Petition To Review UK NICE Guidelines For Chronic Pain & Opioids

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Chronic pain can be a debilitating nightmare to live with. It’s overwhelming, damages our mental health and steals from our lives. Many individuals, rendered non-functional by pain and often chronic illness, turn to prescription painkillers as a last resort. For some of those people, opioids are what keeps them alive. So when is the UK governing body NICE trying to take this away from them? Let’s take a look at the devastating changes to NICE guidelines that are being employed for NHS patients, why it’s a dangerously ignorant move, and how you can help by signing a vital new petition. 

>>> Please take a look at the chronic pain petition to sign and share here <<<

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The Supposed “Opioid Epidemic”

The so-called “opioid epidemic” (or “opioid crisis”) has swept up parts of the world like the UK and US. It’s true that opioids, addiction and overdoses have been, and continue to be, serious problems worldwide. However, the distorted media attention and incorrect assumptions that are made about it are having a severely detrimental impact on patient healthcare. 

It’s important to note just how enormous the healthcare industry is, and how opioids themselves became a cash cow for big pharma, investors and the prescribing doctors. Beneath all of that, the actual benefit some opioid painkillers have had on the lives of those with chronic pain is typically overlooked. 

Related Reading : Why The Opioid Crisis Is Dangerous For Chronic Pain Patients

Of course the safety of painkillers and the issue of addiction are incredibly important. There should be more transparency, especially when it comes to the pay deals and perks between big pharma, healthcare services and individual medical professionals to push such products. There should be more robust research and studies before they’re rolled out to populations. There should be easier ways of reporting adverse effects, and companies should be held accountable for acting on those and sounding the alarm should there be any concerns. Patients should be well informed before, and supported during, treatments, especially when it comes to using riskier painkillers, like Fentanyl patches or morphine. Doctors have a duty of care and need to ensure patients are not in harm’s way, then promptly provide help if it’s needed or wanted.

The problem then comes with making generalisations, judgements and assumptions. For instance, media and medical bodies are often confusing chronic pain patients (those that are appropriately taking prescription opioids) with individuals without pain (who are addicted to opioids and often adding them alongside illegal drugs like heroin). The “opioid crisis” is then used to refer to all individuals on opioids as though they’re one and the same, which they are not.

Government & Healthcare Service Reaction 

In an effort to improve their image by reducing their figures of opioid prescriptions, healthcare services are drawing up inadequate alternative treatment options. Meanwhile, healthcare workers take it upon themselves to reduce or remove prescriptions from patients.

It’s my personal opinion that this is highly encouraged and likely financially rewarded. The healthcare services, governing bodies and governments are incentivised to cut painkillers from the pharmaceutical picture, particularly opioids in light of the media attention they’ve received. Some healthcare providers are moving towards a more natural, holistic view of pain, one that ignores what chronic pain actually is. 

Instead of opioids, mental health is likely to be targeted, with the likes of antidepressants and CBT to be offered. Sadly, real pain will not respond to changing your thought patterns. It may help how you react and deal with constant pain, but you’ll already be thoroughly disadvantaged without any pain relief you actually require. Physical pain is going to be “treated” with the likes of exercise and acupuncture. I use the word “treated” lightly because these are not pain relief treatments. These are ways to pretend that something is being done to help patients without actually helping them, based not on medical knowledge but on assumptions that their pain is not real, not significant enough, or not worthy of effective treatment. At least not when cutting costs and getting gold stars for reducing prescription figures is at stake. 

The UK’s NICE Guidelines For Chronic Pain

In the UK, NICE (the National Institute For Health & Care Excellence) revised their chronic pain guidelines in 2021. These guidelines are what healthcare services in the UK are to use for diagnosing, treating and managing patients. I wrote to them with my thoughts during their earlier phase of debating the guidelines. It seems that I, and all other chronic pain patients who had given their input, was ignored. It seems that medical reasoning, saving lives, improving quality of life and taking on board patient input are not things NICE, our government or NHS generally are overly interested in. Unless it suits them, of course. 

It should be made clear that NICE are differentiating between Chronic Primary Pain and Chronic Secondary pain. This is part of their new “person centred approach” to review what the pain is and thus how it should be dealt with. Secondary pain is referring to pain with a known or observable cause. Primary pain is described as having “no clear underlying condition, or symptoms may seem to be out of proportion to any observable injury or disease”. In a nutshell, secondary pain is viewed as “real” and primary pain is not. 

