Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Services in Scotland: Findings from an analysis of surveys issued to NHS Boards in Autumn 2022

5. Results

This section summarises the results of the survey based on the responses of ten NHS Health Boards. Where appropriate, the two responses from NHS Dumfries and Galloway are considered separately.

5.1 NHS Board pathway from referral to support by service

Overall, ME/CFS support services were delivered in a variety of ways: by generalist services within primary and secondary care, specialist staff with ME/CFS training, services that provided support for long-term conditions with similar symptoms (such as Long COVID or chronic pain), or third sector organisations.

Table 1 shows, in alphabetical order, where NHS Boards receive their ME/CFS referrals from. Table 2 shows what primary support is offered to people with ME/CFS by each NHS Board. Table 3 shows what secondary support is offered by NHS Boards if there is no specialist service for ME/CFS or similar long-term condition management service available.

Table 1: Where NHS Boards receive their ME/CFS referrals from

NHS Borders

Referrals from: No response

NHS Dumfries and Galloway (Allied Health Professionals)

Referrals from: General and specialist community rehabilitation

NHS Dumfries and Galloway (Clinical Health Psychologists)

Referrals from: General Practitioner (GP), Secondary Care Nursing, Secondary Care Medical, Dietician, Health Visitor, Neurology, Pain Clinic, Physiotherapy, Occupation Therapy, Psychiatry, Community Mental Health Team.

NHS Fife

Referrals from: GPs and Secondary Care Consultants

NHS Forth Valley

Referrals from: GPs

NHS Greater Glasgow and Clyde

Referrals from: GPs and Secondary Care Consultants

NHS Lanarkshire

Referrals from: No response

NHS Orkney

Referrals from: No response

NHS Shetland

Referrals from: "usual route"

NHS Tayside

Referrals from: No response

NHS Western Isles

Referrals from: GP

Table 2: What primary support is offered to people with ME/CFS by each NHS Board

NHS Borders

ME/CFS primary support offered: No specialist or related ME/CFS service

NHS Dumfries and Galloway (Allied Health Professionals)

ME/CFS primary support offered: No specialist or related ME/CFS service

NHS Dumfries and Galloway (Clinical Health Psychologists)

ME/CFS primary support offered: Clinical Health Psychology Service (only when ME/CFS is a major factor in a person's psychological distress)

NHS Fife

ME/CFS primary support offered: Clinical Nurse Specialist Service in ME/CFS (primary care)

NHS Forth Valley

ME/CFS primary support offered: No specialist or related ME/CFS service

NHS Greater Glasgow and Clyde

ME/CFS primary support offered: NHS Centre for Integrative Care (CIC)^[1]

NHS Lanarkshire

ME/CFS primary support offered: No specialist or related ME/CFS service

NHS Orkney

ME/CFS primary support offered: Funded Physiotherapist for Long COVID/ME patients (capacity limited)

NHS Shetland

ME/CFS primary support offered: No specialist or related ME/CFS service

NHS Tayside

ME/CFS primary support offered: No specialist or related ME/CFS service

NHS Western Isles

ME/CFS primary support offered: No specialist or related ME/CFS service

Table 3: What secondary support is offered by NHS Boards if there is no specialist service for ME/CFS or similar long-term condition management service available

NHS Borders

ME/CFS secondary support offered: Most appropriate clinical services (Physiotherapy, Occupational Therapy, Pain Management Service, GPs with special interest in ME/CFS) and third sector support (Live Borders for physical and mental wellbeing)

NHS Dumfries and Galloway (Allied Health Professionals)

ME/CFS secondary support offered: Regional general and specialist Community Rehabilitation, Occupational Therapy, Physiotherapy, Nursing, Dietetics, Psychology Services, and third sector services such as Active Communities and Leisure Facilities (although not specific ME/CFS services)

NHS Dumfries and Galloway (Clinical Health Psychologists)

ME/CFS secondary support offered: Occupational Therapy, Physiotherapy, Silvercloud, Pain Clinic, Health & Wellbeing Team, Social Work, Community Mental Health Team, Psychiatry

NHS Fife

ME/CFS secondary support offered: Third sector agencies (Action for ME, ME Association, Pain Association Scotland) and a range of clinical services based on individual need: Psychology, Neurology, Pain Clinic, Gastroenterology, Psychiatry, Medicine, Physiotherapy, Social Work, Occupational Therapy

