We held the eleventh in the series of Connect Health Change webinars “Naughty or NICE: Chronic pain guidelines and their implications for the design and delivery of services” on 14 April 2021.
The eagerly awaited release of NICE’s (National Institute of health and Care Excellence) chronic pain guidelines on April 7th faced mixed reactions from pain sufferers and healthcare professionals alike. In Connect Health’s latest Change webinar, leading pain experts hotly debated the study – determining that “hearing the strength of people’s voices in the response to this guideline has been so important”, “some errors had been made in relation to education”, and “one of the main concerns for people living with pain now, because of these guidelines, is that the medicines they are taking or being prescribed will be withdrawn.”
The event was chaired by Christine Price, a passionate influencer on the subject, who has lived with chronic pain for the past 12 years. She welcomed the first guest speaker, Dr Deepak Ravindran, consultant in Pain Management, Royal Berkshire NHS Foundation Trust and the author of The Pain Free Mindset, to cover ‘What is Chronic Primary Pain?’
Dr Ravindran, a consultant for the past 10 years and former anaesthetist, explained how during his medical career he has witnessed patients across every part of their healthcare journey, with many experiencing chronic pain.
Setting the scene on NICE’s two-part guidelines and talking through WHO’s definitions of primary and secondary chronic pain, Dr Ravindran highlighted the advantages of the NICE study and the “alignment worldwide in data, diagnostics, policy and funding, which is raising awareness of pain complexity, social determinants of health/trauma that will inform care”. However, he voiced his concern that “chronic primary pain is not a single entity” and that the “co-existence of both forms of primary pain, as well as missed and delayed diagnoses, the decommissioning of services, and the withdrawal of drugs may not reflect clinical practice and the research base.”
Pushing the message that awareness must be raised amongst GPs, commissioners and patients, Dr Ravindran concluded:
The evidence out there is growing. We now understand this deep link between the nervous and the immune system, when it comes to how pain is perceived, and the role of the protection mechanism and how the brain and the structures around it process these signals. We know how these signals are often going to be impacted by simple nutritional interventions or other strategies like mind-body therapies – yoga or tai chi. I think these all give hope that even if drugs are not going to work for everyone, or interventions may not be suitable for everyone, there are more techniques than just what NICE is right now able to recommend.
Discussing prescribing for chronic pain, Emma Davies Advanced Pharmacist Practitioner in pain management, Cwm Taf Morgannwg University Health Board and co-founder of Live Well with Pain, was the next speaker.
Of concern to me as a practitioner and I think to many people living with pain, Emma explained, was the apparent implication that people currently being prescribed medicines as part of their management for their pain condition, would have them withdrawn or stopped.
Going on to discuss what the guidelines say, Emma highlighted that:
Some antidepressants may be useful, particularly in improving quality of life, sleep and psychological distress and that controversy lies in the long list of things that NICE has suggested shouldn’t be initiated.
When looking at that list, what strikes all of us working out in practice already, is that we probably wouldn’t want to be initiating some of the medicines, such as antipsychotics, under any circumstances. We already know there is a good evidence base of limited benefit but significant evidence of harm for other medicines listed – particularly in long-term use.
Discussing the implications in practice, Emma continued:
What’s really important is that this guideline supports the need for holistic management and for that management to start from the very first appointment. At the moment, pain management services often remain an end of the line option for people, rather than offered right at the start. It would be nice to think that we can use this guideline to promote the need for better, more supportive services in primary care, so that people can access a rounded level of support from the start. That might enable us to move away from the reliance on medicines that we currently have.
There is still going to be a need for medicines, so what we need to do is ensure those being offered are as a trial and that the ones seen to be beneficial are continued to be used, so we can limit any harm to patients.
Cormac Ryan, Professor of Clinical Rehabilitation at Teesside University, and Community Pain Champion for Flippin’ Pain joined the discussion covering the role of pain education. Professor Ryan began by commending NICE’s shift towards a more biopsychological approach and more active physical and psychological therapies, rather than medications and surgeries, but conceded that NICE has “made some errors in respect to education.”
Disagreeing with NICE’s summary: limited evidence showed no clinically important effect of pain education in improving quality of life or psychological distress for people with chronic primary pain, he questioned “why do the NICE guidelines not match the systematic reviews in the field of pain education?”
By excluding evidence from conditions already covered in other NICE guidelines related to painful conditions, such as back pan and osteoarthritis, the majority of the pain education literature was not included, resulting in a narrow and misinformed sample of the relevant scientific literature being used to investigate if education is useful for persistent pain conditions as a whole. Dissecting the two studies NICE used to inform its guidelines,
Prof Ryan went on to explain:
Of those two studies, the first one was published almost 20 years ago and does not use contemporary pain science as its intervention – it includes things like ergonomics and biomechanics, which are just not really part of contemporary pain science education for persistent pain anymore – so it’s already defunct. Therefore, the headline has not been informed by the best evidence – good evidence has been excluded for no good reason.
