Parents of gravely ill children could be given a new right to seek treatment in foreign countries under a “Charlie’s Law” amendment to the Health and Social Care Bill.
Proposals tabled in the House of Lords seek to make it easier for parents to be part of the life-or-death decisions taken by doctors treating their children.
The measures include a new system of mediation, a right to additional medical opinions, and to legal aid if the cases end up in expensive battles in the courts.
Significantly, the amendment also seeks to prevent judges from making orders stopping parents from taking a child abroad for treatment at any esteemed medical institution if there is no significant risk of harm involved.
If accepted, the amendment will represent a major victory for the parents of Charlie Gard, an infant who died in 2017 following an unsuccessful attempt to persuade the High Court to allow him to be flown to the United States for pioneering treatment.
The boy’s parents, Connie Yates and Chris Gard, welcomed the amendment.
Connie said: “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.”
She said: “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”.
The amendment, tabled by Baroness Finlay of Llandaff, a professor of palliative medicine, is due to be considered by peers when the Bill, aimed at restructuring the NHS, reaches Committee Stage in the Lords this week.
Baroness Finlay said she was optimistic about the likely success of the amendment because it would benefit both parents and the NHS alike.
She said there could be “no greater nightmare for a parent” than having to fight for the life of a critically ill or dying child and who may look abroad for therapies under development only to find that treating clinicians may disagree.
This, she said, can lead “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.
“In today’s world we know our clinical services are already overwhelmed, even without the distraction of a complex legal case. And such a legal case can prove incredibly costly to the NHS as well as the family.
“My amendment requires that independent mediation, acceptable to both sides, is offered early when such conflicts arise.”
Baroness Finlay said: “Some treatment interventions turnout to not be a benefit even though they were well intentioned, so it is important there is no evidence that significant harm is anticipated. The amendment does not mean parents can demand an intervention if the clinicians feel it is futile.
“But it aims to rebalance the dialogue towards resolution rather than a legal battle. After all, parents want to know they tried everything and that nothing was overlooked – they carry the memory of their child’s illness for the rest of their lives, a memory that is easily tainted by legal conflict and eased by calm resolution.”
Ms Yates and Mr Gard raised £1.3million to take their son to the US after he was diagnosed with encephalomyopathic mitochondrial DNA depletion syndrome, an exceptionally rare genetic condition.
His health swiftly deteriorate and soon he became so ill that he could breathe only assisted by a ventilator.
His parents, from Bedfont in west London, did not give up hope, however, and wanted Charlie to have an experimental treatment called nucleoside bypass therapy, and found a hospital in America which agreed to make the treatment available.
But the 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.
Charlie died three months later at the age of 11 months, 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 the Bambino Gesu Hospital in Rome to be treated there.
Alfie’s medical treatment was withdrawn on April 23 and he died five days later, prompting an outcry from the public.
In 2019, Tafida Raqeeb, a five-year-old London girl who suffered a massive bleed on the brain, was, however, allowed to be transferred to Genoa, Italy, for treatment after her parents defeated the NHS in the High Court.
Barts Health NHS Trust, which runs the Royal London Hospital, where Tafida was being treated, applied to the court for permission to remove her ventilation and other treatment with the intention of bringing about her death, arguing that such an outcome was in the girl’s best interests since she was beyond help.
Mr Justice MacDonald rejected the case, saying it was right that difficult decisions were to “be taken by a parent in the exercise of their parental responsibility”.
Shortly after Tafida was flown to Italy, where she is undergoing rehabilitation, her mother, Shelina Begum, demanded changes to the law to make it fairer to families like her own.
“I remember reading about those other cases – Charlie Gard and Alfie Evans – and thinking that parents should be allowed to have the final say,” she said at the time. “Tafida might be profoundly disabled but her life is still of value.”
Cross party support for Charlie’s Law has been already demonstrated in the House of Commons and the amendment is widely expected to be supported there.
Bambos Charalambous, the Labour MP for Enfield Southgate, tabled a similar amendment as a 10-minute rule motion in March 2020, and he received support from MPs including Conservatives Sir Roger Gale and Victoria Prentis; Emma Hardy, Grahame Morris and Seema Malhotra of the Labour Party, and Paul Girvan of the DUP, among others.
Mr Charalambous also later met with former Health Minister Helen Whately who expressed interest in his amendment.
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