A 19-year-old woman who died after a legal battle with an NHS trust over her treatment for a rare mitochondrial disorder can be named, a judge has ruled.
Sudiksha Thirumalesh, an A-level student, and her family were embroiled in a dispute with an unnamed trust over whether she should be moved on to palliative care.
The court of protection heard Thirumalesh – who could “communicate reasonably well” with her doctors – wanted to travel to North America for a potential clinical trial described as “experimental”.
Judges were told she 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.”
However, the London court previously heard there was a “fundamental disagreement” between the family and the trust over the teenager’s care and what was in her best interests.
Lawyers for the trust said Thirumalesh, who was known as ST during the legal battle, was “actively dying” and experiencing severe respiratory episodes.
The student died on 12 September after a respiratory and cardiac arrest.
On Friday, her family and their lawyers returned to the court of protection to make a successful attempt to allow her and her family to be named publicly in relation to the case.
Bruno Quintavalle, representing her parents, Thirumalesh Chellamal Hemachandran and Revathi Malesh Thirumalesh, said “very far-reaching” restrictions had been put in place that meant “the parents are not even able to discuss privately with a friend the matters”.
“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 lawyer for the NHS trust, Victoria Butler-Cole KC, said there may have been a misunderstanding of the scope of the restrictions, which she said meant people were not allowed to identify the teenager 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”.
Speaking outside the Royal Courts of Justice in London after the hearing on Friday, the teenager’s brother, Varshan Chellamal Thirumalesh, said the family had been “gagged” and “intimidated”.
He 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. She is Sudiksha Thirumalesh not ST.
“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 for ever. We cannot imagine life without her.
“We seek justice for Sudiksha today, and for others in her situation.”
The court also heard the teenager’s family was planning to appeal against a previous ruling that 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 had a “complete inability to accept the medical reality of her position” and was not able to make her own decisions in relation to her medical treatment.
Butler-Cole KC said the trust had no objection to the late teenager or her parents being named.
A decision is yet to be made about whether the trust and clinicians who treated her can be named, with a ruling expected on Monday.
PA Media contributed to this report.
