A 19-year-old woman who died after a legal battle with an NHS trust over her treatment can now be named, a judge has ruled.
Sudiksha Thirumalesh, who had a rare mitochondrial disorder, was embroiled in a legal dispute with an unidentified NHS supervisor over whether she should be moved into palliative care.
The Court of Protection heard Ms Thirumalesh – who could “communicate quite well” with her doctors – wanted to travel to North America for a possible clinical trial, described as “experimental”.
Magistrates were told the A-level student was a “fighter” and had told a psychiatrist: “This is my wish. I want to die trying to live. We have to try everything.”
However, the London court previously heard there was a “fundamental disagreement” between the family and the trust about the teenager's care and what was in her best interests.
Lawyers for the trust said Ms Thirumalesh, who was known as ST during the legal battle, was “actively dying” and suffering from severe respiratory episodes.
“It's like drowning. He is able to sense what is happening,” Vikram Sachdeva KC told the court in July.
Ms Thirumalesh died earlier this month and on Friday her family and their lawyers returned to the Court of Protection to mount a successful bid to allow her and her family to be named publicly in connection with the case.
Mr Justice Peel told the court he wanted to “express my deepest condolences” to the family of the late teenager.
“I am so sorry for your loss in extremely difficult and trying circumstances,” she told her parents.
Bruno Quintavalle, representing Ms Thirumalesh's parents, Thirumalesh Chellamal Hemachandran and Revathi Malesh Thirumalesh, said “very extensive” restrictions had been put in place which meant “the parents cannot even discuss the matters privately with a friend”.
“There are very serious issues that have caused a lot of public concern,” he said. “Public concern is not helped by continued secrecy surrounding the proceedings.”
The lawyer later said Ms Thirumalesh had said “don't forget the transparency order” and wanted “everyone to know what's going on” while she had a “feeling of helplessness”.
“She's lying hopelessly in bed, she can barely speak, she can't move and people are making decisions for her – not respecting her wishes,” he added.
Speaking outside London's Crown Court after the hearing, the teenager's brother, Varshan Chellamal Thirumalesh, said the family had been “silenced” and “intimidated”.
She said: “After a year of struggle and heartache we can finally say our beautiful daughter and sister's name in public without fear: She is Sudiksha. It is Sudiksha Thirumalesh and not ST.
“Despite our grief and the continued shock of all we have been through, today a part of us is at peace.
“Sudiksha was a wonderful daughter and sister who we will love forever. We can't imagine life without it.
“We seek justice for Sudiksha today and for others in her situation.”
He added: “We are never out for revenge, we just want justice and to be able to tell our and Sudiksha's story.
“We want to thank the doctors who did their best for Sudiksha. To those few clinicians who seemed to only care about Sudiksha's death, we forgive you.'
The court also heard that the teenager's family plans to appeal an earlier ruling which said the teenager had a “profound inability to consider the reality of her prognosis”.
In the August ruling, Ms Justice Roberts found that the teenager had a “complete inability to accept the medical reality of her position” and was unable to make her own decisions in relation to her medical treatment.
Mr Quintavalle said her parents intended to appeal that finding.
Victoria Butler-Cole KC, for the NHS trust, said the body had “no objection” to the late teenager or her parents being named.
The lawyer said there may have been a “misunderstanding” of the scope of the restrictions, meaning people were not allowed to identify Ms Thirumalesh as the person “in relation to the proceedings”.
“It would be ridiculous to have an order that prohibited you from talking about a family member completely,” he said, adding that “it's unfortunate parents weren't told earlier.”
The judge asked if “there is nothing to stop, for example, the family from emailing, writing to friends, family, naming their daughter and saying the funeral is on such a date”.
“Of course not,” replied Mrs. Butler-Cole.
“It is very sad that the family has been prevented from speaking about their daughter outside of this process,” he added.
Mr Justice Peel ruled that Ms Thirumalesh and her family can be identified on Friday, but a decision has yet to be made on whether the NHS trust and the clinicians who treated her can be named.
A decision is expected on Monday.