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There was a mini-debate about the lack of health services for people with ME/CFS in Wales on Wednesday, 25 April – prompted by a question to Health Minister, Lesley Griffiths, from Julie Morgan, Labour's Assembly Member for Cardiff North and a former Westminster MP.
Ms Morgan had had given advance notice of this question: “What plans does the Minister have to improve the treatment of ME (Myalgic Encephalomyelitis) in Wales?”
The minister replied: The management of chronic diseases is a high priority for the NHS in Wales. An NHS Wales status care pathway for ME has been developed and was published in March 2011. I expect health boards to plan and deliver ME services in line with the care pathway.
Julie Morgan: Thank you, Minister, for that response. We had a very successful meeting with ME sufferers and their carers here in the Senedd before Easter. What could you do to try to get rid of the widespread misunderstanding about ME, which is a condition with very complex symptoms that vary from individual to individual? Often, GPs do not have the knowledge to recognise it. What can you do to help that situation?
Lesley Griffiths: I agree that it is very frustrating for people trying to get a diagnosis. A very close friend of mine had the condition about 25 years ago and she went through a lot of frustration in trying to get a diagnosis. There is a lot of misunderstanding about whether it is a medical condition or a psychological condition. I agree, therefore, that more needs to be done to improve understanding of the condition, both publicly and within the health professions. We have already helped the postgraduate medical deanery with the funding of an e-learning package to help raise awareness among clinicians and to assist with the diagnosis. I have asked for an update from NHS Wales on the improvements that have been made to the services since we published the care pathways in March last year.
Nick Ramsay: Minister, it was, sadly, not that long ago that ME was not even officially recognised by doctors and local health boards, and that led to a lot of unnecessary suffering for people who had the condition, even though it was undiagnosed. I am pleased that you have made these changes. You expect — I think that that was the word you used — all health boards to take the condition more seriously, as they have not always done that in the past. What practical steps are you taking to ensure that they adhere to your guidelines and implement the much-needed pathway? Also, if progress is not quick enough, what action will you take to really get the focus on this issue that we would all want to see?
Lesley Griffiths: A great deal has been done — I mentioned in my original answer to Julie Morgan that we have helped the postgraduate medical deanery with an e-learning package so that health professionals become much more aware of the condition. I also mentioned the publication of the care pathways from March of last year, so, clearly, this will be monitored through our usual channels. My predecessor, Edwina Hart, set up the task and finish group that started the process. I think that we have got many things right, but we recognise that more needs to be done.
Jocelyn Davies: Minister, you may be aware that the UK parliamentary group on scientific research into ME noted systematic bias towards the treatment of ME as a psychological condition to the exclusion of biomedical research, which is partly down to the Department for Work and Pensions and insurance companies having a vested interest in not accepting this condition as a medical one. Would you therefore agree that establishing a clinic for the 10,000 or so victims of ME in Wales will provide an opportunity for treatment and research from the biomedical perspective? Are you aware of any plans that local health boards may have to come together to do that?
Lesley Griffiths: I am not aware of any plans to provide a designated clinic of the type that you refer to, but this may be something that local health boards could look at, following the update that I have asked my officials to get from the publication of the care pathways. Maybe we could follow that up.
Gwyn R. Price: Minister, I, too, attended the event for ME sufferers and carers hosted by Julie Morgan. Many who attended the meeting talked of a lack of available expertise in this condition, which is still so misunderstood. What can we in Wales do to ensure that more health professionals have expertise in this field?
Lesley Griffiths: We need to ensure that clinicians and health professionals are much more aware of the condition, and I have referred to the help that we have given to the postgraduate medical deanery to fund an e-learning package, as that will help to raise awareness among clinicians and assist with the diagnosis of ME. I would expect the service to be kept under constant review so that, if there is a need for further training and information for clinicians in this area, it will be provided.
I saw Julie Morgan, who is my AM, a few weeks ago about something else but also re the NHS and she remembered all the emails and letters I had sent her about lack of provision for ME sufferers in Wales. It’s good to see that she, and others, are still keeping the pressure on the health minister to do something. I think Lesley Griffiths is either the fourth or fifth health minister we have had in Wales since I have had ME (ten years.) What we REALLY need is a consultant to whom we can be referred to have the initial diagnosis, by GP, confirmed. When someone with a long-term health condition is not referred to a consultant many people, including those at the DWP and ATOS,assume that the condition is trivial.