Pain Concern

How people in remote areas manage pain, and when and how to take opioids

This programme was funded by a grant from Big Lottery Fund, Awards for All (Scotland) and by an educational grant from Pfizer.

In this programme we hear about the challenges facing people with chronic pain in isolated parts of the country and how a pain management programme in the Highlands is helping such patients. Dr Cathy Stannard clears up some of the misunderstandings surrounding opioids and explains when they can and can’t help with chronic pain and the possible side-effects of taking them.

Issues covered in this programme include: Opioids, mobility, remote/rural areas, pacing, multidisciplinary, tele-medicine, telephone consultation, highlands and islands, patient and staff travel, small communities, healthcare network, neuropathic pain, post-surgical pain, cancer, side effects, opioid withdrawal, mindfulness and breathing exercises.

Contributors:

Jackie Milburn. Clinical Nurse Manager, Chronic Pain Service, NHS Highland
Dr John Macleod, Consultant Anaesthetist, NHS Highland
Dr Cathy Stannard, Consultant in Pain Medicine, Frenchay Hospital, North Bristol NHS Trust.

The societal and economic impact of pain and driving pain up the agenda

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Pain has a huge impact not just on individuals but also on society, healthcare systems and the economy. Airing Pain takes a look at how the International Association for the Study of Pain’s Declaration of Montréal and EFIC (the European Federation of International Association for the Study of Pain Chapters) are working to drive pain up the political agenda. We interview experts in healthcare policy and chronic pain treatment as well as patient groups at EFIC’s European Societal Impact of Pain symposium for their views on how the way society and the medical profession respond to pain could be improved.

Issues covered in this programme include: Society, economic impact, policy, unemployment, breakdown of relationships, raising awareness, education, right to healthcare, everyday life, stigma, waiting times, patient voice, scientific progress and medical research.

Paul Evans: Hello, I’m Paul Evans, and welcome to Airing Pain, a programme brought to you by Pain Concern, the UK charity that provides information and support for those of us who live with pain. This edition is supported by an educational grant from Grünenthal.

Gina Plunkett: One of the first things that we all must recognise across Europe is that chronic pain is a very serious healthcare issue.

Mary Baker: I’m sure there will be family breakdowns. There’ll certainly be loss of work; if there’s loss of work, there’s loss of income and, of course, if you’re out of work, you’re on benefits and once you’re on benefits, you become an economic burden.

Plunkett: It is a huge issue, not just in terms of the cost, but it’s incredibly important for people living with pain to be given that recognition that pain is very real and that it is a disease. Then things will start to change.

Evans: In September 2010 more than 260 pain specialists from 62 countries attended the inaugural Pain Summit of the International Association for the Study of Pain in Canada. The outcome of this was the Declaration of Montreal, which recognises as a human right that all people should have access to pain management without discrimination, that people in pain should have acknowledgement of their pain and be informed about how it can be assessed and managed, and that all people with pain should have access to appropriate assessment and treatment by adequately trained healthcare professionals.

Earlier this year, EFIC, that’s the European Federation of International Association for the Study of Pain Chapters, convened at the European Parliament in Brussels for the second European Societal Impact of Pain Symposium. Now, the Societal Impact of Pain is an international platform which was formed to raise awareness of how pain impacts society, health and the economy. As such, its delegates are not just healthcare professionals, but pain advocacy groups, those working in the insurance sector, health authorities, regulators and those who hold the purse-strings – the politicians. Janet Graves attended the event for Airing Pain and she spoke to Beverly Collett, who’s a consultant in pain medicine at the University Hospitals of Leicester and Chair of the Chronic Pain Policy Coalition.

Beverly Collett: I have been treasurer and council member of the International Association for the Study of Pain. Now there are many chapters of IASP within Europe and they have joined together to form the European Federation of IASP Chapters. And that’s extremely important because Europe is a unique locality and, of course, we have a European Parliament.

Now, the Declaration of Montreal has been extremely important because that has stated that access to pain management is a fundamental human right. And that declaration is extremely important because it says, for the first time, that people actually have a right to access to pain services. It’s vitally important that society, and also politicians, understand the importance of pain. And I think that there’s a real need for better education of the general public, of the media, and also of politicians and members of the House of Lords, about chronic pain – the new patho-physiological mechanisms that we understand now take place within the spinal cord and the brain when people have chronic pain and also how that impacts people in everyday life.

For too long, pain has been ignored or stigmatised or thought to be too difficult or just not important enough for people to pay attention to. And I think that’s highlighted when you look at various documents from the Department of Health. Pain is very rarely mentioned, even in national strategies for cancer or diabetes, you know, the pain that people with these conditions can have is just not mentioned.

Evans: Beverly Collett. But pain would get mentioned and certainly move up the political agenda if it could be quantified in terms of cost. And whilst there are figures for the UK economic burden of specific conditions like endometriosis, rheumatoid arthritis and back pain, there’s no accurate measure of the total cost of chronic pain as a condition in its own right.

Now, as you’d expect, the European Societal Impact of Pain Symposium brought together participants from all over Europe, one of them being Brian McGuire. He’s a clinical psychologist from the National University of Ireland in Galway, where he works in a pain clinic and co-directs the Centre for Pain Research.