NICE is recommending not prescribing any types of pharmaceuticals for Chronic Primary Pain, aside from antidepressants. That means no corticosteroid injections, no benzodiazepines, no antiepileptic drugs like Gabapentin, no anti-inflammatories, no paracetamol and, crucially, no opioids.  For those that are on already on them prior to this new guidance, practitioners are told to discuss with patients how there’s no evidence of such drugs helping chronic pain and how they come with risks, then try to reduce or remove patients from said drugs. The fact that these medications have helped countless people to be a little more functional living with chronic pain is conveniently overlooked.

For Secondary pain with an identifiable cause, it seems opioid alternatives will still be pushed, but pharmaceuticals are at least on the table. Alternatives to opioids may include other pharmaceutical options, such as swapping out Tramadol for Amitriptylene. In other cases, it may mean suggesting “alternative” treatments, much like for those with ‘primary’ pain.

Alternative treatments to painkillers recommended for Primary Pain patients (and suggested as alternatives for those with secondary pain) by NICE include :

• Encourage exercise or offer supervised group exercise programme
• Psychological therapies like ACT (acceptance & commitment therapy) or CBT (cognitive behavioural therapy)
• Antidepressants

That’s about it. I kid you not.

Focusing on alternative “treatments” is all very well if the patient needs are taken into consideration. Sadly, it appears that’s not often the case. For some people, opioid-alternatives may be manageable and sufficient to help them live and function well. For others, they may prove completely useless, not touching their pain or helping them to function in the slightest. Patients then face more suffering, more fighting with medical professionals and an increasingly poor quality of life. 

NICE and the NHS often fail to appreciate how each person’s situation and experience of pain is different and unique to them, or how what works for one may not work for another. Claiming to be starting to take a person-centred approach through these guidelines does not mean that’s what they’re doing. There’s also little appreciation for how there are many different causes of pain, some more straightforward than others, some with no identifiable cause. Simply because you can’t see it or test it doesn’t mean it doesn’t exist. It also doesn’t mean that one type of pain is more worthy than the other if you’re not appreciating the impact on the patient’s life. 

For many individuals with chronic pain, opioids are a last ditch option reluctantly taken to keep them just about functional enough to get the basics done each day. There’s a reliance on the medication because it’s needed, not because there’s an addiction or a psychological attachment to it. Without that medication, pain can be intolerable, unbearable and incredibly debilitating.

Chronic Primary Pain : It’s All In Your Head

Reading between the lines of the NICE recommendations, it seems they want to check that the patient isn’t over-exaggerating their pain, not necessarily on purpose even, but because of their life situation, stress, depression or their pain tolerance level, for instance. To me, their guidelines for Primary Pain relegate all those with pain that cannot be adequately tied to a blood test result, scan or visible cause to the naughty step, to be treated by alternative therapies designed to help with mental health, not pain. 

They’re questioning whether pain without a concrete or visible cause is really ‘real’, or whether it’s attributable to mental health in some way. Perhaps a patient is making up the pain to get out of having to work, perhaps they’re “sensitised” to pain because they’re anxious, or perhaps they’re feeling stress rather than pain. 

There’s no denying that there’s a two-way relationship between mental health and physical health. But I don’t think we need to undertake costly research to conclude that the majority of chronic pain patients are suffering from real, true, genuine chronic pain. Pain that’s not in their head, pain that’s not for attention-seeking, pain that’s not a result of depression or anxiety. 

Of course there will always be some for whom pain is psychosomatic. And there will be benefit cheats or those that want attention or sympathy. However, I do not think these cases account for the majority, nor even a large enough minority to warrant guidelines like these. Making the assumption that an invisible condition like chronic pain is more likely to not be genuine is a big mistake, one driven by the desire to cut costs and improve statistics so the UK NHS can say they’re fighting the war on opioids. 

There has always been and will continue to be greater difficulty for those with pain that doesn’t have an easily identifiable, explainable, tangible and testable cause to get the treatment they need. If it doesn’t show up on a scan, a blood test, a trustworthy report or in some other concrete way, medical professionals are more likely to consider the possibility that pain is not as bad as the patient thinks or is causally related to mental health. There will also be more difficulty for those with lesser understood conditions. For instance, the invisible illness fibromyalgia, which already has a lot of scepticism and stigma attached to it despite greater awareness of it in recent years.