Professor Ryan concluded:
Most consumers and many healthcare professionals have an inaccurate understanding of the problem of chronic pain and the best treatments available. Pain science education aligns consumers’ understanding of the problem of chronic pain with currently accurate information. To not provide pain education, then, denies consumers of a fundamental tenet of evidence-based practice – that they are informed about the nature of the condition and the best options available to them.
I fear that the headline of ‘pain education is not clinically effective’ is all that people will take from it and is a poor reflection of what the actual evidence is and, I think that the NICE guidelines, in this case, have not got it right.
Discussing active versus passive non-pharmacological management of chronic primary pain was Mike Carpenter, Advanced Practitioner and Developing Consultant Physiotherapist at Connect Health.
Since 2012, the UK Government has cleared that chronic pain is a long-term condition and perhaps we need to look at other long-term conditions as a model of how we can help people in managing it – even if pain reduction or pain relief isn’t the primary aim that we can always look to achieve. That doesn’t mean that pain can’t improve in the longer term, but it may be that we’ve got more tangible, more important targets that we can go after as our initial modifiable factors.
We have hundreds of people with chronic primary pain coming into our service every year – and I hear from those people, time and time again – the pain is part of the story, but it’s all-encompassing. It affects every aspect of their life, it impacts on relationships, on communicating with others, on fitness, on health and wellbeing, on faith, their recreation. There are very few aspects of life that are left untouched by living with chronic primary pain.
My plea is that we try to shift our intention of our management to addressing and helping to change some of the aspects which we know really matter to people. As we can see from the NICE guidelines, we should consider how pain affects people’s lives and use this as a possible aim of intervention.
Trying to achieve this in passive modalities is always going to be limited and this is where I think the value of the promotion of the active approaches suggested in the guideline has real value.
If we want to help somebody to regain a sense of themselves, regain confidence in their body, to be able to feel they can connect socially and engage with activities that they previously enjoyed, that is only possible through rehabilitative mechanisms and that’s where the recommendations to offer exercise and to consider psychological therapies, such as acceptance commitment therapy and cognitive behavioural therapy, have got some real promise.
Victoria Abbott-Fleming, Barrister, Inspirational Speaker and Founder of Burning Nights CRPS Support, Chair of the Patient Voice Committee at the British Pain Society was the final speaker, covering the perspectives of people living with chronic pain.
There is a great fear and worry over these guidelines and some patients are angry that NICE doesn’t understand what chronic pain actually is. Nor do they feel that NICE understands how pain can affect patients. Some felt that it was even ironic that elements of the document supported patient’s rights in shared decision making. Patients have also commented that they feel their rights are being reduced and that their views made known to NICE through patient surveys, such as the ones the British Pain Society have done, simply were not listened to.
The main issue that patients have said is the possible misinterpretation or overzealousness of doctors withdrawing their current medications. The responses that we’re hearing from GPs are comments like, ‘these are only for new patients’ or ‘it would be unethical for me to change your medication’. Many patients find that medication or pharmacological interventions allow them to function in some capacity and they say if they lose their medication, they won’t be able to continue functioning. Some patients have even contemplated suicide if they do end up losing medication or treatment.
Many patients have fought for years to access assessment and treatment options and these guidelines perceive a threat to the range of treatment options available to them. There are no specific guidelines or recommendations for self-management for example, which would be helpful for patients, especially under the flare-up section. Pain management programmes (PMP) too, have also been taken out, but some patients have found PMPs to be extremely helpful, especially in the early parts of their chronic pain journey to help them learn how to manage it. Overall, the guidelines seem too generic, and patients are frightened, worried, and anxious. This needs to be allayed certainly by healthcare professionals.
Despite the abundance of concerns presented during the panel, Chris Barker, a pain physician who was part of the NICE guidelines committee offered optimism, saying:
I think hearing the strength of people’s voices in the response to the guidelines has been so important. As part of the guideline committee, we’re human – whilst there’s a lot of potential misinterpretation of what motives are, we start the committee with the view that we want to improve things for people. Hearing the voices of people who have pain and the concerns they have can only bring out this discussion in a much wider way. I strongly believe this will have a much more positive effect on pain management in the long term.
Quotes from the final question: What is one positive thing we can take away from the new chronic pain guidelines, revealed interesting insight from the experts:
- Dr Ravindran: “To me, we have to be in-line with what the ISP has suggested so at least it starts to get the conversation around primary chronic pain. There will be some heartache while we educate the fellow clinicians and healthcare professionals, but that is something that Cormac has alluded to – we need to get the education out there and we need to raise awareness. I think at least the NICE guideline has brought this conversation out in the open.”
- Emma: “The big thing that I’ve taken from this guideline is the emphasis on being patient-focused and the need to take a whole person approach to pain management – not simply looking at one modality.”
- Cormac: “I think the fact that NICE recognise the importance of good education within the clinical encounter is something worth acknowledging and it’s a good thing.”
- Mike: “My hopes for greater access in the community to pain rehabilitative services and that being much more front-ended. And, this giving it the gravitas to commissioners to consider making that a less patchy access that the Royal College of GPs were concerned about.”
- Victoria: “I think it would be the shared decision making, to make it a shared decision between patient and professional and it’s not just professional-led.”
See the accompanying Q&A summary for links to further reading.