Naughty or NICE: Chronic pain guidelines and their implications for the design and delivery of services – Q&A Summary
Webinar Blog and Q&A summary, 14 Apr 12:30-13:45
Connect Health “Change” brings you the eleventh in a series of webinars to make and embed transformation in healthcare. Aimed at system leaders and clinicians across the NHS, the webinars provide practical solutions to the challenging issues we are all grappling with.
Our webinar involving change experts, system leaders, commissioners and academics debated what are the essential elements to service redesign.
This information sharing webinar sparked debate around how patients, purchasers and providers of health care services benefit from NICE guidance and the implications of the NICE Chronic Pain Guidelines.
The final guidelines could impact on the provision of services for people with chronic pain and therefore this webinar will be of relevance to anyone involved in the commissioning or delivery of services for people with chronic pain.
This webinar encompassed the following aspects:
- Review of the guideline scope and its importance to translating recommendations
- Areas of significance from the NICE chronic pain guidelines on patients, providers and commissioners
- Practical, real-world impact for stakeholders: how might the guidance translate to practice?
- Perspectives of the person living with pain. What the guidelines mean to them?
- System leaders/Commissioners – Interpreting the guidelines in the practical world, moving to a community model
- Range of speakers from different perspectives. Respectful challenge to the evidence base that NICE had. That it was chaired by person with lived experience of chronic pain.
- Honesty of speakers, having speakers with a lived experience of Chronic Pain, speakers being able to back up their positions and sharing their knowledge with us.
- Short and concise segments.
- Great overview of the new guidelines and insights from the experts in the field.
- Very specific and direct and no ‘waffling’ – questions answered quickly and also the ability to replay the webinar and access other people’s info/websites.
- informative, to the point, breadth of coverage from different clinicians, and… CHAIRED BY AN EXPERT PATIENT. Fantastic!
Watch the Webinar in Full
Christine Price, person with lived experience of persistent pain – introduction from the Chair
Dr Deepak Ravindran, Consultant in Pain Management, Royal Berkshire NHS Foundation Trust & author of The Pain Free Mindset
Question 1: In your opinion, are there other ways of managing Chronic Primary Pain if NICE is only suggesting exercise and acupuncture with some psychological techniques?
Answer: The reality is that NICE has got its constraints on how it looks at evidence, how it is supposed to come out with recommendations and the language sometimes they say is often very didactic, ‘do not offer, do not do this’. It often leaves people thinking that something is being rejected or not being done. There is a nuance in this, in that when it comes to any form of chronic pain and with primary pain, we may say ‘well it could become relevant’. We may have new technologies, or new ways of investigating and finding out it was never after all unclear that there is a clearer pathology, For the time being, what NICE are unable to say but the evidence out there is growing, is an understanding this deep link between the nervous and the immune system when it comes to how pain is perceived. The role of the protection mechanism; how the brain and the structures around it process these signals. Also, how these signals are often going to be impacted by simple nutritional interventions. Strategies like mind-body therapies, such as yoga or tai chi – which could have neuro scientifically, a way of re-wiring, talking about neuroplasticity and how that can be brought in. All of these examples give hope that, even if drugs are not going to work in everyone or interventions may not be suitable for everyone, there are more techniques than just what NICE, are able to recommend right now.
Question 2: Patients with Angioedema suffering from pain during flare-ups happening every 2 days, mostly on morphine high doses. Is this Primary or Secondary Chronic Pain or a combination? Could you also just briefly explain what angioedema is for those of us that really don’t know?
Answer: My understanding of the pain around Angioedema – Angioedema is a rare kind of condition, which can be often hereditary. It is a condition in which there is a reduction in the amount of one of the parts of the immune system, called the C3 – which is in complement. When that amount is reduced, there is a risk in certain people, that there will be an over activation of the immune system. This can lead to a swelling usually in the airways but you can then have that same component of over activation of the immune system, resulting in pain in other parts of the body.
