A MUM fears time is running out to save her daughter’s life because a computer algorithm puts the young woman at a disadvantage, she says.

Cathy Meredith says the liver transplant algorithm prejudices the young, those with severe portal hypertension and small women – all of which apply to Cystic Fibrosis sufferer Sarah.

Health bosses have told the 29-year-od of Totnes there is little chance of approving the urgent liver transplant she so desperately needs, because her post-op chance of survival is not high enough – even though she has a willing donor.

And to make matters worse, Sarah was wrongly listed as a low priority transplant patient by the NHS Blood and Transplant (NHSBT) for the first six months of her inclusion on the transplant register.

Matters only came to light when Cathy discovered the error following a Freedom of Information request in January. By this time, Sarah’s health had seriously deteriorated.

Cathy said: “Because of what are described by clinicians as “serious omissions” in the factors considered by the algorithm, such as portal hypertension which is an increase in the pressure in the portal vein which carries blood from the digestive organs to the liver, Sarah’s priority on the list is unlikely to become high enough to trigger liver allocation in time, even though she is likely to die without one.

“NHS Blood and Transplant bosses admitted that no algorithm in the world suits every situation, and made it clear that the algorithm works for the majority. In the USA, which runs a very similar algorithm, there is an appeals system which runs alongside so that outliers of the algorithm system can be assessed by a team of medics.

“We don’t have this in the UK so there is no pathway by which those who don’t ‘fit’ the computer program can be considered.”

The pair, along with Sarah’s sister Jessica, attended a virtual meeting with health bosses following a letter to NHSBT against the ‘flawed’ algorithm which has left Sarah at the bottom of the transplant list.

But their plea fell on deaf ears.

Cathy said: “Sarah has been told by clinicians that those with severe portal hypertention become so debilitated by it, that by the time they are allocated a liver it is too late as they are almost dead.

“Many don’t make it that far – another 22-year-old Cystic Fibrosis sufferer died on the liver transplant list just recently.

“The algorithm also favours those over the age of 40, the average age at transplant being 56.

“It’s horrendous for Sarah, she is utterly distraught.

“Through tears in her consultant’s office she said "I don’t mind waiting with everyone else, I don’t want preferential treatment, I just want to be considered under a fair system."

Cathy continued: “Sarah has been waiting over a year for a transplant - six months of that in the wrong, low priority group.

“NHSBT’s liver allocating computer program runs on blood test results, but Sarah’s disease manifests as severe long term portal hypertension.

“She is not going to achieve the high blood test scores needed for the computer program to allocate a liver, until it is too late and she is too fragile to transplant.

“In fact many clinicians have been complaining about problems with the algorithm on Twitter.”

Cathy and Jess are continuing to fight for Sarah’s life, but say time is against them and they don’t know where to turn for help.

“We have managed to secure support from a number of specialist clinicians in our challenge to the extremely unfair NHSBT transplant priority list, but fear that change will not happen fast enough for Sarah,” said a worried Cathy.

“She needs a transplant now and is already considered high risk not to survive the operation.

“We don’t know which way to turn and are on a short time limit.

“We are willing to risk anything. Sarah is listed for all marginal graphs including Hepatitis B and C livers, and split deceased right lobes. We are desperate.”

Cathy urged readers to join the NHS Organ Donor Register at www.organdonation.nhs.uk/register-your-decision.