It's not in my head: Patient Experience of Fibromyalgia

Healthwatch Leicestershire were made aware that services for local people with Fibromyalgia are not meeting their needs. They undertook a survey to which they received 950 responses of which 247 respondents were residing in Leicestershire.

wed all the responses we found that Fibromyalgia impacts on individual’s quality of life and limits their chances for education, employment and social life. Fibromyalgia also impacts on the individual’s ability to perform routine chores and look after personal care needs such as eating, bathing and dressing.

The length of time taken for a diagnosis contributes to their isolation and frustrations. Despite waiting a long time for a diagnosis, there were contradictory views on individual experiences with their GP. When broken down by Clinical Commissioning Group (CCG) areas across Leicester, Leicestershire and Rutland (LLR) and the UK, findings were very similar. Over a quarter of individuals across all areas including the UK reported that their GP was neither knowledgeable nor supportive.

The majority of respondents had not experienced misdiagnosis. It was concerning however that over half of respondents from LLR and the UK were not offered information by the NHS on living with Fibromyalgia.

Generally, respondents visited their GP monthly, bi-monthly, or quarterly regarding their Fibromyalgia. It is worth noting however, that nearly a quarter of LLR respondents and almost a fifth of UK respondents stated that they did not see their GP regarding their Fibromyalgia, this is because they feel their GP is not supportive or knowledgeable of their condition.

Whilst the findings regarding GP services seemed to be positive, experience of secondary services was less favorable. The majority of individuals from LLR and the UK reported that non-specialist hospital staff do not have much knowledge of or understand Fibromyalgia. There were a number of qualitative comments from individuals across LLR and the UK stating that, doctors and medical staff in hospitals do not see Fibromyalgia as a “real thing” and their symptoms are dismissed. There is a clear lack of understanding of Fibromyalgia both in primary and secondary health services and this may prevent individuals from reaching out and accessing services when they are in need of help. Individuals in LLR and the UK would like to see local specialist clinics and services for Fibromyalgia which are easy to access as well as more awareness of the condition to the public and health care professionals along with information on support groups, exercises and nutrition which will allow them to better cope with Fibromyalgia.