Pain Concern

How shared decision making works in practice, plus, making IT work for people in pain and healthcare professionals

This edition has been funded by Pain Concern’s friends and supporters.

In this edition of Airing Pain we hear about how people in pain can take an active role in their care through shared decision making and technological tools.

‘Being collaborative is fundamental’ for managing pain, says Dave Tomson, a GP working on the MAGIC Programme (Making good decisions in collaboration). He speaks to Producer Paul Evans at the British Pain Society’s (BPS) Annual Scientific Meeting in Manchester about the advantages and challenges in developing an approach to medicine where decisions are made by doctors and patients together.

Technology can play a transformative role in empowering people in pain, but there are also pitfalls to be avoided. Jason Davies discusses the pros and cons of ‘telemedicine’ as a pain specialist working in the remote Argyll region of north western Scotland. Other members of the BPS Special Interest Group on Information and Communication Technology discuss the things patients and doctors should be looking out for when using online resources and the cultural change needed to make technology work – people in pain empowered to take responsibility for their pain.

Issues covered in this programme include: Technology, IT, policy, funding of pain services, patient involvement, telemedicine, remote/rural areas, online, web, internet, multidisciplinary, accessibility, access to health services, medication, side effects, collaboration, managing consultations and telephone consultations.

Contributors:

Dr Dave Tomson, GP
Meherzin Das, Clinical Lead, Dorset Pain Management Unit and Chair of the British Pain Society’s Information and Communication Technology Special Interest Group
John Worth, Founder and CEO of Know Your Own Health
David Barrett, Member of the British Pain Society’s Information and Communication Technology Special Interest Group
Dr Jason Davies, Consultant Anaesthetist, Lorn & Islands Hospital, Oban and Clinical Lead, Argyle Pain Service.

How shared decision making works in practice, plus, making IT work for people in pain and healthcare professionals

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In this edition of Airing Pain we hear about how people in pain can take an active role in their care through shared decision making and technological tools. ‘Being collaborative is fundamental’ for managing pain, says Dave Tomson, a GP working on the MAGIC Programme (Making good decisions in collaboration). He speaks to Producer Paul Evans at the British Pain Society’s (BPS) Annual Scientific Meeting in Manchester about the advantages and challenges in developing an approach to medicine where decisions are made by doctors and patients together.

Other members of the BPS Special Interest Group on Information and Communication Technology discuss the things patients and doctors should be looking out for when using online resources and the cultural change needed to make technology work – people in pain empowered to take responsibility for their pain.

Paul Evans: 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 has 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 effects 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 Thomson, 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.’

Dave Thomson: The MAGIC programme has been an implementation programme in hospitals and general practices to try and work with front-line 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.

Evans: So where are the barriers to shared decision making?

Thomson: There are 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 programmes versus cholesterol lowering drugs? Or in a pain context, we have very poor evidence about how many people given an opiate for muscular skeletal 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 professional, 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 hands of a clinician and simply say, you know, ‘tell me.’

Evans: ‘Doctor, fix me.’

Thomson: ‘Doctor, fix me.’ And of course [they] 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 gonna [sic] 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.

Evans: 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.

Thomson: 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 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 the 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.

Evans: That’s a good example, because I am that person on the verge of taking a cholesterol lowering tablet.

Thomson: OK.

Evans: I’m at the point where I’m getting pretty fed up of the medical profession arguing amongst themselves and giving me conflicting advice.

Thomson: OK

Evans: Mainly through the media. Not through face-to-face health professionals.

Thomson: Yeah. Yeah.

Evans: So, does the medical profession need to get its own shop in order before asking me to help out on my decisions?

Thomson: Well, yes and no. 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 straight forward’ – 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 and there are lots of different ideas going round – 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 can pretend that it’s all nice and straightforward and treat you like a child, and you can pretend to be a child and accept my… unquestioning… you know, advice. And that’s a world that, you know, we’ve maybe been in, but it’s not a world that I’m interested in working with patients in.

Evans: And that’s not shared decision making.

Thomson: 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 might options be.

But 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, you know, 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… you know, we really need that more than in many things.

Evans: That was Dave Tomson. I’ll just remind you that while Pain Concern believes the information and opinions on Airing Pain are accurate and sound, based on the best judgement 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.

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 media. 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 Meherzin Das, who’s clinical lead of [the] Dorset Pain Management Unit, and chair of the [ICT] group, along with David Barrett, one of the committee members, and John Worth, founder of Know Your Own Health, a provider to the group community.

John Worth: The internet and IT services can be very powerful in supporting people with long-term conditions with pain and so on. But what’s key is that actually it 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, you know, the information that they’re looking for and access the type of support that they want. That’s the sort of… the thrust of the work that we’re doing.

Evans: That’s the thrust of it; but what does it mean to the patient?

Meherzin Das: 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’s set up for us, for example, which is Soaring Above Pain within the Dorset 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 and therapy, and set up what they’d like to, 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 part of learning to soar above pain; learning to get a handle on, a grip on their pain and learning to live life meaningfully despite being in pain.

David Barrett: Listen, what we’ve done is to use the technology to enable patients to communicate [with] or see doctors online, but without having to leave their homes. 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 a technology that’s available these days.

Evans: I guess it’s particularly valuable – as you say for people who can’t leave home – but [also] for people in rural areas.

Barrett: Absolutely. I think this concept of tele-medicine 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.

Evans: Taking the human face away from a doctor/patient consultation; is that a good thing or a bad thing?

Barrett: Well it’s not taking the human face away because they’ll be able to see each other, as you would with a – lets for example a Skype or a Face Time 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 home page 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 it 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 using it to drive what happens. So it’s an assist to the doctor and the patient, rather than taking over.

Worth: 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 things that are available to them. Which include clinical services and other kinds of support that they might be able to get out there.

Evans: 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.

Barrett: Yeah, I think that’s certainly true. From my own personal experience of seeing my own GP, we sit there in a room, we don’t make any eye contact. He’s looking at his computer screen and talking to me and writing notes! Now this is clearly…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.

Evans: There is no hiding.

Barrett: Absolutely! And it’s all recorded too, so it’s there for everybody to see. And the CQC, as you can imagine, love that!

Evans: CQC?

Barrett: Care Quality Commission.

Evans: You’ve just finished all the development work and you’re going live. Now what does that mean – how will it be rolled out?

Barrett: 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 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.

Worth: 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, you know, 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, or that they could be receiving.

Evans: You see, I think the term IT – information technology – is an outdated term. It is no longer static.

Worth: 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 kind of 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 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 [that] very, very few people know how to deliver or know what to commission at the moment. There’s an inevitability that that’s the direction we’ll travel.

Barrett: 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’s, I think…hopefully we’ll 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.

Jason Davies: I’m Dr Jason Davies, I’m a consultant anaesthetist in Oban and I run the pain service for Argyll.

Evans: Oban, that’s the far north of Scotland?

Davies: It’s about a hundred miles north west 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. You know, 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 that 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 that, I would think, has got to be a good thing.

Evans: But is travel the only benefit?

Davies: 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 GP’s. So you’re educating, you’re supporting – there’s lots of collateral benefits that you get as well.

Evans: And face-to-face consultations.

Davies: Well, I like the idea 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 tele-medicine, 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!

Evans: It also, I guess, puts patients a little more in control.

Davies: 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.

Evans: So it’s something of interest for you.

Davies: It has to be an active experience for them – yes, yes.

Barrett: 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 could actually buy that from the pharmacy now. But it’s also got the patient information leaflets.

This may be a bit difficult in the north of Scotland, but within a ten-mile radius of where you live, it will identify all the back-up services that you need. So if you want, let’s say an acupuncturist near your house, then it’ll give you the address and phone number…

Davies: Probably not as useful for us.

Barrett: No, exactly!

Davies: When it’s up and running, it all sounds great. But how do you get from the point of 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.

Barrett: Broadband access and a laptop, you can do this anywhere.

Davies: Tele-medicine 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 clues, you lose a lot of non-verbal communication, which can be quite relevant in terms of the consultation. I mean 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 what not, 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’re bringing them in primarily because you want to see what’s behind this sheet of paper!

Barrett: And there’s no reason why you couldn’t do that with this system online.

Worth: The work that’s going on is to produce a range of key bench marks across – not just this group – but across the whole of healthcare delivery. It’s a major priority within NHS England itself, you know, the information directorate, and the way in which data is managed, that information is managed, and so on, is something that has increasing importance.

You know, 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 valuable 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

Evans: Well, is it enough to know that if it’s part of the British Pain Society, then it can be trusted?

Das: Ah, no, because there’s a phrase that says, ‘In God we trust, all others must bring evidence!’ So I think the British Pain Society’s as accountable as any other organisation and for that purpose we’ve set up a whole bench-marking system by which we can validate other websites, if they want to be recognised by the British Pain Society. We’re actually working to revamp our own website 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 pain, or clinicians working with pain, can come to us and actually say, ‘how can you help us?’ And we can help them straight away.

We’ve got a whole benchmarking process underway – there’s been a consultation which 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 a website to tell us what they can and can’t do – limits; so not to claim the earth, if they can’t actually deliver.

Websites need to be inclusive in terms of their 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 were publishing in a journal, you couldn’t just say, ‘this is what I think.’ You’d have to 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 adhering to. 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.

Evans: So, is there something like the old kitemark that patients and professionals can recognise…?

Das: …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 all the way to Council 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.

Evans: So if I’m a patient and you have set me a care plan, how do I know that that is relevant for me?

Das: 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’d 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 – but pain doesn’t have them. So at Dorset 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; physiotherapy – and physical development and fitness lead that, 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 thing 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 those which we’ll feed to all our 104 surgeries in Dorset and then when we receive their referral forms, patients will identify what they want to work on. When they come for an assessment will stamp that in and make sure that’s really what the person wants to work on. Then, when they go away and work with self-management with the website that John’s developing, we’ll have those on the website as well.

So, all through the patient’s journey, we’re working with the same objectives that the patient has identified, because all too often happens is there’s a disconnection between what GPs believe, what consultants believe and what someone else wants and the patient is nowhere to be seen in the middle of that. So we’re going to do away with all of that and have goals that the patient identifies, because they’re the centre of the process.

Evans: So, I go along to my GP in Dorset, we identify that I have pain and then what happens?

Das: The GP would say, ‘what about the pain is the worst thing for you? Is it the pain itself? Is it that you’re worried about pain? What do you… how do you live your life? Has it stopped you from doing things?

Evans: Oh no – but I’d go to the GP and say, ‘I want to get rid of my pain.’

Das: Absolutely. And that’s the GP’s job. Because we talked to all of the 104 surgeries we have… we have staff going out to ‘educate’ – in inverted commas – all the GPs on pain management. So the 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. The patients no longer come into the pain service saying, ‘get rid of my pain’ – they’re actually saying, ‘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.

Evans: And that’s a very powerful message.

Das: It’s a very important message, sadly, because, till 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 let patients somehow learn to cope with their pain.

Barrett: It’s about helping the patient to learn how to take responsibility for their pain, rather than the doctor taking over that responsibility and 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. I think that’s the key to it for me, is helping them achieve, rather than not achieve.

Evans: Yes – self-management doesn’t mean, ‘go away and get on with it’. It means, ‘let’s find a way of living with this and putting pain further down the list of issues.

Barrett: 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 Meherzin 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.

