Welsh Senedd votes in favour of Motion 8884 - Severe/Very Severe ME!
Members of Severe ME Difrifol Cymru have been working with Adam Price, MS, for the past year to prepare for the debate, which took place on Wednesday 10th December.
Embedded Files
You can watch the debate here: https://tinyurl.com/mux4pkcr
or read the transcript: https://tinyurl.com/4aumbvja
Context: The Welsh Government (WG) is sharing £8.3m pa amongst its 7 health boards for the development of the Adferiad (Recovery) services for people with ME, Long Covid and other chronic illnesses. WG expects these services to be co-produced at local level and comply with NICE guidance. But, in the absence of a national strategy, a post-code lottery of provision is developing, and there is a danger that those with the most severe needs will continue to receive the least care.
Adam said:
“There are thousands of people in Wales whom we almost never see … because to stay alive they must live in darkness; behind blackout blinds, away from noise, unable to bear light, sound or even touch. They are the people with severe and very severe ME, and they are at the heart of this debate..”
We’re grateful for Adam’s commitment in bringing to the attention of the Senedd the needs of people with severe and very severe ME.
Five Key asks of the Welsh Government:
Bring together a National Expert Working Group – comprising HCPs and patient/carer reps to
Co-produce an All-Wales Strategy / Delivery plan to ensure equity of service and compliance with NICE guidance across all ages and ALL severity levels;
Appoint an All-Wales Clinical Lead – to support complex cases, advise Adferiad teams, guide training, and keep Wales in step with emerging biomedical evidence – with a clear ambition, as expertise grows to develop this into a full All-Wales consultant post;
Develop an ME Research Strategy – make Wales one of 5 proposed UK hubs so that research into the biomedical causes of / potential treatments for ME and models of care is integral to the development of the Adferiad services and linked to research collaborations across the UK and the world;
A Safety and Equity Guarantee for people with Severe and Very Severe ME – responding to the Prevention of Future Deaths Report of Maeve Boothby O’Neill with clear guidance for hospital admission and nutritional support;
Adam concluded:
…” If our politics is to mean anything, if this place is to mean anything, it's surely that those with the least power, at times in their lives the least energy, sometimes the least ability to speak for themselves, that we recognise them and their needs, and their need for us to care for them collectively as a society..above all, I hope that (patient name) and all the other families, and all those following this debate from darkened rooms, look back on today, they will be able to say, ‘That was when Wales began to see us, to understand us and to act’.”
Severe ME Difrifol Cymru also thanks:
the many who contacted and shared their lived experience of this devastating illness with their MSs, and those MSs who spoke in the debate on their behalf;
Jeremy Miles for his positive response on behalf of the WG, and to all those committed health professionals within the Adferiad Teams who are trying to do their very best for people with ME – we want to work with you;
For the Senedd as a whole which voted to carry the motion through unopposed.
WAMES, MESiG, ME Voices Wales, AfME, MEA, 25% ME Group and Long COVID Support for backing us - and because ‘We are Stronger Together’!
You can contact us at: severeme.cymru@gmail.com
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