Brian McGuire: We did a study where we looked at the cost of pain at an economic level and then sort of extrapolated or worked out what that would cost at a national level for people with chronic pain in terms of health service costs and lost productivity, welfare payments and so on. We found that for people with the most severe level of pain, it’d cost around €30,000 per year in terms of healthcare costs and lost productivity. And then when we extrapolate that up to a national level, it was working out at €4.7 billion per year, which is about 2.5 per cent of gross domestic product in the country, so it’s really a staggering figure. Unfortunately, a lot of the money is being funnelled in the wrong place, from the point of view that obviously people who can’t work need disability payments, but I think that some of those monies could have been directed towards service provision to people who were in the early stages of pain and might’ve prevented, for some people at least, the development of a chronic course.

We’ve heard that people can take many years to get to see a pain specialist or to get to receive treatment for pain problems – as long as seven years, one of the stories we heard yesterday – and I think that happens for two reasons: I think, first of all, there aren’t enough services – there are inadequate services available for people, with very long waiting lists – so in my own hospital, we have a two-year waiting list to see a pain specialist. So I think that’s one of the reasons: there just aren’t enough people there. The demand is great, we know, from all of these prevalence studies that very, very large numbers of people in the population have chronic pain, and so there just aren’t enough doctors, nurses and other health professionals available – that’s one reason.

I think the other reason it takes so long for people to see a specialist is that it takes a long time to actually get referred, because I think that many GPs still don’t understand chronic pain and still think of pain as something that should resolve quickly. And each time the person comes back to their GP, they’re almost treated as an acute case again and sent down for treatment again, almost as if it was a new experience of pain, rather than seeing the person’s pain as being on a longer-term trajectory and referring the person to a specialist service earlier. Of course then, when they’re referred, they will still have to wait for the service, but the access problem and the lack of education are two of the reasons that people wait so long.

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Collett: One of the things that has struck me about this conference is the patient voice.

Plunkett: My name is Gina Plunkett and I’ve been living with chronic pain for 15 years and I’m also chairperson of Chronic Pain Ireland, which is a national support group for people living with chronic pain in Ireland.

Collett: The patient voice has been really strong and I think it highlights that we all need to be aware that we should put the patient at the heart of any pain services that we’re organising, so that the patient is at the centre and we organise services around the needs and for the benefit of the patient.

Plunkett: I was involved in a road traffic accident 15 years ago. I was rear-ended – I was stationary at the time. It was quite a severe impact – I hit my head on the headrest, and the first thing I noticed was numbness in the roof of my mouth. By the time I got out of the car, I experienced pain travelling from my neck right down to the base of my spine. I knew that this was whiplash, but I thought, well, this will only last maybe three months, [but] as time passed, it actually got worse. The pain, it just got worse and worse, and I felt that by the end of a two-year period it had reached a crescendo and it was unbearable.

I was a practising barrister at the time and, strangely, in my field of work, I would’ve done a lot of work in terms of personal injury compensation claims and I worked on the side of the insurance company as a defendant. And therefore I was very sceptical of pain and I would’ve read many medical reports of people who’d had a similar accident as I’d had. I doubted my own pain because I felt that it should’ve cleared up after three months, and then I thought six months, and then I thought a year. And despite my knowledge and, I suppose, my professional background, the journey through the health system was a minefield and it actually wore me down considerably.

I felt that I had to find out who I needed to see next to get help. And even though my GP didn’t doubt me, I don’t think he knew what to do. I used to long – and I say that, absolutely long – to push through a door and I’d imagine myself like some person crawling out of a desert, just [getting] through a door and on the other side of that door would be all the professional people who could care for me and pick me up, and give me the attention and the care – medical care – that I needed. That’s what I longed for most. And I kind of thought of it as a one-stop shop, but I never found that one-stop shop and I found that extremely demoralising.

The lack of awareness of chronic pain generally in society and among my friends and my colleagues added to the burden of living with chronic pain. I actually felt very isolated. Ultimately, I had to give up work. As a barrister, I was self-employed, and I did that with a very heavy heart, a very heavy heart, after all the years of study and establishing a practice. I have to say that the day I left the law courts, thinking I was only going to leave for a few months, just to give myself a rest, to what I then saw as recuperating, because I still felt the pain would go away if I gave myself a chance. I left that day with tears rolling down my face because I felt utterly defeated.

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Michael Zenz: I’m Michael Zenz. I’ve been chair of Anaesthesiology and Pain and Palliative Care at the Ruhr University and I’m past-President of the German Pain Society. Most of my academic work is focusing on pain treatment – I established the first pain clinic at the University of Hanover in ’79, so, many years ago. I also held the first chair with the name ‘Anaesthesia and Pain Therapy’ in Germany. I think that was an important step forward to make pain visible as a real topic, in a time when people said pain is only a symptom and not an illness in itself.

So, science has made enormous progress, but the reality for the patient is still very much back[wards], so there is a huge gap between first-class research – for example, in Europe, we have a real first-class research in pain. But the reality for the patient in diagnosis and treatment still is very weak, so we have a huge gap between all what we know and what we really do.

The only way to get rid of the problem of chronic pain is not to treat the chronic patients, but to make prophylaxis [preventative measures] that the patients not develop chronic pain. So we have to start at the real beginning and the real beginning is acute pain and that has to be diagnosed and treated effectively and that can prevent chronic pain. When you take the example of back pain, God has not made the back in the wrong way, but how we treat our own back, that’s the wrong way. So in the very beginning, we have to say, okay, you are overweight, you have not enough motion, you have stress at your profession, you have possibly stress in your family… and we have to treat all these and diagnose all these together.

