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How acupuncture and TENS can help relieve pain, plus, a new web service aiming to educate health professionals about pain

To listen to this programme, please click here.

We take a look at the role of the pain specialist nurse in the community, eavesdropping on two consultations given by Kathryn Nur at her nurse-led clinic at Tenby Cottage Hospital, Pembrokeshire. We hear how Kath helps her patients, learning about what TENS machines are, how to use them and how they can help those in pain, how acupuncture can also help, and the importance of listening to what the patient has to say.

On the contentious issue of how little training medical students receive on pain matters – fewer hours than vets – Ann Taylor from the faculty of pain medicine at Cardiff University talks about a web service that may go some way towards redressing the imbalance.

Issues covered in this programme include: TENS, acupuncture, electro-acupuncture, web service, educating health professionals, pain specialist nurses, back pain, depression, ache, listening to patients, GPs and insomnia.

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

I’m Paul Evans and in today’s programme I’ll be looking at an alternative therapy that’s become more widely available in the health service.

Richard: I’ll be honest with you. I don’t know whether there is any scientific worth in it or whether it’s a placebo effect, but I don’t care because it works for me. It’s as simple as that.

Evans: And I’ll be looking at how a new website should help health professionals become more conversant with chronic pain-related issues.

Ann Taylor: The British Pain Society has recently done a survey and it shows that, in fact, vets get more education than health care professionals.

Evans: And I’ll be looking at the role of the pain specialist nurse in the community.

Kathryn Nur: The treatments that I tend to offer in my area of being a nurse specialist is that I do acupuncture, which involves manual acupuncture or electro-acupuncture. I also do trigger-point injections to muscles, such as trapezius muscles, using steroids and local anaesthetics. I show them how to use things like TENS machines and then other things are relaxation techniques, management advice about medication, the problems that they might be having with other sleep issues, things like that.

Evans: Kathryn Nur is a specialist nurse in Pembrokeshire, West Wales. She works with people in chronic pain. I joined her at her nurse-led clinic in Tenby Community Hospital.

Nur: We’re doing some treatment with this gentleman called electro-acupuncture, where we apply electrical current to pairs of needles. The idea behind that is that with long-term acupuncture treatment, what you want is to try and extend the benefit as long as you can, obviously, between each treatment. The evidence suggests that slightly more stimulation produces a longer benefit, so we use electrical current to incite a deeper stimulation effect.

So that’s what we’re going to do this morning. We obviously target the area where this gentleman’s got pain. There are some recognised acupuncture points, which overlie the area, which we use, but we also use a Western approach, which is trigger point needling, which is often over the myofascial points, so we tend to use a combined approach. We use some traditional Chinese points and some Western points, which are the trigger points.

How long have you been coming in now, Richard? It’s a quite a while, isn’t it? About a few years now.

Richard: A few years with you. I started off with Dr Evans. The first treatment I had with my GP and I told her if I thought it would work, I would tell her and if it didn’t, I would also tell her. I’ve lost count of how many pins and needles she’s stuck in me and God knows what else. And I went away from there thinking, ‘Well, that ain’t much.’ The following morning – I didn’t even connect it because it had just gone from my mind because it didn’t do anything the day before – the following morning, I woke up, and I can honestly say it was the first morning for, however many years it was, since 1993 that I didn’t wake up in the morning, thinking, ‘Oh, I’ve got to sit up in bed, and this is going to kill me.’ And it wasn’t until later in the day that I was feeling better and I thought to myself about the day before and it was good. She gave me an intensive course for a few weeks and I used to go back to her about once a month. Just for top up.

Evans: And where is your pain?

Richard: It’s sort of a back pain-ish. I’d describe it like a toothache pain: you know where it is, but you actually can’t put your finger on it, you know? It’s one of those. And it would move about and it would be here, there and all over the place. Because I had my sternum removed, problem with that being is, of course, bits and pieces move in entirely different directions than nature intended. And the other thing, of course, is with no sternum, my clavicles – that’s a good word, isn’t it?

Nur: Yeah.

Richard: Laying on my side sometimes they cross over in the night. That’s not too bad, but when you sit up, it’s when they uncross. It’s like someone just hit you in the chest with a sledgehammer. Literally.

Evans: And for those of us who didn’t know, the sternum is the breastbone that joins the ribs and the chest and the clavicles are the collarbones.

Nur: Ready to switch on?

Richard: Yep.

Nur: Also, I’ll need to prepare your lower arm first, Richard, okay. Let me know when we hit the spot.

Richard: Yeah, got one there.

Nur: Happy with that? That’s okay?

Richard: Yeah.

Nur: What the electrical stimulant is doing its causing sort of a noxious stimulant almost. When we do manual acupuncture, some acupuncturists just put the needles in and leave them and some would say, ‘That’s enough stimulation [now] that the needle’s in place.’ When I did my training we would sort of manually rotate the needle. We’d give them manual stimulation, which is what a lot of acupuncturists do. But we find in our pain clinic, over the years, that by applying electrical current, it seems to last longer between each one rather than with the manual way. You get a few days where it’s better and, again, there isn’t a lot of scientific evidence to support one way or the other. I think a lot of it is cultural norms and what certain pain clinics have developed, but it seems to work for our client group reasonably well.

Richard: I’ll be honest with you. I don’t know whether there is any scientific worth in it or whether it’s a placebo effect, but I don’t care because it works for me. It’s as simple as that.

Nur: It’s very small, so the machine’s quite portable, so it can go with me to the various outreach clinics, to people’s homes, if necessary. There isn’t any evidence to say it’s got to be a sterile procedure. In fact, traditional acupuncturists would shy away from a lot of the over-medicalization of it, really. I mean, certainly, we haven’t resorted to wearing gloves or anything like that. We still very much use the techniques of almost passing on our energy to patients by actually manually, physically touching the needle and hopefully transferring our good energy, our good qi, to get rid of your bad qi.

Richard: It’s like anything that’s got some sort of mysticism about it. There’s a lot of charlatans out there which will jump on the bandwagon, pretend all sorts and then they make up more mumbo jumbo, so then a cynic like me dismisses the whole lot. It’s a shame, really, because as I say, for me it works. I wish I had tried it years ago, but then, it wasn’t suggested to me years ago. It does annoy me that there’s not more open discussion about it within the National Health Service and those people affected by it, because this lady does a brilliant service. It would be nice to think she had a bit more assistance, so you could get more times, you know? I can’t praise her enough, because she’s squeezed me in sometimes when she’s had a full day. So I’m grateful.

Nur: Oh, you’re going to start me off now.

Richard: It’s alright. She’s a good girl.

Evans: I’m sorry to say that Kath’s patient Richard passed away shortly after we met and I’m very grateful to his family for allowing us to broadcast this, particularly in that what he says next should be a real wake up call to some health professionals. Let us know at Pain Concern what you think:

Richard: I got a bit annoyed. I went to a pain clinic eventually in Cardiff and she put me onto somebody who was in some sort of pain organization. I spoke to this person and I was a bit annoyed because she really didn’t have any perception of what I was talking about. She wrote me a letter – she didn’t actually tell me to my face – she wrote me a letter which said there was nothing else she could do because I had tried some of her options and they were absolutely useless.

You see, with one of the things she gave me I was probably conscious for about three hours a day and it was spurts, you know? Which doesn’t work. It doesn’t hurt, but what’s the point of that? I might as well be dead if I’m going to do with something like that [Nur: Nope. No quality of life.]. Yeah, nothing.

And then she said I was letting the pain run my life. The problem that she didn’t seem to grasp was it’s because I didn’t let it run my life, overdoing things made it worse. That was the problem. She could not get that. I’m not knocking on the Health Service completely and all the rest, but some doctors, they’re sort of in a world of their own. Well, they don’t see people, they see patients, they see cases, numbers, that’s it, you know.

As far as this bypass business, I’m a success, because I’ve survived three years – ‘survived’ being the word. There’s a lot of difference between surviving and living. A lot of people in the medical profession… it’s the old thing isn’t it? Never mind the quality, feel the width.

Nur: I think going back to what you were saying, we were talking earlier about perhaps people don’t always listen to what you’re saying. They’re making, sort of, judgments about your condition or your pain description rather than actually listening to what the pain’s doing to your life. Is that what you were saying?

Richard: That’s it, really.

Ann Taylor: The British Pain Society has recently done a survey and it shows that, in fact, vets get more education than health care professionals.

Evans: Quite frankly, I find that a shocking statistic. Ann Taylor, of the Welsh Pain Society and Faculty of Pain Medicine at Cardiff University:

Taylor: The amount of education that health care professionals get is not standardised. It’s not obligatory that they have pain education within their undergraduate curriculum and so the British Pain Society’s now got a working group looking at guidelines for undergraduate curriculum pain activity, generic pain training with what should be achieved by the time the person qualifies in their pain knowledge. It’s ridiculous when you think that fifty per cent of people visit their GP because of a pain problem and yet pain is so low in terms of educational activity that goes on. I mean, obviously, now there’s the Faculty of Pain Medicine, which is helping to support and educate anaesthetists to manage pain appropriately, but there isn’t that kind of theme inherent in the undergraduate curriculum throughout the UK.

Evans: Addressing some of those issues, Ann Taylor was the main author and facilitator of the chronic pain directives in Wales, part of which concluded that all health care professionals should have access to e-learning about pain education. So she, with the Faculty of Pain Medicine at Cardiff University, has developed paincommunitycentre.org, an online learning facility for healthcare professionals.

Taylor: It is a community for people to share information, for pain education and training, to look at where certain events are that are local to them, so they can make a decision about whether they suit their educational needs. So it’s a very important resource for helping to support people who don’t want to do formal courses and people who have done formal courses and would like to update in their areas of interest and expertise.

Most of the media has been developed from the MSc in Pain Management at Cardiff, so it is at quite an advanced level. There isn’t that much that’s suitable for patients and carers, so now in 2011, we’ll be working with key organisations, to actually get courses on the site that are more bespoke to the needs of patients and carers. We’re following something along the lines of some Open University courses: that if you’re diabetic, how do you use your insulin pen? How do you measure your blood glucose? Which gives quite pertinent, important messages and we thought we’d look at maybe that kind of approach: how do you manage your GP? How do you interact with your healthcare professionals? Basic physiology to help you understand why your back’s hurting; how to reinforce your goal-setting and pacing messages. So some of those kind of things we’re hoping to host on the website eventually. We’re open to ideas because it is a community and we have got email addresses if people want to suggest things that they would like to see on the community site.

Richard: I tend to find that some doctors that have problems in their own life, whatever they may be – whether they be mental, financial, physical, whatever – tend to be better listeners, better understanders. They’ve experienced life, probably, and there’re a lot of doctors that really think they’re one above God, you know? Because they’ve had a privileged start and all the rest of it and they’ve just managed to go through life being on that plane up there which is not quite the same as the vast majority.

Evans: So here’s your chance now to talk to an imaginary group of young doctors, young medical professionals in training. Here’s your chance to tell them. How should they talk to you? How should they deal with you?

Richard: First of all, don’t talk down to me. That’s the most important thing. Don’t talk to me as if I’m an imbecile, just because I don’t necessarily know some of the long words. If I ask a question, it’s not because I want you to lie to me. It’s not because I want you to tell me I don’t need to know. It’s because I want to know. The more I understand about anything that I do, whether it’s function in my life or something I want to achieve, the better I can cope with it if it’s not right. Just talk to us like people. First of all, find out what the patient wants from you, I suppose, really, isn’t it?

