Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps he is taking to (a) help ensure that patients with Complex Regional Pain Syndrome have access to ongoing specialist care following diagnosis and (b) allocate funding for research into (i) Complex Regional Pain Syndrome and (ii) other persistent pain conditions.

The Government is committed to improving the lives of those living with rare diseases through the UK Rare Diseases Framework.

Much of the routine care that people with chronic pain, such as some people with Complex Regional Pain Syndrome (CRPS), receive will be provided by local primary, community and a secondary care service commissioned via local integrated care boards (ICBs). The commissioning of these services is a local matter. In some cases, patients may receive care at Specialist Pain Centres. Details on commissioning of those services are available at the following link: https://www.england.nhs.uk/publication/adult-highly-specialist-pain-management-services/.

The fourth priority of the Framework is improved access to specialist care, treatment and drugs. In February 2025, the England Rare Diseases Action Plan 2025 was published, including progress made under this priority:

- Meeting to discuss the effectiveness of early access pathways for rare disease therapies;

- Launching a review of the National Institute for Health and Care Excellence highly specialised technology programme for evaluating rare disease treatments; and

- Introducing two new actions on reforming clinical trial regulations; and developing an operational framework for individualised therapies in the National Health Service.

Pioneering research is an underpinning theme of the Framework. The Department for Health and Social Care funds and supports research into rare diseases such as CRPS through the National Institute for Health and Care Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health, including rare diseases. The usual practice of the NIHR and other research funders is not to ring-fence funds for expenditure on particular topics.

The 2025 England Rare Disease Action Plan includes information on research for rare diseases through significant investments to support rare disease research. This includes the Rare Disease Research UK Platform (RDR UK), a £14 million investment over 5 years from the Medical Research Council (MRC) and NIHR, announced in 2023, which is now established and positioned well within the rare disease research landscape. In December 2024, the MRC launched the first 2 MRC Centres of Research Excellence (CoRE), both studying gene therapies, and each worth up to £50 million over 14 years.