Patient plea to Steve Barclay to “please save my life” for new liver
A cystic fibrosis patient is begging Health Secretary Steve Barclay to “please save my life” after waiting 14 times longer than average for a new liver.
Sarah Meredith, 30, joined the transplant list in 2021 with a failing liver, yet complex Transplant Benefit Score algorithms penalise young patients like her, with genetic-linked rare forms of liver disease.
Her family claim that they are often rooted to the bottom of the queue, while the NHS’s National Liver Offering Scheme’s TBS computer algorithms slot in newly listed patients above her.
They said the process uses “outdated” survival data from pre-2016, before any CF drugs existed and when many patients died as young adults. But now new CF wonder pills like Kaftrio are predicted to extend sufferers’ lives for decades.
The average wait for a new liver is 47 days, but Sarah has been waiting 650 days.
Sarah, from Cambridge, also has a string of other degenerative health problems. She was born with AATD, a rare genetic condition like CF which causes her additional lung and liver problems. Thirdly, she has developed portal hypertension – failure in her portal vein, the major vein that leads to the liver.
This means her ailing liver is slowly dying, yet it’s not recognised as a negative factor under the TBS algorithm. On top of that, it is now feared there’s an 80 percent chance a new lesion on her already frail liver is cancer.
However, her liver is too delicate to risk a biopsy and without scans proving “100 percent” that it is cancer, it still does not boost her TBS score and push her up the list.
Desperate Sarah has been left with no choice but to write an open plea in the Daily Express for Health Secretary Mr Barclay to step in, meet her and help save her life before it’s too late. She writes: “I feel my chance of life slipping away.”
After penning her moving letter, printed in full in today’s paper, brave Sarah told us: “This is my last chance. I want to live a full life.
“Other countries like Spain run successful transplantation services, preventing immense suffering and also saving money in patients’ long-term care.
“We need to ramp up investment in our transplant service while continuing to encourage more people to sign the Organ Donor Register and help save lives.
“A bigger investment in more intensive care beds and medical staff would also massively increase the number of organs made available in the UK for transplant.
“The transplant system is being stunted by a shortage of resources. An example of this is the lack of ICU beds, which has led to potential donations being wasted. This is basically sentencing someone on the list to death.” The Daily Express has campaigned for changes with our Cystic Fibrosis Crusade.
We first started fighting for Sarah in a successful 18-month campaign to secure Vertex Pharmaceuticals’ lifesaving CF drugs, including Kaftrio, for patients on the NHS.CF is a genetic condition affecting around 10,700 people in the UK whose lungs and organs are slowly destroyed by sticky mucus. But 90 percent can potentially thrive if given the Kaftrio pill.
Sarah recently moved from Devon to Cambridge, to be nearer to the city’s transplant clinic at Addenbrooke’s Hospital, just in case a free donor liver becomes suddenly available. The strain of fighting for her daughter’s life recently saw her mother Catherine Meredith, 68, suffer a heart attack.
Yet so determined is she to get Sarah a transplant that, while recovering in a hospital bed, Catherine continued tweeting for more kind-hearted Britons to sign the Organ Donor Register.
When we alerted the Department of Health to Sarah’s lifesaving plea, they responded: “Organ donation and transplantation rates have been rising but so is demand and, with waiting lists growing, it is crucial people consider what they can do to help.”
NHS Blood and Transplant said the National Liver Offering Scheme is regularly reviewed by monitoring teams to make sure sub-groups like CF patients or those with AATD are not being disadvantaged with their scoring.
Derek Manas, associate medical director at NHSBT, said of Sarah’s long wait: “All patients waiting for transplant face a great deal of uncertainty.”
To find out more and to register as a donor visit organdonation.nhs.uk or call 0300 123 23 23. Or use the NHS app to check, amend and update your decision.
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