An in-person hearing on anorexia (Re CC): Observer’s rollercoaster and the role of “hope”

By Sydney White, 21st November 2024

My experience observing the final hearing of Re CC (previous hearings blogged as: Respecting autonomy in treating anorexia nervosa and Treatment for Anorexia Nervosa: A brief directions hearing) was tumultuous in more ways than one. I’ll first describe my unusually challenging time as an in-person observer at the Royal Courts of Justice and how it translated into a greater appreciation for the importance of transparency. I’ll then discuss Mr Justice Hayden’s final decision and the role of “hope” in the case. 

In the hot seat?

On the first day, the hearing was scheduled to begin at 11:30, so I arrived at the Royal Courts of Justice at 10:30 anticipating a lengthy entry process. Luckily, there was no line and I whisked through security. I thus had upwards of an hour to take in the enormous magnificence of the Courts; the space is staggeringly beautiful. 

I wanted to be absolutely sure I was not late, so at 11:00 I made my way to the (rather less impressive) Queen’s Building where the hearing was to take place. When I found the courtroom, the family were all waiting outside, mingling with counsel. The person we now refer to as “CC” (though the case had been listed and reported under different initials at the time) was off to the side, standing alone. Trying to be as respectful as possible, I sat down a few tables away from the group and focused my attention on my laptop, though the urge to watch and listen to the family was intense. Then I heard my name loud and clear: “Sydney White”.

My head whipped around instinctively, and my heart began thundering when I realised that one of the family members had uttered my name. She had her phone open and was pointing to the screen, showing it to counsel for the Trust, Adam Fullwood. I quickly realised that she was referring to the blog post I wrote on the case, which had gone up the day before. She was concerned about anonymity, specifically about the fact that I had used the initials of the protected party from the public court listing. The family member also brought up the blog post by Daniel Clark, which mentioned that CC belonged to “a large Jewish family”. Mr Fullwood agreed to bring up the matter in court. 

Trying to stay as calm as possible on the outside, internally I was in a panic. I messaged Celia Kitzinger (the blog editor of the Open Justice Court of Protection Project),  terrified that I had broken the Transparency Order or would have to face questioning from Mr Justice Hayden in court. I debated saying something then and there, but decided to stay quiet to avoid raising conflict. Celia reassured me that we had done everything in accordance with the Transparency Order and if necessary, I must attribute responsibility for anything under dispute to her as blog editor, since she had made the final decisions about what to publish. She offered to make herself available to the court (remotely) if that seemed appropriate.  I wrote up a little speech based on her words in case Mr Justice Hayden did, in fact, ask me to say anything.

There I was, my first time ever observing a hearing in person, stomach turning and heart pounding because I thought (rather dramatically, looking back) that Mr Justice Hayden would soon be admonishing me or that one of the family members would begin shouting at me when they learned that the girl at the back of the courtroom was, in fact, “Sydney White” herself. When I wrote my name down on the attendance sheet, I felt like I was painting a giant red X on my chest.

I steeled myself and waited for the hearing to begin. Mr Fullwood raised the issue before the judge; he did not say my name but stated that blog posts had gone up which referred to the protected party by the initials orginally selected by the court. Mr Justice Hayden pondered the issue briefly, then said “The initials will be changed”. 

And that was that. I breathed a sigh of relief.

The other point of view

Underneath my fear during that 15-minute experience, there was another emotion coursing through me: guilt. I felt ashamed that I had caused this family stress and, at least in their minds, potentially exposed the difficulties of a loved one to the world. As important as it is for us to maintain open justice in the Court of Protection, I also understood how they could feel what they were feeling. I was sympathetic to their point of view.

Mr Justice Hayden put it nicely in his response to Mr Fullwood when the issue came up again at the end of the day, this time specifically about the references to CC’s Jewish family. He looked at the family and said: ”If I thought there was a chance of identification through [the blogs] I would shut it down in the blink of an eye. I think you’re being understandably anxious“. The judge also reiterated the purpose and importance of Transparency Orders, stating that “…a young person is entitled to some degree of privacy in this process. And so her Transparency Order is in place which permits all members of public to hear everything that goes on in the case but prevents them from…learning anything at all about the individual”.  Thus, Transparency Orders balance patient privacy and open justice – at least in theory (see Daniel Clark’s ‘postscript’ about the transparency order in this case: Treatment for Anorexia Nervosa: A brief directions hearing.)

