Mum's campaign for autistic son to undergo life-saving kidney transplant highlights medical treatment issues those with learning disabilities can face

We represented Amy McLennan in Court of Protection proceedings relating to her son, William Verden. 

William is 18-years-old has been diagnosed with moderate to severe learning disabilities with autistic spectrum condition. He also has ADHD with accompanying behavioural disturbances.

In November 2019, William showed signs of kidney failure and in December 2019, was diagnosed with a rare kidney disease focal segmental glomeruloclerosis (FSGS) and steroid resistant nephrotic syndrome (SRNS).  

William’s treating clinicians initially considered it to be in his best interests not to receive active treatment, including both haemodialysis and a kidney transplant. Instead they offered palliative care. 

Amy disagreed with the Hospital Trust’s decision and we represented her to request 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.

Judge rules kidney transplant in William's best interests  

On 8 March, 2022, following a four-day hearing at Liverpool Civil and Family Court, during which evidence was given setting out that William would be able to manage up to 14 days sedation and ventilation, if required, post-transplantation, Mrs Justice Arbuthnot found that it was in William’s best interests to undergo a kidney transplant.

Mrs Justice Arbuthnot relied on relevant legal authorities and found that: “William’s mother is a doer who fights for her child” as well as “from William’s point of view, his family and sport are important to him… 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.”

Donor kidney appeal leads to successful transplant

Unfortunately, William’s parents and other family members were not suitable donors. As part of the court proceedings, we were successful in allowing William’s name to reported by the press and draw up reporting guidance to ensure William was protected, which enabled Amy to engage in a campaign to find William an altruistic living kidney donor and steps were being taken to assess whether those who had volunteered were suitable.  

William was also placed on the deceased donor list and on 6 August, 2022, the family were made aware that a deceased donor match had been found and William underwent successful surgery the following day.

Part of the court proceedings were to ensure that a safe and agreed plan was in place which covered all eventualities following William’s kidney transplant because there was a risk the transplant may not be immediately successful, William’s disease may reoccur, and William would need further treatment.  

Following surgery, William underwent a sedation period, ultimately for 18 days due to complications. This was at the recommendation of independent experts and William’s treating clinicians and was agreed by William’s parents.  

We're happy to say that William’s transplant has been deemed a success. There has been no re-occurrence of the disease and William was able to tolerate the end of the sedation period well. William has been able to make a good recovery after the surgery and was able to send out an important message of thanks to the family of his donor.

Treatment issues faced by those with disabilities 

William’s case demonstrates the additional challenges those with learning disabilities and / or autism experience when diagnosed with serious medical issues that can impact the rest of their lives and require invasive treatment.

Although treatment options may be available to treat their specific disease, the added factor of their learning disability or autism, which may require personalised treatment, can result in barriers to those options where consideration is not given to how that individual can access the treatment. This case demonstrates the lack of immediate opportunity those with additional diagnoses face when accessing treatment.

Important lessons can be learned from William and his family’s experience concerning equality of medical treatment for those that may find themselves in a similar situation with a loved one.

What the law says

The Equality Act 2010 imposes a clear duty on public bodies to make reasonable adjustments for those who have, or are perceived to have, a disability as defined by Section 6 of the Equality Act 2010.

Reasonable adjustments in the context of accessing medical treatment may consist of:

• Access to specialised nurse input such as learning disability nurses or play specialists within a hospital environment 
• Creation of a positive behaviour support plan
• Consultation and close involvement of the individual’s family members
• Access to specialised equipment

When reasonable adjustments don't appear to have been made, then legal advice should be sought in case the decision not to make reasonable adjustments can be challenged.

Court of Protection's role in medical treatment cases  

Broadly speaking, if an individual, like William, is assessed as lacking capacity to make a decision for themselves regarding their medical treatment, then that decision must be made in their best interests.  

The Mental Capacity Act requires all professionals to consult with family members, as well as anyone else with an interest in the person’s welfare, when an adult lacks the mental capacity to make the relevant decision themselves.

Those interested in the welfare of someone who lacks capacity to make decisions regarding their medical treatment should always request a best interests meeting to be held with NHS professionals and other relevant attendees. This may include family members or advocates for the individual and is the opportunity to discuss and most often reach agreement about what is in someone’s best interests.

Sometimes it will not be possible to reach agreement. If there is still dispute as to what is in the person’s best interests, then an application should be made to the Court of Protection for a judge to consider the evidence and make a decision in the person’s best interests.  

Judge's guidance

Specifically in relation to serious medical treatment cases, Mr Justice Hayden, the Vice-President of the Court of Protection, has published helpful guidance on when an application regarding disputes about medical treatment should be brought to the Court of Protection.

This guidance demonstrates that those who are facing serious medical treatment issues as well as other diagnoses that may cause them to lack capacity to make decisions themselves, have the right to have their case heard in the Court of Protection even if there is not necessarily a clear dispute. 

It highlights that an application should be brought where the issues are finely balanced, there's a difference in medical opinion, a lack of agreement from those with an interest in the person’s welfare or a potential conflict of interest of those involved in the decision-making process.

Conclusion

As William’s case highlights, challenges in the Court of Protection can be successful and life-changing, where an individual has the opportunity for their options to be considered and analysed through a collaborative approach. This can include their treating clinicians, but also through court appointed independent experts, which allows the Court to explore new evidence on different treatment options, including those that have been previously ruled out by treating clinicians.

If you are concerned about how the medical treatment of an individual who lacks or is suspected to lack mental capacity is being pursued, then you can find out more about Irwin Mitchell’s expertise in handling medical treatment disputes and human rights cases at our dedicated protecting your rights section.