On 13 March 2025, the Government announced that NHS England will be reintegrated into the Department of Health and Social Care (DHSC).
Genetic Alliance UK’s policy team has been working to understand the potential impact of these reforms on individuals and families affected by genetic, rare, and undiagnosed conditions. We would like to thank all the members of our community who have shared their views and concerns.
Three weeks after the Government’s initial announcement, our community is still awaiting further details. To address this, we have joined forces with the Specialised Healthcare Alliance (SHCA) and the Neurological Alliance to directly engage with key decision-makers.
Together, we have written to the Rt Hon. Wes Streeting MP and Sir James Mackey, Chief Executive Officer of the NHS Transformation Executive Team.
We are calling for a clear explanation of the next steps for specialised commissioning and the UK Rare Disease Framework. We have also called for a commitment to involve the genetic, rare, and undiagnosed community at all decision-making stages.
Read our open letter
What is happening to NHS England?
NHS England is responsible for leading the National Health Service in England. It has responsibility for commissioning highly specialised services, including those for rare and ultra-rare conditions. It also serves as a key delivery partner for the UK Rare Diseases Framework. The changes announced today mean that NHS England, which is currently an executive non-departmental public body, will return to direct oversight within the Department of Health and Social Care.
The Government has stated that this change is necessary to improve efficiency and allow healthcare professionals to focus more directly on patient care.
These changes affect England only.
Your voice matters
We encourage people within the genetic, rare and undiagnosed community to share their questions with us by email to [email protected].
