By Layba Khan, 3rd September 2026
Every parent wants to protect their child. Yet there comes a point where protection itself may become restrictive. This tension lay at the heart of a case (COP 20033356) I observed on 25th June 2026 before Mr Justice Hayden, sitting in the Royal Courts of Justice.
Following years of serious illness, the parents of the protected party (“P”) in this case had created what the judge described as a “cocoon of happiness” around their daughter. The difficult question before the court was whether preserving that cocoon truly served P’s best interests or whether accepting the risks of elective surgery could offer her the opportunity for a fuller and less restricted life.
I observed this hearing as part of my LLM pro bono project. Mental capacity law is an area in which I have a particular interest; during my LLB, I was awarded the Mental Health and Mental Capacity Law Subject Award. I was therefore particularly interested in seeing how the principles I had studied were applied in practice, especially in a case where there was no straightforward right or wrong answer and where medical evidence, the views of those involved, and P’s welfare all had to be carefully considered.
I’ve previously observed a sexual offence trial in the Crown Court in Leeds. Both hearings involved the consideration of evidence, legal submissions and careful judicial scrutiny, but the purpose of the proceedings was very different. The sexual offence trial focused on determining whether the prosecution had proved the alleged offence beyond reasonable doubt, whereas this hearing focused on P’s capacity to make a particular decision and, if she lacked capacity, what decision would be in her best interests. I found this particularly valuable because it showed me how judicial decision-making can differ depending on the nature of the proceedings.
My interest in the hearing was also informed by my part-time work supporting university students with disabilities. This role has given me experience of working alongside students with a range of support needs and has reinforced the importance of treating each individual as a person rather than simply focusing on their disability. I hoped that observing the hearing would allow me to better understand how these principles are reflected in practice within the Court of Protection, and how the court seeks to ensure that the individual remains at the centre of its decision-making.
Background
The hearing concerned a 24-year-old woman (“P”) with Down syndrome, a learning disability and severe Crohn’s disease. The NHS Trust (Nottingham University NHS Foundation Trust) sought declarations that P lacks capacity to decide whether to undergo further bowel surgery, and, if so, that the proposed elective procedure was in her best interests.
Counsel for the Trust was Ms Taylor (I have been unable to establish which Ms Taylor this was). The protected party was represented by the Official Solicitor as her litigation friend, with Ms Emma Sutton KC as counsel. P’s parents were parties to the proceedings as the second and third respondents and appeared to be acting as litigants in person, addressing the judge directly during the hearing. The seven-hour hearing brought together expert medical opinion, judicial scrutiny and the deeply heartfelt contributions of P’s parents. At its core, the court was required to balance the significant risks of surgery against the potentially life-threatening consequences of allowing the disease to continue untreated.
P is the youngest of three children and had previously enjoyed an active life before suffering an emergency bowel perforation in 2023. She underwent several emergency operations, spent months in intensive care and, following her prolonged admission, had to relearn how to walk and speak. As a result of extensive bowel loss, P now lives with intestinal failure. She receives overnight parenteral nutrition through a central line and continues to live with a stoma requiring ongoing management.
Although she is able to eat small amounts of food during the day for comfort and enjoyment, this provides little nutritional benefit. Despite receiving maximal medical therapy, P’s Crohn’s disease remains active. Recent MRI scans showed ongoing inflammation and narrowing of the bowel, caused by a combination of disease activity and scar tissue formation. The narrowed section, known as a stricture, is already causing a partial obstruction. Whilst bowel contents can still pass through, clinicians warned that there remains a risk of complete obstruction or another perforation developing in the future.
Capacity and the Challenge of Discussing Treatment
Before considering the medical evidence, the court first had to determine whether P had the capacity to make the decision herself.
The consultant colorectal surgeon explained that P had been assessed with the support of a learning disability nurse. Despite appropriate adjustments designed to maximise her understanding, she was unable to understand, retain, use or weigh the information relevant to making a decision about undergoing surgery. The court accepted the evidence that P lacked capacity both to make decisions about the proposed operation and to conduct the litigation itself.
The evidence also illustrated the challenges clinicians encountered when discussing treatment with P. A patient with capacity would ordinarily receive detailed explanations of all material risks, including the risk of death, but P became distressed whenever surgery was discussed and frequently indicated that she no longer wished to engage in such conversation. The consultant explained that As a result of P’s distress, discussions had necessarily been adapted. The judge later observed that P had never been given the full range of information that would ordinarily be provided to a capacitous patient, particularly in relation to the potentially fatal consequences of declining surgery.
Stability or False Reassurance?
Much of the hearing focused on the apparent contradiction between P’s current stability and the recommendation for surgery.
The MRI scans appeared unchanged from imaging performed several months earlier. Counsel on behalf of P questioned whether the absence of significant progression suggested that surgery could safely be delayed. If P had remained stable for five or six months, why could that not continue for another five or six more months?
