Pain Concern

How pain affects family members and how family therapy can help

This programme was funded by a grant from the Big Lottery Fund, Awards for All (Scotland).

Pain can sometimes seem like an ‘uninvited guest’ or ‘intruder’ into family life. In this programme we look at the strain pain places on all personal relationships and how family therapy can help. Clinical psychologist Dr Elaine McWilliams talks about the impact of pain on the sexual and intimate side of a relationship, and she and family therapist Jan Parker also explain the effects of pain on the parent-child relationship. Psychiatrist Dr John Rolland explains how a ‘resilience approach’ can help families to move forward together.

Issues covered in this programme include: Family therapy, relationships, sex, intimacy, cancer, young people and children, parents, communicating pain, communicating feelings, mental health and anxiety.

Contributors:

Dr John Rolland, Clinical Professor of Psychiatry, University of Chicago and Co-Director, Chicago Centre for Family Health
Jan Parker, Association for Family Therapy
Dr Elaine McWilliams, Consultant Clinical Psychologist.

How to improve pain management for older people, and living with lower back pain

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Pain has often been seen as an inevitable part of getting older. Airing Pain listened in to a panel of experts at a ‘Growing Old with Pain: Innovation, Creativity and Development’ conference in Edinburgh to hear how pain treatments can dramatically improve the quality of life of older patients. The importance of family and carers taking an active role in the management of elderly patient’s pain is highlighted, along with the importance of raising awareness of the best treatments for pain in older people among health professionals. We also hear the inspirational story of Michael and Rosemary Morrison who together have rebuilt their lives around their chronic back pain and the benefits of using computers and computer games to access information and exercise.

Issues covered in this programme include: Elderly people, lower back pain, family, carers, computer games, Nintendo Wii, arthritis, depression, isolation, osteoarthritis, osteoporosis, care home, educating health professionals, misdiagnosis, exercise and fibromyalgia.

Paul Evans: Hello and welcome to Airing Pain. A programme brought to you by Pain Concern, a UK charity that provides information and support for those of us living with pain. Pain Concern was awarded first prize in the 2009 NAPP Awards in Chronic Pain and with additional funding from Big Lottery awards funds for all programme and the Voluntary Action Fund Community Chest, this has enabled us to make these programmes.

Prof. Dennis Martin: Pain in older adults has been an unrecognised problem and we know that the number of people who have pain gets greater the older the age group you get. But it seems to get less in the very old age groups, and we’re not sure whether that is due to people not reporting it because they think pain is a normal part of life and therefore just take it for granted.

Dr Beverly Collett: We’ve got an aging population, so we’re all getting older – by 2020 we anticipate huge numbers of older people. And also, in that group, it’s been suggested that often pain is not recognised and, in the worst case scenario neglected, because I think people assume, ‘It’s part of getting older so I have to live with it’.

Martin: And that’s the kind of question we’re wanting to answer because there’s no reason why pain should be a normal part of life. It is at least as important, if not more important, in older adults where the effects are potentially more significant.

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Evans: Earlier this year, the Royal Pharmaceutical Society in Edinburgh and KT EQUAL – that’s a group of UK researchers dedicated to extending quality life for older and disabled people – hosted an event focusing on ‘Growing Older with Pain through Innovation, Creativity and Development’. I’m Paul Evans and in this edition of Airing Pain, I’ll be giving you a flavour of some of the issues raised.

Now, the focus of the evening was a question-and-answer session with a distinguished panel of experts. They were: Dr Beverly Collett who is the Head of Chronic Pain Coalition and Consultant in Pain Management at Nuffield Health Leicester Hospital; Prof. Dennis Martin, Director of the Centre for Rehabilitation Sciences at Teesside University; Prof. Peter Passmore, Professor of Aging and Geriatric Medicine at Queen’s University Belfast; Dr Pat Schofield, Director of the Centre for Advanced Studies in Nursing and Centre of Academic Primary Care at the University of Aberdeen; and, finally, there was Dr Kevin Voles, who’s a consultant clinical psychologist at Keele University. The event was chaired by the journalist, campaigner and former MSP Dorothy-Grace Elder:

Dorothy-Grace Elder: Katie Green of Arthritis Care in Scotland – her question, she says: ‘In a recent survey by Arthritis Care, more than half – 52 per cent – of the respondents aged over 65 stated that they’d often or occasionally experienced depression as a result of their arthritis pain. Is the panel aware of other evidence about the psychological impact of pain and how pain management interventions can address this?’

Dr Kevin Voles: We all know depression is very prevalent when quality of life starts to get lower. The good treatments that are out there, the effective treatments that are out there, offer a combined approach that get people back on track. I think that’s just as applicable to older adults who also tend to be more depressed for other reasons – of course there’s a lot of depression and it’s very treatable.

Elder: Dennis, do you want to comment?

Martin: Yeah, I think you can even expand on the context of the question: it’s not just psychological, it’s psychosocial as well. Social isolation is a very big thing for older people with chronic pain and that’s something that can be addressed…

Elder: …in pain management.

Martin: All-around, yes.

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Schofield: Common causes of pain in the older population are things like osteoarthritis and osteoporosis and then the associated problems such as falls, injuries and so on and then they’re left with ongoing problems, like chronic pain.

Evans: That’s panel member Pat Schofield speaking prior to this event. She’s Director for the Centers for Advanced Studies in Nursing and of Academic Primary Care at Aberdeen University. Now, her field of expertise is particularly relevant to the next question:

Elder: Jeanette Barrie from ex-Quality Improvement Scotland, who’s done some marvellous reports and helped compile these and push them forward:

Jeanette Barrie: My concern really is for patients or residents of care homes. I think Peter mentioned that 50 per cent of care home residents report pain. In some of the papers I’ve read it says that it’s 85 per cent [others gasp]. A quick trawl of our own care homes reported that not many [people had] actually been assessed routinely, except in the Liverpool Care Pathway stage, in the last few days of life, which is extremely sad.

Schofield: A lot of the pain assessment tools that we use for measure pain in the general population are not necessarily appropriate for the older population, because they have difficulty in understanding the questions that we’re asking. And then you add in things like confusion and so on, which makes it a little bit more complex. The first priority really is to actually talk to the family who live with that particular person, because they can observe any changes in behaviour that could be attributed to pain.

Similarly, I think, if you’re talking about nursing home populations, the staff who work in those settings know the residents very well and also know if there are any changes in behaviour.

Pain assessment is not widely used in care home settings, it’s not seen as one of their major priorities, I think. They have so many other things to deal with. And I think what we really need to do is to get those guidelines readily accepted in all care settings including nursing homes – they can help.

Elder: Onto the next question. From Ron Marsh, user member EOPIC, University of Aberdeen. What’s EOPIC, again?

Ron Marsh: EOPIC is ‘Epic’. EOPIC stands for engaging people in self-management of chronic pain. Because I’m in it – I’m older, so they had to have an ‘O’… [laughs all around]

Evans: Before we go on to Ron’s question, let’s find out a little bit more about EOPIC from Blair Smith. He’s a GP and Professor of Primary Care Medicine at the University of Aberdeen.

Blair Smith: EOPIC is a study funded through the Lifelong Health and Wellbeing Initiative by the research councils, mainly the Medical Research Council. Its aim is to identify and begin to test self-management strategies for chronic pain experienced by older adults.

I think the important point about chronic pain, just like many other health questions, that a lot of research is being done not specifically in older adults, and in fact a lot of research actually excludes older adults and people with other illnesses. One of the important things is if you’re looking at drug trials, for example, almost every drug trial has excluded older adults. And yet, many conditions… and most of the patients that come in to me at the surgery are older adults and therefore the evidence to support their treatment is not great.

Now that’s just true when we look at the experience of chronic pain. Before we can identify and evaluate self-management strategies, we need to understand what the experience of chronic pain is and how people are managing it themselves already. We know a little bit about that in younger adults, but the research on older adults has not been done thoroughly, so we’re looking at that just now.

We have a very active, enthusiastic and valuable group of service users, older adults who have experienced chronic pain themselves. Historically at Aberdeen, with my colleague Pat Scofield we’ve worked with older adults for a considerable time and we have a very active users group who’ve helped us to shape the research, to tell us what the research questions are and to help us identify what approaches to answering these questions might and might not be feasible. So then when we came to design this particular study, we had a smaller group of those inputted in to designing the protocol right from the beginning [who] continue to serve on the research team with regular meetings, input and reviews of materials. And we couldn’t do without them.

Marsh: Hi, I’m Ron Marsh. I’m a patient that has pain through diabetes and lower back pain. We have a very wide remit: we can comment on any aspect of the study and we’re welcomed in doing that. You know, it’s not a case of ‘them and us’ at all; we’re just a group of laypeople and medical researchers, medical people…

Evans: Can you give me and example of how you’ve helped, or what input you’ve had into their work?

Marsh: I think we’ve been able to give direct evidence of what it is like for an older person living with pain.

Evans: Explain to me, as somebody who feels he’s very old – mid-fifties [laughs]– what I can look forward to as a person in pain, when I’m getting a little bit older.

Marsh: I have taken the view that pain is just something that comes with old age. Listening to discussions like this tonight, I shouldn’t really be expecting pain…

Evans: You shouldn’t lie down and just accept it.

Marsh: Correct.

Elder: Now, your question is: when will old age without pain arrive?

Prof. Passmore: If I may comment – I think it goes back to this sort of acceptance of pain as part of something that is just going to happen to you and I don’t for a minute believe that! I suppose where I work from is: it depends on how far you go in terms of the root cause. So I will chase that.

The worry for me is that if people don’t deal with the acute pain, the acute pain then becomes chronic, which just becomes an entity in itself. So at that stage it’s not relevant what the root cause was, you’re just in chronic pain with the physiology and the way it develops. So in that situation I think you’re into psychology, explaining about the situation and what we can do in terms of alleviation. My comment to people who are in that situation ‘Look, I might not get rid of all of this for you, but [I could] make it bearable’, you know?

But to go back to your question – I think the question for people who are in pain is a simple ‘Why?’. [And while] we do have a lot of investigational techniques, I think the question for us is ‘When is it appropriate and when is it not appropriate?’ – that is, you’re into a cost effectiveness argument. And you’re also putting the patient through a lot with some of these tests. So that would be the comment I would make.

Martin: Ron, I think a direct answer to your question, when will there be a cure for pain – I wouldn’t put any money on it for the near future [laughs], but I think what Kevin talked about that is as important is the effects of pain. I think in terms of older people, there’s certainly more research coming out now [that is] focused directly on that: the research that we’re doing with EOPIC, the Smart project that Chris is involved in, is focused on older people – so in X number of years in the near future there should be more knowledge coming out.

Closer to this time I think perhaps what’s needed is better education of health professionals, so we’re getting a more intelligent and thoughtful application of what we already know for younger groups in order to apply that to older people. There is some good existing knowledge which I think could be applied with some effort and thought.

Speaker 1: Can I just add a point there? I think that the whole real fact that new students get taught twice as much pain in terms of their training at veterinary school than medical students do – I don’t know how accurately that applies now.

The second point would be: my experience as a lead in the acute management team in the trust where I work is that junior staff and middle staff don’t know anything about pain management. One of the problems is that we set ourselves up in acute pain teams, in critical care liaison teams and other specialist groups. Partly through their lack of training, their lack of time on the wards, they don’t know how to do basic care. And somehow a return to managing that or giving them a bit more responsibility, but I’m not entirely sure how you would do that because they just don’t have the skills. I think we really need to reflect on how we’re going to get junior doctors to be better trained, so they can do basic stuff.

Prof. Peter Passmore: I couldn’t agree – that’s interesting, because I did mention this. For such a chronic problem, there’s certain things that are never taught in medical school, like management of constipation or of vascular or varicose ulcers. But even over and above that is pain.

We have the fourth years and we send them out and our simple way of doing this is: they survey a group of drugs, but we always make sure the analgesics are on there, so that people who get the constipation ones won’t feel like they’ve drawn the short straw. We’ve tried to indicate that there are problems and difficulties with the drugs that are used.

But I don’t know. I think one ought to be able to impact on the GMC – when you think about the prevalence, etc., and we’ve heard about this – to really look in depth at the undergraduate curriculum and you’ll see that some things, I guess, are being overlooked.

If you look at what’s prescribed in the wards, and we’re published extensively on this, 68 per cent of our drugs in the hospital are analgesics in the geriatric wards. That’s more than even in the nursing homes. But if that is the case, how can you not train people about that?

Evans: Professor Peter Passmore. He’s Professor of Aging and Geriatric Medicine at Queen’s University Belfast.

Now, before we continue, please bear in mind that while we believe the information and opinions on Airing Pain are accurate based on the best judgements available, you should always consult your health professional on any matter related to your health and well-being. He or she is the only one who knows your and your circumstances, and therefore the appropriate action to take on your behalf.

You’re listening to Airing Pain with me Paul Evans, and we’re at KT EQUAL ‘Growing Old with Pain: Innovation, Creativity and Development’ event at the Royal Pharmaceutical Society in Edinburgh.

Michael Morrison: My name’s Michael Morrison, this is my wife Rosemary. We are involved heavily with the Pain Association in Scotland, with the support group up in the Grampian region.

I hurt my back originally playing cricket and for ten years I was diagnosed wrongly. I was being treated for sacroiliac problems but what had happened was, I had three bust discs in the base of my spine. So during those 10 years from ‘81 to ‘91 I was just on painkillers. I always felt that another week will go by and then I’ll be okay, but then in 1991 I became immobile. I just couldn’t walk; I couldn’t put one foot on the floor.

I was in a wheelchair for 12 years and two and a half years ago a friend of my son who’s a surgeon at Woodend Hospital – my son said to him ‘My dad’s coming to see you. Do a good job!’ [laughs] So he called me in and I explained all that had gone wrong, so he said ‘Another operation might sort things out for you’. So I eventually got a call, I went to the hospital, had the operation, had all the discs in the lower spine fused and all the scarring tissue that had been in there cut away and dispensed with.

And when I came through from the recovery room, I was in awe because I had no leg pain, no foot pain, nothing. I thought well, maybe it’s just the effect of the anaesthetic. But no, it’s lasted, and now I’m out of my wheelchair, I don’t use the wheelchair anymore.

Evans: Tell me how important Rosemary was.

M. Morrison: A lot! I don’t know what else I would have done without her! She’s been a rock, as far as I was concerned, because she wouldn’t let me get so low. She used to pull me up by the throat and say ‘Right, you’re not getting into that situation!’ She was the one that pushed me and pushed me… because I would have probably fallen at the first hurdle and said ‘Oh, well, that’s my lot. End of story.’

R. Morrison: I wouldn’t let you!

M. Morrison: She wouldn’t have let me, no. So she was very, very supportive.

R. Morrison: Well, we’ve been married 40 years this year, and… you know, he was very, very bad. He couldn’t walk, I was lifting him [laughs] and how I did it I don’t know! But you do it; you find the strength, you know? I just said to him ‘You are NOT going into depression with this! You may think your life’s over, but it’s not. Mine certainly isn’t!’

