FMA UK Statement on NICE guideline changes

[FMA_Reece]

FMA UK Statement on the NICE guidelines changes.

fmauk.org/Nice2021

[desquinn Partner Volunteer FMAUK Trustee]

Here it is as a post as well:

With the release of the NICE guideline on primary chronic pain we can start to examine the impact it may have on patients. It is our view that the fibromyalgia community will see this as a significant step back – both in their treatment options and their ‘legitimacy’ within the health service.

In devising the guideline, the committee was looking to find best practice; yet was selective in the evidence it considered in scope. We feel that patients, with their body of first-hand evidence, are being overlooked.

There are patients who can remain in employment, maintain a good quality of life, and increase their activity levels, thanks to treatment protocols that will now be unavailable to new patients. Some of these treatments help patients to such an extent that, in time, they can reduce these medications and leave them behind.

While the committee recognises that there could be sub-groups that these medications are indeed effective for, the lack of understanding of chronic pain means that these sub-groups will be side-lined, together with everyone else.

Diverging views

EULAR revised guidelines for fibromyalgia gave a ‘weak for’ rating to recommendations for Amitriptyline, gabapentinoids, SNRIs, Tramadol, Acupuncture, CBT, Hydrotherapy, meditation/mindfulness, and a ‘strong for’ in relation to exercise. These guidelines are now at odds with the chronic primary pain guidance from NICE.

In addition, evidence that was included in Cochrane reviews was not considered in the committee’s initial scope of evidence. A paper entitled "Pregabalin for treating fibromyalgia pain in adults" said: "We found high quality evidence that pregabalin at daily doses of 300 to 600 mg produces a large fall in pain in about 1 in 10 people with moderate or severe pain from fibromyalgia. Pain reduction comes with improvements in other symptoms, in quality of life, and in ability to function."

Further, the NICE guideline has excluded large, high-quality, randomised, double-blind trials that have been used to judge evidence of pregabalin efficacy and safety in fibromyalgia – and were acceptable to the FDA, EMEA, and Cochrane reviews. This has resulted in a more limited pool of evidence and ultimately means that UK patients with fibromyalgia have fewer treatment options than if they lived in Europe, America, or other regions where that evidence pool was considered sufficient.

Unintended consequences

Chronic pain is not an easy subject for the NHS, NICE or health professionals. We can appreciate the need to reduce the over- prescription of opioids and the need to engage in meaningful conversations with patients about their chronic pain. Patients will appreciate that conversation and being listened to!!

We are grateful that people on existing treatment regimens will not, in theory, face change under this guideline, but we are sure that some will be dreading their next medication review with their GP. And we have already heard of doctors whipping treatments away from patients without any tapering or explanation.

Moreover, the service delivery in relation to chronic pain is already dreadfully under-provisioned and this guideline only reduces options even further. The guideline also favours treatments such as group exercise and acupuncture that a) cannot be provided long-term due to NHS cost pressures and b) cannot be undertaken in the patient’s own home. Requiring patients to travel to receive treatment does not promote inclusivity or equality – some patients will not be able to afford to travel, others will not have the physical ability to travel.

The bottom line

People with fibromyalgia have always had an uphill struggle to be diagnosed, to be treated and to be respected for what they are going through. The fibromyalgia community believes that this guideline will be a step back in how the medical profession views them.

Of course, the guideline will certainly save some pennies on the NHS budget in the short term, but it will also result in losses to UK plc tax revenue as patients will not have access to the treatment(s) they require to continue employment.

And while this guideline is positive in its promotion of non-drug therapies, the committee’s blanket approach to all primary chronic pain and the removal of working treatments from some within our fibromyalgia community is not helpful. In fact, we believe it will be counterproductive in the short and longer term – for patients, their families, their healthcare providers, and the UK welfare system.

