This is Airing Pain, a programme brought to you by Pain Concern, the UK charity providing information and support for those of us living with pain and for healthcare professionals. I'm Paul Evans. It's a revelation to use something like this in the consultation. I actually felt my appointment was longer than a normal appointment. I had no awareness. It was just a 10 minutes. I actually felt I was given more time. In 2015, Pain Concern published its report, Barriers to Self-Management of Chronic Pain in Primary Care.
It marked the end of phase one of its Breaking Barriers research project funded by the Health and Social Care Alliance and Edinburgh and Lothian's Health Foundation. You can find all details of the project, including our series of self-management videos, at Pain Concern's website, which is painconcern.org.uk. Now, having identified the barriers, Phase 2 was to develop and pilot a navigator tool to prepare patients and their healthcare professionals for their consultations. That's now complete, so let's just remind ourselves of what those barriers identified in Phase 1 were. Rennie Blomqvist is Pain Concern's researcher for this phase of the project. After interviewing healthcare professionals from across primary care and patients and their carers.
they found that the barriers were themed around the consultation, patient experience, limited treatment options and organisational constraints that were found. For example, in the consultation, it was often the timing of the self-management discussion and that the communication was quite difficult. Even though patients sometimes wanted to speak about self-management, it wasn't perceived as that the healthcare professionals were up to speaking about it. And likewise, the healthcare professionals found it awkward to bring this up with patients. So the Navigator tool tries to bridge that gap in the communication by preparing both parties for the conversation because the previous study found that although both parties wanted to talk about it, it was something that was quite difficult to talk about. How did you...
to the research? Who were your subjects? We wanted to try out the tool broadly in primary care. So we used two GPs, two pharmacists, and one physiotherapist, and they in time recruited a handful of their chronic pain patients. So that was broadly any patient who'd had pain for over three months. We asked for them to ask them if they wanted to participate. And we ended up with a sample of 35 patients who were participating, and we were going for a randomized control trial structure, which meant that half of them were not going to receive intervention so that we could compare the results between the two groups. So we ended up with about 16 or 17 patients who used the tool, and we had some questionnaires administered to them that were measured.
their confidence in pain management, their perceived shared decision making, so how much they felt that the healthcare professional was enabling to them and letting them share in their decisions. And then the consultation quality index, which is a holistic marker for how enabling healthcare professionals are perceived to be by their patients. And then we also had a feedback sheet that was specifically feedback about the tool itself. How easy was it to use? Was it too long? Kind of concrete questions like that. And which parts did you use? And we asked for specific comments as well on how can it be made better and what did you like about it? And then I also did eight interviews with a random selection of patients across the sites.
I interviewed all the healthcare professionals as well to sort of get a more in-depth and individualised idea of what they thought of it and how they used it. John Hartman is a GP in Dunbar on the east coast of Scotland. He has a special interest in chronic pain and was one of the GPs involved in assessing the navigator tool. So just explain what the navigator tool is. It's a document that is designed to help health professionals and patients to understand the range of treatment options that are available for them to help them with chronic pain and to help focus the professional consultation in a way that helps both the professional and the patient to understand the many, many complex factors which can contribute to chronic pain problems.
Well, I've got the navigator tool in front of me. It starts with a questionnaire to be done by the patient or the doctor. The way I've used the tool is that the tool is posted out to the patient beforehand, which is different from how most GP consultations work. Usually the patient comes in fresh and they just give us their description of the problem. Whereas this is different, it allows people to actually really focus and think about what's going on beforehand. In what way?