Nur: People do find it very difficult. Even ourselves, if we go and see our GP, we’re not quite sure how to find the words to explain. I think it’s sometimes – it’s not maybe the words, the descriptors – I think it’s more important to know how that pain’s actually affecting you, what it’s actually doing to you as a person. I think that gives you a better insight. As health professionals, we appreciate that pain is miserable and although we understand that, we’re not feeling that pain for that patient, so it’s important more to explain to the health professional the impact that that pain’s having. That probably is more important in terms of your management of it than actual the severity of the pain, because severity of the pain is… it’s very difficult to put a number on it sometimes. People do find that quite difficult because we’re are very focused on assessing people by numbers and percentages; people do find that quite hard, because that doesn’t always reflect on the amount of distress or difficulties they’re having in dealing with everyday things, so I think just try and encourage people to talk about how it’s affecting them.

Taylor: You need to understand why people have got pain, even if it’s a very basic understanding. You need to know that very few people who suffer pain fit into a standardised patient group, that chronic pain is a multi-faceted phenomena that needs to be managed appropriately using a whole range of different approaches.

I’ve done some focus group work with GPs, with people working in the healthcare arena who are not pain specialists and they want short, time-delineated, clear educational activities that meet their needs. What we’ve done in Pain Community Centre is we’ve tried to keep all educational activities very short. You can actually go on the site and say, ‘I’ve only got five minutes. Show me all the activities that only take five minutes.’ And you get a list of educational activities for five minutes. We’ve actually geared them so they have got very pertinent take-home messages by key people who are practitioners throughout the UK in the hope that because it’s short, because it’s very pertinent, because they’re key individuals that are providing the learning, the uptake will be good. So, we’re hoping that it will have a big impact into the improvement in education, which will only benefit, hopefully, patients’ lives.

Evans: Ann Taylor, of the Faculty of Pain Medicine at Cardiff University. That website, once again, is paincommunitycentre.org. There’s no gaps in that: paincommunitycentre.org.

You’re listening to Airing Pain. And one of our aims is to get answers to questions you’ve raised with us. Here’s one: ‘I find TENS machines moderately effective, but have major problems getting the electrodes to stick all day, particularly if I’m also using heat. Does anyone have any ideas?’ Well, keep listening – our next consultation at Tenby Community Hospital answers many questions about TENS machines.

Nur: I’m Kath, and obviously we’ve got you here this morning to show you how to use our TENS machine. Do you feel comfortable just sort of telling me about how your pain started? I know, obviously, you’ve already gone over this with the doctors, but if you don’t mind just going over…

Patient 2: How it started?

Nur: I’m sure it’ll be helpful to other people, if you feel confident speaking now.

Patient 2: I don’t know what caused it. Probably just life, isn’t it? It just went like that, and that’s it.

Nur: Hmm. How long ago was this?

Patient 2: Oh, I was, must have been… well, I’m 50 now, must have been about 21 when it started. And I’ve always been on pills for it, but it just got worse and worse as I was getting older. Just getting more intense, sort of thing. And then I had the operation then.

Nur: You’ve had surgery on your back?

Patient 2: Yeah, I did a spinal fusion.

Nur: How long ago was that?

Patient 2: That was four years ago.

Nur: Right.

Patient 2: And it just didn’t make a difference.

Nur: No. You still had back pain.

Patient 2: Yeah.

Nur: So what else have you tried? Have you had injections?

Patient 2: I’ve had, yeah, injections.

Nur: Acupuncture?

Patient 2: Acupuncture, yeah.

Nur: That didn’t help either?

Patient 2: Nothing.

Nur: Nothing’s done.

Patient 2: Nothing at all.

Nur: And medication? Are you having to take that regularly, your medication?

Patient 2: Every day. I’m constantly on tablets every day. Sometimes I think to myself, ‘Should I try just one day without taking them?’ And I just can’t. It’s impossible.

Nur: No, no. So what do you say is the biggest part of being in constant pain, in terms of your… how has it affected you as a person and your family life?

Patient 2: Oh, it’s affected my whole life! I don’t do a lot anymore. My husband does everything. He does the cooking, the cleaning. He does everything, you know? He helps me when I want to get dressed and if I’m having a really bad day. You think you’ll get used to it, but you just don’t. You don’t get used to it. You think one day possibly this is going to stop. This is going to end. But you’ve got to get used to it. That’s it.

Nur: I think probably there’s more, I suppose, making adaptations, isn’t it? Trying to find other ways of coping with it.

Patient 2: Coping with it, yeah. That’s why you have got to try things like this sort of thing, because like I’m saying, if you’re out of pain – cause I don’t know what it’s like to be out of pain now – if you’re just out of pain that little bit, oh, it would be a big thing.

Nur: If you could have a goal or an aim, is there anything that you’d wish you could do better or more of?

Patient 2: I wish I could just clean up. That would be something! Just to go around with the hoover and things, you know? Like, I do try. Sometimes I try and then I’ve got to give it to him and he finishes it. You’re just living on pain. That’s it. That’s the only way I can describe it.

Nur: So when you met the doctor, did you discuss any other things, apart from – obviously the TENS machine was something you haven’t tried and you thought it was worth a try – but did he talk about longer-term strategies or management or anything?

Patient 2: I think I’ve tried everything. I don’t think there’s much else I can try.

Nur: He didn’t mention to you about a pain management program or anything like that? No? Okay. I think in the longer term, from what you’re telling me about the impact it’s having on your life, there might be ways of trying to help you manage the pain better by looking at how it’s affecting you and some of the things that we can try and get you to work with. There’s a whole program called a pain management program, where you would come along and be in a group setting and again, not everyone feels comfortable with that.

Patient 2: Oh, no, I’m not that type of person, to tell you the truth.

Nur: Yeah, but usually people have similar problems. Anyway, I’m not going to go on, but I just want to put that seed in your mind to start thinking about. You saying you’ve tried everything, but that might be a point at which you think, ‘Well, I have to look maybe beyond getting completely rid of my pain, but actually accepting that I have got pain.’ I know it’s hard for anyone to say that. But there comes a point at which we have to think, ‘Well, we can just give in and say that’s it.’ But I’m sure you don’t want to do that because you’ve said you want to be able to do things. You have got goals that you want to try and achieve and it may be only that small goal that helps you then move on and feel a bit better about things.

Patient 2: Yeah. Because I was always active all the time, like after six children, you’re on the go all the time. When I was in my late 20s and 30s, I used to go to aerobics and things like that, and I used to – because of my back – do it as a just walking sort of thing, not jumping sort of thing, but just walking it. It would just be lovely, but now I feel like I can’t do anything. It’s just taken over my life, I can honestly say.

Evans: My thanks to Kath Nur’s patient for being so open about her pain condition. Sitting in on the consultations and hearing how relationships are being built between her and the patients reinforces the words of caution we give in every edition of Airing Pain. And that is that whilst we believe the information and opinions 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.

Nur: So what we’re going to do today is… the machine I’m going to show you how to use is called a ‘TENS machine’. It’s an abbreviation for transcutaneous electrical nerve stimulation. Long word, so it’s abbreviated down to TENS. And basically what it is, is a little machine that runs from batteries that emits an electrical signal along wires, which are then attached to little sticky pads called ‘electrodes’ that stick to you. The idea is that by applying these pads on or around the area where you’ve got pain, you create a sort of stimulation that your brain, if you will, interprets as an irritation. It’s very much linked to the theory of… this gate control theory, which is the way that we think pain is transmitted through the body along the nervous mechanisms. It was sort of discovered back in the 60s. Some scientists did some work, and they came up with the idea that applying electrical current might create almost an artificial stimulation, [so] that the brain thinks there’s something going on and responds to it by releasing pain-relieving substances and also closing off this ‘gating’ mechanism.

So for some people it seems to work. Other people it doesn’t. Everyone’s quite different how they use TENS. Some people would say that they probably use it most days, that it’s become part of their everyday pain management strategy. Other people found that they tend to use it for those really bad episodes, which probably you have these flare up days when the pain goes up a notch. Some people will say ‘Well, actually, that’s when I tend to use it.’

Patient 2: My pain’s all the time. It doesn’t go up or down, it’s just constant.

Nur: Right. Okay, so it might be something that you want to use more or less every day. And is there a particular time of day that you feel is worse?

Patient 2: Mornings, mostly. When the tablet have worn off overnight and then when I try to get up in the morning. It’s pretty bad then.

Nur: So you’re finding that it’s getting going in the morning and that’s when…

Patient 2: Yeah, and all through the night. I’m twisting and turning and pain all night.

Nur: Okay, so mornings are the worst for you. But you don’t sleep very well at night.

Patient 2: No.

Nur: Unfortunately, we tend to not recommend that you use the TENS machine through the night. The reason being is that because of the way it works, that you’re not really in control of the mechanisms on the controls. What also happens is the electrode, the little sticky pad that you put on your skin, seems to peel off more in the night. They stick to bed covers. They start curling up, so it makes it a little bit more messy. It’s probably safer to not use it in the night time. Also we do suggest that if you’re going to have a break from using it, you need to have 8 hours within a 24 hour period, so night time’s a good time not to have it connected on, really.

We have to be realistic. You know that it’s not going to completely eradicate your pain. I think it’s useful as an additional treatment maybe – you know, you mentioned early that you take painkillers. It’s quite useful as an additional add on we call an ‘adjunct treatment’, as opposed to being a total – that’s all you have and there’s nothing else. And other ways of help, you know, other ways in coping – it might be that it enables you to do things a little bit more that you’ve not been able to do as comfortably – you feel better in yourself, you being a bit more active, you’re feeling a bit more on top of things… So it’s this sort of twofold buy-off from it, really. You can control the settings on it, so it’s giving you back some of the control over your pain that perhaps you feel you haven’t really got at the moment.

Patient 2: None at all.

Nur: None at all. Right, so we’re going to get started now. To start with, we would suggest you use what we call using a direct approach, where you actually apply the pads on the area where you’re actually feeling the sensation of pain. It’s all across your back I’m assuming.

Patient 2: Yeah, it is.

Nur: So we put one pad there, and then the next one we can put either horizontally or vertically connected to it or even diagonally, it doesn’t matter, because what happens is the area between the pads and underneath is the area that we’re going to target.

Patient 2: Do they have to be so much apart or anything?

Nur: No, they can be slightly nearer. You can have them within, I’d say, half an inch. If they touch each other, they do tend to pick up the negative and the positive signals and it gets a bit confused. So at least half an inch, maximum sort of six inches. What we’re going to do now is we’re going to switch the actual machine on for you. You won’t feel any sharp thing. Don’t worry.

Patient 2: That’s just what I was just waiting for.

Nur: It’s just to reassure you. I know, everyone’s waiting, tensing up there. And we’ll do it very slowly, so that the pulsing sensation will come in quite slowly and gradually. What I want you to do is to let me know, as soon as you feel something that’s not normally there, some kind of impulsing, heartbeat, pulsing sensation, whatever you want to describe it, let me know.

Patient 2: Yes, there.

Nur: Is it irritating, do you think?

Patient 2: No, not really.

