Senedd Debate on Severe ME
WAMES is grateful to Adam Price MS and the other MSs who spoke and supported the Senedd Debate on severe ME on Wednedsay 10 December.
Adam Price MS began with 5 Asks:
- A Welsh ME and post-infection illness delivery plan within Adferiad, compliant with NICE
- National expert working group with clinicians and people with lived experience
- Appoint an all-Wales clinical lead for post-infection associated chronic illness, including ME and long COVID
- Wales should play a strategic role in research
- A safety and equity guarantee for people with severe and very severe ME.
Watch the debate Read the transcipt Read the Motion
Ten other MSs also shared constituents’ experiences and specific concerns:
Mark Isherwood – ME remains significantly under-recognised. Inconsistent data, under-diagnosis and the absence of comprehensive research into its societal and economic impacts mean that the full scale of the illness is still not well understood. It has long contributed to a lack of co-ordinated support and inadequate services for those affected.
John Griffiths MS raised the harmful assumptions about physical and mental capacity from healthcare professionals, who often fail to realise the fluctuating nature of the condition, the lack of COVID vaccination for people with ME and the need for the social model of disability to be applied as society and systems fail to accommodate ME needs.
Mabon ap Gwynfor MS – highlighted the stigma which belittles the conditionand the risk of inconsistent care and postcode lottery without a clear national strategy. He also referenced WAMES’ Vision for healthcare services.
Mike Hedges MS asked the government to ensure there were specialist services containing a range of healthcare professionals with training and experience in accessing, diagnosing, treating and managing ME/CFS, as outline in NICE.
Sioned Williams MS highlighted that Adferiad services are still not reaching many of those who need it the most and called for a dedicated expert group in Wales for ME.
Julie Morgan MS spoke about the unpaid carers who spend their lives supporting people who are suffering from ME, and the problems with access to benefits, access to medication, and lack of specialist medical knowledge. She highlighted the MIssing Millions and Cardiff based support group MESiG’s previous awareness raising.
Rhys ab Owen MS metioned how ME affects the whole family, expecially when children become ill, the danger parents face with child protection referrals, due to misunderstanding, and the feelings of being invisible. He also asked why the 2014 Task & Finish Group recommendations had not been implemented, as many of them were included in the Motion.
Luke Fletcher MS wants Wales to lead in research, because this is a massive blind spot in the fight against ME and it is massively underfunded. He called for no more warm words, as in the Task and Finish Group report, but action.
Jenny Rathbone MS believes the medical profession hasn’t caught up with how widespread ME is and that medical professionscan’t try to deny that people have got the issue, simply because they don’t understand it. There has to be continuity of care so that people haven’t got to repeat their story.
Delyth Jewell MS highlighted that the constituents who talked to her explained how they were going to suffer after their meetings – the price they have to pay for advocating for themselves. Others should be speaking not for them, but with them. They deserve better.
Other supporters of the bill were:
Altaf Hussain
Cefin Campbell
Heledd Fychan
Jane Dodds
Joel James
Llyr Gruffydd
Rhun ap Iorwerth
Sian Gwenllian
Health Secretary Jeremy Miles MS response included:
- Adferiad services meet the needs of people who use them and keep people with a milder or a moderate level of illness well or recovering.
- there is more to do to support people with post-infection associated illness, especially for those with the most serious symptoms and forms of illness, those with severe and very severe ME
- his officials are exploring UK research hubs and meeting Welsh researchers
- he is considering the calls for an all-Wales specialist, the establishment of an expert group, and the development of national standards and approaches in a range of ways
- review the implications for Wales of the future deaths report and explore what parts of the Royal Devon guidance might be useful in Wales
- We will continue to be guided by evidence, to listen to those with lived experience and to ensure that no-one living with ME or other post-infection associated illnesses is left behind
WAMES’ initial response:
WAMES thanks Adam Price MS and the other MSs who spoke and supported the Senedd Debate on severe ME on Wed 10 Dec. It was good to hear so many give a voice to people without one.
We welcome the Health Secretary’s recognition of the need to provide an equitable health service and a willingness to explore Wales’ involvement in ME/CFS research.
We believe he is over optimistic about the success of Adferiad services for people with ME so far, and the extent that they are guided by evidence and people’s lived experience.
However we look forward to finding out how WAMES can work more with the Welsh Government and NHS Cymru, so that “no-one living with ME or other post-infection associated illnesses is left behind”.
Thanks also to Rob Messenger for all his hard work in coordinating the patient voice and liaising with Adam Price MS
