Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to consult people with restless legs syndrome in the development of (a) policy and (b) clinical treatment guidelines.

Involving the relevant patient advocacy organisations, including people with lived experience of restless legs syndrome, is central to developing our policies for the National Health Service, to improve patients’ experience of services.

The consultation on our 10-Year Health Plan received over 270,000 contributions, including responses from NHS staff and patients. The plan will set out a bold agenda to deliver on the three big shifts needed to move healthcare from hospital to the community, from analogue to digital, and from treatment to prevention.

The Department has also convened a new United Kingdom wide neuro forum, which brings together the devolved administrations, health services, and Neurological Alliances of all four UK nations. The forum will share learnings across the UK, and will discuss important neurology service transformation and workforce challenges, as well as best practice examples and potential solutions.

The National Institute for Health and Care Excellence has not developed any guidelines on the diagnosis and/or management of restless legs syndrome, but has commissioned a Clinical Knowledge Summary (CKS) on the diagnosis and clinical management of restless legs syndrome, updated in February 2025, which can be used as a source of information for healthcare professionals, and which is available at the following link:

https://cks.nice.org.uk/topics/restless-legs-syndrome/

CKS topics are written by an expert multidisciplinary team with experience of primary care, supported by a network of specialist external reviewers.