By Celia Kitzinger, 12th March 2024
He’s in his early 20s with a severe learning disability, having been born with partial Trisomy 13, meaning that he has an extra chromosome. He also has a congenital heart condition known as “Tetralogy of Fallot”. He lives at home with his mother who is his primary carer (though he also attends a day care centre). He hasn’t been vaccinated against COVID-19 – and that’s why this case is back in court.
This case (COP 13905631) has already been heard, and judgment given, more than a year ago, on 8th September 2022. His Honour Judge Burrows made an order that it was in P’s best interests to receive the vaccinations, and refused permission to appeal.
On 16th December 2022, Hayden J also dismissed the application to appeal.
The mother’s attempts to reopen the matter in 2023 by reference to the evidence of an external expert, Professor McCaffrey (see Appendix for links to his work), have also failed. She’s exhausted her right to appeal.
But Tom (not his real name) is still not vaccinated. His mother has refused to agree to a date when this can happen. And she’s moved her son from his previous GP (who supported vaccination) to another who does not.
This is an application from the Integrated Care Board (ICB) responsible for Tom’s care – represented by Adam Fullwood of 39 Essex Chambers. The ICB is asking for an order to compel his mother to cooperate with the vaccination programme. It was heard (remotely) by Mr Justice Hayden on 8th February 2024 sitting in the Royal Courts of Justice.
Tom is represented by an “alternative legal representative” (ARL) who has instructed Oliver Lewis of Doughty Street Chambers as counsel.
Tom’s mother is represented by Paul Diamond, an independent practising barrister, who was making the case for a “reconsideration” of whether it was in Tom’s best interests to receive vaccinations against COVID-19.
Position of the applicant ICB
The applicant, NHS Cheshire & Merseyside Integrated Care Board is clear:
“The order of HHJ Burrows remains valid and must be given effect to. There is a public interest in finality and an end to litigation not least by reference to the stretched and finite resources of the courts and public bodies […] The ICB seeks orders from the court to give effect to the order of HHJ. Burrows including orders requiring [the mother] to cooperate with all arrangements to give [Tom] the vaccinations for Covid-19 at a time and place to be confirmed.”
In her position statement, the mother had raised again the issue of Professor McCaffrey’s evidence (which the judge had already declined to admit), and wanted him to be formally invited to provide expert evidence to the court. The ICB strongly opposed this because it would lead to “significant delay and costs” for this case, and also because “it amounts to a challenge to the national guidance (JCVI/Green book) and the science behind that”.
“With all due respect to Professor McCaffrey his evidence stands as his own personal opinion in contrast to the JCVI/Green Book guidance which is approved by HM Government, is based on significant peer-reviewed research and is applicable to the administration of vaccinations against Covid-19 in this country.”
Judicial considerations
The judge made clear at the outset of the hearing that “everyone from different perspectives has [Tom’s] safety and welfare at heart. I am not going to get sucked into oppositional perspectives”.
Nonetheless, he raised some concerns.
He was baffled as to how “a doctor confronted with a judgment, upheld on appeal, that vaccination was in [Tom’s] best interests, how did that doctor feel she was in a position to completely disregard it?” Later he said, “she should have declined to be his GP if she couldn’t deliver on his best interests”.
The judge asked “what on earth was happening over all this period while an order of Judge Burrows was in force? I don’t get a sense that anything forceful or muscular was done. There seems to have been a lot of handwringing. It’s difficult to understand what was so challenging”.
There was the following exchange:
Counsel for ICB: Perhaps the ALR characterisation was right that “the ICB was being a little too accommodating of [Tom’s mother]”.
Judge: They’re putting their patient second to [his mother] is what that means.
Counsel for ICB: They were trying to reach consensus.
Judge: But Mr Fullwood, the case had already been litigated. And upheld on appeal. To say that the ICB was trying to be cooperative and conciliatory and working together in circumstances where it’s already been litigated is unhelpful. It’s unhelpful to [Tom].
Counsel for ICB: On behalf of the ICB I acknowledge that the delay that [Tom] has experienced is unacceptable.
Judge: It is. And this should have been line number one of your submission.
Counsel for ICB: I say that now, and I say it genuinely.
Position of Tom’s mother: Parental rights
The “framing” of the argument by Tom’s mother and her counsel was in terms of parental rights in relation to incapacitated children over the age of eighteen. The position they argued for was that the state should not override the rights of parents of incapacitated adult children without evidence of significant harm: “a child does not become the creature of the State as soon as the child turns 18,” said counsel for the mother.
Counsel turned for support for this proposition to Birmingham City Council v D (Equality and Human Rights Commission & Others intervening) [2019] UKSC 42, [2019] 1 WLR 5403] and to the common law principle of parental rights and responsibilities which continue into adulthood.
“The simple question is who should and who can exercise autonomy for [an adult without capacity]: the parent, the Court or the State? The idea that an incapacitated individual, with the mind of an infant in the body of an adult, has ever been able to exercise freedom is misconceived. He has no freedom to be protected; it is position in his family, the protection provided by his family, that is to be protected […]. For the Court and/or the state to assume, absent circumstances of urgent and unquestionable need, the responsibility for decisions within a family is not only an overreach in respect of the family but fails to recognise that respect for an individual’s dignity includes respect for his family life.” (Counsel for mother)
The judge didn’t show much patience for this line of argument.
Counsel for mother: We don’t think the court has jurisdiction to interfere with the reasonable decisions of a competent parent.
