We are working with NHS Blood and Transplant (NHSBT) to support their review of the National Liver Offering Scheme (NLOS), the system used to allocate and distribute livers from deceased donors to patients on the transplant waiting list.
Introduced in 2018, the scheme has been formally monitored by a group of liver doctors, with feedback gathered from both patients and healthcare professionals. While it has received positive responses, concerns have also been raised. This review will assess whether the scheme should continue in its current form or if changes are needed.
To ensure that patient voices are heard, we are seeking input from those who have undergone a liver transplant, individuals currently awaiting a transplant, and their families. As part of the review, we invite you to share your experiences and insights by completing the NLOS survey.
Before completing the survey, please take some time to read through the following questions and answers below and/or watch the NLOS Q & A video. This will help you better understand the context and provide informed responses.
Take the survey: https://forms.office.com/e/wuzNx2dHhC
How do people get a liver transplant in the UK?
To go on the liver transplant waiting list, a person must have a liver disease that will be helped by liver transplantation. They will have a set of tests and checks called a transplant assessment which makes sure that:
- A transplant is the best treatment for them
- They will be able to recover from the transplant
- They will be able to look after themselves after the transplant, for example taking all the necessary medicines and going to check-ups
- They are more likely to live at least 5 years with a transplant than without one
While they are waiting for a transplant, people have regular check-ups. This helps their doctor check how they are doing and keep them as well as possible.
Donated livers mainly come from people who have died in hospital. There are two types of deceased donor liver depending on how the person died.
- Donation after brain death (DBD) means the person had a brain injury which caused their death.
- Donation after circulatory death (DCD) means the person died after their heart stopped beating.
Livers from the first kind of donor (DBD), are offered for transplant across the UK. This accounts for about half of all donor livers. This is called the National Liver Offering Scheme (NLOS) and has been in place since 2018 (see question 2).
Livers from people who have died after their heart stopped beating (DCD) aren’t included in the UK-wide scheme. These livers are offered to people waiting for a liver at the closest liver transplant centre, and the doctors there decide who should get the liver.
A small number of people are a high priority for a transplant. They go on different lists so they can get a transplant more quickly. This includes children, people whose liver has suddenly failed, and people who need a multiorgan transplant.
It is also possible to have a liver transplant from a living donor, where a healthy person donates part of their liver to someone with liver disease. However, livers from living donors are not part of the National Liver Offering Scheme.
What is the National Liver Offering Scheme (NLOS)?
In 2018 NHS Blood and Transplant introduced the National Liver Offering Scheme (NLOS for short). It offers livers to named patients across all 7 UK liver transplant centres.
It is for adults who need a liver transplant due to:
- long term (chronic) liver disease
- a type of liver cancer called hepatocellular carcinoma
- other liver problems that still require a liver transplant but aren’t as high of a priority (known as ‘Variant Syndromes’)
How are donor livers matched with people?
There are not enough donor livers for everyone who needs a transplant, and we can’t plan when a donor liver will become available. Also, many people may match with the same liver. We therefore need a system in place to decide who gets donated organs.
The National Liver Offering Scheme uses a calculation called the Transplant Benefit Score. This is made up of a combination of information about the liver donor (such as their age, blood group and any medical conditions they may have) and about people on the waiting list (such as their most recent test results).
Because it looks at both the donor and the person getting the liver, the score is different each time. The liver is offered to the person from the whole UK waiting list with the highest score for that liver. If their doctors think that the liver is suitable, the person being offered the liver gets a call asking them to come into hospital. The liver is transported as quickly as possible to the transplant centre. Doctors check the donor liver is good enough and, if they are happy, the transplant can go ahead.
Why is the scheme being reviewed and how does the review work?
The NHS regularly reviews the how organs are offered and allocated to patients to ensure allocation schemes are fit for purpose and decide whether any changes are needed.
Since it was introduced, the National Liver Offering Scheme has been formally monitored by a group of liver doctors, and there has been feedback from patients and healthcare workers. As well as positive comments, there have been concerns raised about the current scheme. The aim of this review is to decide whether to continue the scheme as it is or to make changes.
The review will include the views of patients and the public, as well as doctors and nurses who work closely with liver transplant patients. A final report is expected by Summer 2025, and any recommendations will be presented to the Medical Director and Senior Management Team of NHS Blood and Transplant. This is a group of senior NHS staff who oversee transplants and make final decisions about how liver transplants work in the UK.
