The controversy over Alfie Evans, a 23-month-old boy whose parents have been forbidden from taking him abroad for treatment, has provoked a debate over the law in such cases.
Now the parents of the late Charlie Gard, who died aged eleven months after a similar legal dispute, have launched a campaign to change the law.
In a statement, Chris Gard and Connie Yates said they had watched Alfie’s case with “heavy hearts”. “For those who have not been in a situation like this, it is impossible to understand the pain Tom and Kate [Alfie’s parents] are going through,” they said.
Gard and Yates said that when Charlie was ill and seeking treatment, they “realised that cases like these would keep happening until the law was changed”.
Alfie Evans is being treated at Alder Hey hospital, Liverpool, whose representatives argue that it is in the boy’s best interests to be placed on an end-of-life palliative care plan. Alfie’s parents repeatedly challenged the decision, and another hospital, the Bambino Gesù in Rome, has offered to treat Alfie. But the High Court, Appeal Court, Supreme Court and European Court of Human Rights have all rejected this alternative.
In Charlie Gard’s case last year, Great Ormond Street Hospital objected to the baby being taken to the US for treatment. Again, the parents lost repeated court cases, thanks – they say – to a legal protocol which is creating “unnecessary conflicts” between parents and medical professionals.
The parents say they have been working with “paediatric consultants, medical ethicists, senior lawyers, UK politicians and other parents who have suffered through similar situations” to craft a better protocol.
The proposal has not been published in detail, but it appears to have two parts. First, the law would be revised. It currently asks judges to decide on a child’s “best interests”, giving parents little voice in the process.
Secondly, Gard and Yates suggest improved mediation between parents and doctors, to create “a platform for transparency and openness so that cases like these can be dealt with before they ever reach the courts”.
The proposal has so far been called “Charlie’s Law”, and a website is under construction.
Yesterday the MEP Steven Woolfe launched his own, apparently unrelated, campaign for “Alfie’s Law”.
Gard and Yates said in their statement: “We would ask those pushing for law change to take account of the careful work already done, and join us as we continue to push for a solution that is best for all involved.”