This was not a case, said the judge, where he was “so perturbed by the current placement that I’d consider not authorising her placement there.  It has provided a degree of stability”. 

He did however feel that the toll on the care staff and the social worker was “beyond that which they should reasonably be expected to bear” and wanted “publicly and sincerely to thank them for all that they’ve done and continue to do for NA”. 

The judge also made a “respectful request” for information and documents from the overseas country where NA grew up in the hope that these might assist mental health professionals in understanding and treating NA.

The local authority had, he said, “… invited the Court to escalate the matter to the Department of Education and the Children’s Commissioner.  This case is reflective of a national crisis.  Support from central government is needed.  As far as I’m aware, neither were informed or provided with information.  It seems to me that now that should happen”.

He  gave permission for relevant case papers to be disclosed to NHS England and to the Secretary of State for Education “with a view they each are invited to provide information and witness statements to the Court”.  

The next hearing will be held (remotely) on 24th February 2022.

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

Photo by Johnny Cohen on Unsplash

A mother abroad and a family dispute: Part 3

By Kristy Regan, 6th January 2022

This long-running case (COP 13677853) concerns Mrs P, an 80+ year old widow who’s been living in a European country at an unknown address with one of her daughters, “Kim” (all names are pseudonyms), a litigant in person.  

The applicant is Mrs P’s other daughter, “Louise” (represented by Sarah Haren  of 5 Stone Buildings).  

According to counsel for Louise, Kim had taken Mrs P “in a surreptitious way” and with “no prior notice” from England to a European country where they remained at the point of the first hearing, and “within weeks of arriving in [Country] Mrs P’s property was placed on the market” by Kim, under power vested by a Lasting Power of Attorney for property and finance over Mrs P.  This led to Louise feeling “deeply concerned”.

Louise had made an application to the Court for an order to return Mrs P home to England, to preserve her property until her capacity to make her own financial decisions is determined, and to suspend the powers under the LPA.

I’d watched this case back on 31st December 2020 before Mr Justice Peel and blogged about it here.  At that hearing, Kim reported that her mother’s house had been put on the market and an offer had been accepted – she said by Mrs P, although she herself had dealt with all the calls and paperwork for the house sale.

It was unclear whether or not Mrs P had capacity to manage her own affairs.  The judge did not make any declarations about her capacity or the LPA but agreed part of the order: namely to preserve the property until at least the next hearing. He kept emphasising that the aim was to preserve the “status quo” while further directions are considered. 

A subsequent hearing (on 11th January 2021) was blogged by Daniel Cloake here. At that hearing (before Mr Justice Cohen), Kim had supplied a “curious document” purporting to assess her mother’s capacity to make her own decisions about her property and affairs. This did not, said the judge, avoid the need for a court-appointed assessment of capacity, and he made an order for this to be carried out by Mrs P’s social worker and GP.  The judge also made orders for Louise and her mother to have contact twice a week.  There was also some indication that the parties might agree to mediation.

The hearing I observed and am reporting on here was on 23rd November 2021, nearly a year after I first observed a hearing in this case.

The hearing

I gained access to the 10am hearing at 9.58am. It was a strange experience as there was only myself and a court official there, and I was asked which parties were attending! It was certainly not what I was expecting and quite perturbing. I waited with camera and microphone off for a good half an hour before people started to arrive. The judge’s clerk when naming participants also directly introduced me as a public observer and checked that people knew I was there. This was a departure from my last observation, where I was totally ignored, and it definitely added to the sense of voyeurism. In my notes I have written “awful, tempted to press leave meeting”.

The case today was being heard by Mrs. Justice Theis and there was a helpful round of introductions. I have again used the pseudonyms Louise and Kim, for the applicant and respondent. The only people who were invited to leave their cameras on were Mrs. Justice Theis, Sarah Haren QC (representing the applicant Louise), Ruth Hughes (representing Ms P via the Official Solicitor (OS)), and Kim (who was again a litigant in person).  

At the start of today’s proceedings, which turned out to be a pre-trial review, Ms Haren helpfully provided an introduction and update, which included reference to the transparency order (I haven’t seen a copy of this).  

From this introduction it was clear that events have moved on considerably. 

Mrs P has been living back in England with Louise since September 2021. She has been visited by an agent for the Official Solicitor and is receiving medical treatment for her health conditions. A professional deputy has been appointed to manage Mrs P’s property and affairs. 

I have absolutely no idea how Mrs P came to return to England, and at a few different points in today’s proceedings there was opaque references to not “raising the temperature1 and “not wishing to cause upset”. My take on this was that none of the parties wished to go over the matter of how Mrs P came to return to England again, to avoid causing emotions to rise in the room. 

The proceedings

The hearing today was referred to as a pre-trial review. The website www.justice.gov.uk describes a pre-trial review as being held if: 

“the case is complex or the trial is expected to be lengthy. The aim is to make sure the trial will proceed efficiently, particular areas of dispute being identified and narrowed down as far as possible.”

The aim of today appeared to be to plan the final hearing which would determine where Ms P should live long term – unless she is found to have capacity to make this decision herself. All parties appeared to agree that it was unlikely she does have capacity for this, but a number of reports are awaited; one from Mrs P’s doctor, one from independent expert Dr Chris Danbury, and one from an Independent Social Worker (ISW).

Kim, again acting as a litigant in person, submitted a letter yesterday to the Judge which was referenced in the proceedings. I gleaned from the discussion that this document referenced financial abuse and historic concerns, and also named individuals who Kim wants to call as witnesses in the hearing. 

All parties were asked by Mrs. Justice Theis to agree on the focus of the hearing. This was agreed by counsel for Louise and for Mrs P to concern whether it is in Mrs P’s best interests to live in England or abroad with Kim, and arrangements for contact (presuming Mrs P lacks capacity). Kim also agreed with this focus but said she wants the case to be presented “fairly” and with the opportunity for witnesses to be heard. 