Evans: Dave Barrett at the launch of the British Pain Society’s Information and 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 Meherzin Das, Clinical Lead at Dorset Pain Management Unit and Chair of the British Pain Society’s Information Technology and Communication Technology Special Interest Group…

Das: You know, my heart goes out to every single person with pain because I think there courage is absolutely inspirational, because if I was living with pain non-stop, I don’t think I would want to be in pain either. And I say to all my patients that I’m inspired by their brand of courage each and every single day.

Contributors:

Dr Dave Tomson, GP
Meherzin Das, Clinical Lead, Dorset Pain Management Unit and Chair of the British Pain Society’s Information and Communication Technology Special Interest Group
John Worth, Founder and CEO of Know Your Own Health
David Barrett, Member of the British Pain Society’s Information and Communication Technology Special Interest Group
Dr Jason Davies, Consultant Anaesthetist, Lorn & Islands Hospital, Oban and Clinical Lead, Argyle Pain Service.

How pain affects the relationship between adults and young people and tips from a family therapist

This edition has been funded by the City of Edinburgh Council and NHS Lothian’s Self-directed Support Innovation Fund.

In the second of our two programmes focusing on young carers for people in pain, we hear about the effect of pain on relationships between parents and children.

Family therapist Liz Forbat explains how pain can disrupt transitions from childhood to independent adulthood, especially during those difficult teenage years. She discusses with presenter Paul Evan’s his ‘martyrdom’ approach to managing chronic pain – he recalls keeping his children at a distance from it – and the dangers of building barriers between family members in a bid to protect them from the effects of the pain.

We hear the young person’s perspective from Kim Radtke, who grew up with a father often made irritable and emotionally unavailable by his ankylosing spondylitis. The situation was exacerbated, Kim says, because she and her brother did not fully understand the condition and were therefore unable to empathise and communicate with their father about it. Only as an adult has she been able to make the step – so important, according to Liz Forbat – of separating the pain from the person.

Issues covered in this programme include: Family therapy, children and young people, relationships, parents, young carers, ankylosing spondylitis, psychology, communicating pain, siblings, school, anger, frustration and feelings of martyrdom.

Contributors:

Kim Radtke
Liz Forbat, Family therapist andReader in Cancer and Palliative Care, University of Stirling.

More information:

To find a qualified family therapist or for more information visit the UK Council for Psychotherapy website: psychotherapy.org.uk

How pain affects the relationship between adults and young people and tips from a family therapist

To listen to this programme, please click here.

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In the second of our two programmes focusing on young carers for people in pain, we hear about the effect of pain on relationships between parents and children.

Paul Evans: 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 edition has been funded by the City of Edinburgh Council and NHS Lothian through their self-directed support innovation fund.

Now, this is the second programme looking at issues faced by young adults when a family member has chronic pain. Previously we heard Erin McGuigan’s story of how her condition impacted on the lives of her siblings. We also heard how members of the Scottish Youth Parliament are pushing for change in the support received by young carers through their Care, Fair, Share campaign. In this edition, I’ll be looking at the importance of good communication when that generation gap seems too wide to bridge.

Liz Forbat: Teenagerhood is the most difficult developmental stage, it’s the most difficult stage of life. They’ve a great capacity, I think, to feel and to begin to understand their place in the world.

Kim Radtke: We kind of had an idea that, you know, that he had a lot of pain, and things like that, but the actual scale of it and how much of an impact… was really difficult to understand.

Forbat: They’re in the position of not being children, not being adults, but experiencing these big issues, with a parent or a sibling, that’s impacted by pain. Whether you conceive that as difficulties in having attention taken away from them, or just about this extra lump of difficult life stuff to deal with, on top of being a teenager; I think it’s a really tricky position for them and for the parents and other siblings.

Evans: Liz Forbat is a research psychologist and family psychotherapist. She researches into physical health problems at the University of Stirling and works as a therapist with families, individuals and couples whose lives are impacted by those physical health problems.

Forbat: Ordinarily I think, health services are organised around individuals with the disease. And we see that in the National Health Service and in private care, where it’s the individual that receives the service. But actually we can only really understand the impact of the ill health if we’re looking at the family more widely.

So, whenever a diagnosis comes into a family, you see ripple effects on everybody else within that. So if somebody receives a diagnosis of cancer, for example, or has persistent pain, chronic pain, what you’ll see is that that impacts not just on the individual, but other family members. So that might mean that it restricts activities, not just for the individual but for the wider family. Or it may be in terms of how they relate to one another and what becomes important within that relationship.

We’ve done work around children with life-limiting conditions where pain’s very often a part of that. What you do see, and what’s very clearly evidenced in the research literature, is that siblings are put in a position where they’re growing up faster. So they might be old beyond their years.

In families where that becomes difficult, and it can for all sorts of reasons, you might see siblings adopting all sorts of different ways of communicating how that impacts on them. So you might see, for example, school refusal coming into play. And that comes about for a number of different reasons. So, for example, if you’ve got a child, a young person with some sort of pain condition, persistent chronic pain, and other siblings in the family taking on a role of looking after them…

Now that may not be physically looking after them. It may not be what as adults we identify as being a ‘carer’ role as such. But where a young person starts to feel like they are responsible for the emotional or physical well-being of someone else and taking on that role – and what you might end up seeing, what we’ve seen in research and somewhat in clinical practice – is that siblings may start to say they don’t want to go to school, and to find ways of staying at home. And that’s not necessarily because school is dreadful and awful, but it’s because they really like they’re tied to the home and tied to the sibling, so that they can offer that ongoing care and support.

We’ve done work with siblings where the well sibling has gone into school and basically can’t concentrate all day, and spends the entire time thinking about what’s going on at home – are they [the ill sibling] getting the nurturing and care and support that they need?

And that’s regardless of whether or not there are adults around that can manage that, you know, but it’s the responsibility that’s internalised and then acted upon by these siblings. So it has a profound effect on all sorts of things. It might come out as school refusal or school avoidance or whatever, but actually, what we know from the evidence from clinical and from research evidence is that that comes from a way of relating to and wanting to relate to the person with the pain condition.

Evans: Kim Radtke, originally from the United States, now lives in Edinburgh. Her father has ankylosing spondylitis and rheumatoid arthritis.

Radtke: He’s had it for at least 20 years, which means that I was about six or seven when he was initially diagnosed. And for a long time, it really didn’t make any sense to me. It was very difficult to understand why he was so angry all the time, because he always was, he was very angry. And again, when he worked nights, we wouldn’t go to a childcare centre or something during the day, we’d just stay at home in the summer time when school was out and kind of creep around the house quietly. It was kind of this game of ‘don’t wake the bear’, where if you woke him up he would be just so angry – disproportionately angry – and as children that was just really difficult because you didn’t understand what you had done wrong necessarily or why he was so mad. And it was, you know, it was very hurtful.

It was very difficult for my mother. A lot of times, for family functions or things like that, we would try and plan in advance things to do, and then he wouldn’t be able to follow through on a commitment he had made, or just being able to go to things. I really didn’t understand as a child why my parents didn’t separate, because I always saw my mum being really sad or upset with the way that things played out and I just couldn’t understand why she would put up with that and why she, or how she, could still love him, despite him being, you know, really difficult and angry and letting her down like that.

And it took me until I was an adult to really understand that the frustration involved in that whole process of letting people down – it’s not just the anger that you [feel] or the frustration that’s from the other people around you, but it’s also, you’re frustrated [laugh] because there are things that, you know, you want to be doing these things, you want to be able to make commitments, and it’s not just the things that are important to other people that you end up missing out on, it’s things that are important to you as well.

Evans: And anger is an instant thing, it’s a now thing. But resentment festers.

Radtke: Yeah. And I think that’s something that’s very marked in my family as well, because my brother hasn’t been able to form the kind of relationship with my father that I’ve managed to get. And part of that is because he left the household – he’s a few years older than me – so he left the household a few years before I did. And it wasn’t until I was kind of in my mid-teens – and about the time that my brother left the house – that they finally got an effective treatment regime for some of his pain. Once he started that, there was for him something of a marked difference in his ability to actually just participate in our lives a bit more.

But, because I had those couple of extra years in the house, overall, now even, my relationship with our father is much better, because my brother never had that chance to live with him when he wasn’t in that kind of reactionary mode, where, you know – ‘I’m in pain, this is…’ – you know, that reaction, where my brother still has a lot more of that kind of lingering resentment of, ‘you’re always angry for no reason’.

Evans: But you’re talking as if the drugs have cured the problem

Radtke: They haven’t, they haven’t cured the problem. It was the first thing that actually made an impact on his pain and that was a decade after being diagnosed. He finally got something that for a couple of years made a difference. But having that couple of years where he was in less pain and able to do better managing his pain did make a big difference in our ability to form a relationship and I’m quite sad that my brother didn’t have that chance or that experience as well.

Evans: Kim Radtke. Now, at the start of this programme, Liz Forbat described the teenage years as the most difficult stage of life. Parents might argue that it can be as difficult to live with a teenager as it is to be one. There may also be younger children in the family. So, how would a family therapist deal with the different and maybe competing issues of each age group?

Forbat: One of the lenses which family therapists use is to think about life cycle issues. And by life cycle issues, I mean that you’d approach the family and each member within the family and try and understand what was going on for them in terms of their usual developmental cycles. So for example, you’d expect age five to be heading into school, age 16 to 18 heading out of school and then somewhere around early adulthood, maybe entering university or the workplace and that sort of stuff.

So what you’d be looking at is, does this existence of persistent pain within the family, does that impact on any of these life cycle transitions? So in early adulthood, you’d be looking at, does the existence of this pain condition and the difficulties around that, is that pulling that young adult back into the family and is it disrupting regular life cycle patterns that you’d expect to see?

John Rolland, who works in the States in Chicago, talks about centrifugal and centripetal forces. And I don’t know if you remember any of that language from chemistry at school

Evans: The centrifuge pushes everything to the outside.

Forbat: Yeah, exactly. So centrifuge is a kind of, splat everything out with, and centripetal kind of pulls things towards the middle. So if you imagine a cylinder, and family members within the cylinder, and forces either push people away to the outside of the cylinder or into the centre of it – that becomes the centripetal/centrifugal forces. So this model helps us think about what happens when illness and pain comes into the family: does it push people away or does it pull them in? And often what we see in young adults is that they get pulled back in, and they get pulled back in to the centre of the family and around the individual with the physical health problem. And that that might be seen as unhelpfully disrupting some of the regular patterns that you’d see, with somebody leaving home and going off to university, or maybe setting up their own family and so on.

So that might be one disruption. I guess another disruption might be at other points in time with these forces, about a centripetal force, where people get pushed away. And that might be with the ongoing presence of persistent pain, that it becomes a real difficulty for other people to continue to witness it and to often feel very powerless to do anything about it and to feel like they can do anything to intervene and lighten this for the individual. So you might see that also at those critical life junctures that people feel like they’re being pushed away. So you might see somebody making a decision to not live and work and study or get a job in the local area but suddenly feeling like they want to go as far as they can.

Evans: Family therapists talk about centrifugal and centripetal effects in families, where the centrifugal force pushes things out to the outside; the centripetal force drags things into the centre. It sounds to me as if you and your brother are one and the other of those.

