Sudiksha Thirumalesh

In a case that has captured public attention, the story of 19-year-old Sudiksha Thirumalesh and her legal battle with an NHS Trust over her medical treatment has taken a significant turn. A judge has lifted the gagging order that had previously kept her identity hidden, revealing a story marked by controversy and fervent determination.

Sudiksha Thirumalesh, an A-level student who suffered from a rare mitochondrial disorder, had been at the center of a contentious dispute between her family and an unnamed NHS Trust. What made this case particularly contentious was the Trust’s active opposition to Sudiksha seeking medical treatment abroad. They took the family to court and implemented a gagging order that prevented the family from being able to publicly fundraise to pay for their daughter’s care abroad.

Throughout the legal proceedings, Sudiksha, known as ‘ST’ during the case, had expressed her strong desire to explore all possible options to extend her life. She adamantly stated, “This is my wish. I want to die trying to live. We have to try everything.” Despite her deteriorating health, she remained resolute in her determination to fight for her chance at life.

However, a fundamental disagreement persisted between her family and the NHS Trust regarding her care and what was in her best interests. Lawyers for the Trust argued that Sudiksha was in an advanced state of decline, experiencing severe respiratory episodes, and was, in their assessment, “actively dying.” They actively sought to restrict Sudiksha from seeking potentially life-saving treatment abroad.

Tragically, Sudiksha passed away on September 12th following a respiratory and cardiac arrest.

On Friday, her family and legal representatives successfully petitioned the court to lift the gagging order, allowing Sudiksha and her family to be publicly identified in connection with the case.

Bruno Quintavalle, representing Sudiksha’s parents, expressed concerns over the secrecy surrounding the proceedings, stating, “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, the lawyer for the NHS Trust, acknowledged a possible misunderstanding regarding the scope of the restrictions, clarifying that the order did not prevent the identification of Sudiksha and her family.

Outside the Royal Courts of Justice in London, Sudiksha’s brother, Varshan Chellamal Thirumalesh, shared the familie’s relief in being able to publicly reveal Sudiksha’s name. He emphasised their desire to see justice for her and others facing similar situations.

A statement published by the family stated: “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.

“It is shocking that a family in the middle of stress and tragedy had a threat of imprisonment hanging over their heads.”

The legal battle is not entirely concluded, as the family plans to appeal a previous ruling that questioned Sudiksha’s capacity to make decisions about her medical treatment. A decision on whether the NHS Trust and clinicians involved can also be named is expected on Monday.

Sudiksha’s story has shed light on the complexities surrounding end-of-life decisions and the need for transparency and open discourse in such cases. It has also raised questions about the role of the NHS Trust in actively preventing Sudiksha from pursuing medical treatment abroad, a matter that has generated significant controversy and scrutiny. A fundraiser has been initiated to support Sudiksha’s family during this challenging time.

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