Home General Info & Awareness Petition To Review UK NICE Guidelines For Chronic Pain & Opioids

Petition To Review UK NICE Guidelines For Chronic Pain & Opioids

by InvisiblyMe

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 <<<

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.

Pictured Quote Reads: Dear NHS, NICE & Worldwide Healthcare Services & Media Outlets : Stop grouping chronic pain patients correctly using prescription opioid painkillers, with the addicted taking pills without pain & cutting them with illegal drugs. Many with chronic pain take painkillers as a last-ditch option. They help make us somewhat functional human beings just to get the basics done each day. Any more than that would be a miracle.

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.

Pictured Quote Reads: The UK health regulator NICE drew up new dangerous & potentially fatal guidelines in 2019 for NHS chronic pain treatment in order to reduce & remove opioids. This is what happens when the people making decisions do not have a clue what it's like to live with debilitating chronic pain & won't be hurt by the fallout of their actions.

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?

Pictured Quote Reads: The UK's NICE have made dangerous changes to NHS chronic pain guidelines, suggesting the likes of CBT, acupuncture & exercise should be used instead of painkillers for chronic pain treatment. You'd think they were joking. They're not. Chronic pain is intense, exhausting & overwhelming. It gets under your skin as a constant companion every second of every day. It destroys lives. Taking away opioid painkillers will be a death sentence too many in pain. Myself included.

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 

A photo of a desktop with a notebook saying "Chronic pain" and around it are pills. Underneath is written the post title: Petition to review UK NICE guidelines for chronic pain & opioids.

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. 

A white background with four pink and blue coloured capsule pills close-up. Overlaid is the text: It's okay if you need prescription meds to manage your mental or physical health. # End stigma # No shame # No Judgement. By Invisibly Me.

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. 

A black scroll divider.

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.

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38 comments

Animalcouriers July 11, 2022 - 4:13 pm

Signed. Do hope enough people do and something positive comes through!

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InvisiblyMe July 14, 2022 - 3:37 pm

Thank you so much for your support with signing this, it’s much appreciated. It seems like a crazy large number of signatures needed & I’m sceptical as to what’ll happen if it we get enough, but all we can do is try 🙏 x

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Sandee July 11, 2022 - 4:30 pm

Big pharma is out for big pharma and they need to make it about the patients. They need the care they need.

Have a fabulous day and week, Caz. Big hug. ♥

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InvisiblyMe July 14, 2022 - 3:41 pm

Well said about big pharma. Sadly the same sentiment goes for the governments, healthcare services and providers. I hope you had a great cruise last week and that this week is likewise fabulous, Sandee. xx

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Ashley July 11, 2022 - 4:46 pm

It’s absolutely horrible that people with chronic pain are being treated this way.

A lot of the opioid crisis is overdoses because street drugs are being cut with fentanyl and people don’t actually know what they’re taking. Depriving people in pain of their meds isn’t going to do a thing to address that problem.

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InvisiblyMe July 14, 2022 - 4:28 pm

Absolutely agree, Ashley. They mix the data on overdoses, then fail to differentiate between people in pain taking meds appropriately, and those doing something else entirely. It’s ‘virtue signalling’ from healthcare providers to claim they’re doing something to ‘fight the opioid crisis’, but it’s dangerous ignorance that will hurt many patients who are already struggling.

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Barbara McLullich July 11, 2022 - 5:57 pm

Wow, this has really shocked me Caz, I mean what about some like myself who used to take Tramadol and Nortryptline? It’s a minefield and I am afraid the people who are suffering the most will come out the worst in this. Thanks for covering this subject xx

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InvisiblyMe July 18, 2022 - 6:15 pm

I agree – those struggling the most are going to be hit hard. It feels like such an obviously political and damaging move that it’s mind-boggling the guidelines were passed at all. I just hope someone will listen to us mere patients and actually care. Sadly the petition is a long, long way off from the numbers it needs. Thanks for the comment and support, Bar 💜 xx

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Greg Dennison July 11, 2022 - 6:00 pm

Wow…

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InvisiblyMe July 18, 2022 - 6:15 pm

Yep, and not a good wow either!

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craig sabin July 12, 2022 - 1:07 am

It is outrageous, maddenning, unjust, and a thousand other adjectives. I am severely disabled from “primary pain” and is it somehow my fault that there is a shortcoming in the understanding of medical science? I am struggling with this very issue right now with my own doctor. Like you, if all of my medications were taken away I honestly don’t think I would survive apart from some sort of divine intervention. I don’t know and I don’t wish for the worst, but I’m pretty sure there’s a strong risk I would waste away and die from loss of appetite and lack of a will to live in the face of unending, overwhelming pain.

Your article is very well written and well reasoned, and raising awareness is critical. I truly believe that lives are at stake. I pray that those in authority will come to their senses.

