UK healthcare services for people with fibromyalgia: results from two web-based national surveys (the PACFiND study), 2022, Wilson et al

Abstract
Background

The UK’s “Getting It Right First Time” programme recommends that management of people with fibromyalgia should centre on primary care. However, it remains unclear as to how best to organise health systems to deliver services to optimise patient outcomes.

Aim
To profile UK healthcare services for people with fibromyalgia: provision of National Health Services (NHS) and use of non-NHS services by people with fibromyalgia.

Methods
Two online open surveys (A and B) incorporating questions about diagnosis, treatment and management of fibromyalgia and gaps in healthcare services were conducted between 11th September 2019 and 3rd February 2020. These were targeted to NHS healthcare professionals consulting with people with fibromyalgia (Survey A) and people ≥16 years diagnosed with fibromyalgia using non-NHS services to manage their condition (Survey B). Descriptive statistics were used to report quantitative data. Thematic analysis was undertaken for qualitative data.

Results
Survey A received 1701 responses from NHS healthcare professionals across the UK. Survey B received 549 responses from people with fibromyalgia. The results show that NHS services for people with fibromyalgia are highly disparate, with few professionals reporting care pathways in their localities. Diagnosing fibromyalgia is variable among NHS healthcare professionals and education and pharmacotherapy are mainstays of NHS treatment and management. The greatest perceived unmet need in healthcare for people with fibromyalgia is a lack of available services. From the pooled qualitative data, three themes were developed: ‘a troublesome label’, ‘a heavy burden’ and ‘a low priority’. Through the concept of candidacy, these themes provide insight into limited access to healthcare for people with fibromyalgia in the UK.

Conclusion
This study highlights problems across the NHS in service provision and access for people with fibromyalgia, including several issues less commonly discussed; potential bias towards people with self-diagnosed fibromyalgia, challenges facing general practitioners seeking involvement of secondary care services for people with fibromyalgia, and a lack of mental health and multidisciplinary holistic services to support those affected. The need for new models of primary and community care that offer timely diagnosis, interventions to support self-management with access to specialist services if needed, is paramount.

Open access, https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-022-08324-4

 

Who knew discriminating against some diseases was so complicated? That when you categorically refuse to provide services, the needs those services should exist to handle aren't met. The whining about self-diagnoses when most healthcare professionals refuse to see those patients is absurd given its complete lack of self-awareness.

One thing that may not be clear: this is a survey of healthcare professionals*, not patients. Hence why the focus on "holistic" and mental health services. Even though that's what there is right, it's the lack of actual medical care that is the problem, which leaves the usual default of "people who understand nothing of this issue will teach you all about it so you can self-manage".

* There is mention of a survey B answered by patients but I can't find anything about it other than being mentioned. I couldn't find what those answers are. Oh OK I found a few: they are in the comments, just hard to tell but they're mixed in with the other comments. There are only a handful of comments from patients and the raw answers aren't available.

The comments are mostly the usual same we are used to. They basically tell the whole story, but somehow it's not possible in healthcare to connect the "we are discriminating against this" and "those needs aren't met" dots. Some are very clear about how this is systemic discrimination done entirely on purpose and as instructed:

Even the professionals' comments are all over the place, contradicting each other, showing where the dysfunction is, but there is simply no ability to assign responsibility to anyone, since no one is actually responsible for it:

It's hard to deal with comments like the one above, after decades of obsessing over doing exactly that. Biopsychosocial is the model that both has been used effectively for decades while also needing to be tried for the very first time all over again.

This is a lot like finding that a community that has been denied any basic services like roads and electricity is oddly backwards and economically stunted but being unable to actually attribute the blame properly: that refusing to build services is what leads to services not existing. The community, despite asking and lobbying for decades, is somehow blamed for other people's refusals.

Pure incompetence and dysfunction, in a nutshell.

 

I have a hard time with these practitioners and their problems. They seem to be lacking some important traits. Like patience, compassion, dedication. If I were their supervisor in clinical rotation, I would have suggested an alternative career, such as auto mechanics.

Jeez. I got diagnosed with "probable FM" within six months after some painful areas emerged and persisted. Though there was scant literature at the time (1996), the rheumatologist said "heat, heat, heat," and that was, by far, the best remedy (outside being completely anesthetized) for the pain.

I soon became more cranky as my life turned upside down by sensory overload, fatigue, worsening pain. Psychology is only helpful when it tells you the truth:
the illness stinks, take a huge amount of adaptation, and a long time to do so.
And still you will have it...every day. For the rest of your life.

Those things a friend who has fibro can tell you. You don't need a professional who doesn't know, hasn't experienced it.

 

And are basically hiding the answers. Most of what's discussed, especially the focus in the abstract on "holistic" and mental health services, is from the professionals. There are a handful of quotes from patients and that's it, the rest is basically all about the professionals and how no one is responsible for this or knows what to do, except those who want to do the wrong thing.

Supply-side medicine, entirely based on the perception of the service providers. The more I look at it and the more I see similarities with state-managed economic systems, where the highest authorities decide what people need and how much to produce of those basic things. And about just as accountable, maybe even less. Completely detached from reality.

 

And they are going to the same people for the solutions and diagnosis of issues. There must be some wise riddle for 'this' somewhere in history that someone who has that type of mind or interest can pick out - for a start you sort of need to know what jobs people currently do and want to in future in order to contextualise their replies. What would a physio know about psychology anyway if they suggest it, maybe OT - but people rarely fully know other people's jobs, and it would take a brave person to see that they were superfluous to their own role.

I'm doubtful to think a business would either address a problem diagnosis in this way alone, nor have potentially so many people allowed to shape jobs to what they want to do from my experience.

This sort of thing (service provider vs patient doing the same survey) would only be done by someone in a consulting role in order to show the problem by noting how starkly different the answers are in business. Like a MR and MRS intro before a process review session. And there would certainly not be a 'and if different the service provider must be right and you're just not selling it right'

Which is smart because how can you put together a strategy/fix an issue without knowing where you are and where you want to be, and the only thing worse than known unknowns is filling them with the very opposite (thinking you know when you don't).

Then a total strip back to the basics of 'what is it that we are in the business of' and what does that mean are the fundamental things we need to do, measure and planning up from there. You'd probably use focussed groups led by a convenor who was getting everyone to 'solve' the task. You wouldn't 'free ask' workers 'what do you want to change' because or 'any ideas' and just go with that. Unless your KPI was to just run 'a service' (of any kind) as long as it offers the right amount of appointments for funding requirements and all scrabble round and work out what you could chuck into those - unless you were playing politics/told to 'just do something' like that by the boss.

I get that it is quite different re NHS for various reasons, e.g. staffing in NHS - is this coming from a starting point of 'keeping staff in a job they want to do' (shortages, is there less redeployment in NHS etc?) and 'what can we offer with these people' type thing? I'm curious.