Regards

Des Quinn

FMA UK Chair

p.s. also added info relevant graphic

Q&A on Nice Changes

[Hel52 in reply to desquinn]

Hi,This is very upsetting we rely on these medications and therapies available on the nhs.

Will it start affecting all of us on benefits we lose money as well sadly lots of us can no longer keep working we are all at different stages with fibromyalgia.

It’s a thought we don’t exist to the NHS and they are more than happy to keep it that way the government couldn’t bring in a law to say it’s a proper disability it’s all in our heads no doubt now we will receive letters from our GP laying out all the reasons to take medications away with no alternatives but pay for it ourselves we suffer horribly with mental health issues and other health problems sorry to be so negative fibromyalgia has had a big impact on all our lives I worry there will be an increase with people not feeling life is worth living this is all the impact of COVID 19 it feels as though long COVID is more important than people with existing fibromyalgia and chronic health issues the government love take from one and give to another money wise they have wasted millions on things that didn’t come to anything but people suffering have to suffer more it’s totally wrong.

[Kitten-whiskers in reply to desquinn]

Oh dear, this is very distressing news. Don't we have to suffer enough

Thank you for posting and making us aware of this

[achydunlin in reply to desquinn]

To be honest I don't know about anyone else here, but I've never been offered any alternative treatments to my chronic pain. All I've ever been offered are increasing doses of gabapentin and anti-inflammatories (which I've had to stop as I now have a stomach ulcer). When I asked about the treatments outlined above the GP looked at me as if I'd grown another head. It's cheaper for them to dole out painkillers.

[LoneEra]

My overarching feeling about this change is sadness. I feel incredibly sorry for those people who are not yet diagnosed - they will no longer have access to the drugs that many of us rely on to ‘get by’.

I take Gabapentin and Tramadol. And while they don’t totally take away my pain, they do assist me to keep functioning. Without them I would not be able to work - full stop.

At the moment (I’ve been in a flare for some months) I also would not be able to exercise without them. And that would lead to a vicious circle of more pain.

I’m not reliant on these drugs at all times, though. In the past I have entirely tapered off both of these drugs and had months and months without them. Not everyone becomes addicted to them by any means.

The psychological side of all of this is also heartbreaking. Denying people painkillers is essentially like saying “the pain is in your head.” As if we haven’t all heard that enough times over the years.

Lots to think about, that’s for sure.

[saluhouse in reply to LoneEra]

Hi. Do you think Long Covid (as I understand it - a very similar condition to fibromyalgia) might force a rethink on these treatment protocols? Hope so.

Xxx

[LoneEra in reply to saluhouse]

Good question. I'd love to think that WE could somehow trigger a rethink

desquinn commented in a long covid story recently: healthunlocked.com/fibromya...

I don't know enough to comment from an informed perspective, but I imagine the NHS will find themselves with many long covid sufferers looking for chronic pain treatment...and not satisfied with 5 weeks of acupuncture (slightly tongue in cheek response, but you know what I mean) xxx

[desquinn Partner Volunteer FMAUK Trustee in reply to LoneEra]

I am not convinced they are the same thing. But I am sure that we will have more people with fibro next year when we have covid in the rear view mirror.

Its easy to make comparisons from the outside and the people that help us are helping these patients. It should add legitimacy to fibro, me and other conditions that they unexplained and unconnected symptom clusters do happen as a result of a biologic event like covid and that is undeniable. hopefully it is an opportunity for things to improve for us but correlation is not the same as being the same thing or origin.

[LoneEra]

Yes...I suspect some of us will be challenged over our meds as a result of this, even though the guideline is not meant to apply to patients with existing treatments in place. We will need to be assertive!

Totally agree with you on costing the NHS more in the long run. And as for the cannabis...well!! 🤦🏼‍♀️

[Kitten-whiskers in reply to LoneEra]

I am already hassled over my liquid levothyroxine, I have about three bottles a year , its amazing the amount of agro I get over that. I can not be without that,

[LoneEra]

I’ve never had any of those treatments on the NHS, either. I’m all for alternative therapies and I find exercise to be a massive help with my fibro. I also have acupuncture now and again with a physio I see privately.

