The Lothian Clinic: A Cautionary Tale from Tymes Trust

Summary: This document outlines the timeline and challenges surrounding the establishment of the Lothian ME-CFS pilot service, highlighting key events and concerns. Key points include:

• Initial Funding and Planning:
  • In January 2011, NHS Lothian allocated a recurring investment of £25,000 for ME-CFS work. Meetings with stakeholders, including Action for ME, informed the development of the pilot service.
  • By March 2012, a proposal was submitted to the Scottish Government seeking additional funding of £70,000 annually for two years to support the service.
• Service Launch:
  • The pilot service, hosted at Astley Ainslie Hospital, began accepting patients in November 2012. It was staffed by specialist physiotherapists and applied psychologists, offering a self-management program based on cognitive behavioral strategies, including pacing and graded activity.
• Advocacy and Controversy:
  • The Cross Party Group (CPG) on ME played a parallel role, raising awareness and advocating for ME as a distinct neurological condition. However, the group faced internal conflicts, including disagreements over the focus of the service and its alignment with patient needs.
  • Concerns were raised about the influence of fatigue clinic models and the lack of ME-expert clinicians, leading to disillusionment among patient groups.
• Key Events:
  • A GP training event in May 2012 launched the Scottish Good Practice Statement on ME-CFS and the Lothian pathway.
  • The service’s approach, influenced by the PACE trial findings, sparked criticism for its focus on psychological and physiotherapy-based interventions.
• Outcome:
  • The document serves as a cautionary tale, urging patient groups to carefully consider their involvement in service development to ensure alignment with the needs of ME patients.

The timeline underscores the complexities of establishing ME services and the importance of advocacy for patient-centered care.