A 19-year-old who died after a legal battle with an NHS Trust over her treatment has been named.
Sudiksha Thirumalesh had a rare mitochondrial disorder. She launched a legal case against an unnamed NHS Trust over whether she should be moved onto palliative care.
Her family returned to the Court of Protection on Friday in a successful bid to allow her to be named publicly in relation to the case.
The court previously heard Ms Thirumalesh wanted to travel to North America for a potential clinical trial, described as “experimental”.
Judges were told the A-level student was a “fighter” and that she had told a psychiatrist: “This is my wish. I want to die trying to live. We have to try everything.”
But the London court heard there was a “fundamental disagreement” between the family and the Trust over the teenager’s care and what was in her best interests.
‘It’s like drowning’
Lawyers for the Trust said Ms Thirumalesh, who was known as ST during the legal battle, was “actively dying” and was suffering severe respiratory episodes.
“It’s like drowning. She is able to sense what is happening,” Vikram Sachdeva KC told the court in July.
The patient died on 12 September after a respiratory and cardiac arrest.
Mr Justice Peel is expected to rule on Monday about whether the NHS Trust and clinicians who treated her can be named.
The teenager’s family is planning to bring an appeal against a previous ruling which said the teenager had a “profound inability to contemplate the reality of her prognosis”.
In the ruling in August, Mrs Justice Roberts found the teenager was not able to make her own decisions about her medical treatment.
‘We cannot imagine life without her’
Speaking outside of the Royal Courts of Justice in London after Friday’s hearing, the teenager’s brother, Varshan Chellamal Thirumalesh, said the family had been “gagged” and “intimidated”.
“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. She is Sudiksha Thirumalesh – not ST,” he said.
“Despite our grief and the continuing shock over everything we have been through, today a part of us is at peace.
“Sudiksha was a wonderful daughter and sister who we will cherish forever. We cannot imagine life without her.”
He added: “We seek justice for Sudiksha today, and for others in her situation.
“We have never been out for revenge, we just want justice and to be able to tell our and Sudiksha’s story,” he added.
“We want to thank the medical practitioners who did their best for Sudiksha. To those few clinicians who seemed only to care about Sudiksha dying, we forgive you.”
Row over court battle secrecy
Bruno Quintavalle, representing Ms Thirumalesh’s parents Thirumalesh Chellamal Hemachandran and Revathi Malesh Thirumalesh, said “very far-reaching” restrictions had been put in place that meant they were unable to discuss her case privately – even with friends.
“There are very serious issues that have raised a lot of public concern,” he said. “Public concern isn’t helped by the continuation of secrecy around proceedings.”
The barrister later said Ms Thirumalesh had wanted “everyone to know what is happening” while she had a “feeling of powerlessness”.
“She’s desperately lying in bed, unable barely to speak, unable to move and people are making decisions about her – not respecting her wishes,” he added.
Victoria Butler-Cole KC, for the NHS Trust, said the body had “no objection” to the late teenager or her parents being named.
The barrister said there may have been a “misunderstanding” of the scope of the restrictions, which she said meant people were not allowed to identify Ms Thirumalesh as the person “in connection with the proceedings”.
“It would be ridiculous to have an order that banned you speaking about a family member completely,” she said, adding that it was “unfortunate the parents have not been made aware of that sooner”.