WAMES asks NHS Wales:  Don’t delay!

Implement NICE ME/CFS guideline
for safe, empathetic & equitable healthcare

Poor healthcare for many with ME/CFS in Wales

A new WAMES report into the implementation in Wales of the 2007 NICE guideline illustrates how:

• few GPs admit being aware of the guidelines and those who do, are often selective in what they implement
• many GPs failed to accept that ME is a real, debilitating condition
• it is difficult to find GPs who feel confident enough to diagnose
• many GPs show patients with suspected ME little ‘respect, sensitivity and
  understanding’
• very few GPs are able or willing to give patients information about the illness, its management and the possibility of relapses, or help them develop a care plan
• there is no accepted management pathway – even if  there are specialist teams offering management advice or GET & CBT in an area, GPs often don’t know they can refer patients to them

“I spoke to him about latest research about a connection to autoimmune and he said we’ve done blood tests so you are fine. He said ‘we use NICE and I need to refer you to the psychology team’. He didn’t offer any more help than that.”

Earlier this year, before the publication of the revised NICE guideline for ME/CFS was delayed, WAMES asked people in Wales to tell us about their GP consultations. The response was low but we were grateful to the people who made the effort to share their experiences.

“Following routine bloods, I was called into surgery because of slight weight gain – new GP was confused about ME/CFS, used Internet to come up with GET, had no grasp of what that was, nor any understanding that the NICE Guidelines were under review. Whole thing was a tick box exercise, a wasted GP appointment and no help whatsoever to me.”

It was disappointing to hear the same kind of stories we have been hearing for decades. Patients often count themselves fortunate if a GP admits they have no knowledge, but are still concerned enough to spend time looking for something to help relieve their symptoms!

“The doctors… have poor understanding of the condition, especially the GPs, which of course then filters through to the rest of the practice. Not even a basic level of care, and crass remarks. I visit them as little as possible as it upsets me too much. This very much adds to a sense of isolation, hopelessness and being forgotten about.”

NICE also received  many examples of poor care and harm from treatments 

The WAMES report also explores the wide range of examples of poor healthcare that the NICE guideline committee received during the revision process. These include:

• a lack of belief about ME/CFS as a real condition
• a lack of understanding about what it is and the disabling impact it has, especially for the severely affected, including its fluctuating nature
• confusing symptoms with signs of abuse or neglect, especially in children or the severely affected
• difficulties accessing services due to distance, mobility, sensory overload etc
• post code lottery for specialist services
• harm reported from unstructured physical activity and inflexible exercise therapy designed to treat deconditioning

The new guideline is a ‘triumph of science over discrimination’.

Patients, and many doctors, researchers and physiotherapists have been vocal in welcoming the new guideline, which has a much improved definition of ME/CFS, a rejection of harmful inflexible therapies (GET & CBT) based on a theory of ‘deconditioning’ and ‘unhelpful illness beliefs’, a focus on energy management to avoid exacerbation of  symptoms (PEM).

There is a real opportunity for the 2021 NICE guideline to end the ‘health and social care crisis‘ for people with ME/CFS in Wales.

WAMES is therefore asking the NHS and health professionals in Wales not to delay any longer:

• follow the science
• listen to patients and carers
• begin the process of developing a safe, empathetic and equitable healthcare service for people with ME/CFS
• no delay – begin to implement the 2021 NICE ME/CFS guideline today!

Download the report: Is NICE ME/CFS guidance implemented in Wales?