NICE Guidelines on Chronic Pain Treatments - Victoria Bartle
Over the last couple of years, NICE (the National Institute for Health and Care Excellence) have updated or planned the publication of a range of guidelines on chronic pain treatments. But why has there been such a focus in this area at this time?’
In Sept 2019 the NICE (National Institute for Health and Care Excellence) guidelines for chronic pain treatment were updated for the first time in two years. They are also working on developing guidelines around diagnosis and ongoing management of chronic pain conditions, due to be published in January 2021, and guidance for the safe withdrawal of prescribed medications which have caused dependance and withdrawal symptoms, which is expected to publish in November 2021. In the interim, however, medical professionals have access to the NICE guidance on prescribing controlled drugs. (Although these have not been updated since their initial publication in 2016) and the draft Chronic Pain Treatment guidelines
This new focus on chronic pain may have something to do with the highly publicised opioid crisis that is continuing to cause harm both in the US and the UK. Between 1998 and 2018 we saw a huge increase in prescribing opioids for chronic pain conditions in both countries, with huge numbers of patients developing addictions and, sadly, many dying due to the compulsion to misuse these highly addictive drugs.
In February 2019, The Times reported that five people were dying from prescription drug overdoses every day in the UK, with a total of 91,000 dying over the previous two years.. This huge number of potentially avoidable deaths is a tragic situation, with many believing that some of these deaths could have been prevented with more stringent prescribing. This has led to doctors being blamed in the media for prescribing opioids to combat chronic pain with little to no follow-up, and without alternative methods of pain management being offered. It is clear that robust plans need to be put in place to ensure that people aren’t continuing to suffer, not just with chronic pain conditions, but also with prescription drug addiction which carries risks of overdose and, tragically, death.
What is chronic pain?
Chronic pain is defined in the UK as pain which lasts for more than three months, and there have been a number of studies that evidence just how many people are affected by chronic pain conditions. In a recent study researchers came to the conclusion in that around 43% of the UK population are affected by chronic pain, with approximately 14% experiencing severe or moderately severe debilitating effects from it. According to the 2012 census the NHS had 461 pain specialists with 319 referrals each per year. This implies that there are over 166,000 new referrals to chronic pain specialists every year in the UK alone demonstrating the sheer scale of the problem and the term covers such a wide variety of types of pain conditions (from fibromyalgia, neuropathic pain and migraines to lower back pain, arthritis and MS) that you can imagine why doctors would find it a challenge to prescribe, treat and manage an individual coming to them with chronic pain.
After the first English pain summit was held in 2011 a study was commissioned to collate and investigate previous studies looking at pain and after reviewing 19 UK studies from 1990 onwards, they came up with a number of conclusions including showing that chronic pain is more prevalent in women than men and tends to also increase with age. One of the authors of the study, Alan Fayaz, noted: “Chronic pain is costly at an individual and societal level; in the USA direct and indirect healthcare costs attributable to chronic pain outstrip those of cancer and cardiovascular diseases combined, and yet it doesn't have as high a profile. There is a reluctance to talk about pain because it isn't as visible or tangible as other conditions, even though it may have a devastating impact on quality of life. I think The Government needs to work with organisations like the British Pain Society to challenge these conceptions, much in the way they have done with mental health.”
Indeed, with chronic pain being an invisible condition there is a stigma regarding it, both society in general, as well as medical professionals, which often causes patients great distress, anxiety and ongoing battles with friends, family and doctors as they try to get a diagnosis, treatment and support for their conditions.
Prescription drug use in North East England
The treatment and guidance around prescription painkillers for chronic pain is something I am very interested in. I have been taking controlled drugs, opioids and various painkillers for over 14 years due to my ongoing health conditions which include chronic pain as a symptom. With chronic pain conditions being prevalent in the North East (where I live) due in part to various demographics and socioeconomic factors, I was interested to read an article published recently in The Times stating that the North East of England is the capital of painkiller use in the UK. Sunderland shows huge numbers of prescriptions for codeine and tramadol, both of which are opioids and controlled drugs. In October 2019, Sunderland local authority delivered a public health campaign to raise awareness of the issue and attempt to reduce the number of potentially harmful prescriptions being written. The aim here was to reduce the numbers of people becoming reliant on these drugs, developing addictions or risking the dangers of withdrawal. This campaign saw a 30% drop in prescriptions over six months from October as health chiefs worked with local GP’s to better identify and support people to manage pain in different ways and reduce dependance on prescription painkillers.
The evolution of opioid prescribing
Previously, opioids have been prescribed to patients with chronic pain by following the WHO’s ‘analgesic ladder’ which focuses on treating pain caused by cancer in the late stages of a person’s life. This is achieved by gradually increasing the strength of the painkiller as the patient’s pain increases. While this works well in palliative care cases, there has been very little research into non-cancer related pain and how to manage chronic pain in the long term. It’s therefore easy to understand how doctors believed they were doing the right thing by prescribing more and more painkillers as the patient’s pain increased. Today, however, we can see the flaws in this methodology as research has shown that painkillers can become ineffective over time, and dependance and addiction develops in patients while they continue to experience pain which cannot be controlled by the medications that they are being given. The NICE report states that the benefits of opioids on chronic pain are minimal at best, with the recommendations being to take people off them if they are still experiencing pain. It states that only a small proportion of patients will experience any benefit from taking opioids for pain management, and that this is when doses are kept low and are not taken constantly for long periods of time..
