No Welsh strategy to support ME/CFS service development
Following a question in the Senedd and discussions with Welsh Government officials it is now clear that the Welsh Government have rejected WAMES’ request to develop an all-Wales strategy or Delivery Plan to guide service development for ME/CFS in Wales.
Instead, the focus is on supporting Health Boards to develop services as they feel appropriate, as part of their existing Adferiad Long COVID service.
WAMES is very disappointed that all the focus is on rehabilitation services and that it has not been recognised that Health Boards across Wales would benefit from an all-Wales vision and strategy.
WAMES believes that national support and training would reduce the need for each Health Board to ‘reinvent the wheel’ and ensure a common understanding of the nature of ME/CFS, in line with the NICE guideline.
A patient’s journey through the NHS spans diagnosis, education about the illness, self-management support and informed medical care. A national strategy and vision would not remove the ability for Health Boards to address regional issues and needs, but it would remove some of the delays caused by a ‘trial and error’ approach to service development.
WAMES will continue to work with Health Boards to provide the patient and carer perspectiven and be part of the co-production approach that the Welsh Government have called for.
On 16 April 2024 Mark Isherwood MS tabled a written question in the Senedd:
What action will the Welsh Government take in light of the responses to the myalgic encephalomyelitis/chronic fatigue syndrome interim delivery plan, specifically the request from patients for a national strategy to address past stigma and lack of training for professionals?
The Cabinet Secretary for Health and Social Care, Eluned Morgan MS, answered on 23rd April:
Improvements to services for people with ME/CFS in Wales are being driven via our Adferiad (Recovery) programme, which was initially set up to support people with Long Covid.
The My Full Reality interim delivery plan about myalgic encephalomyelitis/chronic fatigue (ME/CFS) was a UK Government initiative. Together with officials from the other devolved governments, we maintained a watching brief about the development of the plan.
Information about the UK Government consultation on the interim delivery plan was circulated in Wales to encourage and enable people, clinicians, and other interested stakeholders to contribute. We are keen to take any learning from the feedback provided but, to date, we have yet to receive the country-specific feedback from the consultation from the UK Government. We have received a response from the Welsh Association of ME & CFS (WAMES), which has been shared with Adferiad-funded service leads in each health boards.
In addition to the £10m initially invested to establish Adferiad-funded services in every health board, £8.3m of recurrent funding has been allocated from March 2023 onwards. I have set out my expectation for this to be used to widen access to people with other long-term conditions whose rehabilitation and recovery needs are similar to people with Long Covid, including people with ME/CFS, and to continue to develop and expand community-focused, multi-disciplinary rehabilitation services, supported by referral pathways into secondary care for those who need it.
All health boards are developing needs-led services that will target recovery and rehabilitation needs focusing on proactive care, self-management, and supported self-management with extensive input from a broad multidisciplinary team. Co-production is an essential factor in service development, and I expect health boards to engage with people with lived experience in this process.
WAMES is grateful to Mark Isherwood MS for all the support he has given over the years to people with ME in Wales.