NHS Forth Valley

ME/CFS secondary support offered: Primary Care and Secondary Care (specific areas such as Paediatrics and Physiotherapy)

NHS Greater Glasgow and Clyde

ME/CFS secondary support offered: In-house CIC programmes^[2], live Active, Online yoga, Orthotics, Westmarc Wheelchair Services, Community Rehabilitation, Chaplaincy Listening Service, Community Connectors – Social Prescription, Musculo-skeletal Physiotherapists, Occupational Health, Online resources (ALISS, Moving into Balance, IMPARTS), Andrew Weil Centre for Integrative Medicine, third sector (Alliance, Citizens Advice, Cycling for Disabled, Macmillan Cancer Support)

NHS Lanarkshire

ME/CFS secondary support offered: Primary Care (Occupational Therapists) and Secondary Care (specialist referrals to Paediatrics), COVID Rehabilitation Pathway, Community Stroke and Neurological Pathway, Community Brain Injury Pathway (Allied Health Professional and Psychology staff), Rheumatology Occupational Therapy, and Physiotherapy

NHS Orkney

ME/CFS secondary support offered: Communication between physiotherapist and physicians

NHS Shetland

ME/CFS secondary support offered: Support from GPs, Allied Nurse Practitioners, Physiotherapy, Community Mental Health Team (Psychologists), Occupational Therapists, and third sector "Mind your Head" for mental health support

NHS Tayside

ME/CFS secondary support offered: Secondary Care Services (Rheumatology, Neurology, Respiratory, Psychiatry, and Paediatrics)

NHS Western Isles

ME/CFS secondary support offered: Support of symptoms from Primary Care (GP, Physiotherapy, Occupational Therapy, Specialised Respiratory Assessment and Management service), online resources from the NHS Western Isles Central Coordinator, and third sector organisations such as Pain Association

The above tables show that only one responding service had a specific ME/CFS pathway for patients in their health board (NHS Fife) and three other boards cited staff trained in ME/CFS support as the primary service offered to people with ME/CFS (NHS Dumfries and Galloway, NHS Greater Glasgow and Clyde, NHS Orkney). All other NHS Boards who responded to the survey reported that ME/CFS patients were managed through primary or secondary care, third sector organisations, or received support that was integrated with other long-term condition management pathways. Some practitioners in these pathways were reported to be trained in treating and managing symptoms similar to the approaches advocated in the new ME/CFS clinical guidance.

The responses show that people with ME/CFS are identified through Case Consensus Definition (CCD) or Canadian diagnostic criteria (NHS Fife), symptomatic assessments (bloods and further investigation as required) (NHS Borders), NICE NG206 guidelines (NHS Shetland), by a senior doctor through Active Referral Clinical Triage (ACRT) (NHS Greater Glasgow and Clyde), GP (NHS Western Isles), or other primary care services (NHS Lanarkshire). One NHS Board highlighted that ME/CFS may co-exist with other long-term conditions and co-morbidities making referrals complex. Thus, ME/CFS may emerge as a main concern after assessing multiple symptoms and ruling out other conditions (NHS Greater Glasgow and Clyde, NHS Tayside, and NHS Lanarkshire). NHS Shetland responded that not all referrals for people with ME/CFS are accepted and other times they need to be referred to NHS Grampian. Four NHS Boards did not mention whether people with ME/CFS were self-referring for support or were referred from other healthcare areas or services (NHS Borders, NHS Lanarkshire, NHS Orkney, NHS Tayside).

5.2 How support is being delivered

Table 4 shows the nine NHS Boards that gave details about how support was being delivered. Some NHS Boards provided a significant range of options in terms of mode of delivery, while others provided a more limited range of options.

Table 4: How support is being delivered by NHS Boards

NHS Board	Face to Face	Phone	Email	Video	Web Forum	Web Delivery
NHS Borders	X	X		X
NHS Dumfries and Galloway	X	X	X	X		X
NHS Fife	X	X	X	X	X
NHS Forth Valley	X	X
NHS Greater Glasgow and Clyde	X	X	X	X
NHS Lanarkshire	X	X		X		X
NHS Orkney	X
NHS Shetland	X	X		X
NHS Tayside	No response to question
NHS Western Isles	X	X		X	X	X

The responses showed that all NHS Boards who responded to this question (n=9, 100%) provided face-to-face support. Remote support through phone (n=8, 89%) and video (n=7, 78%) were the next most common delivery modes. A third of NHS Boards that responded said that they provided support via email (n=3, 33%) and/or via web delivery (n=3, 33%). Web forum was the least common mode (n=2, 22%).

