Fibromyalgia: Experiences of Treatments Study (Fibro EXPERTS)
Research type
Research Study
Full title
What are people with fibromyalgia’s experiences of psychological treatments for their condition?
IRAS ID
257808
Contact name
Alexander J Smith
Contact email
Sponsor organisation
University of Birmingham
Duration of Study in the UK
1 years, 0 months, 2 days
Research summary
Research Summary
This research project aims to explore the lived experiences of people with a diagnosis of fibromyalgia, looking particularly at positive and negative experiences of psychological treatment. Fibromyalgia is a physical condition characterised by pain which occurs daily over prolonged periods of time. The reasons that fibromyalgia develops are not well understood and the condition was previously known to doctors as being a ‘medically unexplained symptom’. What is known is that fibromyalgia can be disabling and contains strong links to both physical and mental health.People with fibromyalgia often experience difficult journeys through NHS services before receiving the support they need. It can often take years for patients to receive a diagnosis as doctors are often wary of diagnosing fibromyalgia before eliminating all other possibilities. It is common for a patient with fibromyalgia to be assessed by several doctors of different specialties before receiving a final diagnosis.
When patients are diagnosed they are offered support within Pain Management Clinics by a team of specialists. These specialties include anaesthesiology, neurology, clinical psychology/psychiatry, nursing and physiotherapy. One treatment patients are offered are pain management groups with a psychological focus, aiming to help them manage their pain symptoms – including anxiety and depression.
This project with ask participants with fibromyalgia, attending pain management groups, about their experiences in the NHS focusing on the psychological aspects of their treatment. Each participant will be interviewed about their experiences and the interview recorded and transcribed. All interview transcripts will then be thoroughly read in order to identify important and recurring themes. It is hoped that any themes identified will help to support caregivers in the NHS to provide more effective treatment to this patient group.
Summary of Results
In a study carried out by researchers at the University of Birmingham, fibromyalgia patients have described long waiting times for psychotherapy, which worsened their symptoms, leaving them anxious and depressed. Some participants reported waiting over 18 months to receive mental health support, where others received ineffective brief therapy lasting four weeks or less. Participants were particularly enthusiastic about the opportunity to meet and learn from other people with the same condition.Fibromyalgia is a long-term health condition characterised by chronic overall body pain, fatigue, and insomnia. People with fibromyalgia report both psychical and mental symptoms due to the debilitating nature of the disease. Physical symptoms are treated in specialist pain services with medication and physiotherapy. However, the mental health of people with fibromyalgia is supported only through group pain management programmes based on cognitive behavioural therapy (CBT).
The research, undertaken by a doctoral student at the University of Birmingham, is aimed at improving the provision of mental health services for this under-served population. The lead researcher worked with a specialist pain management clinic and interviewed eight women with fibromyalgia to understand their views on the mental health treatment they had received to help with the condition. Participants had waited up to 18 months to access psychological treatment and were only referred after medication for their pain proved unsuccessful. Lead researcher Alexander Smith explained “People experiencing fibromyalgia have often spend years in the NHS looking for a diagnosis. This has a detrimental effect on their mental health with many developing depression”
Analysis of these interviews showed that there were recurring themes of ambivalence about psychological approaches, feeling understood and developing a new confidence in managing their symptoms. Whilst participants valued their psychological treatment, they also felt strongly that they were being told that their condition was ‘all in their head’. Fibromyalgia is commonly misinterpreted as a psychological condition and this is a real concern for those that living with the condition.
In 2014 The NHS ‘Five Years Forward’ White Paper extended the provision of the Improving Access to Psychological Therapies (IAPT) initiative to people with fibromyalgia, but the researchers argue that this service is not specialised enough.
“This basic level of mental health support has proven effective for people with long-term health conditions in the past but people with fibromyalgia have needs not covered by IAPT,” says Smith. “We found that what fibromyalgia patients particularly value is being able to meet other people who are living with the condition. This is something that would be completely lacking from the NHS’s proposed treatment strategy.”The results provide key information on the unique needs of people with fibromyalgia and provides an insight into the experiences of this underserved population. This research will support policy makers and commissioners to provide appropriate and acceptable psychological treatment for people with fibromyalgia. It will also allow mental health professionals to tailor their psychological treatment to get the best results for people with fibromyalgia.
Future research in this area could focus on the experiences of people with fibromyalgia receiving psychological treatment in mental health services. Alternative topics could include exploring how participants’ ambivalence about psychological therapy impacts on the psychotherapy they receive.
REC name
East Midlands - Leicester South Research Ethics Committee
REC reference
19/EM/0254
Date of REC Opinion
25 Sep 2019
REC opinion
Further Information Favourable Opinion