People can have legitimate disagreements, of course, about whether a balance has been correctly struck.  Hayden J’s judgement (discussed below) dives into the minutiae of CC’s family and religious community. Although that level of detail seems quite exposing, those factors were key in allowing Hayden J to reach his decision because they illuminated crucial features of CC’s methods of thinking and interactions with the world. I think in cases like these, where the issues of capacity and best interests are so intricately tied to the patient’s personal characteristics, some degree of privacy may have to be sacrificed in order for a judge to present a well-reasoned case. 

In a way, this event ended on a high note: it provided an opportunity for CC to assert her autonomy and participate in the proceedings. Mr Justice Hayden wanted CC to be the one to choose the new initials to allow her, in his words, “to exercise her autonomy in as many ways as possible”. The protected party did not, ultimately choose the initials – she said she didn’t care. But it was not all for naught: in place of the initials that the court had originally used in public listings and in the Transparency Order, her mother chose “CC”.  Although we were not required to do so by the Transparency Order (because they cannot operate retrospectively), we changed our blog posts to reflect that choice.

Hope – the judge’s decision

I want to reflect on both the hearing and the published judgment (Barnet, Enfield and Haringey Mental Health NHS Trust v CC & Ors [2024] EWCOP 65 (T3)) specifically in relation to the concept of “hope”.

The first day of the hearing was dominated by evidence from doctors: Dr Matthew Cahill, an independent expert consultant psychiatrist, and ‘Dr W’ who has been treating CC for several years. The conversation quickly became what was essentially a debate about whether ketamine treatment was in CC’s best interests at this time. Dr W thought it was; Dr Cahill disagreed. 

Throughout the hours of medical evidence, a recurrent theme was the importance of the hope that CC had vested in ketamine treatment. For example:

Dr Cahill: We need to be mindful that there was very much a hope of receiving ketamine…we should be mindful of the consequences.

Hayden J: You’ve already heard me say that I recognise how much hope she had vested in ketamine, but that doesn’t mean I will be satisfied it’s in her best interests.

And on the second day, when giving evidence CC’s father said: “She needs to come out today with the same hope that she had with the ketamine”.

Mr Justice Hayden recognised this when he gave his oral judgment, stating that “Dr W’s position was essentially that she had invested so much hope in the ketamine that for her not to get her way would cause her to lose hope. And so that set up an utterly invidious dilemma. Dr Cahill thought ketamine was bound to fail, and Dr W thought ketamine was utterly integral for any way forward”.

The main factors that ultimately led to Hayden J’s decision against ketamine treatment were (1) the risks of ketamine treatment and lack of evidence regarding its use for patients with anorexia and autism spectrum disorder (ASD) and (2) Dr Cahill’s opinion that the core issue driving CC’s depression and disordered eating was her ASD. Dr Cahill firmly believed that “all other treatments would be futile” if CC’s ASD was not treated. 

And yet Mr Justice Hayden emphasised in his judgment that ketamine was not entirely out of the picture for CC. The Trust will bring the judge a plan for “robust, muscular, well-supported and properly resourced ASD therapeutic treatment …accompanying a plan to encourage CC to seize the opportunities that she has and to endeavour to cooperate by taking on and retaining as many calories per day as she can. Alongside that, Dr W and Dr Cahill are going to consider suitable medication. That regime may or may not lead to consideration of a ketamine-based therapy in the future. The therapeutic intervention contemplated may make that quite unnecessary if it succeeds. But if it doesn’t succeed, and if we do find ourselves at the end of the road, then I signal to CC that that is an option that will remain open and available in my mind”.