Radtke: I would definitely agree with that. And it plays out in our larger family as well, where my mother’s family, so her brothers and sisters, her parents, they really had a much better grasp, I think because my mother spoke with them, about what was going on and they had a much better communication thing. So, they were much more accepting of – ‘yeah, he can’t be here today’ – and were gonna be forgiving of that. Where his family, probably partly because he didn’t communicate with them in the same way as I’m saying my mother did, they didn’t get it and they were quite hard on him.

Evans: You talked about wondering why your mother didn’t leave your father. That may the level of understanding of a child looking at their parents. In retrospect, can you see why your mother didn’t leave your father?

Radtke: Yeah, I can. They have a very committed relationship because – he was quite young, he was in his mid-twenties when he was diagnosed with rheumatoid arthritis – so it was, you know, accepting this as a part of him. But also, throughout the process of coming to understand his pain and being able to separate that from who he was; as children, that was just something that we couldn’t understand. And being able to see who my father was when he was being himself and being pain-free, and being able to see the pain as a separate part of him, different from his personality, different from his normal thought process, that, as I’ve become an adult, it’s something I’ve been much more able to appreciate. And again, as a child, I just didn’t have that concept: he was who he was. Obviously her understanding of that was much better.

Evans: They obviously talked to each other. They communicated well.

Radtke: They did communicate. I mean you have to, you have to be able to work together, or the relationship wouldn’t have worked out.

Evans: It sounds to me that pain was in the house. And maybe your parents were dealing with it, but they didn’t realise that their children, you and your brother, weren’t dealing with it.

Radtke: Yeah. I would say that that’s probably true.

Forbat: Communicating with each other about the pain, the impact on everybody within the family system is an important thing to do. That’s not to say that the same kind of communication is the right thing in every family – I know my family communicates in a different way than my husband’s family and that that’s right for my family and his family’s version is right for them – so I don’t think there’s a correct way of managing that. And the decisions around that would have to be based on each individual family’s history of how they talk about illness, how they talk about supporting each other – what their historical approach to caring for each other looks like. So I think making sure that family members feel like they can talk about it and get it out in the open, rather than being something that only one individual has to cope and manage and deal with on their own. To make it something that the family own as a whole and can manage as a whole is important, but I don’t think there’s one right way of doing that.

Evans: You see, with my experience – I have chronic pain and have had so for 25 years… and my children have grown up through it – looking back at how I dealt with it, I kept it very personal to myself, but it did break out in anger. They had to push me over that tipping point and I would explode and create an atmosphere and then it would be gone, at least I thought. Is that a correct way of going on with it?

Forbat: Well like I say, I don’t think there’s a correct way. It sounds like if you’re labelling it as anger, then it didn’t feel right in retrospect. Looking back, it sounds as though you think there might have been other ways of managing that. I guess what you’re talking about is something that’s very typical of families affected by ill health, persistent pain being one of those elements, which is, the person with the condition holds the stress of that for themselves and they’ve worked really hard on protecting their family members from knowing about it.

Evans: It’s my condition, I’m going to manage it.

Forbat: Yep. And some of that’s about ownership of it and some of it’s about protecting other people and thinking, particularly with children – and spouses I think too – that the individual with the condition wants to just manage that on themselves. And there’s a label for that.

Evans: Martyrdom?

Forbat: [Laughs] Well martyrdom works! The psychological label’s a bit different. We refer to that as ‘psychological buffering’. We all know what buffers are and it’s a way of protecting and creating some space between… And we see that a lot in therapeutic practice, where the individual with the condition tries to protect other people from it. But what that doesn’t recognise is, other people within the family are impacted and that the buffering actually just creates a barrier rather than a protective barrier. And so the anger response is from when things get higher than the buffer is. So if the buffer is 6ft or 60ft tall and suddenly the burden and the pressure of the illness is just a millimetre above that, that’s when that pores over into anger.

Radtke: Right now, one of my biggest concerns about my father is with the prolonged use of steroids. He has put on quite a bit of weight, he’s had difficulty managing his weight, and so I do worry that he will develop diabetes or have a heart attack or something like that. And so I do try and discuss that with my brother and he’s very much less willing to communicate with my father about anything regarding his health. They’re not part of the way he interacts with our parents.

Evans: But conversations aren’t just one way. I can remember with my own mother, who had very, very bad pain at the end of her life, and sitting down with my mother, knowing full well that she was dying and in a lot of pain – but my father having been forbidden to speak to me and my brother about what was wrong – and sitting down with my mother as we are now, eyeball to eyeball: ‘Mum, what is wrong? Can I help?’ And she saying, ‘No, nothing wrong.’ Many parents do find it difficult to talk to their sons; daughters are easier.

Radtke: Yeah. [Laughs] And again that kind of gets into our gender stereotypes of how we actually interact, but that may be a big part of it. My parents don’t broach the subject with him either, because they know that I have a lot more interest in finding out about it and keeping up to date and being able to be there for them, they do now talk to me a bit more about it.

Evans: So they accept you being there for them.

Radtke: Yes. They do now. You know, if my mum’s having a really hard day, being able to put up with him being cranky or something like that, she’ll call and just have a bit of a whinge about it. Because you do need to, as someone who is the carer, have that space to be able to talk about it. And I’ve really spent some time pushing my mum to talk about it with someone. Obviously you need to have support for yourself as a carer.

Evans: It can be very cruel – and I use that word advisedly – it can be very cruel on a young adult carer, on a son or a daughter, when they’re frozen out of their parent’s pain condition – for the best possible reasons – to protect the children. But it can be very cruel for the child, in my opinion

Radtke: I would agree with that and I think, particularly my father and my brother, would do some of those typical father/son bonding experiences; they were both sportsmen so they would go fishing quite a bit. And so I think it was really difficult for my brother as a young adult when my father and my brother would plan some sort of activity, like plan to go fishing or something like that, and my father would be having a bad day and he wouldn’t be able to get into a boat and sit there for hours… Because they didn’t have that kind of communication, you know, my brother, he would feel rejected – and I think he still carries a lot of that with him and if they had talked about it more, I know that their relationship now would be better.

Evans: I used the term ‘martyrdom’, ‘martyr’, and we both had a laugh about it – but it is a serious comment isn’t it? If I were coming to you with this issue, how would you start with me?

Forbat: The start would be to understand the history of pain. And some of the ways in which I might start a conversation around that would be to ask you – when did pain first arrive in your life? when is pain at its strongest? when does pain find itself to be most powerful in your life and relationships? And if you were coming with your family, that would be something that we could open up to other people. So, who is it in the family that notices when pain is most difficult for you?

Evans: As the martyr in the family with pain, I would say, it’s me. I would be oblivious to what is happening around me with my three children, with my wife, with my parents indeed.

Forbat: Oblivious to the impact on them, do you mean, or…

Evans: Yes. It’s my pain. I’m suffering for this, not them.

Forbat: Yeah, and that’s a really difficult position, I think, if one person in the family feels like it’s just their burden. Depending on what the session felt like, it may be that I would invite the person that was in the martyr position to take a listening role. What I might do in that situation is think about a conversation with the other people in the family that were in the room and to ask them about what was going on for them. And to invite the individual with the pain to sit, to listen and to then maybe reflect with me about what they’ve heard. So, what that does is to open up a different way of understanding what’s going on.

Now I know that can be a very difficult and challenging position. That wouldn’t be what I’d do in a first session. I think there would be a need to build up a relationship with the individual, because I think that’s a very challenging position to be in – just sitting and hearing what pain looks like to other people. But that might well be a way of challenging this idea that it’s just one person’s burden, if you like. I think, from a first session perspective, what I’d probably do is to look at the strengths within the family and how it is that as a team, you could gang up on pain.

Evans: Ganging up on pain as opposed to ganging up on the person?

Forbat: Yeah. So we leave you out of this. And we try and separate pain from you. You’re not pain; you have pain, but you are not pain. So tell me about the time before pain came into your life: what was life like for you at that point? Was it in your life when you met your wife? Was it in your life when you had your children? And to tell me a bit about who you were before pain arrived in your life and to map out some of that – to understand you as an individual as separate and distinct from pain. And whilst understanding that [whilst] actually it feels very integrated at the moment… and by doing that, by separating person from pain and seeing the problem as the problem, not the person as the problem, you can build up a team approach, thinking about the strengths that other people in the family bring, that can help get rid of pain or can help keep pain in its place

Evans: Staying with a martyr theme – let’s turn the tables round and the person without the pain, the young adult – whose parent has pain – he is now the martyr. How do you deal with him or her?

Forbat: So the young person is the martyr because their life has been so impacted by…

Evans: They can’t go out in the evening, they can’t go on their skiing holiday to Austria with the school, they can’t go camping with their friends, can’t go to football on a Saturday afternoon. You know, they’re getting hammered by mum’s pain.

Forbat: It doesn’t really make much difference whether or not it’s the young person with the pain, or the parent with the pain – it’s starting to understand that pain can be seen as separate to, and impacting, everybody in different ways.

Evans: If, with the benefit of hindsight, we can’t take your father’s pain away from him, but we could deal with it as a family differently, how would you do it now?

Radtke: I think that, when there is an initial diagnosis, to sit us down and actually talk over what the condition is and what it means and then just to overview what the impact will be. Because for them to say, ‘Oh, he’s got arthritis – and, you know, that means that he’s going to be in pain or whatever’, we didn’t understand that that would mean that it would affect his sleep or these knock-on effects. And it took me a long time to realise how the pain effected his personality and the way that he related to people, both within our family and outside our family… I mean it did, it affected everything. And just spending more time making sure that everyone understands what that can actually do.

Everyone’s needs will be changing throughout the process, and you have regular check-ins – and I think that’s one of the important things – to make sure that everyone gets a chance to say how it’s impacting them. Just to have a more thorough conversation and to do it regularly instead of just when something’s wrong… to check in and talk about things when they were going OK, when they were going bad and when they were going good, just to have lots of communication about it.

Forbat: Retrospect – you know, hindsight is 20/20 – but by speaking to the people that feel a little bit further on than you and learning from them about what they would want. I guess as a family therapist I’d say maybe you should all think about family therapy, maybe that would be helpful?! That’s not for everybody, but I think certainly being exposed to other people with personal experience – you know, people who are experts by experience – that’s a really powerful way of enabling some of that learning and to short-circuit some of that for people.

Evans: How would I find a family therapist? Or, how would my wife find a family therapist? Or my children?

Forbat: Family therapists are ordinarily registered on the UKCP, the UK Council for Psychotherapy, website. You might also find other practitioners registered on other professional bodies. So you’d be looking at somebody that’s registered as a psychotherapist and that means that they’ve undergone appropriate training, they get supervision and continue with their professional development and so on. So you’d be looking at maybe UKCP websites to find family therapists.

Evans: That was family psychotherapist Liz Forbat. And the UKCP – that’s the UK Council for Psychotherapy website – is psychotherapy.org.uk. Now, Pain Concern has also launched specific services to support young adult carers: through these programmes; its forum, where you can connect with your peers; articles in Pain Matters magazine and information leaflets. All details are at our website, which is painconcern.org.uk

I have to 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 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. Don’t forget that you can still download all editions of Airing Pain from our website, once again, it’s painconcern.org.uk. Or you can obtain CD copies direct from Pain Concern.

