Myalgic Encephalomyelitis/Chronic Fatigue Syndrome NICE guideline: stakeholder review

5. Moving forward

5.1 As part of the discussions, stakeholders were asked for their views on the ways in which the sectors, patients' and clinical groups could move forward the care of people with ME/CFS. Their responses built on the earlier conversations about the barriers to implementation of the NICE guideline and priority actions. These are described in this final chapter. A summary of the key discussion findings is also presented, and the chapter ends with recommendations.

Developing services

5.2 Although all stakeholder types recognised the significance of the barriers that needed to be addressed to implement the NICE guideline in Scotland and develop appropriate and relevant services, when asked to consider what a service could look like, there were plenty of suggestions as to who should be part of a service and how it should operate.

Specialist community-based service

5.3 The majority of stakeholders felt that there was a need for specialist services. Their proposals centred on a design that had a community-based focus with a ME/CFS practitioner at the centre who concentrated on supporting the person living with ME/CFS through the management of a care and treatment plan. That plan was then delivered by a network of different specialisms which could involve at any time: cardiology, neurology, gastroenterology, dietetics, pain management, immunology, pharmacology, occupational therapy, or physiotherapy.

5.4 Those that proposed this approach stressed the importance of connections to, "avoid the silos of ologies" between the different teams ensuring that they shared information and understood the breadth and depth of the condition and the multiple impacts it could have. In partnership with this specialist service, the majority of third sector stakeholders wanted to provide wrap around care - for instance the clinician provides medical advice and support for treatment, third sector looks at isolation, social care, benefits etc., but in tandem so care is joined up.

Specialist national or regional centres

5.5 Whilst the specialist local service was a popular suggestion with all stakeholder types, a minority of the clinicians also identified the need for one national or several regional centres of excellence. These would carry out research and be staffed by highly trained specialist clinicians supported by other team members - occupational therapists, physiotherapists, and nurses. This centre model was compared to rehabilitation units already in existence, e.g. for brain injuries, and their role would be to provide advice and diagnostic support to local community services through virtual clinics and lead on developing and sharing good practice, trialling new approaches and encouraging consistent use of assessment tools and management approaches.

Join existing programmes to pilot specialist service

5.6 One clinician suggested using existing approaches to design and deliver services for other conditions. They identified the Chronic Pain Speciality Network as an example. This has worked to improve access to services and improve health outcomes for those who experience chronic pain and it was developed as part of the Modernising Patient Pathways Programme.

Build on existing mainstream services

5.7 A few clinicians considered a specialist clinic approach as resource intensive and felt that the solution should be found within the existing mainstream services.

5.8 One approach was to look at the health and social care partnership (HSCP) or NHS board infrastructure and consider how existing services could be extended or developed, building on the strengths of their established systems and processes. This model also builds staff expertise ensuring that the care and treatment is the responsibility of all professionals and therefore they all need to be appropriately educated.

5.9 The other suggestion was to introduce a ME/CFS co-ordinator - a named person who had an interest in ME/CFS and dedicated time to co-ordinate and navigate through the care and specialist support that was needed by an individual at different times. In this model that person could be from a variety of backgrounds - social care, the third sector or primary care and the individual with ME/CFS and their GP would discuss and identify who that co-ordinator would be.

Applying the learning from the pandemic

5.10 Regardless of how services are developed, stakeholders were unanimous about the huge leap in digital enablement resulting from the pandemic and that this learning had to inform service delivery. Digital/remote appointments provide a real opportunity for ME/CFS care. Pursuing a blended model would reduce or completely end the need to travel and the necessary energy budget needed to do so.

5.11 The majority of stakeholders also felt that the attention to, and high profile of, long COVID had helped to acknowledge that "post viral illness is a thing". As the infrastructure and service provision develops to support people with long COVID, then the potential for synergies should be considered where management of the condition has similarities between ME/CFS.

Involvement and recognition of lived experience

5.12 Stakeholders described the disbelief that people with ME/CFS often face when they interact with health and social care services and the huge impact this has on them and what services they go on to access. These stakeholders strongly felt that, if real progress is to be made, future services and treatment for ME/CFS needs to be patient-led. This will require involvement of people with ME/CFS in the design of services and greater recognition of that lived experience so that their voices are heard. To achieve this patient involvement, work would be needed to build the relationship and develop the trust between people with ME/CFS and clinicians.

Partnership working with the third sector and clinicians

5.13 Stakeholders of all types recognised the potential benefits of the third sector and clinicians working together to deliver and manage the care of people with ME/CFS. They considered the third sector's knowledge and lived experience as an ideal complement to clinical recommendations and treatment plans. They could also provide clinicians with a greater understanding of the impact of the condition on people's lives.

5.14 Again, relationship-building was needed to move forward this partnership-working. Stakeholders felt that this collaboration could be encouraged and facilitated at government level to break down barriers and the perception held by some third sector organisations that "they were not held in high enough account to merit co-operation".

