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

Andy

Senior Member (Voting rights)
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
 
The greatest perceived unmet need in healthcare for people with fibromyalgia is a lack of available services
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:
“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.”

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 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.”
“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.
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.
 
On a survey they only managed to get replies from 550 people with FM - they didn’t try very hard then.
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.
 
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.

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.
 
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.
Given what we have heard from the Royal College of Physicians lately, this seems to foreshadow a renewed effort of funding clinics run by psychologists and physios to scoop up all the Medically Unexplained Symptoms people, to stop them taking up the time of doctors for proper diseases.
 
Given what we have heard from the Royal College of Physicians lately, this seems to foreshadow a renewed effort of funding clinics run by psychologists and physios to scoop up all the Medically Unexplained Symptoms people, to stop them taking up the time of doctors for proper diseases.
There is definitely a massive overwhelming push I feel happening right now, which I guess has been planned for by those behind it and sponsoring it for a while ie us very coordinated to overwhelm us and dominate and ensure no choice or debate as it is forced onto us.

And there’s nothing benign or with good intentions about what’s being offered other than the marketing spiel. I find the double-speak of those trying to take away any last bits of support any people might have so sickeningly terrifying and steeped in selling ideology like misogyny. I feel crushed.

And planned explicitly and quietly whilst the objects (I think that’s how they see us patients) we’re spending the last four years being distracted and tricked into wasting their energy having ‘conversations’ on real things for the future with people who were just stringing us along whilst telling us, the harmed under what terms we had to behave and what we were allowed to say about how much harm their past impositions on us had done.

And supported by all sorts of others who won’t admit to themselves they are being misogynistic by doing so because it’s all sanitised and convenient for them and ‘they are women’ or ‘mean no harm’ and all that crap. But it feels like those supporters who are part of making this happen need to realise this isn’t ’just Five years’ whilst we get our rights instituted but that fallacy of it being temporary is what’s led to some of us having a lifetime of this horror imposed with a ratchet that has very seriously coercive upper levels if we don’t shut up comply and pretend to be happy playing our part in what they’ve decided is our demographics lot and entitlement as a life.

Even if it’s just our body not playing ball we are to be punished for it for showing up the bs doesn’t work that everyone must believe for the charade to keep going and keeping the masses happy. And that's the bit that has been proven over the last decade ie since 2015 with the Academy of Medicine report onwards and debates showing the harm publicly and not letting it being hidden. That this approach is pure politics overwriting science or medicine.

This is people who discovered power they weren't due and are convoluting to keep it over certain segments and has nothing to do with the medicine or science they are blagging as a title to give them any mouthpiece on things. They've decided who deserves this and come up with it not based on any scientific need but some yes sinister 'belief system' that has nothing to do with making decisions based on medical need or research potential. And very sinister in how crushingly and uncompromisingly it is being rolled out over those it is 'dealing with' in such a way to remove our voice completely finally. I find it very scary and obvious those who've accidentally ended up with this power are so keen not to let go of it they will spend most of their time in manifesto propaganda writing over the medicine they are supposed to be doing in a way that shouldn't involve any of their strange 'opinions' nevermind them driving it.

Cos those part of and driving this are just finding those harmed by what they do inconvenient and misbehaving for the outcome of their 'nudges' being shown up rather than us either disappearing and hidden when harmed (as intended I now assume, or at least they didn't care if it harmed people massively). It isn't about what would be the most fair or best economic outcome for society, including those with this illness but the decision of 'how we are to be dealt with' has overridden that, and the history of it all and the need to keep covering it up (that harm these people and ideologies has done and is still doing) seems to now be a runaway train above ever staunching the harm.

the need they sell for society to treat us in this horrific way they feel is greater than the benefits of reinstituting normal rights and a standard way forward. I mean I know the physio+psych motivation is money and industry (their post-hoc justification to themselves being delusion they aren't destroying people but 'helping cos there is nothing else' which couldn't be less true). I feel we've been deliberately destroyed by having any chance of us holding onto what we earned despite being ill and foot on neck being deliberately kicked out of our way simply in order that they can keep pointing the finger at us to tell society these women are mad see, look at what a mess their life is.