One of the most important points is that the first-line doctors should be trained in diagnosing – not only treating, but really diagnosing – and then effectively treating pain.

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Evans: Now at this point, I’d just like to remind you that whilst we believe the information and opinions on Airing Pain are accurate and sound, and based on the best judgments 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.

This is Airing Pain, and we’re reporting on the second European Societal Impact of Pain Symposium at the European Parliament in Brussels.

Judy Birch: I’m Judy Birch, Chief Executive of the Pelvic Pain Support Network. It’s really important to be part of what’s happening in Europe, because pelvic pain has been excluded from a lot of the work that’s been going on in pain for many years. And we feel that by working with others on a common agenda, we are much more likely to get progress faster than we could possibly on our own, even in our own country.

It’s very difficult to come to terms with pelvic pain because it’s not generally talked about. It affects more women than men, but men can have a range of pelvic pain conditions: conditions affecting the bladder; the genital organs, just as women. There are more conditions that affect women, but the numbers are huge, in fact. And some of the patients are very young when they present to a GP. We know that it takes, in the UK, around seven or eight years to get a diagnosis of endometriosis, for example. A lot of damage can have occurred in that time.

We had the statistics for the numbers of women with pelvic pain in the UK published in the Chief Medical Officer’s report in 2009 and when you have a statistic in an important public report, then it gives less possibilities to exclude it from the agenda. And so now we have something we can use to insist that it is included. The figure for the UK, in women, is one million – and that’s without the men. And it’s hard to imagine how it was ever not part of the agenda.

Evans: Judy Birch of the Pelvic Pain Support Network. So statistics are important. Mary Baker is President of the European Brain Council and of the European Federation of Neurological Associations:

Baker: We’ve tried very hard to get a lot of data collected. If I just tell you quickly about one of the projects: this is working with one of our partners, which is Parkinson’s. They developed, in their Parkinson’s World, a PDQ – Parkinson’s Disease Questionnaire – 39 questions for people living with Parkinson’s – nothing for the carers. The carers have to rely on another measurement. And so we negotiated with Oxford University that we would like to develop the Carer Strain Index for people looking after people with Parkinson’s.

Very interestingly, the young person who did the work for the Parkinson’s disease patients offered his services again to do the carers’. He lasted just four months, as he found the distress from the carers much harder to bear than from the patients themselves. So, a change of researcher and the results are coming out. We’re going to launch them in Budapest.

Lots of people shake their heads wisely and say they understand about caring. But, not until you really read the answers in the carers’ questionnaire, will you appreciate what it’s really like to take on the responsibility of another person who, however hard you work, however hard you try, is deteriorating before your eyes. The strain is enormous.

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Ros Meek: My name is Ros Meek and I’m the director of the Arthritis and Musculoskeletal Alliance. So often we really look at the issues that NICE looks at, which are more about quality of life in terms of cost, i.e. cost of treatment. But, actually, if, by having ankylosing spondylitis at the age of 25, within a year, you’re going to be out of the workplace – that’s a massive impact, both personally and also to society, because society will then need to support you through the benefits that you will claim to keep you going. And so it’s really important for us to be able to quantify what the societal impact is. So whilst the costs initially of drug therapy given at an appropriate time might sound very large, actually, if you look across a person’s lifetime from the age of 25, the cost of drugs diminishes as against the cost of the social insurance cost of enabling people to be on benefit for many years.

Evans: Ros Meek. Now going back to that Declaration of Montreal, there was much discussion in this European Societal Impact of Pain Symposium on the acknowledgement and treatment of pain as a human pain, and also whether pain should be classified as a disease in its own right. Ceri Phillips is Professor of Health Economics at Swansea University:

Ceri Phillips: I don’t think we can fully eradicate pain from any condition and any society, but to make it manageable, to make it tolerable, to make it appropriate to manage is something which we should all aspire to. We need a concerted approach from a multi-factorial perspective, with all agencies involved. The politicians ultimately make decisions as to who gets what resources and there’s an obligation there to ensure the management of chronic pain perhaps features higher up the priority list than it currently does, where it seems to be very near the bottom.

But I think there’s also the realisation that clinicians need to do better; that they need to utilise effective treatments and they need to remove those treatments which serve no purpose whatsoever. There needs to be further research to determine what works and what doesn’t work and in what circumstances it works. We need to ensure that we use resources wisely and efficiently – we do not want to waste resources. We also need to ensure that patients themselves are empowered through education, training and knowledge of what works and they can be involved in the management of their own condition, which I think would then go back to the point made earlier about [pain management] being a human right – they can actually contribute to the establishment of what is a tolerable level of pain.

The notion that pain is a symptom – pain is a subsidiary condition of other conditions, I think, will always be debated, but what the evidence does show is that if pain is appropriately managed, the ability to cope with the other condition, the other health problems is made easier. Pain has such a negative impact on quality of life that even patients with heart disease who have tolerable pain are in a better health state than those patients with heart disease who’ve got considerable pain. So there’s an urgency and an emphasis: we need to address pain irrespective of where it’s located; irrespective of what the other conditions and health problems are.

