Pulse Check report: Chronic Fatigue Syndrome (ME) and Fibromyalgia services

In this report Healthwatch Kingston Upon Thames evaluate Chronic Fatigue Syndrome (ME) and Fibromyalgia services and support available in Kingston. They used a survey, co-designed with the Richmond and Kingston ME Group, to collect feedback from 39 participants (29 online survey responses and 10 from community events).

The key issues identified were:

• Long travel times to specialist services.
• Significant mental health impacts, including anxiety and depression.
• 67% of respondents rely on family and friends for support during flare-ups.

Recommendations

For GP's and health care professionals:

• Inform patients about diagnosis timelines, symptoms, treatment options, and referral processes.
• Refer patients to specialists for long-term care as per NICE guidelines.
• Offer mental health support immediately post-diagnosis.

For South West London ICB

• Collaborate with secondary care providers for nutritional advice.
• Provide accessible information through Connected Kingston and other channels.
• Consider travel support for those needing to access distant specialist services.
• Implement ME/CFS and fibromyalgia awareness training for staff.

For Kingston council:

• Factor in the intermittent nature of ME/CFS and fibromyalgia in social care assessments and 'Blue Badge' applications.
• Support peer groups for those awaiting or after diagnosis.