To me, this would be classified right now, because the actual physiology is a little better understood. I would be calling this secondary pain because we understand where the problem is. We know that some of the drugs that are around, do not effectively work for the pain component, they may reduce the complaint but not the pain. This would be a Chronic Secondary Pain, we can try some of the existing medications but as Emma pointed out, every medication that is available in the market for pain, works 30-40% of the time, at best. Therefore, to the person who has Angioedema, they would also have to look at other ways of finding out other techniques to calm the immune and nervous system down. That might sound very easy for me to say and it’s obviously very difficult to do but we are faced with the fact that, the drugs we have, are not that effective.
However as far as this person is concerned, it is a secondary pain, it’s something that can be discussed with the GP, pharmacist or a specialist, to decide what can be done. It should be shared decision-making, to work through the principles and medications to see which may give some benefit.
Question 3: What is mind-body exercise? Aren’t all types of exercises working on mind and body? Do we need to be careful not to promote certain types of exercises over others? Football, weightlifting, dancing, gardening and hiking are also mind-body and may be more in line with patients’ preferences?
Answer: Agree, no clear definition of mind-body. In the NICE Low back pain guideline, this specifically referred to yoga and Tai Chi. However, you are right, any physical activity is likely to be helpful for people with chronic pain. Most people with severe chronic pain are the least active and even a small increase in activity has significant health benefits, beyond pain, which is why this is a strong recommendation in the guideline.
Question 4: What is the one positive thing we can take from the new NICE: Chronic Pain Guidelines?
Answer: We have to be in line with what the ISPS suggested, it starts to get the conversation around Chronic Primary Pain going. There will be some heartache while we educate the fellow clinicians and healthcare professionals – something that Cormac has alluded to. We need to get the education out, to raise awareness and at least the NICE guideline has brought this conversation out in the open.
Emma Davies, Advanced Pharmacist Practitioner in pain management, Cwm Taf Morgannwg University Health Board and co-founder of Live Well with Pain
Question 1: What do you think the biggest risks are in terms of how commissioners and/or healthcare professionals might interpret these guidelines?
Answer: I think the concern that there will be a widespread misunderstanding that this guideline is encouraging medicines to be withdrawn, that is probably where conversations with commissioners need to be focused. It’s in the same way with all of the other NICE guidelines that are around that limit the recommendations around medicine’s use.
One of the issues we have is, we can’t tell by looking at somebody whether they’re in that 10% of people that may benefit from using an opioid for example. Our only way of knowing is to actually trial medicines, then only to continue them in people where benefit is seen. I think that’s the conversation that needs to be had with commissioners, that this is not a blanket case of ‘let’s stop using medicines when people present with pain’ but let’s change the way that we use medicines, when people present with pain. Let’s make sure we don’t continue using them, where there’s no benefit shown.
Question 2: Is there lack of evidence for use of Gabapentinoids in chronic primary pain, or are they not recommended as they can be an abused drug/side effects?
Answer: Evidence suggested a lack of benefit of Gabapentinoids for chronic primary pain. No evidence was identified on the long-term safety of Gabapentinoids; however the committee were aware of reports of harm and risk of misuse and dependence highlighted by the MHRA notification of the reclassification of Gabapentinoids as a class C substance controlled under the Misuse of Drugs Act 1971 and scheduled under the Misuse of Drugs Regulations 2001 as Schedule 3.
Question 3: I think the fear is around who the judge will be when thinking about, ‘if the medication is beneficial.’ What objective markers will be used – i.e. postcode lottery if GP prescribes or not?
Answer: Yes, this needs to be acknowledged, real fear. Hopefully, the guideline makes it clear that this is a shared decision-making process – person brings their lived experience, clinician brings their knowledge.
Question 4: As we have seen in the past, if not NICE recommended, then CCGs do not approve use – so won’t withdraw but also won’t fund? How will that work in our workplace and impact on patients? Is this a bit worrying?
Answer: Yeah, if that comes to fruition obviously it would be worrying, as a lot of the concerns around medicines comes down to the underlying diagnosis. Certainly speaking to GP’s that I work with, their understanding of chronic primary pain is only just forming now. This is an internationally agreed diagnostic criteria, so it’s important to say NICE have to work with that, they haven’t invented it for the purpose of the guideline it was developed separately. I think it comes again to those conversations with commissioners and conversations around funding of medicines for conditions that are very difficult to diagnose in practice. We will have to be pragmatic and say that if we are not entirely sure of the diagnosis, then we have to treat what is in front of us, as practitioners. Having a wide range of treatments available, is still absolutely necessary. What I take from the guideline perhaps more so than anything else, is the need to not continue things which aren’t helpful and to have honest and open conversations that start a treatment with patients, that this may be limited in terms of the benefit to you.
