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Medscape
an hour ago
- Health
- Medscape
Doctor's Prizewinning Book Finds Meaning in Life and Death
Dr Rachel Clarke has one of the most unusual CVs in British medicine. Before retraining as a doctor at the age of 29, she worked as a television journalist and documentary maker, reporting from war zones including the Gulf and Congo. Since qualifying as a doctor in 2009, she has specialised in palliative care and become one of the UK's most acclaimed nonfiction authors. Dr Rachel Clarke Clarke's writing draws deeply on both her clinical and personal experiences. Her first book, Your Life in My Hands (2017), recounted life on the NHS front line as a junior doctor. In Dear Life , she explored her work in palliative care and the death of her GP father from cancer. Breathtaking , written during the pandemic, laid bare the grim realities inside COVID wards. Her latest, The Story of a Heart , tells the true story of a heart transplant from 9-year-old Keira, who died in a car crash, to 9-year-old Max, who received her heart. The account has won Clarke the 2025 Women's Prize for Non-Fiction, for what the judges described as 'a clear-sighted and vital exploration into the human experience behind organ donation.' Medscape UK asked Clarke about the process of writing The Story of a Heart : Clarke: Access was amazingly straightforward. Both Max and Keira's families were very keen to participate in something that might end up increasing awareness of donation and getting people having a conversation with their families about donation. I was really conscious of the fact I'd be asking them to relive what was obviously an incredibly traumatic time. And I would be entrusted with one of the most personal and poignant stories that anybody has the misfortune to go through in their lives — the death of their child. Rachel Clarke's book won the Women's Prize for Non-Fiction 2025 I approached them with the same moral standards as I try to apply in my work as a doctor. I explained they could absolutely trust me and if at any point they changed their minds — right up to publication — they could do so, and I'd throw it away. I couldn't write the book unless they felt I had done their story justice. One of the main reasons I wanted to write the book was that I could see the value of what could come out of it. You've written four bestsellers. Do you write to inform the public about medicine or to highlight NHS issues? I very strongly regard my writing as a natural extension of being a doctor. When you specialise in palliative medicine, as I do, you are incredibly conscious of the harm and the suffering that can stem from fear and taboos around dying and conversations that don't happen because people are afraid to have them. Writing about that is a way to benefit patients. All the books I've written have tried to shed light on aspects of medicine and being a doctor that are poorly understood or misrepresented. That includes death and dying, what it was like in the COVID wards, or what it's like to choose to donate your child's organs. In my first book, I also explored what it's really like to be a professional who has to balance all their feelings and emotions, and the desire to do good, with the essential requirements of objectivity and dispassionate detachment that we need to do our job as doctors. How do you manage your time as an author and a palliative care doctor? With some difficulty! I split my time — 50% as a clinical doctor and 50% as a writer — which means I always juggle the two. It's an incredibly privileged position to be in, to have two jobs that I love so much. Genuinely, I feel being a doctor helps my writing and being a writer helps my medicine. Fundamentally, the core of both professions is very similar: It's about caring about people, listening very attentively to their stories, and trying to communicate them to other people clearly. You were a TV journalist after university and didn't go to medical school until you were 29. Are you glad you didn't go straight into medicine? I think it's helped me incredibly. I'm not even sure I would have survived medical school if I'd gone aged 18, as I was a sheltered teenager who'd experienced nothing in life. However, with 10 years' experience in the big wide world under my belt, I just had more understanding of what human beings go through in their lives. Why did you specialise in palliative care? I'm naturally somebody who hates bullying in all its forms. I hate people being marginalised or silenced — and I think, historically to some extent, palliative care patients fit that description. I once heard a consultant tell a patient they had cancer, and in an aside to us juniors, said to 'put them in the palliative dustbin.' That disgusted me so much. I felt it was incredibly problematic that patients could be treated with such derision because they no longer warranted a surgery, and I wanted to do something about that. I love my work and think palliative medicine is the very opposite of depressing. I meet patients who so often are showing the best of human nature: They are courageous, dignified, and loving, and I feel privileged to do the job I do. With that in mind, where do you stand on the assisted dying debate? I've been relatively active in the public debate about this. If assisted dying is going to be legalised in the UK, which I think it almost certainly will be, I know there's a real danger that people are going to choose the path of assisted dying when actually they have been denied the path of proper, decent palliative care. I say that with a lot of experience. I'm afraid that as palliative care is so badly funded, we are going to enter a new world in which the NHS doesn't provide adequate palliative care for a patient, but will fund their death — which seems an absolutely dystopian direction the UK is about to travel in. What else concerns you about the NHS at the moment? The mismatch between the care that we are capable of providing patients versus the care they need is gaping. We have the 10-Year Plan and strategies to address that, but it's not clear to me how on earth that gap is going to be met in the absence of increased funding. We've heard an awful lot from Wes Streeting about his three main priorities: analogue to digital, treatment to prevention, hospital to community. Fine in theory, but it's just a sound bite unless it's backed with funding. It's an ambitious