My experience of pain management
My own experience followed the WHO analgesic ladder approach for pain management with me starting on paracetamol and Gabapentin for joint pain 14 years ago. As my conditions deteriorated and my pain levels increased, I had Duloxetine and codeine added over the course of about five years. But as the pain still continued to increase, I was swapped from Gabapentin to Pregabalin (a similar medication for neuropathic pain) which helped temporarily, until I ended up having Fentanyl and morphine added to my daily pain relief. This is a huge amount of both opioid and neuropathic medications, which can all cause dependance and severe side effects, and yet I was still in lots of pain and struggling to manage my daily life to the extent that I had to move house as I couldn’t manage stairs and ultimately had to stop working due to my increasing disability. The pain affected every aspect of my life. I couldn’t cut my own food, lift anything heavier than child's cutlery and was unable to walk more than a couple of steps unaided.
At its worst, I became severely depressed and struggled to envisage a fulfilling life with these limitations and my constant debilitating pain. I spoke to my GP who referred me to the specialist pain clinic at the RVI (Royal Victoria Infirmary) where they look at pain in a much more holistic manner. The consultant I saw in 2016 followed the NICE guidelines to the letter.. He asked questions about the impact my pain and the treatment were having on my life, discussed what had worked in the past and where we were now. He also made it clear that there wasn’t a cure, and any treatment may or may not actually work, so I had to be patient and realistic about what was going to happen. He also included my Mum in the conversation as I had brought her with me to the appointment. My family had become increasingly concerned about my levels of pain, my ability to function, and how much medication I was on, so my Mum came with me to get an idea of what they could do to support me, and what the reality of the situation was. Throughout my illness my family have always supported, believed me and tried to help as much as they can. This isn’t always the case and I have a number of friends who continue to struggle with family and friends simply not believing that they are in pain. If you haven’t experienced continual pain for years on end it is a very unusual thing to try and comprehend. I was visibly struggling to do the day to day ‘normal’ tasks so people around me could see how it was affecting me, but now that I’m more able to carry out these tasks I do wonder if people that I meet would instinctively know that I’m in pain all of the time as I look ‘fine’. Having family and friends who understand, or at least try to, has made a massive impact on my overall wellbeing as I have been able to be open and honest with them, ask for help and receive it when necessary, and also feel cared for and looked after when I was at my worst. This ongoing support helps me get through the tough times and manage my mental health as well as the physical aspects of chronic pain.
The guidelines on pain management
The overall advice to medical professionals in the guidelines for treatment and the draft plans for consultations is easily understandable if you stick to the initial report, however, there are so many links to related guidance and plans that you can end up down a rabbit hole of information. The guidelines place an emphasis on not dis-regarding the patient’s pain in the case of negative or inconclusive results from tests as this adds to the distress caused by stigma The advice recommends that patients are spoken to openly about results, treatments and prognosis to ensure they feel that they are being treated as an individual who is listened to and supported. Options should be explained in depth to make sure the patient is aware of what the future will look like and can make informed decisions about their personal care plans.
The overarching message of the guidelines is to encourage medical professionals to look at the patient’s quality of life more holistically and not necessarily focusing solely on reducing pain levels due to the limitations and lack of effectiveness of painkillers. They also encourage a more holistic approach to pain reduction, looking beyond the strongest opioids and considering the full range of treatments - including alternative therapies which can be tried to provide some relief. The pain clinic, at the RVI is one of only a handful of specialist pain units across the country and they follow this approach to pain management. The physiotherapist and psychologist at the RVI deliver a pain management workshop to small groups of patients that goes through all of the recommended treatments and explains how to integrate them into daily life, showing the benefits of a sustained commitment to the programme. They also incorporate experts by experience, inviting former patients to speak to the group about their experiences. They also include a talk from a volunteering agency to support patients in their steps back into independence, encouraging a gentle and safe return to work.
Alternative treatments and therapies
The main focus for alternative treatments is built around ACT (Acceptance and Commitment Therapy), CBT (Cognitive Behavioural Therapy), acupuncture and exercise which are therapies that have been found to be beneficial in treating chronic pain symptoms, as well as increasing the quality of life for patients.
These therapies involve some of the following:
Mindfulness and meditation are key elements of ACT and I’ve personally found that they do help to calm my mind and relax my body which has a positive impact on my pain. The theory is that if you can relax and stop your nervous system from remaining in fight or flight mode you can reduce your pain levels as your body relaxes and the nervous system moves from the sympathetic system (fight or flight mode) into the parasympathetic system. This promotes relaxation and reparation of the body. This kind of therapy involves coming to terms with the pain, living in the moment and accepting limitations, using distraction techniques to avoid focusing on the pain, but also establishing your values, setting goals and achieving things in life which can add to levels of wellbeing and fulfilment. I participated in a course through the pain management clinic which focused on ACT and found it extremely beneficial to my life, my pain levels and my mental health. I respond very well to goal setting, achievements, rewards and focusing on behaviours which link to my values. I continue to use this method of planning and managing my life and feel as if It’s helped me move forward, achieve goals and be a valuable member of society even despite the pain and other health issues I live with.
