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Charlie Gard's parents have three weeks to challenge life support ruling Charlie Gard's parents have three weeks to challenge life support ruling
(about 7 hours later)
The parents of a sick baby boy have just under three weeks to decide if they wish to challenge a judge’s ruling that life support should be withdrawn from the infant, their solicitor has said. The parents of a sick baby have less than three weeks to decide whether to challenge a judge’s ruling that the boy’s life support should be withdrawn, their solicitor has said.
Contrary to reports, the parents of eight-month-old Charlie Gard, who has a rare genetic condition, have not yet decided whether they will appeal against Tuesday’s high court decision and have until 2 May to consider their options. The parents of eight-month-old Charlie Gard, who has a rare genetic condition, have until 2 May to decide on an appeal against Tuesday’s high court decision.
Specialists at Great Ormond Street hospital (GOSH) in central London told the court they believed it was time to stop providing life support for the baby and it was probable that Charlie was experiencing pain but unable to let anyone know. Specialists at Great Ormond Street hospital (GOSH) in central London told the court they believed it was time to stop providing life support for Charlie. In his judgment, Mr Justice Francis said “with the heaviest of hearts but with complete conviction for Charlie’s best interests” he would allow doctors to withdraw all but palliative treatment “to permit Charlie to die with dignity”.
In his judgment, Mr Justice Francis said: “It is with the heaviest of hearts but with complete conviction for Charlie’s best interests that I find it is in Charlie’s best interests that I accede to these applications and rule that GOSH may lawfully withdraw all treatment save for palliative care to permit Charlie to die with dignity.” The couple, from Bedfont, west London, had hoped to fly Charlie to the US for experimental treatment but the court found it was “very unlikely” the therapy would improve his condition.
Laura Hobey-Hamsher, the solicitor for Charlie’s parents, Chris Gard and Connie Yates, told BBC Radio 4’s Today programme her clients would be considering over the next three weeks whether their position had changed in light of what they had heard. Laura Hobey-Hamsher, the solicitor for Charlie’s parents, Chris Gard and Connie Yates, told BBC Radio 4’s Today programme that the couple were considering their next step “and their options will include the possibility of bringing an appeal to yesterday’s decision”.
The couple had hoped to fly Charlie to the US for a treatment trial, described by some as pioneering. However, Francis said no one with Charlie’s condition had ever been treated with the therapy proposed. The US doctor later acknowledged, after seeing documents about the severity of the condition, that it was “very unlikely” that Charlie would improve with that treatment. She said: “It’s going carefully through the reasoning behind the judge’s decision. It’s thinking carefully about whether, in light of what they have heard, their position has changed and whether they continue to believe having access to this treatment is in Charlie’s best interests.”
But Hobey-Hamsher said challenging the court’s decision would be on a list of options to consider. She said: “The order that was made yesterday – with the agreement of the hospital – was the artificial ventilation will not be withdrawn while the parents are considering their options and their options will include the possibility of bringing an appeal to yesterday’s decision.” Meanwhile, both Labour and the Liberal Democrats have expressed concern over access to legal aid after Francis said in court that he found it “remarkable” that the parents had not received any public funding in the case.
Asked what they would be considering, Hobey-Hamsher said: “It’s going carefully through the reasoning behind the judge’s decision. It’s thinking carefully about whether in light of what they have heard their position has changed and whether they continue to believe having access to this treatment is in Charlie’s best interests.” “Why weren’t the family given legal aid in this case?” the judge said. “As I understand it, neither of them is working because they’ve dedicated the last eight months to their son. I can’t think of anything more profound than what the parents are facing here.”
Hobey-Hamsher said the parents had hoped the judge would have ruled in favour of their application. “From their point of view, it was an incredibly straightforward question. Their son had the chance of treatment that might make him better, why wouldn’t the judge give them this opportunity,” she said. The Lib Dems’ justice spokesman, Jonathan Marks, told the Guardian that cuts to legal aid eligibility “have denied access to justice to many and have been bad for the development of the law. There needs to be an urgent and comprehensive review of legal aid to make sure access to justice is not denied and cases are properly argued.
“There was a window that was open, a small window, but a window nonetheless. It wasn’t a 0% chance, it was a very small chance, but even a very small chance is still a chance.” “Regardless of how we view the outcome of this case, Charlie’s parents and others in similar positions must have access to legal aid as a basic civil right.”
The shadow justice minister, Richard Burgon, said: “The Tories’ cuts to legal aid have denied justice to thousands. At the very least there need to be instances where the legal aid scheme recognises that the complexity or importance of a particular case demands ensuring state funding for the applicant.”
A spokeswoman for the Legal Aid Agency said: “Legal aid is rightly available for high court cases in relation to children and vulnerable adults. However, there was no application for legal aid in this case.”
Hobey-Hamsher told Today: “You don’t automatically get legal aid in any situation other than where there are care proceedings … You don’t get legal aid in life-and-death cases like this.”
Deep cuts to legal aid imposed by Chris Grayling when he was justice secretary have left a bitter residue of resentment within the legal profession and among civil rights organisations. The exceptional case funding scheme, which was supposed to provide a safety net for urgent cases of public importance, was so strictly interpreted initially that it failed to function, convincing many lawyers that spending many hours applying to Legal Aid Agency was wasted time.
An Amnesty International report on legal aid last year concluded that cuts to legal aid were far worse than anticipated and had created a “two-tier” system that denied the poorest people access to justice.
The government has promised a review of the Legal Aid, Sentencing and Punishment of Offenders Act, which came into force under the coalition government in 2013. The Liberal Democrats now say they recognise that the cuts it introduced “have had drastic and unintended consequences on access to justice”.
Labour’s Seema Malhotra, the couple’s local MP, said she would be writing to the justice secretary, Liz Truss, “to ask for clarity on entitlement to legal aid in such cases. This is particularly important in light of cuts to legal aid having had a deep impact on access to legal support for families across the country.”
She described the case as heartbreaking and said the judgment “will be devastating for the family. My heart goes out to Connie, Chris and the family as they consider their next steps.”
Charlie, who was born on 4 August, has mitochondrial depletion syndrome, a condition that causes progressive muscle weakness and brain damage. It is thought to affect just 16 children worldwide.Charlie, who was born on 4 August, has mitochondrial depletion syndrome, a condition that causes progressive muscle weakness and brain damage. It is thought to affect just 16 children worldwide.
His parents had raised £1,267,080 as at Wednesday morning to fund the treatment, through a GoFundMe webpage that was still receiving donations. His parents had raised more than £1.2m to fund treatment, through a GoFundMe webpage.
Francis stressed that funding was not an issue in the case. He said of the US therapy: “I dare say that medical science may benefit objectively from the experiment, but experimentation cannot be in Charlie’s best interests unless there is a prospect of benefit for him. The parents have indicated previously that if they lost the case they might set up a charity for research into mitochondrial depletion syndrome with the money donated.
“Charlie’s parents have sadly but bravely acknowledged and accepted that the quality of life that Charlie has at present is not worth sustaining, for he can only breathe through a ventilator, and although they believe that he has a sleep/wake cycle and can recognise them and react to them when they are close, they realise that he cannot go on as he is lying in bed, unable to move, fed through a tube, breathing through a machine.” A spokesperson for GoFundMe said the crowdfunding platform would speak privately to the family about what they wanted to do.
The parents had indicated previously that if they lost the case they might set up a charity for research into mitochondrial depletion syndrome with the money donated.
A spokesperson for GoFundMe said the crowd-funding platform would speak privately to the family about what they wanted to do.