Nur: Okay. The main thing is, for people, sometimes they have this preconception that if they turn it on really high and there’s really strong pulsing coming out, that it’s actually going to make a difference, that they’re actually going to control the pain better. There isn’t really any evidence to support that. There are some sort of what we call ‘prescriptions’, that certain types of pain seem to respond slightly better to different levels of the frequency settings, but because often pain is very, very… there’s often some neuropathic element to it, some nociceptive element, most people who’ve got chronic pain tend to prefer to find their own level, if you will. The good thing with TENS, as I said, is that you’re in control of it. You can use it whenever you want. There doesn’t seem to be any evidence of overdosing, of having a bit too much of it. It’s not going to do you any harm. Is that all right?

Patient 2: Yeah, that’s fine. Thank you.

Evans: Now, TENS machines vary from model to model so we won’t confuse you by going into all the various settings. But do make sure that your health professional explains the model he or she recommends thoroughly. My thanks to Kath Nur, Specialist Pain Nurse in Pembrokeshire and her patients for letting me sit in on their consultations.

And that’s the end of today’s edition of Airing Pain. If you or someone you know has benefitted from these programs and would like them to continue, then please consider making a donation to secure Airing Pain’s future. Just go to the website at painconcern.org.uk where you’ll find a Make Donation button at the bottom of the page. You can also download all the past editions from there, and if you’d like to put a question to our panel of experts or just make a comment about the program, then please do via our blog, message board, email, Facebook, Twitter, or pen and paper.

I’ll leave you with Richard, whose contribution to this program has been invaluable. Thank you.

Richard: I’ve still got my sense of humour. I’ve always had a sense of humour. Very warped sense of humour sometimes, but I’ve always had a sense of humour. There’s no point in being miserable about what you’ve got. You can be miserable inside, but you don’t necessarily have to pass it on to everybody else, if you can possibly help it.


Contributors:

  • Kathryn Nur, Specialist Pain Nurse, Hywel Dda Health Board, West Wales
  • Richard, Kathryn Nur’s patient
  • Ann Taylor, Faculty of Pain Medicine, Cardiff University.

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 How acupuncture and TENS can help relieve pain, plus, a new web service aiming to educate health professionals about pain

We take a look at the role of the pain specialist nurse in the community, eavesdropping on two consultations given by Kathryn Nur at her nurse-led clinic at Tenby Cottage Hospital, Pembrokeshire. We hear how Kath helps her patients, learning about what TENS machines are, how to use them and how they can help those in pain, how acupuncture can also help, and the importance of listening to what the patient has to say.

On the contentious issue of how little training medical students receive on pain matters – fewer hours than vets – Ann Taylor from the faculty of pain medicine at Cardiff University talks about a web service that may go some way towards redressing the imbalance.

Issues covered in this programme include: TENS, acupuncture, electro-acupuncture, web service, educating health professionals, pain specialist nurses, back pain, depression, ache, listening to patients, GPs and insomnia.


Contributors:

  • Kathryn Nur, Specialist Pain Nurse, Hywel Dda Health Board, West Wales
  • Richard, Kathryn Nur’s patient
  • Ann Taylor, Faculty of Pain Medicine, Cardiff University.

Peer Support. Join the community

“Having chronic pain is very lonely.”

Join the community

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Everything you need to know about how to live with chronic pain

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Is work good for us? We discuss working with chronic pain and the benefits system

To listen to this programme, please click here.

In the wake of the government’s introduction of the Employment and Support Allowance (ESA) which will see all people already on incapacity benefits reassessed for their ability to work by 2014, Airing Pain discusses benefit reforms as well as how work affects those living in pain and how they can stay in, or get back into, work.

Chris Main, Professor of Clinical Psychology at Keele University, and Elaine Heaver of the Bath Centre for Pain Research take us through the evidence showing the health benefits from being in work and explain how GPs now give ‘fit notes’ as well as sick notes. Paul Watson gives some advice on how to stay in work and talk to your employer and Dr Shilpa Patel talks about the barriers faced by unemployed people with chronic pain.

Issues covered in this programme include: Work, benefits, policy, welfare reform, patient concerns, phased return to work, workplace adaptations, stigma, misconceptions, accessibility, insomnia, discussing pain, barriers to the workplace and training schemes.

Paul Evans: Hello, and welcome to Airing Pain. This programme is brought to you by Pain Concern and supported by an educational grant from Napp Pharmaceuticals. I’m Paul Evans.

Shilpa Patel: People I’ve spoken to in my role as a psychologist within the NHS (National Health Service) and seeing chronic pain patients regularly, do want to go back to work and they would love to work if they could find something that would suit them and they’d be able to manage with the pain condition.

Evans: Our aim on Airing Pain is to be guided by you on the topics we cover and through our panel of experts we try and get answers to the questions you raise on our message board, mail, electronic or otherwise. So today we’re focusing on work issues for those of us with chronic pain. It’s a huge and contentious area, especially in the context of the Work Capability Assessment and Employment and Support Allowance – the ESA, which replaced a range of incapacity benefits for all new claimants back in October 2008. From October 2010 until 2014 those still receiving the older style incapacity benefits will be reassessed in their ability to work and if, in the view of the Department of Work Conventions, they’re found capable, they’ll be moved to what they describe as ‘other benefits more appropriate to their circumstances’.

Now the fear is that people who are found to be capable of work will be moved to Job Seekers Allowance, which for some people could mean a reduction of around £25 a week in their benefit.

At the outset of this programme I’d like to pass on a request for your help from the Long Term Conditions Alliance, Scotland. They’re collecting data on how the welfare reforms affect people. They’d like people who’ve already been affected, and those who are concerned about how they might be affected in the future, to tell them about their experiences. So, if that applies to you or someone you know, then we at Pain Concern will be glad to pass on your experiences. I’ll tell you how to get in touch with us at the end of the programme, so please have a pen or pencil and paper handy to take down the details.

But first the question has to be asked: is work good for us? And to answer it is Chris Maine, who’s Professor of Clinical Psychology at Keele University.

Chris Maine: There’s been some important government reviews that have come out in the last year or two which really have looked at all the evidence there is for the effect of working and of not working on people. People that are off work develop more illness and they actually die more quickly, so we know, particularly in studies of older people, that after they’ve retired, getting engaged in something – participating – is really very important to counteract the effects of changes that have come about with retirement and sometimes social isolation. And, of course, if people have got pain and they’re on their own, they’re more likely to get a bit depressed with things, so it’s really important to manage the pain rather than it managing you.

And one of the things we’re interested in doing at Keele University is looking at how physiotherapists and other healthcare professionals are dealing with concerns about work that are raised by the patients. And very often the professionals don’t feel all that well-equipped to deal with work issues. But things are changing – the new ‘fit notes’ instead of ‘sick notes’ that have come in, I think, over a period of time, are giving an important message: that work is in fact good for people.

Evans: Chris Maine of Keele University.

Elaine Heaver of the Bath Centre for Pain Research is conducting studies into these issues and specifically focusing on the rhetoric we’ve just heard that work is good for us. Now explain the difference between a ‘sick note’ and a ‘fit note’.

Elaine Heaver: The main rationale behind the fit note is that one doesn’t have to be 100% fit in order to work and that actually an earlier return to work than has been traditional can be quite beneficial for people. Also that there are very active things employers can do, such as putting in place phased return to work, or workplace adaptations like a different chair or a different desk or special mousemats, those kinds of things, or bigger changes that might need to happen.

And the idea is also to focus on capacity, not incapacity. And it is based around some very good evidence that work is good for a lot of us a lot of the time and most of the people I interviewed didn’t disagree with that, but some of the issues around the fit note that came up in our study were to do with how that is practical, particularly in a small workplace, for example, and people feeling a little bit pushed sometimes to go back to work before they were ready. And the GP now on the sick note, he or she just used to say, ‘You are fit’; ‘You aren’t fit.’ And now people may have seen these, they can either say, ‘You may be fit for some work now, taking into account the following advice’ or ‘You’re not fit’, so the language has changed quite substantially as well.

Evans: Elaine Heaver.

Now whether it’s a fit note or a sick note seems irrelevant when you are indeed in work but at the same time facing the stress of losing a job because of your condition. And that’s exactly the worry that one of our listeners has contacted us about: ‘I’ve been diagnosed with fibromyalgia and I’m worried that I’m going to lose my job. How can I stay in work?’ Well we’ve contacted leading pain expert and physiotherapist Professor Paul Watson of Leicester General Hospital on your behalf…

Paul Watson: Now this is something a lot of people face. And the first thing that anybody needs to do is actually discuss it with their employer. Often people will struggle to remain at work – they feel that, particularly in the economic climate we have at the moment, ‘The last thing I want to do is mention to my employer that I’m having a hard time because I’ll be the first one to lose my job.’ I can understand how people feel like that, but it’s always going to be very difficult to make any workplace adaptations unless you talk to your employer first. It’s also helpful to talk to somebody who understands about keeping people in work, work retention and return to work, so you need either a physiotherapist who has experience in advising people on returning to work or an occupational therapist and then, once you have people to advise you, to approach your employer.

Evans: So, having opened the topic on how work benefits us, the positives, if you like, what are the negatives? Chris Maine…

Maine: Pain can affect work in a number of ways: it can affect things that they actually do; it can affect their tolerance for sitting and maintaining postures of various sorts and, of course, if they’re not sleeping too well, they may get really tired and this may affect their concentration. Some patients, of course, will be on medicine and some medicine does have side effects, which can affect their performance or concentration and so forth.

Pain can be a barrier to people working entirely and of course on some of our rehabilitation programmes we focus particularly on the obstacles to getting back to work. Some of these are practical things, like people needing help, for example, with advice about certain types of chair or certain ways of doing their work perhaps. But a lot of it is to do with the patients themselves, the employees, and the fact that they’ve lost confidence in how to cope at work. And of course sometimes we have unsympathetic working situations with managers or colleagues that are causing difficulties and this can be an additional stress.

Evans: It doesn’t take much to adapt. It’s not even the workplace in many things, it’s adapting people’s minds to allow people to work, isn’t it?

Heaver: Absolutely, I really agree. It’s about a sort of mindset of the person, the people around them, their family, their friends, their doctor and particularly, obviously, their employees and their employers. And, again, I interviewed quite a few teachers and they tended to have good support from colleagues, because teaching is such a, sort of, vocation and such a full on kind of job that they felt people were willing to perhaps cover one lesson for them here or there, do something like that, another lady talked about a school who’d taken her off cover duty so she wasn’t having to move from place to place around the school building.

Evans: Of course in a school you can relieve teachers of playground duties, lunch duties, you can’t relieve them of a class of thirty shouting children.

Heaver: No, and one of the very simple examples I can give you where the mind-set had not been shifted in a way that was helpful to her is this particular participant had to go to the hospital every six weeks for a day and she knew that and the school knew that and they knew that they took her on, but every time she had to go to this hospital appointment she was made to fill in all of these forms and go and ask the cover supervisor and she felt she was being humbled, in a way that was not helpful to her by doing that, and as they knew the whole year in advance which day she would need to be off, that could have been organised in one fell swoop at the beginning of the year, and she just wouldn’t have felt that she had this stigma attached.

Evans: Elaine Heaver and before her, Chris Maine. Doctor Shilpa Patel is a research fellow at the University of Warwick and she’s also a health psychologist with Milton Keynes NHS Foundation Trust. Now, the subjects of her research into the relationship between those with chronic pain and work were all unemployed people.