It raises a whole range of different questions, very open questions that ask patients to think about how pain affects them in their life, different elements of their life that it might be affecting, and then some more focused questions to think about whether they might have other issues around their medication or their mental health or activities of daily living that might be impaired by their chronic pain. Just to work out how it might work, I would come to you as a patient maybe with chronic pain, I have chronic pain, would you then be able to say, right, I've got this form for you, let's do something else in a week's time, in a month's time, bring the form back to me and tell me what's on your mind? Absolutely, yeah. Or another option is that some GPs may be able to go through their list of patients who are coded with chronic pain, identify the ones that might well respond well to this tool and actually send it out to them proactively. How did it work in the pilot you were involved with? I went through a list of patients who I knew had chronic pain problems and selected them to ensure that they met the qualification criteria for the study. The qualification criteria, was that just you have chronic pain, therefore you can take part? It would have required someone to not have very severe mental health problems that would preclude them from completing the form and engaging in appointments in a constructive way.
they would not be able to have, for instance, something like a severe learning disability, and they would have to be able to read and speak in the English language to be able to use the tool. But, you know, those are factors that could be overcome if developing a tool further. GP John Hardman. Blair Smith is Professor of Population Health Science at the University of Dundee. He's a consultant in NHS Tayside's pain service with most of his clinical career spent as a GP. He was part of the steering group behind the Navigator tool. Chronic pain is a very complex condition. It's difficult to understand, let alone to explain. And that's true for both patients and professionals. Where I see one of the main roles of the Navigator tool is by allowing patients.
time to reflect on how the complex condition affects them in all the multi-dimensional ways and to give them a structure and language in which to put a conceptualisation of that, an understanding of that to a healthcare professional. But it works the other way round too because the time that a GP, say, has to discuss chronic pain with a patient consulting them is very limited. maximum efficiency that can be gained is beneficial to both parties, and I think the navigator tool has the potential to provide that. You know, if you've got chronic pain, you don't understand what's going on, you just know that so much is going on and it's all going around the head. I know this because I've had experience it myself too. And it's difficult to tie these things down, so this form just enables you to pull these separate entities in and to attach labels to them, and also to let you see that these are normal, common things that other people who are in similar situations experience, and therefore it's perfectly okay for you to consider them as part of your condition.
And then you can begin to formulate your conversation with your professional. What sort of things are on the minds of people with chronic pain before they've actually been, well, taken into the system, if you like? My main experience is that they probably haven't given it a great deal of thought. They're just aware that they have a painful condition and they come asking for it to be got rid of. To be mended. To be mended, exactly. Without necessarily thinking what aspects of it are causing the greatest problems, what aspects are amenable to being mended and what may be more appropriate to come to terms with and understand and move ahead with managing. And it works again both ways. The effect of that is they come to the GP.
They expect to get a tablet and go away with it mended. Equally, the GP, because it's the easiest thing to do in a 10-minute consultation, will very often prescribe a tablet and say, go away, perhaps they might say come back, perhaps they might not. But I think one of the advantages of this navigator tool is that it helps to emphasise that medicines, so-called painkillers, are only one part of the overall treatment strategy. They rarely cure the problem. They're called painkillers, but they rarely kill the pain. They don't address all the other important aspects, the psychological, the self-management, the movement and exercise and activity, coming to terms with having a long-term condition. And unless all those things are addressed.
Whether or not there's a tablet given, then the chronic pain is rarely going to improve. Professor Blair Smith. Lucy Murphy's had chronic fatigue and pain for around 10 years. Her GP at St Tridwana's Medical Practice in Edinburgh is Dr Louise Bailey. We've done a lot of work in the practice recently thinking about how we care for patients with long-term conditions and difficulties. We've looked at all sorts of ways of trying to communicate better with patients, trying to have better conversations in the consultation with patients, and really support patients to self-managed conditions. So I think there's been a massive shift, or we're trying to shift.
in the way we're caring and delivering. this type of support for patients and I suppose when the opportunity to be involved with the toolkit came about it seemed a very natural thing for us to be involved with and it sat well with the ethos of our practice and the way we were trying to support and care for our patients. So tell me how you use it. Well this was part of a research project so it was done under control conditions so some patients were randomised to have the toolkit and bring that to consultations which we met monthly for normal length appointments within the surgery and other patients with the condition were seen in the standard way the way that they would have presented normally without using the toolkit.
So how did you find it to use? The document itself is interesting. It has a lot of incredibly helpful, I think, information for patients. So I would be a little concerned for some patients whose perhaps health literacy was not quite as good as others, might find it quite difficult to work through. But it had a lot of useful information and essentially the main page on there where patients came to the consultations and had prepared, it really sort of set the agenda for our consultation because they'd given thought to what they wanted to discuss before the appointment.
