Judge lifts gagging order that prevented ‘toxic’ NHS trust being named

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 today, 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 an independent review 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 to protect people in similar situations in the future.

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.”