plan, but at the same time we are laying staff off — and that's madness. So, would you encourage young people to go into medicine as a career? I very sadly know of very few doctors who'd want their children to follow them into medicine, and I think that is tragic. I am endlessly lucky, and I love my job. These days, you are coming out £100,000 in debt through paying for your medical degree; you are earning a salary that is, in real terms, much lower than it used to be, and you have no job security. All of that is atrocious. It's also the case that valuing the expertise that a medical education provides you with is being really denigrated in the NHS at the moment. Doctors are being substituted, for example, by physician associates and other groups as well. Is it really the case that somebody who isn't a doctor at all can do the same job of diagnosis and management? I'd argue most definitely not, but that seems to be the direction of travel. What's next for you? Have you ever thought of going into politics? One-hundred percent not, as I like to say what I believe, and I like to be able to express myself with integrity and honesty and not tow a party line. I'm not constitutionally built like that. Clinically, I will carry on doing my palliative care, doing lots of teaching and training, and I hope to carry on writing as well. Medicine is such a fascinating form of human activity. In a hospital, all of human life is there, but it's even more concentrated and dramatic. Hospitals are more full of huge feelings and life-changing events than any other arena of human life. And so it's endlessly fascinating to explore them in print.
Yahoo
20-07-2025
- Health
- Yahoo
Living kidney donor 'will give our son a new life'
Amrit Paul was in the middle of his computer science exams when he was told by doctors he would need a kidney transplant. "It was a shock. I didn't really know how to handle it and, in all honesty, I went into a shell," he said. He was placed on the organ donation register almost five years ago, having been diagnosed with a chronic kidney disease aged four. Amrit undergoes nine hours of peritoneal dialysis each night, a method of blood purification used when kidneys fail. "People say I look fine, but under the hood there are a lot of problems," the 24-year-old said. Now he and his parents are appealing for a living kidney donor from the South Asian community to come forward. 'Debunk myths' "Feeling your body change as your organs start to decline is tough," added Amrit, who works remotely in software sales. "My family are my motivation, they've been so supportive." Amrit's mum Jatinder Paul is leading their campaign. Their poster reads: "Please, help us find an angel for Amrit." Their appeal comes as NHS Blood and Transplant reveals that a record number of people are waiting for a life-saving transplant in the UK. When Amrit's immediate family, who are Indian Punjabi, discovered they were unable to donate, they also became aware of the shortage of matching donors from global majority backgrounds. "As a parent, it's hard not being able to donate because of your own health issues," said Jatinder. "So you reach out to the wider community and ask if there's someone who can help give him his life back." Dr Rhys Evans, clinical lead for kidney transplantation at Royal Free London, where Amrit is receiving care, said ethnicity can play a significant role in how long a patient waits. "Unfortunately, for patients like Amrit who has blood group B, which is more common in South Asian and Black ethnic groups it often means a longer wait, because there are fewer donors from those communities," he said. As of 31 March 2025, more than 8,000 people were on the active transplant waiting list across the UK - the highest number ever recorded. Over 1,300 of those patients are based in London. In the capital, the number of deceased organ donors fell last year to 130, down from 154 the previous year. Fiona Loud, policy director at charity Kidney Care UK, said greater awareness and conversation within ethnic minority communities is vital. "Sadly, every day at least one person dies waiting for a transplant. This has to change," she said. "People from Black and South Asian communities are more likely to need a donor from the same background as them so that the organ is less likely to be rejected. "Talking about it and sharing your decision helps debunk myths and makes your wishes clear to loved ones." Funding for more black and Asian blood donors Lack of ethnic diversity among egg and sperm donors Couple donate stem cells in 'rare' double match Anthony Clarkson, director of organ and tissue donation and transplantation at NHS Blood and Transplant, is also urging people to register their wishes. "We are facing an incredibly concerning situation. More people than ever are waiting for transplants, but fewer donations are taking place," he said. "We need to act across all areas - modernising the Organ Donor Register, improving understanding of the law, and investing in technologies that preserve and treat organs." Despite the difficulties and uncertainty about whether a donor will come forward, the family say they remain hopeful. "We want to spread the word, bring awareness and find a match," said Jatinder. "He's focused on living a normal life, and that's what gives us the strength to keep going as a unit." Listen to the best of BBC Radio London on Sounds and follow BBC London on Facebook, X and Instagram. Send your story ideas to NHS: Become a living donor
Yahoo
20-07-2025
- Health
- Yahoo
Living kidney donor 'will give our son a new life'