Lucy, the first part of the Navigator tool involves you filling out a form. I found that really interesting because it was all the questions that were relevant and it focused me on actually what I was coming to the appointment for. So when I was coming to the appointment, I wasn't rambling trying to get across what it was. It wasn't just all my ankles really sore this week. I was honing in more on what was bothering me about that. Was it that I was unsure about the diagnosis? Was I worried that I was on the wrong medication? And it allowed me to look at exactly what I was coming into question. So it focused you to come along to the consultation. Yes.
But were you able to focus on those things before doing this? For me with a long-term condition, sometimes if you get pain in a different place or it's a different symptom, I find it quite hard to make the appointment and come because I feel like, oh, it's me just turning up being a bit, oh, this has happened now. And I actually felt that made me focus in more exactly what it was. So that ankle's hurting, but does that mean there's something else wrong? Does that mean my medication's not right? Is this something I just put up with? So it allowed me to look at the reason for having the appointment. That's really interesting. I have fibromyalgia as well. And it's so easy to go to your doctor and just say, listen, I feel absolutely awful without actually thinking.
What is making me feel awful? How am I awful? Am I just miserable? Yes, and why am I here? What am I asking you to do about it? And actually something that came out of this was having three monthly appointments, which probably isn't good news for the GP, but actually that was quite reassuring that you didn't have to have something wrong with you just to come back and have a five-minute chat about where you were. So you're being treated as a whole person, if you like. You don't have to be in a particular state to go and see a doctor. It's a continuous process. Yes, yes. That's Lucy Murphy and her GP, Dr Louise Bailey.
The third part of the navigator tool comes under the heading self-management options. Now the term self-management in itself, if not introduced correctly, could well be one of those barriers to successfully managing one's chronic pain. John Hardman again. First of all, an important aspect of that is that we're trying to reframe it as supported self-management rather than just self-management on its own because a very important aspect of that is that you're not on your own. You're doing it with the support of your GP, your physiotherapist, your pharmacist, maybe your counsellor as well and a whole range of different health professionals. Secondly, broaching the issue of self-management. A useful way of doing that often is to talk to patients about the obvious thing that they're often there to see the GP about their drugs, their medicines and how that's helping.
And for many people who've travelled a long way down the journey of chronic pain management, they might come and see me on a whole range of different drugs. And it's usually pretty obvious that a good few of those aren't making any difference at all. Patients are coming in to see me because their pain is bad. And if you're on a whole bunch of drugs, that pretty much immediately tells you that actually many of them probably aren't working terribly well. For many patients, they will then, it doesn't take much to have that discussion and say, if all these tablets so far haven't made a difference, we're running out of options. We don't have many other drugs that we can safely try. So what we do need to think about are the things that we know work.
So for instance, for chronic back pain, we know that exercise is the most effective intervention, far more effective than most drugs. And we know that for most chronic pain, one of the things that really does work is supported self-management, whatever that is for the individual patient. And it'll be different things for everybody. So I think framing it in that kind of context, I often see a little light bulb going off just above patients' heads when they realise that actually there are other things they can do. It just seems a shame to me that the way you describe it, I mean, it's almost like stacking up drugs. The last one didn't work, this, that, the other. It's almost as if self-management should have come before that. Absolutely, 100%.
Lucy, how did your pain journey start? Well, I think it was over 10 years ago. I had like a flu-type illness over a month and tried to recover going back to the gym and just had complete fatigue. I couldn't do anything and came along to the GP, had lots of blood tests and had an underactive thyroid diagnosis at first, which sort of masked really what was going on. I think it took quite a few months until I was then told that the diagnosis was chronic fatigue syndrome. But the management of it then, how did that start?
That wasn't very positive. I was just told I had it. And that was that, really. And a printout. No more advice than that.