From an observer perspective, the issue of witnesses seemed to be the area causing the parties to feel that the case may not proceed efficiently. Mrs. Justice Theis said that a lot of the witness statements appear “historical and not relevant to the current situation” and that the Court needs to deal with the current evidence. She suggested the parties produce a list of witnesses after the reports are completed, and if there is a dispute about this then she will deal with this “on papers” before the hearing. 

There then commenced a long discussion about a timetable for reports and responses, before the final hearing was agreed to take place on 10th and 11th February 2022. 

Highlights of this discussion included the barrister for the OS stating that there is a possibility that it would be in Mrs P’s best interests to move back abroad with Kim, therefore they didn’t want too much time to elapse. 

The timings of the doctors and ISW reports were also discussed, and the building in of a ‘round table’ or ‘shuttle diplomacy’ to be convened by the OS. I surmised this was a type of mediation which occurs outside of the Court room in a bid to reach agreement before the hearing (google confirmed this view).

A timetable was set out by the Judge and she asked whether the parties agreed it. Counsel on behalf of Louise, felt it was “tight, but should work” and counsel for Mrs P concurred. 

Mrs. Justice Theis then went to Kim and carefully outlined the whole timetable again, ensuring she understood what was planned. Kim’s response was to ask again if the Judge had read her letter (submitted yesterday). Mrs. Justice Theis said she’d read it “slowly and carefully”.

Curveball

It was at this point Kim threw in what I perceived as a total curveball. 

She stated that she was not seeking her mother’s return. Kim said she feels she has “handed the baton on” to Louise (who she kept referring to as her mother’s “other daughter”, rather than as her sister). Kim said that her mother had a lovely time with her abroad, but she cannot ask it of her to travel back. Kim said her mother needs to be made comfortable and her wishes to be respected. Kim went on to say that when her mother had been living with her, she’d been disorientated to place. 

I think it’s safe to say that as an observer I was not expecting this at all! 

Not knowing some of the events surrounding the case, such as how Mrs P came to be back in England, I couldn’t say whether this was an expected or unexpected turn of events. I was interested to know however how the parties would respond.

Counsel for Mrs P said that sometimes Kim suggests she is happy for her mother to remain in England and at other times this changes. 

Again, the subject of how Mrs P came to be back in England was obliquely referenced, with the comment about not wanting to “ raise the temperature”.  

Counsel for Louise advised that if Kim is not going to provide an option for Mrs P’s return, then there isn’t an alternative option for the court to rule on. In this case the applicant would not be happy to go ahead with the two-day hearing, due to the expense to Mrs P from experts and the hearing itself. 

Counsel for Mrs P pointed out that the OS may recommend that it is in Mrs P’s best interests to return to live with Kim and they don’t want to prejudice this potential outcome. 

The response to this from counsel for Louise was that it was hard to see how the OS could come to a different view if both sisters were in agreement about Ms P’s best interests. 

I did find it curious that the Official Solicitor suggested that they could find it in Mrs P’s best interests to return abroad if the option was not actually ‘on the table’. In the case of  N v ACCG [2017] the Supreme Court confirmed that the Court of Protection could only decide between ‘available options’ and jurisdiction is limited to decisions Mrs P could make if she had capacity. If Kim had withdrawn the offer of care for her mother, then in my view, there is no alternative and no dispute (short of an argument that Mrs P should be cared for elsewhere, such as a care home). I felt that perhaps the main issue was that Kim may later change her mind.

Mrs. Justice Theis advised that it was now the Court’s job to make a decision. That it involves striking a balance to see if a decision can be reached while not draining financial and emotional resources. The Judge felt it would be worth having a round table when the doctor’s report comes in (as it is already expected). Counsel for Mrs P felt they also need the ISW report. 

The Judge requested a meeting in December to confirm the parties’ positions. This is before the ISW report is due. If there is agreement then the Court can be advised via a paper application and the hearing can be abandoned. As the Judge pointed out, there are decisions being made about best interests all around the country, but they don’t end up in Court. If, however, agreement is not reached, then the parties can revert to the timetable previously discussed. 

Mrs. Justice Theis asked the applicant counsel (for Louise) to draft an order today outlining the positions. She advised Kim that is important for her to consider her final position away from the Court, but she “strongly encourages and supports” the parties to come to an agreement. 

The Judge’s final words were that if agreement is reached “emotional energies can be released for providing care and support for your mother, rather than being focussed on court proceedings”.

As an observer I sincerely hope that agreement can be reached, for the sake of all parties. 

Kristy Regan is Senior Lecturer in Social Work at the University of Sunderland who previously worked in Adult Safeguarding for 8 years, as a Senior Social Worker then Team Manager.  She is also a COP Visitor. She tweets @kristyregan13

1. All quotations are as accurate as possible but as we are not allowed to audio-record hearings, they are unlikely to be verbatim.

Photo by Cameron Venti on Unsplash

Reflecting on Re MW and Advance Planning: Legal frameworks and why they matter

By Clare Fuller, 4th January 2021

Uncomfortable questions were raised for me when I witnessed the hearing (COP 13861502 Re MW) on 13th December 2021 before Sir Andrew McFarlane, President of the Family Division (also blogged here: “Patient dies in hospital as Trust fails to comply with Mental Capacity Act 2005”).

When I joined the hearing, I was unaware that the lady at the centre, Mrs W, had sadly died the previous evening.

Learning this, in the opening minutes of the hearing, added an emotive element and changed the hearing from a decision-making process about Mrs W’s future to a more unusual “lessons to be learned” situation.  

It was, as counsel said “a profoundly sad time” for the family, who had also experienced the death of their father just twelve days earlier. 

As the case opened, we learned that the Trust (the London North West University Healthcare NHS Trust) had commenced a full Serious Untoward Incident (SUI) investigation and would be referring Mrs W’s death to the coroner. 

