Sudiksha: Judge lifts gagging order that prevented ‘toxic’ NHS Trust being named
29 September 2023 Issued by: Christian ConcernToday (28 September) a judge has ruled that the gagging order preventing the naming of the NHS Trust responsible for the care of 19-year-old, Sudiksha Thirumalesh, can be lifted.
Handing down judgment from the Family Division of the High Court, Mr Justice Robert Peel ruled that University Hospitals Birmingham NHS Foundation Trust can now be named.
However, Mr Justice Peel stopped short of allowing the naming of the Hospital and the clinicians involved before the expiry of an 8-week ‘cooling’ period.
The naming of University Hospitals Birmingham NHS Foundation Trust coincides with a BBC investigation this week which found that the same Trust has a ‘toxic’ and ‘mafia-like’ working environment and is the lowest performing in the country.
Sudiksha fought for her life for over a year, but could only be known to the world as ‘ST’ following a gagging order in March until it was lifted last Friday (22 September). The order also prohibited identification of members of her family, the hospital, the NHS Trust, or any of its staff involved in her care.
As a result, she could not tell her story or fundraise for specialist treatment abroad to battle a rare genetic mitochondrial disease. She tragically died on 12 September, days after breaking to the world the story of her legal battle with NHS bosses.
Her heart-breaking written notes revealing that she had full capacity until the end have also been released by her family this week.
Campaigners have argued that the frequent use of court orders in end-of-life cases, which threaten families in the middle of tragedy with being criminalised if they break them, are being weaponised to silence criticism and accountability of hospitals and the NHS.
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.
Supported by the Christian Legal Centre, her family are now working with lawyers to challenge and overturn this ruling.
Unfairly gagged
Responding to today’s judgment, Sudiksha’s father, Thirumalesh Chellamal Hemachandran, said:
“We have been unfairly gagged by these reporting restrictions for over six months. If not for those restrictions, our daughter might well still be alive. We are very disappointed that, even now, the Court has decided to continue to gag us for another eight weeks to keep the identity of the Hospital and the clinicians secret. We cannot even name the people who, in our darkest hour, have made it worse for Sudiksha and the whole family by taking us to court and securing a gagging order against us.”
Andrea Williams, chief executive of the Christian Legal Centre, said: “Justice is done in the light. Open justice ensures the best outcomes for all.
“The public is rightly concerned to know the truth about Sudiksha’s disturbing case and death.
“The attempt to justify those restrictions by fears of harassment or violence against the clinicians does not hold water. There is no evidence of such a risk in cases of this kind – certainly not in this case.”
Sudiksha’s case
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.
