Written Question·Department of Health and Social Care·UIN 86628
Rare Diseases: Health Services
Tabled: 30 October 2025
Answered: 26 November 2025
Question
Jim Shannon
Democratic Unionist Party — Strangford
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.
Answer
Ashley DaltonWe 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 po...
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