Powys Health Board say they are committed to using NICE guidance
WAMES has been asking Health Boards in Wales what plans they have to implement the new NICE guidelines, whether they intend to consult with patients and how they think their long COVID service might benefit people with ME.
Powys training Health Board’s Chief Executive, Carol Shillabeer, explains their approach to ME/CFS and invites people to raise concerns and give feedback:
“Your email suggests that Powys Teaching Health Board (PTHB) is not following NICE guidance for ME/CFS. I would wish to assure you that we are committed to using NICE guidance and as far as is practicable, ensure our services operate in line with the guidance. You may be aware that the health board has the longest established and most developed ME/CFS service in Wales.
Our ME/CFS services are delivered by the Powys Living Well Service. The service encompasses support for a range of long-term health conditions and allows us to agree a tailored management plan with each person referred to the Service that addresses their specific needs. The service takes a Shared Decision-Making Approach, which ensures individuals are always involved in all decisions about their support.
The service lead has discussed your email with Dr Richard Stratton, Assistant Medical Director who is the primary contact between the Health Board and GPs in Powys. We were concerned that you feel GPs are insufficiently knowledgeable about CFS/ME. It would be especially helpful if you have any specific examples of where any resident of Powys has not been treated according to the NICE guidance and would encourage you to ask any individual to raise the concern with the practice concerned. We would be happy to facilitate this process if that would be helpful.
Referral process
Powys residents living with suspected ME/CFS are initially assessed by their GP before being referred to the Powys Living Well Service, to ensure any other medical conditions are ruled out and/or investigated. When the referral is initially received, if the investigations which are recommended in the NICE guidance have not been completed the GP will be asked to complete them before the referral is accepted by the service.
Powys includes Radnorshire, Montgomeryshire, Brecknock
Initial consultation
Everyone referred to the service is offered an initial consultation. The aim of this consultation is to agree a management plan which addresses each individual’s needs and typically encompasses interventions provided by the service as well as signposting to other public and third sector resources available to them and their supporting family and friends.
Interventions
The service offers the following interventions:
- Cognitive behavioural therapy
- Acceptance and commitment therapy
- Health coaching
- Activity management
- Pain management
- Dietary management
- Sleep management
- Management of symptom exacerbation
These interventions are delivered both individually and in groups. We offer people a choice of face-to-face appointments or appointments via Microsoft Teams. We do not advocate (nor have we ever advocated) Graded Exercise Therapy as defined in
1.11.14 Box 4 of the NICE guidance but we do work with people to improve their exercise and activity tolerance if this is something they identify as being important to them.
“The residential programme is suitable for people with a wide range of conditions including; fibromyalgia, chronic fatigue syndrome, myalgic encephalopathy, post-viral fatigue syndrome (including post-covid syndrome) , complex regional pain syndrome and myofacial pain syndrome. The programme incorporates cognitive behavioural therapy (CBT), acceptance and commitment therapy, graded exercise, activity management and mindfulness.” (Powys living well service)
Clinical Team
The Powys Living Well Service includes the following registered professionals: psychologists, physiotherapists, nurse, occupational therapist, dietician, and GP. They are supported by a team of assistant practitioners, digital facilitators, and administrators.
Experience panel
This is a panel that sits monthly and anyone referred to the service is invited to discuss service improvements. All changes to the service are discussed with this panel before being implemented. We also seek feedback from people at various stages of their journey through the service. To date we have not received any feedback either directly, or indirectly through our concerns team, that would suggest that the issues raised in your email reflect the experience of the people using the service here in Powys.
I trust this information about the service we provide is helpful.”
WAMES would like to hear from anyone who has accessed healthcare for ME/CFS in Powys, particularly in the last 5 years. Do GPs understand ME? Has the Health Board provided services that you need? Have you been offered a ‘tailored management plan’? Is there support for the housebound?
We want to hear about the successes and the failures, so we can continue to work for service improvement. #ImplementNICEmecfs
Contact jan@wames.org.uk
Read what other Health Boards say: Aneurin Bevan; Betsi Cadwaladr; Cardiff; Cwm Taf; Swansea Bay.
Around 25% of people with ME are almost completely housebound or bedbound.
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