You're listening to Airing Pain, a programme brought to you by Pain Concern, a UK-based charity working to help, support and inform people living with pain and healthcare professionals. This programme's been funded by Pain Concern's friends and supporters. Now, do people with chronic pain really have a say in how we're treated? Are we given the right information to make informed decisions? Are our views as experts in how our pain affects our lives really taken on board? And do the different disciplines in the health profession who manage us treat us as conditions or as individuals? Indeed, do they communicate with each other at all?
These issues were addressed at the British Pain Society's annual scientific meeting in Manchester when Dave Thompson, a GP in the north-east of England, spoke about shared decision-making and his involvement in the MAGIC programme. And that's an acronym for Making Good Decisions in Collaboration. The MAGIC programme has been an implementation programme in hospitals and general practices to try and work with frontline staff and with patients so that they are making better decisions together by sharing information, looking at the pros and cons of different options and arriving at a decision that's best for the patient, that fits. So where are the barriers to shared decision-making?
Oh, lots. I mean, for good shared decision-making, you need good information. So one of the challenges is we don't have good information about lots of the things that we do. What is the relative benefit of exercise programs versus cholesterol-earing drugs? Or in a pain context, we have very poor evidence about how many people given an opiate for musculoskeletal pain will improve versus the number of people who will improve using exercise as their way of coping with their pain or improving their pain. So one problem is evidence. The second problem, I think, is that many...
professionals, many clinicians, are uncomfortable in a number of ways with really... opening up the dialogue to being shared. So some may believe that patients won't be able to understand the details or the complexities of the science, if you wish, the evidence. Some may think that there's not enough time to do it adequately and that it's the patient's job to trust them. So I think there are a variety of barriers at a clinician level and then I think there are some barriers or challenges for patients. So some patients may wish to put themselves in the hand of the clinician and simply say, you know, tell me. Doctor, fix me. Doctor, fix me. And of course, may actually even be resentful.
of the idea of a doctor saying, well, actually, I'm very unlikely to be doing most of the fixing here. Most of the fixing is going to be you. And what I can do is help you understand better and worse ways of handling your condition. But in the end, if you don't do the exercises or do the stretches or do the pacing, that's in your court. And so shared decision-making is actually an invitation for patients to be much more engaged themselves. And some of the barriers are around patients that want to be passive, want to be held, want to be simply looked after. But to share a decision, it means that we both have to be...
informed about the other if you like i as a patient need to know how you can help me and how i can help myself yeah yeah yeah we need a number of things we need the information that we can share together about what works and how well it works we also need to understand what matters to you if you think about any decision what's best for you might not be best for someone else it might be that you you know if we take a very simple example like taking a cholesterol lowering tablet a tablet that lowers your cholesterol which there's very good evidence is likely to reduce your risk of heart disease But it means taking a tablet every day and it has a potential for side effects. And some people believe, you know, I don't think for me taking tablets is what I like to do. I'm prepared to take that extra risk. The science would say everyone above a certain age with other risk factors should take one of these things. But the science doesn't take into account your preferences. So a good shared decision has to be about what matters to you. And you may not know what matters to you in terms of this particular decision until you've started to explore the territory with someone.
So your preferences at the beginning of a conversation about a treatment option may actually change as you understand the pros and cons, the benefits and risks of any one option. That's a good example because I am that person on the verge of taking a cholesterol-lowering tablet. I'm at the point where I'm getting pretty fed up of the medical profession, arguing amongst themselves and giving me conflicting advice, mainly through the media, not through... face-to-face health professionals. So does the medical profession need to get its own shop in order before asking me to help out on my decisions? Well...