Evans: Health economist Ceri Phillips. Here’s Gina Plunkett again:

Plunkett: The best way to describe the level of pain that I was in is really to describe how I, for example, would feel that my arm had been crushed and crushed by a concrete wall. And I often thought to myself, why is my brain telling me that this arm is crushed by a concrete wall and not a steel girder or a fallen tree? I don’t know why… It was like my brain was battling with the reality, which was that I had a perfect arm. And I used to think I would like to hack it off and throw it away. And so that was the level of pain I was dealing with.

And as Professor Krauss here, the next president of EFIC, put it, he described chronic pain as ‘a persistent torment’ and that would be exactly how I would describe it. All I really wanted was for the pain to be brought down a level that would enable me then to start living again.

So I always had the hope that if I did get the right person and the right treatment and care, then I could do the rest myself. And a huge part of that was being believed. So once I was believed, then I could start believing in myself again, that I had something which was very real, that it was a disease. And then I could do the rest myself with the pain management techniques we all know of: pacing, relaxation and distraction, but – with the hope – I was able to start working on changing my life and adapting to my new situation, which was living with pain. Up to that [point], really, I think I went into denial, because it was my only way of coping, where I felt that there was no support or no recognition that what I had was very real.

Baker: Pain is not just hitting your thumb with a hammer – it is much greater. And I have to say I thought I was pretty well-versed in understanding disease and pain, but it’s not until I actually start rubbing shoulders with people who’ve lived years with pain that you begin to see what they’re really up against, because there’s no outward sign of their disease.

Evans: Mary Baker, president of the European Brain Council and of the European Federation of Neurological Associations. Now she chaired a meeting at this Societal Impact of Pain Symposium to explore the possibility of setting up the Europe Pain Alliance. This would add the essential patients’ voices to talk about pain within the European Commission and Parliament.

Baker: There are many so-called ‘diseases’, and it’s quite easy to distinguish them, for instance, there’s the European Parkinson’s Disease [Association] – a clear remit to improve quality of life for people living with Parkinson’s disease. The public know a little bit about the illness. They can actually see the illness with the well-known pill-rolling tremor and they also know people living with Parkinson’s disease. But pain has a greater challenge. People make judgments about pain. People are hysterical with pain. People are taking time off from work. It’s really important that we can actually define pain as a pain disease, rather than just ‘with rheumatoid arthritis, you have pain’ or ‘[with] cancer, you have pain’. It needs defining as an entity in itself, and to be better understood.

EFNA is a federation of neurological associations, and unfortunately at the moment, pain hasn’t even entered our radar. We’re just conscious that it’s not on the radar. So we’ve been doing projects to try to make generic things across all the diseases, because, you know, we have stroke and Parkinson’s and multiple sclerosis; dystonias, ataxias, Huntington’s… You’ve got to try to find a common formula, so we’ve looked at carers; we’re now looking at the pelvic organs, would you believe. But, you know, the neurologists are not always in tune with asking questions about bladders, about bowels, about sexual dysfunction, which are a major part of quality of life. They’re not always aware of mood changes. So all these things we’ve been looking at, but the one thing we have not been able to look at, because there’s no voice for us to talk to, is pain. That’s why we’re really interested in seeing this group emerge.

We’re acutely aware that one of the things that all of the diseases sitting around our table [share in common] is they all suffer pain. What we need now is the voice of pain to join us and to help sort out what sort of projects need to be developed and to see if we can improve the quality of life of people living with chronic pain plus people living with diseases which have pain.

One of the most important tasks for this new emerging patient group, Europe Pain Alliance, is to raise the profile of pain. Because, you know, there’s one thing about getting delivery of services, but there’s also another very major point in being a patient organisation – it’s trying to effect change, and we need a lot of change in the management of pain.

I must confess I don’t know the future of pain management, but one thing I surely know is you don’t just want doctors and nurses making decisions without the patients’ voice. And if you do have a European organisation, there will be a patient’s voice sitting at that table. And it’s really important because although doctors and nurses understand the mechanics and the development of pain, the thing that the patient brings to the table is what it’s like to live 24 hours a day, every day of the week, every day of the year, with pain.

Plunkett: I felt it was very important for the patient’s perspective to be heard; for the story to be heard. I mean my story is a narrative that everyone, I think, living with chronic pain would agree with. And there are certain issues that are common to everyone living with chronic pain and therefore I felt what I was saying was being said for the millions of people living with chronic pain.

Evans: Gina Plunkett. Now before we end this edition of Airing Pain at the second European Societal Impact of Pain Symposium, I just want to remind you that you can put a question to our panel of experts or make a comment about these programmes via our blog, message board, email, Facebook, Twitter, or even pen and paper. And the contact details as well as the link to download all the editions of Airing Pain are at our website, which is painconcern – that’s one word – painconcern.org.uk.

McGuire: We’re here speaking at a very important meeting in Brussels on the societal impact of pain and even in well-developed countries our services generally are not adequate. So you feel heartened and a little disappointed that there are so many countries in the same predicament. But the positive aspect, I guess, is that all the countries are coming together with a common agenda, which is to make service provision better for people with chronic pain, so I think it’s a positive development.

Zenz: The work of EFIC could be very important and is very important because EFIC is promoting, really promoting, much more than some national societies. And EFIC, as we can see in this meeting here, has the force and the power to collect all the important persons together and to promote pain diagnosis and pain relief.

