By Celia Kitzinger, 27th July 2021
On Tuesday 13th July 2021, a judge ruled that JS, a fifty-year-old man with a severe learning disability, must be vaccinated against Covid-19 – notwithstanding the firm objection of his parents, who believe that their son’s learning disability was caused by the triple vaccination for smallpox, diphtheria and polio he was given as a baby.
The parents are not “anti-vaxers” – indeed, both have been vaccinated against Covid themselves – but they believe that JS is particularly vulnerable to harm from vaccinations and that the Covid vaccine “may cause him more damage”.
The hearing (Case no. COP 13758986) was before District Judge Glassbrook sitting in Northampton County Court. (These cases are no longer heard only before Tier 3 judges, see para. 35 https://www.bailii.org/ew/cases/EWCOP/2021/31.html)
I also observed the directions hearing (with different counsel) before the same judge four weeks earlier on 14th June 2021. The judge took some pains to ensure that the final hearing was “reasonably speedy” following the directions hearing because “if he’s to have the vaccination, it had better be soon: without it, on the applicant’s case, he’s at continuing risk”. Both hearings were via MS Teams.
The applicant was the GP Practice, represented in the final hearing by Conrad Hallin.
The parents appeared in court as litigants in person.
Is JS at risk of covid infection?
Until January 2018, JS lived at home with his parents. Since then, he’s lived in a specialist placement for people with learning disabilities and complex needs. His mother said: “the only reason we put him in a home is so that he has a place to live when we’re no longer around. It doesn’t affect our responsibility for him at all. He’s been coming home every weekend”.
According to counsel for the GP Practice, JS is at risk of covid (as we all are) but this risk is increased by his age, his sex, his severe learning disability, and the fact that he lives in a care home. It is also increased in part because he is “very sociable”: prior to the pandemic he attended a day centre four days a week, and he enjoys nightclubs, bowling, swimming, and the local boating lake.
This description was later contested by the parents. His mother said:
“There’s not been enough investigation of JS’s lifestyle. ‘Social’ means a very different thing to JS than to another adult in this society. He’s quite protected in the environment that he’s in – everywhere he goes he’s with at least two carers. He needs assistance with walking, for balance. If he’s sat down, he will stay sat down. He won’t be using public transport: if he goes anywhere, it’s in the protected environment of a minibus. So he has very little contact with a wider public. When people say he’s ‘socially active’ that makes it sound that he’ll go into supermarkets on his own. I don’t want to put words into people’s mouths, but he won’t go into supermarkets. If he goes to a disco he won’t be standing up and dancing, because he can’t.”
Later, she said, “He likes going out, but he doesn’t socialise because he can’t” and when Conrad Hallin said, “He enjoys the company of other people”, his father replied: “At a distance. He’ll be sat down on a seat, and if he sees children playing, he smiles – but he doesn’t go up and talk to people.”
His mother was clear that “I’m not querying in general about how virulent the virus is, but I’m querying how likely it is that JS is going to get it.”
The issue of whether or not, in fact, JS is “sociable” and what that means for him was repeatedly raised as a relevant consideration in making the decision about vaccination. According to his mother, “JS’s particular lifestyle means he is protected from the wider community” – he doesn’t socialise with strangers, the staff at the care home are all vaccinated and regularly tested. His father pointed out that he’s been theoretically “at risk for the last 18 months and he could have caught it – and he hasn’t” – which he puts down to “good management of the care home”.
The GP Practice and the Accredited Legal Representaive, on the other hand, were concerned about the risk to JS from care home staff (especially with the cessation of covid restrictions from the following week, and the spread of the new Delta variant) and the possibility that, without vaccination, JS would be stopped from doing activities he enjoys (like swimming) which require close proximity to staff who might be carrying the virus.
There was no dispute as to capacity. His mother said at the directions hearing that it was “pretty obvious that he doesn’t have mental capacity”. But the judge noted that “the COP3 [capacity report] isn’t quite as full as one would ordinarily anticipate” and asked for another capacity assessment in time for the final hearing. The subsequent assessment confirmed that JS is not able to understand information about the vaccine – despite various attempts at conversations using Mencap easy read vaccination cards, picture and signs as well as words. A decision was, therefore, required in his best interests.
Wishes and Feelings, Beliefs and Values
As part of a ‘best interests’ decision, it is necessary to take into account the views of the protected party (s. 4(6) Mental Capacity Act, 2005). It had “proved impossible” to ascertain JS’s wishes and feelings about vaccination.