The Court heard from Mr Hallin (who represented Mrs W via the Official Solicitor) that “it is hard to accept there may not be other cases which have not come before the Court” and listening to the case I agreed. 

The case was originally brought to court by the family of Mrs W when they were told that clinicians had withdrawn Mrs W’s nasogastric tube. The nasogastric tube ensured that Mrs W received nutrition and hydration, and had been in place since around 23rd November 2021.  After it was withdrawn, her hydration was provided by an IV route, but she received no nutrition other than some sugars dissolved in her hydration.  

Details of the case as disclosed in earlier hearing on 10th December 2021 can be found here and (in a report on this same hearing) in this blog post.

Why this case interested me

I promote proactive Advance Care Planning, conversations about What Matters Most  and formalising planning through tools such as Lasting Power of Attorney. 

I advise people that appointing an Attorney, via a Lasting Power of Attorney, is part of normal life planning.  I do so in the belief that this provides a legal framework ensuring that decisions about whether or not to consent to treatments can be made by people we choose if our capacity to make independent decisions is lost. 

The hearing demonstrated that, without professional understanding and good organisational practice, frameworks for planning ahead can fail. 

There are two specific legal frameworks at the heart of this blog, each of which I’ll address in turn. They are (1) Lasting Power of Attorney; and (2) Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) decision-making.

1. Lasting Power of Attorney

A  Lasting Power of Attorney  is a legal document that enables a someone to nominate a person or persons to act for them if they ever lose capacity to make decisions for themselves. 

There are two Lasting Power of Attorney forms, one for Health and Welfare and one for Property and Finance. 

In a previous blog, I have focused on Property and Finance decision-making; here the issue is Health and Welfare.  However, the basic principles that professionals need to understand are the same for both. 

Mrs W had nominated one of her sons and one of her daughters as attorneys for a Health and Welfare Lasting Power of Attorney.  She  selected Option A in the Lasting Power of Attorney application. This meant that Mrs W gave her son and daughter authority to give or refuse consent to life sustaining treatment.

From the downloadable form to create and register your LPA for Health and Welfare on the government website

Provision of nutrition via a nasogastric tube is a life sustaining treatment and included as an  example in  the formal guidelines for making a Lasting Power of Attorney:

By not consulting with Mrs W’s attorneys the Trust failed to recognise their legal role.  

The lack of communication has been highlighted as a failing for which the Trust has apologised. 

The law is clear on withdrawal of clinically assisted nutrition or hydration (CANH) following the Supreme Court case of An NHS Trust v Y and another [2018] UKSC 46  and the subsequent publication of national Guidelinesby the British Medical Association and the Royal College of Physicians, endorsed by the General Medical Counsel.

GMC guidance (since 2010) has been clear that doctors must seek a second medical opinion where a decision is made not to start, or to withdraw, CANH in a patient who is ‘not expected to die within hours or days’ (as in this case). The guidance is reiterated in Re Y and in the national guidelines.  

Celia Kitzinger and  Jenny Kitzinger comment on the “apparent disregard for the fact that the patient has a son and daughter who she designated as her health and welfare attorneys. She assigned them authority over consenting or refusing consent to life-sustaining decisions, and backed this up with a statement of preferences (or instruction) on the form appointing them.clinicians – If life-sustaining treatments were on offer, then the decision-makers were the son and daughter, NOT the clinicians – and it was up to them to make the decision as to whether it was in her best interests to continue with CANH or not.

Guidance published by the BMA in 2018 for  clinically assisted nutrition and hydration (CANH) and adults who lack the capacity to consent clarifies the role and importance of a Health and Welfare attorney: “Legally, family members cannot give consent to, or refuse treatment on the patient’s behalf unless they have been formally appointed as a health and welfare attorney“.

The decision-making process is summarised in a useful flowchart in the guidance. The flowchart demonstrates explicitly the hierarchy of decision making in a person who lacks capacity. Taking precedence is an Advance Decision to Refuse Treatment (ADRT), followed by a Health and Welfare attorney with relevant power. 

I find this flowchart invaluable in demonstrating the importance of Advance Care Planning, and a stark reminder that without an ADRT or Power of Attorney a family member does not have authority to consent to or refuse treatment for their loved one. One positive action that might result from this case and associated publicity is greater awareness of Lasting Power of Attorney and ADRT.

Witnessing the hearing it appeared that the failing to consult with attorneys was not the action of a single person, rather a systematic failure. 

This made me question the professional understanding of Lasting Power of Attorney within the Trust. 

As a Registered Nurse, I have completed mandatory Mental Capacity Act (MCA) Training since the Mental Capacity Act was introduced in 2005. I have worked in a number of different NHS organisations and Trusts and draw on experiences from them all. Training invariably included awareness of Lasting Power of Attorney, but specific detail was absent.  My learning and understanding of Lasting Power of Attorney has been gained through professional curiosity and my role as a Lasting Power of Attorney Consultant

With an awareness of the general lack of professional understanding about Lasting Power of Attorneys I have previously blogged about how to check the validity of an Lasting Power of Attorney here  and in further detail here . 

The key points I summarised for clinicians checking a Lasting Power of Attorney: 

  • Clarify which Lasting Power of Attorney has been made – Health and Welfare, Property and Finance or both.
  • Be aware that you need to know more than if someone “is” an attorney; for Health and Welfare LPAs you need to understand the detail of the LPA, specifically if option A or B has been selected for life sustaining treatment, and any instructions the donor has given to the attorneys, or wishes and preferences they have expressed, on the form.
  • Ask to see the original Lasting Power of Attorney document (for LPAs registered pre- 17.7.2020).  The picture below shows the stamp and perforated confirmation you would expect to see on a registered document.
what does a valid LPA, EPA or deputy order look like?
  • If the LPA was registered on or after 12.7.2020 the attorneys and donor will have been issued with an activation key (a number) to create an on-line account. The online service enables people to:
    • view a summary of the LPA
    • keep track of people or organisations given access to the LPA
    • see how people named on the LPA are using the service
    • request or replace an activation key

The LPA reference number will be required in addition to the activation key. This is a significant improvement to the efficiency of checking LPAs. Full details of the service can be found on the Gov.UK use a Lasting Power of Attorney page.