Did coming on this trial, on this research project, was that a changing point? I think about a year before I had been referred to chronic pain in any clinic. So that's why I was interested to do this, because I'd already experienced something like that. And I found with that it was actually talking to somebody and them acknowledging things I was having difficulties with and telling me that other people had that as well, that put it in a perspective and helped me accept it and handle it better, I think. Louise, the fact that Lucy had been on a pain management programme, does that mean that she was the converted anyway?
reaching to the converted. No I don't think that's necessarily true because I think it's a continual process of reviewing and reflecting and what you want to do is try and optimise the quality of life that patients are having and I think there were things that we had in our consultation that we discussed which were very specific to you and your family and your condition. With some patients that I use the tool with it actually affirmed the progress they'd made and that was a really positive thing that to say well actually we've looked at this and you don't have any concerns in this particular area. And that's actually really good. So one of my patients who was a bit dubious about how helpful it had been, we actually used it as a way to illustrate the progress that she had made in managing her condition. We did draw other things out, which I don't think would have come out without using the toolkit. So that was a very positive and sort of affirming thing, which showed the progress that she had made. And I think Lucy had a huge amount of insight into her condition.
We still managed to look at other areas and other things and things that she might do, which perhaps wouldn't have been drawn out of a normal 10-minute consultation for which she hadn't prepared in the way she had done using the tool. Were the patients it didn't work for? The effectiveness for individual patients varies, just as their condition and where they are in self-management and understanding their pain, how best to manage it, varies too. So for some it was, I think, very useful, for some it was less useful. As a clinician, I found every contact really helpful.
I don't have any doubt that every patient that was engaged in this project, I feel I have a better understanding of their condition and their situation. So should they come back in the future to see me, we've gathered important information. One of the great values of my job is continuity. And I put a high price on that for my patients. So using a tool like this and then seeing them again means that you're layering your knowledge and understanding of the patient and their condition so you can be more effective as a clinician. The final section of the Navigator tool is goals. And that's where you set, not you set, that's where the patient agrees.
You tell me what the goal is. I think that exemplifies the challenge there, because often goal setting has traditionally been the doctor saying, well, you know, by next appointment you've got to do this, and that's not what it's about. It's about the patient deciding really what they want to do, where they want to be, what they want to get out of this, and then choosing that as an end point, and then between the doctor and the patient working out, well, how are we going to get there together, and deciding something that is realistic and achievable, maybe less than what the patient... perhaps expected to achieve in the first place, but which the doctor in their experience thinks, yeah, we could maybe get there within four weeks or 12 weeks or whatever. So setting a goal that is achievable and then working out how to get there.
GP, Dr John Hardman. So, Pain Concerns Research Project to identify the barriers to self-management of chronic pain in primary care and develop a tool to break down those barriers, that is the navigator tool, is at a stage where it can be rolled out, albeit with a little tinkering round the edges. Professor Blair Smith. Ultimately, what I would like and part of the education that we would like to facilitate across the whole patient professional population is that chronic pain isn't necessarily a medical problem, actually. It's a social problem and it's a psychological problem.
What this tool does is it helps people to reflect on that before they come for the 10-minute consultation. And it means that some of those previously unrecognised associations will be recognised even when they first come. It may even mean that if they take this through to its logical conclusion that they'll be able to address some of the most important issues on their own without coming to a GP. And I would certainly like to see ultimately that people who have chronic pain will not necessarily consider the GP as the most important or the first port of call. Some of the results from phase one of this project, which was barriers to supported self-management in primary care, one of the things that came out from the patients, the people with pain, is...
Doctors don't believe them, or they think doctors don't believe them. Now, we've talked about how patients might use this. How would doctors use it? That's a very good point. I guess there are occasions where doctors won't believe somebody telling them they're distressed. It perhaps is more of a misperception, and it's partly more of what I was referring back to earlier, the sense of complicity in seeking and providing analgesia as the most straightforward approach. It can be difficult for a healthcare professional to find the language to introduce the concept of self-management if the patient either isn't, or if the GP thinks they're not ready to embark on a conversation about self-management.