An independent expert, Dr W, accepted that the scans were reassuring to a degree. However, he cautioned against viewing the imaging in isolation. Scans, he explained, are snapshots in time rather than a complete account of disease progression. Whilst the visible changes over six months appeared modest, active inflammation remained present and, in his opinion, progression was inevitable. The difficulty was that no clinician could reliably predict when the progression would become clinically significant.
This disease could remain relatively unchanged for an extended period of time. Equally, a serious complication could develop before any obvious deterioration appeared on imaging. What Dr W repeatedly emphasised was that what appeared to be stability was not a true status quo. Rather, it was a temporary period of relative calm within a disease process that continued to worsen beneath the surface.
Why Operate Now?
For P’s parents, the prospect of surgery at this stage was particularly difficult to understand. Why now? Why not wait?
For the first time since P’s emergency admission in 2023, she appeared happier and more settled. She had enjoyed her longest period without hospital admission, had adapted to a predictable routine and was spending time doing things she actually enjoys, including listening to music, playing games on her iPad and interacting with her family. Her mother described this as the best year P had experienced since her illness dramatically worsened. To them, this felt like the worst possible moment to put P through another major operation.
To the clinicians, however, this period of relative wellness represented the safest opportunity to intervene before her condition deteriorated further. What P’s parents saw as a period of recovery, the medical team saw as a narrowing window in which surgery could be undertaken in a planned and controlled setting rather than during another life-threatening emergency. Elective surgery is generally safest when a patient is as fit and well as possible.
As the evidence developed, the experts returned repeatedly to the same principle: the question was not simply whether surgery carried risks, but whether delaying surgery carried even greater ones. Dr W described the danger of “missing the boat”.
The Case for Surgery
The Trust argued that maintaining the current position was not a sustainable option. While the proposed surgery undoubtedly carried significant risks, those risks had to be weighed against the consequences of doing nothing. P’s Crohn’s disease remained active despite maximal treatment and another bowel perforation was considered more likely than not. If that occurred, P would likely experience severe pain, widespread infection and peritonitis. Emergency surgery would carry substantially greater risks and might no longer be in her best interests, leaving palliative care as the only realistic option.
By contrast, if the surgery proved successful, there were a number of potential benefits. Most importantly, removing the diseased bowel segment would substantially reduce the risk of future perforation and obstruction. It would eliminate the section of bowel responsible for the ongoing inflammation and remove what clinicians described as the looming risk of a catastrophic event.
Dr W explained that the diseased segment of bowel was responsible for far more than simply creating a future risk of obstruction or perforation. In his opinion, it already posed a risk to P’s day-to-day wellbeing. The ongoing inflammation was contributing to pain, vomiting and restricted oral intake, whilst also causing the loss of protein, antibodies and immune cells through the bowel wall, resulting in reduced immunity, poor nutritional status and a general sense of ill health. The expectation was that removing the diseased section could improve these problems, lessening her reliance on immunosuppressive medication and potentially giving her greater freedom to leave the house and engage in everyday activities that she has increasingly been unable to enjoy. Although there could be no guarantee that P would ultimately become stoma-free, this remained a possibility depending on the findings during surgery and her subsequent recovery.
Food emerged as one of the most significant quality-of-life issues considered by the court. Given the restrictions imposed by her illness, P’s parents described how meals had become one of her greatest pleasures and a central feature of her family life. The judge acknowledged this, observing that food represented much more than nutrition. It is about enjoyment, family relationships and maintaining a sense of normality in her life.
The medical evidence suggested that, if surgery succeeded, P would be able to eat a wider variety of food without fear of pain, vomiting or obstruction. There may still be restrictions in the short term, particularly regarding fluid intake depending on how much bowel remained after surgery, but experts hoped she would ultimately experience greater dietary freedom than she currently enjoys. Importantly, eating would no longer be limited by the mechanical narrowing created by the stricture.
The Risks
The benefits, however, were never presented as guaranteed.
This was going to be a major abdominal surgery carrying significant risks, including serious complications and a measurable risk of death. The immediate recovery period would likely be difficult and prolonged. There was uncertainty regarding exactly how much bowel would need to be removed and the possibility that operative findings may differ from what the MRI scans suggested.
There were also concerns about the psychological impact for both P and her family of returning to hospital, particularly given the trauma associated with her emergency admission in 2023. Dr W was frank that any capacitous patient would have substantial reasons to think carefully before consenting to surgery of this nature. He repeatedly described the decision as delicately balanced, acknowledging both the potential gains and the significant burdens associated with the operation.
The Parents’ Perspective
Throughout the hearing, it was clear that P’s parents’ position was rooted not in distrust of the medical evidence but in the trauma they had experienced watching their daughter fight for her life.