So, to end this edition of Airing Pain, I asked Kim Radtke for her advice to young adult carers who find themselves in the same situation that she found herself in…

Radtke: Try and get some information for yourself. Go out and see what you can find so that you have a base knowledge of what’s going on. From there you can say that, you know, ‘this may not be you, this is you with pain and that is different.’ We have to acknowledge the presence of pain. Once you acknowledge it, you can actually start to work on its impacts on your relationships and on what you’re doing with your life and how you are relating to everyone around you.

Contributors:

Kim Radtke
Liz Forbat, Family therapist and Reader in Cancer and Palliative Care, University of Stirling.

More information:

To find a qualified family therapist or for more information visit the UK Council for Psychotherapy website: psychotherapy.org.uk.

The experiences of young people whose family is affected by pain and a campaign to help improve their lives

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Lost childhood, financial burden, emotional turmoil and guilt – these are some of the challenges facing young people who care for people in pain on top of the caring itself. They’re often left feeling invisible, going unrecognised and unsupported for years.

In the first of two programmes putting young carers centre stage, Paul Evans talks to a family about how pain has affected their lives. Erin McGuigan was hospitalised after developing debilitating pain in her limbs and now uses a wheelchair and crutches. She explains how her condition has affected her brother and sisters. Her sister, Donna, talks movingly of her feelings of powerlessness, how she has encouraged Erin, and the need to keep listening and understanding.

Terri Smith a Member of the Scottish Youth Parliament (MSYP), explains why and how she is campaigning to improve the situation for young carers. Hours of freely-given care save the Scottish Government £1.4 billion a year, but often leave young people struggling to stay in education and financially insecure.

Issues covered in this programme include: Young people and children, family, relationships, economic impact, school, education, young carers, financial support, foot pain, peer support, policy, leukaemia, financial support and travel cost.

Paul Evans: 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.

Chronic or persistent pain has no cure, unmanaged it imposes a huge burden of suffering, devastating the lives, not just of the person with the pain, but the whole family. In this, the first of two programmes funded by The City of Edinburgh Council and NHS (National Health Service) Lothian through their self-directed support innovation fund, I’ll be looking at issues faced by the often invisible or forgotten members of those families: the children and siblings of those with pain – their young adult carers.

Erin McGuigan: Because I was the one suffering, he didn’t want to draw any attention to himself. You know, everybody was so focused on trying to help me and support me, but maybe he needed more support really.

Terri Smith: Young people are compromising being young people by having caring responsibilities. They save the Scottish Government £1.6 billion annually. Caring shouldn’t mean compromise and we should be supporting young carers financially throughout their lives.

Donna McGuigan: When she was in hospital I was there visiting almost every night and I felt like I couldn’t do enough, you know, cos I couldn’t take the pain away. So I suppose I did have to distance myself a wee bit. It was too hurtful, you know, to be there but not to take the pain away.

Evans: Just some of the burdens faced by young people when chronic pain enters the home. The pain, of course, lost childhood, financial burden, emotional turmoil and, dare I say it, guilt. All at a time when bodies and minds are going through the upheaval of growing into adulthood.

Erin McGuigan has three sisters and one younger brother. She’s had chronic pain for around four years, since she was sixteen. I met her at her Edinburgh home with mum Lorna and older sister Donna. This is their story, starting with Erin.

E McGuigan: I just got it, just out of the blue, I was fit and healthy and I was walking one day and suddenly had a pain in my foot and it just developed from there. And then gradually I wasn’t able to weight bear on my foot and it was very cold and discoloured and then I had that for a few months and then it spreaded to my left arm as well and then it got worse and spreaded to my right arm. And I was hospitalised for about eight months and I wasn’t able to feed myself or get a drink or anything and had to get all care needs met by the nursing staff.

It’s affected all aspects of my life really: it affected my education; social life… I use a wheelchair most of the time but sometimes I can manage to walk with crutches but just for short distances, before the pain gets really bad.

Evans: Now some people talk about pain, when pain comes into a family, when somebody in the family has pain, some people talk about it having a ripple effect, like when you throw a stone into a pond and it ripples gently outwards. Has that happened with your family, do you think?

E McGuigan: Yeah, I would say that it’s had an effect on all of us. More so on my brother, because he was living at home and a lot of the time we would have to visit hospital at nights – he could wake up and me and my mum aren’t there because we’ve had to take a trip to the hospital, things like that. A lot of the time my mum has to care for me, so she’s not got as much time to spend with him because she was caring for me. And emotionally it can be upsetting seeing family members in pain and not being able to help. Lots of times he has to administer medication to me and he’s good and he’s understanding but when we went to Bath he had to just live on his own for three weeks really. There’s times when we have to go to the hospital and some days he can wake up and we’ve had to go to the hospital in the night, so it can be lonely for him.

Evans: Mum, the ripple effect, was it a ripple?

Lorna McGuigan: It was a bit of a tsunami [laughter]! I had to take three months off my work to care for Erin initially. And the effect, as she says, on her brother and sisters: we didn’t have as much time for them; they didn’t know where we were a lot of the time when we were visiting hospitals. Financially as well it had a huge effect: we had to sell our house and adapt this house for Erin’s needs. She now has full time care in place, so she has carers in the house, so that in itself has an impact on the other family members and there not as at ease in their own house as they should be.

E McGuigan: It can change your personality a lot and when you’re suffering pain you might snap at your family when you don’t mean to. You feel frustrated and you might take it out on your family, so it can affect the relationship as well. But in a sense it can also bring your family closer together because you know that you’re all there to support each other.

Evans: Donna you’re Erin’s sister – you’ve known Erin before the pain – what changes have you noticed in her?

Donna McGuigan: I think she lost a lot of her life. She’s not had a normal teenage life. She missed out on a lot of her teenage years. She was always very bubbly, you know and always very energetic. And now she can’t do a lot of the things that she could do before. And she was always very, very patient as well – she does suffer from frustration because of her limitations, because of the pain, like she’ll be saying she has to pace herself. And sometimes it’s understanding that, if you are out or if you are doing things, understanding how she feels and that the pain is impacting her. She could be tired but she holds back, she wants to be involved and make the most of the situation and her life, because that’s the kind of person she is.

Evans: She must be very frustrated, but you must be very frustrated as well?

D McGuigan: It is…it’s horrible, [crying] nobody deserves that, nobody deserves to go through what she’s been through.

Evans: Mum how do you hold the family together?

L McGuigan: Just got to keep going [laughs]! I think it’s very hard: when it’s an illness that you can see a cure for, you can see a way forward; when you’re diagnosed with chronic pain you think this is it for the rest of her life and there didn’t seem to be any way forward at that point.

Evans: Donna has obviously told us now of the effect and the effect is coming out now. How have you coped with that?

L McGuigan: Some days I’ve not! [laughs] Some days we’ve all struggled to cope with what’s happened to Erin, but you just have to keep going, you just have to believe that what you’re doing is right. I know sometimes, I’ve not been there for the other kids – I have another three kids – and I know sometimes I’ve not been able to support them when they’ve needed support. And sometimes I’ve always put Erin first, that’s difficult as well as a mother, to know that your other kids maybe need you and you’re not able to be there for them, that’s hard.

Evans: The Bath Centre for Pain Management Services, part of the Royal National Hospital for Rheumatic Diseases, provides residential pain management programmes for adolescents with chronic pain, like Erin. You can download Airing Pain programme 10, from painconcern.org.uk to hear more about it.

Patients attend for three weeks, with an accompanying adult, usually a parent. Erin’s mum Lorna again:

L McGuigan: I was determined Erin would get all the help she could get and I pushed and pushed for her to get to go to Bath. I didn’t really realise the financial implications of flying down there, being away from home for three weeks at a time; the implications of walking out of your work for three weeks. It is a massive implication on the family, leaving behind your family, leaving your work for three weeks and just walking out the door and concentrating on one child. And using all your savings for flights and taxis… [laughs] that was a huge thing. I think moving forward hopefully people won’t have to travel as far in the future and that would be such a good thing, a positive thing.

Evans: Now Erin’s had help through the residential pain management programme in Bath, but that still leaves four other children who should get support. Have they had support, other than from you?

L McGuigan: No. Gran and Grandad are very good and they all pull together. We went down to Bath – it’s hard leaving your brother and sisters behind. Donna came down for a weekend, Kerry cam down for a weekend to spend time with her, but it was very hard on them. And I was very lucky – lucky is the wrong word – that they were older; I don’t know how I would have done it if I’d had younger children. I don’t know how I would have coped if I had younger children. But you expect because they’re older that they’ll just deal with it, but it was hard on them as well.

Evans: Donna, what sort of help do you think you could’ve had?

D McGuigan: I think it’s more understanding the daily battle Erin has to face and understanding the condition. Like my mum said at the time, when she first suffered from chronic pain, nobody knew, the medical profession didn’t even know, how she could manage it better. So it’s understanding what she’s going through. There are times when she needs encouragement, as everybody does, and there are times when she needs to be left just to take it at her own pace, just to take it easy. So it’s understanding that to be honest.

Evans: Yes, but you keep on talking about Erin, not about you and your brothers and sisters. What help do young adult carers like you need?

D McGuigan: You’re asking the wrong person.

Evans: No, I’m asking the right person.

D McGuigan: Yeah, I suppose at the time when Erin was in hospital, if you were talking to people like your peers or outside of family, they couldn’t contemplate what it was we were going through, so I suppose speaking to other people who were going through the same thing would offer comfort and support.

Evan: There are an estimated 100,000 young carers like Donna and her brothers and sisters in Scotland alone, many of whom are selflessly helping others without a thought for themselves. Donna has highlighted the importance of social and peer support. But young adult carers, particularly those in low income families, also face financial barriers. These are issues being addressed by the Scottish Youth Parliament Care Fair Share campaign. Terri Smith is MSYP, that’s member of the Scottish Youth Parliament, for Edinburgh and Northern Leith.

Terri Smith: Care Fair Share has got three objectives, the first ones about making the Education Maintenance Allowance… a bit more clarity in the wording that the Scottish Government give guidance to the local authorities, so we are just looking at making that stronger and more clarified, so local authorities implement it as well. Our second objective is about making a bursary available to young carers, to those who are at college or university. The third part is for travel concession, making it more available to young carers, so it’s cheaper ‘cos they have to get from A to B, if they’re in financial hardship they may find that difficult.

Evans: So, going back to objective one, an Education Maintenance Allowance, what does that mean?

Smith: It’s a £30 payment that young people receive every week for attending school or college.

Evans: Now that sounds like a very good thing, but from what I remember the rules for having that were quite strict on attendance?

Smith: Yeah, it requires a hundred per cent attendance for you to receive your EMA payment, which is given fortnightly.

Evans: It seems to me that a young carer can’t guarantee a hundred per cent attendance [No] because he or she will have caring duties.

Smith: Of course, sometimes they’ll miss the odd class at school, or full day, or even being late for school, again, takes away your hundred per cent attendance, so they’re losing that valuable payment.

Evans: That doesn’t seem fair does it?

Smith: No it’s not fair, especially when it contributes to the household income, which a lot of low income families rely on. ‘Cos EMA is given primarily to low income families, so again it’s a huge implication on them and it just doesn’t seem fair that if they miss the odd day or the odd class, or they’re late, that entire payment’s gone. It’s an invaluable thing to young carers who are struggling financially. A lot of parents rely on the young person getting that money from going to school or college. So when they’re losing out on that it’s putting more strain on the family themselves and it’s not exactly ideal when they’ve got enough to deal with. So it’s like imperative that young people are still getting that money, I think schools should take into consideration, you know, they’ve got extra needs to the average young person, so it’s an invaluable service really.

