19-year-old who died after legal battle with NHS is named

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 involved in a court fight with an unnamed NHS trust over whether she should be moved onto palliative care.

The Court of Protection heard Ms 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 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.”

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 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.

Ms Thirumalesh died on September 12 following a respiratory and cardiac arrest, and, on Friday, her family and their lawyers returned to the Court of Protection to make a successful bid to allow her and her family to be named publicly in relation to the case.

Mr Justice Peel told the court that he wanted to “express my profound sympathies” to the late teenager’s family.

“I am very sorry for your loss in extremely difficult and trying circumstances,” he told her parents.

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 “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 barrister later said Ms Thirumalesh had said “don’t forget the transparency order”, and that she 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.

We have never been out for revenge, we just want justice and to be able to tell our and Sudiksha's story

Speaking outside of the Royal Courts of Justice in London 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.”

He added: “We have never been out for revenge, we just want justice and to be able to tell our and Sudiksha’s story.

“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.”

The court also heard the teenager’s family are planning to bring an appeal bid over 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 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.

Mr Quintavalle said her parents intended to appeal against this 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 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”.

The judge asked if there was “nothing to prevent, for example, the family emailing, writing to friends, family, naming their daughter and saying the funeral is on such and such a date”.

“Of course not,” Ms Butler-Cole replied.

“It’s very unfortunate that the family were prevented from talking about their daughter outside of these proceedings,” she added.

Mr Justice Peel ruled that Ms Thirumalesh and her family can be identified on Friday, but a decision is yet to be made about whether the NHS trust and clinicians who treated her can be named.

A ruling is expected on Monday.

Andrea Williams, chief executive of the Christian Legal Centre which supported the family, said the case showed there is an “urgent need for a more open and transparent system”, and called for a public inquiry.

She said: “This profoundly disturbing case has demonstrated the urgent need for an overhaul into how end-of-life decisions are made in the NHS and the courts. Justice is done in the light and not behind closed doors.

“We are concerned about how many other patients and families have been through similar ordeals, and have had to suffer in silence.”