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InvisiblyMe July 18, 2022 - 6:24 pm

You’ve put this very well, Craig, I’m just sorry that you know all too well what living with such hideous pain is like. It’s a real life-or-death situation to take away pain meds and make the idiotic and ignorant suggestion of mental health support, anti-depressants or acupuncture. I have primary and secondary pain and have had to fight ignorance on the issue of Tramadol, just like having to fight B12 being taken away for Pernicious Anaemia or stoma products being taken away because of cost-cutting. It’s sickening and it does nothing – NOTHING – to help patients. It’s politics and finances before listening to patients or caring about their experiences.

I just hope that we can get through to someone higher up that will listen and actually care. We have to try but sadly the petition is so far off the number of signatures required that I don’t know where things will go from here. It’s an issue that transcends just the UK though of course. We need a global solution, a global state of awareness and a shift in faulty thinking in order to actually help those living with debilitating pain. Thank you so much for reading & your thoughtful comment, Craig. I really do hope your doctor has some sense and compassion so as to help you rather than hinder you 🙏

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craig sabin July 18, 2022 - 11:38 pm

Thank you, Caz.

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Unwanted Life July 12, 2022 - 11:58 am

I can understand them not wanting to prescribe paracetamol, because that’s costs the NHS far more per perception than it would for someone to buy it themselves. Unless the NHS can prescribe doeses you can buy from a pharmacist? That’s what one of my GPs told me, although that was more than a decade ago now.

It does seem ridiculous to lump everyone in together and deny everyone access to proper pain management. Speaking from someone from an addictions background, if they can’t find evidence of the chronic pain (which I’m guessing is the case with some conditions), then why not do random drug tests for a month to make sure someone isn’t dependant on a substance? That way they could rule out people making false claims just to get access to opioids.

My other thoughts would be to rotate the prescription drugs used for pain management so that addiction becomes less likely. Obviously I don’t know anything about chronic pain and pain management, that would seem like a workaround if they’re worried about creating addicts when helping legitimate patients

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InvisiblyMe July 20, 2022 - 5:46 pm

I agree with you on Paracetamol. The NHS was also paying well above what they should have for it for years, which seems ridiculous. It’d be different for those on things like Paracetamol or Asprin (for heart failure/blood clot patients) long-term, but generally speaking Paracetamol should have been axed ages ago. Medical professionals seem to love to push it though and I don’t understand why because (in my opinion) it does absolutely nothing. I was recommended taking it alongside my meds, and said absolutely not. When I’m in A&E for a twisted bowel and need IV morphine, they try to give me IV paracetamol and proceed to give it despite me clearly saying no.

They don’t seem to be weeding out those without pain and getting opioids because of substance misuse. They could/should focus on that if they’re going to do anything and you make an excellent suggestion with drug testing. It’s a tricky one for sure. Thank you for giving your thoughts – it’s good to get that other perspective from a non-pain point of view with an addiction background. xx

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Despite Pain July 12, 2022 - 3:16 pm

Caz, I just can’t get my head around it and I don’t know why more people haven’t signed the petition. Anybody’s life could change and they could suddenly have to live with chronic pain. If that had to happen, they might then wish they had signed this and paid more attention to us. (I’m not wishing chronic pain on anyone….I just wish people would listen.)
This is another great post to highlight what is happening. It is such a worrying situation. The new guidelines are cruel and unethical.

“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. ”

Virtue signalling is 100% correct. They might think that they will win the war on painkillers and opioids but they won’t. Drug addicts will still be able to find drugs of some description. The only people to suffer will be people like you and me.

I get so angry every time I think about this. Perhaps I should just go for a nice spot of exercise…..

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InvisiblyMe July 20, 2022 - 11:05 pm

You’re right, anyone could end up living with chronic pain, it doesn’t discriminate. Surely a little empathy from those making these reckless decisions wouldn’t be impossible. The same goes for signing the petition, and I can’t figure why it has struggled to get even a tenth of the signatures needed.

I’m glad you picked up on the ‘virtue signalling’ part. I think that’s a pretty big driver for what’s going on in this case. To class those with chronic pain taking painkillers appropriately are not the same as addicts, are not the same as those taking illegal drugs, taking opioids without pain, cutting legal and illegal drugs together, etc. What boggles my mind is how NICE and the NHS are allowed to get away with it – pushing CBT and antidepressants for people on the assumption the pain is in there head!

I get so damn angry, too, Liz. I feel useless, like all these changes are happening for the worse and patients will continue to suffer and pay to price for sheer greediness and ignorance. We’ll be needing the CBT and anti-depressants just having to fight against all this dangerous stupidity!