5.3 Who is delivering support

Table 5 shows which staff members support people with ME/CFS for each NHS Health Board. The results show that Occupational Therapists, Physiotherapists and Nurses comprised the roles most commonly providing support, followed by doctors (including GPs) and Clinical Psychologists. A multi-disciplinary approach was evident in some NHS Boards with a range of practitioners providing support, while other NHS Boards involved a narrower range of staff.

Table 5: Which staff member is supporting people with ME/CFS^[3]

	OT	PT	Nur	Doc	CP	Di	MHN	Cou	TI	FI	Vol	Other
NHS Borders	X	X	X	X	X					X
NHS Dumfries and Galloway	X	X	X	X	X				X			* #
NHS Fife			X								X
NHS Forth Valley	X	X	X	X								*
NHS Greater Glasgow and Clyde	X	X	X	X								~
NHS Lanarkshire	X	X	X	X	X	X	X	X	X	X	X	*
NHS Orkney		X
NHS Shetland	X	X	X		X		X	X
NHS Tayside												*
NHS Western Isles	X	X	X	X	X	X	X					*

Response to other:

* Any services requested by primary care can be accessed

~ Art Therapist (trainee students), Complementary Therapist, Acupuncturist (Clinical Nurse Specialist), Bowen Therapist (Doctor), Counselling Psychologist (trainee students), Music Therapy (occasional trainee student)

# Counselling Psychologist & Specialist Psychological Therapist

5.4 Awareness and implementation of NICE guideline changes

NHS Boards were asked about their awareness and implementation of the changes to the NICE guidelines regarding ME/CFS management, specifically around the advice on GET and CBT.

Tables 6 and 7 show the majority of the eight NHS Boards who responded to this question were very aware of updated NICE guidelines on GET (n=6, 75%) and CBT (n=5, 63%), or at least moderately aware of guidelines on GET (n=7, 88%) and CBT (n=8, 100%).

Table 6: How aware NHS Boards are about the NICE guideline changes about Graded Exercise Therapy (GET)

	GET
	Not aware	Slightly aware	Somewhat aware	Moderately aware	Very aware
NHS Borders					X
NHS Dumfries and Galloway				X[4]	X
NHS Fife					X
NHS Forth Valley					X
NHS Greater Glasgow and Clyde					X
NHS Lanarkshire				X
NHS Orkney	No response
NHS Shetland					X
NHS Tayside		X
NHS Western Isles	No response

Table 7: How aware NHS Boards are about the NICE guideline changes about Cognitive Behavioural Therapy (CBT)

	CBT
	Not aware	Slightly aware	Somewhat aware	Moderately aware	Very aware
NHS Borders				X
NHS Dumfries and Galloway			X		X
NHS Fife					X
NHS Forth Valley					X
NHS Greater Glasgow and Clyde					X
NHS Lanarkshire				X
NHS Orkney	No response
NHS Shetland					X
NHS Tayside				X
NHS Western Isles	No response

Despite the awareness of the guidance changes reported across the majority of the NHS Boards who responded, formal implementation of the wider ME/CFS guidelines was varied.

NHS Fife, which has a dedicated service for adults with ME/CFS, reported that they had implemented the changes to their services, continue to train staff, and liaise with secondary, community, and other NHS Boards seeking advice. However, this was not the case for children and young people as there is no dedicated ME/CFS service for this group, who are referred to a general care pathway instead.

NHS Greater Glasgow and Clyde, which supports symptoms of ME/CFS through their Centre for Integrative Care (CIC), responded that it supported ME/CFS patients through pacing rather than GET and that CBT was often included in individual treatment plans as a form of person-centred support rather than a cure. Despite not having a specific ME/CFS service, training was provided for Allied Health Professionals and Physiotherapists (Band 5), who have become a specialist resource for other health care professionals interacting or treating people with ME/CFS. This includes the support offered to people with ME/CFS through the long-term condition management programmes offered by CIC. This Board also reported utilising patient and carer feedback to inform person-centred care programmes, such as the Holistic Day Service Programme.

