Table 4 Themes, subthemes and example comments

Diagnosis: A troublesome label

Diagnostic uncertainty and delay

“The patients that I see generally have physical and psychiatric co morbidity. They usually have a diagnosis of fibromyalgia amongst a number of other somatoform disorders and/or mood disorder and/or chronic syndrome[s], and it is unclear whether fibromyalgia is actually a separate diagnosis.” (A-295; Psychiatrist, Greater London)

“The difficulty is confidently making the diagnosis in primary care - 1. you may miss a life-threatening illness eg Cancer …, Polymyalgia 2. if the diagnosis is technically correct some [patients] seem to spend the rest of their lives validating it and forgetting to live.” (A-1288; GP, Wales)

“I think all clinicians need a better understanding of FMS [Fibromyalgia Syndrome] and associated functional somatic disorders to make [a] confident diagnosis of FMS like we do with IBS [Irritable Bowel Syndrome] and stop referring them [people with fibromyalgia] round in circles from one speciality to the next - this would be better for patients and save [the] NHS a fortune.” (A-52; GP, West Midlands)

“[…] There seems to be a lack of diagnostic confidence. The long wait for a rheumatology appointment and uncertainty during that time engenders significant anxiety that does not help patients.” (A-142; Rheumatologist, Scotland)

“[A] lack of skill or confidence in making a diagnosis in primary care means people are not given early advice or information about how to manage their condition.” (A-669; Psychologist, South West England)

The indelible nature of fibromyalgia

“‘Fibro’ has now become a common label for a whole cohort of young people presenting often with a self-diagnosis and a negative mindset about their future capabilities and sadly a negative engagement with non-drug options.” (A-1669; GP, South East England)

“Dr Google also causes self-diagnosis which unfortunately makes it challenging as it only needs one healthcare professional to make an innocent comment of agreement, and this is then in stone.” (A-1392; Physiotherapist, Wales)

“[A] lack of engagement by patients; some tend to ‘wallow’ in diagnosis and [it is] difficult to change their mindset.” (A-1139; GP, Scotland)

“Once a diagnosis of fibromyalgia is given, other professionals ‘blame’ all the patient’s ills on this diagnosis and stop being open minded and vigilant. I think fibromyalgia should be used selectively and carefully, so that it enhances a patient’s experience [….].” (A-986; Physiotherapist, West Midlands)

“The elephant in the room is where a diagnosis is linked to staying on benefits which means this a psychosocial illness, which I would call a posture rather than an illness. Developing pathways of care may embed an illness model which does not really help patients long term.” (A-689; GP, South East England)

“Fibromyalgia is a ‘diagnostic dustbin’ that people are put in, or put themselves in. Because it is a chronic illness with no treatment … I avoid it. […] How can anyone ‘prove’ this diagnosis/label, and why do so? It is often used to ‘dump’ patients that doctors can’t be bothered to try to assess any more.” (A-616; GP, South East England)

An empty diagnosis

“Poor education on [the] condition at the time of diagnosis.” (A-1563; Physiotherapist, Greater London)

“On diagnosis of my fibromyalgia, I received no advice or help. I was just told that that is what I had!” (B-363, England)

“We have limited capacity to see fibromyalgia patients when we are already stretched seeing [our] inflammatory cohort. This should be a diagnosis that can be made in the community […]. We are unable to offer more than a diagnosis confirmation [and] pointers to self-management at rheum[atology] outpatients. We make some management suggestions but do not offer ongoing care as no staffing.” (A-142; Rheumatologist, Scotland)

Treatment and management: A heavy burden

No route map

“A lot of my patients have inflammatory arthritis e.g. Rheumatoid Arthritis. I find that many GPs refuse to engage with patients who are under our care. There is a lack of a local pathway that gives all providers responsibility.” (A-1450; Nurse in rheumatology, Greater London)

“[The] CCG have not streamlined management of persistent pain effectively; two pain management pathways [are] present within [the] local area; one that is very effective, one that isn’t. Patients are unfortunately the ones who don’t benefit from this.” (A-386; Physiotherapist, South East England)

“No consistent package across Wales - some health boards rheumatologists refuse to see patients with a primary diagnosis of fibromyalgia, others do see but little resource in house, outsourcing and no central coordination within the health care team mean[s] that patient[s] gets lost in a myriad of suggestions as opposed to empowerment and oversight and then patients seek multiple opinions as [they are] unsure what to expect.” (A-107; Rheumatologist, Wales)

“Effective management of fibromyalgia often requires services working collaboratively e.g. rheumatology, pain clinic, physiotherapy, psychology and mental health services. These services are often not under one roof and often are in separate trusts which hinders collaborative working.” (A-309; Psychologist, West Midlands)

“The biggest issue for the care given to this patient group, I find, is that their condition is managed in a ‘disjointed’ ‘symptom by symptom’ approach, which increases their waiting times and [reduces] their quality of life in the meantime.” (A- 264, Dietitian, East Midlands)

