PARLIAMENTARY WRITTEN QUESTION
Rare Diseases: Health Services (11 October 2024)

To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the potential merits of the National Paroxysmal Nocturnal Haemoglobinuria Service for care coordination for people with rare diseases; and what steps his Department is taking to help such patients to access multi-disciplinary care.

Asked by:
Peter Dowd (Labour)

The UK Rare Diseases Framework sets out four priorities to improve the lives of people living with rare diseases, such as Paroxysmal Nocturnal Haemoglobinuria (PNH). This includes the priority of improving co-ordination of care.

NHS England commissions services for patients with PNH from two centres, the Leeds Teaching Hospitals NHS Trust and the King's College Hospital NHS Foundation Trust. These two services work collaboratively to provide specialist care and care coordination to patients with PNH in England. This involves specialist diagnosis, multidisciplinary team care, shared care with local hospitals, and access to specialist drugs. The centres also provide outreach clinics. The service is recognised as an exemplar and has reduced mortality and improved outcomes for patients.

Answered by:
Andrew Gwynne (Labour)
21 October 2024