“A lively personality” in a complex medical case: Jordan Tooke and haemodialysis (with postscript)

By Daniel Clark, 13 May 2023 (and Postscript about the Inquest, 28th March 2025)

This case (COP 14013508) concerned serious medical treatment: namely, whether it was the protected party’s best interests to have a kidney transplant. Originally, as is usual in the COP, this person’s name was banned from publication. That was later lifted: his name was Jordan Tooke.

The hearing was replete with complex medical evidence provided by a range of specialists, and the medical evidence has been summarised and discussed in an earlier blog post: The most complex of best interests: Organ donation, learning disability, and the options on the table.

It would be easy for the protected party at the centre of this case to ‘go missing’ amongst a sea of expert opinion. However, I was struck how diligently the judge (Hayden J) worked to ensure this did not happen. Indeed, this hearing was the first time I’ve seen a protected party ‘come alive’ in a hearing despite their absence in court. 

The judge’s commitment to discovering who Jordan is was evident during an exchange with one of the Consultants. Towards the end of his evidence, the judge asked the Consultant for his view of Jordan: his personality, who he gets on with, and how he “enjoys life”. The Consultant’s response was that Jordan enjoys life “in its current form… It will be different if he is coming to hospital for haemodialysis.” This is because Jordan “hates” the hospital environment, and going to hospital regularly (as is required of somebody receiving haemodialysis) “would be very distressing”. This was not, however, what the judge wanted to know, replying that “I’m trying to bring you away from the medical and look at the patient… the man who enjoys life would want to have the best shot at maintaining it”. 

The expert evidence

To me, this speaks to an inherent tension between the medical model and a more holistic social model. This is not to say that this doctor did not want what was in Jordan’s best interests; rather that he saw the situation through the lens of Jordan’s relationship with medical treatment. As a result, Jordan the person was just out of view. The judge, on the other hand, was attempting to transcend the strictly medical, and seek an understanding of how Jordan’s personality could instruct us what his views might be if he were able to express them. 

Jordan’s parents

Both parents had joined the hearing via video link, and throughout the hearing the judge ‘checked in’ with them to ensure that they were able to hear and follow everything. They had one camera and it was the mother who took the lead role, but the judge ensured that both were ‘affirmed’ (i.e. made the statement that they would tell the truth, the whole truth and nothing but the truth), so that “if he [Dad] wants to chip in he can”.

The judge started by asking for “a pen portrait” of Jordan. His mother explained that “he’s quite a bubbly young man. He likes to interact and laugh…Not one single carer has said other than that he’s a wonderful young man. He seems to have a light, a personality – even though he can’t talk it just seems to shine through”. He enjoys spending spend time at a day centre and, when he’s home, he relaxes “like most of us”. 

Jordan also likes people watching, both at home and whilst out-and-about, and enjoys looking at street scenes on his iPad. He also enjoys watching videos of Boris Johnson and Piers Morgan, which the judge jokingly referred to in his judgment. 

The judge was particularly keen to understand in what ways Jordan can be affectionate, with his mum explaining that “some people he just really takes to and really loves”. He’s often affectionate to his mum but not so much with his dad, who explained that Jordan’s affection disappeared when he became a teenager (prompting the judge to joke that it sounded like perfectly normal teenager behaviour). However, Jordan does hug his dad when is unwell or in hospital, and his dad feels this shows that he is clearly a safe space for him in those times. 

Jordan’s mum explained that Jordan tolerated a RIG (insertion of a feeding tube) following desensitisation work with a specialist team, and continues to deal well with the site being cleaned. As she put it, “it’s beyond all my expectations of what he would’ve coped with”. Ultimately, this suggested that further work could be done to try and help Jordan tolerate the process of haemodialysis, and his mother would do research to see what could help keep the tube safely in place (as she had done following the RIG). 

Two things were apparent during the course of Jordan’s parents giving evidence. The first was that the judge was clearly eager to ensure that they both felt comfortable and relaxed in what can be an intimidating environment. He made jokes with them, was obviously interested in hearing about their son, and made frequent references to videos of Jordan he had been sent. The whole exchange was an exemplary demonstration of making somebody who was absent feel very present.

