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.
Make a gift to support the family
‘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.”