What is the review looking at?
We want to know how well you think the scheme works. We also have specific questions we would like your views on. The review is looking at the overall goals of the scheme, how the current scheme is working, and whether the goals are meeting patients’ needs.
When the National Liver Offering Scheme was created, the NHS wanted to make it as fair as possible. But different people have different ideas about what fair looks like. Especially when having a liver transplant makes such a big difference for patients and some people must wait a long time.
The NHS considered 3 different ways to best achieve a fair liver allocation scheme. Each way focussed on a different goal which are defined below. All the goals are important, but they can’t all have an equal say because they would each pick a different person.
These goals are:
- The need of the patient. This would mean the sickest people get a transplant first because they don’t have the time to wait for a liver. This goal aims to keep the number of people who die while waiting for a liver as low as possible. However, the sickest patients may not live as long after transplant as other patients who were more well at the time of the transplant.
- Use of the liver (utility): The people expected to live the longest after a transplant get a transplant first. Utility means usefulness, so this goal aims to get the most life from the donated liver. Patients who are less sick at the time of transplant are likely to have a longer life expectancy after transplantation.
- Benefit from the transplant: The people who would get the most extra days of life because of the transplant get a transplant first. This is a mix of the first two goals and aims to pick the patients first who are both likely to die without a transplant yet also have a good life expectancy after their transplant.
At the moment, the National Liver Offering Scheme is based on the third goal – benefit from transplant. The current scheme uses a computer algorithm to find the person on the waiting list who would get the most benefit from that particular liver. It works out people’s chances of being alive in 5 years with and without the transplant. The difference between these predictions is what is used to measure benefit.
The main challenge for all of these approaches is that it is difficult to accurately predict how long someone is likely to live with and without a transplant. We use past experience of what has happened to patients in similar situations to make a ‘best guess’, but that doesn't consider differences between people. In most cases, how long someone has been waiting for a transplant is not taken into account. This is because research shows it doesn’t help us meet any of the 3 goals of patient need, use of the liver, or benefit from transplant. However, it is used for patients who don’t have liver disease or liver cancer – those patients with variant syndrome (see question 2). For these people, the scheme looks at how long they have been waiting instead of working out differences in how long they are expected to live.
What are the reasons for and against each way of choosing?
It’s important to remember that everyone on the transplant waiting list needs a transplant. And that they are all expected to live for at least 5 years after their transplant.
This table explains what each way might look like.
| Goal | For | Against | |
| Need of the patient | The sickest people go first, so people are less likely to die while waiting for a transplant. Most national allocation schemes work like this, and it is easy to understand. Doctors can predict which patients are most likely to die without a transplant. | The sickest people on the list might not survive as long after transplant as others. When organs are in short supply, some people may not think that is the best use of a donated organ. | |
| Use of the liver (utility) | Makes the most use of the donor liver by matching it to someone who will live the longest after transplantation. | People who are expected to have a shorter time to live after transplant might have to wait longer for a liver. The sickest patients on the waiting list are less likely to be chosen. They will have a higher chance of dying whilst waiting for a new liver. It is difficult for doctors to predict how long someone will live after their transplant, therefore we don’t know for sure how effective this goal is in achieving its purpose. | |
| Benefit from the transplant | This aims to find a balance between the other two goals. It looks for the people who will live the longest after their transplant out of those who are very sick and need a transplant soon. | The sickest patients on the waiting list might not be chosen. So they will have a higher chance of dying whilst waiting. This is the hardest goal for doctors to measure how well it is meeting patients’ needs. |
I have heard that there is a small window when you must be ‘sick enough’ to get a transplant but not ‘too sick’. Some people get sicker while waiting and this means that they are then taken off the list. How does the National Liver Offering Scheme stop this happening?
While people are on the waiting list, their medical team keep them as healthy as possible. They have regular check-ups and tests. Their team help them be ready for surgery, for example they might need support with their diet, getting fitter, or help with their mental health.
However, a liver transplant is a major operation, and sadly some people become so unwell while they are waiting that they wouldn’t survive the surgery. In these cases, their doctors would discuss the options with the patient and their family to decide whether they need to come off the list.
