Not so NICE – Chronic Primary Pain Guidelines Advise No Painkillers for Patients. Guest Article by Jennifer Bough

Not So NICE – Chronic Primary Pain Guidelines Advise No Painkillers for Patients

New and existing patients with chronic primary pain conditions will be steered towards antidepressants, acupuncture, and group exercise classes.

In August 2020, the National Institute for Health and Care Excellence (NICE) released its draft recommendations for new chronic primary patients. The draft recommends that patients with chronic primary pain should be offered supervised group exercise classes, certain types of psychological therapy, or acupuncture, instead of painkillers. The guidelines, in their limited literature review, found there was little to no evidence that painkillers worked, and could do more harm than good for pain patients.

The recommendations on chronic primary pain — i.e. pain that recurs for longer than three months, causes significant emotional distress/significant functional disability, and cannot be explained by another chronic pain condition — will see patients steered away from the following existing treatments: biofeedback, TENS, ultrasound, interferential therapy, opioids, non-steroidal anti-inflammatory drugs, benzodiazepines, anti-epileptic drugs including gabapentinoids, local anaesthetics, by any route, local anaesthetic/corticosteroid combinations, paracetamol, ketamine, corticosteroids, and manual therapy.

This move would affect patients with the following chronic primary pain conditions including fibromyalgia; complex regional pain syndrome; chronic primary headache and orofacial pain, including chronic migraine or temporomandibular disorder; chronic primary visceral pain, such as irritable bowel syndrome; and chronic primary musculoskeletal pain, such as nonspecific low-back pain.

A systematic review conducted in 2016 found that “almost half of UK adults may be living with chronic pain” and almost half of those diagnosed have a diagnosis of chronic depression, and two-thirds can’t work outside their homes. These recommendations are in favour of moving pain patients from one set of drugs (painkillers) to another (antidepressants). Patients who are already mentally suffering, and most likely on some type of antidepressant already, will have another aid removed from their toolbox. 

I am one of the UK adults living with chronic pain and am writing this post from my bed, after a long week of working interspersed with brain fogs and fatigue. I have fibromyalgia and endometriosis meaning, like many of us with these conditions, I never quite know when I’m going to spend the day horizontal, or if my energy will hold up for essential daily activities. Chronic pain conditions often mean flexibility becomes second nature, as pain causes things to be rearranged, from socialising and supermarkets journeys to basic tasks, like taking a shower. 

A lack of certainty characterises many, if not all, chronic primary conditions, in terms of symptoms and treatment. Fibromyalgia, for example, is often diagnosed through a process of elimination and is difficult to manage. I advocated for myself, having read up on causes, symptoms, possible treatment plans, and pharmacological aids. Luckily, I have been on antidepressants for years, so this wasn’t the primary course of treatment recommended to me. After being diagnosed by two rheumatologists, one of whom offered me a leaflet and advised yoga, I felt very much left alone to manage my new-found condition. From my research, and the connections I had made online, I knew what tools to look for to help maintain mobility and what type of therapy would be helpful. Not everyone has these tools at their disposal. 

This is why so many of us are worried about the implications of NICE’s guidelines. If the draft is approved, new (and existing) patients could be steered away from painkillers and moved toward treating chronic primary pain as a mental health problem rather than a physical one. The British Pain Society warned not only of the confusion around the terms “chronic pain” and “chronic primary pain,” the latter of which is a relatively new term, but that the blanket diagnostic labelling of patients or “indiscriminate withdrawal of pain treatments therapy to be unhelpful and potentially harmful”. This move, the Society said, could “lead to unnecessary distress and suffering in [a] large number of chronic pain patients in the British population”.

I have had several conversations this week with chronic pain patients (primary and secondary) who are deeply concerned by the recommendations and the implications for their treatment. So, I wrote this open letter to NICE, which I will send off before 5pm today (14th September) in response to their consultation.

Please sign the letter, as a patient or an ally, by opening this link, scrolling to the bottom of the page and adding your name. 

The above article was written by Jennifer Bough exclusively for Still Ill OK. You can follow Jennifer and her hard work on this campaign on Twitter @Jennifer_Brough

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