  • Clarify how the attorneys can act if there is more than one attorney; this could be jointly (together) or severally (separately) – and might differ for different decisions.
  • An LPA for Health and Welfare can ONLY be used when the donor has lost capacity to make the specified decision. When making the LPA for Health & Welfare the donor will have made an important decision whether or not to give their attorney(s) authority to  give or refuse consent for life sustaining treatment 
  • An LPA for Property & Finance can be used EITHER as soon as it is registered or only when the donor loses mental capacity. The donor will have selected which option they wanted when making their LPA.

In this hearing, Peter Mant  (Counsel for the Trust) questioned why events “took the turn they did” and asked “what can be learned and how can proper respect be given to Power of Attorney and to those that have this in their favour.”  

I would echo this statement and be interested to find out how the Trust will be supporting clinicians in better understanding of Lasting Power of Attorney in future.

2. Do Not Attempt Cardiopulmonary Resuscitation

Moving to the second framework, Do Not Attempt Cardiopulmonary Resuscitation (DNACPR), there is a similar lack of evidence that the correct process was in place for Mrs W.

The attorneys had been told that Mrs W was not for cardio-pulmonary resuscitation, and they did not agree with this.

As with Lasting Power of Attorney, DNACPR is underpinned by the Mental Capacity Act . Another key legal framework with relevance to DNACPR is the Human Rights Act 1998.  Both these acts are referenced in the Resuscitation Council UK guidelines decisions relating to cardiopulmonary resuscitation 

Cardiopulmonary resuscitation or CPR is an active intervention or treatment aimed at restarting the heart in someone who has experienced a sudden cardiac arrest. The important word is treatment; like any medical intervention, the benefit and burden must be balanced. CPR is not an appropriate action for someone who is approaching the end of life and, contrary to popular belief, is not an action that can be requested.  CPR can however be refused by an individual with capacity or by an attorney who has been granted option A decision-making via a Lasting Power of Attorney. 

The NHS information  Do not attempt cardiopulmonary resuscitation decisions updated in March 2021, makes this explicit with the statement: “It is important to understand that nobody has the right to demand CPR, so the decision may not change if there was a good clinical reason for it (for example, your heart, lungs or other organs are struggling to work). The doctor should explain their reasons and ask about your wishes and preferences“.

At the hearing for Mrs W on 10th December 2021, the applicant, represented by  Katie Gollop QC , requested a review of the DNACPR decision:

The son also wanted the DNACPR removed (again on an interim basis), disclosure of medical records, and an independent second opinion from an expert.”

DNACPR is an emotive subject. I have seen first-hand,  and have personal experience of, DNACPR conversations handled poorly with little professional understanding. It is never appropriate to ask “do you want your mother resuscitated”: the decision to attempt CPR is a medical one. What is always appropriate and indeed part of the legal framework, is the necessity to consult with a person about the DNACPR decision. 

The ruling concerning Janet Tracey (R (Tracey) v Cambridge University Hospitals NHS Foundation Trust & Ors [2014] EWCA Civ 822) concluded that: “there had been an unlawful failure to involve Mrs Tracey in the decision to impose the first DNACPR notice, in breach of Article 8 ECHR for the following reasons:

  1.  Since a DNACPR decision is one which will potentially deprive the patient of life-saving treatment, there should be a presumption in favour of patient involvement. There need to be convincing reasons not to involve the patient.
  2. It is inappropriate (and therefore not a requirement of Article 8) to involve the patient in the process if the clinician considers that to do so is likely to cause her to suffer physical or psychological harm. Merely causing distress, however, would not be sufficient to obviate the need to involve the patient.
  3. Where the clinician’s decision is that attempting CPR is futile, there is an obligation to tell the patient that this is the decision. The patient may then be able to seek a second opinion (although if the patient’s multi-disciplinary team all agree that attempting CPR would be futile, the team is not obliged to arrange for a further opinion).”

The later Winspear judgment Elaine Winspear v City Hospitals Sunderland NHS Foundation Trust [2015]EWHC 3250 (QB) in 2015 made clear that the principle of consultation applied both in the presence and absence of capacity:

As Blake J noted: “[t]here is nothing in the case of Tracey or the Strasbourg case law to suggest that the concept of human dignity applies any the less in the case of a patient without capacity” (paragraph 45).  He therefore accepted the claimant’s case that the core principle of prior consultation before a DNACPR decision is put into place on the case file applies in cases both of capacity and absence of capacity.”

There would appear to have been be a similar lack of consultation or discussion regarding DNACPR for Mrs W and I hope this will be included as part of the SUI.

What next? Organisational accountability

Ensuring correct frameworks and best practice requires appropriate education.  Equally important is a monitoring and assurance element.  

The shocking feature for me in attending the hearing is what appeared to be a systematic failure in process. 

I am left wondering how decisions such as DNACPR and CANH are monitored within the Trust, how decisions are audited and how best practice can be assured. 

It is the details of this case that matter so much, and the apparent lack of reference to legal frameworks, alongside a lack of communication with a family.

 I noted that the family were fighting for the interventions not as a cure or believing their mother’s condition was reversable, but so she could “move to home and end her days there”. 

I find it profoundly sad that there is no evidence of proactive Advance Care Planning and eight years after the Janet Tracey ruling we are witnessing yet another family who have not been included in decision making. 

