How might the new NICE guidance affect people with chronic pain?

I began writing this post yesterday all about chronic pain after reading about Eamonn Holmes’ battle with it on Twitter (@EamonnHolmes) and in the papers. But when I continued writing it this morning, the headlines were dominated by the newly issued guidance from the National Institute of Health and Care Excellence (NICE). It advised that “Chronic Pain should not be treated by analgesics and patients with chronic pain should be offered exercise, acupuncture and ‘talking therapies’ before analgesics should be prescribed”

Chronic primary pain is defined as “pain with no clear underlying cause or pain (or it’s impact) that is out of proportion to any observable injury or disease that lasts for longer than 12 weeksNICE April 2021

Chronic pain is believed to affect over 8 million people in the U.K. and I can identify with each and every one of them as I have been suffering chronic pain since my spinal fracture 6 years ago.

Since then, I have been on a wide variety of drugs, ranging from the ‘entry level’ Paracetemol and Naproxen to opioid drugs such as Tramadol, Buprenorphine and Pregabalin. I’ve also been involved in 3 different Pain Awareness courses and (luckily) had the support of a very good Pain Management doctor and his team.

But not everyone has had this level of support. I have always counted myself lucky as I had an actual physical cause to my pain; I had a spontaneous fracture of my Sacrum, the large bone at the bottom of your spine which joins the back part of your pelvis together. The fracture caused nerve damage and I have suffered with severe chronic pain ever since.

Now, I have always known what causes my pain and I have a clear diagnosis but so many people have chronic pain with no underlying or obvious reason and this makes life very difficult when trying to access medication.

Having a large amount of pain all the time is bad enough but when you hear about guidance recommending that your access to painkillers may be withdrawn, that is one extremely scary place to be.

I scoured social media to gauge the reaction. I found an absolute outpouring of anger, horror and fear at the prospect of much needed treatment being withdrawn.

On Twitter, I found Dr Francis Ryan, a prominent disabiltyrights campaigner (@drfrancisryan) She says…..

“This is an absolute travesty. People in chronic pain are more than capable of deciding if painkillers help them. CBT and exercise is not a response to agony”

“It would be fantastic if people with chronic pain could take up acupuncture, suitable exercise, and CBT as well as the option of painkillers – except there’s barely any access to these services on the NHS. It’s just cruel to dangle that option, whilst pulling the painkillers”

Princess, The Tower (@apainprincess) added…..

“I just want some relief. I’m not even asking for a “pain free” life… I just want to be able to function… so let me cry. Let me mourn. I know this will pass but today I just need to admit this illness sucks.”

Heather Lacey (@nosuperheroblog) speaks of her experience….

“This article assumes doctors investigate pain…most don’t. Most tell you you’re exaggerating, or that your #ChronicPain is caused by mental illness. Doctors told me for years my #CerebralPalsy pain was growing pain. They told me a spinal curvature of 80°+ shouldn’t hurt…”

Lucy Saxon (@Lucy_Saxon) made a very good point about the involvement of chronic pain sufferers in these new guidelines….

“When medical guidelines start trying to tell everyone that the best ‘cure’ for chronic pain (or chronic illness) is CBT/exercise, all it does is reaffirm the point that literally nobody who experiences chronic pain is being consulted at any point in the creation of the guidelines”

@TerriMe3 asks a very obvious question….

“I keep seeing the statement “#Opioids are the last resort for #ChronicPain management”. My question is WHY can’t these patients, who have tried EVERYTHING else, unsuccessfully, still denied access to these life saving medications?

These statements and questions are all extremely valid; if you are in extreme pain, is it ethical to deny you relief from the torment of intense suffering? And if it is to be denied to you, are the other options as effective?

Rachel Charlton Daily (@RachelCDaily) quips….

“They’re seriously telling chronic pain sufferers “but have you tried yoga?”

Hannah @PipsMiniTwee I think captures the thoughts of many when she says….

“I am actually crying thinking about this. This is going to affect so many ppl (sic) for who pain meds are the only thing that gives any kind of relief, NICE are bas**ards & this does not give me anymore hope for the ME guidelines. I’m so pi**ed off!”

Going full circle to the reason I began this today, I’ll quote the nation’s darling, Eamonn Holmes when he was on Social Media in the middle of the night, looking for other chronic pain sufferers to chat to and connect with – “Honestly folks , talking to you guys helps me forget the pain for 20 minutes. I hope u r talking to each other as well. I’ve felt for all of you suffering from Chronic pain & learned a lot .This is not about whose pain is the worst. This is about finding out how big the problem is

And from what I can see, the problem is HUGE; so many people who are already suffering are very concerned indeed. As I know far too well, in those ‘wee small hours‘, being in pain is a torment, and there are so many others in the same situation.

Let’s hope the new NICE guidance can at last, offer a new perspective on chronic pain and help rather than frighten people. So many, who with a huge range of different conditions, live their lives despite their pain, and to me, that is an amazing achievement.

For more information on these new NICE guidelines, you can find them below.

https://www.nice.org.uk/news/article/nice-recommends-range-of-effective-treatments-for-people-with-chronic-primary-pain-and-calls-on-healthcare-professionals-to-recognise-and-treat-a-person-s-pain-as-valid-and-unique-to-them

2 Replies to “How might the new NICE guidance affect people with chronic pain?”

  1. I probably shouldn’t say much here as I don’t trust myself. I think you’ve done brilliant with this post and capturing a snapshot of other responses. Like you, I have pain where I know the cause (nerve damage). I also have pain with no identifiable cause (fibromyalgia). It’s the former I take daily Tramadol for. If someone tells me to try acupuncture, deep breathing or mindfulness I think I’d lose the plot entirely. I was always hesitant about pain medications like these… UNTIL chronic pain affected me and I needed them as a last resort to live. The problem with these big decisions being made is that they’re being made by people without a clue what chronic pain is like and who won’t be hurt by the fallout.

    I provided feedback to NICE on their proposals, I wrote to my MP, I wrote to the NHS. I know many others did too. Looks like it all fell on deaf ears. It’s sadly not melodramatic to say this could be a death sentence for many people. xx

    Liked by 1 person

    1. I have to say I agree with everything that you’ve said here. I did the same, I wrote to my MP, everything, not that it did anything obviously. It’s going to make life so very difficult for millions of people, it’s shocking.
      My old GP put it into perspective for me when I was first put on these meds & I was worried about addiction “you’re not addicted, you’re a regular user” and that made the world of difference to me. Wish she’d been on this committee…..🥺

      Liked by 1 person

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