MS calls for improvement in care for people living with rare conditions
Speaking in yesterday’s meeting of the Welsh Parliament, Mr Isherwood called for a Statement from the Health Minister on “how the Welsh Government is ensuring Welsh Health Boards are held accountable for prioritising the implementation of the Rare Diseases Action Plan for Wales, as set out in Welsh Health Circular 2022/017”.
“Yesterday, 23rd October, was International XLH Awareness Day. X-linked hypophosphataemia, XLH, is a rare, lifelong metabolic bone disease that presents the person living with the condition with a multitude of challenges on a daily basis. I attended a round-table event hosted here by Mike Hedges, a few weeks ago, which highlighted that the care for adults with XLH needs to be improved, as it does for many people living with rare conditions.
“Key challenges raised included a lack of care co-ordination, a lack of understanding of the condition, as well as challenges in accessing specialist treatment and care. It is essential for this group of patients and families, and others affected by rare conditions, that the commitments in the Action Plan are properly prioritised and equally delivered right across Wales, and I call for a Statement accordingly.”
Responding, the Trefnydd, Lesley Griffiths MS, said she is “not aware of any guidance that would need updating with Health Boards”, but that she will ask the Health Minister “to have a look to see if that is, indeed, the case”.
Mr Isherwood added “Guidance to public bodies is one thing, but holding bodies to public account for delivery is quite another. This strange Welsh Government aversion to ensuring that Welsh Health Boards and other public bodies are held accountable is dodgy, dangerous and damaging.”