The Healthcare 4 ME (H4ME) team met with a representative from a Scottish Health Board in December to discuss the scope and delivery of a new service, with a strong focus on ensuring meaningful patient involvement in service design.
The Scottish Government has committed ring-fenced funding to develop services for ME/CFS and Long Covid. The service will be symptom-focused, fully aligned with NICE NG206, and delivered by a medically led multidisciplinary team. To ensure equitable access across a very large geographic area, the service will primarily operate via remote assessments, with potential outreach clinics. Initial coverage will focus on the Highland region, with possible future expansion.
Drawing on extensive patient and carer engagement work within the BOB ICB pilot region (Buckinghamshire, Oxfordshire, and West Berkshire), the H4ME team shared evidence-based insights into patient priorities and unmet needs.
- The need for validation, belief, and respect when accessing healthcare
- Early education around post-exertional malaise (PEM) to prevent deterioration
- Holistic support, including help with welfare benefits, social care, employment or education adjustments, and practical daily needs
- Access to symptom-specific referrals (e.g. POTS, MCAS), mobility aids, and management of comorbidities
- Lack of annual reviews and routine blood tests leaving many patients disconnected from healthcare
- The importance of remote options and home-based care for people with severe illness, which are currently limited
The discussion also acknowledged significant systemic challenges, including:
- Inconsistent diagnostic coding, with some Long Covid diagnoses reportedly disappearing from records
- Persistent stigma, medical bias, and lack of clinician education
- Wide variation in service quality across Scotland
- Limited access to social care support and reasonable adjustments
Encouragingly, all recommendations previously submitted by H4ME to BOB ICB appear achievable within this new service framework.
H4ME can support services in improving patient care through activities such as:
- Reviewing service specifications to ensure compliance with NG206 guidelines
- Connecting key contacts to facilitate knowledge exchange
- Assisting with Patient and Public Involvement (PPI) activities
We look forward to future opportunities for collaboration and continued improvement of services that are responsive to patient needs.