A Christian family have spoken of their anger at the courts after finally being able to name their daughter who died after being denied the opportunity to pursue specialist treatment abroad.
Sudiksha Thirumalesh who died earlier this month, suffered from a rare genetic mitochondrial disease. She had been locked in a lengthy legal battle with the NHS for the last six months. The 19 year old, who was a committed Christian, was fully conscious and said she wanted to “die trying to live.” However a judgement in the weeks before her death said she didn’t have the capacity to make such decisions after NHS lawyers argued that she was “delusional” for disagreeing with the NHS’s view that her condition was hopeless. She was then put on an end of life pathway. Christian Concern says that the ruling had been made despite two psychiatrists proving evidence to the contrary.
A judge had also imposed reporting restrictions in the case, meaning it was impossible for the media to name Ms Thirumalesh, and her family was unable to campaign to raise money for treatment overseas.
But a ruling yesterday at the Family Division of the High Court said Sudiksha could now be named – although a decision on whether to lift restrictions on naming the hospital, the hospital trust or the clinicians involved has been adjourned until next week.
Following yesterday’s hearing, in a statement outside 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.”