Thank you so much for your thoughtful comment. We can but try, Liz. We can make a chance, we will make someone listen to us. I have hope. i think. xxxx

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c.a. July 12, 2022 - 3:19 pm

It is disappointing that only British citizens can sign the petition. I am praying that the 100k signatures get blown out of the water by the millions of signers!
I think I mentioned before how NICE was used as an acronym by another famous Brit, C.S. Lewis, in his amazing space trilogy, the third book, “That Hideous Strength.” There N.I.C.E. is the National Institute of Coordinated Experiments, a scientific and social planning agency, covertly pursuing a program of the exploitation of nature and the annihilation of humanity. Almost sounds like Lewis was a prophet?
❤️&🙏, c.a.

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InvisiblyMe July 22, 2022 - 2:41 pm

I wish those in other countries could sign it, too. I fear we’re too far off the requirement and we’ll never get enough in time. I don’t understand why there are so few signees, why it’s so difficult to get this passed around. This can’t be the only way to make a change though; if this fails, I’ll try something else and I know there will be many others on board to do that also.

Yes, you did mention about the acronym before, I thought it was perfect! The annihilation of humanity sadly seems pretty apt with the way they’re going. When I think of NICE, I’ll think of Lewis! Thank you again for your kind comments and your support – I hope you both are having a lovely week so far 🌻 x

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James Viscosi July 13, 2022 - 2:47 am

I hope this petition can make a difference to the government’s decision! It’s shameful how big pharma made massive profits off these drugs and now patients who actually rely on them to live their lives are finding themselves kicked to the curb in the service of cutting costs and giving politicians a talking point.

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InvisiblyMe July 22, 2022 - 2:44 pm

Very well said, James. You’re right about how big pharma have milked this cash cow for ages. The thing is, in the middle of the ‘crisis’ of addiction and overdoses are those who need these medications and use them appropriately, and the benefits of said meds are completely overlooked. They’re not making these recent changes in the UK, US and elsewhere out of the kindness of their hearts because they care about patients. Just like adding extra tax on chocolate bars while making them smaller isn’t about consumer health. We know it’s all nonsense. But time and time again, they’re all getting away with it.

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The Oceanside Animals July 13, 2022 - 3:17 am

Lulu: “We can’t sign the petition since we’re, you know, animals.”
Charlee: “But we have said it before and we’ll say it again: A lot of the time, we pets get better care than the humans.”
Chaplin: “We sure hope you can get the people in charge over there to listen to you!”

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InvisiblyMe July 22, 2022 - 3:27 pm

Thank you, guys. My mother always said years ago I should have gone to the vet. I’m seriously considering it these days!

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Ann Coleman July 13, 2022 - 3:50 am

I’m so sorry! We’re dealing with a back lash against opioids in the States as well, with doctors being more reluctant to prescribe them and hospitals being more reluctant to administer them. It’s not quite as bad as the UK (that’s the upside of not having national health care, there is more choice) but it is still hurting patients who truly need the strong pain meds. I don’t understand why we need to swing from one extreme to the other! First we’re giving them out like candy, and now they are so very hard to get. Whatever happened to common sense?

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InvisiblyMe July 22, 2022 - 4:21 pm

It’s sadly not confined to the UK and I’m not surprised as the ‘opioid crisis’ first took off in the States thanks to big pharma’s lies and underhanded dealings. The governments and charities and healthcare systems seem to overlook that some people genuinely need these medications, they benefit from them, they’re alive because of them. They overlook the benefit to painkillers like opioids and put those taking them appropriately with those that are addicted, using them without living with pain, selling them on, cutting them with other drugs, taking cocaine or other illegal drugs. They’re just pushing them all into one box and the blanket response is likewise as grossly inappropriate. You’re right, it’s one extreme to the other. A little common sense really would go a long way, wouldn’t it?! Thank you for sharing your thoughts, Ann. Well said 🙏🧡 xx

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Charlotte July 14, 2022 - 10:15 am

Yet another kick in the teeth for chronically ill people, as if battling to be heard & living with illness wasn’t enough. Signed the petition Caz & thank you for the great post. x

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InvisiblyMe July 22, 2022 - 4:25 pm

Absolutely, Charlotte. A kick in the teeth none of us need and I dread to how many people this will harm, how many people will suffer as a result of their ignorance. Where’s the compassion and common sense? It seems dramatically lacking. Thank you so much for signing the petition, it’s much appreciated! 🙏 We’re sadly way behind on getting enough signatures so I don’t know if we’ll make it, but we have to try. It seems very difficult to get this shared out enough and I’m not sure why. You’d think this would be a burning issue but so few want to care. Then again, maybe they would if they had to live in pain! Thank you again lovely 🌻 xx

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annieasksyou July 15, 2022 - 1:53 am

