Situation for ME patients in Wales is ‘disgraceful’
a translation of: Sefyllfa i gleifion ME yng Nghymru yn ‘warthus’ on the BBC Cymru fyw website, 24 Oct 2018 (This translation is not definitive, it may need some tweaking!)
Emma-Jayne Lloyd from Cardiff shares her experience of living with the condition of ME.
The situation for people in Wales who suffer from the condition of ME, or chronic fatigue syndrome, is “disgraceful”, according to one specialist in the field.
Charities will be holding a protest at the Senedd in Cardiff Bay on Wednesday to show a movie about the disease.
Jan Russell, from WAMES (Support Society ME and CFS Cymru), has called the lack of diagnosis and lack of advice on symptoms “a health and social care crisis, even a humanitarian crisis”.
The Welsh Government said “health boards in Wales are responsible for the healthcare requirements of their populations”.
‘Lack of understanding’ of chronic fatigue
Speaking on the BBC’s Eye On Wales program, Charles Shepherd, a medical advisor to the ME Association, said:
“From my experience with patients in Wales, many GPs are still very uncertain about how to diagnose this illness.
“They’re just as insecure about how to manage the illness.
“There are five adult services in Wales but none of them are led by a multidisciplinary doctor, and that is what these services should be.
“Overall, the situation in Wales is scandalous.”
Mistaken ME for depression
Emma-Jayne Lloyd, aged 39 and from Cardiff, has suffered from ME symptoms since she was 18, but only last year she was given an official diagnosis.
“Imagine rising in the morning with a hangover, flu and the worst jet-lag you’ve ever had, all mixed up together,” she said.
“Then imagine that you get up every day and feel like that. That’s what ME is.
“The pain is all through the body, you are so tired and you’re so weak that you cannot get up, or dress, or try to make food – everything is difficult.
“Everything you do, you must think about, because everything causes pain, or can cause you to go back to bed and sleep.”
Two years ago Emma-Jayne had to stop her job as a teacher, and she does not drive now
For years, doctors thought she was depressed, and Ms Lloyd says that health workers are only beginning to understand ME.
She says that ME clinics and consultants are available in England, but there is no such provision in Wales.
“There’s nothing in the blood, so they all think it’s something mental,” he said.
“There is no medication, no consultants, no clinic here.
“If you break your arm or have cancer, you know that you can go somewhere and someone with expertise can talk to you – but there is no one with expertise in ME in Wales . “
‘Change is slow’
In 2014, recommendations were made to the Welsh Government on how to improve diagnosis at primary care level, as well as treating and managing symptoms.
An action group was set up in 2015 to work with Local Health Boards across Wales to make these recommendations active.
Owen Hughes, who chairs the action group, said “progress has been slow”.
“There are some very good services in Wales and it’s a shame that everyone does not have those services on their doorstep,” he said.
“That is part of the role of the action group – to share good practice and ensure that everyone is able to access high quality information and services.”
What is ME?
Around 13,000 people in Wales suffer from ME (Myalgic Encephalomyelitis), or chronic fatigue syndrome (CFS).
70% of people with the disease are women – and it is more likely to hit people between their twenties through to their 50s.
The disease is usually triggered by a viral infection.
Symptoms include muscle tiredness caused by activity, often with pain, as well as neurological symptoms such as short-term memory loss and ‘brain fog’.
Patients can also have problems with balance, ability to find words and lack of temperature control.
There is no complete cure to the condition, but symptoms with early diagnosis and with the right advice can be improved.
#TimeForUnrestWales
