NLOS: Our Response to the Review
PSC Support welcomes The Review and strongly agrees that changes to the National Liver Offering Scheme (NLOS) are required in order to ensure equity, access and transparency for patients. We endorse those recommendations which seek to address the disadvantage that PSC patients face under the NLOS.
NLOS and PSC Patient Disadvantage
A liver transplant is the only lifesaving treatment for PSC patients. PSC is a leading cause of liver transplant in the UK. Yet PSC patients do not currently enjoy equity of access to this lifeline, with longer waiting times and a scoring system which does not adequately reflect their patient burden.
The median age of diagnosis for a PSC patient is in their third or fourth decade of life, typically when they may be building a family or developing a career. PSC patients have described their time spent on the waiting list as ‘years lost’, ‘in limbo’, and ‘just existing’. It is imperative that disadvantaged patient groups, like those with PSC, are identified prior to implementation of the Review’s recommendations and awarded appropriate exception points.
PSC patients commonly report longer waiting times than others on the wait list (“Most patients on the wait list receive a liver transplant within a few years (>70%)” [p.22]. The Review links this disadvantage to the NLOS weighting of age [p.15], and therefore PSC Support strongly supports the Review’s recommendation 3.1 that age should not be used within the revised scheme as an unadjusted variable.
The current system does not reflect the patient burden for PSC patients, and therefore we strongly support the Review’s recommendation 1.2 that a needs-based scoring calculation should include quality of life measures and additional clinical factors beyond UKELD [p.30]. A needs-based system must only be used when it is appropriately adjusted to include other factors in order to ensure equity and access.
The Review correctly recognises that ‘risk of death’ alone does not adequately capture need, and we support the recommended use of additional objective measures which could include quality of life [p.36] in these calculations. We agree that there is a lack of validated tools [p.36] to measure quality of life in this context. But the development and use of quality of life and symptom assessment tools is essential in order to enable a truer reflection of the symptom burden and quality of life experienced by PSC patients.
Planning and Implementation
We strongly support the creation of a more future-proof and flexible scoring system that can be adjusted to respond quickly to new indications and/or evidence to support prioritisation changes [recommendation 4]. It is unacceptable that recommendations made by the LAG/FTWGs remain unimplemented [p.17]. A re-design must be appropriately resourced (including fit-for-purpose IT systems) so that it can be truly agile and responsive to agreed changes. Efficient implementation of agreed adjustments is essential in order to save and improve lives and address equity of access.
Criticisms of the current NLOS have arisen because of its complexity and lack of full transparency [p.40]. We strongly support the Review’s recommendations for a simpler design that is grounded in transparent data and transparent prioritisation scoring calculations. It is essential that there is ongoing monitoring and oversight of the system led by the LAG.
We strongly support the creation of a tool that is available for stakeholders to calculate prioritisation scores [recommendation 4.2]. When access to your lifeline is based on a “score”, it is essential that this number is visible to, and understood, by patients. This would enable a clearer communication plan for patients and the public, and we consider it to be a prerequisite to the effective function of any appeal mechanism.
PSC is one of the leading indications for liver transplantation and our community must be represented in multi-stakeholder Working Groups tasked with planning and implementing the re-design.
We strongly agree that refinements to the scheme objectives [recommendation 2.2] is necessary for a system that is to be trusted and effective. We strongly support all recommendations relating to monitoring and the refinement of the scheme. Should signals emerge that the KPIs are not being met, then there must be an agile and transparent process for implementation of changes.
We strongly support the Review recommendation for a change in approach to integrate the variant indications and cancer indications into a single system [p.51] that seeks to maximise the number of named patient offers and adopt the use of standardised exception points to prioritise those with certain diagnoses. Critical to this is the introduction of an individual appeal mechanism and/or centre-based recipient selection.
PSC Support strongly supports the immediate introduction of an appeals process for prioritisation, as recommended in the Review [recommendation 1.5], which must be accessible to all. PSC patients, particularly those facing an extended wait, report huge anxiety and frustration over their inability to understand or query their priority, which adds to the considerable patient burden.
We support continuing expansion of the scheme to include cancer indications, in particular cholangiocarcinoma, and measures to ensure that these transplants take place within pre-specified timeframes. The scheme should support the collection of or linkage to data outside NHSBT to maximise efficient use of time and funds associated with developing new indications.
Centre-based vs National Distribution
The centre-based distribution of DCD livers in the current system has been a lifeline for some PSC patients, as it has offered clinicians some scope to address the disadvantage faced by these patients under the NLOS system and reduce PSC patient waiting times.
It is therefore essential to PSC patients that the DCD centre-based distribution is maintained until the revised system is implemented and proven to not unfairly disadvantage one group over another. The fact that previously agreed adjustments to NLOS have not been implemented in over 5 years is deeply concerning [p.17]. It is imperative that current and new patients added to the wait list are not adversely affected or disadvantaged as a result. These adjustments must be completed prior to, or in parallel with, the development of a re-designed system.
Statement issued by PSC Support 29th September 2025 in response to the NLOS Review - Report & Recommendations Draft v11.2