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ITV Wales: ME recognition & care 'lacking'

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
ME recognition & care 'lacking'

People with the condition ME in Wales say they suffer from an absence of specialist care, and have found a lack of sympathy and knowledge in the NHS and social services. The Welsh Government has admitted progress has not been universal around Wales.

People with ME 'pushed to the back and ignored'

People with the condition ME say there are no specialist services for them in Wales, and they are often confronted with a lack of sympathy and knowledge in the NHS and social services.
Campaigners marking ME Awareness Week say it's the most common neurological condition in Wales - but is often misunderstood.

Tom Sheldrick has been to speak to one woman in the Vale of Glamorgan who's living with it.

People with the neurological condition ME say there are no specialist services for them in Wales, and they have found found a lack of sympathy or knowledge in the NHS and social services here.
Michelle Penny is 28 and from Dinas Powys in the Vale of Glamorgan.

She describes how her "day-to-day life is really difficult", and that she has been "pushed to the back and ignored".

Watch video

Welsh Govt: 'Progress not universal across Wales'

The Welsh Government says "progress has not been universal across Wales" since it published a care strategy for the treatment of patients with ME in 2011.

The Welsh Government requires Health Boards to put in place measures to ensure prompt diagnosis and treatment for patients with ME. A care pathway was set out in 2011, with the involvement of the Chronic Fatigue Syndrome Task and Finish Group commissioned by the Minister for Health and Social Services in 2010.​
Last year, the Welsh Government asked all Health Boards for updates on service developments since the publication of this guidance. The responses received show that there have been some improvements, but that progress has not been universal across Wales.​
Therefore the Task and Finish Group will be reconvened this year to consider how services can be further developed to meet the needs of people with CFS and ME in Wales.​
– Welsh Government spokesperson

Neurological charity: 'We want parity for all conditions'

"We have a growing recognition and a growing investment in conditions such as Alzheimer's, but conditions such as ME are not so readily recognised or invested in" says Ana Palazon, Chair of the Wales Neurological Alliance.

"We want parity and equity of recognition and services for all conditions."

Watch video

ME 'the most common neurological condition'

The charity The Welsh Association of ME & CFS Support says there are an estimated 12,000 people in Wales, making it the most common neurological condition.
  • ME – Myalgic Encephalomyelitis - is a condition which affects the brain
  • There is no agreement over what to call it - it is often referred to as Chronic Fatigue Syndrome
  • There is currently no single identifiable cause
  • Symptoms fluctuate - they are varied, and worse after physical and mental exertion
  • A small percentage of people make a complete recovery over time
  • There is currently no cure
It is currently ME Awareness Week.
The Welsh Association of ME & CFS Support has more information on the condition

Note: It doesn't appear to want to let me embed the video links. Sorry about that :)
 

Shell

Senior Member
Messages
477
Location
England
That's a pretty good report. Perhaps if there are little doors opened on honest reporting, over time there may be a genuine push to get this hideous disease sorted out.