Evans: Is this something you’ve addressed with MSPs?

Smith: Yeah, we addressed the clarification of the wording of the guideline documents that the Scottish Government give to local authorities, asked for clarification around the wording of what was required for EMA, and we achieved that, which was objective one of the campaign. So now the MSYPs are being asked to go out and consult with their local councillors and local authorities and asking them to implement these guidelines. So my job, along with the other eleven Edinburgh MSYPs, will be to speak with the City of Edinburgh Council and urge them to support it and implement them.

Evans: Do you have a long term condition yourself?

Smith: Yeah I do, indeed, yeah. I’ve got leukaemia. I have all sorts of things, I’ve got lung problems as well, so it’s just something that I’ve dealt with for the last four or five years.

Evans: So how does that impact on your family?

Smith: I’m fortunate enough that I don’t face financial barriers, which I’m thankful for, but the stress upon my younger siblings, it has a knock on effect on them, you know, having to miss going out to their friends during the week because my mum needs someone to look after me, because she can’t do it, she has to work. That compromise that they have to make is quite hard hitting, but yeah I see that on a daily basis.

Evans: What do you see?

Smith: My sister is fifteen so she should be out living her life, going out with friends, the same as I did. I didn’t have that burden of having to look after older siblings, so I take my hat off to her and every young person that’s a young carer.

Evans: What sort of help and support do you think she needs?

Smith: Just that free time to go out and be a young person really, I mean she does lack that support. I don’t think she identifies herself as a young carer. I do tell her, you know, you are a young carer, you have caring responsibilities, but she just sees herself as, ‘well I’m helping my family’. She sees it as an obligation, yeah…she feels like she needs to do it because I’m her sister. Sometimes I wish she didn’t have to do it, but…

Evans: And that sort of responsibility is very much unseen isn’t it, people just take it, it’s not an obligation to look after your family [no]; it’s something that’s there and perhaps people outside that family don’t realise the help that they need.

Smith: Yeah that’s right, her school don’t know she’s a young carer, a lot of people don’t know she’s a young carer and that’s a problem as well with young carers isn’t it? The ones that we know about are self-identified, but there’s a lot of carers that no one knows about and again that’s an issue in itself.

Evans: Is that something that the Care Fair Share campaign can address?

Smith: I think it’s been brought up a few times, particularly when I met with The City of Edinburgh Council, they brought up the issue of how we could identify young carers. We spoke about trying to do it through matriculation and that type of thing, you know identifying them as soon as they come into the education process, whether it be from primary to secondary or up to college, there should be some sort of process for trying to identify more. And letting young carers know what exactly is a young carer because, again they don’t know because they perhaps don’t have the information to say, well these are the qualities that a young carer has.

Evans: Well that’s the thing isn’t it? I guess, as we’ve talked about, most young carers who go into school just don’t know they’re young carers, so you have to educate them as well.

Smith: Yeah that’s true. I mean there’s 100,000 young carers in Scotland, so that’s ten per cent of the school population and, again, that’s the ones we know about.

Evans: The second Care Fair Share objective was looking to get bursaries for young carers?

Smith: Yeah, particularly young carers in college and universities, who don’t perhaps come under the EMA guidelines, so like loan payments and stuff, so they’re getting a substantial… different amount of bursary. So, again, young carers could qualify as that, they are caring with a responsibility so we’re looking to expand on that towards them and giving them that access.

Evans: Might be a strange question because my young days are well behind me: why would a young carer need money?

Smith: Why would a young carer need money? Well to do numerous things, go from A to B, go to appointments with whoever they’re caring for – I know my sister, she accompanies me to hospital appointments and sometimes I can’t pay her bus fare so she has to pay it herself. But that type of thing you know, going from place to place; supporting the family… again, a lot of young carers I’ve spoke with, particularly in my constituency, their parents rely on the money they’re getting in to support with whether that be the food or different type of things, necessities of life that a lot of young carers rely on the money for.

Evans: When your sister goes with you to hospital appointments, why is she going with you?

Smith: A lot of times I can’t go from places on my own, so I need someone to be with me. So she’s that support network that I feel like, my parents don’t like it but they have to give in and allow it to happen, because there is no one else and we don’t want that support from anyone else, we’d rather it was kept within the family, because it’s easier to maintain that way instead of having to bring in other people.

Evans: But support can just mean company.

Smith: She’s good at keeping me company that’s for sure.

Evans: You’re smiling, why are you smiling?

Smith: Because she is, she’s great at what she does and it does make me smile.

Evans: Are you close?

Smith: Yeah of course, yeah. She’s just always there isn’t she?

Evans: Erin, do you understand what your brothers and sisters have been through?

E McGuigan: To an extent, yeah, but sometimes they don’t always talk about it because it’s easier to just shut it off rather than talk about it. But when you’re in pain yourself it’s hard to see the people around you and the impact that it’s having on them because all you can think about is how dreadful the pain is and sometimes maybe you should make time to look at your brothers and sisters and chat with them and see how it really is affecting them.

Evans: Well family therapists might say that there are two ways that pain in the family impacts on people without pain in the family and one is that it makes them distance themselves from the family, i.e. sends them away from the family and away from the pain; and the other is that it brings them really, really tight in together. Donna, which side do you think you fall on?

D McGuigan: A bit of both to be honest. I’ve distanced myself and I’ve been very close to Erin sometimes. I mean when she was in hospital I was there visiting almost every night and it did have an impact on my life and I felt like I couldn’t do enough, you know ‘cos I couldn’t take the pain away. So, I suppose I did have to distance myself a wee bit, it was too hurtful to be there but not to take the pain away and solve the problem.

L McGuigan: I think one of the important messages I got from Bath was that this is not an illness, she’s not ill. Whereas I think as a parent you tend to wrap them in blankets and get everything for them, do everything for them till they’re better – it’s a natural instinct – until they’re better and they can do it for themselves. It was accepting that this is a change in lifestyle, she wasn’t ill but she had a change in circumstances and we had to learn to cope with it and I had to then take a step back and let her go and let her do things instead of saying, ‘oh, she can’t do that she’s in a wheelchair’. I had to say, ‘she’s in a wheelchair – so what! It’s up to other people to make it possible for her’. [Laughter] I think that’s the big thing.

E McGuigan: You weren’t alone in coping with the condition, you were there as a family and it was how you were going to cope as a family, rather than the person coping on their own. And we had lots of sessions where me and my mum were together and before we wouldn’t talk about it and I would get frustrated at her and she would get frustrated at me, but one of the main things we got from having the right support was that we were able to open to each other and talk about it. And sometimes it could be upsetting, sometimes it wasn’t, but it still always helped us to get it off our chests, how we were feeling and what we thought, rather than just closing in and not talking to each other and discussing it with each other.

Evans: And you followed through the same principles with your brother and sisters?

E McGuigan: Not as much, especially my brother who it probably had the biggest impact on because he was living at home. Rather than draw attention to it, his theory was just trying to take the attention of it and rather than me and him discussing it he always tries to come in and cheer me up and lighten the situation. He doesn’t discuss it very much, I feel as though he just sort of dealt with it on his own, very much so him… he closed in and didn’t really talk to anybody about it and probably struggled himself rather than talking to people.

But sometimes it’s difficult to approach the situation and think how you’re going to bring the topic up and discuss it with your family, because I was the one suffering he didn’t want to draw any attention to himself. You know, everybody was so focused on trying to help me and support me, but maybe he needed more support really.

Evans: He’s too shy to speak to us today.

E McGuigan: Yeah [laugh].

Evans: The third objective of the Care Fair Share campaign by the Scottish Youth Parliament is to do with financial support for travel?

Smith: Yeah, it’s about reducing the cost of travel for young carers. I know that if you’re in doing a substantial amount of voluntary work and your place of volunteering writes a letter to say that you’re volunteering you get reduced travel. So in my eyes, and a lot of the Scottish Parliament’s eyes, young carers are volunteers themselves; you know, every year they save the Scottish Government £1.6 billion annually. I think that’s a huge figure that sticks in my mind all the time, but again they are effectively volunteer, they’re volunteering their time, their service, their love. I understand that it’s for their family, but they’re doing a huge thing for society, so undoubtedly I think they should be given that help towards their travel, like my sister who helps me going from one appointment to another, so reducing that financial burden would be a huge, huge thing for young carers in Scotland.

Evans: Do you think it’s fair that young carers save the Scottish taxpayer £1.6 billion?

Smith: No, I think it’s an injustice. It’s a huge amount of money, that sort of money could be used to help to support them in their roles and giving them better financial practices like the campaign is calling for.

Evans: So who in the Scottish Parliament is listening to you?

Smith: I’ve met with my local MSP, Malcolm Chisholm, he’s a huge supporter of the campaign, he’s signed our Care Fair Share pledge board. I know other MSYPs have met with their local MSPs in the parliament. I know some people have met with their MP as well, met with councillors, a huge number of parliamentary people as well have met with us and are very supportive of the campaign, yeah.

Evans: And you think you are being taken seriously?

Smith: Undoubtedly we are being taken seriously, yeah.

Evans: Now this Care Fair Share campaign lasts a year, what do you hope to have achieved by the end of the year?

Smith: To make lives of young carers in Scotland better, that’s the ultimate goal of the campaign. So whether we achieve one objective or all three I think just bringing the campaign to light, bringing it to people’s attention, it being in the media, is doing that again. But, fundamentally, to make young carers’ lives better.

Evans: So if I’m looking after the public purse in Scotland, what do I need to know that will send me away and write a cheque?

Smith: Send you away and write a cheque? Young carers save the Scottish Government 1.6 billion annually and ultimately young people are compromising being young people by having caring responsibilities, so by lifting the financial burdens on them, then that’s taking away some of the compromise and allowing them to be young people and that’s fundamentally what they should be doing. Yes they can care, but yes they can be young people at the same time. Caring shouldn’t mean compromise and we should be supporting young carers financially throughout their lives.

Evans: Caring shouldn’t mean compromise.

Smith: Yeah that’s right.

Evans: That was Terri Smith, Member of the Scottish Youth Parliament, talking about their Care Fair Share campaign. And you’ll get more details from their website, which is SYP, that’s Scottish Youth Parliament, SYP.org.uk

Now Pain Concern has also launched specific services to support young adult carers, through its forum, where you can connect with your peers, articles in Pain Matters magazine and information leaflets. All contact details are at our website which is painconcern.org.uk

I have to 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 health 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.

Don’t forget that you can still download all editions of Airing Pain, including number ten about the Bath pain management centre programme for young adults, from the website or you can obtain CD copies direct from Pain Concern.

Continuing our support for young adult carers, the next edition of Airing Pain will look at how with the right professional support young adult carers and their families cannot just survive, but thrive, when pain is amongst them.

Donna, you’re Erin’s sister, now you’re the expert in this because you’ve been through it, what advice would you offer to other people?

D McGuigan: Talk and listen to each other and offer compassion when things don’t go right and understanding. But I think the most important thing is to talk to the person who is suffering from chronic pain and try and understand their situation and their needs. One of the conversations we did have when she first became ill was when I told her that she will get through it and I never said it will go away or it will get better, or it will… but I told it will get better, it wouldn’t always be like this and said it and I made that promise to her, because I know her and I know she would have got through it ‘cos I know her character.