Education of future and current clinicians

5.15 Stakeholders from the ME/CFS community described some of the experiences of accessing the health and social care services. They wanted people with ME/CFS to be able to attend an appointment with a clinician and "be listened to and believed".

5.16 Stakeholders felt that an education programme for clinicians, starting with GPs, had to form part of the next stage for moving forward. This programme would raise awareness and understanding so that ME/CFS was believed and understood. Once the basic messages were in place the continued professional development of clinicians would provide them with knowledge of effective management so that they can deliver responsive care, adapting as the severity of ME/CFS changes.

5.17 One stakeholder explained "it is the nature of the GP / clinician to want to 'get to the bottom of it' - but you have to draw the line somewhere and stop testing for everything" (Clinician). A robust education programme would provide clinicians with the confidence to diagnose ME/CFS and identify an appropriate management and care plan.

5.18 An issue for people with ME/CFS and third sector organisations was how, and the extent to which, ME/CFS was taught in medical schools. They called for the better education of medical students. One stakeholder gave an example of St Andrew's University, in partnership with Dundee University, having trialled a project where medical students met patients and discussed care and management. A member of the panel had ME so that cohort of medical students would have a much better awareness and recognition of ME/CFS. Changes to what is currently taught in medical schools would ensure that the next generation of clinicians understand about ME/CFS and how to provide care and support.

Leadership from the Scottish Government

5.19 The majority of stakeholders identified a lack of priority for supporting people with ME/CFS and delivering appropriate services. They felt that ME/CFS had been underserved for a long time and called on the Scottish Government to set out a more ambitious agenda that would improve the status quo.

5.20 There were many requests as to how this should be done and these centred on:

• Recognising the condition and challenging the disbelief and scepticism that surrounds it. This needs to include an end to providing individuals with views that are not in line with the NICE guideline the opportunities to influence and hinder action;
• Acknowledging the resistance from some Royal Colleges, which is impacting on the response from clinicians, and recognising the commitment from the Royal Colleges who do support the NICE guideline;
• Dedicating resources to invest in services that could pilot new ways of working;
• Placing clear expectations on NHS boards that people with ME/CFS need to be able to access appropriate services and invite proposals as to how they can deliver this in their board area; and
• Encouraging more research, especially around biomarkers, so that there is a better understanding about the condition.

Summary and recommendations

5.21 There was plenty within the NICE guideline that was welcomed by all stakeholders. In particular, the recognition that it was a medical condition, significant changes in the recommended practice for GET and CBT, and the specific consideration given to severe ME/CFS and children and young people.

5.22 It was felt that applying the guidance in Scotland could be achieved by updating the SGPS. However, on a practical level, the lack of existing services made it difficult for most stakeholders to identify a platform to move things forward. Stakeholders felt that change generally started with education, awareness-raising, political buy-in and ensuring people with ME/CFS are heard.

5.23 The education of clinicians in primary and secondary care and within medical schools was seen as key to unlocking the knowledge, understanding and confidence to support people with ME/CFS in both current and future generations of clinicians. The role of the GP in diagnosis and then supporting care and management of the condition was considered pivotal.

5.24 There was recognition of the lack of services, with a few exceptions like the ME/CFS nurse in NHS Fife, and the need to develop referral pathways to access specialist provision. Stakeholders had differing views about the structure of specialist services. The majority of stakeholders who advocated for a specialist service saw a ME/CFS practitioner with links into multiple specialist teams as an approach that could be replicated across different areas. A few others considered centres of excellence as another layer to that specialist provision, and a minority of stakeholders thought that existing services could be adapted to meet the needs of people with ME/CFS.

5.25 There was also agreement amongst stakeholders that the learning from the pandemic should inform the shape of any service and the potential synergies with long COVID should be explored in that design. The valuable contribution of the third sector should be harnessed to enhance the clinical response to supporting and managing the care of people with ME/CFS and this would require facilitation to build those collaborations. Any service development should also be informed by the voice of people with ME/CFS.

Recommendations

5.26 To implement the NICE guideline in Scotland, several recommendations were identified and presented below.

• The Scottish Good Practice Statement is updated to reflect the changes within the guideline.
• There is a visible commitment to supporting the key changes within the guideline, to help end the scepticism and disbelief.
• The publication of the revised SGPS is accompanied with promotional activities and awareness raising.
• Consideration is given to the most effective approaches to improve GP knowledge, confidence and understanding of ME/CFS through an appropriate education programme.
• Pilot services are funded in a selection of NHS boards to test the development of specialist services with patient involvement and third sector collaboration embedded in the design.
• The option of including ME/CFS as a specialist network within the Modernising Patient Pathway Programme is explored.
• More research into ME/CFS is actively encouraged within the academic sector.