I was probably being rotten to him, but it was the only way I could get through to him, because he was going into himself…

M. Morrison: Once I’d been through all the previous departments at the hospital, the surgeon the third time said to me there was absolutely nothing else he could suggest, apart from going into a residential pain management program. So I was one of the ones who was sent from Scotland to Manchester for three weeks. While I was there I got really good advice and it was at that time I felt something needed to be put back into the community. That was when our connection with Pain Association Scotland started.

Evans: So tell me about Pain Association Scotland. What do you do there?

M. Morrison: We have two meetings every month: the first and third Wednesday of every month. During our meetings we normally have a session of light exercise, progressive. We also a session on pain management techniques that people can use for handling their pain – not curing it or whatever, but actually being able to manage their pain and do the things they want to do, without having the stigma for days after. And then we finish off with a session of relaxation. I think that’s the best part! [chuckles] I think that’s what everybody comes for.

R. Morrison: I think when we’re doing the exercise, which is very light, they all go ‘Ohhh!’, they groan, but they do it! It’s good to see them! I mean they know that we can’t cure them, because we tell them that right from the start, but we’ve got a good group.

M. Morrison: They all support each other.

R. Morrison: Yes, yes they do. It’s amazing.

Evans: But you, Rosemary, must be a very valuable part of the group, because you’re not living with pain but you’ve pulled somebody who was living with pain through it.

R. Morrison: Yes, I think because of the way Michael had been, and because I became stronger… I mean, Michael always looked after me – and still does – but at that time, he needed me. So it was my turn to help him.

Some of the group sometimes like to speak to me and sometimes they like to speak to Michael, it just depends. Also, some of them will phone us. We say to them ‘You can phone us at home, if you’re having a rough time phone us!’

Evans: When you went down to Manchester, to the pain management clinic, how far did you have to travel?

M. Morrison: Maybe about 400 miles each way.

Evans: Well, [ironic] that’s easy if you’re in pain!

M. Morrison: [chuckles] No. I was in a wheelchair and I was really struggling.

R. Morrison: I wasn’t allowed to go down, you see, he had to go down himself.

M. Morrison: I was flown in. The health board paid for the whole session, so I was flown into Manchester and there I was picked up at the airport. Rosemary didn’t want to let me go on the plane from Aberdeen.

R. Morrison: But before they would take you on they were saying you had to walk for…

M. Morrison: …Aye, for 200 yards.

R. Morrison: For 200 yards. And they said ‘If you can do that then we’ll take you on’.

M. Morrison: Yeah, I wasn’t accepted initially, because my health was so poor. So they gave me certain criteria and they said ‘If you meet that we’ll put you on the program’. And I battled, I really battled to get me in the situation to go down for that course.

R. Morrison: And he was there for three weeks and it was very, very basic. Oh!

M. Morrison: Yeah, you had to do everything for yourself. You had to make the bed, prepare your breakfast, your lunch, your dinner – all within the confines of a hospital ward at Salford. But the way the program went about it, they could get a video of how you dealt with seven aspects within a house situation; then, at the end of the course, they also video-d the same thing again. And for me the difference was enormous! I didn’t think I was as bad as I was, when I saw the first video, but the second video was just… Chalk and cheese. There was really such a difference!

Evans: Has the benefit stayed with you?

R. Morrison: Yes.

M. Morrison: Absolutely.

Evans: Why did you have to do an 800-mile round trip?

M. Morrison: There’s nothing else in Scotland. I had two options, one was to Manchester and the other one was down to London. Mind you, I’d said no to start with!

R. Morrison: Yes. You did.

M. Morrison: I wasn’t prepared to go and put myself through that. But she kept at me, she said ‘Don’t give up! You try it! It will maybe do you good’. And it did! [laughs]

Evans: Michael and Rosemary Morrison.

You’re listening to Airing Pain with me, Paul Evans. And we’re eavesdropping at the Royal Pharmaceutical Society in Edinburgh where Dorothy-Grace Elder’s chairing the KT EQUAL question time event on ‘Growing Older with Pain: Innovation, Creativity and Development’:

Elder: A lot of elderly people are told by their doctors that pain is an inevitable part of aging – something you just have to put up with. What does the panel think? Is it inevitable?

You know what, if you’ve led a perfect life – never smoked, never drank – you’re dying of boredom, but nevertheless… [audience laughs] What if you should be in very good condition, but you’re very old? Well, is it inevitable that you should suffer pain?

Martin: I think that disability and the suffering associated with it is not inevitable. It’s manageable. The suffering and the disability associated with it, it’s not inevitable, things can be done.

Passmore: I think prevalence has been converted into inevitability. When you think about it, everybody complains about [pain]. That’s a prevalence statistic; it is a real thing. So I think people now are translating prevalence into inevitability and that’s not right.

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M. Morrison: I think certainly as time goes on – you asked the question of what can you expect in older age from pain – I think you’ll find challenges; you’ll probably be challenged to the full. Because between pain in a younger person and pain in an older person, the pain is almost exactly the same; it’s how you handle it that is completely different. And I think that’s really the way to look at it: you’re certainly going to have the challenges, but hopefully through the group that we are involved with we’d be able to provide you with the tools to meet that challenge.

Evans: Can you just give me a checklist of the tools that you can offer?

M. Morrison: The tools that we’re looking at are: taking a Pain Association program through the likes of exercise initially; then some pain management; then relaxation. What we’d be looking at is using IT to the best, and having people involved right from when they join Pain Association Scotland, for example, for £5 a year or whatever. For that membership you’ll be able to log onto the website, then you’ll have a number of medical questions asked – very basic medical questions – to calculate what you would be capable of.

We also talked about using the Wii; but the Wii program type benefits from using IT. And I think hopefully over the next two, three years – these things are expanding so rapidly that we’ll see those [developments] I would say probably in the next five years.

Evans: OK. I’m quite excited about this because you obviously know about the Nintendo Wii – and I think Sony have brought out something like that as well now. I bought my wife a Wii for Christmas. I suffer from fibromyalgia. I have avoided it but obviously you, with pain, and people in your group have found a way of using it.

M. Morrison: Even the fibromyalgia sufferers in our group have found benefits from using the Wii. Before they came to the group, they were stressed every day and a lot of them were very angry over what was happening, because the doctors in the hospital were unable to diagnose or give them any hope for the future. But now… grandchildren are a great thing as well – you learn to like having grandchildren who are very involved with computers and IT and these little fiddly phone things. And I think that’s a beam of light as far as getting older is concerned: having grandchildren who would be able to teach you… And I think as time goes on it will be faster and faster, and everybody hopefully will do it.

Speaker 2: Back to the exercising side of things: in many instances the Far East are way ahead of us. They have their elderly coming up to retiral. Over a period of time, they will actually get them into doing T’ai Chi or whatever, It may be something that we will have to take on board in this country as well.

Passmore: Oh, in Hyde Park there’s a new area converted for older people’s exercise now. Isn’t that right? Dedicated to it? So I think you’re right, it’s something to take on board. But seeing the people cavorting around lampposts in Hong Kong – it’s a great thing! It’s all about the core and all, absolutely. And that in itself will have an effect on pain.

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Evans: And that was Professor Peter Passmore who’s a panellist at the KT Equal event on ‘Growing Older with Pain: Innovation, Creativity and Development’ at the Royal Pharmaceutical Society in Edinburgh. And he sadly brings to an end not just this edition of Airing Pain, but the series. The programs were produced by me, Paul Evans, for Pain Concern: the UK charity providing information and support for people who live with pain.

Now, once the program takes the summer break, please do keep in touch with us. You’ll find all our details at our website at painconcern.org.uk and there you’ll find a wealth of information about managing your pain, how to contact us about information on our sister magazine Pain Matters, and how to download or order all our old editions of Airing Pain. We’ll be back in the autumn to look at the issues affecting 7 million of us in the UK living with chronic pain, but until then I’ll leave you with a thought for the future from Michael Morrison:

M. Morrison: Old age, they say, doesn’t come alone. But it comes with a Wii, a wife, so many grandchildren etc. [laughter all around] that you can use to your benefit in later life.

Contributors:

Michael and Rosemary Morrison, Pain Association Scotland
Ron Marsh, Patient
Dorothy-Grace Elder, ex MSP, campaigner
Jeanette Barrie from ex-Quality Improvement Scotland
Dr Beverly Collett
Professor Dennis Martin, Director of Centre for Rehabilitation Sciences, Teesside University
Professor Peter Passmore, Queens University Belfast
Dr Pat Schofield, Director of Study for Advanced Nursing, Centre of Academic Primary Care
Dr Kevin Voles, Consultant Clinical Psychologist.

How to improve pain management for older people, and living with lower back pain

Pain has often been seen as an inevitable part of getting older. Airing Pain listened in to a panel of experts at a ‘Growing Old with Pain: Innovation, Creativity and Development’ conference in Edinburgh to hear how pain treatments can dramatically improve the quality of life of older patients. The importance of family and carers taking an active role in the management of elderly patient’s pain is highlighted, along with the importance of raising awareness of the best treatments for pain in older people among health professionals. We also hear the inspirational story of Michael and Rosemary Morrison who together have rebuilt their lives around their chronic back pain and the benefits of using computers and computer games to access information and exercise.

Contributors:

Michael and Rosemary Morrison, Pain Association Scotland
Ron Marsh, Patient
Dorothy-Grace Elder, ex-MSP, campaigner
Dr Beverly Collett
Professor Dennis Martin, Director of Centre for Rehabilitation Sciences, Teesside University
Professor Peter Passmore, Queens University Belfast
Dr Pat Schofield, Director of Study for Advanced Nursing, Centre of Academic Primary Care
Dr Kevin Voles, Consultant Clinical Psychologist.

The healthcare professionals transforming pain management, and we take a closer look at how pain is produced by the brain

To listen to this programme, please click here.

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Airing Pain was at the launch of the British Pain Society’s Primary and Community Care Special Interest Group where we heard from healthcare professionals who are working to improve the management of pain conditions in the UK. The crucial role of GPs in recognising and treating pain was especially emphasised.

Plus, is pain all in the mind? Paul Evans learns about the science behind pain in the brain and the exciting studies being done by Prof Irene Tracey and her team at the Oxford University Brain Imaging Unit.

Issues covered in this programme include: Primary care, secondary care, brain imaging, medical research, policy, misconceptions, community care, education, educating health professionals, visceral pain, pelvic pain, spinal pain, neck pain, musculoskeletal pain, neuropathic pain, painkillers and brain signals.

Paul Evans: Hello and welcome to Airing Pain, the program bought to you by Pain Concern, a UK charity that provides information and support for those of us living with pain. This program was supported by a grant from Pfizer.

Professor Anne Taylor: Up till now a lot of people have said ‘Oh well, nobody will die of pain’ you know ‘let’s not be worried about it’. But you are one and half times more likely to die if you’ve got pain and you are twice as likely to die from cardiovascular or respiratory disease if you have got chronic pain.

Professor Richard Langford: British GPs are probably the best primary care system in the world. I am very proud of what we have created. We are fantastic at trying to pick up chronic diseases before they develop or to stop them from developing further, but we are not doing that with chronic pain, which actually is the biggest part of the problem.

Evans: This April the British Pain Society launched a new special interest group which hopefully will be a milestone in the management of our chronic pain conditions. I am Paul Evans and for this edition of Airing Pain I went along to the event. I started by speaking to Professor Richard Langford – he is an anaesthetist and pain medicine doctor at Bart’s Hospital in London. He is also the President of the British Pain Society.

Langford: Well today is actually a very important day for the British Pain Society. It is the launch of our Primary Community Care Special Interest Group. Some people quite like to call them ‘special expertise groups’, but special interest groups. This is one of eleven special interest groups in the British Pain Society.

At this particular moment in time, when we have two things happening on a national level: one is the opportunity to collaborate with the Royal College of General Practitioners over their decision to have a clinical priority program in chronic pain for the next three years starting from April of this year, for three years plus a further two years of activity after that, together with all that’s happening in the wider NHS – particularly in England with GP consortiums and commissioning.

So whatever shape that should take we are going to see our primary care colleagues maintaining and if anything, becoming more influential in the management of the health service and the direction of care for patients. It couldn’t be a better moment to be developing our general practice links and our general practice membership of the society.

Evans: Professor Richard Langford, President of the British Pain Society.

Now, Dr Martin Johnson is a GP based in Yorkshire. He has a long-standing interest in chronic pain and he is at the forefront of the medical politics and particularly the successful campaigns for pain to be made a clinical priority. Just recently he was appointed Royal College of General Practitioners UK Clinical Champion for Pain Management. So with 7.8 million of us living with chronic pain, why is it only now that now our pain has been granted official status?

Dr Martin Johnson: The unfortunate thing is that, even though we know pain is one of the biggest clinical challenges and there is so much data looking at the fact that pain is probably the biggest long term condition we have actually got, it is not recognised as a condition apart from… it is actually in Wales and in Scotland. But that doesn’t make everything – we need to have prioritisation round it within the medical communities. There have always been these examples of assumptions: that people don’t die with pain, but we know from the research –the excellent research from Scotland – that people do die quicker when they’ve got chronic pain.

So I think what we are trying to do is to raise it up a level. We are trying to educate people particularly within primary care and community care, because it’s not just doctors with pain – that is so important. We are trying to educate about the nature of chronic pain – that chronic pain is not just repeated acute pain – that actually there are changes that happen within our body and trying therefore to link this in to the GP consultation, to get systems running. In fact, literally it was only yesterday we got the approval as to what we will be doing in the first year.

Evans: So what’s that?

Johnson: One of the key things is because of the some of the other priorities or some of the other initiatives that are happening within the pain world, we are trying to link them particularly into the development of the five pathways for the Map of Medicine project which is happening under the auspices of the British Pain Society. One is on visceral pain which is going to be pelvic and pain of both male and female…

Evans: Could you just explain what visceral pain means?

Johnson: Visceral pain means pain with your organs, but the commonest pain within that is pelvic pain. In fact, those that deal with it constantly will actually say that the figures for pelvic pain is actually just as bad as the figures for lower back pain, though probably not within actual people attending GP practices.

We are going to look at spinal pain, so that’s going to be of all descriptions, including neck pain. We are going to look at musculoskeletal pain when it is not caused by inflammation, which is the rheumatology aspect – they will deal with that. We are going to look at neuropathic pain, so nerve-ending pain. We are also going to look at quite a unique pathway, which is going to be a pain assessment, particularly aimed at GPs, but really pain assessment at any point of contact.

Evans: Dr Martin Johnson, the Royal College of General Practitioners’ newly appointed Clinical Champion for Pain Management.

Now, Dr Mark Porter is a household name as a journalist and a broadcaster. He is chairing this launch of the British Pain Society’s Special Interest Group for Primary and Community Care. He is also a GP and has a long standing interest in pain management, having worked as an anaesthetist and in a pain management clinic back in the 80s.

Porter: Secondary care, hospital management of pain is very good, but I still think there is a lot we could be doing in primary care – the community, general practice, call it what you will – for two reasons: I think there is a big problem with people self-medicating – I don’t think Joe Public has much understanding of how painkillers are working or the best way to take them or what they should be taking them for or what mix should they be taking.

