“There are very serious issues that have raised a lot of public concern."
A teenager who died after a legal battle with an NHS trust over her treatment for a rare mitochondrial disorder can be named.
Sudiksha Thirumalesh, aged 19, and her family were embroiled in a dispute with an unnamed trust over whether she should be moved on to palliative care.
The A-Level student from Birmingham could “communicate reasonably well” with her doctors.
The court of protection heard Sudiksha 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.”
But 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 representing the trust said Sudiksha, who was known as ST during the legal battle, was “actively dying” and experiencing severe respiratory episodes.
Sudiksha died on September 12, 2023, after a respiratory and cardiac arrest.
On September 22, her family and their lawyers returned to the court of protection where they successfully allowed for Sudiksha and her family to be named publicly.
Bruno Quintavalle, representing 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”.
He said: “There are very serious issues that have raised a lot of public concern.
“Public concern isn’t helped by the continuation of secrecy around proceedings.”
Victoria Butler-Cole KC, representing the NHS trust, 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”.
She said: “It would be ridiculous to have an order that banned you speaking about a family member completely.”
Ms Butler-Cole added that it was “unfortunate the parents have not been made aware of that sooner”.
After the hearing, 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 forever. We cannot imagine life without her.”
“We seek justice for Sudiksha today, and for others in her situation.”
It was also heard that the teenager’s family was planning to appeal against a previous ruling that said Sudiksha had a “profound inability to contemplate the reality of her prognosis”.
In the ruling in August 2023, Mrs Justice Roberts found Sudiksha 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.
Ms 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 September 25.