For Amy McLennan, it has felt like taking on the full might of the medical establishment – and it was never going well. “I thought we were going to lose. Up against the NHS? Of course I did.”
Defeat, she said, would have been a death sentence for her 17-year-old son, William Verden.
William, who is autistic and has ADHD and learning disabilities, needs a kidney transplant to have a chance of life. That was opposed by doctors for a number reasons, including the risk of him pulling out tubes.
His mother fought tooth and nail for him to have the chance of a transplant. Last week a high court judge ruled that a transplant was in William’s best interests.
It is a story about William but it is also, the family’s lawyers say, a wider one about the medical treatment given to autistic people and people with learning disabilities.
For McLennan, the experience has been exhausting. “It has been horrendous, it has been the worst six months of my life,” she said. “You put your trust in doctors because they’re doctors. My advice is just because people are professionals, if you don’t feel it’s right then it’s not right, listen to your gut.”
She added: “If I’d have listened to them, William would have been sent home in September and had palliative care, and he would have been dead.”
Clinicians say William’s case is complex. But for McLennan it is simple. “He’s got learning difficulties. It is about life, it’s a human right,” she said.
Using the phrase used at the court hearing, she added: “If he was a ‘neurotypical’ child, he would already have had a transplant or been on the transplant list.”
She said William was the heart and soul of the family home in Lancaster, also shared with his father, Will, his sister Ruby and their puppy Betsy.
“He is cheeky,” she said. “He is really kind, he is really helpful. If he can help you, he would do it all day long. He loves power washing, he loves cleaning. I’ve got OCD and he’s getting there. He loves painting walls. He loves going for walks. He loves anything where he can be helpful.
“He loves going to school, although he’ll correct me – it’s college. He’s loud. He loves loud music, he loves Michael Jackson, he loves Annie Lennox, he loves Fleetwood Mac.”
It is tough bringing up a child who has been dealt the cards William has, but McLennan says she learns every day. “I get up more times than I’m knocked down.”
It was William’s 17th birthday in January. “I thought it was going to be his last one so I asked him what he wanted and he wanted a party.”
They hired an inflatable nightclub and everyone had a great time. “I really thought it was his last birthday. I look at him sometimes and I just want to cry. He says: ‘What you crying for?’”
William was diagnosed with a rare kidney disease, steroid resistant nephrotic syndrome, in December 2019. He had home dialysis, which stopped working in September last year, said McLennan.
That was when palliative care was first raised. “There was a huge meeting and I begged them to give him a chance. I had to beg … I was crying, I was absolutely heartbroken. I don’t see why I should have had to fight for everything everyone else is entitled to.”
Medically and psychologically, William’s case is unquestionably a complex one, with issues over sedation and ventilation. The case was heard at a hearing of the court of protection, which considers cases relating to people who lack the mental capacity to make decisions.
The judgment by Mrs Justice Arbuthnot runs to nearly 12,000 words, and references William being big and difficult to manage physically. She talks of her pleasure at meeting William face to face and hearing how he loved kerby – kicking a ball against the kerb. “I noted William’s excitement when describing the game which he clearly enjoyed,” the judge writes.
The judge agreed that the care provided for William at Manchester children’s hospital had “clearly been exceptional”. She added: “It was clear from all the evidence that the trust and the clinicians treating William have been agonising over what is in William’s best interests.”
The judge said it was “a case of what is the least bad decision for William”.
The decision was welcomed by Manchester University NHS foundation trust. Its joint group medical director, Toli Onon, said the case was “unusual, complex and risky”.
William’s condition was rare and each treatment option had its own risks to his health and wellbeing, she said. “That’s why we asked the court to make this difficult decision, and why the judge noted that she respected our approach to establishing what’s best for William. William, his family and our staff have all worked really hard together to support his dialysis; and we will now be liaising with William and his family regarding how best to progress his treatment.”
A trust spokesperson said: “We recognise that this is a very difficult time for William and his family and we will continue to support them following the judgment. 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 judgment, which involved extensive consideration of all of the evidence from William’s family, independent experts and our clinicians.”
The road ahead is a fraught one, with the chances of transplant success estimated at 50%. McLennan says she has been buoyed up by the support she has received from other parents of children with learning disabilities.
“This hasn’t been about winning,” she said. “It is about what is right. Hopefully it will set a precedent for other cases involving children and adults with learning difficulties.”