Thus, the judge did his best to maintain and encourage CC’s hope. CC will continue receiving treatment. Her life will go on, and it seems, paradoxically, that a key factor in reaching that decision was the judge’s recognition of the hope she had in a treatment he refused to grant her at this time. As he said in court: “I have listened to her and her family, the doctors and her nurse. I have been left with a prevailing impression of a young woman in whom the lifeforce beats strongly. Her psychiatrist has introduced and discussed with her the possibility of ketamine treatment. She has invested this with all her hopes and dreams. As the evidence has progressed, I have come to feel that she sees it as her salvation. There could not be a heavier or greater investment in it. But, to my mind, that can only signal the clearest possible will to live. Why else would she be so preoccupied with it?  Irrespective of its suitability, the risks and advantages, the extent to which she reposits hope in it seems to me to show she has hope and chooses life”.

This comment from Hayden J – and the case overall –  makes for an interesting and instructive contrast with another I watched recently, also before Hayden J and also concerned with an anorexic protected party.  In both his oral and written judgment, Hayden focuses on CC as a unique individual and explores her wishes and beliefs in detail.  He was not able to do this for  the anorexic patient in the case he heard recently under Schedule 3 of the Mental Capacity Act 2005. As I discuss in another blog post, (Cross-jurisdictional challenges and Schedule 3 in a case of anorexia: Health Service Executive of Ireland v SM [2024] EWCOP 60), Schedule 3 allows Orders from the Irish Courts to be recognised and enforced in England, but also prevents the kind of intense engagement with the individual at the heart of the case shown here. 

By comparison with the oral judgment in court, in the published judgment Hayden J seems to rein himself in. There is no mention of “lifeforce” or “salvation”. Instead, Hayden J describes CC as being “immensely enthusiastic” about ketamine (§38). The concept of hope was used in a more measured, objective way; the judge writes that “to invest so much hope in Esketamine, only for it to fail, would leave CC with no hope and no alternative plan that she could begin to contemplate. If Esketamine is to be tried, it must have the best possible opportunity to be successful” (§45). In this way, Hayden J uses hope to justify his decision regarding CC’s treatment, rather than as evidence of her “lifeforce”.

Hayden J also uses hope in a different way in the published judgment: he emphasises his own hope for CC and her family. His comments on the possibility of ketamine being used in the future are rephrased to: “[CC] must not perceive my decision as ideologically resistant to what may yet prove to be, and I hope will be, a progression in the treatment of this awful and insidious condition” (§47).  He states, “[m]y respect for her and her family is, I hope, obvious”, and acknowledges that “whilst it is not the judgment CC would have wished for, she will, I am confident, understand it… I hope she will be able to take some heart from it” (§48).  

The reasoning presented for his decision is essentially the same in the written form of the judgment as it was orally in court, but the language and tone of the published version are more restrained. 

Closing thoughts

All in all, my first time observing a Court of Protection hearing in person was tumultuous, but fruitful. I learned that being an observer can be intimidating, though mine was perhaps an extreme (and hopefully unique) case. I learned that the balance between privacy and open justice is a very fine one, and that sometimes a well-reasoned judgment demands more detail about an individual’s life than she might be comfortable with.

I also learned that the difference between what happens in the courtroom and what makes it into a published judgment can be striking. When analysing cases during my research, I will remember that although the judgments are often emotional, they can still be a subdued representation of what happened during the hearings. Observing this case has provided me with a much broader understanding of mental capacity and best interest assessments for anorexia nervosa patients. I’ve looked under the rug, so to speak, and found that the judgments I read are just one part of a much bigger picture.  

Sydney White is currently undertaking her MPhil (Master of Philosophy) in Medical Law at the University of Oxford, having recently graduated from Oxford’s undergraduate law program. Her dissertation will focus on the Court of Protection’s approach to best interests assessments for patients with anorexia nervosa under the Mental Capacity Act 2005. Her fascination with Medical Law brought her to the Open Justice Court of Protection Project.  She has previously published these blog posts: Respecting autonomy in treating Anorexia Nervosa, and Cross-jurisdictional challenges and Schedule 3 in a case of anorexia: Health Service Executive of Ireland v SM [2024] EWCOP 60. She can be found on LinkedIn at www.linkedin.com/in/sydney-e-white, on Twitter/X @sydwhiteCOP and on Bluesky@sydneywhite

_{Note: Direction quotations are taken from contemporaneous notes and I believe them to be correct, but since we are not allowed to audio-record court hearings, they are unlikely to be 100% verbatim.}