NHS Lanarkshire reported that it incorporated the updated guidelines into other long-term condition management services where symptoms may overlap (such as a Long COVID patient workbook, a Fibromyalgia pathway and generic fatigue management programme). This NHS Board also highlighted that there was awareness training around the guidelines for the primary care Occupational Therapy team.

NHS Borders and NHS Dumfries and Galloway (AHPs) responded that staff engaging with ME/CFS patients were aware of the guideline changes and will continue to monitor the way in which support is given. However, NHS Dumfries and Galloway highlighted that awareness and communication of guideline changes varied across the region and that this is something an area of focus for them.

Some NHS Boards responded that there was a lack of implementation because there was not a specific service within which they can implement changes, and that some NHS Boards reported primary or secondary care referring individuals to third sector or community options. In addition, lack of dedicated funding, no training or service delivery capacity, and increased caseloads of long-term condition management due to the impact of COVID-19 were cited as barriers to implementing the guidelines. Two NHS Boards reported minimal progress with implementing the NICE guidelines, however this may be reflective of both Boards lacking a specific referral pathway for people with ME/CFS.

5.5 Barriers and opportunities to implementing updated NICE guidelines

Table 8 shows the grouped themes across the seven NHS Boards who provided responses when asked about potential barriers and opportunities around implementing the new NICE guidelines.

Table 8: Emerging themes from responses about the barriers and opportunities around implementing updated NICE guidelines

Barriers: Financial and resource constraints

Opportunities: Improving treatment and symptom management through specific ME/CFS resources

Barriers: Challenging 'traditional' views about ME/CFS management and treatment

Opportunities: Improving outcomes for ME/CFS patients and for patients with other long-term conditions

Barriers: Application of the guidelines in Scotland might be slow to develop

Opportunities: Education of staff (increased awareness about ME/CFS through training and development, ability to recognise symptoms early)

Barriers: General lack of knowledge around ME/CFS and recognising symptoms early

Opportunities: Utilising MDT staff to support ME/CFS patients and treatment management

Barriers: Existing patient barriers to accessing support – lifestyle, stigma, lack of awareness to report symptoms

Opportunities: Patient engagement (raising awareness of symptoms and empowerment through self-management of their condition)

Opportunities: Strengthen and create links to ME/CFS and long-term condition support pathways and stakeholders (for example, third sector organisations and public health strategies)

Half of the NHS Boards that responded reflected that opportunities in the new NICE guidelines would be contingent on increased funding and resources increasing. Four NHS Boards chose not to respond to the questions about barriers and opportunities.

5.6 Plans for specialist ME/CFS services

When asked if they had plans to develop specialist ME/CFS services in the future, out of the 11 responses, two NHS Boards said that they already had services in place, one NHS Board said that they had plans to link in with Long COVID support pathways, five said that they did not have plans to develop specialist services for ME/CFS in their area, and three NHS Boards chose not to respond to this question^[5].

NHS Fife and NHS Greater Glasgow and Clyde responded that they already have services in place, however staff in these NHS Boards delivering support are not part of an ME/CFS specific service. The services for patients with ME/CFS in NHS Fife are led by a nurse in a community setting who also treats other long-term conditions. However, NHS Fife also highlighted that this was a single-person post with limited capacity, with support needing to be expanded to other MDT members to "reduce waiting times and better meet demands." NHS Greater Glasgow and Clyde services to ME/CFS patients are delivered through the Centre for Integrative Care (CIC) and Allied Health Professional (AHP) services. CIC staff include Associate Specialists, Specialist Doctors, Clinical Nurse Specialists, Complementary Therapists, Administrative Staff, Secretaries, and a number of students on placement. AHP staff include Physiotherapists (Bands 5 and 6), Occupational Therapy, and a generic Health Care Support Worker. This NHS Board also responded that having a team delivering service specific care to ME/CFS would "provide the opportunity to ensure robust, measured implementation of the guidelines, provide education to other AHPs working with CFS/ME patients within generic services and provide targeted care for this patient group."

NHS Dumfries and Galloway has plans to extend the support offered by the Allied Health Professionals to develop a ME/CFS service by linking support with Long COVID services, GP, Occupational Therapy and Psychology staff. In order to do this, they hope to develop the wider MDT and specialist service model in the area, and include user involvement in the development of this service (through strengthening links with local networks, voluntary groups, and buddy/mentor programmes).

