Written question WQ85345
- Asked by
- Russell GeorgeConservative
- To be answered by
- Minister for Health and Social Services
- Tabled
- Due
- Answered
- Time to answer
- 13 days
Question
What is the process by which decisions will be made about which conditions will be the subject of pilots under the Rare Diseases Action Plan?
Answer
Answered by Minister for Health and Social Services
The Rare Disease Implementation Group (RDIG), following the publication of the UK rare disease framework in January 2021, has developed a rare disease implementation plan which is is expected to publish next week.
Within the plan there are a number of actions including the development of exemplar pathways and evaluating the pilot of the Syndrome Without A Name (SWAN) clinic. The SWAN clinic is open to paediatric or adult referrals across Wales and aims to improve the diagnostic journey, the coordination of care and access to specialist care, and increase rare disease awareness among healthcare professionals. There are no plans to pilot any further services at this time.
The aim of the plan is to improve the outcomes for all rare disease patients regardless of their condition. It is not possible to provide pathways or services for every rare condition in Wales and some people will need to access treatment at specialist centres in England.
The Welsh Health Specialised Services Committee (WHSSC) has a clear process in place for the evaluation and prioritisation of new specialised services, which is undertaken on an annual basis.
RDIG, in conjunction with WHSCC, health boards and other partner organisations, will be responsible for the prioritisation, delivery and oversight of the plan.