Behind the headlines: upholding the value of a disabled life

 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.

New Podcast: Season 1 Episode 3 Clerk’s Perspective: Serious Medical Treatment cases

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.

Autonomy above all else

Cambridge University Hospitals NHS Foundation Trust v RD [2022] EWCOP 47 (17.10.22)

There is no new law in this tragic case – but what does stand out is the judicial approach that puts the person’s autonomy at the heart of the decision, even where the exercise of that autonomy would, almost certainly, lead to the person’s death.

It must be a very rare case where an adult who at times does not have capacity to accept or refuse life-saving treatment, and who has expressed a will to live, is allowed to pursue a course that will lead to their death, but that was the outcome here.

The background

Ms D’s story is a tragic one.  At only 26 years old, she already had a long history of mental health difficulties, and had spent significant periods of her life in psychiatric units since the age of 15. The impact of her adverse earlier experiences upon her mental health had been profound and long lasting.  She had been diagnosed with Emotionally Unstable Personality Disorder and Post Traumatic Stress Disorder (‘PTSD’), and at some points exhibited psychosis.  Her complex diagnosis was accompanied by a long history of extremely serious life threatening self-harm; she inflicted significant injuries to her neck, requiring numerous admissions to an Intensive Care Unit. She had undergone a tracheal reconstruction in February 2022 but subsequently cut her own throat again in June 2022, requiring emergency surgery and leaving her with a tracheostomy in situ.

When in hospital, she would interfere with her tracheostomy tube if her sedation was either withdrawn or reduced.  She could only be prevented from interfering with the wound by using chemical or physical restraint. Eventually, with the support of the psychiatric team, sedation was lifted and the tracheostomy tube was removed in early July 2022 so that she could be discharged to a supported housing placement for people with mental health difficulties. Sadly, this community placement did not last long.  By the end of the same month Ms D was back in hospital, with such a severe self-inflicted further neck injury that she now faced life with a permanent tracheostomy and was unlikely to be able to talk again.

‘Just and convenient’ to give injunctive relief in the Court of Protection

Re G (Court of Protection: Injunction) [2022] EWCA Civ 1312  (here)

The Court of Appeal has helpfully clarified the legal test to be applied in the Court of Protection (‘CoP’) when considering an application for an injunction.

The Background

G, a 27-year-old woman who suffers with serious progressive disabilities had, since the age of 13, been an inpatient in a paediatric hospital operated by the NHS Trust. In December 2021, Hayden J found that it was “irreconcilable with her dignity” for G to remain in a paediatric ward and so declared that it was in her best interests to be discharged to a specialist care home (see judgment here). Her parents and grandmother, who wanted G to live at the family home, opposed G moving to the care home.

The Trust and CCG[1] believed that the parents and grandmother were making determined efforts to frustrate G’s transfer and so applied for an injunctive order binding them to the terms of a behavioural framework. When the matter came before Hayden J he granted injunctive relief in respect of all three adults.

The parents and grandmother appealed that order arguing, amongst other grounds, that the Vice-President had been wrong to adopt and apply the test of “necessary and expedient”, found within s.16(5) Mental Capacity Act 2005, as the basis for granting the injunctions.

New Podcast: Season 1 Episode 2 Assisted Reproduction

The full episode, hosted by Christopher Johnston KC featuring Claire Watson KC is available here.

In this episode, Chris and Claire discuss medical treatment decisions related to assisted reproduction, as discussed in chapter 11 of the new fourth edition of Medical Treatment: Decisions and the Law.

Chris and Claire look at XX v Whittington Hospital NHS TrustWarren v Care Fertility Ltd and the recent case of Jennings v HFEA while discussing the difference between Californian surrogacy versus UK surrogacy, the interpretation of legislation by judges in line with article 8 of the Human Rights Act and the exporting and importing of gametes.

This podcast is also available on Spotify and Apple Podcast.