The Health Secretary has been urged to act by his Lib-Dem rival after failing to respond to an ill patient’s desperate lifesaving plea.
Two weeks ago Sarah Meredith, 30, published an open letter to Steve Barclay saying complex algorithms allocating transplant organs are preventing her getting a liver.
The average wait is 47 days but due to her age and rare debilitating conditions, including cystic fibrosis, Sarah has been waiting 650 days. It is thought she would soar up the list if she was in her 50s.
In the Daily Express, Sarah has urged Mr Barclay to meet her and help correct failures in the algorithm but no reply has been received. Now Lib Dem health spokesperson Daisy Cooper has written to him.
Ms Cooper told us: “When lives are at stake the minister must step in.
“Sarah deserves a response without any further delay. Steve Barclay must urgently convene cystic fibrosis sufferers and experts to review the latest data to make sure that no one is at risk of losing their life because the guidance may be out of date.”
Yesterday Sarah, of Cambridge, said: “I feel as though I’m being written off as collateral damage of the computer system which, according to specialists, is extremely unlikely to allocate me a donor liver. For nearly two years I have waited on the liver transplant list – a soul-destroying experience. I’m ‘alive’ but not living.”
The NHS’s National Liver Offering Scheme algorithm is thought to use survival data from pre-2016, before life-extending CF drugs. It treats Sarah as a waste.
She was also born with AATD, a rare genetic condition causing lung and liver problems. Sarah has portal hypertension, failure of the major vein to the liver.
This means her liver is slowly dying yet it is not a negative factor that would boost her NHS algorithm score. And there is an 80 per cent chance a new lesion on her weak liver is deadly cancer. She is too frail to risk a biopsy to prove it and possibly raise her score.
The Department of Health and Social Care said: “Organ donation and transplantation rates have been rising but so is demand.”
NHS Blood and Transplant said it often reviewed its liver scheme to ensure groups like CF patients are not disadvantaged.
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