Chronic pain guidelines make me feel like relieving my agony is considered a waste of money

Opinion Piece by Chris Bridgeford Chairman of Affa Sair, a charity helping people living with chronic pain.

There was great consternation and fear among the 1.09 million chronic pain sufferers in Scotland recently when NICE (National Institute for Clinical Excellence) released their new guidelines for dealing with chronic pain.

Chronic pain (This link will take you away from our website) is classed as pain which lasts longer than three months. Headlines of various newspapers and magazines screamed that chronic pain sufferers were no longer to be given any painkillers but were being told to exercise and self-manage their pain instead.

For once, the headlines were actually spot on. NICE have indeed come up with guidelines that leave chronic pain sufferers in permanent agony. The better news for those of them living in Scotland is that the NICE guidelines (This link will take you away from our website) do not apply here, so many of the fears among this already poorly treated section of the community are unwarranted.

When the media speak of the “UK”, they invariably mean England. It’s a sad fact of life on the island we share that this error is never corrected or even given a second’s thought. Since 1999 with the formation of the Scottish Parliament and devolution, some of the most important aspects of our lives, such as health and education, are no longer under Westminster’s power.

SIGN versus NICE

In Scotland, SIGN (Scottish Intercollegiate Guidelines Network) produce the guidelines for medical treatment (This link will take you away from our website). SIGN 136 is their guideline for specifically dealing with chronic pain. Every pain consultant, health professional, physiotherapist or nurse work under the SIGN guidelines and should not take heed of the NICE guidelines. Only where SIGN have no guidelines on a subject should the NICE guidelines be taken into account.

So, how different are the guidelines?

For a start there is a subtle but telling difference in the intent of both. SIGN emphasise that “the ultimate judgement must be made by the appropriate healthcare professional(s) responsible for clinical decisions regarding a particular clinical procedure or treatment plan.” However, NICE clearly state: “When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account.”

The message I get from the NICE guidelines is simply not to treat chronic pain sufferers, as there is no cure and money will just be wasted

On comparing both documents my impression, as a chronic pain sufferer of 43 years, is that the NICE guidelines are far more imperious than the SIGN equivalent.

Both stress the need for a person-centred assessment to find what contributes to the pain and how it affects the individual’s life. SIGN 136 goes on to stress that “a compassionate, patient-centred approach to assessment and management of chronic pain is likely to optimise the therapeutic environment and improve the chances of successful outcome.” In other words, listen to the patient – something my own GP often says but which, sadly, many patients report just doesn’t happen.

Budgets get in the way of compassion

For me, the different ways in which each list of guidelines deals with the pharmacological management of chronic pain is telling. Though NICE strongly advocate that chronic pain sufferers not be given any painkillers (even
paracetamol) to help with their devastating levels of pain, SIGN 136 recognises that the use of strong opioids, NSAIDs, paracetamol, and lidocaine can be considered.

Watch the mystery of chronic pain by Elliot Krane video.

There are caveats of course, but they seem very sensible to me. For instance, if the painkiller does not cause a reduction in the pain it should be stopped. Nothing wrong with that, as long as it is the patient who decides whether or not there has been a reduction in pain levels.

“The message I get from the NICE guidelines is simply not to treat chronic pain sufferers, as there is no cure and money will just be wasted”

SIGN 136 has a more compassionate approach, recognising that, although there is no cure for many chronic pain conditions, a reduction in someone’s suffering is a good thing and should be the aim of the treatment. It’s hard to believe that anyone would think otherwise, but in the real world those in charge of budgets don’t use compassion to balance the books. It is clearly felt that having to repeat a pain treatment over and over means it shouldn’t be used. Why?

Denied treatment that relieves pain due to cost

There are many other conditions which need treatments to be repeated time after time, yet in the case of acupuncture, both sets of guidelines see no benefit in using it long term.

I can vouch for the fact that acupuncture does indeed work and reduces my pain greatly. It only lasts for a week or so, but for someone like me, that week gives me an escape from the endless torture. Knowing my condition will last until the day I die, I see no reason to only have one good week in my (hopefully) normal life span.

“It’s a sad and unacceptable situation when a condition that affects a fifth of the population is not given proper consideration or resources”

The NICE guidelines go so far as to say acupuncture should be “made up of no more than five hours of Band 7 healthcare professional time or is delivered by another healthcare professional with appropriate training and/or in another setting, for equivalent or lower cost.”

Clearly the important factor here for NICE is the cost to the NHS. What about reducing suffering, or is patient welfare low down on the list of considerations? It smacks of a wish for private healthcare.

Everything in moderation is best approach

Exercise and exercise therapies are also recommend in the SIGN guidelines but, importantly, not to the exclusion of help from pain-reducing medicine.

After all this time in chronic pain, I know it is not good for me to sit in a chair or lie in a bed all day. There are times when I need to do that, but moving around stops my connective tissue seizing up and causing even more pain when I do have to move. I can also vouch that trying to become a gym bunny doesn’t reduce the neuropathic pain, nor does losing weight.

However, as the chronic pain sufferer will invariably pick up other conditions along the way, it is best not to get into the trap of lying there, moaning and groaning all the time. Everything in moderation is the best way to survive this cruel, pain-filled life.

“Do you ever feel like life is a marathon that you can never reach the finishing line? This is what chronic pain sufferers feel like every day pic.twitter.com/hsHbhTWCGa “

— Affa Sair (@affasair) April 30, 2021

 One other method of reducing the pain that I and many other sufferers use is called TENS, or transcutaneous electrical nerve stimulation. These devices emit electrical pulses through pads placed on the skin which scramble the pain signals reaching the brain.

SIGN 136 recommends this treatment. NICE bluntly state: “Do not offer TENS to people aged 16 years and over to manage chronic primary pain because there is no evidence of benefit.”

More awareness is urgently needed

It is worrying to hear of instances where less senior and newly trained health professionals seem to put so much sway on the more widely reported NICE guidelines.

Clearly the Scottish Government and health bodies need to promote the SIGN guidelines far more than they do. Yes, there are pamphlets and websites available, but unless people are made aware, the information will lie on a shelf collecting dust or lost in the myriad of information that is cyberspace.

It’s hardly conducive to a good relationship with your doctor if you have to take the SIGN 136 guidelines to every consultation.

Ultimately, it’s a sad and unacceptable situation when a condition that affects a fifth of the population is not given proper consideration or resources from health managers or politicians. It effectively gives those in intractable pain the choice of being curled up in agony every day or paying for private health care.

If you are struggling with chronic pain, there is guidance and support available on the Affa Sair website (This link will take you away from our website)

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