My deepest sympathies are with Mrs W’s family. They are contending with grieving for both parents, and with an investigation into the death of their mother.

 I remain mindful that there is a very human story behind the facts of the case and respectful of the opportunity I had to be in Court to witness it. 

My sincere wish is lessons are indeed learned by this Trust – and beyond. 

Clare Fuller RGN MSc is a registered nurse with a career dedicated to Palliative and End of Life Care. She is an advocate for proactive Advance Care Planning and provides  EoLC Service Analysis and bespoke EoLC Education. Clare hosts Conversations About Advance Care Planning. She is also a  Lasting Power of Attorney Consultant and director of Speak for Me LPA. Connect with Clare on Twitter @ClareFuller17 

Photo by Benjamin Elliott on Unsplash

Patient dies in hospital as Trust fails to comply with Mental Capacity Act 2005

By Jenny Kitzinger and Celia Kitzinger, 29th December 2021

This hearing (COP 13861502) on 13th December 2021 before Sir Andrew McFarlane, President of the Family Division, concerned the failure of London North West University Healthcare NHS Trust to comply with the requirements of the Mental Capacity Act 2005 in relation to the care of a brain-injured woman in her 70s, Mrs W[i]. It was the second hearing in this case, the first one having taken place on 9th December 2021.

The dispute at the centre of the case began when clinicians removed Mrs W’s nasogastric tube on 10th November 2021 without any consultation with her health and welfare attorneys (one of her sons and one of her daughters).

When the health and welfare attorneys were informed the following day, they said that they considered it would be in their mother’s best interests to receive nutrition, and repeatedly asked the Trust to reinstate it. 

The Trust continued to withhold nutrition from Mrs W, although they did provide hydration (with dextrose and saline) via an IV line.

Then, on 8th December 2021, they also withdrew artificial hydration, and only restarted it after representations made by solicitors representing one of the health and welfare attorneys.

Although the Trust knew that the attorneys did not agree with the decision to withhold nutrition (and hydration) from Mrs W, they did not make an application to the Court of Protection.

Mrs W’s son was forced to obtain legal aid and instruct solicitors to issue an application and bring the matter before the court on an emergency basis. It was first heard on the urgent hearings list before Mrs Justice Arbuthnot on Thursday 9th December 2021 (blogged earlier).

At the beginning of this second hearing (on 13th December 2021) we learned that Mrs W had died the previous evening.

Counsel for the Trust (Peter Mant of 39 Essex Chambers) offered the family his “deepest condolences”. 

The Trust assured the court and the family that they were taking this situation very seriously. They outlined the following steps:

  • They had put in place arrangements to undertake a full Serious Untoward Incident (SUI) investigation into the circumstances surrounding the withdrawal of Mrs W’s nasogastric tube on 10th November 2021.
  • They would refer Mrs W’s death to the coroner.
  • The Trust Board, including the Chief Executive and Medical Director had been informed about the case and were fully aware of the concerns that had been raised.
  • The outcome of the SUI (and any inquest if the coroner decides to hold one), including any recommendations arising out of the investigations, will be considered and acted upon at Board level.

The first hearing (9th December 2021)

We have given a detailed account of the hearing on 9th December 2021 before Mrs Justice Arbuthnot, in our earlier blog, which focuses particularly on the legal role of Mrs W’s son and daughter as her health and welfare attorneys. 

We also noted that the Trust had offered (as it says in the Order from the hearing) “a sincere apology in open court to Mrs W and to her family”. 

They apologised for two errors: first, that the views of the family members/attorneys “were not fully elicited prior to removal of the nasogastric tube”; and, second ,“that an application to the Court of Protection was not made”. 

At that hearing it was agreed that the Trust would ensure that no further medical treatment – including hydration – was withdrawn from Mrs W while the Court was seized of the matter (i.e. retained jurisdiction over the case).

The judge also declared that Mrs W lacked capacity to conduct proceedings or to make decisions about her treatment, and appointed the Official Solicitor to represent her best interests (taking over at this point from her attorneys). 

The Trust agreed to take over the role of applicant for the next hearing, with the Official Solicitor as first respondent, and Mrs W’s son as second respondent.

The court appointed an independent expert, consultant intensivist Dr Chris Danbury, to prepare a report on Mrs W’s nutrition, diagnosis, condition, prognosis and treatment options and to provide the report to all parties by 10am on 13thDecember 2021, the date of the next hearing.

The second hearing at 2.00pm on 13th December 2021

The hearing opened with a brief summary of events so far from Peter Mant (counsel for the Trust). He covered the events summarised above, and also the upshot of the report that had been received from Dr Chris Danbury, the independent expert. 

This answered some of the questions we’d been left with after the hearing on 9th December about Mrs W’s condition and the nature of the clinical options available.

According to Peter Mant, Dr Chris Danbury had reported that Mrs W was not in a prolonged disorder of consciousness (a diagnostic term erroneously applied to her in the hearing the previous week). She was stable, when he saw her, and although she was in the end stages of her life, and prediction is difficult, he had given her a prognosis of weeks or maybe even months. He had recommended reinstating the nasogastric tube, and then inserting a PEG, with a view to developing a care package that would enable her to spend her remaining time in the comfort of her own home (presumably an option her LPAs supported and believed that Mrs W herself would have wanted). 

Sadly, she had then died the following evening in hospital.

The judge said that this was a profoundly sad time for the family, who had also lost their father less than two weeks earlier. 

The judge pointed out that the jurisdiction of the court comes to an end with the death of the patient, but that the hearing was proceeding, despite Mrs W’s death, “because of the need for some investigation into what happened”. 

The family, said Katie Gollop QC on behalf of Mrs W’s son, take some comfort from the fact that this hearing is happening and that “other people, at a very high level are taking an interest”. Mrs W’s daughter, she said, had told her she “will never get over how her mother died”. 