Because it's a difficult concept to present, sometimes you might feel that by discussing relationships between pain and modes of thinking or methods of living, that you are implying to the patient that it's all in their head. It's a difficult conversation to have at the best of times, but when the time is brief, it's difficult to have these conversations to find a common language. And that's exactly what this navigator tool addresses, by providing the common language from the start. How would you envisage this being rolled out? One of the things that's clear from what I understand from pain concern is that it's only used by healthcare professionals who have been trained to some extent in its use. Professor Blair Smith. Here's project researcher Rennie Bonkvist again.
The intervention as a whole is actually training for the healthcare professionals and the tool for patients. So the training session was kind of preparing the healthcare professionals for the types of questions that the patients would come in with and the types of responses that would facilitate self-management. In one of your documents, you have terms like in part of the consultation techniques, EPE, illicit, provide, illicit, explore. What does that mean? So, illicit, provide, illicit, explore. The idea is that if you ask someone on a scale of one to ten, how confident are you in self-management, then they'll say maybe two, if they're really unconfident.
But then you can ask them why a two, why not a one? So there's always something that they know themselves that they're doing well. So you try and enhance what it is that they already know. And then from what they're already telling you, you can give them more advice. And then that will sort of get the conversation going and you elicit and provide information that way. So in layman's terms, maybe, you know, I say I'm miserable on a miserable scale. I'm two out of 10. You would want to know, OK, at least he's not one. So could we call that glass half full and glass half empty? Yeah.
And a lot of people forget that they do have strategies or ways that they are managing their pain, that they are making themselves feel better. And they're just focusing on the eight points that are bad. But if you bring the attention to the one point that is good, that can often help. Now, I'm obviously talking to the converted here. How do you spread the good news? What I now feel using this toolkit in my consultation is now I need to share this with my partners and probably for wider use in a way that is accessible and convenient and easily put in within the consultation tools that we have already. So pages from the toolkit I've now saved on the computer so can be printed out if I see a patient with chronic pain and then I'm wanting them to come back and get some thought or prepare for...
an appointment. So that's a very easy way that any GP could allow a patient to go away and think about how the conversation or the discussion goes for a next appointment. It varies how you might use the tool for different patients and one of the things I think I learned about different patients will use different parts of it in different ways at different times and so having a flexible tool that you can use for patients when they find themselves in different places or in different situations adds value to that. And how do your colleagues take that on board? Well I find as with any clinical change it's a process of refreshing and discussing and people using things.
practicing when they get some success with it that builds confidence and so that and or if there are problems you identify them and discuss them and we do that with any new thing that we implement in the surgery so i would be hopeful this would be taken up in a similar way that's dr louise bailey all the information and resources on the navigator tool and the breaking barriers project are on pain concerns website which is painconcern.org.uk and you can download all editions of airing pain from there as well as from pain concerns youtube and facebook channels Now, before I end this edition of Earring Pain, I'll just remind you that whilst we in Pain Concern believe the information and opinions on Earring Pain are accurate and sound based on the best judgments available, you should always consult your health professional on any matter relating to your health and well-being. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.
I've been a GP for over 25 years, and the revelation about managing pain 25 years ago was the World Health Organisation step to visualise increasing pain relief, so that you started with paracetamol, anti-inflammatories, CODI, and you got stronger, stronger painkillers. And as more and more patients have presented with pain, if you adopt that model and you don't recognise the value of the enormous amounts of research that's been done in the management of chronic pain and conditions, and that the holistic approach to both... prescribing, supporting patients and helping patients self-manage, you've absolutely missed a trick. One of our main jobs as a doctor is to do no harm. And what it is really easy to do when you see somebody with pain is to give them a stronger painkiller. And actually, I think what the toolkit and using that helps me to do was to look much more effectively at the patient's life, how it was affecting them and how I could specifically support them to make changes. You and your colleagues are still up against this barrier of 10 minutes.
for a consultation. Yeah, and that's exactly right. But the value of having a patient who's prepared for a consultation and is setting the agenda on arrival means that that 10 minutes is used in valuable support for the patient. The agenda is set by them, not by the doctor. And of course, when you're managing a long-term condition, it's about what matters to the patient, not the doctor. I actually felt my appointment was longer than a normal appointment. I had no awareness. It was just a 10 minutes. I actually felt that I was given more time.