So very sorry to read the uncertainty and apparent imminent harm that will be heaped on you and so many millions of others. Is there no patient rights org to lead the battle for those who’ll suffer? What about drs who treat pts with chronic pain?
This is deeply disturbing news, Caz. I’m with you!
Annie xxx

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InvisiblyMe July 22, 2022 - 4:43 pm

You would think there would be patient groups and MPs and doctors and all sorts up in arms about this, wouldn’t you? I’ve not heard anything. It’s just a couple of patients here and they’re doing all they can and I don’t think it’ll be enough. But the petition isn’t the only way and I’m not giving up. I’d hate to think how severe the consequences will be for patients now and in the future. Thank you for your support, Annie. It’s good to know there are such awesome people here 💜💙💚💛🧡

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Lee Good July 16, 2022 - 12:58 am

Hi, I’ve shared this on twitter and facebook and hope it helps get more signs for this petition. It’s good to see that the Government responds to all petitions that get more than 10,000 signatures in the UK. Good Luck. Thanks so much for linking this article up at Fibro Friday and your ongoing support there to raise awareness of fibromyalgia and chronic illness in general.

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InvisiblyMe July 22, 2022 - 5:06 pm

Thank you very muchly, Lee, your support is much appreciated! I don’t think we stand much chance of getting to 10,000 signatures but we have to try. For some reason it is very, very difficult to get the signatures or get this spread around. You’d think people would be up in arms about it but no. It’s weird. But if this doesn’t work, I’ll try something else. Thanks again lovely 💜 xx

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Esmé Slabbert July 19, 2022 - 3:11 am

Hi Caz, Congratulations. As you’re in the top 3 for this week, you can view your additional promo on my FB Page.

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InvisiblyMe July 22, 2022 - 10:59 pm

I noticed that on FB – thank you so much for sharing this post about the petition! Any extra signatures from anyone in the UK would be hugely appreciated. It is turning out to be incredibly difficult to spread this further and we’re miles away from the figure needed. But we have to try. Thanks lovely xx

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Ellie Thompson July 20, 2022 - 6:15 pm

This is absolutely appalling, Caz. Considering I live in the UK, I was unaware of this happening until I read your post. I ought to have been more aware of this, given that I was denied effective pain medication for, initially, acute pain despite the severity of it. The doctor couldn’t find a reason for it and passed it off as sciatica which it wasn’t. The strongest medication they’d give me was Naproxen which did nothing and Amitriptyline which did even less. As I had an addictive background, albeit not with prescription of illegal drugs, I was refused stronger pain medication. I was in agony. Finally, after several months, the doctor agreed to send me for an MRI scan. The scan showed that I had six fractures to my pelvis without even having had a fall. They finally gave me morphine patches which just took the edge off the pain. I’m one of the lucky ones in that I’ve mostly healed and no longer need the morphine.

I can only imagine the terror you must feel about having your medication withdrawn given the level of pain that you’re in from so many awful conditions. Big pharma is all about money and they have so much to answer for. It makes me furious. Patients are left with no alternative other than to suffer at their hands. It’s so, so wrong. I have signed the petition, but am surprised that there are so few people that have done so. I’m grateful to you for this post, for opening my eyes to this (I had no idea this was happening) and for sharing your experiences. With all my heart, I wish you well, Caz, and I hope you won’t have your medication withdrawn. I can understand you saying that without your pain meds, you would be unable to survive. In this day and age, this should not be allowed to happen. The governments will do nothing. When it boils down to it, it’s all about money and power. Sending you love and comforting hugs. Ellie xxx 💜

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Blanca July 20, 2022 - 7:24 pm

Hi Caz! I just tried to sign the petition but I was not allowed as I am not British citizen.

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Caspiana July 22, 2022 - 12:00 am

This is awfully worrying.. my sister who lives in the U.K. has chronic pain and it’s already bad enough they won’t give her enough pain relief.

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Lucy July 23, 2022 - 10:09 pm

I can’t believe this Caz, thank you for writing this post and raising awareness about this. It’s so sad and yet another example of how the medical system is letting patients who it’s meant to be caring for down. It highlights just how little knowledge and awareness there is about the impact chronic pain and illness has and how medications can allow people to improve their quality of life and do activities they otherwise wouldn’t be able to. I really hope something can be done to avoid this. Thank you again for raising awareness about this xx

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shankjoejoe July 26, 2022 - 11:33 am

Here in the US, doctors began taking narcotic pain medication away from their patients several years ago. It’s been at least 10 years. Interesting fact, around the same time, the streets became flooded with the most smokable form of heroin ever to hit the market. Fentanyl followed shortly afterwards. When this new heroin hit the streets, something else happened. American Soldiers could be found guarding poppy fields in Afghanistan. Apparently, it’s a very important part of their economy, and the military wasn’t allowed to distrupt such a vital cash source.

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