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Medical treatment disputes and a patient's best interests? Court rules boy with kidney disease should be allowed potentially life-saving transplant

By Liz Davis and Emily-Jo Moore, medical treatment dispute and human rights lawyers at Irwin Mitchell

Recently Mrs Justice Arbuthnot decided in the Court of Protection that a teenager should have potentially life-saving treatment by way of a kidney transplant.  

The background

The case concerned William Verden, a boy from the Lancaster area, who has a rare kidney disease and is currently being kept alive through dialysis. William (pictured with his mum) was diagnosed with a complex learning disability in 2012. He has since had diagnoses of moderate to severe learning disabilities with autistic spectrum condition and ADHD with accompanying behavioural disturbances.

In November 2019, William showed signs of kidney failure and on 30 December, 2019, he was diagnosed with a disease called focal segmental glomeruloclerosis (FSGS) and steroid resistant nephrotic syndrome (SRNS). As a result of SRNS, William was initially treated through peritoneal dialysis at home. 

Following infection in September 2021, clinicians recommended that William be treated with haemodialysis as an inpatient.  Haemodialysis must be provided via a line for four hours per day, three days per week. Without haemodialysis, William would succumb to his illness within a couple of weeks. Despite his illness, William continues to have a good quality of life, playing golf, attending school and doing jobs for his family around the house.

Due to William’s autism, he initially struggled to adapt to the haemodialysis, exhibiting challenging behaviour and picking at his dressings. As a result, his lines had to be replaced on a number of occasions. This treatment is dependent on venous access, which is limited, and in around November 2021 William’s mother, Ami McLennan, was informed that her son would have at most 12 months to live before the line access would run out and William would no longer be able to receive dialysis.

What's in William's best interests?

William’s treating clinicians initially considered it to be in his best interests not to receive active treatment and instead have palliative care. The clinicians at the Manchester University NHS Foundation Trust also took the view that William would not be able to cope with the aftercare required for a kidney transplant. 

William’s diagnosis of FSGS means that the disease may recur in a transplanted kidney. If the disease were to recur then William would require much more invasive treatment, including plasma exchange. 

Ami disagreed with the Trust’s decision and requested that the Trust make an application to the Court of Protection to decide whether William should continue to receive haemodialysis and whether it is in his best interests to undergo a kidney transplant.  

Complex case heard in Court of Protection

This was a complex case and Arbuthnot J heard evidence from doctors, both treating clinicians and independent experts, as well as William’s mother,  and also met William himself during the four-day hearing. 

In hearing all of this evidence, Arbuthnot J had to consider whether it was in William’s best interests to undergo a kidney transplant or whether the harm to him from a transplant and the post-operative treatment was greater than the continuation of haemodialysis until venous access was no longer possible. 

It was argued by William’s mother that this was William’s only chance and without it he would have just 12 months to live. The Trust put forward submissions that William’s autism would make the operation and subsequent aftercare too risky and harm his quality of life. The Trust submitted that although its position was not that William should not have the operation, it was for the court to decide.

Relevant legislation considered

In order to assist with her decision, Arbuthnot J considered the relevant legislation as set out in s.4 of the Mental Capacity Act 2005, particularly subsection one, that “the person making the determination must not make it merely on the basis of (a) the person’s age or appearance or (b) a condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about what might be in his best interests”.

Further reference was made to William’s rights that are protected by the European Convention on Human Rights, particularly Article 2 (right to life), Article 3 (protection from inhuman or degrading treatment) and Article 8 (the right to respect for a private and family life).

Arbuthnot J cited the leading case on the application of the best interests’ criteria: Aintree University Hospitals NHS Foundation Trust v James. In this case Baroness Hale said “the purpose of the best interests test is to consider matters from the patient’s point of view…insofar as it is possible to ascertain the patient’s wishes and feelings, his beliefs and values or the things which are important to him, it is those which should be taken into account because they are a component in making the choice which is right for him as an individual human being.” 

Throughout her judgment, Arbuthnot J made it clear that she must consider “welfare” in the widest sense, consider the choices available from William’s point of view and ultimately decide what William would want.   

Opportunity for transplant in William's best interests

After considering the relevant case law, legislation and representations and evidence of the parties, Arbuthnot J decided that it is in William’s best interests to have the opportunity to have a potentially life-saving kidney transplant. 

Arbuthnot J noted that William’s mother “is a doer who fights for her child” and in conclusion that “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…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.”

Reaction to judgment

Following the hearing, Liz Davis, representing Ami said: “Naturally as a parent all Ami wants is to offer her son the best chance in life; she strongly believes a transplant will give William this. 

"This is an incredible sensitive case which has prompted a really important discussion not only about William’s care but also about the wider issue of providing medical treatment to people with autism and learning disabilities. We’re pleased that the judge has ruled in William’s favour and understandably Ami and the family are overjoyed.”

Ami said “We adore William and all we want is for him to live the best life he can. At present I firmly believe that this won’t be possible unless he can receive the care he desperately needs and deserves. Bringing a legal case isn’t something we ever wanted or thought we would need to do, however, William’s situation is critical and could mean the difference between life and death.” 

Donor appeal launched

Alongside this legal challenge William’s family have launched an appeal to seek possible donors and through the media campaign members of the public have expressed a wish to potentially becoming a donor. More information about becoming a donor or on how to register can be found on the NHS Blood and Transplant website.

Irwin Mitchell represented the Second Respondent in this case.

Find out more about Irwin Mitchell’s expertise in handling medical treatment disputes and human rights cases at our dedicated protecting your rights section.

Mrs Justice Arbuthnot’s full judgment is also available online.