Why the NICE guidance on chronic primary pain needs to change

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Why the NICE guidance on chronic primary pain needs to change

Opinion by Claire Swain, a Chronic Pain Advocate and founder of the Chronic Pain Campaign. In this article, the author argues that the new UK NICE guidance on chronic primary pain needs to change because it fails to consider the needs of people with chronic primary pain. As a result of the new guidance, people will experience chronic pain that is both devastating and disabling.

The pain is throbbing down my entire spine, electric shocks shoot down my legs, the sweat drips from my forehead and trickles down my pulsating neck. I have been lying here for weeks, the odor from my body is revolting, and the rumble in my stomach is becoming an ache. My eyes are bloodshot red, my cheeks are swollen, and my pillow is soaked from my despair. The ring of telephone continues to drill through my ear, more warnings of overdue payments and a manager’s angry tone at me no longer being there. The flicker of the Christmas lights shines through the corridor, a festive tune jingles to spread joy, but my heart feels like it will hurt forever.

I lost everything. My home, numerous friendships, my passions, my goals, my career that I put my entire being into, and my overall independence. I have suffered from chronic pain for fourteen years (amongst other health conditions). Continually fighting my body to achieve and having to battle with health/medical professionals for effective pain relief to enable me to function. Yet, it was on that Christmas described above that my body could not cope any longer. The doctors in my hometown would not help me. Still, I was lucky that my now-husband welcomed me into his home. I was able to see a doctor in Leicestershire who supported me with a referral to a specialist neurologist and a prescription for stronger pain medication. This has not cured me but has enabled me to have some quality of life. Instead of spending my entire life in bed, I can now communicate with my loved ones and engage in some activities that are meaningful to me.

Over a third of the population suffers from chronic pain which is highly stigmatized1. Most people in society, including health professionals, struggle to comprehend that an individual can be in severe pain twenty-four hours a day, seven days a week. Chronic pain is devastating, disabling and countless people cannot work due to the severity.  The British Pain Society reports that the treatment of pain is a human right. Yet, there is a massive gap between the needs of patients and what happens in practice.

However, the UK’s National Institute for Health and Care Excellence (NICE) published cruel guidelines for Chronic Pain Patients in April 20212. I have been campaigning against these barbaric changes for over 18 months (I began when the changes were in the proposal stages).

'As a result of the new UK NICE guidance on chronic primary pain, people will experience chronic pain that is both devastating and disabling.' Claire Swain #ChronicPainisNotNICE Click To Tweet

NICE only approves acupuncture, cognitive behavior therapy, acceptance therapy, exercise, and anti-depressants. NICE no longer approves vital pain relief medication and treatments that many chronic pain patients need to function3. Dr. Rajesh Munglani, who is a pain consultant and a member of the British Pain Society, states that many chronic pain patients rely on medication that is no longer approved by NICE for any quality of life. He also says that removing pain medication from those in desperate need is a cruel health policy.4

“I find it difficult to accept the NICE guidelines, which categorically state, “Do not offer this or that treatment.” None of us as doctors or scientists can say that. Each patient is unique and their pain is unique.”

Dr Rajesh Munglani


The guidelines are for primary chronic pain patients, which is awful in itself. However, as the Faculty of Pain Medicine5 states, there is a real risk that the new NICE guidelines will be used for a large number of people, including those with different identifiable causes of pain6. And primary chronic pain patients who subsequently develop secondary chronic pain will neither be recognized nor treated appropriately.

In my communications with NICE, they report that health and medical professionals do not have to follow the guidelines.  And that there is a lack of evidence to support the medications and treatments they no longer endorse. Yet, Pain Concern  and The Faculty of Pain Medicine state that NICE “guidance is based upon crafted-together evidence rather than scientifically-strong evidence.” Also, I was previously a health professional, and I am aware that the NICE guidelines are seen as the gold standard. Therefore, many health professionals are reluctant not to follow the guidelines in case of possible repercussions such as a medical negligence claim. In addition, health and medical professionals are under severe pressure in hectic environments. It is, therefore, improbable they will have time to analyze every reference used.

Why the NICE guidance on chronic primary pain needs to change Click To Tweet

Over the last few months, many chronic pain patients have contacted me, reporting how distressed they are over the changes. Some have even mentioned feeling suicidal over the changes.

Please help us fight this NICE cruelty.

After numerous rejections, I have recently launched a parliamentary petition, which needs one hundred thousand signatures for the cause to be debated in parliament (by 9th March 2022). The petition calls upon the UK Parliament to review the NICE Review Guidelines on Chronic Pain (Published April 2021) taking into account evidence and statements provided by relevant stakeholders and campaign groups.

For more information, please visit my original petition (with over thirty-seven thousand signatures) at Change.org or my Instagram page @clairebearmelmel.

Article by
Claire Swain

Claire Swain is a Chronic Pain Advocate. She is the leader and founder of the Chronic Pain Campaign (Stop the Cruel Changes to Chronic Pain NICE Guidelines). For more information on the campaign please visit Change.org


As a result of the new UK NICE guidance on chronic primary pain, people will experience chronic pain that is both devastating and disabling.