Sudiksha Thirumalesh, who suffered from a rare disorder, was involved in a legal battle with the NHS trust against being placed in end-of-life palliative care.
By EasternEyeAug 02, 2024
A 19-year-old, who died from a rare disease, has won a posthumous appeal against the National Health Service (NHS) trust to travel abroad for an experimental treatement in hopes of extending her life.
Sudiksha Thirumalesh, an Asian-origin teenager who suffered from a rare mitochondrial disorder, was involved in a legal battle with the NHS trust against being placed in end-of-life palliative care. She died following a cardiac arrest last year.
Sudiksha's family continued the legal fight on her behalf, arguing for patients' rights to decide their treatment course. A Court of Appeal judgment on Wednesday could impact future cases involving patients in similar situations.
Court documents revealed that Sudiksha was determined to explore clinical trials in North America or Canada. However, there were disagreements between her family and the medical experts over what was in her best interests.
The Court of Appeal ruled that Sudiksha had the mental ability to express her treatment wishes.
"The decisions in this case related to Sudiksha, who, notwithstanding her terrible illness, was studying for A levels before contracting COVID, which led to her long-term admission to ICU," stated the appeal judgment, presided over by Justice Eleanor King, Lord Justice Rabinder Singh, and Lord Justice Jonathan Baker.
"She was a 19-year-old young woman who was fully conscious, was not suffering from any mental illness or brain damage, and was communicating freely with both her family and the medical team caring for her. Whilst distressed on occasion, it was in the context of specific treatment. She was clear at all times in expressing her wishes, namely that she wanted to be provided with all active care possible, to try experimental treatment, and to 'die trying to live,'" the judgment read.
The court noted that all who interacted with Sudiksha agreed that she was a "remarkable" young woman who was "hardworking, determined, and resilient."
"The declaration of incapacity having been set aside, the presumption of capacity applied. It follows that, in my judgment, this remarkable young woman had the capacity to make decisions in relation to her medical treatment and therefore had her wish to 'die trying to live,'" Lady King noted as she granted the family's appeal.
AN ASIAN writer has explained how his new book makes Britain’s imperial past “accessible, engaging and thought-provoking” for a younger audience.
Award-winning author and journalist Sathnam Sanghera’s new book, Journeys of Empire, explores empire through 10 journeys he described as being “extraordinary”. Sanghera said his book, published last month by Puffin UK, is “a way of helping children understand how Britain’s biggest story still shapes the world today.”
“We’re not taught this history very well,” he told Eastern Eye.
“The empire is morally complex – sometimes we were good, sometimes bad – so, how do you even begin talking about it? It’s also contentious. There are millions of us whose families were colonised, and millions whose families were the colonisers.”
Teachers cannot teach what they themselves were never taught, Sanghera pointed out.
“There are multiple layers to why British people are so bad at talking about this history. It touches on race, misogyny and geopolitics. It’s easier just not to talk about it.”
And , the cover of his book
Following the success of his bestselling children’s title Stolen History, Sanghera’s this latest work continues Sanghera’s mission to write for readers aged nine and above. With a focus on human experiences, Sanghera said he wanted show that history is not just a list of dates or conquests – it’s a tapestry of stories that connect people.
Born in Wolverhampton to Punjabi immigrant parents, he began school unable to speak English. Later he graduated with first-class honours in English language and literature from Christ’s College, Cambridge.
He has since built a career as a writer and journalist.
His memoir, The Boy with the Topknot, and his novel, Marriage Material, were both shortlisted for the Costa Book Awards. Empireland, Sanghera’s exploration of Britain’s colonial legacy, was longlisted for the Baillie Gifford Prize for Non- Fiction, named a Book of the Year at the 2022 National Book Awards, and inspired the Channel 4 documentary series Empire State of Mind.
His first children’s book, Stolen History, introduced young readers to the complex and often overlooked realities of empire. With Journeys of Empire, Sanghera aims to go further. “When I finally learned about the British empire, it changed how I saw myself, how I saw Britain, and how I saw India,” he said.
“It seemed obvious that you’d want to give this gift to young people – because your 40s is a bit late to be learning all this.”
Sanghera said the 10 journeys in the book take readers across continents and centuries, revealing both the ambition and the brutality of empire.
“The British empire covered a quarter of the world’s surface and a large portion of its population. It was seven times the size of the Roman empire,” he said.
Aiming to ensure diversity in both perspective and geography, Sanghera said he chose stories from various countries and different phases of the 400-year history.
Alongside India and Mahatma Gandhi, readers will learn about Guyana’s indentured labour system, Gertrude Bell’s adventures in Iraq, and the British invasion of Tibet led by Francis Younghusband.
“I wanted to highlight areas often left out of mainstream narratives,” the writer said. The stories are written with an accessible and honest tone, and with humour.
“Violence is a tricky area,” Sanghera said. “You can’t go into graphic detail, but you also shouldn’t whitewash it. The violence and racism of colonialism were intrinsic. “I tried to strike a balance - acknowledging the brutality without overwhelming young readers.”
Writing for children isn’t much different from writing for adults, Sanghera said.
“You still need engaging stories and to hold attention. The main thing is to avoid big words that might put them off.”
He pointed out how storytelling can counter the allure of digital screens.
“Kids are addicted to screens, and reading rates are falling globally. That’s disastrous for mental health, intellectual development, and politics,” he said.
“When you get news from screens, you’re in an echo chamber – you’re not being challenged or taught to think in a nuanced way.”
Sanghera’s hope is that stories of Journeys of Empire – from pirates to princes and explorers to rebels – will draw in young readers to a world of curiosity and reflection. He said, “The British empire is a complex story. Even the ‘good guys’ had flaws. That’s what makes it worth understanding.”
At the heart of his book is a message about complexity and contradiction. “The empire involved slavery and the abolition of slavery. It caused environmental destruction and inspired environmentalism. We live in a world that struggles with nuance, but that’s what makes us human,” Sanghera said.
“My hope is that readers – kids and adults – learn that opposite things can be true at the same time.”
After six years of writing about empire, Sanghera said he’s ready for a change. His next book will focus on the late pop star George Michael, due out in June next year.
“I thought George Michael would be a nice break from empire. But then I learned that his father came from Cyprus - which was under British rule. The reason he left Cyprus was because of the British. So, even George Michael’s story connects back to empire. You can’t escape it, wherever you go.”
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