In Birmingham Women’s and Children’s Hospital NHS Foundation Trust v KB & and ors [2025] EWHC 1292 (Fam), the Court of Protection had to grapple with some remarkable failures of disclosure in a case involving the withdrawal of life-sustaining treatment from a critically ill child.

The Trust had applied for declarations that it would be lawful to withdraw life support for a young child with a rare and devastating condition. Despite clear directions months earlier, the Trust failed to provide a full, coherent set of medical records. Some documents were missing. Others were poorly copied and unreadable. Crucial details, like notes from therapeutic staff and minutes from key meetings, simply weren’t there or were said not to exist.

Hemachandran v Sudiksha Thirumalesh (deceased) and University Hospitals Birmingham NHSFT [2024]EWCA 896 is a landmark judgment given by King LJ with whom LJJ Singh and Baker agree. The successful appeal against the first instance decision that Sudiksha lacked capacity to make decisions about her medical treatment, including palliative care, was brought by her parents. That was because, tragically, Sudiksha died 35 days after the first instance decision of the late, greatly missed Mrs Justice Roberts who is praised, and not at all criticised, by the Court of Appeal. It seems likely that the case will become known as Re Sudiksha or Re Thirumalesh. (In a previous judgment ([2023] EWCOP 43), Peel J authorised publication of Sudiksha’s name).

The adjective “landmark” is justified for two reasons. First, the judgment clarifies the so-called ‘functional’ aspect of the statutory test used to determine whether a person over 16 years has the mental capacity to make a decision. Although the clarification is provided in the context of a decision about medical treatment, the ratio applies to the test for mental capacity in relation to all decisions.

Second, the judgment overturns what King LJ referred to as “an established legal approach to the relevance of a patient’s belief in their illness and prognosis”, which approach she finds to be “wrong and contrary to Court of Appeal authority” (para 10).

GUP v EUP and UCLH NHS Foundation Trust [2024] EWCOP (25 January 2024) 

Cases involving the withdrawal or withholding of life sustaining treatment can be heartrending for all involved, whatever their role.  Such cases will always be uniquely and exceptionally deeply harrowing for P’s family and loved ones.

For any person to become embroiled in conflict with professionals as your loved one is dying must add an unimaginable additional burden to one’s grief.  That burden will be far heavier when that family member is also required to issue court proceedings in order to bring the case before a CoP judge, particularly if having to do so without the benefit of professional advice.  For an inexperienced lay person filing in the necessary COP1 and COP3  and COP24 forms and navigating the procedural labyrinth of making an emergency CoP application, in order to get their case before a judge to be heard, is an enormous challenge.

In this latest serious medical treatment end of life case the Official Solicitor deprecated the family having been left to bring the case to court themselves, after the Trust had initially indicated it would do so but subsequently concluded it was not necessary. The Official Solicitor made an entreaty that all health providers involved in a dispute regarding potentially life prolonging treatment abide by the CoP Practice Guidance [2020] EWCOP 2 and promptly bring the application themselves, rather than leaving unrepresented, inexperienced and often distressed family members (who will frequently not be eligible for public funding) to make their own application.

 Norfolk & Norwich Univ. Hospital NHSF Trust and others v Tooke and others [2023] EWCOP 45

‘Mum wins court fight to save son’  –  ‘Norwich mum wins dialysis battle’ – ‘Family joy as Jordan wins ‘life or death’ battle’  – ‘Trust in legal battle over care can be named’

Sub-editors’ headlines are what sells newspapers, but it is such a shame that in the race to grab the reader’s attention with warlike language about fights and battles, the really important point in this case has been totally lost.

Jordan Tooke is 29 and has a diagnosis of autism, severe learning disabilities, and William’s syndrome.   Related to his disabilities he has developed a long-standing phobia of hospitals in general and needles in particular – which is obviously problematic given he also has chronic kidney disease and recently entered end-stage renal failure.

What the headlines have overlooked is that nobody, not even his parents, thought that Jordan would be able to tolerate the considerable restrictions involved in receiving the life-preserving haemodialysis treatment he would need – for three to four hours, three times a week – when  his kidneys failed.  So when his mother started court proceedings, it was on the express basis that he was not a candidate for dialysis. A kidney transplant was thought to be his only hope of life: that was what the proceedings were all about.

However, doctors at the separate hospital where any transplant operation would be provided were clear that being able to undergo haemodialysis was a pre-condition for any patient having a kidney transplant. An independent expert instructed by Jordan’s parents agreed that haemodialysis was not an option.

That might well have been the end of it.  However, at a hearing in April, the dialysis team, the transplant team, the Learning Disability team, Jordan’s parents and the legal teams worked together to craft a way forward.

The full episode, hosted by Christopher Johnston KC featuring Tom O’Connor is available here.

In this episode, Christopher Johnston KC is joined by Tom O’Connor, Clerking Team Leader at Serjeants’ Inn Chambers. Whilst Tom is not an author of Medical Treatment: Decisions and the Law, he plays a key part in the work mentioned in its chapters.

Together they discuss the journey of a Court of Protection case, with a particular focus on urgent/out-of-hours matters, and what led Tom to his interest in the Court of Protection. The discussion offers insight into the process of making an emergency application to the court and points for counsel and clients to consider along the way.

This podcast is also available on Spotify and Apple Podcast.