Access to services in Gloucestershire for patients with Fibromyalgia and ME

Healthwatch Gloucestershire undertook research to determine if access to services and information for patients with fibromyalgia/ME had improved compared to 2011 and if the commissioners and providers had responded practically to the recommendations of the Link Gloucestershire 2011 report.

The work showed that there had been developments: Gloucestershire Hospitals NHS Foundation Trust (GHNHSFT) The GHNHSFT website has a page dedicated to fibromyalgia. GHNHSFT does not specifically deal with Chronic Fatigue Syndrome but had a regional service based at Frenchay Hospital and a small satellite service run in Gloucestershire Royal Hospital.

The 2gether Trust has piloted a 5 week course in Cheltenham, under the ‘Let’s Talk’ programme, ‘Managing Fibromyalgia and Chronic Fatigue’ with a view to extending the course to the rest of Gloucestershire.

There was also information on physiotherapy, social prescribing, complementary therapies.

Based on the findings of the survey, the focus group discussions and comments gathered through community engagement, it was concluded that some services have improved since the 2011 report, though many of the longer term patients are not satisfied with the service they are receiving. 

The majority of fibromyalgia/ME sufferers involved in this piece of work were diagnosed prior to 2011. The evidence suggests that patients who were more recently diagnosed had more positive experiences with their GPs and were more likely to be referred to specialists. There are inconsistencies in GP service provision around fibromyalgia and ME. This is particularly relevant in their role as gatekeepers to consultants and treatments. In particular the following issues were raised: 

There is a continuing perception by some fibromyalgia patients that GPs do not believe their condition is a physical illness 

Once diagnosed, and back under GP care, any consultation about a new symptom could be dismissed as a manifestation of fibromyalgia and ME. Other conditions, eg hypothyroidism, could be missed as the doctor is often reluctant to order tests or refer back to a consultant There was no evidence to suggest that GPs are aware of, or refer to, the care pathways for fibromyalgia and ME in Map of Medicine when treating patients. 3

The number of specialist referrals relating to fibromyalgia and ME has increased since the publication of the Gloucestershire LINk report in June 2011 

The Rheumatology Service at GHNHSFT experienced a 25% increase in referrals for all rheumatological conditions between 2011/12 and 2013/14 (not specifically related to fibromyalgia and ME)

 As a result of the increase in referrals to the Rheumatology Service there are long waiting times for appointments 

A one year, full service review is underway in the Rheumatology Department as well as recruitment of an additional Consultant 

The level of satisfaction from specialist referrals is high 

There are concerns that most specialist services are out-of-county 

Fibromyalgia/ME sufferers are not made aware of specialists in the county, both NHS and private

A consistent theme raised by the focus group was the need for a local multi-disciplinary clinic for patients with fibromyalgia/ME to provide periodic monitoring, signposting and information for patients and carer