By Elissa Novak, 3rd February 2025
Despite her own best efforts, and the support of her family and those involved in her care, a 21-year-old autistic woman diagnosed with depression and anorexia nervosa is facing the very real prospect of death.
This is the desperate situation at the heart of the hearing I observed (remotely) on 3rd December 2024 before Mr Justice Hayden.
The person at the centre of this case (COP 20003709) is CC, an “intelligent” and “bright” woman who is now “severely malnourished…not engaging with the recommended treatment, putting her at significant risk of harm if not death”.
Part of a large family described as “ultra-orthodox Jewish”, CC was present during the hearing, watching proceedings off-screen, alongside her parents, from a room in the hospital where she is receiving treatment.
There was a sense of quiet urgency to this hearing that I have not experienced before. Counsel for the Trust, Adam Fullwood, requested that the judge, Mr Justice Hayden, make declarations on the day of the hearing – something the judge had not anticipated in advance, but was prepared to do.
Mr Justice Hayden had heard CC’s case before. The Open Justice Court of Protection Project has published three previous blog posts reporting the case: “Treatment for Anorexia Nervosa: A brief directions hearing (with a new postscript on transparency)“; “Respecting autonomy in treating Anorexia Nervosa” and “An in-person hearing on anorexia (Re CC): Observer’s rollercoaster and the role of “hope””. There is also a published judgment: Barnet, Enfield and Haringey Mental Health NHS Trust v CC & Ors [2024] EWCOP 65 (T3).
In a hearing on 30th and 31st October 2024 (so just a little more than a month before the hearing I’m reporting on here), CC’s treating clinician made a strong case for her to be treated with esketamine – a psychedelic drug which might help her to engage with talking therapies. In that judgment, Hayden J said: “Esketamine may well be an option for CC, perhaps even in the near future, but if it becomes an option, it must have the best possible chance to succeed, following the plan which Dr X has suggested, and which I am persuaded is in CC’s best interests. That plan is to be refined and considered further at a directions hearing in a few weeks.”
Mr Justice Hayden was not satisfied that esketamine was in CC’s best interests at the time of that earlier hearing, but as he pointed out to Mr Fullwood at the start of this hearing, there is an “important distinction” between not being satisfied that esketamine treatment is in CC’s best interests at this time, and deciding it is not in her best interests at all. This case was back in court to consider esketamine treatment.
The hearing on 3rd December 2024
Mr Justice Hayden is a fascinating judge to observe. The hearing lasted just shy of an hour but in that time he grappled with the physical and emotional implications of esketamine treatment, CC’s understanding and expectations, and the role that her autism and trauma played in this and in the potential treatment outcomes. This was not, by any stretch of the imagination, a simple case – and yet somehow it was concluded within an hour with all parties seemingly happy, heard and cautiously hopeful for the future.
Since the last hearing, Mr Adam Fullwood (for the Trust) and Ms Fiona Paterson KC, (representing CC via the Official Solicitor), had worked together to identify specialists to support the case for treatment. Prior to this hearing, the court had been provided with expert reports from a consultant psychiatrist who leads a ketamine service and by a consultant anaesthetist who had been instructed to address concerns around risks relating to CC’s low BMI and physical frailty. Both were present during the hearing alongside the clinician who had given evidence at the last hearing and one of the doctors from CC’s clinical team.
It was explained throughout the hearing that the two experts were in agreement that the physical risks to CC could be managed and mitigated by ensuring that recovery equipment was available and that she was continuously supervised while under the influence of the esketamine. Mr Fullwood outlined that the treatment would involve slowly titrating doses of intranasal esketamine until CC was in a dissociative, dreamlike state. According to the evidence, this dissociative state would be key, as it is at this point that patients are best able to engage with, and therefore benefit from, talking therapies.