Meek: I think politics is the main way that we can achieve change. We need to look at all the stakeholders that are involved in changing policy, changing public opinion. And so I think in looking at what our European Members of Parliament can do – how they can actually impact on our national policies – is a vital part of the equation when we look at trying to change the sorts of things that will make life better.

Baker: I thought we were going to face a lot of hurdles about the splitting down of pain, you know: back pain; face pain; pelvic pain; neuropathic pain. Not at all – there was passion around that table to take it forward as pain.

Plunkett: I am highly impressed. I think it has been a fantastic event. I think it’s going to set the scene for serious action here in Europe and I really hope what happens here now – and we’re talking about a written declaration drafted and drawn up to be presented to the parliamentarians – I really hope that that will start a serious campaign to have chronic pain put on the agenda of the European governments and the national governments.

Contributors:

Dr Beverly Collett, Consultant in Pain Medicine, University Hospitals of Leicester NHS Trust
Dr Brian McGuire, Senior Lecturer in Clinical Psychology, National University of Ireland in Galway
Gina Plunkett, Chairperson, Chronic Pain Ireland
Prof Michael Zenz, Chair of Anaesthesiology and Pain and Palliative Care, Ruhr University
Judy Birch, Chief Executive, Pelvic Pain Support Network
Mary Baker, President, European Brain Council and European Federation of Neurological Associations
Ros Meek, Director, Arthritis and Musculoskeletal Alliance
Prof Ceri Phillips, Professor of Health Economics, Swansea University.

The societal and economic impact of pain and driving pain up the agenda

This programme was funded by an educational grant from Grünenthal.

Contributors:

Dr Beverly Collett, Consultant Pain Medicine, University Hospitals of Leicester NHS Trust
Dr Brian McGuire, Senior Lecturer in Clinical Psychology, National University of Ireland, Galway
Gina Plunkett, Chairperson, Chronic Pain Ireland
Professor Dr Michael Zenz, President, DGSS, Dept of Anaesthesiology, Intensive Care and Pain Therapy. Ruhr-University, Bochum.

How pain affects family members and how family therapy can help

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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.

Paul Evans: Hello and welcome to a new series of Airing Pain, programmes brought to you by Pain Concern, the UK charity that provides information and support for those of us who live with pain. This edition has been enabled by a grant from Big Lottery Fund Awards for All, Scotland.

Dr John Rolland: The illness is an uninvited guest in the family.

Dr Elaine McWilliams: The sexual side of their relationship was incredibly important to them and this had started to break down and she actually felt that he didn’t want her anymore and that she was no longer attractive because of the cancer.

Rolland: We have to deal with this person who came into our home which is what we call ‘pain’ and it puts it out there so that all of us are relating to the issue of the pain not just the person who is in physical pain, but it becomes something that everybody in the family has a relationship to this.

Jan Parker: And the conversation became – not about ‘how to fix my naughty boy son’ – it became about the impact of pain and fear on the family.

Rolland: Somebody corrected me – a patient once and said – ‘You know, it’s not really a guest I didn’t invite them – this was an intruder – he broke into the house.’ [Laughs]

Evans: Well guest or intruder – when chronic pain enters the home – it takes over everyone’s life and not just that of the person in pain. But the way relationships are managed will have a huge bearing on who stays in control, the pain or the people.

So who can help put you rather than pain in the driving seat? Well earlier in the year, the Association for Family Therapy Scotland in association with NHS Education for Scotland organised a two-day workshop under the heading ‘Family perspectives on illness and multi-stress challenges facilitating resilience and growth out of illness, crisis, trauma and loss’.

Jan Parker is a family therapist working in the NHS. She’s also Communications Officer for the Association for Family Therapy.

Parker: Family therapy is a way of working not just with the individual child, young person or adult who is experiencing difficulties in their lives but with all the people who are important to them. And that might be family members it may also be teachers, friends, whoever can help make a difference in their lives. And it’s actually a way of freeing up people’s strengths and building on their rich relationships that matter to them. It’s like a pebble in a pond, the patient’s the pebble going into the pond but the ripples go round and round and affect everybody in concentric circles and it has a huge impact on the family.

Evans: Dr Elaine McWilliams is a consultant clinical psychologist working with cancer patients in palliative care and…

Elaine McWilliams: From my own personal perspective – more recently I have become quite disabled – I look absolutely fine if you look at me now – you wouldn’t know – would you?

Evans: And you’re smiling!

McWilliams: And I’m smiling – you really wouldn’t know. I actually can walk about five minutes or stand for about five minutes and then I’m in agony. But I look absolutely fine.

Evans: So how does that impact on the way you feel?

McWilliams: I think it’s become part of who I am. I have good times and I have bad times. That’s the truth and my husband, we’ve been together now for 19 years.

Evans: And you’ve had the pain for 20 years.

McWilliams: For 20 years – yes. He knows when I’m struggling, he can tell by the way I move, I don’t say anything, I don’t complain but he can tell just by the way I’m moving that I’m in a lot more pain. But he would say that a lot of people wouldn’t pick up the subtle clues. And so, for example, we had a visit down in London recently and I wanted to go and visit the Natural History Museum and there was no way I could do that without loaning a wheelchair. And so I was pushed around for five hours in [laughs] a wheelchair and that was an interesting experience as well because part of me thinks that I feel a bit of a fraud because actually I can stand up and walk.

