Parents of gravely ill children could win legal right to seek treatment abroad under ‘Charlie’s Law’

Parents of gravely ill children could be given a legal right to seek treatment in foreign countries under a “Charlie’s Law” amendment to new legislation.

MPs and Lords want parents to have more say in life-or-death decisions taken by doctors treating their children. They want a new system of mediation in cases where doctors stand in the way of parents’ wishes, a right to additional medical opinions and to legal aid if the cases end up in expensive battles in the courts.

Significantly, the new law would also prevent judges from making orders stopping parents from taking a child abroad for treatment at any respected medical institution if there is no major risk of harm to them.

If the new law is passed it will represent a major victory for the parents of Charlie Gard, a baby boy who died in 2017 just before his first birthday following an unsuccessful High Court bid to allow him to be flown to the United States for pioneering treatment.

His mother, Connie Yates, told The Telegraph: “No parent should have to deal with the unimaginable hardship of losing their baby, let alone while fighting a highly public legal battle.

“The emotional stress was too much. It was unbearable. It’s fundamental that parents have the means to resolve disputes with clinicians responsible for the care of their child.

“We never want another parent to experience traumatising legal disputes with hospitals when they should be spending their precious time with their child, nor do we want clinicians to go through emotionally stressful litigation which is costly to the NHS, parents and Government”.

Charlie Gard, who died in 2017 just before his first birthday following an unsuccessful High Court bid to allow him to be flown to the United States for pioneering treatment

The proposals are contained in a House of Lords amendment to the Health and Social Care Bill tabled by Baroness Finlay of Llandaff, a professor of palliative medicine.

They will be debated in the Lords next week, though there is understood to be widespread support both in the Lords and in the Commons for the changes to be made legal.

Lady Finlay said she was optimistic about the likely success of the amendment because it would benefit both parents and the NHS alike.

‘No greater nightmare for a parent’

She said there could be “no greater nightmare for a parent” than having to fight the NHS in court over the treatment of a critically ill or dying child.

It can cause “a terrible conflict” in which the parents’ “energy is taken up in fighting as their trust in the clinical team responsible for their child’s care haemorrhages away”.

She said: “For the clinicians, their energy is diverted into a legal case, taking their attention away both from the child and from other children in their care. My amendment requires that independent mediation, acceptable to both sides, is offered early when such conflicts arise.”

Parents would not automatically win the right for their children to be given novel treatments, but the amendment “aims to rebalance the dialogue towards resolution rather than a legal battle”, said Lady Finlay.

Ms Yates and Chris Gard, Charlie’s father, raised £1.3million to take their son to the US for treatment after he was diagnosed with encephalomyopathic mitochondrial DNA depletion syndrome, an exceptionally rare genetic condition.

Charlie's parents with their petition outside Great Ormond Street Hospital, in central London, in 2017

But Great Ormond Street Hospital won a ruling from the High Court preventing Charlie from being transferred, arguing that cessation of life-sustaining treatment was in the child’s best interests.

He died three months later following subsequent appeals to higher courts and the European Court of Human Rights. The Pope and Donald Trump, then US president, both attempted to intervene on the parents’ behalf.

The following year the parents of Alfie Evans, a baby with a neurodegenerative disorder, were embroiled in a similar battle in the courts after the Alder Hey Children’s Hospital in Liverpool persuaded judges to block their attempt to take him to Rome to be treated there. 

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