‘Her name is Sudiksha’ – Family wins freedom to name their 19-year-old daughter after tragic death22 September 2023 Issued by: Christian Concern
A family has won the right to name their 19-year-old daughter, following her tragic death, after being denied the opportunity to pursue specialist treatment abroad due to ‘dehumanising’ reporting restrictions.
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 today (22 September).
Sudiksha’s parents, Mr Thirumalesh Chellamal Hemachandran and Mrs Revathi Malesh Thirumalesh, and her brother Varshan Chellamal Thirumalesh can now also be named and are free to tell the story of their ordeal.
However, 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.
The plight of Sudiksha has been front page news culminating last week with the tragedy that the courageous 19-year-old had died.
For over six months, Sudiksha had been locked in a lengthy legal battle with the NHS to be permitted to go abroad for experimental treatment which might have saved her life. Sudiksha was suffering from a rare genetic mitochondrial disease, but was fully conscious and able to communicate.
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.
A judgment from Mrs Justice Roberts in the weeks before her death disturbingly said that Sudiksha did not have capacity to make such decisions after the 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 to the contrary.
‘Our beautiful daughter and sister’s name’
The family gave up everything to resist the hospital’s demands to put Sudiksha on an end of life pathway.
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.
“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.
“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.
“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 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.
“We are a Christian family who believe in life, love and forgiveness.”
Andrea Williams, chief executive of the Christian Legal Centre, said:
“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.”
Sudiksha’s tragic case was reminiscent of Charlie Gard, Alfie Evans and Archie Battersbee, in that an NHS Hospital, had asked the Court of Protection to authorise removal of life-saving medical treatment from Sudiksha, effectively condemning her to death.
Unlike in most such cases, however, Sudiksha was conscious, able to speak, and had instructed her own lawyers to argue that she should be kept alive and be allowed to go to Canada for experimental treatment which would give her a chance of survival.
Sudiksha was suffering from a rare genetic mitochondrial disease which caused chronic muscle weakness, loss of hearing, and damage to her kidneys, making her dependent on regular dialysis and other intensive care. It did not, however, affect the functioning of her brain.
The Hospital argued that while Sudiksha’s 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 Sudiksha which would mean she is no longer given dialysis and would die from kidney failure within a few days.
Two psychiatric experts instructed by the Hospital examined Sudiksha and have told the Court that she was not suffering from any mental health illness and had the mental capacity to make decisions about her own medical treatment.
Sudiksha told psychiatrists she disagreed with the doctors and wanted them to continue to sustain her life. She wanted to be given a chance to participate in clinical trials of nucleoside therapy, which are due to resume in Canada later this year and would have given her a chance of survival. She said she realised that the experimental treatment might still fail to save her, but in that case, she said that she “wanted to die trying to live”.
However, the Hospital doctors argued that Sudiksha’s refusal to trust the judgment of her doctors and to accept her imminent death as inevitable amounted to a “delusion”.
In a judgment released on the 25 August, Mrs Justice Roberts ruled that the decisions about Sudiksha’s life and death should be taken by the Court of Protection based on an assessment of her best interests, and that Sudiksha lacks capacity to have a say in the matter via her own lawyers. Rejecting the opinion of both psychiatric experts, the judge concluded that Sudiksha was mentally uncapable of making decisions for herself because she does not believe what Hospital doctors say about her condition. She concluded: “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.” [para 93]
Sudiksha grew up in a tightly knit Christian family who have spent all their savings to pay lawyers to resist the legal proceedings brought by the NHS to end her life. Despite her illness, she attended a regular school, achieved good GCSE results and was studying for her A levels when her health deteriorated after catching Covid in August 2022. She has been in an Intensive Care Unit ever since.
In November 2022, Sudiksha issued Lasting Powers of Attorney to authorise her parents to make decisions on her behalf in the future if she was to lose mental capacity to do so in the future. In February 2023, the Hospital asked the Court of Protection to set aside the document on the grounds that she did not have mental capacity to sign it. The Hospital then made a further application to approve a palliative care plan, said to be in Sudiksha’s best interests but which would lead to her death within a few days.
Like the family of Charlie Gard, Sudiksha’s only hope of cure was the experimental treatment known as nucleotide therapy, which is only available abroad. Her family wanted to appeal to the public to raise funds to enable her to participate in a clinical trial which is expected to start in Canada later this year.
However, in March 2023, the Court made a “Transparency Order” which, opposite to its title, imposes draconian restrictions on reporting any information which might lead to identification of Sudiksha, members of her family, or the Hospital. This prevented Sudiksha and her parents from giving any direct media interviews until now or making any appeal for funds. The Transparency Order was made at the request of the NHS Trust without any reasons.
Notes to editors
Image of Sudiksha: https://mcusercontent.com/bed173cc9adfcad1e0e442a35/_compresseds/122f6950-e319-2346-de7e-ef8300d4b1f3.jpg
Fundraising: You can find out how you can support the family at this time here https://mailchi.mp/christianconcern/support-st-family
Judgment from August 2023: A NHS Trust v ST & Ors – Find case law (nationalarchives.gov.uk)