A legal challenge against a Hospital Trust’s decision not to offer a Lancaster teenager a potentially life-saving kidney transplant is set to start today.
William Verden has a rare kidney disease and is currently being kept alive through dialysis. However, the 17-year-old has been told that he only has at most 12 months before dialysis will stop working.
His family, including mum Amy McLennan want the youngster to be able to undergo a potentially life-saving kidney transplant. They have launched an appeal seeking possible donors, with a number of people coming forward wanting to help.
However, Manchester University NHS Foundation Trust has said that William should not be offered a transplant.
Amy, 45, believes the decision not to offer William a transplant has been made because he sometimes finds dealing with medical treatment difficult due to his autism.
Following the decision she instructed specialist medical treatment dispute and human rights lawyers at Irwin Mitchell to launch a legal challenge against the Trust’s decision.
The Court of Protection is now due to hear the case. A judge will be asked to decide whether or not it is in William’s best interests to undergo a transplant. A hearing is due to at Liverpool Civil and Family Court today (Monday) and is due to last four days.
Liz Davis the specialist lawyer at Irwin Mitchell representing Amy, said: “This is a really emotive case which has prompted a lot of debate not only between Amy and the Trust, but generally about provision of medical treatment to people with autism and learning disabilities.
“Understandably all Amy wants is what any parent would – to be able to provide the best opportunities for their child.
“While Amy and the Trust have continued to try and work together to find an agreement this is an incredibly important and time-pressing issue so the courts are now being asked to make a judgment as to what’s in William’s best interests.
“Any has been blown away by the messages of support she has received from the public and those who have come forward to register an interest in becoming a donor. We continue to support Amy through this emotional time and are determined to ensure her voice is heard.”
William, who has autism and attention deficit hyperactivity disorder, was diagnosed with the kidney condition focal segmental glomerulosclerosis in December 2019.
FSGS affects around seven in every million people, attacking the kidneys’ filtering units, causing scarring that leads to permanent damage and, sometimes, organ failure. William’s current kidney function is around five per cent.
He is under the care of Manchester Children’s Hospital which is run by Manchester University NHS Foundation Trust. William was initially on steroids but by May 2020, having reached end-stage kidney failure, he was having dialysis via his stomach at home 10 hours a day, six days a week.
Following tests Amy, William’s dad, Will, 44, and other relatives were not deemed to be suitable donors, prompting the family’s appeal.
A number of people have now come forward seeing if they can help William. As investigations start to assess suitability the family want to hear from other potential donors.
An expert instructed by the family and the hospital believes a kidney transplant has a 50 per cent chance of curing William’s disease and giving him a normal life.
Amy said: “Of course we’d rather not be in this position but we feel we’ve been left little option but to take this course of action. William is a fantastic lad and despite his illness leads an active life, enjoying many of the things boys his age do.
“We feel that the decision not to allow him the opportunity of a transplant is premature and wrong. We can’t thank enough everyone who has contacted us since they found out about William’s situation.
“It’s amazing and humbling to know so many people care about William. The decision on whether William should be able to have a transplant really could the difference between life and death.
“We believe that with a new kidney William could continue to thrive.”
A spokesperson for Manchester University NHS Foundation Trust, which manages the Royal Manchester Children’s Hospital, told Beyond Radio: “We recognise that this is a very difficult time for William and his family and we will continue to support them.
"Our clinicians have worked very hard to enable William’s treatment to take place so far, and he continues to have his haemodialysis, as agreed with his family, subject to any change in his clinical condition.
"The decision on whether a transplant would be in his best interest is a very complex one, requiring consideration of a range of very difficult issues including significant risks and the possibility that his transplant would fail, which is why the Court of Protection is being asked to make a decision on the best care for William going forward.”
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