Apparently, JS is “quite amenable to venepuncture” i.e. having a vein punctured as part of a medical procedure such as to draw blood (this was mentioned by the judge towards the end of the hearing), “so it’s said he’s unlikely to object to being vaccinated, but the idea in the event that he does is that someone should hold his arm to make sure he can be vaccinated”. This was confirmed by JS’s mother, who said, “you’re not going to have too much trouble vaccinating him: you might have to hold his hand, but he will smile; that’s not our concern.”
As the judge said, JS “may not understand whether the needle is for taking something out or putting something in” so not objecting to the needle is not the same as not objecting to (or agreeing to) vaccination as such.
Counsel for the GP Practice speculated on “the beliefs and values that would be likely to influence his decision if he had capacity” and “the other factors that he would be likely to consider if he were able to do so” (s.5(6) Mental Capacity Act). He argued 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)
The 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.
My own view is that claims about what someone who’s never had capacity would decide if in fact they did have capacity and were acting reasonably are rather nonsensical. They tell us more about the speaker’s own wishes, feelings, beliefs and values (and what they think ‘reasonable’) than those of the protected party.
The Position of the GP (and Accredited Legal Representative)
The GP Practice (represented by Conrad Hallin) had “felt compelled” to bring this application to court because “as long as he remains unvaccinated, JS is at serious risk of covid, including serious disease, long-Covid and death”. Balancing the “minute” risks of vaccination against the very severe consequences of Covid – especially for someone with learning disabilities – the GP Practice came down firmly on the side of vaccination. The Accredited Legal Representative took essentially the same position.
In support of the position for vaccination, the GP presented evidence from the medical literature that “approximately 14% of all people with covid-19 develop severe respiratory disease with T1RF [Type 1 Respiratory Failure], and a further 5% will become critically unwell, many of whom will require intensive care”. Extrapolating from this, if he were to contract covid, JS would have around a 1 in 7 chance of developing severe respiratory disease and at least a 1 in 20 chance of requiring intensive care – these estimates are not adjusted to take account of JS’s learning disability or the impact of more virulent recent variants. Counsel for the GP reminded the court “the Delta variant is picking up and we may be on the cusp of another wave”. It was also less than a week before so-called ‘Freedom Day’ in England, with the lifting of covid restrictions likely to mean increased risk of contracting covid.
The risks of vaccination were (said Conrad Hallin) “miniscule”. According to the Medicine and Healthcare products Regulatory Agency (MHRA), addressing the risk of blood clots:
“By 31 March 2021, a million doses of the COVID-19 Vaccine AstraZeneca had been given in the UK meaning the overall risk of these blood clots is approximately 4 people in a million who receive the vaccine.” (here)
Under cross-examination by Joseph O’Brien (representing JS via his Accredited Legal Representative), the GP described CPAP (continuous positive airway pressure) – the treatment for severe respiratory disease. It involves wearing a mask “like the Darth Vader mask in Star Wars – it covers most of the face”, and it “forces you to breathe in and out, which feels unpleasant”. The GP expressed concern about whether JS would tolerate this treatment. She said he would likely find it “distressing and intolerable” and quoted from an article in the British Medical Journal:
If CPAP is ineffective, or can’t be used (e.g. because JS resists it) ,the next stage is “intensive care – a tube down the throat and into the lungs, with a machine breathing for you – it’s very invasive”.
All this, as Joseph O’Brien highlighted, at a time when “we are coming out of the national lockdown” and the rate of infection in the geographical area where JS resides is “higher than the national average”.
Offered the opportunity to cross-examine the GP, JS’s mother asked “Have there been any covid trials on brain-injured people?”. The GP said there had not, but that the ‘yellow card’ system had not indicated that brain-injured people were at any additional risk of damage from the vaccine.
The mother then asked, “Do you know how many people who have brain injury have abstained from having the vaccine, whether it was they who said ‘no’, their parents who said ‘no’, or their doctors who said ‘no’ – because they wouldn’t be in the statistics, would they, if they said no”. The GP said she didn’t know the answer to that question.
The judge intervened to address the GP:
For the GP Practice, then – and also for the Accredited Legal Representative – the risks of vaccination are low and the benefits in terms of protection against serious illness are high. Their position is that JS should be vaccinated.
