A 19-year-old Christian woman has died after the UK’s National Health Service (NHS), a hospital trust and courts prevented her from seeking ‘experimental’ treatment in Canada.
Christian Concern reports that for over six months, Sudiksha Thirumalesh had been locked in a lengthy legal battle with the NHS to be permitted to go abroad for treatment which might have saved her life. She was suffering from a rare genetic mitochondrial disease, but was fully conscious and able to communicate throughout most of her illness.
Sudiksha, a committed Christian, had said she wanted to ‘die trying to live’ but the restrictions placed on her and her family by a Court of Protection order barred them from raising funds to travel to Canada to join a clinical trial of cutting-edge nucleoside treatment.
Christian Concern writes that a judgment in the weeks before her death disturbingly said that Sudiksha did not have capacity to make such decisions after NHS lawyers argued she was ‘delusional’ for disagreeing with the hospital’s view that her condition was hopeless and she had to be put on an end of life pathway. The ruling was made despite two psychiatrists providing evidence that the teenager was capable of making her own decisions.
Earlier the NHS asked the Court of Protection to stop Sudiksha from seeking treatment. It prohibited her family from raising funds for the treatment and even mentioning her name in public for more than a year, while the teen challenged the rulings in the courts. The hospital trust and doctors involved could also not be named. Her brother Varshan said: “We were gagged, silenced and prevented from accessing specialist treatment abroad.”
The teenager had been in intensive care since her health deteriorated after contracting COVID in August 2022. In February 2023, the hospital asked the Court of Protection to set aside a Lasting Powers of Attorney document that Sudiksha had issued, authorising her parents to make decisions on her behalf. The Court then approved a palliative care plan, leading to her death within a few days.
Her family said they were deeply disturbed over their treatment by the hospital trust and the courts. They said Sudiksha may have still been alive if she had been able to access the treatment after spending all their savings on legal fees to resist the NHS’s efforts to end her life. “We are deeply disturbed by how we have been treated by the hospital trust and the courts. Had she been allowed to seek nucleoside treatment six months ago, it may well be that she would still be with us and recovering,” the family said in a statement.
“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.”
“Sudiksha was called ‘delusional’ for saying she wanted to live. The ruling from Mrs. Justice Roberts was cruel, and no patient and family should be treated in this way. We have never been out for revenge, we just wanted 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. We are a Christian family who believe in life, love and forgiveness,” the family’s statement concluded.
Andrea Williams, chief executive of the Christian Legal Centre said, “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. 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.”
Photo: Christian Concern