Evans: What do you mean by self medicating?

Porter: Well, I mean treating themselves over the counter. You buy aspirin, ibuprofen, paracetamol or codeine type drugs – we spend a fortune on these products – and people use them, often long term, without really understanding what they should be doing, without seeking expert help. When they do seek expert help in the community, GPs have varying degrees of expertise. You know, we could be doing a lot better at making sure… for instance, we don’t even have any national guidance on how to tackle pain, so it’s great if you are a hospital consultant or if you a specialist or an ex-anaesthetist but if you are a GP then it is one of a thousand things you have to know and you may not be as good at it, as you think.

Evans: But as a GP you are the first point of call, at least the first point of call for help for somebody in pain?

Porter: Yeah, we are first point of call after self-medication. So often, it is not unusual for me to see people who have taken medication for headaches for nine months before they come and see me. I mean there are others who come after nine minutes, but, you know, nine months they come and, actually, about half a million of people in UK have a form of headache that we think is caused by them taking painkillers. So they start off with something, they take painkillers for it and it ends up giving them a headache for which they take more painkillers which are creating more of a problem and all we do is simply stop the pills and they magically get better and they find that remarkable.

But that’s an example of when you have knowledge and you use it properly, you can get the best out of pain relief. But, for sure, for people with arthritis and lots of other conditions we are the first port of call and generally we manage it very well. But for more complex, long term conditions – managing somebody’s pain effectively, making sure they don’t have side effects – isn’t always a matter of simply getting the right medicine. It is also about state of mind and we know that the psychology of the patient, the doctor-patient relationship, all of those sort of things, explaining to patients what is going on, makes a massive difference to whether they are going to be someone who is going to be disabled by pain or be able to live with it.

Evans: You as a journalist and a frontline broadcaster with access to six million people – are you aware as a mouth piece that people look at pain correctly?

Porter: Well I think it’s a complex subject and the problem is that there is no such thing as an average patient, an average person with an average amount of pain. Each person is different. Our response to pain is very similar no matter what the cause may be. What I think what I want to do, is to address some of the myths and prejudices that surround pain and that’s probably the most useful thing we can do.

I’d love to say we can educate the public and teach them about pain and make a massive difference that way. But actually what we can do is cherry pick a few items. For instance, the use of opiate, morphine-type painkillers – there is a this general perception that these are addictive drugs – you know, you can end up becoming a junky if you start them, that they are given to people who are at the end of their life – all of those sorts of things. And that, for a while, held back the proper use of those drugs in cancer patients and they are myths. Used appropriately, these are not generally addictive drugs and they are very effective. I’ve got patients who carry on working on them in perfectly normal jobs.

Evans: A lot of pain patients come away from a GP, thinking – they have been sent for cognitive behavioural therapy, whatever – ‘it is in the mind’.

Porter: I think one of the things that people need to get to grips with – both professionals and the general public – is that pain is largely in the mind. The stimulus – whether it be a stubbed toe or an arthritic joint or a cancer in the bone or whatever, is very real – but the pathways that are taking that nasty signal go into the brain and it’s the perception there that matters.

To try and just identify pain as purely a problem with a joint – so if I get rid of that joint problem I will be fine – is simply not true. And we know that is not the case, that in or around, at least one fifth of people with long term pain, that signal going into the brain permanently changes the perception of that pain and it can blow it out of all proportion so it becomes an all-consuming thing. In the same way that, if I was to stub one of your toes and at the same time it was announced that you had won the lottery, you probably wouldn’t notice the pain coming from your toe [Evans: I’d be fine about it!] [laughter]… until afterwards.

We have all heard these situations – you are playing rugby and you get out of the scrum and there is huge gash on your leg and you never felt a thing – the minute you see it, you feel the pain. Well, the opposite can happen and in chronic pain, you over-perceive the pain and that is where interventions to try and change the person’s behaviour and perception – we are not saying it is all in the mind, but it is largely in the mind. And if you ignore that, you are just being daft.

Evans: Dr Mark Porter.

You are listening to Airing Pain and can I just remind you 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. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.

Now for a person with chronic pain, to be told that pain is largely in the mind, needs some qualification. For the launch of this Special Interest Group for Primary and Community Care, the British Pain Society invited Pain Neuroscientist Professor Irene Tracey to address the question. She directs the Brain Imaging Unit at Oxford University. So, all in the mind?

Dr Irene Tracey: It is, because, basically, pain is generated by the brain – that is the organ that gives you the experience of pain. A lot of patients get confused about this and get worried about that because they think when the doctor says that, the doctor does not believe that the pain is real, because they think the mind is something not real.

Evans: They think it is imagination

Tracey: They think it is imagination and in the world of neuroscience, which is the world I work in, and the world of brain imaging, the mind is the brain. And it plays out through brain regions and chemicals in the brain and different what we call physiological processes that basically allow the mind, if you like, to change experiences and so not only do those tissue damage signals – say from your bad knee or your bad hip – arrive into the spinal cord and then they go up. They can do all that but if the brain doesn’t get a hold of them, you won’t feel pain, so it is just as real as having more tissue damage sending more signals over the periphery. These things that can go on inside the brain can turn the volume up and they can turn the volume down.

Evans: Irene, you seem to have sorted all my problems out. I’m in pain, you are doing all this marvellous research in Oxford and you have found the region in my brain, one spot in my brain that sorts my pain, so we will mend that spot in my brain and I am done.

Tracey: Pretty much, but it is not as simple as that. It is not one spot in the brain and people have for many, many centuries thought that there must be a bit of the brain that is the pain bit – just like the vision bit or the touch bit – and it turns out, it is not like that. There isn’t one bit, because pain is not like that – pain is what we call an ‘emergent experience’, that ultimately you control, if you like, so that you have the appropriate pain for the situation that you are in, because sometimes you don’t want to be distracted by the pain.

If you have had half your leg bitten off by a lion, you really don’t want to be lying on the ground, worrying about the pain, because you are going to be eaten and killed and that is much worse so that is a worst outcome – so, you have a fantastic ability in the brain to switch it off. So in certain situations like that – that flight or fight response, you can just switch off those signals and the brain is the organ that does that. The brain just stops the signals even arriving inside the brain, so you don’t feel any pain and can get away from the lion. Of course, when you are away from that high arousal situation, those signals coming from the half-bitten leg will arrive and then you will realise that you are in a lot of pain.

So, it is the case that there are dedicated areas of the brain that allow you to experience pain but it is a whole network – it is about ten different regions and together, in a very flexible way – these regions will activate more or less, sometimes not, sometimes yes and they will vary their activation, because in effect, that is what is going to control what the type of pain is you are going to experience, depending on the situation. And sometimes, it will do it such that it won’t even allow the signals to come in, so it is a flexible system.

There are certain structures that are very important and seem always to be there and on so that does give us some idea where we should be targeting, in order to get pain relief. So there is a common set of structures that always seem to activate and that is very useful to have as a marker and to have as a target for therapy but there are many other structures that can or cannot come in and that will give you the change of quality of the pain.

Evans: How do you know this?

Tracey: Well, we have several different brain imaging tools that can look inside the brain or spinal cord whilst you are living and sitting here right now here with me, talking and breathing, because they are non-invasive. And so, we have these tools, which allow us to see where, in effect, oxygen and blood and glucose is being delivered to feed the neurons that are doing the job of whatever it is that you are doing, feeling or experiencing.

For pain, in our lab, we will take healthy people, we will burn them, we will poke them, we will do all sorts of nasty things to them. They’ll have pain experiences and we will see where the blood flow is going to different parts of the brain and that tells us which are the bits that are important for experiencing pain. And then we test that that is real in patients and we show that different parts of it might be more dominant in one type of patient – other bits of the brain, say giving you the fear side of pain as opposed to the location of where the pain is – these are processed by different brain regions.

What we might show, is that in one patient group threat and fear and anxiety might really be a very, very key factor for their pain and that is turning the volume up. So that it is not just changing the way they describe the pain, which you might suspect from someone who is more anxious or depressed about something – you might just say ‘well, that’s changing the way you describe things’ – what we have shown, is that indeed, these changes in your anxiety or depression fundamentally act through brain systems, they switch them on and if they are switched on and then that pain signal comes in, it is going to be processed differently and what it does, is it changes the processing and actually makes it worse, unfortunately. So again, it is changing the pain, just as much as if you were sending in more tissue injury signals.

Evans: Knowing what is happening is all very well, how will your research be used to conquer chronic pain?

Tracey: We need to characterise our patients better and to understand what it is for that patient, predominantly making them in pain. Is it really a peripheral input – is it really the bad hip – or is it actually these amplification mechanisms? You will never very easily unravel that, just from the person saying ‘yeah, it really hurts’. Is it hurting because it is sending more signals over the periphery? Should I be targeting my therapy to the periphery or targeting it centrally? So by us, sort of showing, which bits do what and having these sort of markers, we can help dissect and diagnose what is underlying somebody’s pain and that can guide where the therapy should be most appropriately placed.

It can also be used for predicting outcome of say, surgery of joint replacement. The prediction of whether that particular type of drug is going to work for you or not, or whether it is going to work really well or okay and, if it is going to work okay to not at all. This is really valuable – don’t put the patient on the medication if there is a very low probability that it is going to work, because they have a certain type of mechanism underpinning their pain that is not suitable for that drug.

Again, what we can do with the imaging is to start to contribute to the better understanding of those mechanisms. Now, I am not suggesting that all patients are going to come and be referred for an FMRI exam or functional imaging exam because it is very specialised and quite expensive. But if we can prove the science and understand it and come up with these markers, then our job in the next phase is to, what we call, reverse engineer that understanding into simple tests that can be done on the bedside, that reflect what is going on with the brain imaging but could be done by their GP, which then, in effect, classifies – ‘yes, you are the type of patient who if I put you in for the FRMI would have that type of signal; you are the type of patient that would do that and I don’t need to do the FRMI because we have already done the science to prove this. This test I am doing proves that you have got that’. And then you would be able to guide the therapy better. So that is what we hope to do. It is the translational bit of it, now to come.

Evans: Does this mean that therapies like cognitive behavioural therapies, relaxation therapies are a waste of time?

Tracey: Oh, not at all. I think again that what the brain imaging has shown is that these therapies are basically training patients to cope with the pain, to use the power of their brains to modulate. We have got these incredible inbuilt systems of modulation which are unique to pain. We don’t have them for any other sense and we have them because it is really important to be able to control pain, going back to that lion biting your leg off – you know, it is these control systems that block the pain. It is really important to be able to control pain and what a lot of these therapies are doing is training people to use the brain and access different parts of their brain which can help take the hurt away and help them cope with it and think differently about it – you know, change the meaning of the pain.

An analogy: you know we have done some fun experiments – I call them our Friday afternoon experiments – where we have made pain pleasant. Now, there are some people out there who know people who find pain pleasant for many reasons, but let’s just take, people who like hot chilli peppers, people who go on marathon runs and extreme exercise where the body is aching, they like it because the associated meaning of the pain is good. So we know pain and pleasure interact. It interacts, it actually overlaps a lot in the brain so, these sound like fun and slightly crazy experiments but what they are telling, at a very deep level, is that if we can work and understand how we can flip pain into being pleasurable or changing at least the hedonic value of it – that is an outcome. We can take the hurt away, we can change the meaning and we are learning what brain regions can do that and what we have got to do, is work out how to train patients, whilst we are still waiting for new drugs that are going to block it in the periphery or in other places.

These are incredibly effective therapies, which are acting through these wonderful systems that we have got. Some people naturally just tap into them and use them and they are great copers and they find they can get a lot of pain relief without having to go on a course, others are not equipped to know how to access them, so they need the formal training as to how to do it. As I say, they are very powerful and they are tapping into fundamentally to the very similar overlap of systems that in effect the drugs are going to work on. So, ideally, we always want to be addressing that angle, as well as trying to get the right drug for you.

Evans: Professor Irene Tracey, Director of the Brain Imaging Unit at Oxford University. You are listening to Airing Pain with me, Paul Evans and I am at the launch of the British Pain Society’s special interest group for primary and community care. Now one of the speakers was Anne Taylor of Cardiff University, she specialises in pain education and her presentation was provocatively titled ‘Nobody dies from pain or do they?’

Anne Taylor: Up till now, a lot of people have said ‘oh well, nobody will die of pain’ you know ‘let’s not be worried about it’, so pain has not necessarily had the focus as it deserves or prioritised as it should. But Blair Smith has produced figures now to show that in fact you are one and a half times more likely to die if you have got pain than a person who hasn’t got pain and you are twice as likely to die from cardio-vascular or respiratory disease if you have got chronic pain.

I think that is because of things like you are unable to move so you are unable to exercise, you lose your job, so your diet is poor, you resort to smoking and alcohol if you are not well managed, so it is multi-factorial reasons and those are just some of the reasons off the top of my head.

I think my quest has always been trying to educate health professionals to understand that chronic pain is a condition and it is totally different from acute pain as a symptom – if only chronic pain was that simple, that you had a physical pain and nothing else. So it is not a simple entity and I think that punchy message is just to get people to have a wake up and to think that yes, people can die of pain and we need to be prioritising it and doing something about it.

Evans: So what’s the answer?

Taylor: Joined-up thinking is really, really important – actually moving away from these kind of helpful silos where you have the NHS working independently from the Department of Health, Work and Pensions. Getting those joined up, getting more involvement of occupational health services, getting more services closer to patients homes, so that people are assessed and managed early in their pain career so that patients do not have to resort to trying to persuade people constantly that they are in pain and actually trying to get something sorted early – so early management, joined up thinking and better education across the board but all of that is going to be difficult.

Evans: You are involved with the training of medical professionals

Taylor: Well, I’m involved in the undergraduate pain curriculum which is chaired by Nick Allcock, looking at a generic curriculum for all people who have been training as healthcare professionals and there is patient input into that. I am also involved with running a post-graduate masters programme which is a multi-professional course – it is e-leaning which involves all healthcare professionals. I have just launched a 12-week foundation in pain for primary care for GPs, to get better educated – again it is an e-learning course. In the future we are going to be developing a diploma in pain management specific for the primary community care because that is where I think the majority of pain should be managed.

Evans: So since the launch of your e-learning website, is there any evidence that GPs and health professionals are really beginning to take up the gauntlet?

Taylor: [laughing] No, is the easy answer, because we know that we have had 12,000 hits of unique user hits since October, so it is doing really well, so people are accessing the material, but the problem in education is always this theory of practice gap – how much of that education is actually going to influence practice? So, yes we have got lots of proof that the education we run is being taken up because we are inundated with people for the masters programme and the stand-alone module on the website, but how that reflects in practice? We don’t know and that is always a problematic area to research.

Evans: Anne Taylor of Cardiff University. You are listening to Airing Pain and Professor Richard Langford, President of the British Pain Society asked his audience at this launch of their Special Interest Group of Primary and Community Care, whether the profession should abandon the terms ‘primary’ and ‘secondary’ care. I have to say that he did not get much of a response.