Amrit Paul was in the middle of his computer science exams when he was told by doctors he would need a kidney transplant. "It was a shock. I didn't really know how to handle it and, in all honesty, I went into a shell," he said. He was placed on the organ donation register almost five years ago, having been diagnosed with a chronic kidney disease aged four. Amrit undergoes nine hours of peritoneal dialysis each night, a method of blood purification used when kidneys fail. "People say I look fine, but under the hood there are a lot of problems," the 24-year-old said. Now he and his parents are appealing for a living kidney donor from the South Asian community to come forward. 'Debunk myths' "Feeling your body change as your organs start to decline is tough," added Amrit, who works remotely in software sales. "My family are my motivation, they've been so supportive." Amrit's mum Jatinder Paul is leading their campaign. Their poster reads: "Please, help us find an angel for Amrit." Their appeal comes as NHS Blood and Transplant reveals that a record number of people are waiting for a life-saving transplant in the UK. When Amrit's immediate family, who are Indian Punjabi, discovered they were unable to donate, they also became aware of the shortage of matching donors from global majority backgrounds. "As a parent, it's hard not being able to donate because of your own health issues," said Jatinder. "So you reach out to the wider community and ask if there's someone who can help give him his life back." Dr Rhys Evans, clinical lead for kidney transplantation at Royal Free London, where Amrit is receiving care, said ethnicity can play a significant role in how long a patient waits. "Unfortunately, for patients like Amrit who has blood group B, which is more common in South Asian and Black ethnic groups it often means a longer wait, because there are fewer donors from those communities," he said. As of 31 March 2025, more than 8,000 people were on the active transplant waiting list across the UK - the highest number ever recorded. Over 1,300 of those patients are based in London. In the capital, the number of deceased organ donors fell last year to 130, down from 154 the previous year. Fiona Loud, policy director at charity Kidney Care UK, said greater awareness and conversation within ethnic minority communities is vital. "Sadly, every day at least one person dies waiting for a transplant. This has to change," she said. "People from Black and South Asian communities are more likely to need a donor from the same background as them so that the organ is less likely to be rejected. "Talking about it and sharing your decision helps debunk myths and makes your wishes clear to loved ones." Funding for more black and Asian blood donors Lack of ethnic diversity among egg and sperm donors Couple donate stem cells in 'rare' double match Anthony Clarkson, director of organ and tissue donation and transplantation at NHS Blood and Transplant, is also urging people to register their wishes. "We are facing an incredibly concerning situation. More people than ever are waiting for transplants, but fewer donations are taking place," he said. "We need to act across all areas - modernising the Organ Donor Register, improving understanding of the law, and investing in technologies that preserve and treat organs." Despite the difficulties and uncertainty about whether a donor will come forward, the family say they remain hopeful. "We want to spread the word, bring awareness and find a match," said Jatinder. "He's focused on living a normal life, and that's what gives us the strength to keep going as a unit." Listen to the best of BBC Radio London on Sounds and follow BBC London on Facebook, X and Instagram. Send your story ideas to NHS: Become a living donor
BBC News
20-07-2025
- Health
- BBC News
Mum seeks living kidney donor from the South Asian community
Amrit Paul was in the middle of his computer science exams when he was told by doctors he would need a kidney transplant."It was a shock. I didn't really know how to handle it and, in all honesty, I went into a shell," he was placed on the organ donation register almost five years ago, having been diagnosed with a chronic kidney disease aged undergoes nine hours of peritoneal dialysis each night, a method of blood purification used when kidneys fail. "People say I look fine, but under the hood there are a lot of problems," the 24-year-old he and his parents are appealing for a living kidney donor from the South Asian community to come forward. 'Debunk myths' "Feeling your body change as your organs start to decline is tough," added Amrit, who works remotely in software sales."My family are my motivation, they've been so supportive."Amrit's mum Jatinder Paul is leading their campaign. Their poster reads: "Please, help us find an angel for Amrit."Their appeal comes as NHS Blood and Transplant reveals that a record number of people are waiting for a life-saving transplant in the UK. When Amrit's immediate family, who are Indian Punjabi, discovered they were unable to donate, they also became aware of the shortage of matching donors from global majority backgrounds."As a parent, it's hard not being able to donate because of your own health issues," said Jatinder."So you reach out to the wider community and ask if there's someone who can help give him his life back." Dr Rhys Evans, clinical lead for kidney transplantation at Royal Free London, where Amrit is receiving care, said ethnicity can play a significant role in how long a patient waits."Unfortunately, for patients like Amrit who has blood group B, which is more common in South Asian and Black ethnic groups it often means a longer wait, because there are fewer donors from those communities," he of 31 March 2025, more than 8,000 people were on the active transplant waiting list across the UK - the highest number ever recorded. Over 1,300 of those patients are based in the capital, the number of deceased organ donors fell last year to 130, down from 154 the previous year. Fiona Loud, policy director at charity Kidney Care UK, said greater awareness and conversation within ethnic minority communities is vital."Sadly, every day at least one person dies waiting for a transplant. This has to change," she said."People from Black and South Asian communities are more likely to need a donor from the same background as them so that the organ is less likely to be rejected. "Talking about it and sharing your decision helps debunk myths and makes your wishes clear to loved ones." Anthony Clarkson, director of organ and tissue donation and transplantation at NHS Blood and Transplant, is also urging people to register their wishes."We are facing an incredibly concerning situation. More people than ever are waiting for transplants, but fewer donations are taking place," he said."We need to act across all areas - modernising the Organ Donor Register, improving understanding of the law, and investing in technologies that preserve and treat organs." Despite the difficulties and uncertainty about whether a donor will come forward, the family say they remain hopeful."We want to spread the word, bring awareness and find a match," said Jatinder. "He's focused on living a normal life, and that's what gives us the strength to keep going as a unit."
