Hosting and speaking at a Senedd event today, North Wales Assembly Member and Chair of the Cross Party Group on Neurological Conditions, Mark Isherwood AM, has emphasised the need for urgent action to improve support for sufferers of ME (Myalgic Encephalomyelitis).
At the MESiG (ME Support in Glamorgan) ‘Unrest in the Senedd’ event, held with WAMES (Working for ME in Wales), Mr Isherwood said that despite concerns being raised in South East Wales and North Wales four years ago that sufferers of ME (also referred to as Chronic Fatigue Syndrome) were not being supported by the medical profession, with their experiences of the condition being largely misunderstood, ME sufferers are still facing challenges in accessing appropriate care and services.
He said:
“In 2014, a Petition reached the Senedd, calling upon the National Assembly for Wales to urge the Welsh Government to ensure that a dedicated Consultant/Clinic and medical support team for Myalgic Encephalomyelitis (M.E.), Chronic Fatigue Syndrome & Fibromyalgia sufferers is set up in South East Wales.
“They highlighted serious concerns that sufferers of the condition were not being supported by the medical profession, with their experiences of the condition being largely misunderstood. Similar concerns were raised with me by constituents in North Wales.
“In 2015, the Welsh Government established a Ministerial Task and Finish Group for ME/CFS. The Group made a series of recommendations to improve both pathways for ME/CFS and knowledge in the healthcare workforce.
“Whilst this Group resulted in the development of Local Health Board Delivery Plans, ME sufferers still face challenges in accessing appropriate care and services.”
He added:
“The Welsh Association of ME and CFS Support (WAMES) have raised concern about the delivery of this plan so far, on the grounds that very little so far has changed.
“They are calling on the Cabinet Secretary for Health and Social Services to address as a matter of urgency, the following: Improving Access to a Timely Diagnosis; Ensuring GP’s fully understand the complex and varying symptoms of the condition; and Developing clinical expertise in Wales, with a standard training / awareness programme for use across Wales.”
Mr Isherwood also referred to the ME Trust 2018-2021 Strategy “Vision into Action” Paper, which states that; GPs identify ME/CFS as one of the 3 most challenging illnesses they deal with; On average people wait 3-4 years for a diagnosis in the NHS; Less than half the Clinical Commissioning Groups, Health Boards and Trusts contacted in a 2017 survey have commissioned a specialist service in their area, and some parts of the UK, such as Wales, have no specialist services.
Referring to a BBC Wales article today, he said: “The Welsh Government said: ‘Health Boards in Wales are responsible for the healthcare needs of their population’. However, the article also states that: ‘the situation for patients in Wales has been described as ‘scandalous’ by the ME Association’, and that Jan Russell, of Welsh Association of ME & CFS Support (WAMES), described the lack of diagnosis and help for patients as ‘a health and social care crisis, even a humanitarian crisis’.”
A screening of an excerpt from the award-winning film ‘Unrest’ to find out about ME-CFS was shown at the event. For further information visit www.unrest.film