A mother who won the right for her autistic son to receive a kidney transplant says she wants the case to “set a precedent”.
Ami McLennan fought medics who said giving son William, 17, a transplant was futile.
William Verden, whose mum has won the right for him to have a kidney transplant
William, who also has attention deficit hyperactivity disorder (ADHD) and a learning disability, is kept alive by dialysis at Manchester Children’s Hospital.
Learning disability ‘not a death sentence’
McLennan, from Lancaster, said the last six months had been “the worst” of her life in having to fight to keep her son alive.
She said having a learning disability “doesn’t carry a death sentence”.
William has steroid-resistant nephrotic syndrome.
His dialysis will stop working in around 12 months and the family is now looking for a kidney donor.
Transplant has 50 per cent chance
Medics believe a transplant offers a 50 per cent chance of success.
But they maintained it was almost 100 per cent certain that the disease would come back.
At the Court of Protection, Mrs Justice Arbuthnot ruled a transplant was in William’s best interests.
Dan Scorer is head of policy at Mencap.
He said people with learning disabilities are more likely to die “avoidably”.
Case reflects ‘inequality’ in health care
Mum Paula McGowan led a campaign for mandatory autism training for all NHS staff.
Her son Oliver, 18, died after he suffered an allergic reaction to antipsychotics. His family say medics should never have given them to him.
In McGowan’s view, William’s case reflects the “inequality” in health care for autistic, learning disabled and neurodiverse people.
People with learning disabilities and autism usually die 15 to 20 years earlier than the general population, research shows.
‘Sedation needed’
Medics argued William would suffer psychological harm from sedation and ventilation after the operation.
They said the sedation was needed to prevent him from removing lines and catheters.
But McGowan questioned whether the hospital would have made this argument for a “neurotypical” person of the same age with anxiety and agitation.
A spokesperson for Manchester University NHS Foundation Trust said: “Our teams are very experienced in caring for children with autism and have supported children with autism, ADHD and learning disabilities through transplants previously. We reject any allegations of discrimination, and there was no suggestion of this in the court’s judgement, which involved extensive consideration of all of the evidence from William’s family, independent experts and our clinicians.”
Toli Onon is the joint-group medical director for the Manchester University NHS Foundation Trust, which runs the children’s hospital.
She said the Trust would now liaise with William and his family over his treatment.
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Published: 24 March 2022