Evans: But that’s the big thing – having the wheelchair is like putting a big badge on and saying…

McWilliams: Hmmm…I’m disabled! Yeah!

Evans: But how were you treated when you were in the wheelchair? Were you treated as you wanted to be treated?

McWilliams: I was treated very differently, very differently. I could almost tell that the look on some people’s faces that they would look at me and think, ‘well you look okay really – you don’t look ill – you don’t look…’ And, of course, occasionally I would get out of the wheelchair and stand up and go to the toilet and then people would look at you and think that you are a bit of a phony really – aren’t you?

Evans: ‘This is a wind up.’

McWilliams: ‘This is a wind up’ – yeah! And a very interesting experience being on a different level to everybody else as well and people would occasionally bump into you, push into you, knock you – didn’t see you.

Evans: So how does your own experience as someone living with chronic pain – how does that fall into your job?

McWilliams: Well I feel I’ve got a little bit of street-cred [laughs] really. I mean, not that I burden my patients and families that I work with, with what’s going on for me. But I feel I have a level of understanding of what it’s like to live with pain and what it’s like to try and manage pain and still try to have some normality; still continue to do the things that you want to do; still enjoy family events. And I still want to host family events in my house, I want people to come, I want family to come, I want to feed them, entertain them… And I see that with my patients as well, they want to carry on – the families want to carry on as normal as possible.

Evans: But it’s not just the events, is it, you talk about wanting to pick up your three-year-old child.

McWilliams: Yes.

Evans: Well okay there’s the physical thing that you find it difficult, but there’s the guilt.

McWilliams: Yes absolutely! If we go to the park I feel like I should be running around with him and after, say, well five minutes at the moment, I go down on my haunches – that gives me some relief and I pretend I’m looking for something in my bag because I don’t want to stand out. I don’t want to look unusual in the playground compared to other mums and so I’ll sort of ferret around in my bag, pretending … you know to just get a little bit of relief.

I see families – I see that in them as well, the guilt that they can’t do the things that they would like to do with maybe younger children, adolescents as well. And grown up children, where they would like to be involved in grandparenting.

Evans: As a psychologist, how do you help them through this?

McWilliams: I listen to their story and to the family’s story, it’s really important for me to try and understand everybody’s story in the family because it will all be slightly different and hopefully when I’m working with families where they may be struggling, they may be in crisis – what I hope to do is to put all those stories together so that as a family they have a coherent story they have a shared story, shared narrative.

Evans: Because going through, let’s say a standard nuclear family, a couple, he has chronic pain and he is going through cancer treatment, pain from the cancer, misery from the treatment, there’s the wife trying to cope with her own emotions.

McWilliams: And she’s terrified, she’s absolutely terrified but she doesn’t want to show that maybe. She wants to protect him and he’s trying to protect her and them both trying to protect the children and everybody’s… and everybody’s [laughs] trying to protect everybody else. And nobody’s able to speak. And what I suppose I try to do is help them to speak – to find a voice to share. Maybe not everything because, you know, we are entitled to keep some things but some things are not spoken about, because people are trying to protect each other.

Evans: Dr Elaine McWilliams. You’re listening to Airing Pain, the programme brought to you by Pain Concern, the UK Charity that provides information and support for those of us who live with pain. Now 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.

Now today we’re talking about relationship issues surrounding chronic pain and a key speaker at the Association for Family Therapy Scotland workshop, was Dr John Rolland, he’s a physician and family psychiatrist at the University of Chicago. He’s also Co-Director for the Chicago Centre for Family Health. He adopts what he calls a resilience approach:

Rolland: Resilience is the – we don’t just think of it as bouncing back from something which means trying to stay where you are but to get back, but actually bouncing forward. How can you actually become stronger than you were before the illness? You come to observe more the preciousness of life, so again, some people, I’m interested in how some people develop this ability or have this ability and our work is to help families sort of draw on their resources.

Evans: So maybe at the start of somebody developing chronic pain in a standard family, say, husband, wife, two children, then there are four people with completely different outlooks on what is happening to that unit. And, firstly, there’s the husband who has the pain – well, let’s say it’s the wife, who has the pain – the husband may go into himself, thinking – how do I cope with what is going on? He’ll have his own anger, she may have guilt over not being able to cook or work. The children may be feeding off how the parents are maybe dysfunctional – that is four separate scenarios. How do you bring it all together?

Rolland: I try to help a family first to understand how it works as a family, so, how do you normally communicate? What are the limits of communication? Often with a physical problem, as in this case, in an adult, it pushes families or parents to think about how they communicate with their children that might be different to than before somebody was in pain, or somebody had a physical problem. It forces, sometimes, more openness, sometimes kids have questions – is this going to get worse, could you die from this? Did I cause it? There are a lot of initial questions.

So I’m interested how first of all – how the family communicates. How do they divide up who does what, because sometimes families have to get more creative if I’m in pain today, then I cannot do what I would normally do? There has to be somebody else who can do that. So in a traditional family with a husband and wife, how they have divided their roles, may have to be reconsidered.

Evans: But a family isn’t just about roles is it? Who does what; let’s say we’ve got a teenage boy going through all that teenage stuff. Teenagers and children can – press a button – we’ve got an expression – to wind you up. That’s not a role but that is what teenagers do.

