She has a name now that it is ‘safe’ to name her. Nineteen year old Sudiksha Thirumalesh died last week, sacrificed on the sacred altar of the NHS. In a country which claims no longer to have the death sentence on its statute books, it seems that the state can still find other ways of killing people.
It is considered safe to name her now as her fight is over and veracity of the decisions taken by the NHS regarding her care can no longer be tested. She is dead and it would be pointless to maintain her anonymity, by means of the gagging order that was imposed by a court at the request of the NHS.
Sudishka fought not to die from the extremely rare mitochondrial depletion syndrome from which she suffered. She did not want to have her life support terminated and be moved to palliative care. Her parents supported her in this fight and wished to have an experimental nucleoside therapy tried which, if it had not cured her, may at least have extended her life.
But the NHS had other ideas. The nucleoside therapy is not available in the UK as it is being tested in Canada. Sudishka’s parents wanted the opportunity to raise the money (£1.5 million) to send her to Canada. However, being unable to name her and to tell her story, this was impossible. They are still restricted from naming the NHS Trust and the clinicians involved.
Nucleoside therapy remains controversial, but research has been conducted since 2018. The rarity of the condition from which Sudishka suffered means that the opportunity for large scale clinical trials is limited. Nevertheless, research published in international peer reviewed journals is ‘promising’ and has already been shown to improve quality of life. Whether it had any promise for Sudishka or would have improved her quality of life will never be known.
Due to the ongoing restrictions on naming and reporting we are still not clear precisely why the NHS refused, not only to allow Sudishka to travel to Canada for treatment but no longer to persevere with her life supporting care. Presumably her parents will continue to fight to have the perpetrators of their daughter’s death named and brought to justice or, at least, to have her death made the subject of an inquest. Until then, allow me to speculate.
The NHS was unable to treat Sudishka successfully and was damned if it was going to be shown up for the useless, overfunded and politically motivated organisation that it is. After all, what had they to lose if Sudishka’s parents had raised the money and taken her to Canada only to find that treatment failed? Nothing. But they had a great deal to lose if she had been taken there for treatment and had returned to the UK in good health. I am sure that the NHS clinicians would refer to clinical decisions taken in the face of the best available evidence, but it is almost impossible not to see political pressure behind the decisions regarding Sudishka’s care.
It would be entirely inappropriate to try to make political capital out of the tragic and untimely death of Sudishka. Nevertheless, it is worth comparing how the NHS has created the circumstances under which one of its patients was denied a therapy, presumably on the grounds that it remained experimental (the word used repeatedly by the BBC in reporting Sudishka’s death) with their fanatical keenness to roll out an experimental treatment on the whole population and damn the consequences.
Roger Watson is a retired academic nurse who lives in the UK.
He is currently engaged in a range of professional consultancies in the UK, Europe and China. He writes regularly for several outlets including The Daily Sceptic, The European Conservative, Country Squire Magazine and The New Conservative.