Question 5: I struggle with the distinction between chronic primary and secondary pain. Does it not suggest that pain is ‘real’ where we can see a physical cause and less so where we can’t or it’s disproportionate?
Answer: Really important to acknowledge and validate the person’s pain experience. Guideline makes this clear over a number of recommendations.
Question 6: What is the one positive thing we can take from the new NICE: Chronic Pain Guidelines?
Answer: 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.
Question 7: Since there is a possibility that withdrawal of pain drugs may exacerbate or even heightened pain sensitivity in patients with chronic pain, is there is a specific guideline, recommendations, or decision-making algorithm that we can follow to mitigate such problem?
Answer: Yes, draft due to be published by NICE in June:
Prof Cormac Ryan, Professor of Clinical Rehabilitation, Teesside University and Community Pain Champion, Flippin’ Pain
Question 1: Have NICE recommended any research needs in the field of pain education?
Answer: No they haven’t, (this is part of the confusion with respect to education), they’ve said that there’s no clinical effect but at the same time, they’ve also said it’s good practice and you should do it. Based upon that latter part they’ve said if it’s good practice and you should do it why would you do further research on it? It’s like having your cake and eating it – it’s really confusing as to why they would recommend doing it, if it doesn’t seem to have an effect… If you’re going to come out and say that it doesn’t have an effect, you need to base that on evidence. If you’re only basing it on two studies then more evidence is undoubtedly needed! They haven’t come out and recommended more research in this area but I’m at a loss as to why they haven’t, if they’re basing their recommendations on two papers then undoubtedly more research is needed in this area…
Question 2: There’s lots of issues around cultural change in NHS, particularly around staff expectations how do we move forward with making sure we’re able to deliver change that meets staff experience and needs?
Answer: Making sure that they’re engaged in that process and it’s not done to you. There’s two parts to culture, there is the overarching framework and the infrastructure that we create and making sure that people have safe spaces to air their concerns and share their stories. Then, there’s also the part which they play a role in helping shape those solutions. It’s those two things, there’s only so much you can do, the system will move as fast as it will allow itself to be shifted and certain key leadership positions might be able to influence that, but just starting to chip away and create those spaces becomes extremely important.
Comment: I suffer from Chronic pain in my back. (awaiting operation) I can tell everyone here that the best treatment for my pain has been educating myself on it. I don’t take any painkillers after reading the Flippin’ Pain™ website and educating myself. I currently review patients taking high dose opiates as a Medicines Optimisation Pharmacist. I advise all my patients to educate themselves and almost all of my patients are starting to move in the right direction. Education IS KEY!!!
Answer: Thanks to that person for plugging the Flippin’ Pain™ campaign, I agree enormously with the point that the individual is making about the importance of education and what a transformative effect it can have on some people, not everyone but on some people, it can be truly transformative. I think if we look at the Flippin’ Pain™ website and we listen to the stories of the people with pain, we hear what an important component education was for them, learning more about their condition and helping them to make more informed choices about that their own management.
I guess that is partly what ‘grinds my gears’ with regards to the new NICE guidelines and education. I fully sympathise with the point that Chris has made, that the authors are restrained by the evidence base that is there, so when your search comes up with only two articles on pain education, you are limited to what you can say about it. My concern is more about the search itself and the parameters of the search and I feel there is so much good evidence around education that if the search was broader etc or if the parameters had been different, we would have gotten a very different answer within the NICE guidelines. What I would say broadly speaking about education, is that I think there’s a robust evidence base to show that it can help to reduce psychological distress if you look at the pain literature overall. That’s why I’m a big proponent of it and agree with what the individual has said.
Question 3: What is the one positive thing we can take from the new NICE: Chronic Pain Guidelines?
Answer: I think the fact that NICE recognise the importance of good education within the clinical encounter, that is something that’s worth acknowledging… and a good thing!