Patel: Some people are very understanding and are very aware of chronic pain, some employers and some organisations; others, I think more it’s about the lack of understanding and the knowledge about how chronic pain affects somebody and how things like pacing activities are important during the day. So if you’ve got somebody, for example, doing an office type job, it’s important for them to, if they’ve got a back pain condition for example, regularly take a break, maybe walk around, have a stretch, it’s important to do those things but, you know, you’re there to work and sometimes that can go out the window.

I know there’s much more being done to try and increase awareness within workplaces about disabilities and things like that, so it’ll be interesting to see where we will be in, sort of, ten years time, as to see what employers are like then, but at the moment it very much depends on who your employer is and how understanding they are.

Watson: If there’s a workplace that’s causing people symptoms, then a responsible employer should actually do something about that by assessing the workplace. Because sometimes the modifications can be quite simple, that could be done. It may well be that you have to discuss changing working hours and once again, you know, that obviously has to involve the employer, the human relations department, etc. It may also be helpful getting a union rep in to advise you as well, if only to be a friend to facilitate discussions.

There is also a scheme called Access to Work in some places, where you can get help from your local Job Centre, if any specialist equipment is required, so if you need a chair – a more comfortable chair or a more adaptable chair – or if you need a change to your work environment which needs specialist equipment, then you can go and discuss that with the Access to Work people. You can access them through the job centre or through the DWP website to find out more about it.

But the very important thing is for you all to talk and discuss a way forward, for the employer, one of the healthcare practitioners and the person trying to remain in work themself to get together and discuss a management plan, and I think the sooner you do that, the better. Because what often happens is people struggle, they then start taking little bits of time off work, the employer starts getting annoyed, they start getting into disciplinary issues when really it’s a healthcare issue, so the sooner you discuss it, the better for everybody concerned.

Evans: Paul Watson. Now it seems to me that there’s a strong danger that the new rules we’re talking about put small to medium employers, SMEs, at a distinct disadvantage in comparison with larger companies. Elaine Heaver again…

Heaver: The government has to be fair and when I say ‘the government’ I mean both Labour and the coalition. They have put in place mechanisms for smaller employers to be able to access occupational health lines, for example, and there’s something called the Challenge Fund whereby an employer who needs, say, a new chair, a better chair for an employee can get 90 per cent of the cost back. But one of the things we found in our study is a lot of employers simply were not aware of these means of support, so were obviously not using them. But it did seem to be, as a broad rule of thumb, that the bigger the company, the better the chances were of finding a more suitable role for the employee, whereas smaller companies really struggled with that.

Evans: One thing some people have told me is that employers might want someone who’s registered disabled on their books for other reasons – for box-ticking, if you like – but somebody who is sick really is a bit of a burden.

Heaver: Mmm, interesting point. The sort of distinctions between the use of language about being sick and disabled and whether or not it’s useful in a politically correct sense to have a disabled person in your company, whereas if your employee is sick then the employer might shy away… And certainly, from that point of view… I went to a conference about a year ago that was designed for employers who wanted to improve the work health and wellbeing of their employees’ lives and there were a couple of sessions that were quite shocking where, for example, in one particular session, a lawyer stood up and said, ‘If somebody starts to become sick, just get rid of them, just pay them off, it will be, you know, better for you in the long-term, financially and in terms of bother.’

But actually one very big company round here had been incredibly supportive of employees, especially employees who have some experience because they recognised it’s not just a sick person, it is an actual human being that they’re dealing with. And from a business point of view they recognise that person carries a lot of experience, so there have been cases both ways, where just because somebody is sick it’s not the end of the road and that is one of the positive things I want to stress.

Evans: Elaine Heaver. You’re listening to Airing Pain, presented this week by me, Paul Evans, and brought to you by Pain Concern, the UK Charity providing information and support for people who live with pain. Now, as I’ve said, one of our aims on Airing Pain is to find answers to questions you’ve raised with us, so please do take advantage of this opportunity to connect with our experts via our message board, email and not forgetting pen and paper.

But before we continue please bear in mind that whilst 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 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.

Today we’re focusing on work issues raised by you on our message board. Now the previous listener was asking how he or she could stay in work. Another listener with neuropathic pain says: ‘I’ve been out of work for two years. How can I get back to work?’ Professor Paul Watson.

Watson: This is a related topic but also different in that it’s much more complex. If people still have contact with their employer, I think it’s important to actually discuss with their employer that they would like to come back to some form of work. I think that, once again, talking with the physiotherapist and occupational therapist, to discuss the type of work which may be possible… But you’re only really going to know what type of work is possible by actually trying it out. And therefore if you have contact with your employer, getting in touch and saying, you know, ‘I’d like to come back, are there any openings?’ and discuss the number of hours that you think that you might be able to do, say just for a couple of hours a day and then see how you go, so that would be one way.

However, unfortunately, most people who have been out of work for two years usually haven’t got a job to go back to – their job has gone or they’ve been made redundant or they’ve had to retire on ill health grounds. So the vast majority of people who’ve been out of work for two years usually haven’t got a job to go back to.

Evans: Paul Watson. A further stressor and challenge for someone with persistent pain is in trying to convince people of the full impact the illness has on their lives. For example, filling out an application for Disability Living Allowance or Employment Support Allowance can be a major cause for concern. Elaine Heaver again.

Heaver: The kinds of questions that are asked in a new work capability assessment, was a particular problem for people, because our participants with chronic pain felt these kinds of questions on these kinds of forms do not capture the experience of the illness itself. A very simple example, a lot of the chronic pain patients talked about its fluctuating nature and some of the questions, as I’m sure people will be aware, say things like, ‘can you lift a heavy bag of shopping? can you turn on a tap? can you do this? can you do that? how far can you walk?’

And people said to me, ‘Yes, I can do those things, but then I might be flat on my back for three days.’ And there isn’t space within that form to express what these activities’ impact might be on the rest of their lives. So that was a really big issue and one that we have thought about raising with the DWP and we have had some communication with them on that. They say that their advisors are trained to take into account worst case scenarios, but it’s often very difficult by the nature of written communication, as opposed to an oral interview with somebody… the form can become very problematic in that way because it’s almost too objective to capture what’s happening for people in their everyday lives.

Evans: That’s right, it’s easy for me to say to you, ‘I can do something today, and… I could do it last week, but I can’t guarantee that I can do it tomorrow.’

Heaver: Yeah, absolutely, I mean that word ‘guarantee’ is key, I think, in terms of… I started looking at chronic pain patients at work – people felt very strongly, ‘Well who is going to employ me?’ – employability was a big issue that wasn’t picked up by the government, people felt.

Evans: And that fits my own experience in the private sector too. The outcome of a process that took nearly a year from when I’d become too ill to work was that the occupational health doctor contracted by my employer concluded that my, ‘functional capability must now be deemed to be permanently impaired’ and that I was ‘permanently incapable of carrying out my role’.

So, if I were to apply for a new job suiting my experiences and capabilities, I may well be able to impress my prospective employers at the interview whilst at the same time showing no visible signs of being chronically ill. So how, in all honesty, could I accept a job where I or the employer wouldn’t know from day to day whether I’d be fit enough to turn up the following day?

Watson: There are, increasingly, a number of employers who are quite willing to take people on on a trial basis. The Department of Work and Pensions in Job Centres had tried to set up, with a number of employers, who would just take people on a short job experience. Now I know sometimes people feel that, ‘Well, I’m working for nothing.’ I know we all have mixed views about that, but I think the only way people are going to know how much they can do is actually by engaging in some type of workplace activity.

Now, there’s also things people can do at home, because if you think that you are going to have to do a job for, sort of, two or three hours a day, perhaps people can set up activities that might mimic that in the home. I know this might sound a little bit off the wall, but if you are required to, say, sit at a computer, you could start building up your sitting tolerance. So it would be that you would sit and perhaps do some work sitting down at desk or at a table, so you can go to an employer quite confidently and say, ‘Well, I can sit as long as I can get up five minutes every half an hour, I can sit at a computer for two hours, three hours’, or something like that.

If you are looking for a more physical job, perhaps you could look at doing some simple tasks around the garden or in the house so you can assess what your physical capacity is, and you can say, ‘Well I know I can pick up and lift things up to a certain weight so many times a day. I can, you know, bend and lift. I can pick these things up.’ So you get an idea of the sort of physical capacity that you have. And that sort of thing, in addition to advice from a physiotherapist or an occupational therapist can give you a little bit more idea and confidence in what you physically can do before you start applying for jobs.

Evans: Did you find any of your participants taking blame themselves for not being able to work?

Heaver: That’s a really interesting question, the sort of blame that people put on themselves. The biggest issue that came up with that was worrying about what other people think of you, because they can’t always see what’s going on for you and what’s wrong and therefore internalising some of that stigma, that certainly was a big issue and people had to work very hard. That came up not just with employers but a lot with neighbours. People were saying, you know, ‘I worry, because my neighbours know I’m off sick for six months or whatever period of time and they see me walking around town and they don’t know that a) I’m supposed to do some walking every day and b) again, it has a big impact on me and how I am the day after.’

And I remember particularly one fairly young participant being very angry because they felt that yes, she was working but at the expense of absolutely everything else in her life; she had no physical or mental energy left at all in the evenings or at the weekends, but she felt that society, by which she appeared to mean both people very close to her and very broadly – society, the media, papers, etc. – would judge her so harshly if she stopped working and tried to create a better balance for herself, it wasn’t something she was yet prepared to do.

Evans: That’s right, it’s a powerful thing, isn’t it, where our employers or neighbours or whatever, they see you working 100 per cent, but they don’t actually see or realise that 100 per cent is 100 per cent and there is nothing left at the end of the day.

Heaver: Yeah, yeah, and just little things again, you know, two… more than two people actually, really specifically talked about commuting in London on the tube and how problematic that is. And the story with this was that they would get the disabled seat because they really needed it and then would be asked to move in quite nasty ways, not even, sometimes, because somebody else wanted it, just because another passenger saw them sitting there, saw they looked physically fine, perhaps they didn’t have a stick, perhaps they just looked OK on that day, but that was a really big problem again in terms of how society was viewing people and how people were having to internalise that.

Evans: Elaine Heaver’s research is moving into a second phase. And this is where you can help.

Heaver: One of the findings from the first study was just how important it is to get employers to be really thinking about how to help people return to work or retain current workers, but if anybody out there is interested in participating in the next phase of the study, which is really focusing on employers and employees and how we can make the system better in that way, please contact me. And if anybody is an employer who’s listening to this, or if anybody has an employer that they think would be interested, we would love to interview them.

Evans: And if you can help Elaine Heaver then please contact us at Pain Concern and we’ll pass on the details. I’ll give you contact information at the end of the programme.

You’re listening to Airing Pain with me, Paul Evans, and we’re discussing issues around employment for those of us with chronic pain. So what are the barriers we set ourselves in getting back into the workplace? And if the Department of Work and Pensions is so anxious to get us there, what are they doing to help? Paul Watson, followed by Shilpa Patel…

Watson: The Department of Work and Pensions have been trying to set up schemes to help people back into work, so there are a number of training schemes available. Now I know people can be quite cynical about training schemes, because it’s just a way of keeping unemployed people entertained rather than actually being helpful, but there are a lot of new programmes being set up. The first thing is, that if people are unable to go back to the work that they had before, because it’s too strenuous or whatever, is to identify the skills that they actually have got which an employer would like.