Langford: It was to tease them a little bit with this concept but generally speaking there is a move towards more seamless care although there may be geographical differences – there will be different buildings still – there will be a hospital and general practices and community clinics and so on – that the concept that people move fairly freely between them and some people who are actually employed in the community will nevertheless have activity in the hospital clinics and vice versa. That there is free movement and it is really seen as one system is the way we should go. So, there may be delivery of some very specialised services in the hospital, but essentially the generalised care is the province of everybody.

Evans: The title of the launch, you have put at the top of your title, ‘how to change heart sinks into favourites’. What do you mean by that?

Langford: Very straightforwardly, that this is not meant remotely in a derogatory way about patients – it is very straightforward – that a number of patients have very complex problems and it is not that there is any dislike or so of the patients themselves – it is that the conditions they have are complex and when practitioners are often in control of what they are doing find they come up against something which is really difficult, or for them – they are not adequately trained or experienced enough and that can always be the case, especially in general practice where, I take my hat off to colleagues who have to be jacks of all trade and deal with everything that comes in through the door – that clearly it can be frustrating and it can be an anxious or stressful matter for the doctor or nurse dealing with such a complex set of problems.

Johnson: British GPs are probably the best primary care system in the world – I am very proud of what we have created – we are fantastic at trying to pick up chronic diseases before they develop or to stop them developing from further but we are not doing that with chronic pain which actually is the biggest part of the problem – so we need to address it in a more of a system and just think about within the holistic type of consultation and hopefully, we can give you some tools to help you. At the moment, the GPs will probably struggle, because they probably don’t have the tools but I am hoping they soon will.

Evans: An average appointment lasts 10 minutes

Johnson: 10 minutes, yes

Evans: Is there money for this?

Langford: No, there is no money actually physically associated for the GPs managing this correctly at the moment though, this is why we need to get it linked in with quality standards. But, there are also other incentives, for example being very blunt – what we have seen in the States for example, patients have been pursuing their doctor if their pain has not been managed correctly and in fact, if it is over-managed. Hopefully, we don’t have that model in the UK but I think we need to look at other incentives. An incentive for prescribing correctly even though from what I have been told this week, prescribing incentives are probably going to go out the window. Well, actually one of the incentives for the GPs – the GPs are going to become the purse string holders and if we actually manage pain correctly, we reduce costs – that for the GPs will be a very, very big incentive.

Evans: What would your message be to GPs?

Johnson: Just think pain, be aware of it and be aware that you can do something about it.

Evans: Dr Martin Johnson, the Royal College of Clinical Practitioners UK Champion for Pain Management. That is the end of today’s edition of Airing Pain which is made by Pain Concern, the charity that provides information and support for pain sufferers and those that care for and about us. You can download all the past editions from Pain Concern’s website at painconcern.org.uk but before I left the launch of the British Pain Society’s special interest group for primary and community care, I asked Professor Richard Langford, President of the British Pain Society what he hoped the outcome of the new group would be and what would leave him smiling at the end of his tenure.

Langford: If we could see that the special interest group will grow and flourish, it will increase in membership – that there is ever increasing dialogue between the traditional secondary care specialist, many of whom are moving into delivery of care into the community and primary care as well. If we have ever increasing dialogue and a stronger relationship with the Royal College of General Practitioners and actually in so doing, provide a smoother and better service for the patients, then that would be I think, something I could look back on as a very pleasing outcome.

Contributors:

Professor Richard Langford – BPS president
Dr Martin Johnson – RCGP clinical champion for pain management
Dr Mark Porter – Celebrity GP and journalist
Professor Irene Tracey – Director of the Oxford university brain imaging unit
Ms Ann Taylor – Pain community centre, Speaker at event.

The healthcare professionals transforming pain management, and we take a closer look at how pain is produced by the brain

Plus, is pain all in the mind? Paul Evans learns about the science behind pain in the brain and the exciting studies being done by Prof Irene Tracy and her team at the Oxford University Brain Imaging Unit.

Contributors:

Professor Richard Langford, BPS president
Dr Martin Johnson, RCGP clinical champion for pain management
Dr Mark Porter, Celebrity GP and journalist
Professor Irene Tracy, Director of the Oxford university brain imaging unit
Ms Ann Taylor, Pain community centre, Speaker at event.

Getting mind and body working together on a pain management programme, and loosening up with hydrotherapy

To listen to this programme, please click here.

Prefer a PDF?Download

Pain management programmes teach people with pain the strategies they need to live as full a life as possible. Paul Evans talks to patients and professionals at Astley Ainslie Hospital in Edinburgh to hear their uplifting approaches to pain management. The programme focuses on the way that mind and body work together, with psychologists playing as important a role as physiotherapists. It looks at how tackling negative thoughts and patterns of behaviour are as crucial as dealing with the physical aspects of pain.

We also get an insight into the amazing benefits of hydrotherapy for those in pain, helping people to take the first step towards getting back into exercise.

Issues covered in this programme include: Psychology, interaction between mind and body, managing thoughts, hydrotherapy, physiotherapy, mobility, activity, patient behaviour, pacing, the biopsychosocial model, tailored exercises, patient education, ACT, acceptance and commitment therapy, joint pain and back pain.

Paul Evans: Hello and welcome to Airing Pain, a program bought to you by Pain Concern, a U.K. charity that provides information and support for those who live with pain.

Pain concern was awarded first prize in the 2009 Napp awards in chronic pain and with additional funding from the Big Lottery Funds Awards For All programs and the Voluntary Action Funds community chest, this has enabled us to make these programs.

David Gillanders: No matter how much pain you are in, no matter how difficult the things are for you, no matter how depressing and sad this has made you feel, you are not broken. It’s simply that the strategy you are using to try to live your life with these conditions, is not a workable strategy.

Derek: She tells you as it is – it’s real. And she tells you that disease is not curable but she picks you up and builds you back up again in terms of getting a new life style and confidence to do things that to me she is great. She’s my hero actually.

Paul Evans: [Laughs] More on those acts of heroism hope later in the program. I am Paul Evans and in the series of Airing Pain we have been highlighting different approaches to pain management throughout the UK. Now the Astley Ainslie Hospital in Edinburgh provides a range of services for those in chronic pain conditions and John McLennan is the Lead Physiotherapist for the Lothian Chronic Pain Service there. I asked him how he assesses somebody who walks through his door for the first time.

John McLennan: Firstly, we will spend a lot of time talking with the patient and them explaining to us the impact of their pain on their day to day life, on their quality of life, the impact it has on what they can do or can’t do from a 24-hour perspective, but also from things they can no longer do like sport or go dancing or go out and meet friends.

But we will also look for some objective measure of what patients can or can’t do and a colleague Vicky Harding put together a battery of measures that we use here. So we get patients to do four things: we get them to walk for five minutes – we see how far they can walk for five minutes; we get them to do some stairs for a minute; we get them to do a reach test and a couple of other measures that we use. At the same time that we are doing that, we also look for what’s called ‘pain behaviour’. So they may hold their breath, they may grimace, they may rub the painful part and there is a way in which we can assess in a standardised way the level of pain behaviour that the patient exhibits, while they are doing these tasks.

And finally, we also ask patients to rate their pain before and after they do these tasks and usually the pain will increase because they have been physically active. And that gives us an idea of how doing things impacts on patients’ pain. Because one of the things we will teach patients is how to pace their activities, so how to do things without increasing their pain.

Evans: How closely do you work with the psychologists?

McLennan: Very closely indeed. Most patients have a joint assessment. They will meet with a physiotherapist and a psychologist. At the moment we are going through a process of change looking at different ways of doing that. But up until now, that has been a joint assessment, so we’ve had the patient, the psychologist and the physiotherapist all in the room at the same time. At the end of the assessment, we will agree a treatment plan with the patient, which may or may not involve the psychologists. If it does, so if the patient is going to see both the physiotherapist and the psychologist individually, then there will be quite close liaison between the two professions in terms of the patient’s progress.

Leanne Nicholas: My name is Dr Leanne Nicholas and I am a chartered clinical psychologist and I work half my time here in the Lothian Chronic Pain Service. We’re very much based on a biopsychosocial model. That means that we look at the biological aspects of the pain and how it has affected someone – what medications etc. they have tried and whether surgery etc. has been offered in the past. We then look at the some of the psychological aspects of the pain: how that pain has affected the way they are feeling within themselves and how the pain has affected their activity levels. Changes in patterns or could be changes in the occupations, functioning in work and social functioning. People often find with chronic pain they can’t participate as much in hobbies and interests that they used to enjoy. We also look a little bit at what life was like prior to the pain to get a whole sense of a person.

Biopsychosocial would say that our minds and our bodies are not two separate things and that they interact with each other. If I ask someone to give me an example that can help them see those links, they would maybe say, ‘Well, if I wake up in the morning and I am really sore, I know it’s going to be a bad day. And so I have a thought in my mind that this is going to be a pretty rubbish day, then I might feel a bit more down and then the way I am going to approach the day with all the activities I had planned might therefore change.’ So you can see how those three areas, the physical areas, the way we are thinking and feeling can impact on the way someone will react in terms of behaviour.

Sometimes that can then get into unhelpful patterns where you can be linked into vicious cycle. And those are the types of things we look for in the assessment, because that’s where we can maybe introduce some coping strategies that can help to break those links. Often by the time they come to our service they’re feeling as if they are stuck with their pain. So we are looking at areas where we can introduce new strategies or strategies that people have tried before and maybe didn’t work then but might work now with a bit of support.

Paul Evans: Can you give me an example of how people might feel stuck?

Nicholas: One example would be with the activity patterns. Sometimes people feel that they got into a battle with their pain and they try to push in to their pain. By keeping up all their activities that they want to get done in a day, but that can result into feeling sore and exhausted and it can make people feel quite down on themselves when they have not managed to achieve the things they wanted to achieve. So, this kind of pattern of doing too much and then suffering for it and having to take time out to rest can be really demoralising over time. So that’s one of the patterns we look for and to help people begin to work out what their limits are and what they can manage and do those activities in a paced way, so that they can gradually work up to the level they like to get back to without pushing into the pain and flaring the pain system up.

McLennan: We also run a pain management program here which is a 12-week program and that is delivered by psychologists and physiotherapists. The nurse is involved as well as is the assistant psychologist. So again there is a very close working relationship between all of us as a team.

Evans: What happens on the pain management program?

McLennan: It’s an opportunity for patients to practise putting into practise the ideas that other people have found helpful. So one of the things is they start an exercise program. Many patients are not involved in any kind of exercise program aimed at helping maintain fitness because people are frightened of hurting themselves or less able than they used to be.

Some people are fearful of making things worse, so we have an exercise program which is aimed at not exacerbating people’s fear of movement and activity. So the program starts at a very low level, but it can go quite far. Once we got the program going, we will then start to look at individualising it. So if someone has got a knee problem, then we will look at what we should be doing for their knee problem. If they’ve got a back problem or a neck problem we will give them individual tailored exercises. And it can go to a level where you are looking at cardiovascular exercise.

So it can start to help people either speed up, because they have slowed down, or take on cardiovascular work, if that’s appropriate. We will also look at education. People have unhelpful beliefs, if you like, about what’s wrong with them, so we will teach them about pain, about pain mechanisms, about pain anatomy posture, that sort of thing. We will teach them how to pace their activities. The exercise program is designed around the idea of pacing your activities, so you are not making your pain worse, so we will then extend that and teach people how to go about their day to day activities without making their pain worse. We will also teach them how to manage their thoughts. Quite often people’s thoughts are perhaps unhelpful, so the psychologist will help people develop a way of assessing their thoughts and managing their thoughts in a way that is less unhelpful.

Evans: John McLennan: lead physiotherapist for the Lothian Chronic Pain Service and before him, you heard Dr Leanne Nicholas Clinical Psychologist at the Astley Ainslie Hospital in Edinburgh. And you can read the patients view of attending the hospital pain management program at Pain Concerns website, that’s painconcern.org.uk. Just look for ‘Pain management: a new lease of life’ under the ‘Articles about pain’ heading.

Now, Dr David Gillanders is a clinical psychologist who shares his time between the University of Edinburgh and the Lothian Chronic Pain Service. For his clinical work he uses a model called ‘acceptance and commitment therapy’ (ACT). Now, to me the word ‘acceptance’ has a ring of resignation about it, is that really what it’s about?

Dr David Gillanders: People have sometimes been told by well-meaning health professionals, ‘Oh the trouble is you don’t accept what’s happened in your life.’ When we talk about ‘acceptance’ from an acceptance and commitment therapy point of view, that’s not the kind of definition of acceptance that we mean, what we really mean is an active choice to let go of struggling with whatever the current circumstances that someone is having to deal with. So, often, in terms of clinical work I do, I would very rarely use the word ‘acceptance’, instead I would use the word ‘willingness’. Are you willing to have your medical condition as it is and to let go of struggling, let go of needing to change it or needing to remove it before you take needed steps towards things in your life that matter to you?

What we would do in the typical assessment process – assessment engagement process ––– would be to provide a safe relationship with the person who is able to talk about the ways in which their condition whatever it is has affected them, some of the impact it has had upon their life.

We then further ask them to explore, what are the things you have been doing to try and deal with this condition, and we would want to get them to generate pretty much an exhaustive list of all the things they have been doing to try and deal with this condition and we then ask them the really difficult question – and we do this with heart and sensitivity – we ask them to take each of the things they have just described about what they have been doing to deal with this condition and we say, ‘how well has it been working in terms of you living the kind of life you would like to live? Is it effective for me or not?’

If the answer is ‘yes’, we say ‘great’, keep doing those things. If the answer is ‘no’, then maybe something has to change. Maybe something different is possible.

Evans: So if I come to you and I say, ‘Listen, I want to walk up Snowdon, I want to walk from John O’Groats to Land’s End I want to do all those things. Every time I try to do it, I just blow myself out.’ There is something wrong with my thought pattern?

Gillanders: Well, first of all I wouldn’t suggest that there is something wrong with your thought pattern. We would, first of all recognise – I noticed the way that you talked about those things and how your eyes light up when you speak about the value that’s in there for you: the value of being outdoors in nature, the value of doing something active… perhaps there might be other values in there for you, for example, perhaps there is someone I always do these kind of walks with and it’s connecting with that person that really matters to me.

So we might make it that we help you to connect with, what is it about those particular activities that you really care about. And if it is the case that those activities really aren’t possible to you, we might try and figure out with you what are some other ways that we can get that value into your life that might not necessarily be walking up Snowdon but might be, for example, doing some other activity with that friend you usually do that with or there might be, for example, some other way of accessing nature or whatever it is the particular value is about there.

More specifically what we also do is we’d say, ‘Ok, well what have you been doing to try to get back to that part of your values?’ And in general when we do that piece of work with someone we are able to help them get more in touch with the idea that the strategy they have been working on has been once I get rid of my condition, then I will start to do the things that matter to me. Not always but that’s generally a strategy people are operating under and what we ask is, is it working? If it isn’t working then maybe the strategy needs to be changed.