Mike Carpenter, Advanced Practitioner and Developing Consultant Physiotherapist, Connect Health
Question 1: You talk about validation of someone’s pain. Do you think there is a risk that promoting psychological therapy, would potentially lead some people to conclude that chronic primary pain is therefore “psychological”?
Answer: That is a genuine risk if it is sold in that sense. I’ve heard people talk about psychological therapies before and say, ‘well you know you’ve got yellow flags and that’s why you’ve got chronic pain therefore you need to see a psychologist to address that’ and that that is stigmatising and potentially upsetting for somebody. If you lived every day of your life with chronic pain permeating into every aspect of your being, is it not normal to potentially feel low or to feel a bit deflated by that?
I can’t imagine many days you are waking up feeling full of positivity when that’s been your overall experience. Given that is so normal, it is absolutely reasonable to seek help. That’s going to allow you to find ways in which you can lessen the burden of what is quite a normal reaction, in response to the situation that you’re in.
We have got to be able to redefine psychological therapies as a means to engaging people to connect with what matters to them, rather than seeing it as a stigma of this is some psychological issue that’s been made up and that you need psychological help. We need to be careful that we don’t endorse that model for people.
Question 2: Why does NSLBP make it into the primary chronic pain category but other non-specific MSK conditions: anterior knee pain, rotator cuff related pain, GTPS are presumably in the category of secondary chronic pain?
Answer: This highlights that some of the confusion that is potentially going to occur as we get used to the adoption of this idea of chronic primary pain. The challenge is that some people with non-specific low back pain will have a very mechanical pattern, that’s very particular and very targeted, which may indicate that there is a more particular nociceptive, if we go back to that sort of terminology, aspect to their disorder. Someone with knee pain might have very diffused pain that is very unpredictable and far more in keeping with chronic primary pain. So I think you’re right, body region differentiation seems a little bit arbitrary and it comes down to the pattern and presentation that we see. Or if it fits with, what would be presumed to be, a local tissue driven secondary disorder, or whether the presentation gives us a clear indicator. This is far more unpredictable and not likely secondary to an underlying local tissue disorder in the first instance.
Question 3: Where do we stand as clinicians, where there is conflicting guidance between the NICE guidelines? i.e., acupuncture not recommended in LBP and sciatica guidelines but then recommended to offer within chronic pain guidelines.
Answer: Yeah, I guess as a clinician that judgement which links into the previous question I had about differentiating ‘when is back pain, back pain and when is it a primary pain’ is challenging isn’t it? These are guidelines – and they that state to consider acupuncture, rather than offer acupuncture. They obviously give clear parameters and it’s making that reasoned judgement – as I alluded to during the talk – what now? If you’ve delivered a course of acupuncture for anybody with pain and it’s likely to be long-term pain, even if that provides some relief in the short-medium term, what now? Where do we go next with that? As it can’t have a rehabilitative effect, it can’t necessarily transfer into other aspects such as holistic long-term management. It is something that we’re going to have to make sense of and work out together. This criticism of guidelines is that it is probably condition specific and doesn’t reflect the complexity of co-morbidity and of people with different presentations. That probably then comes down to using it as a guideline, to make a clinically reasoned judgement on that.
Question 4: As a clinician working at the coal face of pain management what do you feel are the greatest risks with regards to how those commissioning services and your peers involved in delivering care might interpret the guidelines?
Answer: I will just make that point – assume that we do not understand the answers, or the solutions and our stakeholders do not understand what we’re trying to do and keep asking that question until it’s all over and being done.
Question 5: Do you know the rationale as to why exercise and psychology are recommended separately as treatment options but not combined approaches like CPPP or MDT PMPs… which are both exercise and psychology (and more)? I wonder if it’s because of NICE use of only high quality RCT has limited its recommendations – psychological processes aren’t measured in the same way as medical treatments or medications?
Answer: Thank you. It makes total sense that these are interlinked and cannot possibly be compartmentalised when treating an individual, a whole, not their ‘constituent parts’. NICE were not able to draw conclusion for CPPP or PMP for chronic primary pain specifically as so often the cohorts of people involved in the research studies have a range of pain conditions not just chronic primary pain. It is a research recommendation, however.
Question 6: How much is multi-disciplinary working emphasised in the guidelines? As opposed to a series of 1-to-1 interventions, for example.
