NHS 10 Year Plan | Update

Over the next few weeks and months, we will continue to analyse the Plan’s details and seek clarity on its implementation. We’ll also keep our community informed through our newsletters and social media.

The NHS 10 Year Plan will be delivered over the next decade, with some initiatives not slated for implementation for a number of years. Our community needs action now. A renewed framework is vital to sustain the momentum of the current UK Rare Diseases Framework, to ensure the NHS is able to meet the needs of our community and is seen as a destination for investment in rare conditions research and treatment.

The new NHS 10-Year Health Plan for England: Will the 10 Year Health Plan deliver NHS services for genetic, rare and undiagnosed conditions that are the ‘fit for the future’?

The UK Government’s new ‘Fit for the Future: 10 Year Health Plan for England’ outlines a major restructuring of the NHS in England. To be truly ‘fit for the future’, the NHS must meet the needs of all who use it. This includes the 3.5 million people living with genetic, rare, and undiagnosed conditions in the UK.

People with rare conditions often face significant hurdles in accessing care. We welcome the Plan’s focus on personalised, patient-centred care and establishing national standards for high-quality healthcare. The Plan sets out some positive directions of travel:

• A focus on genomics: It is encouraging to see a strong commitment to genomics throughout the Plan. The Plan proposes that a new ‘genomics population health service’ will be incorporated into routine care, featuring a dedicated genomics education programme for healthcare professionals, a unified genomic record, commitments to pharmacogenomics and a universal newborn genomic testing programme. Read our statement on newborn genomic testing.

We welcome the ambition for faster diagnosis. However, faster diagnosis must be accompanied by a positive diagnosis experience. This requires allocating resources to clinical services to ensure comprehensive information and support are provided before, during, and after diagnosis. Involving our community in the implementation will be vital to delivering a genomics service that is trusted and advances equitable healthcare for all.

• Tools to improve the experience of care: The NHS App is central to the plan, with the ambition of providing individuals direct access to their health records, including integrated genomic data. This may support people to advocate for themselves and manage their care effectively. We welcome the commitment to tools which may improve care coordination, including those to support people to review care plans, manage appointments, and communicate with healthcare professionals. Digitising the ‘red book‘ is also welcomed if it helps families manage their children’s health information and access support.  The commitment to ensuring health information consistently follows the individual, reducing repeated medical histories and promoting joined-up care, is encouraging. We also welcome the commitment to ensuring 95% of people with complex needs having an agreed care plan by 2027.

• A more innovation friendly regulatory system: The plan indicates a commitment to creating a more innovation friendly NHS. The Innovator Passport system, which aims to streamline the adoption of new medical technologies within the NHS by removing the need for repeated assessments across different organisations is welcome, as is the commitment to improved alignment between NICE and the MHRA to fastrack medicines.

Involving our community in the implementation of the 10 Year Plan will be crucial.  There are some areas of the Plan that must be implemented with caution; otherwise, they risk widening the already significant healthcare inequities faced by individuals with genetic, rare and undiagnosed conditions. For example:

• The Plan’s emphasis on local care and the delivery of a ‘Neighbourhood Health Service’ overlooks that specialist care is vital for many people with genetic, rare and undiagnosed conditions. The Plan offers very limited references to the future of specialist care beyond recognising the value of improved local care in reducing pressure on tertiary services. There is an expectation that ‘the share of expenditure on hospital care will fall, with proportionally greater investment in out-of-hospital care’ but this cannot be at the expense of specialist care. Resources must be available to ensure existing specialist care for rare conditions can be expanded in line with need.

• The commitment to expanding the use of AI for diagnosis is encouraging, but we must proceed with caution. For rare conditions, over reliance on AI tools for diagnosis carries significant risks due to limited availability of high-quality data from small patient populations, making robust model training challenging.

• Clarity on the Plan’s intent to empower NICE to withdraw ‘poor value’ drug approvals is needed. This move must not unfairly impact high-cost rare disease medicines. We require details on how these decisions on cost-effectiveness will reflect the specific challenges of rare diseases, and how the rare community can be involved in informing decisions.

Our conclusion

An NHS that is fit for the future must be an NHS equipped to provide equitable care for people with genetic, rare and undiagnosed conditions. It is vital that  our community are involved in decisions about the implementation of the Plan. The best way to achieve this is through a renewed UK Rare Diseases Framework. A renewed Framework would provide a means to inform the implementation of the NHS 10 Year Plan for England, while also providing an opportunity to go significantly further than what the Plan currently outlines for genetic, rare and undiagnosed conditions.

It’s also necessary to recognise that the Plan will be delivered over the next decade, with some initiatives not slated for implementation for a number of years. Our community needs action now.  A renewed framework is vital to sustain the momentum of the current UK Rare Diseases Framework, to ensure the NHS is able to meet the needs of our community and is seen as a destination for investment in rare conditions research and treatment.

What’s next?

We will continue to analyse the Plan’s details and seek clarity on its implementation. We’ll also keep our community informed through our digital newsletters and social media.

We will continue our campaign for renewal of the UK Rare Diseases Framework.

How did Genetic Alliance UK influence the development of  ‘Fit for the Future: 10 Year Health Plan for England’?

Genetic Alliance UK , on behalf of and alongside our membership, have taken advantage of opportunities to feed into the plans development. Read more about our involvement in the development of the 10 Year Health Plan for England.

Questions or comments?

Feel free to email Genetic Alliance UK’s policy team if you have any questions or comments.