Life will never be what it was when she was sixteen, but I think she is gonna be an amazing, amazing woman, based on the experiences that she’s had and how she can apply herself. And her life isn’t always going to be easy but I do think that she is going to make the most of it and she’ll be happy and settled and she’ll just be fantastic and I know that about her and I knew that about her then. At that time nobody could have said what her life was going to end up like, never said she would end up walking again, but deep down I knew she had it in her to pull through and come through to where she is now, and she has.

Evans: Are you a strong family?

D McGuigan: Yeah.

Evans: And do you get on?

D McGuigan: Yeah we do… apart from when we’re arguing over hairdryers and make up and clothes [laughter].

Contributors:

Erin McGuigan
Donna McGuigan, young carer
Lorna McGuigan, Erin’s mother
Terri Smith, MSYP for Edinburgh and Northern Leith.

The experiences of young people whose family is affected by pain and a campaign to help improve their lives

This edition has been funded by the City of Edinburgh Council and NHS Lothian’s Self-directed Support Innovation Fund.

In the first of two programmes putting young carers centre stage, Paul Evans talks to a family about how pain has affected their lives. Erin McGuigan was hospitalised after developing debilitating pain in her limbs and now uses wheelchair and crutches. She explains how her condition has affected her brother and sisters. Her sister, Donna, talks movingly of her feelings of powerlessness, how she has encouraged Erin, and the need to keep listening and understanding.

Terri Smith a Member of the Scottish Youth Parliament (MSYP), explains why and how she is campaigning to improve the situation for young carers. Hours of freely-given care saves the Scottish Government £1.4 billion a year, but often leaves young people struggling to stay in education and financially insecure.

Contributors:

Erin McGuigan
Donna McGuigan, young carer
Lorna McGuigan, Erin’s mother
Terri Smith, MSYP for Edinburgh and Northern Leith.

The impact of pain on the family is “neglected”. Lost childhood, financial burden, emotional turmoil and guilt – these are some of the challenges facing family members who care for people in pain on top of the caring itself. Caring for someone in pain can be especially challenging for young adults, as they find themselves in a difficult situation of having to combine school, social activities and future planning with, what often appears, full time caring responsibilities.

Pain Concern has secured a £12,000 grant from Edinburgh City Council to help us establish the impact of pain on young carers for people living with chronic pain. We want to be able to help young adults aged 16-25 and provide them with better support so that their work gets the well-deserved recognition.

The approval of the grant application – under the auspices of Lothian Health Trust – will enable us to fund more of our highly successful information campaigns and quarterly in-house magazine Pain Matters. It will also contribute towards two more Airing Pain radio programmes and our website.

As part of the project we have established an online forum for young adult carers Pain Concern Carer Community, where they can share their experiences of coping with illness in their social or familiar circles. With the funds from the grant we are able to offer expert support fo r young carers through the forum’s Questions section as well as social media channels where young adult carers can raise any concerns or questions which will then be taken to our expert panel for answers.

Chairperson of Pain Concern Heather Wallace said the grant allocation from Edinburgh City Council was “more than welcome”.

She added:

“Chronic pain not only blights an individual’s life. Indirectly it affects the life of the whole family. This award is a recognition of the efforts of young people caring for an individual enduring chronic pain.

“Sadly there is no cure for chronic pain and all too often the needs of family members are overlooked on how best to deal with the issue. Pain Concern believes the best ways to support carers is to support and improve the quality of their lives.”

The two Airing Pain programmes will be broadcast on 17^th June and 1^st July, with the first programme focusing on the story of the McGuigan family and how chronic pain affects their family life; we also hear Terri Smith a Member of Scottish Youth Parliament explaining how they campaign to improve the situation for young carers.

Are you caring for a parent, brother or sister, or other relative who has chronic pain? If so, you are not alone.

According to 2011 census data from 2011 there were 177,918 young unpaid carers (5 to 17-years-old) in England and Wales. In Scotland, 100,000 young people are estimated to be carers. These young people provide care and support in a variety of ways to help support another family members in their day to day activities.

Pain Concern Carer Community has set up a forum for young people aged 16-25 caring for family or friends with chronic pain. We want to build an online community where people can discuss, share information and keep in touch with each other. We invite young adults to share their experiences of coping with illness in their social or familiar circles and we want to be able to support them and improve the quality of their life. The forum is part of Pain Concern’s Young Adult Carers project which aims to raise better understanding of problems and challenges of young adults providing care for family or friends with chronic pain.

Join the forum here.

The forum incorporates a Questions section where young carers can raise any concerns or questions which will then be taken to our expert panel for answers – questions can be asked to family therapists, psychologists, psychiatrists, physiotherapists and other medical staff; we have representatives from the Lothian Centre for Inclusive Living and you can also ask questions to people who were or currently are young carers themselves.

If you’re not sure about help and financial support available to you, want to enquire about emotional challenges you face in your role of a young carer and how to deal with them, please follow the link ask your questions and get involved in the Pain Concern Carer Community https://healthunlocked.com/painconcern-carer/questions

We also invite young adult carers to message us the questions on Facebook, tweet them on Twitter using hashtag #YoungCarersQA, email them to carercommunity@painconcern.org.uk or share them via comments below. All answers will then be shared on our website and some of them will be incorporated into a leaflet for young adult carers.

Learning to live with it: a toolkit for self-management

This edition has been funded by a grant from the Scottish Government.

‘You have to learn to live with it.’ Pete Moore’s GP told him after running out of treatment options for chronic pain. From his own experiences of learning how to live with pain, Pete Moore developed the Pain Toolkit (first a leaflet and now a multimedia web resource) to help kick-start other people’s efforts in self-management.

Producer Paul Evans caught up with Pete at the British Pain Society’s Manchester meeting for an in-depth introduction to the Pain Toolkit. Rather than relying on an exclusively medical model of endless prescriptions, the Toolkit represents an educational approach giving people strategies for self-management. It’s an approach that goes beyond just treating the pain and looks at mood, sleep, exercise and relationships.

Pete describes how the Pain Toolkit uses images and humour to make self-management messages – gathering a supportive team of healthcare professionals, pacing and relaxation – hit home and the ways in which technology can help get the message out there.

Issues covered in this programme include: Web resource, alternative therapies, pacing, relaxation therapy, educating health professionals, GP, social media, depression, family, relationships, work, pain toolkit, stretching, exercise, gardening and workshops.

Contributors:

Pete Moore, Creator of the Pain Toolkit.

More information:

The Pain Toolkit.

Learning to live with it: a toolkit for self-management

To listen to this programme, please click here.

Prefer a PDF?Download

Paul Evans: Hello, and welcome 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 edition’s been funded by a grant from the Scottish Government.

The British Pain Society defines chronic pain as ‘continuous long term pain of more than twelve weeks, or after the time that healing would have been thought to have occurred in pain after trauma or surgery.’ Almost ten million of us in Britain alone have it. Listeners to these Airing Pain programmes will know that many different healthcare professionals, including doctors nurses, psychologists, physiotherapists and occupational therapists [OTs] all play a part in effective pain management. Whilst this team list is by no means comprehensive there is one notable omission, and that’s the patient. Okay, we may not be health professionals, but we are experts – nobody understands our pain like we do and our role in managing our own pain, self-management, is key to a better life.

So, in this edition of Airing Pain I want to explore that concept of self-management, with an in depth look at what’s widely regarded in professional and patient circles as an essential guide to self-management. It’s the Pain Toolkit. What started some ten years ago as a simple information booklet, with handy tips and skills on self-management, has grown into a multimedia online resource. Its developer and driving force is Pete Moore, who used what he’d learned on pain management programmes, along with other skills picked up along the way to manage his own persistent pain, to share with the rest of us.

In recognition of his continuing work Pain UK, the British Pain Society and the Chronic Pain Policy Coalition named him their pain champion of 2014 at an awards ceremony in the House of Lords. And following that award I caught up with Pete at the British Pain Society’s Annual Scientific Meeting in Manchester.

Pete Moore: You know, once you’ve had pain for a number of months or years you get stuck, you lose your confidence and you just really don’t know what to do with yourself. And sometimes you hear that phrase from the GP, ‘Well you’ll have to learn to live with it.’ But how do you start, it’s like saying to someone, look you’ll need to drive a car, but they don’t really tell you where to go and get the lessons from, you know. So the Pain Toolkit really is just a – for a person with pain – a really simple booklet, 24 pages, just to really kick start… to get them interested in actually self-managing their pain their self. What the healthcare professions tell me they like about it is that it helps them to start that conversation with the patient, to actually get them interested in self-managing.

I think we’ve got to that point now with pain, where it’s always been the poor relation to healthcare, it’s very poorly resourced. And as I’m slowly learning of late, I’ve been asking on Twitter and a few academic organisations, that pain self-management isn’t actually taught when a doctor is learning to become a doctor, or when a physio is learning to be a physio, or an OT becoming an OT.

Evans: The thing is, you used the expression, ‘you’ll have to learn to live with it’, well that can be taken as a put-down statement – ‘Well, just get on with it. Learn to live with it.’ Well, actually, you do have to learn to live with it.

Moore: You have to learn to live with it, but it needs to be a starting point and there needs to be some skills. And that’s when I’m out talking to GPs – I would never be a GP, I think it’s such a tough job – but I think it’s come to a point where they can’t keep writing out prescriptions for medication, they can’t keep signposting people to other services. From my personal opinion and from what I can see from talking to many GPs, is that they need some extra skills built into them when they are learning to become GPs, to have that conversation with patients about becoming self-managers. And I think when healthcare professionals are taught in their medical schools they’re taught around the medical model. Funnily enough, I saw the other night on Twitter, patients need to be educated to self-manage their pain, well the medical model isn’t really education, so perhaps then what the medical people need to realise or think about is actually involve educational models into their learning.

Evans: Well, okay, we’re at the British Pain Society Annual Scientific Meeting, you’re not a health professional, but you’re here talking to people. What can you tell them – all these worthy doctors who’ve come here this week – what can you tell them about managing their patients?

Moore: I think really the main message I always give to them is to have that conversation with the patient, because I think they’re so used to reaching for the treatment options, when really when a person’s got long term pain, persistent pain, they need some strategies to help them with their pain. So it really is about encouraging them to have that conversation with the patient, saying to them, ‘Look, we seem to be a bit stuck here with the pain, but you’ve probably got other concerns going on here.’

So one of the things with a lot of pain healthcare professionals, they’re trained to treat the pain, but when you’ve had pain for a number of months or years you’ve got bigger problems – you can’t sleep, you’ve got family worries, you’ve got work problems you’ve got money worries, probably getting a bit of low mood, what I call ‘a depression’, you know, feeling down. These problems will actually start to supersede the pain itself.

So, really, when the healthcare professional sees the patient they can say, look, you’re in a persistent pain cycle – on page three of the Pain Toolkit – look at the top bit here, this is knowing the problem with your pain, but you’re telling me here that you can’t sleep, you’ve got money worries, you’re not active enough, stuff like that, and you’ve got relationship problems and what not, we can’t really do much about the pain at the moment, but what can we do about sleeping problems, about perhaps relationship problems, about work problems. Let’s have a look at that and see what we can do with that.