Now one of the important implications of that, is that very often we are giving a message to people that, no matter how much pain you are in, no matter how difficult things are for you, no matter how depressing and saddening this has made you feel, you are not broken. It’s simply the strategy you are using to try to live your life with these conditions is not a workable strategy.

Now there are certain values whereby if we break it down to smaller steps and use very a behavioural type of pacing strategy that is designed to carefully and slowly and gradually build up someone’s functional capacity, someone’s tolerance for activity, that for some people climbing the mountain might well be an achievable goal for them in the long term, if it’s done in a slow careful graduated way. For some people that might not be the case that that’s the case for them and what we would want to is try and help them to come up with more specific, concrete achievable steps, but linked in this general direction of their values of what that it is they care about, so that there is always a sense that they have a direction that they are headed in.

Evans: That’s the acceptance, where does commitment come in?

Gillanders: So if you are the person who has struggled with chronic pain for a long time and you have fears that ‘if I do activity, it’s going to injure me, it’s going to hurt more’, then you set yourself a goal which is, ‘I am going to take a short walk in the countryside’, because that’s linked to this goal of maybe one day I might be able to climb Snowdon’. But in the here and now it’s linked to this value of being one with nature of getting fresh air, etc.

As you begin, even on that first few steps of the walk, your mind is likely to be giving you stuff like ‘this is going to hurt, this is difficult, I better just go back to the car or I better go home, or why did Dr Gillanders suggest this in the first place, etc., etc.’ So when your mind is giving you all these kind of, in some ways, bullying, critical attacks. Well, the stance that you have towards that stuff is really critical, really important and it’s very unlikely that you are kind of able to get rid of those thoughts, to conquer them or defeat them. So you want then to try and encourage a willingness and acceptance to have these thoughts as they are, as thoughts, as difficult thoughts but none the less simply thoughts and to in that moment commit to the behaviour that will lead you in the direction that you most want to go. So the idea behind acceptance and commitment therapy – I use this all the time with people I work with – is, actually, it’s very simple, but it’s not easy.

Evans: Dr David Gillanders. So what’s the evidence that acceptance and commitment therapy has real value for those with chronic conditions? Nuno Ferreira is one of his doctoral students at the University of Edinburgh. He has been researching its efficacy on people with irritable bowel syndrome.

Nuno Fereira: Irritable bowel syndrome is the most common functional gastrointestinal disorder so we have developed a few questionnaires to look into this particular concept of acceptance. And the results that are coming back are basically if they have a more accepting stance, if they continue to engage in activities that are more important for them, they are more likely to have better outcomes, whether its quality of life, depression, anxiety or even in terms of symptom severity, which is quite curious, because, in a way, acceptance and commitment therapy or the model itself, it’s not prone to reduce symptoms to reduce the experience of symptoms.

What we have done is we have taken a model that has been used successfully before with other types of conditions, which is to do very small group interventions, a very short group intervention. In this case, we used a one-day workshop, where people were invited to come in. We would walk them through the model, through the several steps of the model and then we follow that with a work book that we have prepared, so that people can take what they have got from the workshop and then, with the help of the workbook, try to engage in those steps in a period of, say, two months.

We also got in touch with the patients who participated in the workshops two months and six months after to see how they were doing and the results that came out, basically, you know, improvement across the board in terms of everything: in terms of symptoms severity, quality of life, less engagement with things like avoidant behaviours and more engagement with valued activities. So behaviourally there was this shift as how people approach their illness.

And even things like the frequency with which they had certain cognitions about their illness – even that changed. In a way we were hypothesising this was because this became less relevant to their lives. So they took a step back and said, ‘Ok I am having these thoughts, these thoughts are a part of my illness experience and I can have this illness experience while at the same time have a valued life.’ So we see the shift in behaviour: instead of ‘I need to get rid of my illness experience in order to have a valued life.’ We have more ‘I can have it, and a valued life.’

Evans: That’s Nuno Fereira of Edinburgh University.

You are listening to Airing Pain with me, Paul Evans, and I just like to remind you that while 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 health and wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate actions to take on your behalf.

Now I am returning to Astley Ainslie Hospital in Edinburgh. Not to the consulting rooms this time but to join Margaret Kerr, she is the Hydrotherapy Pool Coordinator for the Lothian branch of the charity Back Care.

Margaret Kerr: Hydrotherapy is the exercises that have been taught by our physiotherapist in a higher than normal temperature pool. It is not a quick fix for people but it is a tool to encourage them to start exercising their muscles and when these muscles are toned up a wee bit better, it hopefully… they would move on to some other form of exercise. We don’t only take people with back pain – we take people with any kind of pain. Whether it is fibromyalgia, arthritis, we had people with knee replacements, hip replacements – I don’t turn people away.

Evans: I suppose the theory is that in water that’s taking all the pressure of …

Kerr: That’s right and it means that for a lot of people it frees them up and if they maybe had muscles at spasm, automatically, going into warm water what happens to your muscles is they relax. If you go in to a pool that’s too cold, your muscles are not going to relax and most leisure pools are too cold to people with chronic pain.

Evans: What sort of temperatures are we talking about in your hydrotherapy pool?

Kerr: I would say, it’s the temperature not far off having a really quite a warm bath. The other thing with the hydrotherapy pool is the empathy people have with other people using it. I would always see that you are not going in to that pool and start moaning about all your pain. We all know when we are not just quite right and sometimes somebody else will say, ‘Oh, have you tried such and such? I go to this sort of exercise. I find Tai chi helps. I find Pilates helps…’ It’s a very good tool for us to start with people to find out what’s right for them. Whether they carry on using the pool [or not], that’s fine. If they use it for two months, three months, six months, for years, it doesn’t matter if they find it’s helpful.

Evans: How do people get to use it, do they book it through you?

Kerr: They book it through me normally. I book them in with a taster session first of all of three half hour slots on a Tuesday night with our physio. If somebody needs more than that, that’s not a problem because some people are just not confident enough to carry on without the physio being on hand and that’s ok. We have two physios at present, one is on maternity leave unfortunately, but we have Lorraine as well and she is a pain management orientated physio, which to my mind they look at things differently.

Kerr: Do you want to go through and see the pool?

Evans: Yes, please.

Kerr: This is Lorraine, our physio, and in the pool is Derek, Catherine, Joy and Asha.

Lorraine: My name is Lorraine Rahimian and I am a physiotherapist.

Evans: And you are actually standing in the pool. The first thing I notice is that it is very hot.

Lorraine: It is very hot… very hot.

Evans: Why is that?

Lorraine: Because we need the heat to help this hot water, warm water so it’s to help soothe the aches and pains for the patients who come to do exercises in the water.

Evans: So how are you helping them?

Lorraine: Well, I think the valuable thing is it’s the community, people are all here with similar problems, as in chronic pain, and so they come and do exercises in the water, which they would find difficult to do on land because the buoyancy of the water is an assistance for them.

Evans: So the water is taking the strain away?

Lorraine: It takes the weight.

Evans: I see the gentlemen here…

Lorraine: That’s Derek…

Evans: You’ve got a rubber ring on your foot underneath the water and you are just raising your leg up and down.

Derek: When I first came here I couldn’t even lift it four inches but with Lorraine’s assistance we have managed to slowly get this joint more mobile and it’s been absolutely wonderful.

Evans: Which joint is that?

Derek: It’s my left hip. I have got a peculiar disease called ‘Paget’s’. It’s actually seized this joint, so what Lorraine has done is given me some exercises to get the joint pliable so that I can walk again. She has been my hero actually.

Evans: Why is that?

Derek: Well it first started in terms of going for a pain management course. She tells you as it is – it’s real and she tells you that the disease is not curable. But she picks you up and she builds you back up again in terms of getting a new life style and confidence to do things. To me she is great. And now great that this week I got the sign-off from my doctor that I can actually go back to work in two weeks for two days a week and that’s after three years I’ve been in treatment and rehabilitation.

Everyone here thinks I have done brilliantly because people have taken six or more years to do what I have done. But it’s Lorraine and Joan as well – they are a great team and really caring and they thoroughly understand. It’s very personal, because each particular case is personal. And they know how to get you motivated. It’s also about self-help and they actually get you to say, ‘well look – go here, go here’. To me it’s great.

Evans: So, hydrotherapy isn’t just about your hip joint?

Derek: No. No… It’s the whole group effort, understanding, getting little tips and then suddenly from that tip, suddenly you get a spark and then suddenly you get a blaze. These guys don’t say ‘no’, they say ‘You can do it.’

Evans: Whatever you’re giving him, Lorraine, you ought to bottle it!

Derek: No, they’re good.

Lorraine: This is Joy. Joy has back pain.

Joy: Hello.

Evans: And how is the hydrotherapy helping you, Joy?

Joy: Well it loosens. I can do exercises here that I find difficult to do on land.

Evans: So what sort of exercises do you do?

Joy: Rotation, just general strengthening against the resistance of the water.

Evans: So how long have you been coming?

Joy: Couple of months, but my back is a long standing programme and I have managed to work all my life, but at odd times things have gone wrong and I have come and had hydrotherapy.

Evans: How do you start working on someone like Joy?

Lorraine: I think, the first thing is, we start at a very low level and pace up. So we introduce pain management techniques really into the advice we give. Joy, would you agree?

Joy: Yes… yes.

Lorraine: We try to do things in stages and chunks.

Joy: And Lorraine always has another tip to help with daily living.

Evans: What sort of tips have you found helpful?

Joy: The bar in a pub, the Bentley, it’s along at the bottom. So I open the cupboard of the kitchen and put my foot there and it eases the sciatica [laughter]. You talk about the bar at the pub, didn’t you?

Lorraine: I think a lot of the patients benefit from doing balance work in the water, so it’s not particularly specific to joints and spine…you know…it’s the whole person.

Joy: Well, I know that tomorrow I will be very good and I will be able to walk a long way and walking suits me.

Lorraine: Try and have a holistic approach, I must say.

Joy: And the chat is good fun as well, isn’t it?

Evans: And that’s the end of this edition of Airing Pain. You can download this and all the previous editions from our website at painconcern.org.uk but I will leave you with Nuno Fereira and some thoughts on acceptance and commitment therapy from his hopefully soon to be published research and workbook.

Fereira: At the end we have a poem that sort of encapsulates what the whole model is about:

‘I might have flaws, live anxiously and sometimes get irritated,
But I do not forget that my life is the world’s biggest enterprise
And it’s up to me, not to let it go bankrupt.
To be happy is to recognise that it’s worth living,
Besides all challenges incomprehensions or periods of crisis.
It is not to let ourselves be the victim of problems,
And to become the author of our own story.
It’s to cross deserts outrageously,
But still be able to find your own oasis in the deepest of your soul.
It’s to be thankful each morning for the miracle of life.
To be happy is not to be afraid of your own feelings,
It’s to know how to speak about yourself.
It’s to have the courage to hear and know.
It is to have the security to hear your critic, even an unfair one.
And if I have rocks in my way,
I shall keep them all.
One day I will build a castle.’

Contributors:

John McLennan – initial assessment of patient
Leanne Nicholas – clinical psychologist’s approach, thought strategies
David Gillanders – Acceptance and Commitment Therapy (ACT)
Nuno Fereira – ACT and its effects
Margaret Kerr – hydrotherapy and how it works
Lorraine Rahimian and patients – hydrotherapy in practice.

Getting mind and body working together on a pain management programme, and loosening up with hydrotherapy

We also get an insight into the amazing benefits of hydrotherapy for those in pain, helping people to take the first step towards getting back into exercise.

Contributors:

John McLennan, initial assessment of patient
Leanne Nicholas, clinical psychologist’s approach, thought strategies
David Gillanders, Acceptance and Commitment Therapy (ACT)
Nuno Fereira, ACT and its effects
Margaret Kerr, hydrotherapy and how it works
Lorraine and patients, hydrotherapy in practice.

Better communication for doctors and patients and how to make the most of medical appointments

To listen to this programme, please click here.

Prefer a PDF?Download

Communication is fundamental to the relationship between patient and healthcare professional. In this programme Airing Pain looks at this issue from both the patient and doctor’s point of view. Psychologist David Craig of Glasgow comments on his communication skills training DVD for chronic pain professionals. GP Mark Ritchie explains how depression and chronic pain can be linked, and gives advice on how patients can prepare for medical consultations, using the memory aid: Ideas, Concerns, and Expectations. And finally, we hear from a number of patients about how they effectively broke down any communications barriers with health professionals in order to gain the most that they could from their consultations.

Issues covered in this programme include: Communicating pain, depression, medical consultations, appointment preparation, educating health professionals, GPs, psychology, anxiety, listening to patients and ICE: ideas, concerns and expectations.

Paul Evans: Hello, and welcome to Airing Pain, a program brought to you by Pain Concern, a UK charity that provides information support for those of us who live with pain. Pain Concern was awarded first prize at the 2009 NAPP Awards in Chronic Pain, with additional funding from the Big Lottery Funds Awards For All Program, and the Voluntary Action Fund Community Chest. This has enabled us to make these programs.

Ron Parsons: I’m of the age where, as a young person, I went to the doctor and listened to every word he said. Didn’t dare argue with him.

Mark Ritchie: The average GP out there needs to be looking for pain, obviously, and looking for ongoing pain and deciding where his level of expertise ends and when he needs to refer on or when he needs to ask for help.

Marion Beatson: You’re frightened to actually say to doctors, ‘No, you’re wrong,’ whereas we should be more open to say to the doctor, ‘I’m not happy with what you’ve told me.’

Michael Morrison: When I go in to see the doctor, the doctor is the medical man. He knows about the drugs, etc. I’m the one that knows about my pain.

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Paul Evans: I’m Paul Evans, and in this edition of Airing Pain I’ll be looking at the key relationship between patient and medical professional. And the key point is communication. For those of us with chronic pain, if we can’t convey how the pain is affecting our lives, then the practitioner can’t help. It leads to frustration, anger, depression – all things that make the pain worse. So in this program I’ll be getting advice from patients and professionals on how to get the best from that relationship. Firstly let’s listen to an example of a consultation performed by actors. You see if it rings any bells.

GP: Is the pain in your back?

Patient: Yeah.

GP: Is it going down your leg?

Patient: No.

GP: Good, that sounds like straightforward mechanical back pain. Are you getting out of the house much?

Patient: Well, yeah, but… it’s not the same.

GP: Are you taking any pain drugs?

Patient: Yeah, but they’re no helping as much as they did.

GP: Well, you doing any back exercises?

Patient: Uh, no.

GP: Really? [sigh] Well, you should be, so, here’s a wee something with these exercises on them. If it doesn’t get any better, why don’t you come back and see me, okay?

Evans: Now you judge for yourself whether you thought that consultation went well or not. It was an extract from Chronic Pain Communication Skills, a training DVD resource for health professionals primarily in pain management. And it was produced by members of Glasgow’s New Victoria Hospital Pain Clinic and is presented by Drs Peter Mackenzie and David Craig. Now, my thought is that clinicians are highly educated people; they’ve been through years and years of training, so why on earth should they need to be taught how to communicate? I put this question to psychologist Dr David Craig.