The Independent
16-07-2025
- Health
- The Independent
Researchers try new ways of preserving more hearts for transplants
Two university hospitals are pioneering new ways to expand lifesaving heart transplants for adults and babies — advances that could help recover would-be heart donations that too often go unused. The new research aims to overcome barriers for using organs from someone who dies when their heart stops. Called DCD, or donation after circulatory death, it involves a controversial recovery technique or the use of expensive machines. Surgeons at Duke and Vanderbilt universities reported Wednesday that they've separately devised simpler approaches to retrieve those hearts. In the New England Journal of Medicine, they described successfully transplanting hearts to a 3-month-old infant at Duke and three men at Vanderbilt. 'These DCD hearts work just as well as hearts from brain-dead donors,' said Vanderbilt lead author Dr. Aaron M. Williams. How hearts are saved for donation Most transplanted hearts come from donors who are brain dead. In those situations, the body is left on a ventilator that keeps the heart beating until the organs are removed. Circulatory death occurs when someone has a nonsurvivable brain injury but because all brain function hasn't ceased, the family decides to withdraw life support and the heart stops. That means organs can spend a while without oxygen before being recovered, a time lag usually doable for kidneys and other organs but that can raise questions about the quality of hearts. To counter damage and determine whether DCD organs are usable, surgeons can pump blood and oxygen to the deceased donor's abdominal and chest organs — after clamping off access to the brain. But it's ethically controversial to artificially restore circulation even temporarily and some hospitals prohibit that technique, called normothermic regional perfusion, or NRP. Another option is to 'reanimate' DCD organs in a machine that pumps blood and nutrients on the way to the transplant hospital. The machines are expensive and complex, and Duke's Dr. Joseph Turek said the devices can't be used for young children's small hearts — the age group with the most dire need. New ways of preserving hearts Turek's team found a middle ground: Remove the heart and attach some tubes of oxygen and blood to briefly assess its ability to function — not in a machine but on a sterile table in the operating room. They practiced with piglets. Then came the real test. At another hospital, life support was about to be withdrawn from a 1-month-old whose family wanted to donate — and who would be a good match for a 3-month-old Duke patient in desperate need of a new heart. The other hospital didn't allow the controversial NRP recovery technique but let Turek's team test the experimental alternative. It took just five minutes to tell 'the coronary arteries are filling well, it's pink, it's beating,' Turek said. The team promptly put the little heart on ice and raced it back to Duke. Vanderbilt's system is even simpler: Infuse the heart with a nutrient-rich, cold preservative solution before removing it from the donor's body, similar to how hearts from brain-dead donors are handled. That 'replenishes the nutrients that are depleted during the dying process and helps protect it for transport,' Williams explained, adding that Vanderbilt has performed about 25 such transplants so far. 'Our view is you don't necessarily need to reanimate the heart.' More donated hearts are needed There's a huge need for more transplantable hearts. Hundreds of thousands of adults suffer from advanced heart failure, yet many are never even offered a transplant because of the organ shortage. Every year about 700 children in the U.S. are added to the transplant list for a new heart and about 20% die waiting. Turek said infants are at particular risk. Last year, people whose lives ended via circulatory death made up 43% of the nation's deceased donors — but just 793 of the 4,572 heart transplants. That's why many specialists say finding ways to use more of those hearts is crucial. The new studies are small and early-stage but promising, said Brendan Parent of NYU Langone Health, who directs transplant ethics and policy research. ' Innovation to find ways to recover organs successfully after circulatory death are essential for reducing the organ shortage,' he said. If alternatives pan out, 'I absolutely think that cardiac programs will be thrilled, especially at hospitals that have rejected NRP.' ___ The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute's Department of Science Education and the Robert Wood Johnson Foundation. The AP is solely responsible for all content.