Patel: I spoke to people that worked in the trade industry, people that were managers – there was a range of people that I spoke to – people that did lots of laborious work and to be out of work and then trying to find work related to something that you originally did but can’t do that because of your physical pain problem was quite daunting – to then go into another industry and do something else. People often found that very scary to then think, ‘I’ve got to retrain, do something else’, especially if you’ve done something for many years. So yeah, retraining and feeling, ‘Maybe I haven’t got the skills for something else’, they were all barriers to trying to get your foot back into the workplace.

Watson: I’ve worked a lot with people who are trying to get back to work and they are very negative about the skills that they have and I’ve seen this time and again where people say, ‘Well I’ve worked in a particular job for 20 years, that’s all I know and all I’ve done.’ Well, that’s not true, because when you talk to people they have got person management skills, they’ve got numeracy, literacy skills, they might have computer skills and these are things that an employer needs to know about when you’re looking for a job.

So you need to spend some time, perhaps with somebody from the job centre, writing down the skills that you have got. And that, sometimes, you need someone to coax those out of you, because people don’t readily say, ‘Well I’m good at this, I’m good at that.’ Often when you’ve lost your job you have quite a negative view of yourself and you tend to only see yourself in your previous role, so you need to sit down with somebody to identify the skills you have that an employer wants.

You can also identify the skills that you don’t have and need to work on, so these might be to do with improving people’s numeracy, improving literacy, trying to get some computer skills, etc. Now a lot of people also find that actually having a short session in voluntary work is helpful, because there are a number of things that people who have been out of work for a while have to face and one is that they don’t have anybody to give them a reference and, of course, employers always ask for a reference – ‘Well what can you do? how good is your timekeeping?’ etc. So by doing a short period of voluntary work, that has worked for some people because they have a reference from a respected person that says, ‘This person has attended, they were regularly doing x number of hours a week, they were always punctual, pleasant etc.’ and that can go quite a long way to an employer, is to have a reference.

Evans: Paul Watson.

Now before we end the programme I’d like to make an appeal on behalf of Pain Concern, the UK charity providing information and support for people, like me, who live with chronic pain. They are the driving force behind these fortnightly Airing Pain programmes. But the programmes are not just for the 7.8 million people in the UK who live with chronic pain, it’s for our families, friends, carers, supporters and also for the health professionals who wish to hear and share their views and strategies with colleagues and patients. If you’re in any of these categories and feel that you or someone you know has benefited from listening to these programmes and would like them to continue, then please consider making a donation to secure Airing Pain’s future. Just go to our website at painconcern.org.uk where you’ll find a ‘Make Donation’ button at the bottom of the page.

And don’t forget that you can still download all the previous editions of Airing Pain from the same website. If you don’t want to or can’t donate, well, that’s fine, we’d love to hear from you anyway, either to put a question to our panel of experts or just to make a comment about the programme. Either contact us through our website, blog, message board, email, facebook or twitter, or if you prefer good old-fashioned pen and paper then the address to write to is: […]

And finally, if you’re an employer who can help Elaine Heaver at the Bath Centre for Pain Research, or the Long Term Conditions Alliance Scotland, then you can also contact them through us. And we’ll make sure they receive everything. Appeal over, and I’ll leave you with one final piece of advice from Professor Paul Watson.

Watson: If you do find a job, it’s very important that you discuss returning to work with benefits advisors. The reason being is there are a number of benefits contingent on returning to work, these keep changing and I’m sure they’ll change again, so when you do go back to work, you always discuss with a benefits advisor first. They can tell you of all the sorts of schemes, to do with return to work credits, etc. etc. which are constantly changing, so you’ll have a good idea of how much better off you’re likely to be and also what happens if you are unable to sustain the job. And it’s very important that you talk to benefits advisors beforehand because they can put you in the picture, and once you’ve got that information you can start to make a much more detailed plan, so please, don’t just rush out tomorrow and if you think there’s a job going and jump into it, talk to a benefits advisor first, because they can smooth the way and make things a lot easier.


Contributors:

  • Elaine Heaver, Researcher, Bath Centre for Pain Research
  • Chris Main, Professor of Clinical Psychology, Keele University
  • Dr Shilpa Patel, Research Fellow, University of Warwick
  • Professor Paul Watson, Senior Lecturer in Pain Management and Rehabilitation, University of Leicester.

Peer Support. Join the community

“Having chronic pain is very lonely.”

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Everything you need to know about how to live with chronic pain

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In pain? Don’t understand what’s happening?

“Having someone to help you prepare for your life through pain”

Our Pain Education Sessions

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Help us to help others

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Is work good for us? We discuss working with chronic pain and the benefits system

In the wake of the government’s introduction of the Employment and Support Allowance (ESA) which will see all people already on incapacity benefits reassessed for their ability to work by 2014, Airing Pain discusses benefit reforms as well as how work affects those living in pain and how they can stay in, or get back into, work.

Chris Main, Professor of Clinical Psychology at Keele University, and Elaine Heaver of the Bath Centre for Pain Research take us through the evidence showing the health benefits from being in work and explain how GPs now give ‘fit notes’ as well as sick notes. Paul Watson gives some advice on how to stay in work and talk to your employer and Shilpa Patel talks about the barriers faced by unemployed people with chronic pain.

Issues covered in this programme include: Work, benefits, policy, welfare reform, patient concerns, phased return to work, workplace adaptations, stigma, misconceptions, accessibility, insomnia, discussing pain, barriers to the workplace and training schemes.


Contributors:

  • Elaine Heaver, Researcher, Bath Centre for Pain Research
  • Professor Chris Main, Professor of Clinical Psychology, Keele University
  • Dr Shilpa Patel, Research Fellow, University of Warwick
  • Professor Paul Watson, Senior Lecturer in Pain Management and Rehabilitation, University of Leicester.

Peer Support. Join the community

“Having chronic pain is very lonely.”

Join the community

Subscribe to Pain Matters

Everything you need to know about how to live with chronic pain

Subscribe

 

 

In pain? Don’t understand what’s happening?

“Having someone to help you prepare for your life through pain”

Our Pain Education Sessions

Fundraise for Pain Concern

Help us to help others

Fundraise

 

Getting back into exercise and improving mobility. Plus, funding for pain services, and how can we best describe pain to a health professional?

To listen to this programme, please click here.

Airing Pain visits the Frenchay Hospital Pain Clinic in Bristol where we hear from staff and patients. Paul Evans sits in on a consultation with physiotherapist Pete Gladwell and hears the advice given to one patient about how to increase her mobility and exercise without causing flare up. We learn about how to talk to your health professional and the different ways of assessing pain. Also covered is how well funded pain care is by the health services, and the patients at Frenchay tell us their stories of living with and managing pain.

Issues covered in this programme include: Exercise, mobility, pain service funding, describing pain, educating health professionals, spinal injury, back pain, vertebroplasty, physiotherapy, activity, flare-up, acupuncture, musculoskeletal, primary and secondary care, joint pain and depression.

Paul Evans: Hello and welcome to Airing Pain, a programme brought to you by Pain Concern, a UK charity that provides information and support for those of us who live with pain.

Pain Concern was awarded first prize in the 2009 NAPP Awards in Chronic Pain and, with additional funding from the Big Lottery Funds Awards For All programme and the Voluntary Action Fund Community Chest, this has enabled us to make these programmes.

I’m Paul Evans. And in today’s programme…

Rose Marriot: Many of the patients that stopped by to talk, all of them were in pain, 90 per cent of them were not aware of pain clinics, probably the same amount didn’t know how to describe their pain to their doctors and they weren’t asked.

Evans: Rose Marriot is a nursing sister at Frenchay Hospital Pain Clinic in Bristol. Her straw poll taken at a public road show event, revealed a shocking level of ignorance and what people understand about their pain conditions, their awareness of pain clinics and how to describe their pain.

Rose Marriot: So, they will go to the GP and say ‘I’ve got a bad back’ and the GP says ‘Ok then, you will take paracetamol and whatever for that bad back’. But what the patient hasn’t done is told them that they’ve got leg pain as well as the back pain and there will be different types of pains, so one pain may be addressed, the other one may be missed. I asked them about their pain, asked them to describe it and told them to go and tell their GP what they have told me. And I also, on a few occasions asked them when they saw their GP to ask if they could be referred to the pain clinic.

Evans: In this edition of Airing Pain I’ll be trying to address these areas of ignorance – ignorance which I’m not ashamed to own up to myself, even though I’ve had chronic pain for some 20 odd years.

Firstly, and I found this incredibly difficult, how do we describe our pain to a health professional, or to anybody else for that matter?

Marriot: I’d want you to tell me the nature of the pain, for example, is it burning? Is it searing? Is it sharp? Where is it? And it’s important to be able to describe where your pain is and the quality of the pain because that helps in the doctor being able to make a decision of how to treat the pain. For example, different types of drugs work on different types of pain – you know, is it there all the time? Does it come and go? Is it sharp? Is it burning? Is it aching? People have very different ways of explaining or describing their pain. Sometimes it’s good to be able to help people to suggest ways of describing their pain.

Evans: Rose Marriott, who is a nursing sister at the Pain Clinic at Frenchay Hospital here in Bristol.

Patients who attend this clinic, all have chronic pain and they’ve usually been referred by their GP unless it’s by a consultant in a different area of the hospital. Dr Cathy Stannard is one of the pain consultants here.

This is quite a big and busy pain clinic. We have six consultants working here and a large team of health professionals from different backgrounds working: we have a clinical nurse specialist; we have a team of pain psychologists; we have several pain rehabilitation physiotherapists; occupational therapists who work on the pain management programme and a specialist pain pharmacist who comes and works with us here in the clinic.

We also closely work alongside other disciplines, who come and consult here, including colleagues from neurosurgery and a team of child health specialists for young people with pain and also an addiction medicine psychiatrist for people who have a history with substance misuse and also have pain.

We see a lot of what we would describe as the usual pain conditions: neuropathic pain, diabetic neuropathy, post-herpetic neuralgia. This is a very busy regional, neurosurgical unit and we also have a large orthopaedic spinal service. And so the vast majority of our patients will have back pain and really they will be quite complex patients with complex post-surgical problems. We would see a lot of patients who’ve had one, two or often many more spinal surgical interventions and still have persisting symptoms and often we have to manage patients in conjunction with their surgeon.

So a lot of what we do is investigating and finding out if there’s new pathology, scanning and making surgical decisions alongside pain management decisions. So that’s a big chunk and that’s to do with the type of hospital that Frenchay is.

****

Margaret Howdle: I had a crushed vertebra in my spine. I had two operations in a week. I’ve got two titanium rods in my back and then I had a little space in the spinal cord so I had to have a little cage which had to come right round. You had to do it from the front. And then I had that fitted in.

Pete Gladwell: And you’ve tried a vertebroplasty – or had tried it – and that hadn’t been helpful.

Howdle: Not really.

Evans: That’s Mrs Margaret Howdle, who’s kindly agreed to me sitting in on her consultation with Pete Gladwell. He’s the physiotherapist here at the pain clinic at Frenchay hospital and we’ll be following their progress throughout the programme.

Incidentally, the vertebroplasty that they mentioned: it’s a procedure where an acrylic bone cement is injected around the damage or crumbling vertebrae in the spine and that repairs it and hopefully relieves the pain.

Now, one of our aims on Airing Pain is to find the answers to the questions you’ve raised with us, so please do take advantage of this opportunity to connect with our experts via our message board, email and not forgetting pen and paper.