This is going to get far worse with the new guidelines because pharmaceuticals are not going to be offered, so patients may never know whether they could be helped by them or not. Instead, they’ll get an exercise program, anti-depressants or CBT.

The changes to NICE guidelines are like telling pain patients that they’re not believed, that they don’t matter, they’re weak, they’re lazy or they’re simply not important enough to try to actually help. Throw some CBT or exercise plan their way and pretend it’s the holistic approach focused on wellbeing. Many of these patients will have already fought for months or years to be heard and taken seriously; this will be another kick in the face when we’re down. 

Withdrawing Opioids : A Fatal Mistake

For those with chronic pain, it can be an immense burden that can affect every part of their being. Nobody asks to live with chronic pain. Nobody wants it. They just have to deal with it as best they can. It is not helpful to have to fight with their doctors and against their government and healthcare services to get or retain the medication that they need just to get by.

I already know one woman online who had her opioid medication revoked and who, after months of fighting for it, heartbreakingly couldn’t do it any longer. She killed herself. She won’t be the first and she won’t be the last thanks to misguided efforts to strip patients of vital painkillers. How many need to die before there’s some compassion in the way we treat chronic pain? Will our governments and healthcare services even care?

If those in power making the calls to reduce and remove prescription painkillers had the tiniest idea of what living with chronic pain is like on a constant, agonising basis for years on end, there’s no way this would be happening. I can see the stark lack of understanding any time I get “have you tried paracetamol?” It would be laughable if it weren’t so astoundingly maddening. Similarly, suggesting CBT as a “treatment” to relieve pain instead of painkillers and get you back into work or back to moving more is astoundingly maddening.

There’s no recognition, understanding or compassion for what serious pain every second of the day is like to live with, how it can affect every part of your life, chip away at your mental health and limit the way you live your daily routine.

For many, opioids are literally life-saving. I wouldn’t still be here if without them. If they were taken away, I would be too. They do nothing for me other than to make things a little more manageable and to keep me somewhat sane when pain from nerve damage drives me to utter distraction. They don’t give me my life back or allow me to do what I used to because I also live with chronic illness, and they are nowhere near strong enough despite taxing the max dose each day. I don’t want to need them. I spent the first few years of this pain shunning them because of exactly this judgement and stigma around painkillers. Enough is enough.

While this post predominantly refers to limiting and removing painkillers in the UK for some patients, such changes have also been happening in other countries. It seems it’ll be an ongoing trend, unless or until there’s enough uproar to inject some common sense into the equation and stop these dangerous changes.

Challenge The Ignorant & Dangerous Guidelines – Sign The Petition 

There’s a more recent petition that is desperately in need of thousands more signatures. 10,000 are required by September 2022 if there’s any chance for it to be considered and discussed in parliament. It’s to ask for the NICE guidelines to be reviewed. If you agree with this, you could make a difference with just your signature, so it would be greatly appreciated if you could sign and share.

>>> Please take a look at the chronic pain petition to sign and share here <<<

I find it hard to call these alternative options “treatments”, because the likes of exercise, acupuncture or CBT are completely laughable to me living with chronic pain. I find it so angering and insulting that I want to scream. In my mind, all NICE are doing is sectioning off a large proportion of patients – those without a concrete cause and whatever they deem to be an appropriate reaction – and treating them as mental health cases instead of physical pain cases.

In my opinion, it has nothing to do with patient needs or saving lives, nor is it a move based on science and research. It has everything to do with cost-cutting on drugs, wasting money on “alternative treatment” patients are unlikely to want or benefit from, and virtue-signalling by reducing prescriptions so that the UK government and NHS can say they’re winning the war on painkillers and opioids. 

NICE, the NHS and governments conveniently fail to distinguish between the abuse of drugs and chronic pain patients using them as directed. They overlook that opioids have been keeping many chronic pain patients alive and somewhat functional for decades. What happens when they are no longer an option for patients? I don’t think they stopped to ask themselves that question, or maybe they don’t really care about the answer. 

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These guidelines are ignorant, illogical and dangerous. This is the problem when big decisions are made by people who don’t have a clue what they’re dealing with and who won’t be hurt by the fallout of their actions. 

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Do you need opioids to function with pain? What are your thoughts on the proposed changes to chronic pain treatment guidelines?

Also, a huge THANK YOU to anyone and everyone who is able to sign / share the petition. It is much appreciated in trying to make a difference to patients today and in the future living with pain.