Evans: Now you’ve just been showing me your new toy, and it’s a spanking brand new – well it looks well used now actually – a tablet, and this one happens to be made by Apple, so it’s an iPad. And you’ve been showing me your Pain Toolkit on that. Ten years on, this started in 2004, this is how people can access it.

Moore: It’s about moving with the times really, I mean we’ve got the Pain Toolkit booklet which is in a paper form, but when I talk to younger people, when I say ‘how do you learn new information?’ They all say tablet, smartphones, YouTube, the internet. We had to start thinking about producing stuff that people were going to actually want to see.

Evans: Go on, show me [Moore: Okay lets…], persuade me I need to buy one of these…

Moore: Okay, there you go. Would you like to play some of it?

Evans: Go on.

Moore: I tell you what I’ll do – I’ll play the one where it talks about Pain Toolkit. I was working in Europe last year at the EFIC pain conference, and also at the EFIC pain school in Nuremberg, and, all it is, it’s a very simple movie where just sort of snapshots really, of all the things we’ve been doing. People with pain, you know, Paul, we’re visual learners. When you’ve got pain, you know, continual pain, your attention span is quite low. So I think when I’ve been talking to people over the years, and especially for me with my pain, I haven’t got the attention span really to think about sitting there reading things.

Evans: This is the technology that people can really access and find advice and help.

Moore: If you type into a search engine, I mean use Google, for an example, if you tap in the word pain, how many websites will come up? We’re talking about one and a half million. So where do you start? You know, ‘I’ve got this pain problem, what do I do?’ So it’s about looking at trusted sites, so the ones we have on the Pain Toolkit: there’s obviously the Pain Concern one, British Pain Society, we don’t have any websites there that are promoting products or anything like that. So it’s about using trusted sites. For me, as well on Youtube, there’s lots of information there, visual information, that’s why we’ve got a link on the Pain Toolkit, where people can look at short videos about self-managing pain.

And the website, it gets a lot of traffic; we get on average about 27,000 visits a week, something like that, on the website. But it aint just the UK, we get a lot of visitors from overseas, from Australia and New Zealand, and now a lot from Canada and the US.

I always remember Rod Stewart from years ago, he did an album back in the seventies – you might remember it, Paul – it was called, Every picture tells a story, and to me it’s about using pictures, it’s about using illustrations about how people can learn how to self-manage their pain. I mean we know how caveman lived years ago, they didn’t leave a post it note on the side of the cave did they? They painted pictures of how they used to hunt and whatever, and we understand how they did those sorts of things. So, for me, it’s about using a mixture of visual, a bit of text, etc.

When I talk to healthcare professionals, I always say to them, rather than saying to the patient, ‘here’s a leaflet’, ‘here’s a Youtube clip’, actually ask the patient ‘how do you learn?’ – ‘do you learn by reading? Do you learn by watching? Do you learn by practice? Or a mixture of all three?’ And then the GP or the healthcare professional comes up with the resources that the patient will need so that they can move on.

But they’ve got to work with them and have an action plan. So it’s not all down to what the patient is going to be doing or down to what the healthcare professional is going to be doing, it’s about how they work together as a team. Look, the Arsenal, we won last night 3 – 0 against Newcastle at home. Why did they win? ‘Cos they played together as a team. Watch Newcastle, they weren’t playing together as a team. I have to get the Arsenal plug in, don’t I?

I’ll tell you what the other good resource for listeners is, is Twitter, because for me, I started on Twitter just over eighteen months ago, I suppose, a year, eighteen months. You get people on there saying, ‘I’m just off at the station’, and all that – I don’t really follow those sorts of people. But what I do, I follow people who are, I suppose educationalists really. And I’ve learned so much in pain management just by following people on Twitter, like physios and GP types and other people with pain themselves. I’ve learned so much from other people and I really encourage other people to go onto Twitter.

Evans: But you are an expert patient, you do have to be careful about advice you accept from the internet.

Moore: I think you have to make informed decisions about things. If you see something on Twitter and if you’re not sure about it, go and see your GP or your healthcare profession and say, ‘look, I’ve seen this on the internet, what do you think, do you think it’s useful?’

With the Toolkit, a lot of people are saying, well this is okay for adults but what about younger people with pain? I bumped into a really nice clinical psychologist called Jess, and we adapted the Pain Toolkit into a younger version called My Pain Toolkit. Great Ormond Street Hospital, they actually use it now and other paediatric services.

And in the last couple of weeks I bumped into a lady in Australia, from Brisbane, and she promotes asthma self-management, especially for kids for school. I used to have asthma when I was a kid anyway, so I just emailed her a copy of the My Pain Toolkit and I said do you think this could be adapted for young people with asthma? And she said yeah. We sent off a first draft on Monday of a version called ‘My Asthma Toolkit’, to some healthcare bods in Australia and in the UK who work with younger people with asthma, as a draft. So we just sent it off to get an opinion from them really, you know. And then people are saying, well perhaps the toolkit could be adapted for many other health conditions.

Evans: Can we just open up your iPad again and just have a look at your Pain Toolkit?

Moore: Okay then, let’s go to the site.

Evans: The address is paintoolkit.org and you can listen to a podcast, there’s some lovely little cartoons on it, you talked about being a caveman, a twenty-first-century caveman, there are the drawings. And it tells you exactly where to go. It’s fun to read, but it is not patronising.

Moore: This is I think, one of the most looked at links – it’s called the persistent pain cycle. It’s very visual so people can see at the top of the cycle we’ve got persistent pain, which leads on to becoming less active, loss of fitness, you start writing ‘can’t do lists’, sleep problems, stress and anxiety. And when I show this to people, they say this is me, [Evans: Exactly], they can recognise themselves – these are the problems that they have.

Evans: Exactly. And there is no rocket science here – it all makes such common sense. We were talking about starting with pain, getting more and more depressed, well the depression feeds into the pain, the more pain feeds back into the depression [Moore: Yeah, yeah] and it becomes a vicious circle, a spiral that has to be stopped.

Moore: I always say to people, I say, ‘what’s the difference between that cycle and the M25?’ [laughter] And they laugh as well. I say well at least you can get off the M25. When you’re on that pain cycle, you’re trapped. You just go round and round and round. And it’s one of them sites where it’s great for smartphones and tablets.

Evans: So down the left hand side there are tool one, tool two, down to tool twelve [Moore: Yup.] – is this a systematic programme that people could go through?

Moore: It can be systematic, but I don’t want to be that regimental really – I think people have to learn in their own funny little way. But I always say, tool one is acceptance – I’m just going to click on it so it comes up – tool one is acceptance that you have persistent pain and beginning to move on. People say to me, which is the most important tool and I really say it’s tool one, because if you don’t really get that you aint really going to go very far.

Evans: And that’s exactly what some people say: ‘Learn to live with it.’ Well yes, learn to live with it, but it’s not a punishment, [Moore: Oh no.] it’s a way ahead.

Moore: Yeah, yeah, but we’ve got to accept it. This is radio, but when people see me on the website, I haven’t got any hair – I’m a slaphead. Now the thing is, with the best will in the world, I can put a hat on, I can put a wig on, but at the end of the day I’ve got to accept that I’ve got no hair on my head. And the thing is as well, I have to move on from that. So the thing is, that’s for me, when I didn’t accept my pain I was a doctor shopper, I was a therapy shopper, and I was going round looking for someone to fix me. And then I had to realise that there’s only one person that’s going to sort me out and that’s me. So I always say to people, look in the mirror, that’s the person that’s going to help you self-manage your pain really.

But the rest of the tools – really don’t have to be systematic tools – two is about getting involved, start building the support team; tool three is pacing yourself… You know we’re really poor at pacing ourselves, what we do, people with pain, is use pain as a measurement really, our guide. So we’ll do an activity and then when the pain starts or increases, we think ‘oh, I’d better stop now’. Well that’s not pain management, that’s again you’re letting the pain manage you, telling you when to stop and start.

People say, ‘Well, I don’t really get that.’ I say, ‘Well if you had a car, do you wait until you’re completely out of fuel before you look around for a garage?’ And they say, ‘No.’ I say, ‘What do you do?’ And they say, ‘I look for somewhere to refuel.’ Well that’s pacing – what you’re doing, you’re stopping before you think you need to. But what we do is we just carry on, carry on, carry on, until the pain is so bad that we have to stop.

Evans: The really difficult thing about pacing, I find, is not stopping when you’ve done too much, but it’s not starting when you feel well. Not trying to get it all done.

Moore: Yeah, we’re all or nothing people. There’s that old saying in the Toolkit, how do you eat an elephant? One bite at a time.

So we’ve got tool four is prioritise and plan your days; tool five setting goals and action plans; tool six is being patient with yourself – you know, we’re not very patient with ourselves – the old saying ‘god give me patience, and hurry up about it’. We’re never patient people.

Evans: I want it now.

Moore: Exactly. We want to be out of pain now. Learn relaxation, a relaxed muscle feels less pain than a tense one; tool eight is stretching exercises. Do you know what Paul? A lot of people with pain, we fear exercise or stretching. In the old days when we started to get active and everything our pain levels increase, but look at it this way – if you haven’t opened up a door in a number of months, or years in some cases, it’s going to creak. It’s the same thing with our bodies, when we start to stretch and exercise our pain levels can go up. Trust me they go down, they fall off a cliff, they really go down.

What do cats and dogs when they wake up in the morning?

Evans: Stretch.

Moore: Yeah, so when your dog got up and stretched, where did you take him to learn that?

Evans: Back to the time when there were lions and wolves chasing him.

Moore: Exactly, it’s in our blueprint. ‘Cos they learned that if they wasn’t stretched they could be someone’s breakfast. So in other words, what they’re doing is keeping their muscles stretched in case they have to get out of a situation.

Evans: You see the good thing about something like this, is that I know all this. My mum said I was a very intelligent person, other people have said perhaps I’m not as bright as I thought, and perhaps I’m not, because you’re talking to me about stretching and aching like that, now, if you’ve noticed I’ve started stretching and massaging my neck? Now why did it take you to tell me to do that, for me to do it? And this is why something like this, to remind you of all those things, is ideal.

Moore: Do you need to be reminded to brush your nashers?

Evans: No I don’t, because my teeth will fall out or I will have fillings if I don’t.

Moore: You do it because it’s become habitual [Evans: Yeah.] become a routine [Evans: Yup.] and stretching and exercising needs to become a routine. And you don’t think about it or need to remind yourself to stretch, you’ll do it. I got up this morning, I stayed over here in Manchester overnight, and again I didn’t think about ‘oh I’ve got to do something, I’ve got to remind myself to stretch’. I got out of bed, put the kettle on, made myself two mugs of hot lemon, then I started doing my stretching. So I’m preparing my body for action for the day.

Evans: It’s that mental change isn’t it? That learning to live with it, yes, but making it part of your life. Pain is now part of your life.

Moore: You know Paul, it’s like, I call it an unwanted visitor in your life, you know you’re going along in the bus of life and then you pull over at a bus stop and this bully gets onto the bus and starts causing havoc and stuff like that. And you think to yourself… the bully says ‘I’m not getting off this bus.’ Well where do you want to stick this bully on the bus, you know? And everybody says we need to stick him at the back a bit, out of harm’s way, but don’t let him drive the bus you know. So it’s a little bit like that, where something comes into your life and you think to yourself, it’s going to be part of my life, so it’s learning how you live with that.