The parents did not really dispute the statistical evidence. What they challenged (repeatedly) was its applicability to JS as an individual – a person they know better than anyone else, a person who lived with them for 47 years, a person they love dearly and see regularly.
At both hearings (the earlier directions hearing and this final hearing) JS’s parents told the story of how the triple vaccine damaged JS, and they repeatedly emphasised their sense of responsibility for the harm they allowed to be caused to him by this – and by the subsequent measles vaccine. Their sincerity and depth of love for JS was beyond question.
Although copies of JS’s medical records had been ordered for the final hearing with a view to uncovering evidence of vaccine damage when JS was a baby, it proved – as the parents had predicted (at the directions hearing) – that “you won’t find any record of vaccination damage”. They described what happened when they noticed that their son was “floppy” back in the 1970s after receiving the triple vaccination:
“We were naïve; we thought it was temporary. The doctors didn’t say it was vaccination damage. We said ‘look how he is – he wasn’t like this at birth’ and they said, ‘oh he’ll be okay’, but he wasn’t. We didn’t realise it was vaccine damage and we went ahead and let him have the measles vaccination, and it affected his left eye.”
At both hearings they also referred to a doctor in London who examined JS in the 1970s and found his condition “consistent” with vaccine damage – but there seemed to be no documentary evidence of this report.
When JS’s father received his covid vaccination, he reported side effects – which also caused his mother alarm for JS:
“I think JS is susceptible to reactions. His father here, when he had the vaccine he had very severe headaches for seven weeks. That’s an exceptional reaction, I think doctors would agree. I think JS will have a bad reaction – it may be genetic given the propensity of his father to having a bad reaction.”
Over and over, both parents emphasised their sense of responsibility for JS’s health and well-being and their reluctance to agree to a vaccination that might harm him.
When the judge asked “what about his quality of life if he gets the disease?”, his mother replied: “Well, we are the ones who would take responsibility for that – whereas no one is taking responsibility for further vaccine damage. The decision-makers wouldn’t be around.”
This reminded me of a similar issue for the daughter of a 70-year-old care home resident in a case before Mr Justice Hayden back in February 2021, when (after the judgment that vaccination was in P’s best interests) the daughter asked who would be liable if anything happened to or went wrong for her mother as a consequence of having the vaccination: “Hayden J’s simple and immediate response was ‘Me’ (see the blog post by Bridget Penhale).
In this hearing, too, the judge took responsibility for making the decision – either to administer or not to administer the vaccine – and explained the basis on which he was making that decision.
The judge’s empathetic recognition that JS, for his parents remains their “little boy”, and their responsibility – despite the law that makes this decision the responsibility of the judge – struck me as a very helpful and supportive aspect of this exchange (and it came at a point where it might have been tempting to argue about who it is who cares for JS now, and where – in fact – the legal responsibility lies).
The value of the GP’s evidence (especially under cross-questioning from Joseph O’Brien) was also apparent in displaying for the benefit of the parents how their son would suffer if (contrary to their expectations) he did contract covid.
When Joseph O’Brien cross-questioned the parents, he toned down his usual robust style – but nonetheless led them to “accept there’s a risk” of JS contracting covid, and created the space for JS’s mother to make a statement subsequently seized upon by both barristers and by the judge. She said:
“We’re scared of him having the vaccination. We’re scared of him not having the vaccination. It’s a scary world at the moment.” (JS’s mother)
On behalf of the GP Practice, Conrad Hallin’s closing submission first addressed the issue of capacity. If a person has capacity to make their own decision, then the court has no jurisdiction to make that decision on their behalf.
In this case, everyone accepted that JS lacks capacity to make his own decision about vaccination, despite the efforts made to support him to do so – and it was agreed that this is caused by “an impairment of, or a disturbance in the functioning of, the mind or brain” (s. 2(1) Mental Capacity Act 2005), i.e. his learning disability.
This triggers the best interests jurisdiction, i.e. “An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests” (s. 1(5) Mental Capacity Act 2005)
Conrad Hallin pointed out that the question of whether or not JS’s learning disability was caused by the triple vaccine “is not a matter that can be confirmed by the medical records”. Concerns about the pertussis vaccine were real (albeit often rebutted e.g. here and here) and “the reality is that we don’t know”. The belief that earlier vaccination caused JS’s brain damage does, however, go to the heart of “understanding the motives of [the parents] in this case”. They have, he said, “understandable fears”.