Peter Mant acknowledged the concerns and ran through the steps the Trust was taking in response (as outlined above, i.e. the Serious Untoward Incident investigation etc). Obviously, he said, “apologies and expressions of regret can provide only limited comfort to the family. We will make inquiries and will act on the findings of the investigation and make any changes necessary”. 

The judge commented that statements from the patient’s son and daughter would be “a positive help to the investigation” because they approached what had happened “in a measured way, with insight and intelligence about the issues involved”. 

Not just a one off?

It was clear that the family wanted the investigation to go beyond what happened to Mrs W to consider wider practices. Katie Gollop QC said the family “feel other people are in danger” and this possibility was certainly recognised as worthy of investigation by the judge and by the Official Solicitor.

There’s a concern”, said the judge, “on reading the papers, that the family are right that this may not be a ‘one-off’. The procedure [followed by the consultant in Mrs W’s case] may be seen as entirely in accordance with their ordinary practice. Having read the statement of the consultant, there wasn’t any indication that what was undertaken was in any way out of the ordinary.”  

Conrad Hallin (representing Mrs W via the Official Solicitor) said: “The Trust will investigate this incident, but it’s hard to accept that if this approach was taken to this case, there may not be other cases to which a similar approach was taken”.

The judge said, “there is a legitimate concern that this has happened, or could happen, to other patients. I anticipate that the NHS Trust will be very alive to that”. 

In particular, the Trust seemed completely to have ignored the role of the health and welfare attorneys, who were Mrs W’s ‘decision-makers’ by law.

Katie Gollop QC: There’s little point people making Lasting Powers of Attorney if they have no traction at all. There was no mention of the Lasting Powers of Attorney at all in the doctor’s statement.

Judge: I am being measured in what I say, but I had been struck by that.

The judge later reflected on the need to investigate “how a lasting power of attorney is acknowledged by the hospital and proper respect given to the decision-making role of those who have a power of attorney in their favour”.

As so often in these cases, there was mention of “lessons to be learned”. 

We hope that these “lessons” and the outcome of the inquiry more broadly will be made publicly available. 

“Requires Improvement”

According to the Care Quality Commission (CQC), London North West University Healthcare NHS Trust is one of the largest integrated care trusts in the country, bringing together hospitals and community services across Brent, Ealing and Harrow. It operates hospital services from three main hospital sites, as well as providing a range of community services in the three Boroughs. The trust employs more than 9,000 clinical and support staff and serves a diverse population of approximately one million people. 

This Trust has been rated by the CQC as “Requires Improvement” at each of the last two inspections, most recently in 2019. Comments included:

  • Training compliance rates for deprivation of liberty safeguards was poor among medical staff. Some staff had a variable understanding of the Mental Capacity Act (MCA) and deprivation of liberty safeguards (DoLS).
  • We found that some trust policies were out of date.
  • In reviewing trust documentation on risk, serious incident investigation, review of deaths, duty of candour, complaints etc. and action plans arising, we noted a general good standard of documentation but a continuing lack of certification of completion of improvement or sign off from actions identified in many cases.

This is concerning, since it seems likely that lack of understanding of the Mental Capacity Act, and possibly also out-of-date policies, may have contributed to the problems in Mrs W’s treatment. And if previous incidents and complaints have not led to “completion of improvement or sign off from actions identified”, this does not augur well for “lessons to be learnt” from this case.

The public has a right to know what went wrong in this case, and how the Trust proposes to avoid anything like this happening again. 

We will be seeking information from the Trust about the outcome of investigations and the improvements they are putting in place in the New Year. 

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

Celia Kitzinger is Honorary Professor in the School of Law and Politics at Cardiff School of Law and Politics.  She also co-directs (with Professor Jenny Kitzinger) the Coma and Disorders of Consciousness Research Centre and (with Gill Loomes-Quinn) the Open Justice Court of Protection Project.  She tweets @KitzingerCelia


[i] At the family’s request, reporting restrictions on naming the people involved in this hearing were lifted. We are, therefore, permitted to name Mrs W and her family members. However, the family has not yet made any public statement about how Mrs W died or the concerns they had. We have therefore chosen not to identify Mrs W or her family here, in order to give the family the opportunity (after the funeral) to put this information into the public domain themselves if they wish to, in their own way. We will update this blog, with names and links to whatever the family say, at some point in the future or link to media or other public reports of the case if the family is named there.

Photo by Jacinta Christos from Unsplash

Disputes about COVID vaccination should be rapidly referred to the Court

By Angus Mackenzie, 23rd December 2021

I am a retired Intensive Care consultant, working part time for the Welsh Medical Examiner Service, and in my former life was involved in a few applications to the Courts for declarations in relation to patients under our care, though these pre-dated the (new) Court of Protection.

I observed this Court of Protection hearing because in my former life I was involved in teaching doctors about the Mental Capacity Act 2005 and related areas and am keen to see all doctors reaching the high standards set by clinicians who have taken the time to understand their legal and ethical responsibilities.

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

He is not able to express himself verbally and his lack of capacity in relation to healthcare does not appear to be disputed. 

He also requires dialysis for kidney failure, for which he attends hospital three times a week.

The Clinical Commissioning Group responsible for MK’s care (represented by Clare Hennessy of Serjeants’ Inn Chambers) had made an application for MK to receive both the first and second doses of COVID-19 vaccine, and subsequent booster doses, as applicable.

The man at the centre of the case, MK, was represented (via the Official Solicitor) by Winsome Levy of Field Court Chambers. 

MK’s mother is a litigant in person but was not present at today’s hearing due to illness.

The local authority (represented by Shadia Ousta Doerfel) is also a respondent and does not contest the application nor the declarations and orders sought by the applicant.

In this hearing, as in others I’ve been involved in, the attention to detail and the patient-centred nature of proceedings was impressive. 