David Craig: I think that it’s the usual suspects. Sometimes we need communication skills. It’s having the time to listen, but I think that even when clinicians do have that time, it’s perhaps doing little bit more to convey to the patient that they are listening. I think we’re all used to listening, shall we say, to friends and colleagues without necessarily properly listening or conveying to that individual that we are actually listening.

Evans: So I come through your doors as a patient. Your computer screen and your computer keyboard are there. I come in. You’re sitting at your keyboard. You say, ‘take a seat, Mr Evans.’ You don’t look around, and you say, without looking up, ‘Now, what can I do for you, Mr Evans?’

Craig: I mean, you give a good example there of the sorts of things that we’re trying to do and they’re not just about the verbal aspect of communication, but making sure that the basics are in place as the patient comes in to a consultation. And it’s the usual suspects, the obvious things, such as engaging the patient with eye contact, but also perhaps more subtle things about conveying what psychologists sometimes call a curious interest; but also a degree of genuineness and warmth, which is not always easy to do, doesn’t always come naturally to some clinicians. But I think that even before we open our mouth as clinicians, the ability to convey that with nonverbal communication is obviously very important.

Evans: So going through my scenario now, I could tell you how I think you should have changed it. They may not be practical things to do. Well, the first thing I would say would be to get rid of that computer screen. Stand up when I come into a room. Be friendly. And, actually, try not to be professional. Does any of that ring a bell?

Craig: I think so. Although I think when we talk about those sorts of issues, there’s a danger of losing clinicians when we’re talking about a sort of a training program. And I think, particularly with psychology, we run the risk of forgetting the clinician’s point-of-view here. Well, of course, we’re desperately keen to make sure that the patient’s viewpoint is communicated well. When we’re thinking about training packages, they’re only going to be helpful if they appear to be valid to the clinician. So while I think your example of standing up, and the idea of being less (sort of) professional in terms of being stiff, shall we say, in presentation – probably very important. I think on the other side we have to recognize that patients themselves very often wish a degree of, or a sense of, the clinician being professional and knowing what they’re doing in that, and no more so than in pain management. And I think with so much of the conversation to do with communication skills, it’s about getting a balance.

Evans: David Craig. Now I assume that we all agree that the scenario acted out earlier was not effective. So let’s hear how effective it could have been.

GP: I’d really like to get a sense of how you experience your pain. How would you describe it?

Patient: Well, most of the time, it’s in my back. It’s like a burning and gripping feeling. It feels very tight, like something’s going to break at any minute.

GP: Can you tell me anymore?

Patient: Well, it’s really hard, because some days the pain’s really, really bad and other days I can deal with it. It just really hits you sometimes and I never get any warning. I can’t even plan to do things, because the next day, I could be laid up in bed. It’s like it decides how bad I’m going to feel. And on the good days, it’s still there but I can get so much more done that I get to hoping that it’ll stay like that. And then the next day, I’m on my back again. Just seems so unfair. And then I start to wonder if I’m doing it to myself.

GP: Hmm. It’s really frustrating. And how are you left feeling when you think that maybe you’ve done something to your back?

Craig: There are a number of different strands to the communication skills project at the moment. The first thing is for us to properly evaluate it and what we’re aiming to do is to have a few of the doctors involved in a package that doesn’t just include the DVD, but also includes us actually videoing some of the sessions and providing some informal feedback to the clinicians based on what they’ve learned in the DVD, but also just from our own experiences so that it becomes a little bit more valid and real to them. One of the difficulties that we sometimes find with sort of standalone training packages is that they don’t always transfer readily into the sorts of habits that people develop in their day-to-day clinics.

Evans: That’s right. I’ve been seeing a video of yourself in a consultation.

Craig: Yes.

Evans: It can be quite sobering.

Craig: Absolutely, and I think that that’s hopefully where it’s going to show its effectiveness – not so much actually in the DVD but in being able to see there as a clinician some of the things that you’re doing very well, as I said, and to get some reinforcement, all of what you’re doing, which can be valuable in its own right; but also seeing the way that they are in the session – they might have done things a little bit differently. And I think bringing it home like that is probably more powerful than just simply watching the video itself.

Evans: David Craig of New Victoria Hospital, Glasgow. And their training DVD, Chronic Pain Communication Skills, is available from the pain clinic itself or I’d recommend that you download it from numerous sites on the Internet. Just type ‘Chronic Pain Communication Skills’ into your search engine. I’ve even found it available from my mobile phone.

Now, let me just remind you that whilst we believe the information and opinions on Airing Pain are accurate based on the best judgments available, you should always consult your health professional on any matter relating to your health and well-being. He or she is the only person who knows you and your circumstances and, therefore, the appropriate action to take on your behalf.

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So we’ve heard the doctor’s viewpoint on how best to manage a consultation, but what happens when that communication breaks down? Marion Beatson has lived with chronic pain since having a work place accident some ten years ago.

Beatson: Well, I was angry at the fact that nobody was willing to help me and the fact that I didn’t know where to turn. Had I had the information at hand, I would have known to go to my doctor and say, ‘This is not good enough. I want a second opinion and I want answers.’ But you’re frightened to actually go and say to doctors, ‘No, you’re wrong,’ whereas we should be more open to say to the doctor, ‘I’m not happy with what you’ve told me.’ If they don’t have the answers, it’s them having the ability to find the answers and where to tell us to go to get them and that’s the big issue: the patients finding out where to go next.

Evans: So are you still a shrinking violet when it comes to speaking with doctors?

Beatson: No.

Evans: How do you speak to them?

Beatson: I write down what I want to say first. And if I’m not happy, I’ll tell them I’m not happy. And I actually tell them what I want rather than them telling me what they want. It’s taken eight years, but each of the doctors in my local surgery now know me and know that I walk in coming in with what I want to say. They don’t get to talk until I’m finished. And then they’ll say, ‘Great! Well, let’s look at what’s been happening.’ And I’ll say, ‘Right, okay.’ So I’m in control of what happens in my doctor’s surgery.

Evans: So when your appointment comes up on their appointment book, they know they’ve seen you, do they take a day’s leave to avoid you or do they welcome you?

Beatson: No, no, because they know I’m there to help myself and I’m not aggressive. I’m not. I just want to speak to you, I’ll speak to them like how I’m speaking to yourself and I’ll say, ‘this is what’s been happening, and what’s wrong? What is going on?’ And they know that I’ll take my medication sensibly. But if it’s a new doctor, that’s where I’ll say, ‘Who am I seeing? What doctor is it I’m seeing?’ And I’ll say, ‘Well, no, I’d rather have another doctor that is used to seeing me.’ And that is what I’ll usually do if I can’t get my own specialist doctor in the surgery, whereas he knows my case inside out. But I will make appointments for him most of the time, and I’ll wait for the appointment.

Evans: He knows you, and you know him.

Beatson: Yes, he knows when I come in that everything is going to be, ‘Alright, okay. Okay, Mary. Right, then. We’ll try this first, and if that doesn’t work, we’ll then put you to the pain clinic.’ And that’s what happened.

****

Evans: That’s Mark Ritchie who’s a GP in Swansea with a special interest in pain management. He’s clinical lead for Abertawe Bro Morgannwg Community Pain Service in South Wales. I put to him that many Airing Pain listeners feel let down by their GPs.

Ritchie: I think that to a large extent they may well be right and it’s not because general practitioners have done anything wrong. It’s because up until very recently, there’s been no undergraduate training in chronic pain at all. The principles of managing pain are still based on the World Health Organization’s pain ladder, which starts with simple analgesia and works up to opiates like morphine. Either, when you look at where that ladder came from, it came from trauma and acute injury, battlefield-type things or motor accidents, etc.

It didn’t come from a person having chronic, unremitting, ongoing pain. And the problem with that is that when we talk about pain, we talk about simple pain pathways from periphery to the brain and we follow this down the line: use this drug at this point, use drug number 2 at that point, and use drug number 3 at another point. And that’ll solve the pain. What we’re not accepting at that stage is the multiplicity of causes and cause and effect that goes on between the periphery and the brain, in other words, how the pain is modified, etc. And, therefore, the average general practitioner has not had the benefit of appropriate training in dealing with chronic pain.

Evans: When I come to a GP on my first appointment because I feel I’m suffering pain and this that and the other… the GP will go through a step process. He has this, so we do that. That didn’t work; we will do this.

Ritchie: The pathway I might follow, given that you’ve now come in and you’ve got pain in your hip or something: take a history first, then I’d examine you and I’d have a look at where that pain’s coming from and I would try to come up with a diagnosis. If that diagnosis is something that is imminently treatable, with drugs or with physiotherapy or with exercise, then obviously, those are the pathways we could go down. But often in the case of a chronic pain situation, you can isolate where the original injury might have been, but you are now long past the time of repair and yet the person still has pain. The pain is real. It is a real pain that has been generated, but it’s not been generated from a current injury. It’s been generated by a cascade, maybe called the electrical impulse cascade, which is continuing sending these signals by neurotransmitters to the brain.

And the brain is then interpreting that as a current injury or a current problem. In actual effect, the problem might have been over a year ago, two years ago, five years ago. But the cascade is still functioning, so it’s still sending the impulses down that pathway. And this is the difficult part, because a fundamental, basic, primitive brain associates pain with danger. And therefore, the fact that you’re now receiving pain, the body worries about this; the brain worries about this and says, ‘I’ve got to do something. I’ve got to pull away from this. I’ve got to protect myself…’ so as to protect its function.

Evans: So the systems, they are in place and working but actually working against themselves.

Ritchie: In a way, yes, and modifying them incorrectly. If we can divide the pain pathway from the periphery to the brain into sort of three or four sections, the first section is from any point on your body, the peripheral point of the body, to the spinal cord, which an area called the dorsal root ganglia. It’s not important, but it’s in the spinal cord. From there, you then have a pathway up to the brain and various different modification areas within the brain. And you have a pathway down again, to wherever it entered the spinal cord, and then out to the periphery. So you’ve got these different segments, spots, and anywhere along there, firstly, the pain can be added to, modified, both up and down, so there are modifications within the area that will decrease pain. And there are modifications there that can increase pain. So the problem is how do we turn these on and off? And these can be turned on and off by a whole host of things.

So for instance, you take somebody who’s depressed. They have lost a loved one. They will feel more pain than somebody who is not depressed. Does that mean they’re making it up? Definitely not. It simply means that because they’re depressed, they could be suppressing or adding hormones into the system. Actual enzymes. They can turn them on or turn them off. And by those enzymes then not being available, they can then maybe reduce the pain or they might actually be adding to the pain, exacerbating the pain, simply by what enzymes or hormones are currently being produced.

You produce natural painkillers. You produce things called endorphins and cephalins. These things you produce when you go for a jog; when you actually work up a sweat, you produce these natural painkillers. And with the word ‘endorphin’, if you knock off the first few letters and put an ‘m’ in the front, you’ve got ‘morphine’ or morphines. These are morphine-type or opiate-type enzymes. Your body makes them. But it doesn’t make them to the same extent when you’re depressed as to when you’re in a happy mood. So it’s a case of simple things, like mood can now modify the whole pain from top to bottom.

****

Beatson: Towards the end of 2008 they realized that I actually had psychological problems as well, and they referred me to a psychologist. And it was the psychologist that actually helped me more than anybody else. Because he made me realize that, to stop feeling guilty about everything that’s happened and that it wasn’t my fault. Because a lot of patients think it’s their fault and it’s not their fault. And stop feeling guilty.

Evans: So how did he do that?

Beatson: He let me talk. He just sat and listened. And I told him things that I didn’t even remember, from when I was young right through to the accident and the way I was treated after the accident. He said because I never got closure, that’s what was making me so angry. And that nobody would pay attention to me; that it was there from the first doctor that treated me.

I had so much anger for this doctor that I didn’t realize until I actually told him about it. But it was the way I told him about it. My whole personality changed. I didn’t notice, but he picked this up. And it was him that told me, that the fact is that, ‘Oh, you’re an angry young lady!’ And I was like, ‘No, I’m not.’ He says, ‘Oh, yes, you are.’ And I’m like, ‘No, you’re right.’

And he let me get off my chest what I wanted to say. He says, ‘Right, if I was the doctor, what would you say to me?’ He says, ‘Without hitting me,’ he says, ‘tell me what you want.’ And he just let me go for it.

Things like that made the big difference because you don’t tell anybody in the family how you feel, and you don’t tell any friends how you feel. So this is all bottled up inside you and you don’t realize.

****

Ritchie: Two years ago at the British Pain Society there was a Professor Jane from the United States, and he’s actually a psychologist or psychiatrist. He did a whole lecture on how pain and depression and anxiety interact. He basically said if you take somebody who has pain but they’re not depressed and they’re not anxious, the chance of that becoming chronic pain is a lot lower than if the same person has the anxiety and depression.

He described this by adding these different components together as being cataclysmic: if you have depression and pain, you’re more likely to go down the line of chronic pain. If you have anxiety and pain, you’re more likely to go down the line of chronic pain. And what’s interesting is which came first. Is the pain causing the depression, or did the depression lead to an exacerbation of the pain? And that’s, of course, the million dollar question. As to the outcome, it doesn’t really matter from the treatment point of view. From the treatment point of view, we need to recognize the fact that this person is a person as a whole, not just this one piece. Therefore, we need to treat all these elements, not just the pain.

Evans: …which brings us back to where we started, in the GP’s consultation. Now you see a patient at the very beginning, or at least, perhaps not the beginning of the pain, but at the start of them recognizing that they need help. Quite often, the real help doesn’t come until the very end of the chain. How could you as a GP nip that circle of pain and depression in the bud at the very beginning?

Ritchie: Certainly, the largest area of illness in the country at the moment is actually depression. And depressive illnesses are highlighted now through many areas of QOF – the Quality and Outcomes Framework – and so on. We are looking for depression a lot sooner than we used to, and there are certain screening questions that you tend to ask every patient, not just those who come to you with pain.

So for instance, under the diabetic heading now, you also end up asking people about depression. And the reason I’m going to speak to diabetes just for a second is not because it’s directly linked to pain, but because it’s another chronic disease. It’s funny how chronic diseases lead to depression. So a person with chronic asthma, chronic ischemic heart disease, chronic diabetes… they are the ones who seem to also end up depressed. And pain is no different. People with chronic pain end up depressed. So firstly, we need to look for it sooner. That we’re already doing, so that’s some really good points that I think has come out of the Quality and Outcomes Framework.

As to how quickly we can move down the pathway, a lot of this does come down to recognition. And certainly longer time in front of the doctor would be nice. I don’t know how the government would budget for that, but it certainly would be nice to have longer appointment times. Sometimes there is a case of having to bring them back for three or four evaluations to truly get to where you’re going, because not everything is necessarily as it seems when the person walked through the door.