This is a good time to remind you that whilst we believe information and opinions on Airing Pain are accurate, based on the best judgements available, you should always consult your health professional on any matters relating to your health and well-being. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.

Now, we’ve had a lot of questions relating to mobility, exercise and the role of the physiotherapist in pain management and we’re hoping that our eavesdropping on Mrs Howdle’s consultation with Pete Gladwell will go a long way to answering some of your questions.

Gladwell: We see people with persistent pain problems who often have a lot of impact of that pain on the rest of their lives. And the most obvious area for most of my patients is that affects their mobility, it causes all sorts of problems, it slows them down. And as a result of that they can lose some physical condition and that makes the problem even harder to manage then.

Partly I can help them by trying to find a balance of movement and rest that works for them as an individual. A number of my patients I’ll find will tend to push themselves with activities until they can’t do any more, until the pain has reached the pitch that they can’t carry on at that stage. But sometimes the recovery time then can be quite slow and then of course whilst they’re recovering, if it is a slow process of recovery, they can’t move around as much. And if it’s two or three days of recovery – or even longer sometimes – then physically they’ve lost some of their ground at that stage.

Evans: Is that what some people will describe as ‘boom and bust’?

Gladwell: I know it as boom and bust. It’s known in the trade as activity cycling as well, with that increase of activity and then decrease in activity.

Evans: So, how do you stop people ‘booming and busting’?

Gladwell: Partly it’s to find out whether they feel it’s a feature for them in their lives? Is it part of how their pain behaves? And if they recognise it, probably they’re half way to stopping it already. And then it’s trying to find some way for them to work out how much to do on a given day, so they don’t overdo it, and then have the repercussions for two or three days afterwards.

Gladwell: Ok. It’s nice to see you again, but what would you like to cover this afternoon? I don’t know if there is anything in particular?

Howdle: Well, I am having a bit of difficulty in walking Pete. Now, can I get up and show you what I mean. I seem to be as though I am stiff and when I’m walking it is so I can’t get one foot before the other. Do you see what I mean?

Gladwell: Yes, I can see that. You’re having difficulty lifting each leg as you go.

Howdle: It’s all of a sudden happened and I’ve been doing my exercises.

Gladwell: Overall, it sounds like things are a struggle at the moment.

Howdle: They are, I’m afraid. And I would like something to improve it.

Gladwell: My job’s made slightly easier here because all of my patients have met up with one of the pain consultants, so I’ve already got information about what their diagnosis is, about how long they’ve had a problem for, what treatments they’ve tried, what they’re currently trying.

So I’ll be thinking about a slightly different agenda here – about asking first of all how I might be able to help. I’m always interested to know what my patients would like from me, so that’s a little bit of agenda setting, if you like. And then to catch up with what they are doing physically and what the pattern of that physical activity in the week is. So I’d be looking to see whether there’s any signs of boom and bust in their patterns, whether they’re currently exercising… or often the people I see have tried exercising, it’s been problematic, so a lot of my time is spent on unpicking ‘what went wrong?’ And how can it be done differently.

Gladwell: You’re keeping going with exercising even though it’s difficult?

Howdle: Uh huh.

Gladwell: So, you’ve got the acupuncture to try later on?

Howdle: Yes, it usually works.

Gladwell: So the main problem you’re having at the moment with walking is being able to lift your feet? Part of that is about your posture with the changes with the surgery. It makes it harder for you to shift your balance. Part of it is about being able to balance on one leg.

Howdle: Dr Stannard said it’s the muscles.

Gladwell: Hmmm, I’ll just get you to stand on one leg for a moment. Keep yourself safe. Use the table if you need it. How does it feel to stand?

Howdle: Oh, I’m a bit hesitant.

Gladwell: Do you know why? Do you know what makes it feel difficult to do?

Howdle: I don’t know really.

Gladwell: You’re using your hands a lot to do the work, aren’t you?

Howdle: Peter I don’t think I can do it with one hand, I think you’ll be all beating me up if you do!

Gladwell: Ok, have a sit down when you’re ready. That’s given me that bit of extra information.

Howdle: I wobble a bit.

Gladwell: Yes, I was wondering about that.

Howdle: I do wobble a bit.

Gladwell: One of the challenges, if you’ve got a long term pain problem and you’re trying to work out an exercise programme, is about how much to do and how much to move, because by definition, most of the people I work with, are finding it painful to move.

So exercise may not be a comfortable process for them, but yet if they don’t move around and don’t exercise, they can get weaker and stiffer and often as the result, the pain can actually get worse by doing less. So it’s about trying to find a balance within that and part of my job is unpicking the efforts that people have made with exercise in the past.

I’m trying to work out a level that they are happy to work at and we often use something that’s called a ‘baseline’ for that. And that might be about somebody working out that they can do three repetitions of an exercise today. And they might, if they’ve got that right, be able to do three tomorrow and three the next day. But after a week or two they might be able to build up to four. And that’s a really basic part of exercise and rehabilitation, but it’s often overlooked and it’s often thought that the health expert ought to know what a patient’s baseline is, but my feeling is that the patients are better at working out their own levels and their own baselines.

I would be asking the patient how much do they feel confident to manage on a daily basis. And I think, a lot of people will want to push themselves. There’s a sense, that pushing yourself is the right thing to do. So, if I ask somebody how many of an exercise they can do, they may say ‘Well, I can do 10.’ And if I ask the question, ‘do you think you will be doing 10 tomorrow?’ Some people say: ‘hmm, I’m not sure if I can manage 10 tomorrow’. So my next question then would be: ‘How many do you think you can do today and still feel reasonably confident of doing the same tomorrow?’ And that’s getting close to what their baseline might be.

Evans: Of course the really difficult thing is that somebody who has been fit and active, you tell them ‘walk 50 yards today or 10 yards today’, when they really want to run a mile.

Gladwell: That’s a big area, isn’t there? And that’s getting into the psychology of pain management and rehabilitation really. And I suppose, everybody knows that you’ve got to start somewhere. But the challenge for that person is to hold back when they know they could do more today, but it’s actually about looking after tomorrow and tomorrow’s mobility by doing less today.

We use a range of exercises here. We have a range of stretching exercises that cover the arms, the trunk and the legs and we encourage people to do those in a slow and relaxed manner, so they’re getting control of movement. And we have a set of strengthening exercises as well that cover right the way through the body. So it’s a general exercise programme that many people will be familiar with, because at the moment there is no evidence that a specific exercise programme is any better for most of us with most chronic pain problems than a general exercise programme.

But some people do really well with some forms of exercise and that’s an individual matter. So if somebody really enjoys swimming and they do well with it, that’s going to be an important area for them to work on. Other people really enjoy walking and that’s an area that they can manage well, other people branch out into tai chi or they make a start with a gentle yoga class. It’s about that individual finding something they think they will enjoy. So for someone who wants to get back to better walking the dog, for example, then walking’s a perfect exercise for them, but they may do well to fit in a bit of strengthening and stretching work to improve their walking as well. Whereas if somebody actually wants to improve their balance, they may want to be looking at tai chi, they may be interested in other forms of movement that just challenge their balance gently, but in a safe way.

I’m fairly broad in what I think people should be thinking about with exercise. I think that’s important, because there are so many forms available these days, and so many ways in which people could explore movement. It’s nice to have that scope really.

I’m wondering about a couple of relatively easy exercises to help you with your muscles and your balance together, but you would start off in a standing position, holding on. I’ll give you a quick demonstration and the first thing is just to shift your weigh from leg to leg and then in the same position, so that you’re safe holding on, shift your weight slowly onto your toes and slowly backwards. And you’re getting two sets of muscles working there that are really important when you’re trying to shift your weight and to stand on one leg.

Howdle: And will that help the muscles in my back?

Gladwell: It will. They’re, you’re always working those muscles as you’re doing that, shifting your weight, leg to leg. How does that feel to do?

Howdle: It’s quite, it is easy.

Gladwell: Good. And do it to music?

Howdle: Yes.

Gladwell: And then very gently forwards over your toes and leaning back a little, so you’re not going up on your toes but just much more taking your weight forwards and then back.

Howdle: Do I lose… lift my toes?

Gladwell: You don’t need to for this. It’s just much more about transferring weight forwards and backwards. And as you’re doing that you’re using your trunk muscles and leg muscles together to coordinate and that might help you a little bit out when you’re trying to stand on one leg and lift to walk because all those muscles that stabilise your trunk and your legs will be toned up.

Howdle: Yeah.

****

Stannard: It’s interesting because I guess if you talk to patients in the waiting room, the perfect outcome would of course be that they would leave the service without having pain. If you examine the data for the effectiveness of pain interventions, that’s probably not going to happen. And I think most patients will have pain in the longer term, they may be supported, they may have periods where they have less pain, but they are going to have pain that’s persistent in the longer term and that reflects almost, I guess, the decision to refer the patient here in the first place.

Dr Cathy Stannard, Consultant at Frenchay Hospital here in Bristol.

Now, at the start of this edition of Airing Pain, we asked why such a high percentage of people with chronic pain were unaware of specialist pain clinics like this one? Could that be because the health professionals in primary and secondary care treat clinics like this as the end of the line for people in pain. A last chance saloon, if you like.

Stannard: I think it’s seen unhelpfully as being a last chance saloon. Particularly, actually by secondary care specialists, who will maybe operate or carry out other interventions and then feel that when they’re a bit of attempting to control the patient’s symptoms hasn’t worked, it is now pain clinic or bust. I think that’s maybe not a very helpful framework.

Talking to colleagues in primary care, they would very much feel that we would provide a useful input in helping patients understand and manage their symptoms, optimising therapy, maybe offering other interventions, but then preparing them to go back into primary care and move on with managing their pain. So, we are not really a last chance, we’re I think an important focus in helping draw strands together to support optimal management in the longer term.

If you look at the likelihood of a patient having persistent symptoms, usually most definitions of chronic pain for research purposes would be a time-based definition, for example, a patient who’s had pain for 3 months or 6 months. But, actually, the research suggests that’s the likelihood of symptoms persisting is not just based on the intensity of symptoms and not based on the duration of symptoms, but all sorts of things, like the degree to which the pain interrupts, the meaning of the pain to the patient and so on. So in a way some pains are chronic from a very early stage and I think if one can identify and recognise those groups, one can then give strategies for supporting self-management in the longer term.

And I think in a more direct impact of us seeing patients late is we’ll often see patients – and it’s a great frustration – who will have got to the point where there’re about to lose their jobs, their benefits are threatened. They will have no salary and no income and actually this is the start of doing a piece of work which should improve their quality of life and maybe get them back into the workplace, but we come in at the time when it’s all almost – not too late, it’s never too late – but it would be hopeful for that patient if they didn’t have the uncertainty of financial difficulties and so on, before they came here.

Evans: So, is this a funding issue? Surely money gained by the exchequer by keeping somebody with chronic pain in regular work could far outweigh the cost of treatment?

Stannard: Absolutely, and I think this is big picture stuff and I think this is where strategically, nationally, the pain community are trying to make policymakers understand that the economic burden of pain is heavy and complex. And I absolutely agree that to return somebody to taxpayer status very, very quickly recoups any spend I guess on providing healthcare support for that.

But we have to be realistic in the environment we work with. And in our own service we are subject, as are all other services across the local area, to having to make efficiency savings and the need to reduce spend by reducing the number of patients that come to secondary care. It’s going to have an impact on us and on patients. And I guess the challenge is to make the impact on patients of that type of service reconfiguration, minimal, and to support interventions, if you like, in primary care, which can give the patient the same sort of support in moving on with things as we would give here. And that should be possible to do but it’s about thinking about things in a different way.

