Plans to improve North Wales services for ME/CFS

WAMES has been asking Health Boards in Wales what plans they have to implement NICE guidelines, whether they intend to consult with patients and how they think their long COVID service might benefit people with ME.

Claire Jones, the Betsi Cadwaladr Health Board’s Long COVID Service lead tells WAMES how they are planning to extend the Long COVID service to provide improved care for ME in north Wales:

“I can confirm that we are currently in discussions both within BCUHB and with partners and leaders from across NHS Wales as a whole. These discussions are looking to develop a service model which will enable BCUHB to increase the capacity and range of support available to people with ME/CFS whilst also preserving the critically important elements of the existing service such as specialist assessment, diagnosis and individually tailored support.

Our intention is to ensure that going forward people with ME across North Wales will be able to access the full range of support/intervention identified in the new NICE guidance such as domiciliary visits, services with close links into social care support, Occupational therapy support; all of which are currently unavailable in the existing BCUHB ME/CFS service.

As you quite rightly say there is significant overlap between ME/CFS and Long COVID and we echo your sentiment that there is a real opportunity here to develop services and expand this model to others who have similar symptoms/conditions.

We are passionate about co-design and co-evaluation of services. We work closely with our Long COVID Lived Experience Group who supported the co-design of the Long COVID Pathway here in BCUHB and who continue to provide valuable feedback and perspective to us as clinicians.  We think it is important and would be very helpful to bring in ME/CFS lived experience representation as we progress our service model.  [We will] contact you again to discuss this further as the plans for this model move forwards.

For context, it might be helpful to first provide a little bit of background to what BCUHB is currently offering for Long COVID – our multidisciplinary team provides full biopsychosocial assessment, referral to appropriate diagnostics and secondary care services as indicated and an individualised plan for management of symptoms and support for adapting to life with a long term condition. The support for symptom management which we provide uses the energy envelope approach and tools such as activity diaries. We provide in-depth support for the use of these tools. PEM/PESE is very common among people with Long COVID so this is an issue which we spend a lot of time supporting people to develop their understanding of and finding ways to work with.

The Long COVID service is delivered across the whole of North Wales in community venues with the aim of providing support as close to home as possible.  The service to date has received positive feedback particularly in relation to patients telling us they feel supported, listened to and their symptoms are validated.

We recognise that while Long COVID is seen as a ‘new’ condition in that it has come about as a result of COVID-19, post viral illnesses in the wider context are not new.  All patients, regardless of diagnosis/cause of symptoms should be managed on an individual basis, taking into account what matters most to the individual and tailoring support and interventions appropriately.  Like you, we see Long COVID as an opportunity to highlight the requirement for services to support post-viral illness in a wider context.”

More about BCUHB’s Long COVID service

WAMES has been emphasising the need for all staff to be aware of the revised NICE guideline for ME/CFS and we will continue to encourage all Health Boards to #ImplementNICEmecfs 

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