A judge overseeing a court of protection case has ruled that William Verden, a 17-year-old boy with learning disabilities, ADHD and autism should be allowed to have a kidney transplant despite medical professionals saying it was probably not in his best interests to be treated.

The court held that William lacked mental capacity to conduct the proceedings and make decisions about his medical treatment as a result of his learning disability – which was described in the judgment as moderate to severe – and his ADHD and autism.

William’s mother advocated for him throughout this period and opposed Manchester University NHS Foundation Trust’s application which asked the court to decide whether treatment should go ahead. This is what Mrs Justice Arbuthnot said about her:

“The first respondent [William’s mother] attended each day, I was struck by her dignity, I noted the way that she had advocated for her son in every way she could from the moment it was clear he had learning disabilities.”

“The mother is a ‘doer’ who fights for her child. An example of this was that Ms McLennan recognised that what William really needed was a kidney from a live donor, so she launched a public appeal to find an altruistic donor to ensure her son had the best chance of living. William is very lucky to have the family he has, and they feel lucky to have him,” she said.

This is a complex case filled with a lot of medical concerns but essentially the health professionals argued that the transplant came with an increased risk of physical and psychological injuries including disease recurrence, sepsis, pneumonia, catheter-related infections and PTSD.

During the hearing, Manchester University NHS Foundation Trust’s Clinical Ethics Committee, which met to discuss William’s case, was criticised by the barrister representing William’s mother. The judgment said:

“Ms Butler-Cole QC was critical that the parents’ views had not been taken directly by the Committee whilst a number of clinicians had attended to give theirs. It did seem to me that a better approach might be to have a meeting which is divided into two parts, one where the parents attend to give their views and the second when the clinicians attend. The Ethics Committee would then have a better idea of William’s quality of life, his wishes and the position of the family.”

After listening to the submissions, Mrs Justice Arbuthnot decided it would be in William’s best interests to have the kidney transplant:

“In my judgment, considering the choices from William’s point of view, his family and sport are important to him, he wants to be able to continue playing kerby into the future. The transplant is not futile and although the chances are it will lead to an increase in William’s suffering in the short to medium term, it has the commensurate benefit which is that there is a chance for William of a long-term survival, if the transplant goes ahead.”

The judgment is worth reading if you are interested in the law used in this case and the granular details of the case itself, but what really caught our attention beyond the judge’s family-focused, sensitive and intelligently reasoned judgment was the wonderful picture she painted of William, and of his warm and loving family:

“William lives at home with his mother, his father, Will and his sister, Ruby. He also has an older brother Levi. There is an extended family including grandparents, and an aunt. William is described by his mother as being at the “heart” of the family. William uses respite care for one to two nights per week and there are overnight carers to support William and his family at home four nights per week as William suffers from disturbed nights and poor sleep.”

“[William’s] first question to me [Justice Arbuthnot] was to ask when it was that he was going to have the operation. I said I was unable to answer that. He told me he was worried about people seeing the tubes he might have in his leg, feet and arms. He said he was scared about the operation and worried about the tubes getting knocked by children.”

“William told me he liked to play golf even though his arms hurt afterwards, football and kerby. I had never played kerby so he explained that it was played with others and involved kicking a football against the kerb. I noted William’s excitement when describing the game which he clearly enjoyed.”

“I saw how close he is to his family. Ruby, his 15-year-old sister, was in court the first day, Levi his adult brother was there the second. Levi had been in the hospital at William’s side for three days, 24 hours a day, to keep his brother company when an infection brought him into the hospital unexpectedly on 27th December 2021.”

You can access the judgment here.