Court Overturns Restrictions Banning Naming Woman Who Died After NHS Legal Battle

Sudiksha Thirumalesh, 19, who had a rare genetic disease but was fully conscious, wanted to be allowed to go to Canada for experimental treatment.
Court Overturns Restrictions Banning Naming Woman Who Died After NHS Legal Battle
Undated photo of Sudiksha Thirumalesh. (Courtesy of family and Christian Concern)
Owen Evans
9/22/2023
Updated:
9/25/2023
0:00

A Christian family has won the right to name their 19-year-old daughter following her death after she was blocked from pursuing specialist treatment abroad.

Publicly known only as “ST” for over a year due to a court order placed on the family, she can now be named as Sudiksha Thirumalesh, from Birmingham, following a ruling at the Family Division of the High Court on Friday.

The young woman told the Daily Mail in September that “By the time you read this, I could be dead. That’s according to my doctors who, for the last year, have repeatedly told me that I have had only days to live. But I am a fighter and will continue to fight.”

She was suffering from a rare genetic mitochondrial disease but was fully conscious and able to communicate. She died late on Tuesday evening (Sept. 12) from cardiac arrest.

For over six months, Ms. Thirumalesh had been locked in a long legal battle with the NHS to be permitted to go abroad to Canada to join an experimental clinical trial of nucleoside treatment.

Restrictions on Reporting

Her family is supported by the Christian Legal Centre.

The Christian Legal Centre said that on March 2023, the Court made a “Transparency Order” which placed restrictions on reporting any information that might lead to the identification of Sudiksha, members of her family, or the Hospital.

This prevented Ms. Sudishka and her parents from giving any direct media interviews until now or making an appeal for funds.

On Friday, Mr. Justice Peel adjourned the decision on whether to lift the restrictions on naming the hospital, the hospital trust, and the clinicians involved until next week.

A judgment from Mrs. Justice Roberts in the weeks before her death said that Ms. Thirumalesh did not have the capacity to make such decisions.

Mrs. Justice Roberts said: “In my judgment … Sudiksha is unable to make a decision for herself in relation to her future medical treatment, including the proposed move to palliative care, because she does not believe the information she has been given by her doctors.”

Ms. Sudishka’s disease caused chronic muscle weakness, loss of hearing, and damage to her kidneys, making her dependent on regular dialysis and other intensive care.

The hospital argued that while the prognosis was uncertain and she could have survived for some months, her condition was deteriorating, and she was therefore “actively dying.”

The NHS Trust had asked the Court to approve a “palliative care plan” for she which would mean she is no longer given dialysis and would die from kidney failure within a few days.

‘Brutally Silence and Intimidated’

Following the hearing, in a statement given outside of the court, the family 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.”

“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.

“We are deeply disturbed by how we have been treated by the hospital trust and the courts. We have been gagged, silenced and most importantly, prevented from accessing specialist treatment abroad for Sudiksha. Had she been allowed to seek nucleoside treatment six months ago it may well be that she would still be with us and recovering.

“Sudiksha said she wanted ‘to die trying to live.’ This is what she did. We are so proud of her.

“We did not look for this fight, this fight came to us from a ‘system’ that too readily gives up on life. We were brutally silenced, intimidated, and taken to court in the hour of our need.

“Sudiksha was called ‘delusional’ for saying she wanted to live. The ruling from Mrs. Justice Roberts was cruel, and no patient or family should be treated in this way.

“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.

“We are a Christian family who believe in life, love and forgiveness.”

Profoundly Disturbing Case

Andrea Williams, chief executive of the Christian Legal Centre, said that this “Christian family has shown courage in their most difficult hour facing the loss of their beloved Sudiksha. They stood firm in defending Sudiksha’s life.”

“This profoundly disturbing case has demonstrated the urgent need for an overhaul into how critical care decisions are made in the NHS and the Courts. There is an urgent need for a more open and transparent system. 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.

“This case should be a wake-up call for the government to set up an urgent public inquiry into the practices of the Court of Protection and the Family Division surrounding end-of-life cases after a series of disturbing and upsetting cases.”

An NHS spokesperson told The Epoch Times that “this would be for the trust to respond to” though “a decision is yet to be taken legally on whether the Trust can be identified.”

Owen Evans is a UK-based journalist covering a wide range of national stories, with a particular interest in civil liberties and free speech.
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