But I do very much agree that there needs to be, across social care, Department for Work and Pensions, all the sorts of impacts of somebody having, living with chronic pain on them and their carers and their family and their work… the financial equation is very complicated. And I think we are a little bit hampered. We suspect strongly that bringing somebody to a pain service and helping them function optimally with their symptoms would have those sorts of benefits in terms of getting people back to work or doing what they want to do, but we don’t have those financial, if you like, cost effectiveness data, I think because, because it’s quite a complex thing to work out.

So we can say that we think it’s a good idea but I think there’s a need to collect those data, there is a start being made on collecting those types of data on the cost effectiveness of pain services, but we don’t have those data yet.

****

Ronn Watt: I’ve had pain for the last 25 years. You can’t allow it, for it to win, you’ve got to win, not the pain.

Evans: Ron Watt is a patient at the Pain Clinic at Bristol’s Frenchay Hospital.

Watt: Pains are twofold: one of them is where I’ve had pain in all my joints and all of the muscles in the body. That is tied in with long standing chest disease which I have had, actually, since childhood.

Evans: Twenty-five years is a long time to have pain. How has it impacted on your life?

Watt: Oh, I think a great deal. You’ll have to ask my wife that.

Mrs Watt: I think depression as a result of not being able to do things because it hurts to do it, not having an answer, not having a treatment for this. It’s something you’ve just got to learn to live with and that’s very hard, especially when you’ve worked within the NHS, as he did, and nobody can come up with any answers. So, it impacts on our lives, we tend not to go places, because he can’t, because he’s in too much pain. I tend to do a lot of the things on my own, like gardening and housework because a) his chest disease is such that he cannot do these things, but also the pain prevents him from doing it.

Evans: Those are the practical things that you can’t do, how does it impact on you mentally?

Mrs Watt: I get very angry and he knows that. And I also was a nurse, so therefore I should know better. But I’m sorry, when you are at home, you’ve given everything to the outside world and when you are at home, suddenly everything is annoying and I get quite cross about it and he knows I do, unfortunately. It’s very difficult to hide. When you’ve banked on going somewhere or you’ve been invited somewhere and you can’t go, because he’s just not fit to go.

Evans: How’s it impacted on you mentally?

Watt: Anger. I get it at myself, because I cannot do what I want to do, not at the outside world. I think it’s very, very easy to ask yourself ‘Why me?’ And of course I always say ‘Why not? What makes you so special?’

Evans: Are there any positives?

Watt: Oh yes! Gosh, I’m alive, what more do you want?

Mrs Watt: No, there are positives, on the good days we do everything together and therefore we go out.

Watt: Yes, I have a wife. She is my best friend. Of course there are positives. We have a nice house, we’ve got a nice car, nice family. Loads of positives! And that’s what you always have to look for, you’ve got to look for those, because it’s very, very easy to think ‘Oh dear, why me?’ And you know, the glass is always half empty – it is not it’s half full. It’s always gonna be like that.

****

Howdle: So you want me to try to it with one hand?

Gladwell: Well, when you’re ready, but I’m not quite sure you’re ready yet.

Howdle: No, I’m a bit wobbly.

Gladwell: Hmm, you are and if you practise and the exercise gets too wobbly, you don’t actually get better at doing the exercise.

Howdle: No.

Gladwell: That’s one of the things about balance exercises. That when you’re trying to build up your coordination, if you push yourself too much and try to wean off support too much with your hands, the exercise just gets wobbly.

Howdle: I have been going upstairs more, you know. I think, ‘well, I’ll just go upstairs twice’, then I go up and down, but coming down, that is still a bit difficult.

Gladwell: Do you go down facing forwards or facing the stairs?

Howdle: Yes, I go down facing forwards. Should I try doing it backwards?

Gladwell: Do you know about that version?

Howdle: No.

Gladwell: For some people, they will find it easier, it’s a very individual thing really.

Howdle: The only thing about that, I would be frightened of not putting my foot on the stairs.

Gladwell: Yes, that’s the trick. That, if that’s an issue, you’re better facing forwards.

I can offer a range of things, but there are certain things that I can’t do. So, in terms of managing boom and bust, as we’ve talked about, that’s one of my areas. I can help people with exercise; I can help people with goal-setting; I can help them to manage any disruption to their sleep because of pain; I can help them to learn basic relaxation techniques that help with muscle spasm and help with sleep; I can offer advice about mobility aids; I can’t get rid of the pain for the vast majority of my patients and, of course, that’s what everyone wants.

Howdle: Pete if this is where I am, it’s difficult. I would have to have you to help me, because I don’t think I dare do it. I can get you to there.

Gladwell: Ok. Could I ask you for a favour, could you turn the chair around a little bit? Sometimes with exercise it’s about adapting it and making it work in a way that works for you at your current level. So that’s… now, I’ll just get you as you were with one hand on the table and this should, if you turn towards me, give you a space to step forwards and back in, but well supported. Do you get a sense of how this might help?

Howdle: Yes, I do because I can feel it. I can feel it in my back.

Gladwell: Well, good luck with those and we will catch up, it’ll probably be in the New Year.

Howdle: Yes, right. Thank you, Pete.

Evans: My thanks to Mrs Margaret Howdle for letting me sit in on her consultation with Pete Gladwell. I hope that some of the questions you’ve put to us, considering exercise, physiotherapy and pain clinics have been answered in this programme from Frenchay Hospital in Bristol. And we’ll be visiting other pain clinics around the UK in future programmes. But in the meantime if you want to put a question to our panel of experts, or just make a comment about the programme, then please do via our blog, message board, email, Facebook or Twitter.

In the next programme, we’ll be looking at work issue for those of us in pain. Is work good for us? And for those of us who are unemployed, how do we get back into the workplace when our condition might not make us the most attractive prospect to a new employer.

But, until then…

Gladwell: Anybody listening to this will know that long term pain throws a spanner in the works – it creates chaos. And when somebody starts to get things ticking over again, that’s a good part of my job.

Marriot: One of the things that does give me a lot of pleasure is the end of an acupuncture course. We’ve had quite a lot of patients that have considerably improved with their pain and it’s enabled them to move on and go back to work, do the things that we want them to be able to do after it. But I think the best thing about the job is being there for people – letting them know that we understand that they are in pain and are there to try and help them. A perfect outcome I think here would be someone who has pain which is tolerable, which interrupts what they want to do to a minimal degree, and that we would support patients in understanding and managing their pain, so that they could achieve the goals that they want to achieve.

Howdle: Well I’ve got to say that everybody at the pain clinic has been most helpful – from Dr Stannard, to my acupuncture and to Pete, even the girls on the desk – they have been so helpful. And it’s lovely to see a kind word and a smile. It makes all the difference.

Watt: It’s very, very easy to think ‘Oh dear, why me?’ And you know, the glass is always half empty. It is not, it’s half full. It’s always gonna be like that.


Contributors:

  • Dr Cathy Stannard, Pain Specialist, Frenchay Hospital Pain Clinic, Bristol
  • Dr Pete Gladwell, Physiotherapist, Frenchay Hospital Pain Clinic, Bristol
  • Rose Marriot, Pain Nurse, Frenchay Hospital Pain Clinic, Bristol
  • Ron Watt and Mrs Watt, Patient and wife, Frenchay Hospital Pain Clinic, Bristol
  • Mrs Margaret Howdle, Patient, Frenchay Hospital Pain Clinic, Bristol.

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Getting back into exercise and improving mobility. Plus, funding for pain services, and how can we best describe pain to a health professional?

Airing Pain visits the Frenchay Hospital Pain Clinic in Bristol where we hear from staff and patients. Paul Evans sits in on a consultation with physiotherapist Pete Gladwell and hears the advice given to one patient about how to increase her mobility and exercise without causing flare up. We learn about how to talk to your health professional and the different ways of assessing pain. Also covered is how well funded Pain Care is by the health services, and the patients at Frenchay tell us their stories of living with and managing pain.

Issues covered in this programme include: Exercise, mobility, pain service funding, describing pain, educating health professionals, spinal injury, back pain, vertebroplasty, physiotherapy, activity, flare-up, acupuncture, musculoskeletal, primary and secondary care, joint pain and depression.


Contributors:

  • Dr Cathy Stannard, Pain Specialist, Frenchay Hospital Pain Clinic, Bristol
  • Pete Gladwell, Physiotherapist, Frenchay Hospital Pain Clinic, Bristol
  • Sister Rose Marriot, Pain Nurse, Frenchay Hospital Pain Clinic, Bristol
  • Ron Watt, Patient, Frenchay Hospital Pain Clinic, Bristol
  • Mrs Margaret Howdle, Patient, Frenchay Hospital Pain Clinic, Bristol.

Peer Support. Join the community

“Having chronic pain is very lonely.”

Join the community

Subscribe to Pain Matters

Everything you need to know about how to live with chronic pain

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In pain? Don’t understand what’s happening?

“Having someone to help you prepare for your life through pain”

Our Pain Education Sessions

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Help us to help others

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How pacing can help people with pain regain control, plus arthritis myth-busting, the future of pain management in the UK and a Q&A session on pain relief

Pacing is the thing that makes the most difference to his patients’ lives, says David Laird, Consultant in Anaesthesia and Pain Management in County Durham. We hear about how pacing allows people to build up slowly to doing more, and Pete Moore describes getting his life back on track and becoming a patient expert on pain management.

Also in the programme: Dr David Walsh provides information about the different forms of arthritis and the treatments available and Dr Paul Johnson and Nia Taylor set out some of the opportunities and challenges facing pain services over the next few years. In our Q&A session, specialist nurse Ruth Day answers your questions on painkillers.

Issues covered in this programme include: Arthritis, pacing, misconceptions, painkillers, back pain, educating health professionals, paracetamol, codeine, TENS, flare-up, side effects, osteoarthritis, rheumatoid arthritis, joint pain, pain service cuts, policy and economics.


Contributors:

  • Dr Martin Johnson
  • Ruth Day, Pain Nurse, Torbay: (Q&A)
  • Nia Taylor
  • Valerie Conway
  • Dr David Laird, Consultant in Anaesthesia and Pain Management
  • Dr David Walsh
  • Pete Moore, Creator of the Pain Toolkit.

Peer Support. Join the community

“Having chronic pain is very lonely.”

Join the community

Subscribe to Pain Matters

Everything you need to know about how to live with chronic pain

Subscribe

 

 

In pain? Don’t understand what’s happening?

“Having someone to help you prepare for your life through pain”

Our Pain Education Sessions

Fundraise for Pain Concern

Help us to help others

Fundraise

 

How pacing can help people with pain regain control, plus arthritis myth-busting, the future of pain management in the UK and a Q&A session on pain relief.  

To listen to the programme, please click here.

Pacing is the thing that makes the most difference to his patients’ lives, says David Laird, Consultant in Anaesthesia and Pain Management in County Durham. We hear about how pacing allows people to build up slowly to doing more, and Pete Moore describes getting his life back on track and becoming a patient expert on pain management.  

Also in the programme: Dr David Walsh provides information about the different forms of arthritis and the treatments available and Dr Paul Johnson and Nia Taylor set out some of the opportunities and challenges facing pain services over the next few years. In our Q&A session, specialist nurse Ruth Day answers your questions on painkillers.  

