Experiences of services for Fibromyalgia patients in Trafford

About this report

After hearing that services for people with Fibromyalgia were not always meeting their needs, we set out to collect more people's experiences of care. Overall we heard from 738, the majority being from people who do not live in Trafford or Greater Manchester.

Key findings

• Trafford respondents felt positive about accessing GP services, but they were not always knowledgable about Fibromyalgia. 
• Lack of information about Fibromyalgia.
• Lack of pain management services. 
• Lack of clarity regarding treatment and services that are available. 
• Non-specialist hospital had a lack of knowledge about Fibromyalgia. 
• Hospital inpatient care was generally rated negatively. 

Recommendations 

• Implementing appointment reminders, where possible. This is to mitigate against memory problems involved with Fibromyalgia, which may otherwise cause difficulty with attending GP and specialist appointments.
• Patients to be made aware that they can access their medical records, including test results and letters from specialists. This is to help patients who may have memory difficulties and to reduce confusion over which services are being accessed and to allow patients to keep track of their treatment.
• Explore the possibility of offering longer GP appointments to those with Fibromyalgia. This is in order to allow those with cognitive difficulties or complex histories adequate time to explain reason for attendance and to reduce the common complaint of feeling ‘rushed’.
• Increase GPs and GP practices’ awareness of specialist services available that may be of use to Fibromyalgia patients, including pain management services, and those that Trafford CCG commission from outside of Trafford.
• Flexibility in appointment time should be offered to those with Fibromyalgia. This is because Fibromyalgia often causes difficulties which vary with time of day, such as particular stiffness in the morning or increase cognitive difficulties in the afternoon.
• To ensure that hospital facilities are suitable for Fibromyalgia patients, particularly in rheumatology, neurology, pain management and phlebotomy departments. This should include providing chairs with back support and wheelchair availability between departments.
• Mandatory education of GP and hospital staff regarding Fibromyalgia, including symptoms and impact upon quality of life.
• Investigation into the feasibility of adjusting inpatient facilities to take Fibromyalgia into consideration when treating other illnesses. This should include the possibility of low-noise and light areas for those with sensory sensitivities and those who may require longer periods of sleep.
• Update CMFT trust’s website and ensure it is kept up to date: currently, rheumatology clinic times at Trafford General Hospital and Altrincham Hospital are inaccurate.