Prynhawn da a Croeso, Good Afternoon and Welcome –
and thank you to MESiG – ME Support in Glamorgan – and to their guest WAMES – Welsh Association of ME and CFS support – for inviting me to host and speak at this “Unrest in the Senedd” event.
Myalgic Encephalomyelitis (M.E.) – also referred to as Chronic Fatigue Syndrome, is a long-term (chronic), fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune systems.
M.E. affects an estimated 250,000 people in the UK, and around 17 million people worldwide. There are an estimated 13,000 people in Wales with the condition – 70% of those are women and 10% are children under the age of 16.
It involves a complex range of symptoms, including chronic and disabling fatigue, post exertional malaise, cognitive difficulties, sleep disturbance, recurrent infections and chronic pain.
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.
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
This summer Miriam Wood from MESiG – who is here today- sent me a copy of the ME Trust 2018-2021 Strategy “Vision into Action” Paper.
As Miriam stated to me “I thought that you would be interested in reading about the ME Trust and what they are planning in England as a suitable and solid support for people with ME. We have had a speaker at our support group and this is the kind of support we require in Wales”.
This Paper states that the ME Trust's Mission is “to provide multi-disciplinary care and support, shaped around the needs of each person with ME/CFS and their community of carers”.
It also 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
Many of you will have seen this morning’s BBC Wales coverage of Anne Kavanagh – and how she struggled to get out of bed for several years after her diagnosis of ME.
The article includes the following:
“Owen Hughes, who chairs a group to improve ME services, said progress had been made, despite issues.
"Progress has been slow. There are some very good services in Wales and it's a shame that not everyone has those services on their doorstep," 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".
We are about to watch a screening of an excerpt from the award-winning film “UNREST” to find out more about ME – CFS – and I am told that it is eye opening.
This will be followed by a discussion about the state of health and social care for ME/CFS in Wales, during which we will also hear from patients and carers regarding their concerns about care and support in Wales.
I look forward to seeing the film.