Data/Research on people who didn’t get listed

[Robert1981]

hi,

Is anyone aware of any stats out there on this?

As a rough figure, around 12,000 liver related deaths per year, and around 900 transplants - roughly 7%, of transplanted divided by deaths

Going on what is available, c.40% of deaths are ages 65+, with arld deaths accounting for the most (rightly or wrongly I’m assuming most of these groups don’t reach assessment stage). Obviously will be some double counting here as well

Typically, 90% of people who get on the list successfully have a transplant, and so if you can make it on the list the odds are well in your favour

A 7% chance of transplant sounds really low, but I’m interested in what that figure more realistically is when you remove those that for whatever reason never get to or past assessment?

Apologies for the morbid nature of the post, but quite disheartening at face value for those who may need to go down that route at some stage

[RainbowLover]

Hi, I too would be very interested to know the stats for this.

[Breakfastbabe]

Hi Robert. I think your question is valid. Forgive me if I have misunderstood but have you factored age in? Some NHS trusts have an upper age limit for transplant, although I believe this is not UK wide, so over 65s will probably fall into that category. Unfortunately my husband was diagnosed one year too late for consideration. There are also certain other health conditions which may impact the decision making process such as circulatory problems, cancer etc. These may well be present where people have drunk and smoked heavily. I suppose supply and demand may also be an issue. We were told by our consultant that priority is given to younger patients and those who have non alcohol related liver disease as there is a very limited supply. Please keep us posted on your research.

[AyrshireK]

There are a lot of factors at play in why 12,000 people die from liver disease each year but not all get the opportunity to go forward for transplantation.

A massive factor is that a HUGE number will die having not even been aware they even had liver disease and subsequently were not under any hospital care OR in many cases their liver disease has presented at a very late stage whereby intervention probably comes too late.

* There is a seperate priority transplant list for people who do suffer acute liver failure and require transplant as a matter of absolute urgency and some people do get transplants in this event.

There are obviously strict criterion as to who can be put forward for transplant assessment and when & sadly some folks will become too ill even once placed on the transplant list although centre's do all they can to try and keep this group 'healthy enough' for t/p.

Like others have said there are several factors that are out and out contraindicators for transplant - advanced age being one, frailty, other health conditions that will impact on ability to undergo transplant or cause issues post transplant such as extra hepatic cancers (once on immune suppressants for organ rejection your body would have difficulty dealing with other cancers), cancer tumours within the liver that are too numerous or too big which could 'seed' during organ removal and then cause issues elsewhere in an immune suppressed body. Heart, lung and other circulatory issues that can make transplant survivability an issue.

Ongoing alcohol and drug use - the criterion was changed so that the minimum 6 months of sobriety before assessment was removed BUT a patient does have to be sober at time of referral for assessment and engaging in sobriety support etc.

Obviously there are limited resources as regards organ availability - a donor has to die in the correct circumstances - hospital, life support etc. Their organ has to be actually suitable - a great many people are walking around with liver disease that they don't know about - particularly fatty liver and if such a person is a potential donor it might only be on organ retrieval that they find organs are not suitable/usable.

Funding, bed space and available staff will also be a factor. Edinburgh for example has 20 liver transplant unit beds, 2 ITU beds, 5 HDU so they can only staff those areas and work with available theatre space which I suppose comes into play with the national organ allocation system where livers can be directed to named patients anywhere in the UK. A centre will only be able to use that liver if they have physical capacity to take it and use it and provide the needed bed space and staff.

I'd like to correct statements that priority goes to those with non-alcohol related disorders - this is NOT the case. The annual statistics for each transplant unit is detailed in NHS reports (The link is for period 2023/24). Page 25 of this document shows the data for causes of need for transplant with each UK transplant centre's numbers detailed on a graph. By far the leading cause of transplant in every one of the centres is Alcohol Related Liver Disease and patients who get them have proven that they are commited to sobriety and undergone rigorous assessment. nhsbtdbe.blob.core.windows....

There are loads of other statistics detailed in the above report on transplantation.

Katie

[Robert1981 in reply to AyrshireK]

Thank you - lots of interesting information, some of which I’m unsure as to why in the public domain when it comes to breaking down by location ‘performance’ for example

[2022minks]

Also some patients may choose not to have a transplant.