Health services for ME in Wales – a WAMES update
WAMES in Wales
It is now 20 years since the Welsh Government (WG) was established. At that time NHS Wales became independent and WAMES began campaigning in Wales for improvements to health services. Over the years we have talked to numerous Health Ministers, civil servants, AMs, Health Board executives and NHS staff. We have taken part in focus groups, stakeholder groups, working groups and scoping exercises. We have run surveys of patient experience and campaigns to raise awareness in government and the NHS.
That is what WAMES has done, largely behind the scenes, to try to improve healthcare for people with ME. How did the Welsh Government and NHS Wales respond?
Welsh Government & ME
- Since 1999 many AMs over the years have joined us in asking questions about the lack of awareness and services, leading to one of the largest postbags the government have received on a single medical condition.
- In 2004 a series of Masterclasses were planned around the country. The interest shown by GPs was so low, only one took place.
- In 2009 a Task & Finish Group was set up to explore whether a clinical pathway was needed and decided it was.
- WAMES joined a pathway working group to produce a Map of Medicine pathway for Wales. This was unfortunately based on the NICE guidelines and shortly afterwards the WG withdrew from the Map of Medicine database (based in England).
- The Health Minister wrote to Health Boards urging them to implement the pathway and improve services. None appeared to do so.
- In 2013 a second Task & Finish Group was set up with representation from the WG, NHS and patients. A report was published in 2014 outlining steps each Health Board should take to improve services. Few Health Boards have implemented more than one or two of the steps!
- In 2014 An All Wales Implementation group (AWiG) was set up with reps from WG, the NHS and patients to oversee the implementation of the report.
Has healthcare for ME improved?
It is clear that there is an increase in the number of GPs who have heard of ME, though many still wish to call it CFS and focus on fatigue. There is still a belief that ME is difficult to diagnose and nothing can be done to help. Some still believe it is a psychological condition or that it simply doesn’t exist at all. Many patients tell us they still cannot find someone within Wales to give them an informed diagnosis or to refer them to support services.
WAMES and local groups in Wales still get too many helpline calls from people who are enduring appalling treatment from untrained and prejudiced health care professionals.
The existing services for pain and fatigue continue to offer rehabilitation services based on GET and CBT, though few people with ME are interested. Reports of relapse caused by this approach continue to reach us from people with ME who have undergone the course in NW Wales. Suicides and attempted suicides have increased in number.
Why is progress so slow?
There are many possible reasons contributing to this:
- Continuing reorganisation and financial difficulties in Health Boards
- Constantly changing personnel in HBs and Welsh Government
- Lack of a clinical champion for Wales
- No funding from the Welsh Government
- Insistence that answers should come from within Wales, when no-one has sufficient experience or knowledge of ME
- No obligation for HBs to implement improvements
- Overworked doctors, who are waiting for a diagnostic test and treatments to materialise before becoming involved with this patient group
- An unwillingness to look beyond NICE and listen to patients and explore the biomedical research
- A feeling that ME is controversial due to the continuing activities of a biopsychosocial community that view ME as perpetuated by muscle deconditioning and faulty illness beliefs – in contradiction to the latest research.
WAMES believes that a key stumbling block is the shortage of informed GPs willing and able to diagnose. Should diagnosis improve there would be statistics of the numbers and location of patients and it would be harder for HBs to ignore ME. The evidence for the need for services for this patient group would then be clear.
The All Wales Implementation Group (AWIG) has a new government policy lead.
Current work priorities are:
- Inclusion of ME/CFS in IMTPs (Health Boards 3 year work plans)
- Redesigning a clinical pathway
- Developing patient information sheets
Discussing the development of GP training resources with Health Education and Improvement Wales (HEIW)
- continue to represent people with ME on AWiG
- continue to explore awareness raising possibilities with the RCGP;
- work with the NHS in devising an ME self-management programme
- represent Welsh people with ME on the NICE guideline review
- take every opportunity to raise awareness of neurological ME in NHS Wales
Get in touch if you would like to support WAMES continue its work to improve services for people with ME in Wales firstname.lastname@example.org