So the reason for encounter needs to be extracted and people who have depression; people who have chronic pain; people who have a chronic condition, don’t always tell you everything in that first encounter. There is a case of evaluating initially, listening carefully, moving through to extracting more facts by surreptitious questioning, shall we put it that way, or around-the-point questioning to see whether there’s more to the picture than just what the person is initially telling you. But another part of it is the patient can actually prepare for this. The patient can actually take 5 or 10 minutes of their time before they come and see the doctor and write down, if necessary – if they have 50 problems – write them all down. But then divide them into ones that really are affecting their lives right now.

And realizing that we’re going to need to answer them one at a time, we’re going to need to move through the list. The classic example, which we have in general practice, is the group of patients whom we refer to as heart-sink patients. They come in, and they say to you, ‘I’ve got a pain in my leg.’ And you’re still answering them on that and they say, ‘Well, I’ve also got a pain in my thigh.’ And before you could even answer that, they’ve decided they are depressed. And before you give them an answer to that, they move on to the next: ‘And while I’m here, Doc…’ By the time you’ve finished, you haven’t answered anything because they haven’t given you the chance to. Now whether it’s because they don’t want to get better, whether it’s because they are frustrated by all these problems and don’t know where to start, or whether it’s the fact that they haven’t actually got them in any order of importance is difficult to ascertain from that sort of consult. But that patient gets nothing out of the consult.

Evans: Or it may be none of those problems.

Ritchie: Correct. It may be none of those at all and it might be something underlying. All I’m saying is, if the patient – just as the doctor prepares by having studied and learned different medications, different treatment strategies, just as he’s done that preparation, the patient needs to spend 5 or 10 minutes preparing what they’re going to say to the doctor.

Evans: So that’s the advice: prepare for your appointment.

Ritchie: Absolutely.

Evans: Write a list of what you want out of the appointment and write down what is worrying you.

Ritchie: Absolutely. In other words, get your ideas into some form of order. Having said this, this isn’t going to apply to every single appointment: a person who is depressed, for instance, there’s no way they’re going to prepare in the same way. But then they’re going to come in saying they’re down, they’ve got no energy, nothing’s going right and they don’t want to do anything. That already paints a picture for me. It shows me that now I need to explore that a little bit. So that’s slightly different.

But the person who’s been in pain for 20 years, they usually know that they’ve been in pain for 20 years. And they know that they would like to get on top of this. They often don’t understand why they’ve got pain. They have fears. Tell me what your fears are: ‘I’ve had back pain for 20 years. Have I got cancer underlying that?’ It’s important because if I don’t know that’s worrying them, I can’t address it. And if I do know it’s worrying them, I can address it, so that I can get it out of the way in probably seconds. A quick examination, a clear explanation of why this wart isn’t cancer in this particular case and now we can move on to the rest of it.

So fears are just as important. I can describe how they should prepare really in ideas, concerns and expectations: what their ideas are that are going on, what their concerns are, what they expect to get out of their appointment. The mnemonic ‘ICE’. And they could actually use that to set out what they want to bring to the doctor.

Evans: Dr Mark Ritchie, and that memory aid for preparing for your appointment once again, ICE. I-C-E: ideas, concerns and expectation.

This is Airing Pain. So as we’ve heard, patients and doctors can have a fruitful relationship when both parties are able to communicate. Ron Parsons and Michael Morrison are from the Aberdeen area. Ron Parsons first:

Parsons: I’m of the age where as a young person, I went to the doctor and listened to every word he said. Didn’t dare argue with him. Took the pills and went back to see him again if necessary.

Evans: Doctor knows best.

Parsons: Oh, yes. Oh, yes. That’s what it was like when I was a schoolchild. It has only been, I would say, in the past 15 years or so that that has begun to change. Doctors are expecting to have comment from their patients, discussion with their patients. And when I do that, I get so much more out of a consultation.

Evans: So tell me, how do you speak to a doctor?

Parsons: I’ll be a little pushy at times if I’m not being listened to, so I’ll demand that. But I’ve got to remember that I have no medical training at all. I’m just a layperson. He is the medical expert. Sometimes people will say to me, ‘No, but you’re an expert in your own condition,’ and such like. Nevertheless, he is the guy in the best position to treat me, so I will take his advice. If I don’t agree with his advice, I’ll ask if I can discuss it a little further by taking that sort of approach with him. I’ve seen a number of GPs over the years. I’ve never had any difficulty in speaking to somebody.

Evans: And that’s because you’re going to your GP surgery prepared?

Parsons: Yes, I do. I always go to my doctor with a list. There is never just one thing that I want to talk to him about. There can be half a dozen. And I’ll say to him at the outset: ‘There’s my list. That’s what I want to go through today. If you have time, let’s have a go at it.’

Morrison: One thing that changed was when the patient was able to get hold of his records and see what the doctor was writing about him in his medical papers. I think that’s when the patient-doctor connection changed. Personally, anyway, when I go in to see the doctor, the doctor is the medical man. He knows about the drugs, etc. I’m the one that knows about my pain, how it’s affected me, how I think it should carry on from here, if we need to change drugs or increase or whatever.

But I’m the expert in my pain and every time I see the doctor, we normally have a good chin flap about what’s happening now, and what should happen next: ‘Right, do this for the next four or five weeks and come back and see me.’

Evans: Michael Morrison and, before him, Ron Parsons.

And that’s the end of this edition of Airing Pain. You can download this and all the previous editions from our website at painconcern.org.uk – and if you’d like to put a question to our panel of experts or just make a comment about the program, then please do so via our blog, message board, email, Facebook, or even pen and paper. And you can find all the contact details at our website.

I’ll leave the final words to Marion Beatson:

Beatson: Please don’t suffer alone. There are people out there that feel the same way as you do. Even if you’re phoning your local voluntary centre: Pain Concern is the one I contacted. And I’ve heard back and constantly phone them and they tell you the information that you need to know. So please don’t suffer. Don’t sit there suffering alone. Do something about it.

Contributors:

Dr David Craig, Chronic Pain Communication Skills
Dr Mark Ritchie, Depression and chronic pain
Marion Beatson, Speaking to a psychologist
Ron Marsh, Relationship with health professionals
Michael Morrison, Relationship with health professionals.

Better communication for doctors and patients and how to make the most of medical appointments

Communication is fundamental to the relationship between patient and healthcare professional. In this programme Airing Pain looks at this issue from both the patient and doctor’s point of view. Psychologist David Craig of Glasgow comments on his communication skills training DVD for chronic pain professionals. GP Mark Ritchie explains how depression and chronic pain can be linked, and gives advice on how patients can prepare for medical consultations, using the memory aid: Ideas, Concerns, and Expectations. And finally, we hear from a number of patients about how they effectively broke down any communications barriers with health professionals in order to gain the most that they could from their consultations.

Contributors:

Dr David Craig, Chronic Pain Communication Skills
Dr Mark Ritchie, Depression and chronic pain
Marion Beatson, Speaking to a psychologist
Ron Marsh, Relationship with health professionals
Michael Morrison, Relationship with health professionals.

What is a spinal cord stimulator and could it help you to manage your pain? Plus, complex regional pain syndrome, mirror therapy for phantom limbs, and how chronic pain affects and is affected by sleep

To listen to this programme, please click here.

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Paul Evans meets Edith Mowatt who has nerve root pain and hears how she has learned to manage her condition and about her experience of spinal cord stimulation. We hear a doctor’s view on these machines from Dr Steve Gilbert, and how they can also be used to treat complex regional pain syndrome. Dr Candy McCabe tells us more about this condition, as well as the use of mirrors in therapy for phantom limb pains.

Finally, Professor Mark Blagrove and Dr Nicole Tang explain how pain affects sleep, and how a good night’s rest with the help of cognitive behavioural therapy can ease pain symptoms.

Issues covered in this programme include: CPRS, complex regional pain syndrome, nerve root pain, insomnia, phantom limb pain, mirror therapy, CBT, cognitive behavioural therapy, NRS, non-recuperative sleep, sciatica, spinal cord stimulator, fracture pain and visualisation.

Paul Evans: Hello and welcome to Airing Pain, a programme brought to you by Pain Concern. A UK Charity that provides information and support for those of us who live with pain. Pain Concern was awarded first prize in the 2009 NAP Awards in Chronic Pain and, with additional funding from the Big Lottery Fund’s Awards For All programme and the Voluntary Action Fund community chest, this has enabled us to make these programmes.

I’m Paul Evans and in today’s programme:

Mark Blagrove: It is starting to be realised that insomnia can have, not just have the inability to fall asleep, the impossibility of being asleep, but what is called ‘NRS’ or ‘Non Recuperative Sleep’. So people can be asleep, but it not do them very much good.

Edith Mowatt: It kind of colours your whole life but you begin to learn to control it and not let it control you.

Candy McCabe: It sounds very strange to talk about mirrors in relation to a pain that is so great that it can’t be relieved by some traditional painkillers and that seems somewhat bizarre and wacky.

Evans: More on those subjects later. But we will start with one person’s story of how she copes with chronic pain. Edith Mowatt has nerve root pain and that is where the root of the nerve coming out from the spinal cord is irritated, pressed on or damaged. And those with it feel the pain along the course of that nerve, say, down the leg, even as far as the foot where the pain is often worse than at its root in the back. Some people know this as ‘sciatica’, but it can range in severity from mild or as in Edith Mowatt’s case, excruciating.

Mowatt: If I could describe it in a sound, it would be like a continuous high-pitched scream which radiated from the base of my spine right down to my feet. I fell at home, I fell over my own feet and twisted as I fell, damaging the discs in my spine. I was an officer in charge of a home for the elderly at the time and I worked on with it for about four months until I realised that there was something seriously wrong. I saw my GP and I was in the hospital the next day and that was the end of my career.

Evans: We’ll hear more about how Edith copes with her nerve root pain at the end of this programme. But you will know by now that one of our aims on Airing Pain is to put questions you’ve raised with us to our panel of experts. One listener has asked, ‘What’s a spinal cord stimulator? How can it help people in pain and can you get one on the NHS [National Health Service]?’ Well having being fitted with one of these devices, Edith is in the perfect position to explain the patients’ viewpoint and following her, Dr Steve Gilbert of Queen Margaret Hospital in Fife will explain more.

Mowatt: A Spinal Stimulator is a machine a bit like a TENS machine, except it’s implanted in me. The electrodes go either side of my spinal cord and the machine is just by my side where I have access and I switch myself on and off. It is easy to work but it takes a long time to get used to it.

Steve Gilbert: A spinal cord stimulator is a machine that is a bit like a pacemaker which delivers an electrical current to the back of the spinal cord. You’ve probably heard of a TENS machine which is an electrical stimulator, where you stick pads on the skin over the painful areas, sometimes your back or your shoulder or your knee, and it interferes with the pain transmission by activating the pain gate. That means it’s using the same nerves, sending messages in and mucking up the pain transmission at the spinal cord level, so that you feel less pain.

The spinal cord stimulator works in a slightly different way – we are not really exactly sure what the underlying mechanism is – but we have found that, by delivering a low current to the back of the spinal cord, which is where the nerves all come down inside your spine (so it has to be inserted through a needle or a small operation into that area) – it can give you pins and needles or a numb sensation in the area where you would feel the pain. It doesn’t make the feeling go back to normal, it replaces the painful sensation with the pins and needles or this, what we call, ‘para-seizure sensation’.

It has been found to be really helpful for some people with persistent nerve pain and some people also with complex regional pain syndrome, which is where everything becomes very sensitive in a hand or a foot. It’s also been found to be helpful for some conditions, such as angina, where you have pain coming from the blood vessels around your heart, but they can’t do an operation that can improve the blood supply. And the interesting thing about the spinal cord stimulator is that actually it does increase the supply of blood and oxygen delivery into the tissues.

Now, spinal cord stimulators are only done in specialist centres and so you have to ask your doctor can I be referred for assessment for a spinal cord stimulator. Often the doctor you will see, even if they are in a specialist pain clinic, might not have experience themselves of spinal cord stimulators and might not know whether it’s exactly the right thing for you. This is possible on the NHS and it is a slightly complicated route that you have to go through to get the funding for it. Now the spinal cord stimulation is really quite an expensive treatment but I don’t think that this should necessarily stop us exploring this as an avenue of treatment if it’s going to significantly improve your pain and quality of life. But I’ve got to emphasise that there are only a few people that will actually benefit from a spinal cord stimulator.

Evans: Dr Steve Gilbert of Queen Margaret Hospital in Fife.

And please do send us your questions via any of the usual routes which you can find at our website which is painconcern.org.uk. But let me just remind you 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.

Dr Steve Gilbert mentioned complex regional pain syndrome – now this is a condition that we know very little about and seem to be poor at diagnosing. But we do know what improves the symptoms and what makes them worse. Candy McCabe is Professor in Nursing and Pain Sciences at the University of West England. She’s also a consultant nurse.

Candy McCabe: The most common way that people are first aware of complex regional pain syndrome is if they have a fairly simple fracture, like a fracture of a wrist, and the first thing that they tend to be aware of is that the pain is utterly different to any sort of pain that they have ever had before. It seems more than you would expect for a fracture, even though you’ve never had a fracture, people commonly report that they’re very surprised by the level of pain.

The other first common presentation is that if they’re wearing a plaster cast for that fracture, they feel as if that plaster cast is far too tight and they’re constantly going back to the doctor saying, ‘My arm is swollen. The cast is too tight. I need the cast changing.’ And, in fact, when it’s looked at by the doctor, by the plaster technician, they can see that it’s a perfect fit and there’s no problem with it.

Then, six weeks later when the plaster cast is removed patients may be shocked to find that they have a very discoloured looking limb. Now it’s common after a plaster cast coming off that the limb looks a bit different, but with CRPS people find that the limb may look very blue or red; they may feel like it’s very hot or intensely cold; they may find that the skin is very shiny, sweaty and there could be a dramatic increase in the hair growth that’s on that limb so they may find actually that they’ve got very thick black hair growing on that limb and their nails have grown phenomenally. The limb is commonly swollen and, again, it’s the pain that is the biggest problem to people with this condition. They don’t want to touch the limb, they don’t want anybody else to touch it and quite quickly they feel that the limb doesn’t belong to them and commonly, within a matter of days or even weeks, they feel like they would like that limb cut off. It feels alien to them – they don’t wish to be connected to that limb any longer.

We don’t really know what causes it, but most commonly people will present following a fracture or a number of repeat surgical interventions into a limb. The other thing that can trigger it is prolonged casting, so if people have had complex surgery that’s required them to be in a cast for a number of months, then that can be a risk factor for developing CRPS. But also you can just wake up in the morning and have spontaneous onset symptoms in the limb which is even more confusing because you’re desperately trying to think of what caused it, how did it happen and there may be no obvious trigger at all. But the most common things are trauma, surgery and prolonged plaster casting.

There are three approaches to the treatment. The first is to deal somehow with that pain, so you would be given a range of different medications to help relieve that pain. And that may range from very simple painkillers up to more complex pain relievers depending on your level of pain. The next arm in these three treatments is to have some psychological support, because it’s very distressing. Pain of any sort can impact on your life, it affects your family, your job, so some psychological support is really important.