Answer: The evidence for programmes for pain management was mixed. For ‘secondary’ causes, including low back pain (the most common cause of chronic pain in UK), programmes seem to provide benefit. Yet this wasn’t seen for primary pain. The committee speculated why the evidence for individual components was positive, but no signal for programmes for primary pain. This is in the guideline: Pg30, https://www.nice.org.uk/guidance/ng193
Question 7: When I think of the difference between passive vs active, I think more of the driver behind that intervention e.g., is it something that is being used to take pain away, or to help the person do something that’s important to them (or both). With that in mind, categorising interventions as either active/passive depends more on the purpose/aim of that for the person (e.g. why they’re doing it
Answer: Thank you – you are right that it is not a clear differentiation between active and passive – and I probably did not make clear enough my interpretation, that passive would done to and be ‘non-rehabilitative’ – there may be limited additional benefit to these i.e. TENS cannot help improve health, will not support reconnection with valued activity; it will always be a trial to see if provides relief but we ned to be mindful many people have already been trying this (a lot) and find themselves in a perseverance loop – more rehabilitative approaches may offer an alternative to this loop.
Question 8: Mike is spot on. How do we anticipate that services might be commissioned based on the NICE guidance? Might the separation of psychological and exercise approaches might affect how these are delivered as Mike mentions?
Answer: The impact assessment of the guideline shows that good care costs money. The costs of providing non-pharm treatments cost much more than what can be released by de-prescribing or not starting medications. Typical costs for England: £15mil to 45mil to implement! https://www.nice.org.uk/guidance/ng193/resources
Question 9: I am confused as to why a TENS machine is considered passive. Why would it not be considered for a trial for use by the patient as part of their pain tool kit and for flare up management? Surely a self-directed modality that could help some people with their function and is relatively cheap with minimal side effects has a place alongside other management strategies
Answer: Thank you. NICE showed Limited evidence for TENS showed no clinically important difference compared with sham TENS and usual care across several outcomes at less than 3 months, and no longer-term evidence was identified.
Question 10: How can we make sure that all health care professionals from first visits to primary care, can provide appropriate information and guidance to people seeking help with pain and will be in a position to signpost patients to the treatments, recommended by the NICE guidelines?
Answer: I think education for clinicians and production of materials to aid discussions with people with chronic pain. Can the professional societies help develop this?
Question 11: What is the one positive thing we can take from the new NICE: Chronic Pain Guidelines?
Answer: 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 GP’s were concerned about.
Victoria Abbott-Fleming, Barrister, Inspirational Speaker and Founder of Burning Nights CRPS Support, Chair of the Patient Voice Committee at the British Pain Society
Question 1: Are there any positive points in the guidelines from a patient’s perspective?
Answer: It does appear that we have given quite a lot of negatives and my apologies on that. Yes, there are a couple of positive points, including the shared decision making for example. If it works then this will be a good thing but in reality, will it actually happen? They’ve also included information regarding flare-ups as I mentioned but that didn’t go far enough. These guidelines could have gone into more detail on managing and self-managing those flare-ups. There’s also the mention of the care and support plan, if this does happen, it will be a good thing, as it will help patients go forward into their pain journey knowing they’ve got the support and the care plan going forward. Psychological therapies have been included, which is another positive because as we know and as mike said the pain affects people not just physically but also mentally, however, it is also getting access to these therapies.
Question 2: This is such an interesting webinar – I feel supported in my experience as a Secondary chronic pain patient (nerve damage in lower back L5S1) My huge concern is the fact that my GP has reduced my opiates significantly and I have suffered terribly as a result. My increase in pain as a result has been ignored completely! Is there anything I can show my GP as proof that my life is deteriorating as a result of this and to allow me to have some decision in this please?
Answer: Having a pain and mood diary is one approach to go down, so you can show how your pain has progressed and if any treatments are not working. You could explain how your mood is and your physical activity then show these to your GP. If you’re under a pain consultant at pain clinic, it might be wise to have a discussion with them as well and get comments sent back to the GP. It seems to be the GP that’s making the decisions, try having a look in the CPP guidelines and seeing if there’s anything in there that you can take away. Try to educate yourself about your condition, which hopefully you have done and certainly looking on the Flippin’ Pain™ and Live Well With Pain websites. Just try your best. Keep going back to the GP and explaining things are not working but if you have a diary with you, it will explain to them that the types of problems that you’re facing, to see if they can help. If there’s anything that you haven’t tried treatment-wise, it might be wise to work with them to see if there’s any treatment options available to you.