Although there seemed to be agreement that the physical risks could be mitigated, it was less certain whether the emotional risks could be. Hovering over this hearing, though not discussed in detail, was CC’s past history of trauma. Mr Justice Hayden was, in his own words, “disturbed” by the risk that placing CC into a dissociative state may re-traumatise her. A difficult balance had to be struck between the potential emotional harm and trauma of esketamine treatment and the likelihood of harm and potential death without it. As Ms Paterson explained, CC had already tried many therapies both via the NHS and privately to no avail. Given the seriousness of CC’s current situation the Official Solicitor felt it was “worth taking the risk, as the risks [of esketamine treatment] can be managed…the alternative [is] she carries on struggling as she has done up until now”.
In summarising Ms Paterson’s position, the judge spoke candidly: “CC knows I tend to speak quite bluntly. That is something that she and I have in common: she tends to speak quite bluntly too…. I’m also not allergic to the word ‘death’… Such is her physical condition, so depleted is it, such is the paucity of options left available to her given the many treatments she has tried, and such is the paucity of her condition that if nothing is done she will die…. Against that grim prospect, it’s worth trying almost anything because the alternative is so bleak”.
CC, who at this point was visible on her own screen, smiled as Mr Justice Hayden spoke of their shared bluntness. He went on to say that it is“not often the risk balance matrix comes in this stark way… I think there is unanimity now that CC should try the esketamine treatment…. I don’t think analysing the risk in this way requires me to take a greater than average risk…. This unlicensed drug has sufficient positive indications from its very limited research base to be worth a try…. It’s not a miracle cure – it will require hard therapeutic work, which will be difficult, but it will make that work potentially easier for her”. He said he was beginning to understand that esketamine “opens up more effective involvement in therapy” which will in turn “help develop CC’s understanding of her relationship with food & her ASD [Autism Spectrum Disorder]”.
It seemed at this point that Mr Justice Hayden might be ready to make the declaration requested, but there were lingering concerns about the likelihood of re-traumatising CC, the consideration of her autism in relation to the treatment and the lack of an exit strategy for ceasing treatment. One of the expert witnesses confirmed that he had treated autistic patients with eating disorders before and, though “particularly challenging”, he believed they had benefited from treatment.
Mr Justice Hayden then declined to call other witnesses and spoke directly to CC: “I’m going to make the order. It’s not an easy declaration for me to make as this is an unlicensed drug & carries potential significant side effects and risk of relapse … I don’t want to wrap things up for you because that’s not the young woman I’ve come to know…. You prefer to confront things full on, as they are, rather than wrapped up in platitudes…. T his is not a miracle cure…I. I requires therapeutic hard work on your part alongside the esketamine, but with your body mass as it is and your prognosis longterm being so poor, this has got to be worth a go. So we’re going to go for it…. how do you feel about that?”. CC replied: “I’m happy to give it a go”.
Asked to rate how she felt about beginning treatment on a scale of 0 to 10, with 0 being the unhappiest, she said, “I’m not going to get my hopes up too high, because then I’ll just get disappointed but I have a bit of hope…between 5 & 10” and the judge replied: “I think that’s exactly the right place to be…that’s the intelligent place to be, that’s what I’d expect of you…I’m going to make the declaration…I think you know that I will be rooting for you, hoping you do well, wishing you luck”.
On reflecting on this case, I keep being drawn back to CC’s smile as Mr Judge Hayden spoke of their shared bluntness. That moment of understanding and validation felt important. At its best, the Court of Protection can be person-centred, reflective, holistic and compassionate – and this was true here. Though no doubt made easier by both parties being in agreement about CC’s best interests, it was notable that both Mr Fullwood and Ms Paterson had worked collaboratively together to provide the best evidence to the court. There was at all times genuine concern and warmth shown towards CC.
As an observer I had little time to get to know CC as the rich and complex individual she is, but I came away sharing the judge’s sentiments and wishing her luck.
Elissa Novak is a full-time carer for her son. (She can be contacted via the Open Justice Court of Protection Project: openjustice@yahoo.com) and is on X @ElissaNoves
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