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Teen’s Family Fights ‘Cruel’ Health System

by | Tue, Nov 7 2023

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The family of a Christian teenager who died while battling the UK’s National Health Service (NHS) to continue life-sustaining treatment, has called for a public inquiry into how the NHS handles end-of-life cases.

Sudiksha Thirumalesh suffered from a rare mitochondrial disorder and was dependent on a ventilator and dialysis. British doctors declared she was “actively dying” and ended life-saving treatment.

The British courts then enforced gag orders banning the teen from being publicly identified which her family claims prevented them from raising funds for experimental treatment in Canada. Her father, mother and brother argued that: “If the NHS doesn’t have the capacity or expertise to provide specialist treatment they should communicate that clearly to families right at the beginning and allow for crowd funding automatically. The transparency order placed on us was cruel and prevented us from getting the help we needed. Not allowing patients with mitochondrial disorders like Sudiksha the chance to live, dehumanises and discriminates against them,” the family members claimed.

“There needs to be a public inquiry as there appears to be more and more concerning cases happening. We were shocked to find that one ICU doctor could decide a patient’s fate, and there was no second opinion. Then in court, one judge backed that prognosis despite, for example, expert evidence that Sudiksha had full capacity to make her own decisions.”

Andrea Williams, chief executive of the Christian Legal Centre, which supported the family during its legal battle, called for greater transparency. “Sudiksha’s 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,” she said.

“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 upsetting cases.”