Rolland: Right – so one of the things I help families think about is where is everybody in their development. Because if it’s a 15 year old and a 12 year old this is different than a five year old and a three year old. One of the things that gets more complicated when it’s a physical problem in a family is that sometimes anger is an expression of fear. ‘Could this happen to me or could I lose you?’

So sometimes in my experience when anger is being expressed in a family, sometimes it’s also because they’re suffering or they’re anxious about what will happen. So families need sometimes some assistance to reinterpret feelings and with adolescents it’s very difficult. I work with, for instance, adolescents who have diabetes, well, if they are irritable and oppositional and have behaviour problems, this could be because their blood sugar is too low, this could be because they have a chronic illness and realise they are going to grow up into adulthood and are going to have this disease for the rest of their life and this makes them more angry.

Or this could be just average adolescent or – what did you call it? Wind-you-up behaviour [laughs]. So I mean sometimes this gets confusing and families have to learn what is coming from the illness, what is coming from the pain, what is really an expression of something else because sometimes it can easily become that, issues of the family’s get expressed through somebody’s symptoms, because symptoms get worse if there’s a lot of strain. People learn that if there’s a lot of stress, usually the pain gets worse.

Pain is also invisible, so how one communicates about pain is complicated. If I say I am in pain, you might not… how are you going to question whether I am in pain? Sometimes physical symptoms start to have a currency or if parents are fighting, if a child has asthma and gets difficulty in breathing, the parents will stop fighting and focus on the child the child learns I can make the family calm if I get my symptoms.

Evans: That’s right but the child can also – and they are very good at this – work out I can control my parents if I get the symptoms.

Rolland: Yes, that’s possible. Often the child is afraid that if the parents keep fighting they may not stay together, something terrible will happen, so it’s not fair to say it’s always manipulation. Sometimes children, truly their symptoms get worse if they’re watching conflict elsewhere in the family. But also they can start to use that to calm the family down.

Evans: Family psychiatrist and Co-Director of the Chicago Centre of Health, Dr John Rolland.

Now, here’s an example focused on the child in the family who is ill. However, a child that is not ill but has to deal with the situation of someone else in the family who is ill, has a different set of issues to deal with. Family therapist Jan Parker:

Parker: This is a family that I worked with a few months ago and the young boy, who was 12 at the time, had been referred because of his violent aggressive and challenging behaviour at home and at school. I mean it was quite extreme what this kid was getting up to and doing and the levels of distress that he was displaying and also that he was causing others. Adults were starting to be frightened by the force of his temper and also the destructive power of that within the family and within school and he was at risk of being chucked out of school yet again.

He came with very individualised referral information: you know, this child is this and this child is that, he has done this and he has done that. When we brought the family together to talk about how we might work well and most usefully with them, it turned out that his youngest sister was in remission from a long term – a good amount of years of cancer treatment – things were going well for her but the family focus had gone, necessarily, onto this young girl, around the time and through the years of her treatment and recovery. And this young boy’s very favourite grandparent, his grandmother, had died.

And by getting together and talking through and doing like a kind of family map of what had happened and when and who’s important to whom and what relationships were in the family, who was close to whom and what relationships had fallen further away. The mother realised that she found it quite difficult to even begin to describe what had happened with her relationship with her son because she felt like she had lost him. She also talked of fearing that she will lose her daughter and also the experience of feeling so helpless and at a loss of what to do and her daughter was experiencing pain and not being able to help and how stripping away of her sense of worth and value and competency as a parent that had been. And about the experience of her handing over her young child to a team of professionals to care for – how that had rocked her relationships with her own self-image – with her relationship with her husband. How her focus and vision had become a bit tunnel-visioned on her daughter.

Just being able to all gather together and the conversation became about not ‘how to fix my naughty boy son’ but about the impact of pain and fear on the family. And they came back once and said, of course, they had a long way to go but they had realised that how pain had kind of shrunk their possibilities and sense of what they could do in the world together and they had felt buffeted and depleted by it. And just having a pause and pulling back and looking at the wider picture had enabled them to begin to see where they wanted to reconnect and make steps to do that.

It was such a joy to see them come back, they had been to Pizza Hut and had started to work at connecting again and just doing things like playing scrabble as a family. And this lad was still, I don’t think he was ever going to be an angel, but he felt like he had a place again, he felt like he had a belonging again. And his sister’s experience of pain and his family’s experience of their pain and their relationship had kind of shoved him to the periphery and they were making steps to come back together.

Evans: Jan Parker for the Association of Family Therapy, Dr Elaine McWilliams again.

McWilliams: I was based in a hospice and we had someone who was going to be admitted (and there was a lot of concern. I think this goes wider than the family – this now goes to the professional family, if you like) who also had a diagnosis of manic depression. And because I’m a mental health professional they were very keen for me to support this. And they were actually very nervous and there was a lot of concerns, so I said okay I would put aside two days in my diary for this person coming in, so I can meet the patient herself and meet the family. I can then talk to the staff and I can be there to support this.

So this is what I did, I met the patient and, you know, her mental health diagnosis had nothing to do with where she was or her pain – and I mean total pain – it had nothing to do with that really. Her concern was about leaving her beloved daughters – adult daughters, who had children of their own. But nevertheless that was where her real pain was. It wasn’t really about her recurrence or the fact that she could not long now be cured. [Laughs] It was about leaving her babies, her girls and how would they be.