Delay

Previous Open Justice Court of Protection Project blogs (e.g. “Covid vaccination and a Christmas visit“)  have observed that the Court of Protection is deeply concerned about the length of time which often passes between an issue being identified and an application being made to the Court. 

District Judge Mullins took time to remind the Court of the problem of delayed applications, identifying, in this case, earlier missed opportunities.

Looking through the chronology of the case, the judge said.  “It’s not my role to point the finger at any individual or organisation, but it doesn’t make comfortable reading.  Vaccination was first considered in February or March 2021 and here we are in December and there hasn’t been any resolution –  and no vaccination.  And now he has COVID. Though he seems to be doing relatively well?[1]

After being reassured that MK is doing well despite testing positive for COVID (and having a cough), the judge was at pains to point out that “at First Avenue House – and I’ve checked with the senior judge – if an application comes in concerning a dispute about vaccination, one of our technical experts will deal with it, and it will be referred to a judge quickly.  The arrangements in the regional hub courts are similar – the court staff are alert to the need to progress vaccination applications quickly”.  

The key point the judge reiterated was “if there’s any doubt – make an application.  I would like the relevant people to know we are ready to receive applications and ready to deal with them quickly. The threshold for making applications is low.  In cases such as this, where MK’s mother was objecting, and does object, there doesn’t seem to be any doubt that there should have been an application sooner.  It doesn’t really matter who brings the thing to court: the important thing is to get the application made, and get the Official Solicitor involved, so we can address the specific case”.  

The  judge’s concern about delay was reflected by counsel for the CCG who explained that “nobody was quite sure of the pathway to escalate it, but I believe that’s been remedied now, so the local authority and clinical commissioning group will know how to escalate in future”.  Counsel for the local authority said they were hosting an event in January at which they would “disseminate the court’s view and reiterate it to all participant local authorities who are attending as well”. 

The Medicines and Healthcare Products Regulatory Agency gave approval to the Pfizer-BioNTech vaccine on 2nd November 2020; it has been available in quantity for most of 2021. The Bloomberg tracker reports that more than 8.82 billion vaccinations had been administered worldwide by 22nd December 2021.

I am struck by the contrast between what happens when patients in hospital are prescribed drugs which are not stocked or difficult to obtain. Often, considerable effort is expended in securing and administering supplies, and they can be administered within a day or two. Treating teams need to understand that if a best interests issue like this arises, the Court of Protection expects a sense of urgency and early application for their assistance.

Re-listing the hearing

Today’s hearing was hampered by the fact that both the patient and his mother are currently suffering from – apparently mild – COVID. Hence his mother was unable to take part in proceedings and MK’s vaccination, if it is to proceed, cannot now happen before 13th January 2022. 

This would also allow time for an agent of the Official Solicitor to meet with MK – something which has not yet been possible due to his having contracted COVID-19.

The remainder of the hearing was mostly concerned with scheduling another hearing which allows MK’s mother to attend when she has recovered but does not delay the timetable for vaccination. 

The Court is deeply mindful of the desirability of allowing the clinicians involved in this case to be available for their patients rather than attending hearings, and put a schedule in place to allow for written responses to questions which, it is hoped, may be  sufficient to avoid the GP and the renal consultant needing to attend court.

I do hope I am able to attend the next hearing, provisionally listed for 10am on 10th January 2022, when hopefully the substantive question of whether vaccination is in MK’s best interests will be addressed.

Angus Mackenzie is retired from an NHS Consultant job in Anaesthetics and Intensive Care. He now works part time for the Welsh Medical Examiner Service.  He tweets @anxiousmac


[1] Quotations provided by Celia Kitzinger who also observed this hearing.  Note that they are as accurate as possible but since we are not allowed to audio-record court hearings, they are unlikely to be verbatim. 

Photo by Fusion Medical Animation on Unsplash

Family dispute about life-sustaining treatment: A directions hearing

By Jenny Kitzinger, 22nd December 2021

The hearing I attended on 21st December 2021 before Ms Justice Russell was yet another case which underlines the dangers of not planning ahead for possible future loss of capacity. 

This is what can happen to any of us, at any time, if we are suddenly brain injured, whether from a car crash, assault, cardiac arrest, or any of the other unexpected events which can result in serious insults to the brain. 

I attended this hearing because I was alerted to its broad focus. Once I was observing it, I realised I have some prior knowledge of this case from an earlier point in the patient’s trajectory. In this blog, however I draw solely on information gleaned from the hearing.

Background to the case

At the centre of this case (COP 13862920) is a man in his 40s (“TK”) who, suffered a sudden subarachnoid haemorrhage (a type of stroke) in December 2020. 

Like the vast majority of the people, TK has no Advance Decision (ss. 24-26 Mental Capacity Act [MCA] 2005) or advance statement (s. 4(6)(a) MCA), and has not appointed anyone with lasting power of attorney (ss. 9-14 MCA) for health and welfare. 

This is not a blog full of seasonal cheer – but it might suggest a novel Christmas present. 

After reading this blog, I hope readers will be reminded of why advance planning for a possible future when you might lack capacity to make your own treatment decisions can be a priceless gift to your family (and your clinical team). Relevant documentation is invaluable to those who might one day have to confront decisions about your care. (See the charity, Compassion in Dying, for how to make use of these advance planning instruments). 

During the year since TK’s original injury, his clinical team have been faced with a series of difficult decision about the benefits and burdens of medical interventions for him as an individual. 

His family and fiancé have had to make painful assessments of what TK’s own likely wishes would have been. 

At times, they have been in agreement that TK would not have wanted any ongoing life-sustaining treatment, but that is not the case now. 

They have been catapulted into a hugely difficult conflict, with different views of the right way forward.

His current condition seems to be at the higher end of the Minimally Consciousness State (“MCS +”) – although it is possible he has emerged into consciousness.  I wasn’t entirely clear on this point from the directions hearing but no doubt the expert evidence about his diagnosis and prognosis will be presented in future hearings. Either way he has been left with severe neurological deficits. 

After a prolonged period of hospitalisation and specialist rehabilitation and assessment he now lives in a care home, dependent on 24/7 support and lacking capacity to make decisions about his own medical treatment. 

He is sustained by clinically assisted nutrition and hydration (CANH). 

Some of his family believe that CANH and other life-sustaining treatment should now cease,  on the ground that TK himself would not want it. His fiancé disagrees.

Given the lack of an Advance Decision, all medical treatment (including CANH) need to be decided on the basis of his best interests. 

Given the lack of agreement on what should happen, the decision has been referred to the Court of Protection. 

The hearing 

The directions hearing lasted just 20 minutes. 

The applicant CCG was represented by Vikram Sachdeva of 39 Essex Chambers.

The protected party at the centre of the case, TK was represented by Sophia Roper of Serjeant’s Inn (via the Official Solicitor). 

The NHS Trust that had provided rehabilitation and assessment for TK prior to his being discharged into a care home was represented by Ania Rao.

During the hearing it was agreed that TK’s fiancé and TK’s nephew should be (separately) joined as parties. Neither was present at this hearing and both will be acting as Litigants in Person. 

Plans were also made to disclose information and inform relevant people and deadlines were agreed for lodging relevant (updated) medical evidence and witness statements. 

It was also agreed that, following receipt of such information, the applicant would organise a roundtable discussion between those involved to identify whether there was any scope for agreement or narrowing the issues.

A date for the next hearing was set and it was also agreed that updated position statements would be filed several days before that hearing. 

Costs were reserved, ‘apart from the usual costs order’. 

An unexpected change of circumstances

The routine business of a directions hearing was somewhat disrupted by the news that TK had been admitted to hospital with pneumonia the previous day. 

He’s now receiving IV antibiotics.

I was left wondering how decisions about transferring TK from his care home to hospital and the administration of IV antibiotics had been made given the views of some of TK’s family about what TK would feel about life-prolonging interventions. I wonder whether those charged with TK’s care at present had carefully assessed TK’s best interests taking into account those well-documented views and decided hospital admission was in his best interests nevertheless. I also wonder whether – as I have seen happen in some cases – he might have been transferred to hospital without (or even contrary to) careful best interests assessment and agreed ceilings of treatment. This is, of course, pure speculation: there was no evidence either way discussed at the hearing.

In any event, he was, as Sophia Roper (counsel for TK), pointed out, ‘in a more perilous condition that we thought he might be”. 

This medical emergency may account for the absence from the hearing of TK’s fiancé and his nephew. In any case, it is a stark reminder of how family members in CoP cases are often dealing not only with the demands of legal proceedings but also the crisis of caring for a loved one – whether at home, in residential care accommodation, or in hospital.

TK’s admission to hospital had prompted TK’s fiancé to suggest delaying the hearing into the question of CANH – something the court refused on the grounds that, as the judge made clear: “It is not in TK’s best interests to let the matter lie without progressing it at all”. The judge also noted that she was mindful of the difficulty of scheduling these sort of cases and the possible disruption the current Covid surge might add.

Counsel for TK highlighted the strain on TK’s fiancé and his family and requested that a recital should be recorded “to provide reassurance” to them. This recital included stating that TK will be administered IV antibiotics pending further clinical review on whether these should continue or if he should be for palliative care, and that the timetable in relation to the court process “can be extended if in TK’s best interests to do so.” (This last statement highlights the CoP’s clear focus on the individual at the centre of the case, only taking into account the feelings of P’s family insofar as the individual himself or herself might have done so.)

The recital was agreed with the clarification (suggested by Vikram Sachdeva, counsel for the CCG) that it should specify that if the timetable were to be extended, that would be “by the court’ (making clear where authority for any change of timetable lay).

It was good to see the acknowledgement of the strain on TK’s fiancé and family, and the importance of including them in  proceedings, alongside maintaining the court’s focus on TK’s best interests and on proceeding in a timely manner. This is something that sometimes seems harder to deliver in day-to-day clinical settings. Outside the courts, I have sometimes seen concern for family members (the vocal, emotional presence in the room) apparently trump concern for a patient’s best interests. I have also sometimes seen discussion of best interests in relation to CANH in particular be put on hold – sometimes repeatedly – when patients go through life-threatening infections, and family or clinicians think (indeed sometimes even hope) that a proactive discussion of CANH might become redundant as ‘nature’ might takes its course.

In this court hearing I was left with the impression of a well prepared, careful and efficient hearing, underwritten by a wealth of existing clinical and best interest documentation – all setting the groundwork for the next hearing. 

I am also left with a huge sadness – both for what has happened to TK, and for the dire consequences for his fiancé and family, who are now not only dealing with the grief and trauma of his injury but are also left in this terrible position as they try to do what they believe to be right by him.

The further directions hearing is planned for early 2022, and I will hope to observe it and write an update blog then. 

Meanwhile, the usual plea to anyone reading this – please consider appointing someone you trust to make decisions for you if you were unable to do so in future (the forms to do so are on the government webpage and don’t require a solicitor). Alternatively, or in addition, you can make an advance statement or a formal Advance Decision [Further information from Compassion in Dying]

I’ve had this documentation in place myself for many years – even though I am relatively young and healthy. I know how important such documentation is because my own family has had to confront the traumatic things that can happen when it is not in place, as we’ve described here: “M, Polly and the right to die” and “Doctors wouldn’t let my sister die”.

I would urge anyone who’s been considering sorting out paperwork for themselves to do this as soon as possible.  If it doesn’t feel right to do it over Christmas, there is always the opportunity to make it a New Year’s resolution!

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

Thank you to Joanna Kosinska on Unsplash for the image.

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