A former UKIP MEP is leading a campaign to change the law in the wake of the Alfie Evans case.
Steven Woolfe has teamed up with the right-wing think tank Parliament Street to launch the Alfie’s Law campaign, which is calling for families to have more power to decide on their children’s medical care.
Now an independent MEP, he appeared on Good Morning Britain this morning to launch the campaign.
Outside Parliament earlier today, he said: “Parent’s rights should neither be ignored nor dismissed as irrelevant by hospitals and courts, who believe they know best and have the power, money and resources to overwhelm families who simply want to save their child."
Woolfe, and other commenters on social media who’ve taken an interest in the case have compared it to that of Ashya King.
Ashya was suffering from a brain tumour called a medulloblastoma, and in 2014 his parents took him abroad against hospital advice.
They became the targets of an international manhunt, and were initially imprisoned in Spain before the High Court granted them permission to take Ashya for proton therapy in Prague.
His father Brett King told Sky News in March that Ashya was close to being given the all-clear.
“The comparisons [between Alfie and Ashya’s case] are understandable because they’re all cases where the disagreements have been very public,” says Professor Dominic Wilkinson, Consultant in Newborn Intensive Care and Professor of Medical Ethics, and a member of the Ethics and Law Advisory Committee at the Royal College of Paediatric and Child Health.
“However the circumstances are very specific and quite different.
“From a legal and ethical perspective, the fundamental question is what’s best for the child.
“In the Ashya King case, the parents’ desire to travel overseas for treatment was permitted and endorsed.
“The only reason the court became involved was because they left the country suddenly and concerns about Ashya’s welfare [were raised].”
Priscilla Alderson, Emerita Professor of Childhood Studies at University College London, pointed out that a fundamental difference in the cases was that, in Ashya’s case, treatment was available and his condition was known.
“The Ashya King case was unusual in that beneficial treatment was available but not, at that time, through the NHS,” she told us.
“NHS care has to be rationed because need far exceeds resources.”
Professor Wilkinson said the lobby group behind Alfie’s Law “have not liaised with paediatricians or policy makers or indeed with other families who’ve been involved in these cases.”
He said that conversations had been happening “behind the scenes” between parents who’d been in a similar situation, medical experts, and policy-makers.
"I am aware that recent months there have been some very constructive and sincere attempts from families who’ve been through similar to engage with paediatricians and policy makers to try and improve the situation and prevent future families from going through what they went through,” he said.
Professor Alderson was critical of the campaigns to ‘save Alfie’.
“These parents have not only to cope with the tragedy of having an extremely ill child who is likely to die soon, but also with attracting a crowd of ‘supporters’, many of whom do not have the child’s best interests at heart,” she said.
“They include critics of state care and the NHS. The motives of the various groups who are paying for Alfie’s parents’ legal fees and the plans for his medical treatment abroad need to be examined and publicised."
Alfie's life support was withdrawn on Monday April 23, but he is currently breathing unaided and remains in Alder Hey hospital.