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Written question asked by Alex Mayer (Labour) on Monday, 25 November 2024, in the House of Commons. It was due for an answer on Wednesday, 27 November 2024. It was answered by Andrew Gwynne (Labour) on Monday, 2 December 2024 on behalf of the Department of Health and Social Care.

Achalasia: Health Services

Question

To ask the Secretary of State for Health and Social Care, if his Department will make an assessment of the potential merits of amending the Rare Diseases Framework to include provisions for improving patient-centred care pathways for Achalasia.

Answer

The Government is committed to improving the lives of those living with rare diseases, such as achalasia. The UK Rare Diseases Framework sets out four priorities, collaboratively developed with the rare disease community, which include better coordination of care and improving access to specialist care, treatments, and drugs. We remain committed to delivering under the framework, and will publish an annual England action plan in 2025.

There are no plans to amend the UK Rare Disease Framework for this condition. The framework is a high-level document focused on improving the lives of all people living with rare conditions. Whilst there are approximately 7,000 rare conditions, many share common challenges, which the framework seeks to address.

Pathways for managing patients with achalasia are set out in the NHS England Specialised Commissioning Paediatric Medicine: Gastroenterology, Hepatology and Nutrition Service Specification. This specification is due to be updated in 2024/25.

Secondary information

Type
Written question
Reference
15949
Session
2024-26
Related items
Achalasia: Health Services
Tuesday, 3 March 2026
Written questions
House of Commons
Subjects
Health services Rare diseases Achalasia
Link
View this Written question on www.parliament.uk