Swansea Bay UHB implements ME/CFS NICE guideline

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.

Swansea Bay University Health Board (formerly ABMU) covers Neath Port Talbot and Swansea areas. Responsibility for providing healthcare services in the Bridgend County Borough Council area passed from ABMU to the new Cwm Taf Morgannwg UHB in 2019. [SBUHB]

Swansea Bay University Health Board’s Chief Executive Mark Hackett shares their current and future plans for healthcare services for ME with WAMES:

Thank you for your email requesting information about changes people can expect from NHS services since the publication of the updated NICE ME/CFS guideline in October 2021. I’m happy to respond as follows:

Access, diagnosis and referral

Swansea Bay UHB

GPs will identify signs and symptoms of ME/CFS and will initiate relevant investigations to exclude any other causes. Patients with suspected ME/CFS are diagnosed by GPs using (since 2018) a diagnostic tool developed in conjunction with the Rheumatology Consultants in our Rheumatology Occupational Therapy Service. This tool has been amended in view of the updated guideline and the NICE implementation statement published on 12th May 2022, and should soon be available to GPs on the Welsh Clinical Communications Gateway.

Rheumatology is the study of rheumatism, arthritis, and other disorders of the joints, muscles, and ligaments. (OED)

As this diagnosis can have lifelong implications for patients, GPs often refer patients for confirmation of diagnosis and for reablement, rehabilitation, complex needs and ongoing management or to social care services. Our Rheumatology Occupational Therapy Service currently accepts referrals from consultants and primary care GPs for adults with a confirmed diagnosis of ME/CFS. Rheumatology colleagues’ advice, discussion and education enhances confidence among GPs in diagnosing ME/CFS, avoiding delays.

Any other health and social needs are being managed within primary care and referred into appropriate specialities/pathways. Some aspects of these patients’ needs e.g. lifestyle advice, nutrition, weight management, symptom control, given possible similar symptom presentation, are guided by Welsh Government to sit within Health Boards’ Long Covid services.

The SBUHB Rheumatology Occupational Therapy Service

The Occupational Therapy service is our only specific service for those with a diagnosis of ME/CFS. This is an adults-only uni-professional service, provided by a team which also sees a range of rheumatological conditions e.g. fibromyalgia, osteoarthritis, rheumatoid arthritis and hypermobility.

Occupational Therapy intervention ensures holistic, meaningful and realistic goals are established. The risks and benefits of physical activity and exercise are discussed with patients who want to incorporate or increase this in their daily routine.

Specific occupational therapy intervention is provided to address functional limitations through a focus on daily activities, roles and responsibilities meaningful to the individual, using a person- centred, self-management approach. Interventions are co-produced in line with patient- identified values, aims and activity tolerance limits.

Various options are available for people to access appointments, including phone calls or virtual and face-face meetings, and we are supportive and flexible in offering an alternative appointment when needed. If employment or education needs are identified, the individual is signposted to SBUHB work-based initiatives and third sector organisations that can support work and training needs. The service operates a waiting list but consistently meets the Welsh Government Referral to Treatment target of 14 weeks.

An occupational therapist helps people of all ages overcome challenges completing everyday tasks or activities – what we call ‘occupations’. Everything is focused on increasing independence and wellbeing. (RCOT)

There is no specialist clinical lead or team for physiotherapy provision, therefore no multidisciplinary team assessments for ME/CFS are conducted, nor care and support plans completed. However, all members of the Occupational Therapy Team are aware of the recommendation for establishing an individual’s baseline and working within their energy parameters without attempting to exceed their limits. In the event of a patient’s evident psychological distress, they will be signposted to psychological medicine or mental health services as there is no specialist provision for psychological therapies for those with ME/CFS. Supporting families and carers’ needs are addressed as required.

Our other therapy services accept referrals for patients with this condition but they are managed within generic caseloads within multiple services e.g. persistent pain service, neurology or musculoskeletal physiotherapy outpatients. For example, the persistent pain service has accepted referrals for people with ME/CFS for a multidisciplinary service, however clinicians are not specifically trained in ME/CFS – they have relevant skills from working in pain services and can support people who have ongoing pain as part of their presentation.

The SBUHB Long Covid Service

This service has been developed in response to the needs of and demand from our local population. It involves several approaches with rehabilitation and self-management at the core, delivered through virtual group consultations, webinars, face-to-face rehabilitation meetings and/or via online resources.

Under the ’Adferiad’ programme, resources have been developed for Long Covid which may have value for other patient cohorts due to the nature of shared symptoms. These include a chronic fatigue workbook which will be made available to Secondary Care specialities and Primary Care. The funding of this programme is time-limited, with adverse implications for service development for other chronic conditions. We are currently not offering a combined referral pathway for ME/CFS and Long Covid as NICE distinguishes these as separate conditions.

Nevertheless, there have been discussions regarding the ME/CFS client group and others with post-viral and fatigue-related conditions, and possible integration with the Long Covid Service within our pulmonary rehabilitation and wellbeing services. For example, we are aware of the evidence with regard to PEM/PESE, and while it is noted that this is not mentioned in the list of symptoms, assessment and treatment from the Long Covid Service is tailored accordingly.

Service developments

The following service developments are in progress:

our training resources are being reviewed to ensure they reflect the NICE ME/CFS guideline and implementation statement
we are adopting flexible case-by-case support for ME/CFS patients who did not attend or were unable to attend appointments
the Occupational Therapy Team may currently refer patients to the out-patient physiotherapy service for exercise planning or to the National Exercise Referral Scheme, and will consider dietician referral where appropriate. Plans to further develop this referral pathway to dietetics are underway and resource identified, however there is no specialist provision in this development for the ME/CFS patient group
within the Long Covid Service we continue to develop educational resources, group consultations and webinars for common symptoms such as fatigue, breathlessness, muscle ache and low mood, and lifestyle advice on weight management, exercise, nutrition, mental health etc. We expect to widen referral to these resources to ME/CFS patients and others who present with these symptoms.”

WAMES would like to hear from anyone who has accessed healthcare for ME/CFS in the SBUHB area since the publication of the revised ME/CFS NICE guideline. 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; Powys