Tool nine is keeping a diary, tracking your progress. The reason why I put this one in about keeping a diary is a lot of healthcare professions say, do they need to keep a diary, is it reinforcing the pain and all that, but do you know what? I always remember a story years ago about a bloke who was walking up, you know those streets in San Francisco, where they’re really steep? And he’s walking up the hill and he looks up and goes, ‘oh my god, look how far I’ve got to walk’, but then he looks round and then he says how far he’s come. And sometimes, you know, it’s good to look back and reflect on how well you’ve done in your journey, you know.

Evans: No I kept a diary when I was at a particularly low point, but as soon as I started coming out of that I stopped keeping a diary. Maybe I ought to carry on with it.

Moore: No, it’s up to you. I don’t keep a diary anymore, in the early days I used to. Pain management, you know, Paul, is a bridge to normal living. If you’re a diary writer, fantastic, you know it’s about moving on with life, getting on with live, etc.

We’re looking at tool ten now, this is about having a set-back plan. Because we’re overachievers, in other words, we do more than we have to, we’ll probably overdo it and our pain will increase. So it’s like having a spare wheel in a car really, so having a back-up plan, you know, what can I do to get me back on the track.

Evans: And what do you do, what’s your back up plan?

Moore: What I tend to do is I cut down the activities. If I have… funnily enough I went out on my pushbike on Sunday and I think I overdid it a little bit and hit a few bumps and it really disturbed my back , you know. So my set-back plan was when I came back off my ride I could feel myself my lower back’s a bit tight, so what I did I laid down for a little but, done some stretching, put some ice on it. Worked a treat – hunky dory, back on track again! So it’s about getting in fast, do stretch it, cut down activities, don’t do nothing silly, just be mindful of yourself really, just keep an eye on what you’re doing.

So on tool ten… let’s go for tool eleven, what’s tool eleven? Ah, my favourite tool here, ‘cos it’s got a picture of a cartoon of the Arsenal. It comes back to that one about teamwork and action planning. You’ve got to work as a team with your healthcare professionals, this isn’t a one man show. There’s a lady, funnily enough, I’m helping down in Kent at the moment, and she won’t work with her healthcare professional and do you know what? She’s really finding it tough. This aint a one man show, you’ve got to work with your healthcare professional – it’s teamwork.

Evans: But he or she, the healthcare professional, has to work with you as well?

Moore: And that’s their bit, Paul, they’re not really skilled up in it. This is how crazy it is, right, say for example you want to learn to drive and you went and sat beside someone who turned up at your house who can’t drive, knew a little bit about driving, but wasn’t a qualified instructor. Would you want to take lessons from them? No, so teamwork is essential, you’ve got to work as a team, not only with your healthcare professional, but also your work colleagues and also your friends, friends and family.

And then we come up to tool twelve, which is about putting them all into action really, keeping it up, persevering. One of the things as well a lot of people think with pain self-management, it’s dull and boring. Well it’s only dull and boring cos you make it that way. It’s about doing fun things, you know, self-management can be learning a sport, and I’m not talking about high impact sports. And in fact on Twitter just before Christmas I came across this gardening group over in South London where they use gardening as a form of exercise, stretching exercising. So they’ve all got their own little allotments but they all meet up and do some stretching and not all older people but they do younger people as well. They’ll do the stretching, but they do a little bit then take a break, do a little bit, take a break. Over in Penge in Crystal Palace, if you look them up on Twitter I think they’ve got their own little website. But they do gardening, but they talk about the importance of stretching and exercising as well. There’s walking groups now…

I remember a healthcare professional telling me that one of the things that’s come out of research is how pain can isolate people, where you become, gone from that ‘can do’ person to the ‘can’t do’ person and you end up becoming a bit of a recluse. When you’ve tried to do something your pain is increased so you think, ‘well I can’t do that again’. And you stop doing social events, etc.

There’s a girl down in Essex, she was terrified sometimes. She’s gotta do this wedding but when I talked it through with her she was worried about the bed that was going to be at the hotel. I said, ‘well, first off, what about phoning up the hotel and make sure that you’ve got a firm bed that you want?’ And she said, ‘would they do that?’ And I said, ‘You’re their guest. Their job is to make you have a good customer experience. And the other thing as well, rather than go down there on the day, is to actually go down the day before. So you go down there, stop over – so you’ve rested – then you do your mate’s wedding, stay over again, then come back the following day.’ That’s a great action plan.

Evans: It is, and that isolation, again, is going back to that circle of pain we had [Moore: Yeah], everything feeding into each other. [Moore: Yeah, yeah] But there are ways round it as you’ve said – have an action plan.

Moore: Listen Paul, we all get problems in life mate, but when you’ve got pain, what… the everyday problem becomes magnified. So it’s about using problem solving skills. That’s one of the things we do with the Pain Toolkit workshops, the ones we run for patient groups and healthcare professionals, just providing a problem solving formula really. It’s like a recipe I call it, you know, how to get over problems, you know.

And I think really just keep asking other people – you know, one of the best pieces of advice, or suggestions that was given to me years ago when I first started out in pain management, they said, ‘Pete, take the cotton wool out your earholes and shove it in your mouth.’ What they meant by that was I’ve got to stop talking and start listening. And when I’ve started to listen I’ve started to learn, but when you’re talking you’re not learning.

Evans: We’ve talked about health professionals maybe not having the skills, maybe the will, to listen, but in all fairness we are at the British Pain Society Annual Scientific Meeting, you’re talking with health professionals here and more than that you are welcomed here by them. And you’re the 2014 Pain Champion, so they obviously do value what the patient has to say.

Moore: Well when I got the phone call last November to say that I’d been nominated to this I couldn’t believe it. I’ve never really looked round for any recognition or accolades – I’m not that sort of guy. ‘Cos I still do what I do really, I’ve been where lots of people are and all I really want to do is help people start that journey back really, you know? But, I went up to the House of Lords a few weeks ago I think and accepted the award by Linda Riorden, she’s an MP, she’s passionate about pain management. But the work goes on, I try to use the title that I’ve got to try and promote, I’ve got this petition actually, an e-petition on one of the government websites to get more pain self-management in the community, get it out the hospitals, get into the community but also have good pain self-management information on the internet.

Evans: And paintoolkit.org is a good way of doing that.

Moore: It’s a start there, but there’s also loads of them – there’s the Pain Concern website, where you can subscribe now to the magazine online. I mean, how fantastic is that? Paul you and I know you’ve got to sit on a train and everybody’s looking at their phone, they don’t even bother looking out the window anymore.

How about this? Lady who lived next door to me, Lisa, she’s an elderly lady with Parkinsons and she saw that I had an iPad – I bought this last year – and she said, ‘That looks really nice.’ Anyway, she went and got one. She’s 72 years old and she loves it, keeps her mind active. She’s Danish by birth and I showed her how to look at Google Earth, she was showing me whereabouts she was brought up in Denmark, etc. But she uses it now to keep in contact now with her family.

Then I bumped into a couple of elderly ladies down by the river where I live, and she said, ‘Oh we’ve got laptops we couldn’t do without them.’ And I said, ‘You don’t mind me asking you, young ladies, but how old are you?’ She said, ‘We’re in our eighties.’ And I said, ‘What do you like about using the tablets and the laptops?’ She said, ‘We can buy things, it keeps us social, we feel like we’re in touch with the world.’

Evans: Pete Moore, driving force of the Pain Toolkit. He was good enough to mention Pain Matters, the companion magazine to these Airing Pain programmes. It’s available as an online subscription or in paper format.

Don’t forget that you can still download all the editions of Airing Pain from 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, including Pete Moore who offers advice and support in his ‘Ask Pete’ column in Pain Matters magazine, then please do so via our blog, messageboard, email, facebook or Twitter, all the contact details are at our website. Once again it’s painconcern.org.uk.

I offer these words of caution in every edition of Airing Pain that whilst we believe 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.

Well the delegates of the British Pain Society Annual Scientific Meeting are coming back to be refuelled [laughter] after their talk. Ten years ago the Pain Toolkit was pen and paper, 2014 it’s on the internet, 2024…

Moore: [Laughs] We’re brown bread by then. I tell you our next project, is we’re adapting our site for other organisations – we’re going to be doing one for Manchester soon so it’ll be paintoolkit.org/Manchester. But also we’re building three apps. We’re building the beginners app, for the Pain Toolkit, then one for if people want to progress people can track their progress using something called My Pain Toolkit, and there’ll be another one there which is a CBT (Cognitive Behavioural Therapy) led one, where they can learn more information there about pain management.

Evans: Thank you very much.

Moore: Thanks for the interview Paul, it was great.

Contributors:

Pete Moore, Creator of the Pain Toolkit.

More information:

The Pain Toolkit.

Did you know it’s Volunteers’ Week this week? If you have thought of volunteering, but were unsure how you could help, this is a great time to find out more.

Volunteering has lots of benefits – from teaching you new skills (which could help get a job) to widening your social network (many people make new friends through volunteering). At the very least you could feel good about working for a cause which means something to you.

People can be put off by the time commitment needed to volunteer, however at Pain Concern we are looking for people who are willing to talk to journalists about their own experiences of living with chronic pain, or being a carer for someone who does. This could be for newspapers, radio or television – whichever you are comfortable with. The time commitment can be as little as 10 minutes on the phone to going into a studio to record an interview for radio or television. Whatever you do, we’ll make sure you’re looked after and given a briefing beforehand and help with preparing some answers.

We are hoping to build a database of case studies where the volunteers will be happy to speak to press, TV or radio outlets to share their experiences of living with chronic pain. This is exactly what media want –individual stories and a personal touch to bring to life to audiences what can sometimes be a dull report of a health condition.

One of our media volunteers, Erin, has been already talking to media to promote better understanding of chronic pain and her condition of Complex Regional Pain Syndrome. Erin was interviewed by Daily Mail at the end of April after publication of a chronic pain services report; her personal experience of how the pain affects her daily activities, and how she finds healthcare services in Scotland, was ideal material to wrap a story about the government report. By speaking to media Erin put a human face to the report which those with chronic pain could relate to, and those not living with chronic pain could understand a little better.

We rely on people like Erin to help us get the message across to a wider audience, who, without media coverage, many times would not be able to appreciate the condition that affects one in five people.

If you, or someone you know, have chronic pain and would like to share their experiences of living with pain with the Media, please get in touch with us 0131 669 5951 or email: hr@painconcern.org.uk. Please visit our Volunteer page to find more about volunteering for us.

Happy Volunteers’ Week!

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vuid	2 years	This domain of this cookie is owned by Vimeo. This cookie is used by vimeo to collect tracking information. It sets a unique ID to embed videos to the website.

Cookie	Duration	Description
IDE	1 year 24 days	Used by Google DoubleClick and stores information about how the user uses the website and any other advertisement before visiting the website. This is used to present users with ads that are relevant to them according to the user profile.
NID	6 months	This cookie is used to a profile based on user's interest and display personalized ads to the users.
test_cookie	15 minutes	This cookie is set by doubleclick.net. The purpose of the cookie is to determine if the user's browser supports cookies.
VISITOR_INFO1_LIVE	5 months 27 days	This cookie is set by Youtube. Used to track the information of the embedded YouTube videos on a website.

Cookie	Duration	Description
_gat_gtag_UA_32255482_2	1 minute	No description
CONSENT	16 years 8 months 9 days 15 hours 12 minutes	No description
huBv		No description

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