CBT focuses on Identifying and impacting your cognitive thoughts and decisions and the behaviours that stem from them can be used in pain management by learning to look at the pain in a positive way, as well as developing strategies to support the patient to making better choices about their life, sticking to treatments and behaviours which provide benefits, and helps them to live with the pain. I’ve had CBT, but although it didn’t help with my pain management, it did have benefits to my life in general as well as improving my mental health.
Acupuncture is also a complimentary therapy that has shown positive results in pain management research. I’ve had many sessions of traditional acupuncture, as well as taking part in a trial into the effects of aural acupuncture (acupuncture on the ears) on pain levels and I found that both were beneficial, but only for a short period of time. At the most I’d experience some relief for a day or two after the treatment, but it was never sustained so this isn’t something that I continue with anymore.
TENS machines (electric pulse machines to target areas of pain) were not advised as a specific treatment for pain management as limited benefits were found in the research quoted. However, I find that it does help me a bit when my pain is really bad, but I don’t use it very often. TENS machines are good for me when I’m due to sit for long periods, such as when I fly, as I’m prone to increased pain from sitting and it helps me to get through the flight and the airport without needing the rest of my holiday to recover back to my usual pain levels.
Manual therapy/Massage and physiotherapy is recommended for further research. I’ve found that massage does help me, but it isn’t a long-term solution as the effects only last between a few hours and a few days and it’s too expensive to have a massage every day. It is also physically draining to have a massage and I usually feel a little more fatigued afterwards before I feel the pain benefits, but I do really enjoy the relaxation aspect of having a massage and try to have one every month.
The report advises not to use painkillers, opioids, gabapentoids, anti-inflammatory drugs. Instead, is suggests relevant medications might be. anti-depressants such as duloxetine, citalopram and sertraline which can all help with pain, as well as the depression that often occurs alongside a chronic pain condition. I’ve been on anti-depressants for pain relief and depression management, and I feel that as long as it is approached with care, recognising that the patient may have experienced the stigma that the pain is all in their mind, and emphasising that it’s being used as both a pain treatment, as well as having the benefit of treating any depression that may be being experienced it can be really beneficial. If a patient is already on any of these medications, they recommend advising a reduction, or total withdrawal of the medications and then trying. other methods in isolation to see what benefits are provided. This is because people respond to different kinds of antidepressants in different ways. The other benefit of antidepressants in pain management is that they do not carry the same risks around dependency and addiction.
Withdrawing from pain medications
After speaking with the consultant at the pain clinic we decided that coming off all of the pain medications that I was on was the best option for me. I had a very low quality of life and couldn’t see a way to move forward, so it seemed to be the most sensible plan to reduce my reliance on the painkillers which weren’t actually reducing my pain. After advice from the consultant my GP managed my withdrawal and I think that he did a really good job. (NB: guidance on withdrawal methods hasn’t been written yet, it’s due to be published at the end of 2021) It took about 18 months of slowly reducing my medications one at a time and physically and emotionally it was one of the worst times of my life. The side effects from stopping Pregabalin were the worst and I found myself experiencing terrifying nightmares, sweats and horrendous increased pain and fatigue levels. Coming off Duloxetine was more straight forward as I actually felt better than I’d done in years for about a month – that was until I started to reduce the codeine which caused more problems as my body attempted to adjust to the reduction. Once I’d removed the Morphine, Fentanyl, Pregabalin, Duloxetine and Codeine from my daily medications I realised that I didn’t actually feel any worse than I had when I was on them all, so they obviously hadn’t been helping me at all. However, the pain was still continual and affected all aspects of my life. I still couldn’t manage much myself and was existing rather than living. I started taking a low dose of tramadol almost 2 years ago and after 6 months found myself to be improving. I’ve been pretty stable since then, I can manage most of my self-care myself, (with aids) my mobility has improved from me struggling to get around my flat, to me being able to be confident that I will always be able to get to my car from the house whenever I want to.
The change in my quality of life since removing the majority of my pain medications has been dramatic. I still use the advice and guidance from the pain programme to help me manage my conditions the best that I can.
I hope that the NICE draft guidelines for consultations get approved quickly so that training can be provided for pain specialists and so increasing amounts of funding are put into establishing clinics like the one at the RVI. I’d love to see more people, like me, who are living with chronic pain. getting the same high level of support, treatment and advice that I received.
There is a lot of advice in the guidelines on which areas to carry out research for in the future so I’m hopeful that these will get picked up. The ultimate goal of developing treatment plans for the huge numbers of us living with chronic pain, as currently all we have are methods for living with it, and very little available which actually controls or reduces it.