Despite the parents’ fears, the “objective evidence” is that vaccination is extremely unlikely to cause JS harm. Counsel ran through the risks of covid vaccination (a 4-in-a-million chance of blood clots with AstraZenica with a 1-in-a-million chance of dying as a result; the “vanishingly small” risk of anaphylactic shock from the other vaccines; some minor side-effects from all three). He contrasted these with the risks of not having the vaccine: “a 5% or higher chance of dying if a member of the general population contracts covid”.
“In their written evidence, the parents say they don’t want to gamble with JS’s life or with his health. I’m afraid NOT having the vaccine is to gamble with JS’s life and health. It’s also urgent. The Delta variant is picking up. The country is about to unlock in a week’s time – slightly less than a week’s time – and cases are expected to pick up substantially from next Monday. It’s unrealistic to think that JS isn’t going to be exposed to a very heightened risk of covid in those circumstances. He should not be kept from doing the things he wants to do in order to protect him. The reality is that he has close contact with carers who may carry the virus and if they get covid they have been vaccinated and will be protected from serious disease, and his parents have been vaccinated and are protected from serious disease, but JS hasn’t been, and that is simply wrong.” (Conrad Hallin, counsel for the GP Practice)
On behalf of the Accredited Legal Representative, Joseph O’Brien “agreed entirely” and was “as one” with the position taken by counsel for the GP Practice – both on capacity and on best interests. He took some care to pay proper consideration to the views of JS’s parents:
“Their views are very important. They know their son best. They have cared for him for 50 years. Their wishes and feelings deserve proper respect from everyone in this case. They struggle with this decision. They live in fear of the vaccine and they live in fear of the disease. They are not alone. Many people share those very same concerns. At the core of it, for them, is their son’s best interests.”
However, he concluded – for the same reasons as those advanced by the GP practice – that “the GP should be successful in persuading the court that a course of vaccine treatment is in JS’s best interests”.
On behalf of both parents, JS’s mother said she wanted to counter the idea that their assessment of their son’s best interests was “just an emotional one”. She referred again to the damage caused by the triple vaccination:
“We were there. We saw how he was before the vaccination and we saw how he was after the vaccination. And we can say categorically that the vaccine did affect him. We were naïve enough to say, ‘well the damage has been done now, and vaccines are in general a good thing’, and so we agreed to a measles vaccination in 1972, and it affected his left eye and he can see very little and that has affected his way of life, and we’re concerned about his quality of life with this vaccination, if he’s that ‘one in a million’. It’s because we know what happened with the two previous vaccinations that we’re concerned with his quality of life after a third vaccination.”
And JS’s father added, “We’re still not convinced that the vaccine won’t cause JS harm”.
District Judge Glassbrook took a break to prepare an ex tempore (oral) judgment, which he delivered at 3.00pm.
He accepted that JS lacked capacity to make his own decision and that a best interests decision was therefore needed.
He acknowledged that it was not possible to ascertain JS’s own feelings and wishes about vaccination and said, “I believe if JS could have his say, his beliefs and values would lead him to choose the route that enabled him to avoid harm and gain the best life overall”.
“In my view,” he said, “the key to the case is balancing the risks and benefits of vaccination against the risks and benefits of the virus itself”.
He was “entirely satisfied that the risk of significant harm from the vaccine is very small, and the risk of the disease is very substantial indeed”. He pointed to the benefits of the vaccine for JS in reducing his risk of contracting covid, reducing the severity of the disease if he were to contract it, reducing the risk of JS being exposed to the challenges of treatments such as CPAP and intensive care, and reducing his risk of death. Vaccination would also, he said, allow JS the opportunity to better engage in social activity.
In conclusion, JS should have the double vaccine “and should have them as soon as possible”. There is no expectation that he would resist, “but if he does so, I authorise a very limited restraint – no more than the brief holding of his arm”.
The judge acknowledged that this decision will make the parents (who “clearly love their son dearly and have demonstrated this throughout his life”) very anxious. “But I have decided what I truly believe is best for their son.”
As the hearing ended, JS’s father put a comforting arm around JS’s mother. They both looked upset and anxious. “We just hope your decision brings benefit to our son, rather than more harm”, said his mother. “Mrs S, so do I”, said the judge: “Nobody has a working crystal ball, but I firmly believe it’s the decision that’s best for JS”.
Celia Kitzinger is co-director (with Gillian Loomes-Quinn) of the Open Justice Court of Protection Project. She tweets @KitzingerCelia and @OpenJusticeCOP