And none of those mainly women enlisted to do the implementing of next round (for appearances sake)have any intention of anything other than the most breathtaking awful to be on the receiving end of and wicked active taking apart of our lives and who we are piece by piece using the most harmful side of 'psychology' and propaganda and politics and power. the way it gets enacted leaves no space to live or exist in our own lives it is so intrusive and intimately appalling.

It feels scarily strategic and managed to disappear the come to Jesus moment for me/cfs.

I don’t know regarding fibro as I’m not aware of the landscape of patients and patient organisations for that. But I do know there were some seriously dodgy ideas coming from certain ‘industry side’ individuals selling mind-body stuff that seem to have gone from niche to that person locally to somehow that getting quietly built into parts of the system in ways I struggle to understand how a decent above board system allowed to happen (nevermind being so arms open to it).

But I have observed how patients get used as pawns when they are ill and tired by individuals who want to get them to say polite things do they don’t attack them or they manipulate them by making them feel special by giving them positions they don’t want to lose that are dependent on them saying the right thing to make the staff member happy.

And having watched it and the sheer level of coercion to those who are hardest hit have common sense and are not in the most privileged position patient wise where they can play at it for those who aren’t as well-supported (and the treatment not offered less important because they aren’t crushed financially and struggling to survive but think mindfulness is a nice add on) for so so long is just so organised and heart-breaking and sickening with the dystopian paternalism dressed up as pretend care and help whilst its intention is to crush and abandon under useless silos to control them

I just find this latest sudden turn to this level of overwhelming surge of imposition of power over people and removing their voices terrifying. Even more terrifying at the idea some of those doing it might genuinely believe their own intentions aren’t all bad and harmful because of post-hoc justifications that we aren’t deserving of anything real, still, and therefore ever in our lifetime, and so this ‘something’ is kind to mollify that stupid group who just need to be kept calmed as their life is toiled by these people who I think decided this is what we get because we are female.

I’m sorry to have to say this last line but the whiff from all of these recent, intolerant, domineering people who’ve suddenly re-entered (like Burton and Deary for me/cfs) is so strongly coming off these people it’s hard not to mention it as the factor that behind our backs is this whole problem of a very big swathe with power who just want the women to be shut up and won’t listen to them and certainly aren’t ever going to give them access to a real health system or research - ie it feels like being at the butt-end of the most foot on neck misogyny at the moment. That they are trying to disguise but if you’ve been on the receiving end of it for this long it’s undeniable the is what it is whilst I know they’ll play the card to outsiders of denying that because they’ve spent so long trying to carefully disguise the proof of it so they can claim faux offence when it’s said.

But these are people it feels who think that ill females just need to be treated as whiny pains to them and their colleagues who need to be dealt with in their modern disguised version of sending us off to asylums and that’s what will happen if we don’t take the ‘softened fir modern times version’ of coercing us into shutting up and taking the community-based coercive re-education and pretending to be ok with it. It really scarily does feel like someone has got away with re-implementing their dream of this ‘to be dealt with’ new non health service bucket for those they never wanted to check what they had before they wrote off their life and freedom and hope that anyone would give them a chance at health and having it basically managed.

The laugh being the ‘standard medical care’ idea as a control for all of us when we know that for this section of society that standard was never what other normal citizens get as the standard to which we were always prevented from access.

I feel like I was part of some sick experiment a number of decades ago where someone behind the scenes decided some of us in society should be experimented on as getting an arbitrary (nothing to do with us in as far as what society should think means deserving) red flag on my notes that said let’s see if removing this persons right to medicine and gaslighting them their entire life gets them what they sell. And the twist is that if my life which it has been was taken by this from being with every opportunity as I was very clever and had it all going for me to a miserable hell lying on my back with everyone being told to keep their foot on my neck whilst blaming me then it’s somehow a sign of ‘them winning’ too because they’ve somehow ‘proven’ not that their ideology destroys even in the most capable of people but that ‘see I told you this person was and could be made useless’.

This whole experiment is just a terrifying demonstration of what happens when a system doesn’t have the right basic checks and balances and is happy to be sold that those destroyed rather than those destroying are the pests and so those doing harm must be doing good for society (and in those who see life as zero-sum I’ve realised how worryingly many are happy to see others destroyed as they are a competitor and it means more for them and them not being destroyed must mean they are great etc).
 
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