Is NHS Wales implementing the NICE guideline?
WAMES has been asking Health Boards in Wales during 2022 how they are implementing the 2021 ME/CFS NICE guideline. Although progress is excruciatingly slow, there are signs that some are making changes.
Hywel Dda and Betsi Cadwaladr Health Boards
Both are planning how to launch a stakeholder engagement on their implementation plans in 2023.
Cardiff & Vale Health Board
CVUHB has been holding a long-term conditions co-production exercise during 2021 which WAMES and members of MESiG have been part of. The Health Board is now planning a Pathway Implementation group, with WAMES as a stakeholder during 2023.
Aneurin Bevan Health Board
ABUHB is yet to report back on their autumn plans for setting up a Pathway implementation group and how they intend to consult patients.
Cwm Taf Health Board
CTUHB say they have made staff aware of the guideline but have not yet reported any further developments.
Swansea Bay Health Board
SBUHB say they have updated their ME/CFS clinical pathway, have a training programme for GPs and include people with ME/CFS in rheumatology services. WAMES continues to try to get more details about this service and encourage some patient engagement.
Powys Health Board
PtHB say they have updated their ME/CFS pathway. They consult existing service users about their plans, not those who have been disillusioned by their past use of graded exercise and CBT approaches). WAMES is continuing to try to find out more about the improvements they have made and how patients can be heard.
Welsh Government
During 2021 WAMES has been informing the ME/CFS lead (also the neuro and Long COVID lead) about the issues. She has been very interested and concerned. Hopefully 2023 will be the year of action!
Can you help?
In order to represent people with ME/CFS we need to hear about your recent experiences with the NHS in your area.
- Is your GP aware of the revised NICE guideline?
- Have you asked for a formal diagnosis?
- Do staff appear to understand PEM – the post exertional symptom exacerbation response?
- Do they know where to refer you within the Health Board?
- Have you been offered any of the Long COVID support sessions?
Contact jan@wames.org.uk