Yes and no. I mean, I think, in a sense, understanding that there are not such clear options, welcome to the real world, patient. If you thought that you would come to me and I'd tell you, it's very clear, this works, this doesn't work, it's all very straightforward. Probably you've never experienced chronic pain, but I know you have had chronic pain, and that is a field where we know very little, where we're discovering lots, where lots of it's conflicting, where there are lots of different ideas going around. So it's messy. It's not straightforward. And actually, the science around lots of things is not straightforward. And at some level, if we are going to both be adults...
we both have to accept that it's actually a bit messier. I could pretend that it's all nice and straightforward and treat you like a child. And you could pretend to be a child and accept my unquestioning advice. And that's a world that we've maybe been in, but it's not a world that I'm interested in working with patients in. And that's not shared decision-making? No, no. Shared decision-making, you have to share some of the messiness, the fact that it is not straightforward. And in pain, it's particularly tricky, I think, because we have very poor evidence. And sometimes we find it difficult, patients and clinicians, find it difficult to actually agree.
about what the nature is of the problem. And if we can't even agree about the nature of the problem and the meaning and understanding we attribute to that, that wraps up that problem, then we're in trouble in terms of discussing what my options be. I think what we need to do is we need to try. We need to start that conversation. We need to start the effort of treating each other as adults, of exploring together what we do know, arriving at shared meaning, shared understanding, and then beginning to say, well, if that's where we're starting, these are some of the options, and this is what we do know about these options, and beginning to then be in a more collaborative place. And certainly in chronic pain, being collaborative is one of the fundamental... We really need that more than in many things.
That was Dave Thompson. I'll just remind you that whilst Pain Concern believes the information and opinions on airing pain are accurate and sound based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf. Yes, I know, I say that in every edition of Airing Pain. But I think it's particularly relevant to the amount of information and disinformation available to us at the click of a mouse key on the internet and social medium. How can we trust what we find on search engines and how can current and developing internet technology be used in the management of chronic pain? These are just some of the issues that a new special interest group of the British Pain Society will address.
I went along to the launch of this information and communication technology group at the Society's annual scientific meeting, where I spoke to Meher Siddas, who's clinical lead of Dorset Pain Management Unit and chair of the group, along with David Barrett, one of the committee members, and John Wirth, founder of Know Your Own Health, a provider to the group community. The internet and IT services can be very powerful in supporting people with long-term conditions and pain and so on. But what's key is that it actually doesn't replace human, warm human. equitable support, but what it can do is it can create the conditions and the foundations within which things can be organised better, information can be exchanged better, people can go and find the information that they're looking for, and access the type of support that they want.
That's the thrust of the work that we're doing. That's the thrust of it, but what does it mean to the patient? Speaking as a clinician, ICT has a lot to offer in terms of complementing clinical work done in hospitals and community care settings. So the website that John set up for us, for example, which is Soaring Above Pain Within the Doorset Community Pain Service, helps patients by providing lots of handouts, data sets that they've got from clinicians. So patients have those to access at home and can track their own goals and own progress in therapy and set up what they'd like as part of their recovery process from pain. And I use that word recovery in inverted commas because it has different meanings to different people, but it's very much a part of learning to soar above.
been, learning to get a handle on a grip on their being, and learning to live life meaningfully despite being in being. Yes, and what we've done is to use the technology to enable patients to communicate or see doctors online, but without having to leave their home. So if someone is in particularly bad pain and can't get out to see their doctor, they're able to do that online and still get the information and feedback from the doctor in a face-to-face situation, but using the technology that's available these days. I guess it's particularly valuable, as you say, for people who can't leave home, but for people in rural areas. Absolutely. I think this concept of telemedicine has been used out in the wilds of Scotland for some time. And it's certainly going to be useful to that patient group, I would have thought, for sure. And what we've done with My Clinic for Pain is to take that model that's been used. That was mainly for cardiac patients, but we've taken that model and extended it to be used in the pain area. Taking the human face away from...
a doctor-patient consultation. Is that a good thing or a bad thing? Well, it's not taking the human face away because they'll be able to see each other, as you would with, for example, a Skype or a FaceTime discussion. So you can see the doctor, the doctor can see you. And the beauty of it is it can be recorded and stored on the patient's homepage, if you like, for the patient to review at a later date. So if they've missed something that the doctor said, they can go back and look through the video again and pick that up and put it into action. So that's the start of it. And linking into what John's company does is to lead patients down the path of self-management.
using this as a tool to help the patients rather than to use it to drive what happens. So it's an assist to the doctor and the patient rather than taking over. Yeah, I mean, you can't assume that technology is going to answer the problem. It isn't going to answer the problem. What you need to do alongside the introduction of technology is to introduce work around systemic change and cultural change within the practices that you're kind of delivering. So it doesn't happen overnight. It's something that needs to be introduced to people, to patients, to citizens, who are more used to kind of just rocking up at a surgery and asking to be fixed. The opportunity with IT.
is to create an infrastructure that enables people to start to view their options and the things that are available to them, which include clinical services and other kinds of support they might be able to get out there. I glibly said it's removing the face, if you like, of the doctor. In actual fact, it could be viewed as bringing the doctor to you rather than you having to go to the doctor. I think that's certainly true from my own personal experience of seeing my own GP. We sit there in the room.
