Parents of two children who were in end-of-life cases have called on the UK’s highest court to allow them to name the doctors involved.
Six-year-old Zainab Abbasi and 12-month-old Isaiah Haastrup were at the centre of life-support treatment disputes before their deaths in 2019 and 2018 respectively.
Both families say they disagreed with decisions made by doctors at the time, but court orders have prevented them from naming the doctors in the childrens’ care indefinitely.
The parents gathered on Monday at the Supreme Court in London as five judges consider allowing the names to be made public.
Speaking outside court about the disputes, Zainab’s mother Aliya Abbassi said: “Day after day, it was like a battle with them. In any profession, you should be accountable for what you do.”
Mrs Abbasi said the death of her daughter, followed by a fight for transparency, has taken a toll on family life.
She said: “I get heart palpitations, five years on. It’s broken us… there is something grossly unnatural about losing your child.”
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Last year, Zainab and Isaiah’s parents won a Court of Appeal fight to have the clinicians named.
However, the NHS trusts involved, in Newcastle and London, are now challenging the decision at the Supreme Court.
Zainab was born with a rare genetic illness which the family did not know about until she was three years old.
In July 2019, the six-year-old’s health rapidly deteriorated and she was admitted to hospital, struggling to breathe and was placed on a life support machine.
The local NHS trust applied to the High Court for permission to take Zainab off the ventilator, but in mid-September, just three days before the hearing was due to start, she died.
Isaiah suffered brain damage during his birth and was left severely disabled. A judge gave doctors permission to provide only palliative care – against the wishes of his father Lanre Haastrup and mother Takesha Thomas.
Isaiah died aged one-year-old in March 2018 and hospital bosses later apologised, saying improvements had been made to maternity services.
Mr Haastrup said on Monday he hoped that after last year’s Court of Appeal ruling he would finally be able to share Isaiah story and process his death. But that has not been the case.
“You don’t grieve when you’re fighting. You grieve afterwards don’t you? I think I am going to start grieving after the Supreme Court judgment,” said Mr Haastrup.
‘My story is not complete’
He also said: “I want to tell my story, my story is not complete when the characters are not named.”
Mr Haastrup said he could understand “at that time” why the reporting restriction was made but said it was now “academic”.
“There’s no point of having it in place anymore,” he said, adding that his son was a “fighter”.
In a ruling last year, three Court of Appeal judges said the rights of the parents to “tell their story” outweighed the privacy rights of the clinicians and staff that remained “long after” the court orders were made.
But Gavin Millar KC, for Newcastle Upon Tyne Hospitals NHS Foundation Trust and King’s College Hospital NHS Foundation Trust, said the Court of Appeal’s decision “contains a number of clear and obvious missteps”.
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In a statement, the Newcastle Upon Tyne Hospitals NHS Foundation Trust, which was involved in Zainab’s case, said: “We understand this has been an incredibly difficult time for the family and we extend our condolences to them.
“Our first priority is always to act in the best interests of our patients, and the entire clinical team involved in Zainab’s care did their best to support her and her family.
“It’s important to emphasise that there have been no findings of fault against any member of staff involved. As an employer, we have a duty to protect the wellbeing and safety of our clinical teams who work tirelessly to support their patients.”
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Meanwhile, King’s College Hospital NHS Foundation Trust, which was involved in Isaiah’s case, said in a statement: “Our sympathies continue to be with Isaiah’s family, and we have previously apologised for the standard of care they received at King’s.
“However, we are also committed to looking after the wellbeing of our staff, and protecting their ability to deliver safe and effective care for patients.”