But the primary treatment and the one that is there that is supported by these other two is physical rehabilitation. And that is the most important thing to start as early as possible. So patients should use that limb as much as they can despite the fact that they don’t want to. Despite the fact they feel the pain is so great that they need to protect it. Actually, what they need to do is use it little and often. Touch it a lot – get the brain to recognise that limb again as their own.

Evans: Now, a brain that does not recognise a limb of its own is a strange concept to grasp. But some amputees experience a similar but opposite feeling of a limb that was there but is no longer, the so called ‘phantom limb’. A treatment to correct this involves the use of mirrors and Candy McCabe has been experimenting with a similar technique for the treatment of complex regional pain syndrome.

McCabe: It sounds very strange to talk about mirrors in relation to a pain that is so great that it can’t be relieved by some traditional painkillers and that seems somewhat bizarre and wacky. But actually mirrors have been shown to be very useful in relieving amputee phantom limb pain by tricking the brain into apparently seeing that the patient has got their limb back again. And we think what happens in phantom limb pain is that the mechanism that drives the pain is a mismatch between what the brain is expecting to see in that limb and the information that its getting back from the limb. So by giving somebody a mirror to look in where they are tricked into seeing two normal limbs again – it gives the brain back what it wants to see.

And with complex regional pain syndrome we think a very similar mechanism is happening – that because you have reduced or changed information coming back from the painful limb, the brain doesn’t recognise it as it should do; it struggles to plan movements through that limb and, because there’s a mismatch between what the brain expects to see and the information coming back, it has to develop some sensations to tell you that there’s a problem. The sensations that it develops is this unpleasant pain, these sensory changes.

So the mirror is there to give good sensory feedback – good information back to the brain about what that limb actually looks like, the fact that that limb can move. So patients will position a limb on the centre of their bodies so they are able to look at a reflected image of the unaffected limb – look in the mirror and low and behold they have two normal looking limbs just by looking at the reflection of the unaffected limb. And then you would be asked to move both limbs simultaneously while looking at this reflected image that is superimposed on the area of your affected limb. And by doing this little and often we can start to reprogram the brain so that it recognises a more normal limb and therefore no longer has to send out these alert mechanisms to tell you that there is a painful limb and your pain improves, movement improves and the condition starts to resolve.

But what I would stress is that this isn’t a cure in its own right – it’s very important that you use the three treatment paradigms in CRPS, so you have medication, psychological support, and physical rehabilitation. The mirror is another tool in the trick box – it’s another tool in your armoury to help correct the brain pathways, correct the messages and so we would never use a mirror all on its own without these other treatments but what we have found is that people with very early symptoms – it can provide instant pain relief as they look in the mirror – you remove the mirror and the pain returns. So we ask people to do it little and often – five or six times a day – no more than five minutes at a time so that they can concentrate.

For those people further down in the treatment who may have had this condition for one year, three years – we find that it’s perhaps not as effective but this varies between individuals. It’s also really important that you’re assessed first of all by somebody who has been trained in this technique, because it can increase your pain if not used correctly. Training more people into mirror image feedback would be very helpful but I think much more importantly is training people in recognising the early symptoms of complex regional pain syndrome. If people understand better the mechanisms that drive this condition, identify it more quickly, we can treat people more quickly and therefore we would have fewer people going on to get the chronic symptoms.

Evans: Candy McCabe, Professor in Nursing and Pain Sciences at the University of West England. This is Airing Pain with me, Paul Evans.

Now, poor ineffectual sleep and chronic pain go hand in hand. Yet sleep is one of our basic needs. So what is sleep? Mark Blagrove is Professor of Psychology at Swansea University.

Mark Blagrove: Sleep is a period when you are usually very still during the night and for mammals, including humans, it is made up of different stages: light sleep, which is stages 1 and 2 and then deep sleep which is stage 3 and then there is also a rapid eye movement sleep which occurs every 90 minutes. We are not sure why there are these different stages and in fact they are quite intricately arranged so that you alternate between deep sleep and REM sleep throughout the night with deep sleep predominating in the first half of the night. REM sleep predominating in the second half of the night and having light sleep between each instance of deep and REM sleep, so it’s actually very complicated.

Evans: What do you mean by REM sleep?

Blagrove: REM sleep is Rapid Eye Movement sleep in which the brain looks like, has many of the characteristics of being awake and has as many brainwaves that look as if you are awake but you are in fact completely asleep and your eyes are moving backwards and forwards quite frequently.

Evans: Do the different stages of sleep, do they have different functions throughout the night?

Blagrove: They might do – no one’s quite sure yet, deep sleep may be involved in maintaining our warm bloodedness. Deep sleep and stage 2 sleep and REM sleep may all be involved in consolidating different types of memory and there’s the possibility that we have other hormone or neurotransmitter functions going on – resetting them, for example, which are tied to different parts of the night. So it could be a whole lot of different functions for the different stages.

Evans: Is there a relationship between sleep and pain disorders?

Blagrove: There is a relationship between sleep and some pain disorders. What can happen is that they can both interact with each other, so obviously the pain can cause people to have a worse sleep. So especially the deep sleep and the REM sleep can become diminished and you will be left with light sleep which is less recuperative and so the pain can affect your sleep. There is the possibility also of sleep affecting pain. One possibility is that people seem to be more sensitive to pain if they have not had enough sleep and so you can do standard pain tests on people, for example, by putting their hands in very cold ice water, which is absolutely terrible, and if people have been deprived of sleep, then the pain feels far worse. So that’s one way in which sleep can affect pain.

Evans: Let me just describe the sleep I had last night and I have most nights and which many people get. I feel that I’ve been awake in the night, I’ve obviously had a full night’s sleep because my wife has told me that I’ve been snoring, but I’ve woken up and I don’t feel rested or healed in any way.

Blagrove: Yes, it is starting to be realised that insomnia can have, not just have the inability to fall asleep but the possibility of being asleep but what is called ‘NRS’ or ‘non-recuperative sleep’. So people can be asleep but it not do them very much good. Now one possibility there is if you’ve had the lightest stages of sleep and just those and you haven’t gone into deep and REM sleep, you may have well have been asleep all night and you may just wake up and feel extremely fatigued because the sleep has just been of the light type.

Now, although we are not quite sure about what it is that light sleep and what it is that deep sleep and REM sleep all do for us, it does seem to be that if you have a night full of light sleep, then people feel much worse than if they had the other two types of sleep with it. So, although we don’t know what deep sleep and REM sleep do for us, if we lack them and just have light sleep, people can feel the difference.

Evans: That’s Mark Blagrove, Professor of Psychology at Swansea University. So what proportion of people with chronic pain do experience sleep problems. Dr Nicole Tang is a research fellow at the Institute of Psychiatry.

Nicole Tang: Usually you will hear percentages, like 90% of the people who go to a pain clinic to seek help they will report some kind of sleep problem. One of my studies… we have used a standardised insomnia scale to check the prevalence and severity of clinical insomnia in that population. We found that actually, more than half the people going to a pain clinic will suffer from some kind of clinical insomnia of either moderate or severe level.

When you have insomnia and chronic pain, it really messes up the problem quite a lot because when you have the pain, the first thing that you want to do is to perhaps not think about the pain and when you been having it all day, you really just want to have a time when you don’t feel the pain, when you’re not conscious of the pain, so that you can have a respite. So for a lot of people with chronic pain will sometimes use sleep as an escape, but when they’re so desperate to get an escape they actually spend a lot of time in bed and that is not the way to regulate the sleep. So when you’re trying so hard to get to sleep, forget the pain, you’re actually violating some very essential rules – how to get a good night’s sleep – because by extending your time in bed, you’re just increasing your frustration that you are not going to get some sleep because you can’t expect your body to sleep, let’s say, 12 hours a day.

Evans: Now, Nichole Tang uses a number of cognitive behavioural processes in helping people with their sleep problems. You may remember that cognitive behavioural therapy, CBT, helps manage our problems by changing how we think and how we act.

Tang: Sometimes people think that the more sleep I get, the better it will be for my pain. That’s actually not the case. When we’ve been looking into the research findings or the treatment findings, when people are saying, ‘I’m now feeling better’, it’s not necessarily because they’re getting more sleep, but potentially because they’re getting a higher quality of sleep within a shorter period of time.

And the aim of using CBT a lot of the time is not about controlling sleep or controlling pain, it is more about helping people to understand how pain and sleep work and then so that they can find a different perspective of what is going on with them. Because a lot of the time when they have psychological problems it’s mainly stemming from the frustration of not knowing how to control the problem. So to control they’ll use their own strategy. But a lot of the time those strategies are not very well thought out and it is based on a lot of limitations.

So what we help them to do is to take a step back to reconsider their situation so that they can have a broader view to see what the options are. And then when they take a step back being calmer knowing what are the options, then they can act accordingly in an informed way based on what we have been doing in science knowing what works for pain, what works for sleep and that they could try some different strategies. Because if you talk to pain patients or insomnia patients, they feel like they are stuck in a vicious circle. So they don’t know how to get out so in therapy mainly what we do is just to pull them out a little bit and see what they are facing and what are their options for them in terms of treatment and then gently lead them to a way that will help them to maintain their sleep.

And usually the strategies that we suggest to them are very counter intuitive – let’s say you want to have better sleep actually the best way is to not lie in bed for so long trying to get to sleep. When you’re dying to get some sleep perhaps the best way to regulate your sleep, so that your sleep could be consolidated, you will be craving sleep at the right time so that you can control the timing of sleep and you don’t have to wait for hours in bed, tossing and turning and yet sleep doesn’t come.

Evans: So how difficult is it to persuade someone with chronic pain to change the way they think about their sleep. Nicole Tang again.

Tang: It is incredibly difficult to get people to do something that they think is not going to help with sleep. That is why in treatment I usually start with a session of sleep education. So it’s not just about sleep hygiene – giving them the tips, what to do to get a good night’s sleep – it’s actually to help them understand how sleep works. People think that the longer they sleep the better they will feel the next day and in fact it’s not necessarily the case. There is the concept that when we get sufficient sleep for the first few hours of your sleep cycle, it is sufficient to get you going for the next day.

Sleep in a way is like an appetite it’s like eating chocolate, so if you eat too much chocolate there will be a point when you think that I don ‘t need that much chocolate and it will be nicer if I eat less chocolate. So sleep is just the same. So we will have to get people to understand that sleep doesn’t work in such a way that the more you get it the better you feel and to understand that if you try too hard to go to sleep, sleep won’t come. It’s just like a butterfly – if you try to grab it, it will just fly away.

So we help them to do something new, to try something different. So apart from changing the way they think about sleep, we also help them regulate their sleep schedule. So let’s say that the main problem is that they spend too much time in bed, we will help them to set up a new schedule of sleep, so that they will postpone their sleep time and then get up at the same time so that they will save up some of their sleep pressure, if I may say, for the next day. So that the next day by the time when they are about to get to bed they will feel sleepy enough and they will just plunge into sleep faster than they would if they go to bed early.

So we help them to use a new sleep schedule, use a new strategy to deal with midnight awakening because a lot of time when you wake up in the middle of the night because of the pain it could be very frustrating. So we have to help them to focus and thinking of a better way of reacting to these kind of pain related arousal. First of all by not being too frustrated by the fact that you wake up because actually if you look at normal people’s sleep, even the best sleeper on earth, they will have a number of awakenings during the middle of the night. But why don’t they complain about waking up in the middle of the night – is it because a lot of the time they don’t remember they have been woken up for no particular reason? Because also they can fall back to sleep relatively quickly, so those awakenings will not be registered in the memory.

So we’re using tricks like that to help them to perhaps go back to sleep quicker, be more accepting of them awakening – knowing that perhaps it could be a good thing for them, because if you wake up that could give you a chance to adjust your body position so that you can feel more comfortable in bed. So by considering all sorts of different issues surrounding the arousal with the new understanding: why people wake up; what are the consequences of waking up in the middle of the night? what are the consequences if I react badly or frustratingly to the awakening? what will I do next knowing all these consequences?

So we help them to perhaps think of a strategy to get out of the bedroom so they don’t worry in bed and think, ‘what should I do now that I can’t sleep?’ Go to another room, do something boring – knowing for sure that the boring task will help them to fall back to sleep. So that they feel much more in control of what they do with the insomnia and usually within two weeks using this schedule and some new method of helping with their sleep, the sleep will turn out to be quite beautiful and a lot of people that I’ve treated have shown significant improvement to the point that they sleep almost like normal sleepers.

Evans: Dr Nichole Tang of the Institute of Psychiatry. And I would just like to draw your attention to the British Pain Society’s new Special Interest Group for Primary and Community Care. It’s inaugural meeting is happening at BMA House in London on Saturday the 9^th of April 2011 and it will be cheered by Dr Mark Porter M.B. and Chair of the British Pain Society, Professor Richard Langford. And you can get all the details from the British Pain Society website and Airing Pain is planning to feature it in a future edition.

As promised, we will end this session with Edith Mowatt’s experience with living and coping with nerve root pain. But don’t forget that you can still download all the past editions of Airing Pain from our website at painconcern.org.uk. And if you want to put a question to our panel of experts or just make a comment about our programme then please do so via our blog, message board, email, facebook, twitter. Here’s Edith Mowatt:

Mowatt: Initially, it kind of colours your whole life, but you begin to learn to control it and not let it control you. I found that high power drugs like morphine, all they did was addle my brain and seemed to make the pain more acute – they seemed to sharpen it, if that makes any sense. But once you get onto a regime of painkillers that suit you, you begin to be able to control the rest of your life and control the pain with – how would I put it? Not meditation, but you learn to be in a quiet place away from the pain; you learn to put the pain somewhere else. I use a technique of visualisation, in that, I can, even as I speak to you now, that if the pain is really bad, I could take myself on a journey and put the pain somewhere else away from me.

Go to somebody else who is in pain and can help you and teach you the visualisation techniques, as I say – the way to be just in a quiet place and put the pain somewhere else, so as you can get on with your life. I admit that there are still days when the pain controls me and you really won’t want to be around when that’s happening. But the bad days are really vile and the good days are many more than they used to be – many more than they used to be. But you have to be positive; if you’re negative all the time the pain will seem worse, much, much worse! You have to be positive and you have to focus on what you can do and what it’s allowing you to do and go that step further every day. Just take it that step further. You can do it!

Contributors:

Edith Mowatt, Nerve Root Pain
Dr Steve Gilbert, Queen Margaret Hospital, Fife
Professor Candy McCabe, Complex Regional Pain Syndrome, Phantom Limbs and Mirror Therapy
Professor Mark Blagrove, Sleep and Pain
Dr Nicole Tang, CBT and Sleep.

Finally, Professor Mark Blagrove and Dr Nicole Tang explain how pain affects sleep, and how a good night’s rest with the help of cognitive behavioural therapy can ease pain symptoms.

Contributors:

Edith Mowatt, Nerve Root Pain
Dr. Steve Gilbert, Queen Margaret Hospital, Fife
Professor Candy McCabe, Complex Regional Pain Syndrome, Phantom Limbs and Mirror Therapy
Professor Mark Blagrove, Sleep and Pain
Dr Nicole Tang, CBT and Sleep.

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