We don't make any eye contact. He's looking at his computer screen and talking to me and writing notes. Now, with my clinic for pain, you haven't got any choice. You have to see the doctor face-to-face so that you're both looking at each other with eye contact. So, I mean, in fact, in some ways, this might be even better than the situation in the doctor's office. There is no hiding. Absolutely. And it's all recorded, too, so it's there for everybody to see. And the CQC, as you can imagine, love that. The CQC? Care Quality Commission. You've just finished all the development work and you're going live. Now, what does that mean? How will it be rolled out? Well, it means...
doing some trials with a number of patients and making sure we can get rid of all the bugs that will inevitably be in the system and making it as easy as possible for people to use. Obviously, we've developed it in-house and we know how it works, we know it inside out, but of course the patient won't know that, so we're going to have to trial it with real-life patients and then see how things go from there and make the changes and improvements. And I think some of the ideas that John has got also will feed very much into what we're trying to do. The IT aspect is really just the means by which you set up infrastructure to enable people to access the care and support that they want. So David's solution might be one option of many within a range of options open to a person who's managing pain on a daily basis. What we're interested in primarily is what happens to that person in between their clinical appointments. So if you imagine between March and October, what happens to that patient between the March appointment and the October appointment? What are they doing in between times? They're self-managing. What options have they got that are available to them to increase and improve their self-management, to increase their levels of confidence and their skill and make good informed decisions about the types of medications and treatments that they might need?
or they could be receiving. You see, I think the term IT, information technology, is an outdated term. it is no longer static. What you're saying is absolutely right. What we're looking at in all walks of life, whether you're catching a plane or wanting to do your shopping, digital services are prevalent and they're going to be more and more prevalent within healthcare. So what do you need to do to enable digital services to work well within the very complex nature of healthcare? And our understanding and the work that we're doing is to identify...
how you manage the interdependence between digital services, clinical services, and the work that people need to do to self-manage their long-term health conditions. So those are three kind of core components that need to work side by side. It's a really exciting part of the whole healthcare landscape. It's something that's in policy, but very, very few people know how to deliver, know what to commission at the moment. There's an inevitability. That's the direction of travel. And I think the key to it is not to use it as a substitute for other means of treating patients, but as an aid. And that, I think, hopefully will take the fear away. It's not something that's going to take over people's lives. It's going to be part of their lives and to help improve their quality of life.
I'm Dr Jason Davis. I'm a consultant on East List in Auburn, and I run the pain service for Agile. Auburn, that's far north of Scotland? It's about 100 miles northwest of Glasgow. At the moment there is an initiative to try and see if we can better deliver our services to the more remote parts of our community, which are not well served, it would be fair to say, at the moment. And also that the work is done pretty much all by the patient. If they want to gain access to these services, for instance if you live on Islay or somewhere like that, you have to go to Glasgow. And Glasgow is better to travel to because you can actually fly there. So it's a less onerous journey. But it would be better if we could deliver, if they didn't have to travel as much, I'm not saying they wouldn't have to travel at all, but if you could actually deliver something effective, and I think that's the key word, deliver something effective locally.
then I would think there's got to be a good thing. But is travel the only benefit? Not necessarily. I mean, you know, obviously you're delivering a sort of secondary care type service, a more comprehensive service perhaps to the patients, but you're also supporting their GPs. So you're educating, you're supporting. There's lots of collateral benefits that you get as well. And face-to-face. Well, I like the idea of, yes, of actually seeing the person. And I think with the limited experience that we've had by telephone...
