Welsh Government replies re ME/CFS and long COVID


WAMES wrote to the Health Minister, Eluned Morgan MS, on 7th June about ME and long COVID. She is the first Health Minister to fail to reply herself. Instead she delegated her response to a member of the Government and Corporate Business Team, but the response clarifies some issues:

The £5 million given to Health Boards is a one-off payment to help Health Boards recover from the pandemic

“The funding can also be utilised to support other population groups affected by the pandemic e.g. those with additional rehabilitation needs due to waiting for planned care. A steering group is overseeing the implementation of this funding and one of the key principles for this group is to assure there will not be a two tier system for those with long COVID and those with similar existing conditions.

The funding will likely be used by health boards to fund Allied Health Professionals, GP’s and primary and community staff, rehabilitation support workers and develop Primary and Community infrastructure. As we are learning more about long COVID all the time it will also fund high quality, evidence based training and digital resources for all health professionals to assist in diagnosing, investigating and treating long COVID and supporting people in their treatment and rehabilitation.”

ME/CFS services are the responsibility of Health Boards

“With the increased focus upon long COVID, we expect any additional training and resource will also help support those with other fatigue related conditions as an increased focus is placed upon them.”

NICE guidance for ME/CFS

“The Welsh Government has always planned to respond and react to any changes within this guidance. As we await the publication and enter our NHS recovery phase, the Welsh Government are looking to ensure a renewed focus on long term conditions is adopted, ranging from supported self-management to diagnosis and treatment. This renewed consideration will take into account a wide range of voices and research to ensure services provide the level of care required.”

Supporting future service development

“You may be interested to know our National Clinical Framework has been published and sets out how clinical services must develop and become a learning health and care system. https://gov.wales/written-statement-national-clinical-framework-and-quality-statements. An Implementation Plan for this framework is being developed over the summer, which will outline how this revised approach will be monitored and adopted. Additionally an NHS Executive is currently being devised to create resource that will support Government to provide the strong system leadership and strategic direction which a planned system requires.”

WAMES response

The Welsh Government has restated that their role is to support NHS Wales develop services. In an ideal world the NHS would have identified the need to provide services for people with ME and sought the Welsh Government’s help. All past attempts by the Welsh Government to persuade Health Boards to cater for ME as a neurological or biomedical condition have been unsuccessful, whether focussing on ME alone or attempting to ‘ride the coattails’ of pain services, long term conditions, and now long COVID.

WAMES will continue to work with the Welsh Government once the revised NICE guidance is published and we are renewing efforts to engage with doctors’ leaders and Health Boards.  We are continuing to search for the ‘winning argument’, the words and images that will finally breach their defences and persuade them we are their responsibility and should be ignored no longer.

Watch this space for ways you can help!

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