NHS Lanarkshire's response did not indicate that they planned to develop a specific ME/CFS service, but they referenced financial and resource challenges, and waiting lists, as barriers for new service developments, coupled with continued stigma around ME/CFS that impacts service user engagement for improved services.

5.7 Potential benefits of combined long-term condition pathways

All ten NHS Boards who responded to this survey identified 'significant' synergies between ME/CFS and Long COVID pathways. As considered above, some NHS Boards reflected that implementing the NICE guidelines would also provide an opportunity to improve outcomes for patients with other long-term conditions.

NHS Fife identified that shared expertise could improve research, clinical care, and self-management for both conditions, and could reduce service demand. NHS Borders identified that a Long COVID Clinical Lead will allow opportunities to review the pathways and management approach for multiple long-term conditions, including ME/CFS, which could contribute to improved patient outcomes and service development. NHS Shetland conceptualised a shift from an acute, reactive, crisis intervention model, to a supportive service and self-management approach for long-term conditions more broadly actualised through establishing peer support and community options. NHS Greater Glasgow and Clyde highlighted opportunities for learning and potentially integrating assessments and treatment approaches for Long COVID and ME/CFS into physiotherapeutic practices within an individualised treatment and management pathway. NHS Tayside noted that a Long COVID pathway would share common opportunities and types of intervention with a ME/CFS pathway.

5.8 Provision of outcome data/patient feedback

NHS Boards were asked about whether they were provided with feedback from patients or outcome data to help them understand the impact or experiences of people with ME/CFS using their services. The results in Table 9 show that only three NHS Boards (NHS Fife, NHS Greater Glasgow and Clyde, NHS Lanarkshire) reported capturing outcome data or patient feedback. Outcome measures comprised of satisfaction surveys in addition to a range of clinical outcome surveys/tools. The low use of outcome data/patient feedback may be linked to the fact that very few NHS Boards who responded use specific ME/CFS services to support patients.

Table 9: NHS Boards that capture outcome data and/or patient feedback

NHS Fife

Types of Outcome Data/Patient Feedback: Patient opinion website reports, service led surveys, patient satisfaction surveys, open suggestions from patients both individually and through local support groups, national charity agencies, colleagues, and professionals.

Clinical outcomes measured using selective forms applicable to case management.

NHS Greater Glasgow and Clyde

Types of Outcome Data/Patient Feedback: Centre for Integrative Care (CIC) conducts audits to assess outcome measures (using Patient Reported Outcome Measures (PROMS), MYMOP2, WEMWEBS, and FSS).

Patient and carer feedback through the CIC and the Friends of Centre for Integrative Care (not all are ME/CFS patients).

The Allied Health Professional service do not yet use outcome measures specific to ME/CFS, PROMS are used for 'Moving Into Balance' classes that are accessed by patients with a range of conditions, which is not specific to ME/CFS.

NHS Lanarkshire

Types of Outcome Data/Patient Feedback: Canadian Occupational Performance Measure (COPM) and Short Warwick Edinburgh Mental Wellbeing Scale (SWEMWBS) collected by Primary care OT for ME/CFS patients.

Some patient feedback received via Care Opinion.

Physiotherapy use MFI (Management of Fatigue Index) and SF36 (Short Form (36) Health Survey)

5.9 Additional reflections from NHS Boards

Six NHS Boards shared the same feedback in relation to future directions, demonstrating a shared desire to improve research and resource to understand and assess a range of clinical features and symptoms associated with ME/CFS:

"Nationally, NHS Scotland should be looking to be a world leader and actively researching emerging theories of ME/CFS - the links to hypermobility, spine issues, autoimmunity, dysautonomia, cerebral blood flow etc. NHS Scotland does not have a single upright cross-sectional scanner (CT or MRI), a vital tool for assessing stress on the upper spinal cord and likely neurological dysfunction."

Additionally, NHS Greater Glasgow and Clyde highlighted a range of interventions and service developments that they are piloting or planning to support people with ME/CFS. Support includes:

• The Lightning Process within ME/CFS and Long COVID Unit,
• Shared learning and working through induction of AHPs from Neurological Outpatients Department and Pain Services,
• Class focused on pacing and new guidelines around movement as a bridge between physio and community services,
• Occupational Therapy support to provide holistic (mental and physical health) non-pharmacological interventions that optimise function and enhance quality of life.