It may be that I'm a bit of a dinosaur in that respect, but I like to see people, I like to touch people, and moving into telemedicine, which has got to be the way to go, there is no doubt about that, it's a different experience for me, but it's also a different experience for people as well, because I think people like to be seen. It also, I guess, puts patients a little more in control. Which is where we want them. Because we know that if they take care of themselves, they take an active interest in policing their pain, then they do much better. So it's something to interest you? It has to be an active experience for them, yes, yes. I'm going to try and see if I can link up to our office in a minute to show you how the thing works. And it's just like a normal face-to-face conversation. Any notes that the doctor makes would appear in here. And if he's prescribed something, we run an internet pharmacy, so you can actually buy that from the pharmacy now. But it's also got patient information leaflets. This may be a bit difficult in the north of Scotland, but within a 10-mile radius of...
where you live, it will identify all the backup services that you need. So if you want, let's say, an app pepunchest near your house, then it'll give you the address and phone numbers. Probably not as useful for us. No, exactly. When it's up and running, it all sounds great. How do you get from not having anything?
to the point where... I mean, we do have broadband access to all the islands, because that was a Scottish Government priority. Yeah, broadband access and a laptop. Telemedicine is the way ahead for us. Because we can't physically be everywhere. Telephone is OK, it gets information, but you lose a lot of visual cues, you lose a lot of non-verbal communication, which can be quite relevant in terms of the consultation. At the moment, the patient questionnaire that we're using is a handwritten questionnaire, the questionnaire gets sent out, the patient fills that in with various scoring systems and whatnot, that comes back, and then we have a telephone consultation. Often that will either be quite clear where they're going.
or what needs to be done or what advice needs to be given. Sometimes it's not, and you have to bring them in. But you bring them in primarily because you want to see what's behind this sheet of paper. But there's no reason why you couldn't do that with this system online. The work that's going on is to produce a range of key benchmarks across, not just this group, but across the whole of healthcare delivery. It's a major priority within NHS England itself, the Information Directorate, and the way in which data is managed, that information is managed, and so on, is something that has increasing importance.
Within healthcare, we're working with a knowledge economy as much as we are with a healthcare economy. How do you manage that knowledge? How do you ensure that the quality of the information that a person is accessing is good? Anybody can type in a medical term and come up with a range of search returns. They have no way of knowing the value or quality of the information that's there. And part of the job of people like myself and the work that we do, and that this group does, is to enable people to access trusted, filtered information.
that is validated across a range of different groups and inputs. Well, is it enough to know that if it's part of the British Pain Society, then it can be trusted? No, because there's a phrase which says, and God we trust, all others must bring evidence. So I think the British Pain Study is as accountable as any other organisation, and for that purpose we set up a whole benchmarking system by which we can validate other websites if they want to be... recognised by the British Bain Society. We're actually working to revamp our own websites as well, to create a better web presence for the society, to make it a much more user-friendly website, so anyone anywhere living with Bain or clinicians working with Bain can come to us and actually say, well, how can you help us? And we can help them straight away. We've got a whole benchmarking process underway, and there's been a consultation with John's been a part of, David's been a part of as well. We've come up with seven criteria that we need other websites to meet.
So we want to know people's intervention capabilities, we want websites to tell us what they can and can't do, limits, so not to claim the earth that they can't actually deliver. Websites need to be inclusive in terms of development, in terms of including service users, engaging them not just as a reference group, but as part of the development of each web tool. Reference materials need to be included, because if you're publishing in a journal, you couldn't just say, this is what I think, you'd have to do evidence that, and websites don't have enough of that, so we need that to be revamped and done up. Websites need ongoing evaluation, and that has to be published, so users know what that's all about. Website user statistics need to be included as well, and disclosure of responsibilities has to be used in line with the HSCIC Information Governance Level 2, which I'm reliably informed all of us should be...
hearing too, and it has to be accessible for people with sensory difficulties. So all those seven benchmarking criteria need to be fulfilled for an external website to be recognised and nominated by the BPS as one that we would recommend. So is there something like the old kite mark that patients and professionals can recognise? Can rely on, absolutely. And we've also developed a social networking policy, because we believe that social networking should also happen responsibly within the BPS, so that's been taken all the way to cancelled and ratified, so we've got that in place. And we hope you're following us on Twitter as we speak, because that's up and about. So if I'm a patient and you have set me a care plan, how do I know that that is relevant for me?
