Please take action by giving your feedback to NICE before 5pm 14th September 2020.
NICE (who give guidance to the NHS which doctors follow) are reviewing the guidelines for chronic pain and making it worse yet again for us.
They are now advising against the use of all painkillers and most medications in draft guidelines!
They state:
Do not offer any of the following, by any route, to people aged 16 years 10 and over to manage chronic primary pain:
•opioids
•non-steroidal anti-inflammatory drugs
•benzodiazepines
•anti-epileptic drugs including gabapentinoids, unless gabapentinoids are offered as part of a clinical trial for complex regional pain syndrome
•local anaesthetics, by any route, unless as part of a clinical trial for complex regional pain syndrome (see research recommendations)
•local anaesthetic/corticosteroid combinations
•paracetamol
•ketamine
•corticosteroids
•antipsychotics
Opioids
They are claiming opioids don’t work for chronic pain even though millions of us use them safely and without would be unable to carry on with the unbearable pain without them!
They are basically saying they don’t work and you will get addicted. This is very worrying and scary to see as millions in the UK could be taken off their opioids once this gets published.
Opioids for chronic primary pain
No evidence was identified on the effectiveness of opioids for chronic primary pain. Although there were limitations, evidence from non-randomised studies on the long-term use (more than 6months) of opioids for chronic pain suggested an increased risk of dependence. Based on their experience, the committee agreed that even short-term use of opioids could be harmful for a chronic condition. The lack of evidence for effectiveness of opioids, along with evidence of long-term harm, persuaded the committee to recommend against opioid use for people with chronic primary pain
They say:
Pharmacological management of chronic primary pain
Consider an antidepressant,either duloxetine, fluoxetine, paroxetine, citalopram, sertraline or amitriptyline for people aged 16 years and over to manage chronic primary pain, after a full discussion of the benefits and risks.
Well I have tried those and were about as effective as eating a mint!
So what if we have tried those and have opioids that work? We get taken off and left with nothing so as not to cost the NHS too much? This is inhumane and barbaric treatment.
This is leaving people with nothing to use for severe debilitating pain! You can’t replace opioid therapy that has taken a long time to get to the point of working well for you, with things like CBT and mindfulness which pretty much everyone will have already tried before getting to the point of opioids!
You don’t become addicted by using them correctly. The people that abuse opioids are rarely ever chronic pain patients, the fact is that people seem the “opioid epidemic” everywhere and think they must ban opioids! Opioids include heroin and illegal street opioids yet they all get put in the same pot.
Millions and millions of chronic pain patients worldwide use opioids for chronic pain with no issues for many years. You don’t get addicted to something just because it can cause addiction if you misuse it!
Cannabis
They are also again saying cannabis doesn’t work for chronic pain as they usually do (which as many of us know, it does for lots of us). It has been proven to be a safe treatment in many countries, including the UK itself! (As long as you have money and see a private doctor of course…..)
Cannabis-based medicinal products for chronic primary pain
No evidence was identified on the effectiveness of cannabis-based products for chronic primary pain, and some evidence suggested that the treatment could cause adverse events in the shortterm. However, this was limited evidence from a small study. Although the committee agreed that more research would be useful to inform future practice, it was decided this was adequately covered within the NICE guideline on cannabis-based medicinal products.
Summary
It does also state:
The committee agreed that when recommendations had been made against the use of medicines, there should be guidance for people who are already taking these. They therefore included a recommendation based on expert opinion to explain the risks of continuing a medicine, to inform a decision about whether the risks outweighed the benefits and whether the medicine should be reduced or stopped. A recommendation was also made to highlight possible withdrawal symptoms after stopping some medicines
So hopefully if you are on them already they won’t force people off but as many of us know, most doctors already are taking people off so this could be down to your doctor.
Many people have already been taken off their painkillers so this will get more widespread.
They are now recommending exercise, mindfulness and CBT for chronic pain, which doesn’t work for the majority of people including myself with severe chronic pain!
They are recommending this as it cheap, that is why! Money over patient care!
Ironically most of what they are now recommending instead of painkillers such as CBT, mindfulness etc, clearly says “not enough evidence” yet they are still recommending it instead of opioids which do work and have for centuries, and still not recommending cannabis for pain that has evidence it works, plus lots of patients switching to cannabis from opioids, but they won’t recommend that either?! This makes no sense at all and shows they just care about money! Inhumane treatment courtesy of NICE.
They are pushing people to break the law for their pain medication or suffer.
This is why so many people have turned to dangerous street drugs as they couldn’t get the painkillers they need for their chronic pain from their doctor.
Did you know lots of people that buy off street drug dealers are doing so for this reason?
Sadly there are also many that also commit suicide as they cannot deal with the pain after being cut off off from painkillers when there is nothing else available.
Imagine cutting off millions of people with severe chronic pain?
This is barbaric and clearly just to save money. This is not caring for chronic pain patients at all.
Take Action NOW!
You can give feedback here until 5pm 14th September 2020
I advise everyone to complete the form with their feedback on this torture plan. Organisations will need to register.
Anyone can comment so do! Don’t waste your chance at giving feedback!
You don’t need word, you can use google docs, Microsoft office online, LibreOffice etc. All free!
My Experience
I was unable to leave my bed and was screaming and crying in pain 24/7 unable to sleep and do anything. Utter hell that I do not wish to go back to ever!
I do not wish to have that pain again and at least right now I can live a sort of a life. I can’t go back to that. I can’t!
I have actual severe debilitating pain, it is not in my mind, it is real pain. I have tried everything available before getting to where I am, I have not just tried this and gone ‘oh yeah I won’t try anything else’. This is 20 years of trying things that didn’t work and getting to where I am now.
I would prefer cannabis but can’t afford a private doctor. The Fentanyl works for me as I am not in bed or screaming and crying because of being in so much pain, plus completely bed bound.
Care should be down to what works. Not what ridiculous rules you can come up with or not reading actual research and instead just reading what you want to read and coming up with rules from that!
This is inhumane care. Cutting out most options that work and replacing them with things that don’t in order to save money! Shocking!
Argggghh when I read this on the news last night I was livid! I understand to some degree the medications that can be purchased OTC, which cost more on prescription. However, the likes of Tramadol are what keep many people, myself including, going each day. It’s the only thing between me and a wheelchair. It’s the only way I can stay somewhat mobile and on an even keel with pain, even though it doesn’t come close to tamping it down enough, so I can do some minimal work from home to earn peanuts. I do worry about them taking it away from those with chronic pain because they’re doing it with other things, such as B12 injections for those with life-threatening pernicious anaemia (I was livid at being told my injections may be taken away for that too!) I think there’s a lot of confusion and judgement with the ‘opioid crisis’. It’s very different treating chronic pain, compared to those ‘addicted’ to opioids who don’t have pain. Great coverage of the subject, you handled it with more poise than I could have done as it would just be one angry rant if I had tried!
Caz xx
It is so worrying isn’t it!
You spend so long finding something that works and they want to take it away and replace it with mindfulness and CBT!
I appreciate the kind words, thank you so much!
Just terrifying! Not just the recommendation, but also that this group apparently doesn’t know the difference between the physical dependence and addiction. Will their next recommendation be to not prescribed beta-blockers and other types of meds that create dependence, too? What about caffeine?? ARGH!
Very scary is it it! Worrying that they think CBT and mindfulness can replace painkillers when pretty much everyone on painkillers has tried other things prior to being on the painkillers!