Judge: The law is crystal clear on this. He’s an adult. He has the autonomous rights of any other adult – and they are given effect to through his ALR and ultimately through me. Would you like your father to be taking decisions about you? (silence). You don’t need to answer that. But the vacuum cannot be filled by a parent however loving or well-meaning.
Counsel for mother: You’ve made your view clear on that.
Judge: I’ve made the legal position clear.
Counsel for mother: I accept it’s closed. I just point out to you that Mumby and the Supreme Court have left this open in Birmingham City Council v D [Equality and Human Rights Commission & Others intervening) [2019] UKSC 42, [2019] 1 WLR 5403]
Judge: No. This is about [Tom]. It’s not about people ventilating fascinating points of law in the Supreme Court. I am not going down that avenue. So can we turn to the issues here. What you’re asking for is a reconsideration of the best interests decision.
My reflections on this exchange
I was somewhat taken aback by the judge’s question, “would you like your father to be taking decisions about you?”. It was an unexpectedly personal question to a barrister making a case for his client. His personal views are strictly irrelevant.
But it did make me think. Would I prefer my father to make decisions about me if the alternative was a judge in the Court of Protection? Oh yes! A thousand times, yes, because my father and I had many conversations about medical treatments and what each of us wanted (which wasn’t the same), and I had every confidence that he would have known my views.
In fact, I don’t need anyone to make decisions for me about COVID vaccinations because I’ve put my refusal of them in my (legally binding) Advance Decision to Refuse Treatment (ADRT). My father died last year, so he won’t be the one involved in making decisions for me anyway. But I have appointed other family members to be the decision-makers for me in the event that I can’t make decisions for myself (for any decisions I’ve not already made in advance in my ADRT). I’ve made a determined effort to avoid a judge ever being in the position to make health and social care decisions on my behalf.
I’ve been able to make an ADRT and to nominate family members I trust to be my decision-makers because I have the requisite mental capacity to do so. The problem for Tom’s family (as for the parents of other learning-disabled adults) is that Tom has never had the mental capacity to make a legal document refusing treatments or specifying that he wants his parents to be his decision-makers – and so the law currently seems to mean that there are circumstances under which those decisions default to others, and in this case to a judge. But my own experience means that I can quite easily accept the position put forward by counsel for the mother that Tom might, if he could, prefer the decision of his mother – who has looked after him all his life and upon whom he relies for daily care – over that of a judge.
Appointing the expert witness
The mother’s concern about COVID vaccination is that the risks and benefits have not been assessed for people (like her son) with Trisomy 13. She is asking the court to commission an expert report from Professor McCaffrey (the expert she’s already consulted herself). He’s a Professor in the Department of Paediatrics in the Division of Neonatal-Perinatal Medicine at Chapel Hill University in North Carolina, and medical advisor to the Support Organisation for Trisomy (SOFT), Be Not Afraid and the Trisomy Alliance (see appendix for some more information about him).
Professor McCaffrey has already prepared a report for the mother (on 17 January 2023) in which he says that the evidence shows that Trisomy patients have a potential 17-fold increase in the risk of myocarditis after vaccination and that the risk of death from vaccination is fivefold higher than the risk of death from Covid.
Counsel for the mother complained that “wholly unacceptable comments” had been made about her proposed expert witness. The alternative legal representative (representing Tom) had – he alleged – “criticised his Catholic faith”.
“I don’t think this has anything to do with religion at all”, said the judge. “This is about science and the evaluation of risk. I’m really not wanting to hear vituperative remarks from either side”.
There was some consideration of the basis on which this case was being re-opened. I’m not very clear quite what was decided. Here’s what the judge said:
“I don’t think I would be in this position at all if the application had been brought to me to make promptly, but the passage of time means we now live in a world which is more questioning of the pandemic regime, and healthily so, now that we are out of it. This offers an opportunity properly to evaluate this question rather than to deal with it in summary format. But COVID has not gone away. [Tom] is still vulnerable. On the very general framework of government guidelines he continues to be vulnerable… but although he’s had COVID he’s fit and well, so that causes me to think if there is a possibility of looking more closely at this, it may be productive. I noted as I was reading Professor McCaffrey’s report and checking his references … inevitably all those papers were published around April 2023, so that illustrates strikingly the evolution of our understanding during the course of the pandemic. I don’t know if I will ultimately find Professor McCaffrey’s report to be informative of the correct decision, but I would like it to be afforded an opportunity for its fullest consideration. […] The key arguments properly distilled and advanced by Mr Diamond are those in Professor McCaffrey’s first statement where he emphasises that the efficacy and safety of the vaccine for COVID-19 in a cohort of Trisomy patients has never been studied in randomised clinical trials…. […] In a different climate where [Tom] has shown himself able to fight off one COVID infection and not to have been more susceptible than others, it strikes me as providing a reasonable and proportionate opportunity to evaluate whether there’s any substance in Professor McCaffrey’s analysis. […] The appellate route has closed down. This is a fresh application.”
So, the judge is considering whether or not COVID vaccination is in Tom’s best interests as if for the first time. The next hearing will be before Hayden J on 4th and 5th July 2024.
Celia Kitzinger is co-director of the Open Justice Court of Protection Project. She has observed more than 500 hearings since May 2020 and written more than 100 blog posts. She is on LinkedIn (here), and tweets @KitzingerCelia
Appendix: Work by Martin McCaffrey
McCaffrey, M 2016 Trisomy 13 and 18: Selecting the Road Previously Not Taken Commentary in American Journal of Medical Genetics Part C Semin Med Genet 9999C:1–6.
A video of Dr. Martin McCaffrey speaking at the Perinatal Conference in Dublin, 2016, YouTube
Promoting Open Justice in the Court of Protection 