Young people with liver disease being left in waiting list limbo

Younger people with liver disease are currently waiting months longer for transplants than patients aged over 60, a BBC investigation has found.

There is a national shortage of liver donors and changes since 2018 to the algorithm that decides who to prioritise have left younger people in longer-term limbo.

Before the new algorithm came in, 26- to 39-year-olds would expect to be on the waiting list for an average of 172 days, which was about 40 days longer than for patients over 60. Now the gap has widened to 156 days, or more than five months.

The reason for the discrepancy is that the algorithm, rightly, prioritises patients who are most likely to die soon, which in practice tends to be older people.

It does that by looking at 21 recipient parameters, such as age, disease type and severity, and seven donor ones. Then it gives a score. The higher the score, the more likely you are to get a liver soon.

However, the result in practice, as liver transplant surgeon Professor Nigel Heaton told the BBC, is that younger people, who tend to be born with liver disease or to have developed it early in life, can end up on waiting lists for years sometimes, with their health deteriorating.

“It’s not something they’ve done through drinking, drugs, or lifestyle. This is something that they haven’t asked for,” he said.

“They’re not going to die immediately, but you can see they’re deteriorating on the waiting lists. This jeopardises their chances of a successful transplant, and some will die without getting successful transplantation,” he added.

People with liver disease can face stigma that it is to do with lifestyle choices, such as drinking or being overweight. According to the British Liver Trust, almost three-quarters of people with a liver condition have experienced stigma, and almost a third feel this has stopped them receiving medical care.

The need to urinate frequently can make sedentary jobs more difficult. Liver disease can leave people feeling tired and weak all the time or lead to jaundice, or a yellowing of the skin and whites of the eyes. Other symptoms can include itchy skin or feeling or being sick, all of which can make maintaining a job harder.

Liver disease is the only major disease where death rates are rising, with death rates four times higher than they were in the 1970s.

In England in 2020, it was the second leading cause of working lives lost (between those aged 16 and 64), overtaking ischaemic heart disease and accidental poisoning, according to the Office for National Statistics.

There are about 700 people on the liver transplant waiting list in the UK, although that number of course fluctuates as new patients are added and some have their surgery.

Others do not receive a transplant in time, with 69 people dying last year before they could get a liver, the BBC also found.