Comment: The problem with using acupuncture as a ‘painkiller’ is that it is not using acupuncture as it should be used in traditional Chinese acupuncture. If using it for pain management in TCM approach it is far more beneficial because it looks at pain as a symptom of a syndrome.
Answer: The evidence we reviewed at NICE showed that acupuncture improved quality of life at up to 1yr following a short course of acupuncture, independent of effect on pain. This was modelled further to reduce the uncertainty about whether this a cost-effective intervention. NICE pushed the tech team very hard in view of the conflicting advice compared to low back pain, but acupuncture was still shown to be clinically and cost-effective for people with chronic primary pain.
Question 3: If this will cost more money for NHSE to implement, where will the money come from, has it been ringfenced/ earmarked?
Answer: Not ring-fenced. Most spare cash going into treating long covid. Needs lobbying and pressure groups to get political buy-in similar to cancer, mental health etc.
Question 4: What is the one positive thing we can take from the new NICE: Chronic Pain Guidelines?
Answer: It would be the shared decision-making, to make it that it’s a decision between patient and professional and it’s not just professional-led is really important.
Question 5: I feel these guidelines are cost driven – particularly around MDT working/services and expensive medications that do work for some patients. Instead of removing all treatments – attention should be focussed more on find out what works for whom – this is a blanket approach for a highly varied patient group.
Answer: Thanks for comment. See my comment above. This guideline will cost money to implement £15-45mil for England. Good care costs money, not cost neutral or saving.
Question 6: Is there any way to come back on a NICE guideline? My thyroid group sent a complaint about the NICE thyroid guideline, which refused to include certain information and recommendations vital to a large minority of thyroid patients, but to no avail. NICE would not engage. Any thoughts please?
Answer: Yes, several ways. Firstly, if there is new evidence, alert the surveillance team, who keep guidelines up to date and schedule when reviews are due. Secondly, if you feel that a future guideline or update needs to address a new topic are, lobby your stakeholder group (patient representative group or professional group). https://www.nice.org.uk/guidance/ng193/documents/stakeholder-list https://www.nice.org.uk/news/nice-newsletters-and-alerts/subscribe-to-nice-surveillance-report-alerts
Chris Barker, Clinical Lead and member of the NICE Persistent Pain Guideline Committee, joins QA panel:
Question 1: Where do we stand as clinicians where there is conflicting guidance between the NICE guidelines i.e. acupuncture not recommended in low back pain and sciatica guidelines, then recommended to offering in chronic pain guidelines?
Answer: I think as Mike says, it boils down to really where the evidence lies on what the guideline is for and as it’s been alluded to today, when NICE produce guidelines it’s fairly tight what the brief is. You can produce our guidelines for a specific type of pain and in this case it’s chronic primary pain and in other cases, as we’ve mentioned there, low back pain. The evidence will be different and will be drawn from different sources, the studies will be different studies. It’s a little bit like comparing apples and pears because you’re comparing different conditions and different evidence bases but the complication, I think with pain overall is that there’s sometimes elements of mixed pain and that’s where it’s not true exactly to say we are comparing apples and pears, because there may be a bit of pear-ness about the apples and a bit of apple-ness about the pears, which is where the complication arises. You can get mixed states but the short answer to this is, it’s where the evidence base lies and it’s where the data is drawn from. This makes you draw different conclusions, so I guess that’s really where the bulk of the answer lies.
Question 2: What is the one positive thing we can take from the new NICE: Chronic Pain Guidelines?
Answer: Hearing the strength of people’s voices in the response to this guideline 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 on the guideline committee start with the view we want to improve things and hearing the voices of people who have pain and the concerns they have that can only bring this out into the discussions in a much wider way. I strongly believe that this will have a positive effect on pain management in the long term.
Watch the webinar again, which includes further insight from the speakers including a full Q&A session, and read more about the speakers here:
Read more about transformation at Connect Health: