COVID-19 vaccination with sedation: Instructing an expert

By Anna (with Celia Kitzinger), 10th August 2022

This is one of a long series of hearings about COVID-19 vaccination in which family members argue against vaccinating P but the judge makes a decision to vaccinate.

This hearing is a bit different from the others because the judge already made a decision that it was in P’s best interests to be vaccinated 14 months ago (in May 2021) but it still hasn’t happened.

The Open Justice Court of Protection Project has published several blog posts about COVID-19 vaccination, including:

As the titles of the first two blogs indicate, a common feature of these hearings is that decisions to vaccinate incapacitated adults can be made by the courts, even when their parents profoundly disagree.

This case, too, like those we’ve blogged about before, draws attention to the fact that a parent does not have the right to decide what happens to their children, adult or not, when they are deemed to lack capacity to make decisions for themselves.

I noticed this tweet on the Open Justice Court of Protection (OJCOP) Project Twitter feed on the morning of 28^th July 2022.

As I happened to have some free time, and having observed two previous hearings felt confident to do so again, I contacted the OJCOP Project and said that I would do it.

As I am involved in an ongoing CoP case as a family member, I am keen to gain as much experience of CoP hearings as I can, to help my understanding and to gain confidence in participating.

Gaining access

I sent an email asking for the link mid-morning, explaining that I wanted to observe the hearing for the OJCOP Project, and within half an hour I had received an email with the link to the case. The hearing would be via CVP (Cloud Video Platform), a platform new to me. Detailed instructions on how to use it were provided in the email, including how to make a test call. I did that and even though I use Safari as a browser (which was not listed as being one of the best browsers to use), it seemed to work okay.

An hour before the hearing, I received a copy of the Transparency Order by email, although a text message was requested to obtain the password to read it.

So, accessing the case was very straightforward.

I logged on about 10 minutes before the start time, was admitted 5 minutes before, and participants joined one by one. The hearing started on time at 2pm and I counted 9 participants in total, including the clerk but without the judge. The clerk first asked everybody to introduce themselves (including me), which I found very useful. Key participants were:

Bethan Harris of Garden Court Chambers, Counsel for the protected party DA , (“P”) , via his litigation friend the Official Solicitor;
Hannah Taylor of Bevan Brittan representing the ICB (formerly CGG), the original applicant for the proceedings, although apparently not the applicant today;
AC, who is DA’s mother – she doesn’t have a lawyer and so is acting as a litigant in person.

There were also two other solicitors, another representative for the OS, and another observer.

The clerk then tried to admit the judge but there were then a lot of technical issues and the clerk left the meeting to try to sort out the judge’s access.

It then became apparent that AC was having technical problems joining and ended up ringing in. The rest of us were waiting for about 25 minutes, which was a little uncomfortable, and I especially felt for AC who kept asking for help with the technical issues.

These things happen and whilst they are frustrating, I for one appreciate being able to observe hearings remotely and I think they give wider access. But this hearing demonstrated how, despite meticulous organisation and planning, problems can still occur.

The judge, apologizing profusely, was finally able to join, although AC remained joined by phone.

I will now summarise the proceedings as faithfully as possible, based on the notes I managed to take – and with a contribution from Celia Kitzinger’s about a hearing she observed in the same case more than a year previously.

Opening the hearing on 28^th July 2022

The judge checked who everybody was and asked for confirmation that the observers had received the Transparency Order, and we both affirmed that we had.

HHJ Brown confirmed that she had received the position statements from both the ICB and DA’s representatives, and from AC – the three parties in the case.

She then asked Counsel for DA to open, stating that she understood she was leaving the case after today.

Counsel for DA then gave a brief summary of the case and the issue before the court today.

She said that DA has a learning disability, Down’s Syndrome and autism – conditions which make him clinically extremely vulnerable to Covid 19. He is intolerant of health care interventions and can become upset by attempts to intervene. He is resistant to having the COVID-19 vaccine, although the ICB responsible for his care believes it is in his best interests to have it. (His mother does not agree.)

Following a hearing in May 2021 (observed by Celia Kitzinger and reported below), the court authorised a care plan involving administration of a sedative to enable covid vaccination. However, the sedative did not work as expected, and so the vaccination was not given. Permission was now being sought to instruct an expert in the use of sedation in the community, to consider how to sedate DA to enable vaccination. This was as part of the process to help the court make a decision for care in DA’s best interests.

The ICB has also commenced a desensitisation plan, a step-by-step approach, incrementally encouraging DA to go to hospital. This was an ongoing process but hasn’t got very far. All possible options for P’s best interests were to be considered, starting with the input of the expert, but also with a multi-disciplinary team, in order to gather evidence.

The issue to be considered today is whether an expert should be instructed (to write a report) and who the instructing parties should be. The planned order for next steps would be the instructing of the expert and gathering of evidence, filing of evidence, a Round Table Meeting and if no agreement, a further hearing.

Some background: a previous hearing on 6th May 2021, by Celia Kitzinger

When I saw this hearing listed, I realised that I’d watched a previous hearing in the same case back in May 2021 (and tweeted about it in a Tweet Thread). On the basis of what I’d seen before, I assumed that DA would have been given the COVID-19 vaccination approved by the court back then – and that this would be a hearing about a booster vaccine.

So, I was very interested to learn from Anna that in fact it had not been possible to administer a vaccine to DA.

At the hearing on 6^th May 2021, I’d listened to the positions articulated in court by the CCG (the applicant), AC, and the Official Solicitor.

Counsel for the CCG had expressed concern that DA is “an extremely sociable young man, doesn’t understand social distancing, rarely wears a mask, will run and hug carers with whom he has a warm relationship”, all of which makes him vulnerable to COVID infection.

The plan had been to give him medication in a morning drink that would have an “anxiolytic” (anxiety-reducing) sedative effect, leaving him sleepy and relaxed. He would be in the lounge of his house and distracted with favourite activities by care staff. He’d have been encouraged that morning to choose a short-sleeved top, and a nurse from the GP practice would administer the vaccine very swiftly without engaging with DA first. It would all be over in 5 seconds (said counsel for the Clinical Commissioning Group) and “force is no part of the plan. […] If the plan does not go smoothly and it’s not possible to administer the vaccine and there’s any proposal for a more restrictive procedure, the CCG will be returning to court”.

AC (who attended the May 2021 hearing also by phone only, and also without a lawyer to represent her) raised a large number of concerns about vaccinating her son, including the possibility of serious adverse reactions, anaphylaxis, neurological damage, blood clotting problems, heart attacks, stroke, organ failure, gene mutations and death. She was dubious about the need to vaccinate him given that “There’s a 99.7% rate of healing and recovery from COVID” and “He’s a very healthy young man, he hardly even gets a cold. I believe he has antibodies in his body and natural immunity”. She said: “I don’t see why we have to inject this really dangerous thing into the healthy body of a young man who is able to resist it. It is too dangerous”.

Counsel for DA via the Official Solicitor (Pravin Fernando) considered the CCG’s vaccination plan to be “well thought out”, and agreed it should be approved. “The only narrow issue,” he said, “is whether court should also be authorising a booster vaccine”. “There are some speculative and concerning issues that have been articulated in respect of the vaccine, but there is also a genuine and legitimate area of debate. I don’t know for instance if I would have a booster in 6 or 7 months’ time. That’s not currently in the public domain for debate. Why should somebody who lacks capacity have that decision made for them now, when other people will make it at the time? There mustn’t be over-reach by the court. Everyone will have the opportunity to consider what steps they want to take for their own health in due course.”

The judge ruled “I accede to the application of the applicant. I accept P lacks capacity to consent. I take the view it is in his best interests to receive both shots of Astra Zeneca in accordance with the care plan, with no force being used. I do not accede to the application for a booster. I accept this could be going into realm of over-reach. I would want to see whether in 6-,7-,8-months’ time whether the booster is considered necessary by scientific evidence.”

AC had raised concerns that DA would “struggle and refuse to have the vaccine”.

The judge was clear: “No force is to be used. If the attempt fails and there needs to be a different care plan, then it will come back to court. […] The nurse that administers it must not use force and that’s the end of it.”

I kept an eye out for a couple of months just in case it turned out that AD did “struggle and refuse to have the vaccine” such that it was returned to court. I didn’t see it, and supposed it had gone ahead according to the care plan.

So that was back in May 2021. Seeing this case listed for a hearing 14 months later (in July 2022), I assumed that the matter of a booster was now before the court. I was wrong.

Instructing an expert: the issue for 28^th July 2022

Given that it had not been possible to vaccinate DA with the mild sedation proposed in the previous care plan, the decision before the judge today was about whether to instruct an expert to advise on higher levels of sedation (short of a general anaesthetic).

The judge was of the opinion that if an instruction is made today for the expert to be commissioned, then it was likely that the case would eventually need to be listed before a Tier 3 judge.

In order to facilitate the passage of the case in the event of higher levels of sedation being recommended, the judge said she had contacted Mr Justice Williams who agreed that in the eventuality that a care plan was approved with a higher level of sedation, it would have to be listed before a Tier 3 judge as a contested hearing (since AC remained opposed to the vaccine).

Counsel for DA (via the Official Solicitor) then outlined the timetable, which was due to go to the end of the year, and the last step would be the Round Table Meeting and then a hearing. So, it would be possible to ask now to list the hearing after the Round Table Meeting, in case no agreement was reached then, or alternatively, they could go ahead with the Round Table Meeting and then apply for listing after that.

HHJ Brown stated that if she did instruct the use of an expert today, then when the report was issued it should be sent to her straight away, and she would forward it immediately to Mr Justice Williams (along with a short summary/case note), who would look at it and who then may determine to list the case before him straight away.

In short, this part of the hearing was, in my view, an attempt to ensure that time was not lost – given that vaccination had been considered in P’s best interests 14 months earlier – and that the case would be heard in front of the most appropriate judge, in the event that it was a contested case involving a higher level of sedation than the original order.

The judge then turned to the immediate matter before her today, the instruction to appoint an expert in sedation.

The judge asked if the judgment of 6^th May 2021 had been challenged, and counsel for DA confirmed that it had not.

The judge then asked counsel if DA had had COVID-19, as it seemed from AC’s position statement that he had. She replied that DA had had a viral illness that seemed to be like COVID, but he hadn’t had a formal diagnosis.

ICB

The judge then asked counsel for the ICB to address her.

Counsel for the ICB reported that an email had been sent to the court from a community nurse (I didn’t quite catch the title), which included a lot of detail and information about the desensitization plan and the lack of progress. That email also included information about DA’s viral illness, which was successfully treated with antibiotics, indicating the illness was not COVID-19.

At this point, the judge stopped to take the time to refresh herself about the contents of the email, consulting her computer.

Counsel for the ICB then stated that, other than the email, the position of the ICB was set out in the position statement.

AC (P’s mother)

The judge then turned to AC, thanking her for her detailed email, and gave her the opportunity to address the court.

AC stated that there were many reasons why an expert was not needed. It was now known that you can still get COVID if you have been vaccinated; it was not known last year but it is known now. She believes DA has natural immunity; he is a healthy man; things are evolving with the truth about the danger of the vaccine, that it would be harmful for his body.

She continued. At the Round Table Meeting of last year, it was agreed that it would not be fair to him to have multiple vaccines as they only last 6 months. Also, new variants aren’t covered by the vaccine. COVID is now a mild illness, and 99% recover. The vaccine is not as beneficial as people first thought (she said) and the risk/benefit (ratio) had changed. He is a healthy man, with no health issues, he has never had a cold, he fights off infections, the whole family is healthy, he recovers from infections fast.

She then stated that she was worried about the neurological effects of the vaccine, that some people had become blind from it and that she didn’t want her son to be hospitalized.

The judge thanked her, saying that she has considered what she had to say, and what she said in her email, and that she has no doubt that AC feels that she is acting in the best interests of her son.

The judge then asked Counsel for DA to comment.

Official Solicitor

Counsel for DA said that the court could be satisfied that the request to vaccinate DA is still valid as he is extremely clinically vulnerable and that even if COVID has evolved, it is known that the vaccine works. She quoted a case by Judge Peter Gregory (that was not precedent), EWCOP 17 NHS Liverpool CCG v X and Y.The judgement stated that “learning to live with the virus does not mean that we should now ignore it or neglect to make use of the protection afforded by available vaccines that have been shown to have a significantly beneficial effect in terms of inhibiting the spread of the virus, reducing the numbers catching the virus, or, in the case of those who still get infected or reinfected, reducing the risk of developing serious illness, admission or death.”(Note: I did not capture all of this as she read it but I looked up the relevant paragraph (42) of the judgment afterwards.)

Counsel for DA said that she was only providing this reference as context for the court to make a decision. She finished by stating that this hearing was not to determine a best interests decision, but to ask permission for further evidence gathering.

Judgment

The judge then announced her decision.

The best interests decision before her was the judgment in May 2021. At that time all the medical professionals and the Official Solicitor fully supported the administration of 2 doses of the vaccine. This was opposed by AC, and her opposition has now increased with new information about the vaccine. Her judgment in May 2021 had been that it was in DA’s best interests to have 2 doses but that it would be over-reach to have a booster and a further application would need to be made for that. She stated that since the judgment had not been successfully challenged, it remains in place.

She continued that with respect to AC’s views about the vaccination, and anti-vaccination information and rhetoric (which is around), the scientific information is that the vaccination is in DA’s best interests and therefore her judgment in May 2021 has not changed.

As of today, the vaccination has not happened – the original plan did not work and DA remains unvaccinated. AC believes that her son is immune, but medical opinion is that immunity can wear off and, yes, you can still get COVID (after vaccination) but symptoms are likely to be less severe. She accepts that there are some lay people, and even some medical opinion, that says vaccines don’t work but there is more medical opinion that it does. Therefore, the expert (Dr Ben Taylor) should be instructed to consider the various options for sedation to enable vaccination. She reiterated that this was not an instruction for a care plan for vaccination.

She then returned to the issue of the potential future listing before Mr Justice Williams, emphasising that she was giving a limited ruling to approve the instruction of an expert only. When the report is available, it will be sent to Mr Justice Williams who will then be responsible for deciding what should happen next.

Finally, she turned to the issue of costs for the instruction of the expert.

Counsel for DA said that AC does not have legal aid, so it might be best for the OS and the ICB to share the costs between them. AC would not be an instructing party but could have access to the report. It was in the hands of the court to decide.

The judge checked with AC whether she had legal aid and what she thought of the suggestion that the two other parties would share the costs of the expert. The judge asked AC whether she followed this discussion. She wanted to check that she understood about instructing the expert. (I thought that this was very useful. I know from experience that it can be difficult to follow the legal arguments). AC replied that she wanted to be allowed to ask questions. The judge confirmed that if it got to the point of being a contested (future) hearing, AC would be allowed to question the expert. But reasonable and proportionate instructions were needed. For now, they are just trying to determine instructions to the expert to enable his report. The judge carried on by saying that AC could still communicate with the parties, but not with the expert directly.

She went on to outline to everybody that the next possible stages were: the Letter of Instruction (for the expert), then the report, followed by further evidence gathering and questions in writing and then a (probably, I imagined, was implied) contested hearing. She concluded that 2 parties (OS and ICB) should be given permission to instruct, but AC should be allowed to ask questions. This is for costs and practical reasons. She then asked when the report was expected and counsel for DA confirmed that the report was due mid-November.

At this point, AC interjected, saying that she had changed her mind, and she wanted to be a party to instructing the expert. The judge was very firm in reply, saying that she had now ruled on the matter but if AC had reasonable and proportionate questions, they could be included in the Letter of Instruction.

There then followed a last-minute plea by AC asking if her son could go home to her but the judge replied that this was not the application before her today so she could not consider that.

The hearing then closed, about an hour after the judge had joined.

Some observations

This hearing was very interesting to me, particularly as – once again – a family member was involved in a legal case concerning a close family member in a court, similar to me with my mother’s case ( although regarding a different legal issue).

Before becoming involved with the OJCOP project, I had felt very threatened by the court process. I now no longer feel that way. But I put myself in the shoes of AC, whose son was (probably) going to undergo a medical procedure which she was vehemently opposed to and I know how I would be feeling (irrespective of my personal views about this particular medical issue). If I put myself in AC’s shoes, she obviously has very strong views, and what mother would not want to fight for her child? It must be very hard to accept that decisions can be made regarding medical treatment that are against your wishes. AC was well prepared and knowledgeable about the process (as far as I could tell) and always stayed respectful and polite during the hearing, which I can imagine is not always the case for a litigant in person.

That said, I thought that the hearing was conducted in a very positive way, from beginning to end. The Clerk asking everybody to introduce themselves at the start helped set the tone. The judge gave AC time to outline her views and said that she realised she felt she was acting in her son’s best interests. She was firm in conducting the proceedings though and made sure an order was followed as to who spoke when.

I found the discussion about whether AC should be a party to the instructing of the expert very interesting. I think that the court wanted to prevent her having to pay a share of the costs for the expert, which I understand can be significant. But I’m not sure that AC saw it that way. By her interjection, I assumed that she was worried that her voice would not be heard, in the instructions to the expert. The judge assured her that her voice would be heard during the ongoing case.

Interestingly, though, in this hearing , the voice of DA, “P”, was not heard.

As with the other hearings I’ve observed, it was very useful for me as a litigant in person in my mother’s case, to see how a hearing proceeds and the efforts of the judge to be fair and even-handed with someone presenting their own case for a family member.

Anna is the daughter of a woman who is currently a P in a Court of Protection s.21A application. She’s not using her real name because she wishes to protect her mother’s privacy, while also hoping that other families can benefit from reading about her family’s experience. She hopes to blog in future about the hearings as the case progresses through the court.

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