Right. So, Paul, I'll take it one step back, if I may, and say that in actual fact, care plans should be set up with patients in collaboration. So we've never set up a care plan for you. It's very much with you, depending on the goals and objectives you want to meet as part of your treatment. So in the field of pain, there aren't any PROMS available, and PROMS stands for Patient Reported Outcome Measures. So other fields have them in terms of what outcomes are patients looking for, individual patients. Pain doesn't have one. So within the Dorsal Community Pain Service, we're working very hard to set these up, and we have four cornerstones of therapy, and those are personal development goals, such as emotional development, physical therapy and physical development, and fitness, sleep, diet, things like that. We have medication.
understanding pain as a third one, and then we have relaxation and working with leisure activities, hobbies, things like that. So those are the four cornerstones, and within that, patients identify what they want to work on. So the theme that we're trying to set up is to have that linking all the way from when a patient goes to their GP and says, help, I'm in pain. So GPs will have those, which will feed to all our 104 surgeries and door set. And then when we receive their referral forms, patients will identify what they want to work on. When they come for an assessment, the clinician will just stamp that in and make sure that's really what the person wants to work on. Then when they go and work with self-management, which is the website that John's developing, we'll have those on the website as well. So after the patient's journey, we're working with the same objectives that the patient has identified, because all too often what happens is they're...
is a disconnection between what GPs believe, what consultants believe and what someone else wants and the patients know where to be seen in the middle of that. So we're going to do away with all of that and have goals the patient identifies because they're the centre of the process. So I go along to my GP in Dorset. we identify that I have pain, and then what happens? The GP would say, what about your pain is the worst thing for you? Is it the pain itself? Is it that you're worried about pain? How do you live your life? Has it stopped you from doing things? Oh, no, but I'd go to the GP and say, I want to get rid of my pain. Absolutely. And that's the GP's job, because we talk to all the 104 surgeries we have. We have staff going out to educate and work with all the GPs on pain management. So GPs now know that it's not just about getting rid of pain, it's about living life around pain, intractable pain. So GPs then share that message with patients from step one. So patients no longer come to pain service saying, get rid of my pain. They're actually saying, right, can you lessen my pain, decrease my pain, and how do I learn to live with my pain? So that's the message we're sending out.
And that's a very powerful message. It's a very important message, sadly, because we have a magic solution or a magic bullet to take pain away. You know, we're left with self-management, so we have to do our very best to help patients learn to somehow cope with their pain. It's about helping the patient to take responsibility for their pain rather than the doctor taking over that responsibility, handling it on their behalf. This is about the patient taking control and managing their own lifestyle according to what they can do as opposed to focusing on what they can't do. And I think that's the key to it for me, is helping them achieve rather than not achieve. Yeah, self-management doesn't mean go away and get on with it. It means let's find a way of living with it.
and putting pain somewhere further down the list of issues. Yes, and there are a whole lot of other organisations there to help the patient achieve that. It's not one person on their own. And I think what MERSEN has achieved in Dorset is to bring all those agencies together for the benefit of the patient, not the benefit of the doctor. That's what's making a difference there, I believe.
Dave Barrett at the launch of the British Pain Society's Information and Communication Technology Special Interest Group. Don't forget that you can still download all editions of Airing Pain from our website. That's painconcern.org.uk or you can obtain CD copies direct from Pain Concern. If you'd like to put a question to our panel of experts or just make a comment about these programmes, then please do so via our blog, message board, email, Facebook, Twitter. All the contact information is on our website. Once again, it's painconcern.org.uk. There you'll also find details of Airing Pain's companion magazine, Pain Matters, which is available as an online subscription or direct by post.
Last words to Meher Sintaz, Clinical Lead of Dorset Pain Management Unit and Chair of the British Pain Society's Information and Communication Technology Special Interest Group. My heart goes up to every single person with pain because I think their courage is absolutely inspirational. Because if I was living with pain non-stop, I don't think I'd want to be in pain either. And I say to all my patients that I'm inspired by their brand of courage every single day.