P’s mother said that surgery offered no cure for Crohn’s disease and that recurrence remained possible. She described how P had finally reached a point where she seemed settled, genuinely happy again after years of illness and repeated hospital admissions. To her, the current period represented something precious that could easily be lost.
Throughout the hearing, P’s personality emerged vividly through the evidence. Her father described P as “the queen of the family”, a strong-minded young woman whose approval is still sought by her older brothers. Both her parents spoke of her love of music, her iPad, family interactions and her remarkable ability to adapt to circumstances that would overwhelm many people. Despite living with significant pain and restriction, she rarely complains and often apologises for the impact her illness has on others.
For P’s parents, preserving the quality of the life P currently enjoys was more important than pursuing an operation that carries no guarantee of success. They feared that another major procedure could leave her with further complications while destroying the stability she had only recently regained.
Mr Justice Hayden was clearly struck by their evidence. It was during this part of the hearing that the judge reflected on the delicate balance between protection and restriction. He observed that “wrapping someone in cotton wool” can itself become restrictive and acknowledged the difficulty of risking what he later described as the “cocoon of happiness” that P’s parents had created around their daughter. Nevertheless, he reminded the court that P was “an adult with adult rights” and that the court’s task was not merely to identify the safest option but to determine what outcome truly served P’s best interests.
The Judge’s Conclusion
Mr Justice Hayden ultimately found the evidence regarding the consequences of doing nothing particularly compelling.
The judge was also influenced by P’s personality and character. Having met her personally, he described a young woman who was resilient, sociable, determined and deeply engaged with the world around her despite the considerable restrictions imposed by her illness. He observed that P had never previously been given the opportunity to experience surgery specifically intended to improve her quality of life. Her previous operations had all been emergency, life-saving interventions undertaken in response to catastrophic deterioration rather than procedures aimed at addressing her Crohn’s disease and improving her long-term future.
In reaching his decision, the judge recognised that he was weighing two remarkably different futures. One involved undertaking major elective surgery now, while P was relatively well, accepting the immediate risks and uncertainties in the hope of improving both the quality of her life and potentially the length of her life. The evidence suggested that performing surgery now could allow clinicians to anticipate and plan for any future complications in a way that would simply not be possible during a future emergency admission. The alternative was to preserve the relative stability that P currently enjoyed.
Ultimately, Mr Justice Hayden accepted the medical evidence that this stability did not represent a genuine status quo. Rather, it exists within the context of a progressive disease carrying a substantial likelihood of obstruction, perforation, peritonitis, severe pain and potentially death. The evidence persuaded him that the real question was not whether serious complications would occur, but when. Against that backdrop, the proposed surgery offered P the possibility of a future less constrained by Crohn’s disease and one that she had never previously been given the chance to experience.
Perhaps the most poignant moment of the hearing came towards its conclusion. The parents acknowledged that they understood the medical evidence and recognised why the Trust believed surgery was the right course. Their difficulty was not in understanding the decision but in living with it. Having already watched their daughter come close to death once, they simply could not bring themselves to authorise another major operation and asked that responsibility rest with the court.
In deciding that elective surgery was in P’s best interests, the judge acknowledged the profound love and care shown by her parents but accepted the medical evidence that waiting would expose P to greater risks in the future. The court’s decision was based not only on the prospect of preserving P’s life but also on the possibility of reducing pain, increasing independence, expanding her diet, improving wellbeing and offering her opportunities that her illness currently denied her. In the end, the court concluded that preserving P’s current life and improving it were not necessarily the same thing. Whilst surgery carried immediate and significant risks, the evidence demonstrated that the apparent stability she currently enjoyed could not be expected to last indefinitely. The decision was therefore not about choosing between risk and safety, but about choosing between two uncertain futures. For the court, P’s best interests lay in giving her the opportunity to pursue the better one.
The judgment serves as a powerful reminder that best interests decisions are rarely about choosing between a good option and a bad one. More often, they require the court to navigate between two profoundly difficult paths. In B’s case, protecting her did not ultimately mean preserving the life she has today. It meant giving her the opportunity to have a better one tomorrow.
Layba Khan is a law graduate who has completed the Bar Practice Course and is currently undertaking an LLM in Law at the University of Law. She is an aspiring barrister with a particular interest in mental capacity and Court of Protection law. She can be found on LinkedIn here.
Editorial Note: This case was previously before Trowell J on 11th May 2026 – presumably for directions and case management prior to the final hearing reported in this blog post. At least two members of the public asked to observe the hearing on 11th May 2026 and were not sent the link in time for the start of the hearing. This was because the hearing had been wrongly displayed on the public lists (due to “administrative error”) to begin at 2.00pm. In fact the hearing started at 10.30am that morning. We’ve been told that the listing team have put a system in place to avoid a repeat of this kind of error – which obviously defeats the judicial aspiration for transparency.
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