ME/CFS service development
The development of health services for people with ME/CFS in Wales continues, although only one Health Board has fully launched their service. Staff recruitment is a slow business and Health Boards continue to experience internal pressures due to staff shortages and financial constraints.
Sixteen months ago, in March 2023, the Health Minister announced funding to:
“widen access to Wales’ long-Covid services… to people with other long term conditions whose rehabilitation and recovery are similar – for example, people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), fibromyalgia and other post-viral associated conditions.”‘
WAMES has been working hard to explain to Health Boards how Post-Exertional Malaise (PEM) affects the lives of people with ME/CFS and how this impacts symptom management.
We are pleased that many Health Boards have been keen to hear about ME/CFS from those living with the condition in their area, and that some intend to consult further with patients. We hope this will translate into appropriate services for people with ME of all ages and severities.
This is what we know about the current state of development. Please let us know if you have additional information.
Aneurin Bevan University Health Board
ABUHB are well advanced with the development of education and symptom management sessions for adults with a range of conditions. These can be accessed by referral from a GP or other health professional. They are also are exploring extending services to include children with ME/CFS.
Betsi Cadwaladr UHB
BCUHB is accepting a few people onto revised, albeit reduced, ME/CFS services in Llanfairfechan near Conwy and Connah’s Quay in the east. The Health Board continues to develop a Community Complex Conditions Service for adults, which aims to include the housebound. There are still plans to consult with residents, but this has been delayed.
The ME/CFS service offers individual biopsychosocial assessments, which can be face to face or virtual, some individual follow-up sessions if appropriate, and group work based on Acceptance and Commitment (ACT) principles. The group focuses on better managing symptoms and includes: Pacing of activity/energy management; improving sleep; diet; and stress management.
Cardiff and Vale UHB
The development of a Long Term Conditions service in the Cardiff and Vale area is well under way, and a soft launch of some self-management support sessions has begun i.e they are accepting adult participants before all aspects of the service are up and running. They are also exploring the possibility of setting up a Complex illness clinic, which could cater for the severely affected. Their information about ME/CFS can be found on the optimistically named Keeping me well website.
Cwm Taf Morgannwg UHB
The Primary Fatigue Service launched in November 2023 and is aimed at adults with ME/CFS, Long COVID and post viral fatigue.
They offer an inital assessment chat at a clinic, over the phone or at home, to work out a managment plan with you. This might include one-to-one support with one or more of the therapists, or a place on the CAMAU group programme. The programme is available in clinics or online. Information is available on their website giving their view of ME/CFS, symptoms and PEM.
Hywel Dda UHB
Plans to develop a Post Viral Service for adults and children are well under way, although less advanced than they had hoped, and the new lead for the service has recently joined the team. We are waiting to hear when they are ready to engage with the local ME community about their plans.
Powys THB
WAMES has received no information about any plans for an ME-friendly service in Powys or plans to engage with patients and carers in the area.
Swansea Bay UHB
SBUB is developing “multi-professional rehabilitation services to our population living with long term conditions which includes ME/CFS, Long Covid, Fibromyalgia, pain and post viral illnesses”. There will be a service for both adults and children, and they have been recruiting staff over the last few months. If you are in touch with the Value Based healthcare team in the HB, you will already have had the opportunity to have your say about services via questionnaires and interviews.
WAMES is also encouraging Welsh Government and Health Boards to consider the care needs of the severely affected, both at home and in hospital, with little action so far.
If you would like to join us and get involved with advocating for better services in your area, or on a national level, OR just gives us information about your experiences, please get in touch: jan@wames.org.uk