An unwelcome condition

“No one discipline wants to take the ownership of care for fibromyalgia patients - they are viewed as a burden.” (A-1480; Physiotherapist, North West England)

“We have recently been advised that our community MSK service and rheumatology at [Name] hospital do not accept referrals for patient[s] with fibromyalgia as their primary diagnosis, even …to screen them for [the] pain clinic. They are rejected for [the] GP to manage.” (A-293; Physiotherapist, East of England)

“No interest from secondary care specialist so where patients are not improving or have unusual symptoms, we struggle to obtain support/secondary care opinion.” (A-1130; GP, Scotland)

“I’ve been told by doctors [that] physiotherapy would help me. Then told …they [the doctors] can’t refer me, but they would if I had a different diagnosis.” (B-542, Scotland)

“I find its always handed over with an ‘eye roll ‘.” (A-1228; Nurse, Scotland)

“We see patients in rheumatology where the needs of the patients would be best met in a service with dedicated psychology. The NHS is still separating mental and physical health where fibromyalgia needs a combined approach. Our hospital won’t pay for a psychologist so we have to refer on to [the] pain team which produces a disjointed pathway. Pain team only accept referrals for patients who have psychological issues related to pain, whereas what we see with fibromyalgia patients, are people who have long standing mental health issues that often result or contribute to fibro symptoms. So [the] pain team can reject the referrals, which leaves us with almost no options for specific mental health support.” (A-1069; Occupational Therapist, Yorkshire and the Humber)

Unhelpful pharma and the cost of keeping going

“Services like specialist care or pain clinic[s] seem to just be giving high dose combination addictive non-evidence based long term analgesia, which is not appropriate.” (A-574; GP, Yorkshire and the Humber)

“I work for a community pain service ...GP[s] tend to overuse medication even if it is providing limited benefit.” (A-1496, Nurse in pain medicine, South East England)

“[I am] fortunate to have some private healthcare insurance that was taken out many years before diagnosis [of fibromyalgia]. [I] get some help towards [the] expense of acupuncture but [it is] still very expensive …to prevent being unable to function / work some hours.” (B-26, England).

Service gaps: A low priority

A barren landscape

“My consultant asked [my] GP to refer me to [a] ‘specialist fibromyalgia clinic’. My GP apologised and [said] there ‘was no such clinic’.” (B-368, England)

“The numbers of FM (fibromyalgia) pts [patients] have quadrupled over the last 4 years. We only have the capacity to run 1 group a week. Also there is very little in the way of community services - this automatically medicalises the treatment once the group is in the hospital.” (A-279; Occupational Therapist, South East England)

“Not all patients get access to a holistic pain management programme, and sometimes just get offered medication in pain clinics - I think ALL patients should be supported holistically, and repeatedly if they don’t engage the first time round.” (sic) (A-813; GP, Yorkshire and the Humber)

“Funding constraints approx. a year ago led to fibromyalgia generally being dealt with by GPs (no further secondary care nor multi-component programmes offered).” (A-1698 Yoga Therapy Teacher, South West England)

“We have very limited options for referral - including exercise referral and the EPP [Expert Patient Programme] which is run through the voluntary sector. There is a huge need for additional patient education and support in the community, to enable patients to seek help in self-management.” (A-1364; GP, Wales)

Nothing long term

“Due to limited resources, there is little scope for long term follow up/check-ups. Other long-term conditions are more likely to have an annual review. Patients with FMS attending our service are given appropriate information and signposted to community resources when they are discharged but may struggle to implement/access due to multifactorial reasons.” (A-226; Physiotherapist, Scotland)

“Services aren’t able to be responsive to acute flare ups and have limited capacity to provide ongoing support whilst individuals develop their self-management skills.” (A-208; Physiotherapist, South East England)

“NHS care is great for short term conditions, but it has a long way to go with managing long term conditions, especially pain. Fibro patients often need things like long term physiotherapy and most clinics only provide 6 sessions which barely scratches the surface with such a complex disease.” (B-17, England)

[Un]knowledgeable professionals

“It appears many clinicians have a poor understanding of fibromyalgia. Sadly, it is not uncommon for patients with fibromyalgia to report to me that there are still professionals they encounter who believe their symptoms represent some sort of medically unexplained or ‘functional disorder’ and that their symptoms are somehow less valid than other, better understood disorders.” (A-391; Psychologist, Yorkshire and the Humber)

“[There is] little training provided to Orthoptists who often see patients with fibromyalgia related eye symptoms.” (A-402; Orthoptist, South West England)

“The unmet need is an educational one of professionals. […] This includes GPs.” (A-680; GP, North East England)

“This survey has made me reflect, am I doing enough for the people I see in clinic? I don’t know what services are available in my area. I don’t talk to them [people with fibromyalgia] about holistic things such as sleep hygiene, pain management, pacing.” (A-1672; Podiatrist, Yorkshire and the Humber)