But to only be offered 5 weeks of these non-pharmaceutical therapies on the NHS and then to be left to fend without any painkillers is harsh to say the least.

Antidepressants don’t suit everyone either, for a variety of reasons. I gave up taking amitriptylene and duloxetine because I experienced weight gain. And as a recovered anorexic, that’s tough. So I was happy to have other pharmaceutical options.

I also worry about new fibro patients who have unsupportive families, friends and bosses. Can you imagine explaining you have this awful pain all the time and it’s so bad you can’t move...and then saying that the treatment for it is CBT or acupuncture? That is not going to help with having this disease taken seriously ☹️

[LoneEra]

Have a read of this article - says pretty much everything we’ve discussed: google.co.uk/amp/s/www.inde...

[Cat00]

I was told my problems were "too complex" for CBT and so it couldn't be offered to me. I paid for my own accupuncture but it make no difference. Mind you none of the pain meds made any difference either so all I rely on is exercise and an array of different shapes hot water bottles! Although I have just paid to see an Osteopath (£70 eek) just bc the physio dep. only offer phone calls, I'm not good on phones, and I need someone to look at the whole of my body.

[Braveheart1]

I honestly believe that without pain medications I wouldn’t be here today! I was so desperate with pain levels extreme lack of sleep I sunk into depression and questioned whether my family deserved to put up with me! That was at my lowest. Pain meds help me function, improved my sleep and my painLevels improved slightly but even just taking the edge off helped me to cope!

[Lifelessons]

Thank you for posting this. I don't know what to say... This is devastating, especially as i am just about to speak with my doctor about getting an official diagnosis on my record, for fibromyalga. I can only hope we can get some new drugs that will give us some relief.

[LoneEra in reply to Lifelessons]

There are definitely still drugs that can help. And lots of self help measures too. But it must be a frustrating time to be getting a diagnosis and I do feel for you ❤️

[Catt69]

I've never posted before, but after reading this I'm really panicking. Like most I am sure.

I had a nervous breakdown which triggered my fibro, but while under a psychiatrist the mentioned drugs, pregabalin, amitriptyline, antipsychotics and antiepilepytics as well as the occasional benzo, which are currently prescribed for most to reduce chronic pain, were prescribed for different aspects of my mental health, the only thing I take for my fibro directly is codiene (which does help somewhat and sometimes)

I'm sure all these meds probably do reduce my pain but as I was on them before my pain started I dread to think what it'd be like without them.

I dont get flares as such, its just constant for me.

I've been on them for 10 years now, my gp who knew me through it all has just left, and I'm already fighting to get a med review to increase or change from codiene, and arguing with them over the reason I take all these tablets.

I'm scared witless that they'll reduce them and my mental health will spiral again.

I was almost ready to give in, but this has made it worse.

Thanks for listening. 😊

[saluhouse in reply to Catt69]

Hi Catt. Hope this isn’t going to sound trite - but don’t panic. Try not to catastrophize. You will just make yourself feel worse.

Your new GP might be sympathetic and helpful. I was in hospital recently with a broken hip - have to say the younger doctors were much more knowledgeable about fibromyalgia. Kept trying to give me strong painkillers because they thought my pain threshold was low due to the Fibro.

So why not wait and see. Then - if you aren’t happy with the outcome - deal with it then. But don’t lose sleep over something that might not happen. Let us know how you get on.

Xxx

[Catt69 in reply to saluhouse]

Hey, thank you.

I've already told myself that, and I know I may be overreacting. Doesn't stop your mind wandering there when you're tired and fed up unfortunately.

But I hear what your saying. 😊

Maybe some new doctors will be employed at my surgery. I've been through the permanent doctors (there are not many of those) and the locums are even worse, they just rush through and no offence to anyone but there can be a language barrier with some. They just don't seem to have the time to listen anymore.

