10 Year Health Plan for the NHS: What does it mean for genetic, rare and undiagnosed conditions in England?
10 Year Health Plan for the NHS: What does it mean for genetic, rare and undiagnosed conditions in England?
The Government will soon unveil its 10 Year Health Plan for the NHS. This long-term strategy is expected to address the growing demands on the NHS and lay out a vision for a more sustainable and fair healthcare system across the UK. While the specific details are still unknown, the 10 Year Health Plan for the NHS is expected to focus on delivering care closer to people’s homes, delivering digital solutions, and placing a greater emphasis on preventing illness.
What will the 10 Year Health Plan for the NHS mean for people with genetic, rare and undiagnosed conditions in England?
Genetic Alliance UK hopes that the 10 Year Health Plan for the NHS will focus on improving efficiency and quality of care will result in people living with genetic, rare, and undiagnosed conditions having more positive experience of receiving NHS care. However, the complex and unique challenges of these conditions often require highly specialised and tailored approaches that a broad, overarching strategy cannot adequately address.
Our community faces significant disparities, including lengthy diagnostic journeys, a lack of specialist knowledge among healthcare professionals, fragmented care coordination, and unequal access to both general and specialist services. These challenges are often further compounded for women, ethnic minorities, people living in rural areas, and lower socioeconomically positioned groups. Without explicit recognition within the 10 Year Health Plan for the NHS, we fear these disparities will be made worse.
Genetic Alliance UK firmly believes that a dedicated rare conditions policy, building upon the existing UK Rare Diseases Framework, remains the most effective way to ensure the specific needs of our community are met.
What are Genetic Alliance UK calling for?
Genetic Alliance UK is urgently calling on the Government to take action to ensure more than 3.5 million living with genetic, rare and undiagnosed conditions in the UK are not left behind.
We want the Government to:
- Explicitly recognise the unique and complex challenges faced by individuals living with genetic, rare, and undiagnosed conditions in the 10 Year Health Plan for the NHS, acknowledging that the needs of this community cannot be met by this Plan alone.
- Urgently renew the UK Rare Diseases Framework.
Only through this two-pronged approach, which involves integrating acknowledgement of the challenges of delivering health services rare conditions within the overarching 10 Year Health Plan for the NHS, alongside a dedicated and robust rare conditions framework, can the unmet needs of our community be addressed.
How Has Genetic Alliance UK Informed the 10 Year Health Plan for the NHS?
Genetic Alliance UK has been actively working to ensure that voices of people with genetic, rare, and undiagnosed conditions are considered throughout the development of the 10 Year Health Plan for the NHS. Our efforts have included:
- An open letter, in collaboration with the Specialised Healthcare Alliance, to the Secretary of State for Health and Social Care calling for recognition of rare conditions within the 10 Year Health Plan for the NHS and renewal of the UK Rare Diseases Framework.
- Responding to the government’s ‘Priorities for Change’ consultation. Read our response.
- Encouraging our member organisations to submit their own response,ensuring a diverse range of perspectives from the rare community are heard.
- Participating in the DHSC Research, Life Science and Innovation working group
- Partnering with the Association of Medical Research Charities (AMRC) to deliver a “workshop in a box” event on research into rare conditions and the 10 Year Health Plan for the NHS, as part of AMRC’s wider work on research and the 10 Year Health Plan for the NHS. The report of the event is here.
- Attending the NHS 10 Year Health Plan for the NHS Partner’s Council meeting.
- Collaborating with the All Party Parliamentary Group for Rare, Genetic and Undiagnosed Conditions to raise questions in Parliament about the 10 Year Health Plan for the NHS and renewal of the UK Rare Diseases Framework.
We have also been closely monitoring and responding to related policy developments, such as the proposed reintegration of NHS England into the Department of Health and Social Care. Read more about how we have been highlighting potential impacts of these changes on rare conditions services.