The second thing was that Jordan enjoys life. He’s supported by loving parents who help him to live as well as possible, and want to keep that up for as long as possible. His mum said that “if it doesn’t work it doesn’t work. But we have to try our best”. 

In his oral judgment, the judge placed Jordan front-and-centre. As the judge put it, ‘descriptions of Jordan are not simply a backdrop. They are the way in for the professionals, the Official Solicitor,  and the Court to understand something of what Jordan himself would want’.

The judgment

The judge stated that Jordan ‘is able to communicate in a variety of ways, through his behaviour, through his expressions, through his demonstration of love, approbation and indeed disapprobation’. All of this makes it very clear that Jordan ‘is a young man who wants to live. He has created, with the support of his loving and devoted parents, a life that is full and fun‘.

The judge treated Jordan’s personality extremely seriously. To state what Jordan is like was not simply a tick-box exercise but a fundamental step to understanding what is in his best interests. Ultimately, the judge made me feel as though Jordan was present (in spirit) in the courtroom.

At the end of his judgment, in which he ruled that it was in Jordan’s best interests to continue with the desensitisation work to see if he will become able to tolerate haemodialysis, the judge referred to Jordan as “a lively personality” who’s “very fortunate to have parents who are as loving and committed to him as you are”. For an observer, those two things were very clear to see. 

Note: Later, Jordan’s condition deteriorated and in a subsequent judgment, the judge authorised haemodialysis. The judgement is published here: Norfolk and Norwich University Hospitals NHS Foundation Trust & Ors v Jordan Tooke & Ors [2023] EWCOP 45

Postscript (28 March 2025)

Jordan Tooke sadly died on 31^st August, 2024, aged 30. His inquest was heard at County Hall in Norfolk on Tuesday 18th March 2025. Bonnie Venter, who had observed the earlier Court of Protection proceedings (and blogged about them here: The most complex of best interests: Organ donation, learning disability, and the options on the table), was able to observe the inquest remotely. The link was sent the day before the inquest, and within two hours of her initial request. 

The court heard that, following the Court of Protection proceedings, Jordan was coping well on dialysis. He needed sedation and ventilation only for the first three months, and after that seemed to cope well with the procedure. At the time of his death, he was rather high on the transplant list too. 

His death occurred from unexplainable events. He went for a dialysis session in the morning, and then his mum saw blood on his back – this was indicative that the dialysis had disconnected. It appears as though a line from a dialysis machine became detached, causing an air embolism that triggered a fatal brain injury.

 There is no way to say how the line came to be detached but there is no way that Jordan could  have done  it – he was asleep and, unlike William Verden (another person with learning disabilities whose dialysis was also approved by an order made in the Court of Protection) had no history of ever pulling at his lines. The evidence before the court seemed to suggest that the detachment of dialysis lines does not happen often, and a Nephrologist who gave evidence said he has never seen a line come undone. The nurses who gave evidence also explained how the lines are connected, and said it was unexplainable.

At the start of the hearing, a letter from Jordan’s mum, Camilla Tooke, was read to the court. She expressed her belief that Jordan had experienced discrimination at the hospital because of his disability. She also questioned whether the doctors had done everything they could to prevent his death. The BBC reported on this aspect of the inquest: Mencap urges NHS to improve disabled patient care.

The coroner returned a verdict of accidental but natural death. His causes of death are multiple (hypoxic brain injury, air embolism, complications of Haemodialysis, and comorbidities from his underlying syndrome). It’s not expected that there will  be a Prevention of Future Deaths report issued.

Daniel Clark is a member of the core team of the Open Justice Court of Protection Project. He is a PhD student in the Department of Politics & International Relations at the University of Sheffield. His research considers Iris Marion Young’s claim that older people are an oppressed social group. It is funded by WRoCAH. He is on LinkedIn, X @DanielClark132   and Bluesky @clarkdaniel.bsky.social.