The last one asked where the pain was, I said everywhere and there was silence, did make me giggle.

I can only hope. xxx

[LoneEra in reply to Catt69]

Yeah, it can be very worrying - especially when your meds help keep your mental health in the right place. But I think if you explain to your new GP in the way you have to us, they will come to understand.

Personally, I find it harder to assert myself when I’m speaking and easier in writing. So if ever there’s anything that I need to challenge the GP on, I tend to write a letter or email explaining my stance. This could be an option to consider.

Also, the infographic Des posted could be a useful tool for arguing your corner as it clearly states that people already on meds should not be asked to change - and as you say, some of these meds do help your pain as well as your mental health.

If it’s going to be a real worry for you now...how about drafting a letter/email to the GP tonight? You don’t have to send it, but if you have it all written down, with an action plan, you might find it easier to stop thinking about it.

Please come back to me if you’re still worried. I am a massive overthinker and I know how negative thoughts can become overwhelming xx

[Catt69 in reply to LoneEra]

I've got to find one that will give me the time to say what I need to. With extreme anxiety coupled with brain fog the words just don't come. 😆

I do end up emailing the practice manager but that's when it gets so bad, such deep despair that I've got to moan at someone. Gets what I need done in flash which is bizarre, only works when it gets that bad though and not when your coherent and calm.

Although once I start writing it I get emotional and tongue tied so to speak, and it ends up incoherent. 🤪

We can only laugh at ourselves sometimes.

Reading what you lovely people write really helps. I wish I had some little nuggets of useful help to give to others, but I just lurk. Haha.

Thank you xxx

[glochessum]

I feel if they stop our pain medication the suicide levels will rise considerably.

[Makie-Uppie]

This a bit like the rich dictating the wages of the poor, they have no idea really.The people making these decisions need to have a heavily infected wisdom tooth, the dentist drilling down through your head to get at it the wrong way, a migraine, someone taking a hammer to your hands and feet at the same time as you have sat in a wasps nest, all this at once accompanied by anything you eat blasting out of any orifice it can find to the human impression of a donkey giving birth.

Then they should be allowed to make those decisions, you have to laugh at them sometimes. The worst of it is you can always find someone worse off than yourself, so why should they not be helped, so what if the help is a biff iffy, during one of my many blackouts I was helped to my feet by a drunk, did I tell him "No thanks mate your over the limit".

[CheetieCat]

Only just noticed! This is awful, there is no way I'd be able to continue working, hard enough with meds but without?? I really despair for people at the beginning of their chronic pain saga. If we could only 'lend' them our pain without meds for a day they'd be literally throwing medication at us!

[LoneEra in reply to CheetieCat]

I agree - as I said above, I cannot get to a functional level of a morning without my meds (Gabapentin and Tramadol). I don’t rely on meds alone by any means. I do physio, swim, eat well, stretch regularly have acupuncture now and again etc. And sometimes I taper off my meds entirely for months at a time.

But for future chronic pain patients to be denied drugs like this is the equivalent of chopping a leg off the Eiffel Tower!! It will soon start to topple 😢 Removing this option will make it a lot harder for some people to keep going - and as you say remain in employment.

Also, how long are the waiting lists going to be for therapies like acupuncture? With meds, you can get them the day you see the doctor and you can take them in your own home. No waiting and no travel. Having to book time off work for appointments to go to acupuncture sessions or whatever would also cause issues with employers, I would think.

There’s so much to this decision that doesn’t appear to have been factored in. We all see what they’re trying to do, but I’m not convinced they see the full picture of the potential impact on people with chronic pain. Very sad.

[CheetieCat in reply to LoneEra]

Absolutely agree! For instance it's weeks just now to get a physio appointment. When you're in so much pain you need help as soon as possible even if it's only for the short term & that's where medication is invaluable.