Rare Diseases: Health Services
The question
To ask the Secretary of State for Health and Social Care, what recent assessment his Department has made of the potential merits of ensuring that rare autoimmune rheumatic disease patients have named care coordinators.
Answered by Ashley Dalton
We are aware there remains unmet need on coordination of care for people with rare diseases and work is underway to improve this.
Integrated care boards (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, including for those with rare autoimmune rheumatic disease.
We are improving coordination of care for all rare diseases as a priority under the UK Rare Diseases Framework. England’s Rare Diseases Action Plans details a range of measures to improve coordination of care, including work against Action 37 on co-ordination of care for multi-system disorders. NHS England is also committed to include the definition of coordination of care in all new and revised services specifications for patients with rare diseases. 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.
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