This was a very matriarchal family – mum was the centre – the hub. And there was a lot of love in this family so I spoke to the daughters and heard their stories and then I got them all together and got them to share their stories and then I went to speak to the staff and reassure them and listen to their concerns and we had a really successful intervention – we managed her pain which had been unmanageable in the community. And the family had been making lot of demands on professionals, because they were anxious, they were scared, they were frightened, they didn’t have a kind of road map, if you like, of what was happening and what was going to happen.

She was discharged home and I supported the daughters, she actually didn’t really need much more input from me, supported the daughters on what was to come and where they were going and their concerns and anxieties. I was just amazed by the resilience of the family once they had had a little support and understanding – a huge amount of resilience, they coped so well, they really did.

Rolland: Sometimes what happens is that when one person is in pain, then the other family members feel that we shouldn’t do things that he can’t do because then we will make him feel bad. Actually, paradoxically, that is not good for the family, because if everybody gives up all these things because they don’t want dad to feel bad because he can’t walk in the woods anymore, then people get angry and people feel that the pain is controlling everybody’s life.

In marital relationships, this is very important, if the well spouse gives up everything they can become very resentful – not only are they providing care-giving but they can’t do what they want. It’s much better I think, for the couple to negotiate that maybe once a week that the partner who doesn’t have the pain, does something with a friend that they would’ve done with their husband so that they feel that the disease isn’t controlling them. This actually is healthy for the relationship and is part of what I have to help couples with so that they have to define, allowing more separateness at times to preserve the marriage.

McWilliams: One of the areas I feel is maybe neglected as well is about how pain interferes with the intimate relationships – sexual relationships, but real intimacy as well. I think these things are very difficult to talk about as well and its one of the things I try to open up a conversation, with the patients if I can.

Evans: So how do you do that?

McWilliams: I ask: ‘how is your relationship with your husband? How is your relationship with your wife in terms of your intimate relationship?’ And if they say, ‘do you mean sex?’ And I say ‘well, everything including that.’

I remember working with a couple who were in their eighties – I have permission from all of my patients to use some of their information in anonymous form for teaching and other purposes – and I wrote a paper that was published on this that was looking at these issues of intimacy and attachment and the sexual side of intimacy. And for this couple, they had hit a crisis, she had a terminal diagnosis but she was reasonably stable at this time and was quite well.

Her pain had been managed but there was other pain and the medical nursing team came to me and said could you kind of see this patient? I wanted to see them as a couple and it emerged that the sexual side of their relationship was incredibly important to them and always had been and this had started to breakdown. And she actually felt that he didn’t want her anymore and that she was no longer attractive because of the cancer. He actually felt that he couldn’t approach her in terms of full intimacy because he was frightened of hurting her.

So they had these two stories if you like but they hadn’t shared them. So they shared them and we talked about that and that changed things and they were much happier. I later saw them a couple of times afterwards and they were doing really well, she actually didn’t need as much pain medication after that. She eventually did die and I saw the husband a few times afterward and he was doing okay, deeply grieving but his memories of the last few months of their relationship together had been good and it could have been very different.

Evans: Dr Elaine McWilliams. So how widely available are family therapy services? Jan Parker of the Association for Family Therapy:

Jan Parker: It’s very much still, unfortunately, a post code lottery. It’s usually there somewhere if you know how to ask for it. There’s information available on the AFT website on www.aft.org.uk about how to find a family therapist, what routes to take, who to ask if you feel that it would be helpful to you. There is also information about what family therapy is and professionals find this useful as well as family members.

Evans: So I’m getting the impression that a family therapist only comes in when things are identified as having gone wrong – wouldn’t it be better for somebody in the system to start with a family therapist, listen your child, your husband is in chronic pain, this isn’t going to go away, let’s start here because this is what you’re going to face.

McWilliams: Yes, I think that is a hugely important point. And again in some areas and in some services, that is beginning to happen because it makes common sense that the family resources are brought together to support the person in pain and those who are going to support them. And in some areas it just is not happening, so it’s a question of political will and also a shift in service mindset. We still in this country have a very individualised, medicalised model that places any situation any suffering any circumstances within the individual. Things are changing, thankfully, there is a real sea-change in attitude, but it is yet to roll into a kind of revolution of practise and service delivery that would actually make a real difference, you know, it’s patchy still.

Evans: Jan Parker. And here’s that web address for the Association of Family Therapy again – it’s aft.org.uk. And I would just like to remind you that you can put a question to our panel of experts or make a comment about our programmes via our blog, message board, email, Facebook or Twitter. And all the details including where to write to are at our website and that’s painconcern.org.uk.

I’ll leave you with Family therapist Jan Parker:

Parker: Families will enter the room looking like it’s a little bit like it’s a group trip to the dentist because they have a sense that they have come to have their problems investigated. That they’ve done something wrong and our job as family therapist is to root that out and fix them. Families feel very relieved and heartened by the experience of the process which is very different. It’s about… families having opportunity to recognise their strengths and their resiliences to draw on those and build on those. And every day I feel very humbled about what people can do together.

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 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).

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

To listen to this programme, please click here.

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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.

****

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.

****

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

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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.

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