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Sudiksha Thirumalesh, who was 19 years old, had a rare mitochondrial disorder, which affected her hearing, sight, muscle strength and other organs.

Sudiksha was both ventilator and dialysis dependent and was cared for on the critical care unit from 4 August 2022 to 12 September 2023. Very sadly, Sudiksha died on 12 September 2023, surrounded by her family.

Sudiksha’s illness was incurable and progressive: there was no known treatment that would be effective. Although research is continuing to try to cure the disease, and Sudiksha’s parents had applied to send her to North America for experimental nucleoside treatment, at no point did any hospital agree to accept her. The Trust facilitated these applications by providing all relevant information requested by these centres, but none of them were ever confirmed.

Funding was also a real question, which was never resolved. It was also unclear whether Sudiksha was fit to make such a long journey.

The Court of Protection anonymised Sudiksha, her parents, and the clinicians, following the established law in cases of serious medical treatment, and made a Transparency Order. Sudiksha’s parents applied on 4 April 2023 to discharge the Transparency Order, but on 15 May 2023 agreed to adjourn it, and also agreed that unless her prognosis improved, CPR and other escalations of treatment would be inappropriate. Following the judgment of Mrs. Justice Roberts on capacity on 25 August 2023, that application was listed for hearing on 22 September 2023.

Mrs. Justice Roberts followed well-recognised principles under the Mental Capacity Act 2005 in finding that, in order to be able to use or weigh relevant information, one has to believe that the information is true. For Sudiksha to have capacity to determine what medical treatment she should receive, she had to believe that the medical opinion was that her health was precarious and she could only have days or weeks to live.

In fact, Sudiksha simply did not believe that her condition was that fragile. There was a dispute between hospital clinicians and the psychiatrists as to whether such a belief was caused by an impairment or disturbance in the functioning of the mind or brain, and Mrs. Justice Roberts preferred the clinicians’ view. That decision may be appealed.

Mr. Justice Peel has commented that overall, the multiple clinicians, nursing staff and others charged with caring for Sudiksha have done so with dedication, conscientiousness and sensitivity.

We offer our sincere and heartfelt condolences to Sudiksha’s family and loved ones, at this devasting and difficult time for them. Their devotion and dedication to Sudiksha was resolute throughout her stay in hospital. Sudiksha’s death was also deeply upsetting for the staff who had cared for her for such a long time. Our thoughts remain with Sudiksha’s family and loved ones.