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 ensure that people with Huntington’s disease have a named health professional who can coordinate their care.

NHS England specialised commissioning does not centrally commission dedicated care co-ordinators for Huntington’s Disease within integrated care boards (ICBs). ICBs are responsible for working with their local communities to understand the needs of the local populations and make decisions about how best to commission services that meet those needs, including the treatment of Huntington’s Disease, in partnership with other local commissioners and organisations.

Steps are being taken to improve coordination of care for all rare diseases as a priority under the UK Rare Diseases Framework. England’s Rare Diseases Action Plans detail a range of measures to improve coordination of care. NHS England committed to include the definition of coordination of care in all new and revised services specifications for patients with rare diseases. All highly specialised centres are required to work collaboratively with other providers in the service and have shared care arrangements in place with local hospitals as required. The National Institute of Health and Care Research has commissioned research to provide the evidence needed to operationalise better co-ordination of care for rare diseases in the National Health Service.