Issues covered in this programme include: Arthritis, pacing, misconceptions, painkillers, back pain, educating health professionals, paracetamol, codeine, TENS, flare-up, side effects, osteoarthritis, rheumatoid arthritis, joint pain, pain service cuts, policy and economics. 

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 who live with pain. Pain Concern was awarded first prize in the 2009 NAP awards in chronic pain. And with additional funding from the Big Lottery Funds Awards for All programme and the Voluntary Action Fund Community Chest, this has enabled us to make these programmes.  

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

Martin Johnson: It’s been estimated that £120 billion is spent, from UK PLC, on chronic low back pain. And yet still pain is not a priority, why?  

David Walsh: It’s commonly thought that arthritis is a condition of old people, that’s not true.  

Nia Taylor: A lot of doctors, unfortunately, think that they can look after someone with pain themselves, and if it’s a complex and long term pain problem, actually that’s no longer appropriate.  

Evans: We’ll be addressing all these issues later on in the programme. But each fortnight on Airing Pain we look at the topics that affect us. The coping mechanisms, medical interventions and therapies that might help us regain control of our lives. And one subject that’s been mentioned over and over again is pacing. It’s a simple concept, but if you’re like me, it takes practice to achieve. So today we’re going to look at it in greater depth. Here’s Dr David Laird, who’s a consultant in pain medicine in Durham.  

David Laird: For general day to day work on a long term basis, pacing is what patients have told me makes the biggest difference, most consistently. And pacing involves changing activity, if you’re walking you stop and rest, if you’re standing you change your posture, if sitting you move before you become too stiff. But the key to pacing is actually making the changes before the pain, and the muscles spasm that comes with that pain becomes apparent. And that means that it has to be done on a queue, it has to be done when the ads change on the TV, when the music changes on the radio, or when a buzzer goes off in the pocket saying ten minutes, or twenty minutes is up, rather than wait until the back starts to ache or a task is necessarily finished.   

Some of my patients have said that they do things such as divide the ironing into two baskets or three baskets, so they can do one basket and finish a task and then stop and change. And I think one of the main reasons why people who are in pain have difficulty pacing is that on a good day we want to do things and the result of that is that we push and over-push and then we pay the cost. And the next two days, three days, we’re wiped out, we’re frustrated and everything builds up again.   

And I’ve talked to people who are athletes and how they train is not by doing a ten-mile run one day a week and nothing for the next six days to recover and then another ten-mile run. They do a little and they do it often. And by doing that they build up their stamina, they build up their strength, because muscles start working together and they have a sense of achievement.   

But that takes discipline, it takes the ability to have a long term view, that in three months I’m going to slowly climb this ladder, where I start at the bottom doing a little and often, but each week I do a little more and often. There’s a Tanzanian proverb that says ‘little by little, a little becomes a lot’ and that is so relevant and it’s more consistent. It can give us hope. And patients have taught me that has enabled them to achieve, to be more consistent.   

And, yes, there are days when, for that special occasion, you do too much. For the shopping trip, or with somebody who you haven’t seen for a long time, or for a wedding, or for an extraordinary occasion, where you know that you’re going to push yourself and you’ll mark off in the diary the next two days because they’re going to be diminished in what you can do and how you’re feeling and what you’re thinking, in your muscle pain.  

A lot of people seem to be aware of what pacing is, when you talk to them, but it’s not emphasised. And when I teach medical students, they have never heard of it, and whenever I do teaching with nurses and GPs people acknowledge it but I think we have to do more than acknowledge it, it’s a skill.  

Evans: You’re listening to Airing Pain presented this week by me, Paul Evans, and brought to you by Pain Concern, a UK charity providing information and support for people who live with pain.  

Now, one of our aims on Airing Pain is to find answers to questions you’ve raised with us, so do take advantage of this opportunity to connect with our experts via our message board, email and not forgetting pen and paper. I’ll give you the address later in the programme.  

But before we continue, please bear in mind that whilst 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 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.  

With that in mind, our first questioner writes, ‘I live with constant pain and have been prescribed paracetamol, but it doesn’t work and tramadol makes me  feel like a zombie. I’ve tried to explain this to my doctors, but they don’t give me anything positive. What can I do?’  

Well answering your questions is Ruth Day, she’s a pain nurse at Torbay District General Hospital.  

Ruth Day: Some of the stronger painkillers, or analgesics as doctors sometimes call them, can have that effect of making you feel a bit like a zombie. But the idea of combining paracetamol with another painkiller is really quite an effective way of managing pain. I think what it might be worth doing is going back to your doctor and seeing if there is something that’s a little less strong than the tramadol.   

I don’t know if you’ve tried codeine in the past, but codeine and paracetamol combined together is a very useful combination and you can get the codeine in different strengths. So some people have more codeine than others and it’s often the codeine that might make you feel a bit zombieish – a bit like the tramadol might do as well.   

The other thing that you might try, if you’re able to, is that you can combine paracetamol with an anti-inflammatory drug, something like Neurofen, I suppose, is one of the most common ones. Some people aren’t able to take anti-inflammatory drugs, but again that’s a very nice and useful combination of drugs, to have the paracetamol and the anti-inflammatory together. So I think maybe armed with that information you’d feel a bit more confident about going back to your GP and asking about that problem. I hope you manage to sort it out.  

Evans: Thanks for that, and here’s another question relating to the suitability of paracetamol. ‘My mother is eighty-eight years old, living with two hip replacements since  

1983. She now has osteoarthritis in the spine and knees. For the past two years she’s been taking concentrated cherry juice, which has left her pain free, however, recently she’s had a flare up and her GP has suggested paracetamol, which at first seemed to work. Now she’s still in pain, even with the paracetamol, so she’s wondering what to take without bad side effects.’  

Day: Well first of all I’m delighted that your mother has found that the cherry juice has been helpful for her pain and I’m sorry to hear that’s she’s had this flare up. Paracetamol is helpful and I think even though your mum feels that it’s not controlling her pain completely, I think it’s worth carrying on and taking that. I understand her worries about taking other painkillers, because they do, all drugs and medications have side effects and sometimes those can be really troublesome.   

What I think your mum might think about is whether she might use some things other than tablets to help with her pain, and I wondered whether she found things like a heat pad might be useful. Often people find that quite comforting, particularly with back pain. And you can get these pads which you can plug in and they run off the electricity and they’re fairly flexible so you could have it on your back and you could also bend it so it goes across your knee to provide some pain relief for her knees as well.   

So that might be quite useful. And also thinking about heat things, lots of people find a warm bath or a shower gives some relief, so that might be something too that your mother might be able to build into her day.  

 I think it’s really important that she keeps moving and moves her joints as much as she possibly can. That movement of the joints keeps the fluid in the joints working, so that they’re a little bit less painful, or crunchy sometimes it feels when you move them. So that would be a good thing to encourage her to keep up and about and moving. And maybe she might find some massage, or rubbing in some creams, may well help as well and that helps both with keeping the joint moving and also the warmth that you get from massaging something.  

You might also want to look at using a TENS machine. They’re not suitable for everybody but you would be able to find out about that, so it might be exploring that. And again, it’s not putting any medicines in, so there aren’t major side effects with using that.   

I think if those more straightforward things don’t help it’s worth asking your GP to see if there are some other tablets, which perhaps aren’t quite as strong and may just help and work with the paracetamol to enable your mum to get a bit more comfortable. So I hope some of those things will be helpful.  

Evans: Yes, I hope so too. And thanks to Ruth Day, who has been answering your questions today.  

And we’ll stay with the subject of arthritis because according to Arthritis Research UK a staggering ten million adults consult their GPs each year with arthritis related conditions.  

David Walsh is Associate Professor in Rheumatology at the University of Nottingham. He’s also director of the Arthritis Research UK Pain Centre.  

David Walsh: Arthritis is an overriding term used to describe a whole series of conditions that affect the joints, ranging from the commonest form of arthritis – osteoarthritis – which I tend to think of as a kind of repair response in the joints, through to conditions such as rheumatoid arthritis, which are inflammatory conditions which erode and damage the joints. Osteoarthritis probably affects everybody at some stage in their life. Conditions such as rheumatoid arthritis are much less common but are very important because they cause a lot of problems. So, maybe two percent of the population in the UK may have rheumatoid arthritis. And then there are some other forms of arthritis which are much rarer than that.  

One of the factors that’s common across all forms of arthritis is that they cause pain. It’s commonly thought that arthritis is a condition of old people, that’s not true. It is true to the extent that any condition that currently doesn’t have a cure is going to be more common in older people, because we collect things as we go through life, but arthritis can affect people for the first time at any age. So children can have arthritis and old people can have arthritis.  

I get frustrated because often I hear people talking about osteoarthritis and back pain as being ‘degenerative conditions’. ‘Degeneration’ to me means ‘wear and tear’, like a car. The more miles you do in a car the more bits wear out, until you can’t replace them anymore and you get rid of it. There’s a big difference between things like back pain and a car – a back is not wearing out, what’s happening is that it’s constantly repairing itself and the changes that we see on the x-rays are a consequence of that repair process.   

So, in fact, people are not wearing their bones out, people with back pain don’t have thinner bones, they’ve actually got more bone, you see extra bits of bone. So these conditions, they’re not degenerative in the sense of a car wearing out. And I think that’s important because it changes the way that you look at it. For your body to repair itself as well as it can do it needs to be used, which is the exact opposite of wear and tear. The more you use a car, the more it wears out, by keeping using your body it repairs itself better. And secondly if it was wear and tear, then the older you got the worse it would get, but in fact that’s not what we find.   

Evans: So what treatments are available? David Walsh again:  

Walsh: Pain is the commonest symptom that people describe. And yet a lot of treatments for arthritis have focused, rather than on pain, on other things such as whether the arthritis is damaging the joints. So there is some fantastic treatments for rheumatoid arthritis, which have been developed over the past few years, which have major impact on the damage that happens to the joints. But I am slightly concerned that they’ve distracted a little bit from the main problem that people present with in the clinic, which is their pain. And unfortunately I don’t think the treatments for pain have advanced at the same pace as the treatments for the inflammation.  

Pain is complex – it’s not a single entity. Somebody with arthritis doesn’t just have a pain, the pain that you get in your knee when you’re lying down in bed at night that’s stopping you going to sleep is not the same pain that you have when you’re standing up and trying to walk on it. There are different pains and these different pains are from different mechanisms and the different treatments we have target those different mechanisms.   

And yet we have a very incomplete understanding as to how we should use those treatments for the individual’s pain. But also, there are a lot of parts in the pain pathway which we are currently not able to target with tablets. There are new treatments coming through that will help target those. So over the next five to ten years I would anticipate there being a much broader spectrum of medications available for arthritis than there is at the moment. That again means that we’ll need to be much clearer about who will get benefit from which treatment and how you can select and use them to the best effect.   

So that’s just the tablets, but the same principles I think apply to all the other approaches that we have for arthritis pain, including exercise type treatments, weight reduction for knee osteoarthritis, psychological approaches – there are several different psychological approaches. And again, who will benefit from those treatments and how we can target those treatments to get the best benefit out of them is an important question for the future.  

Evans: In the last edition of Airing Pain we visited the Powys Chronic Fatigue and Pain  

Management Centre – and don’t forget that you can still download that, and all the previous editions of Airing Pain from www.painconcern.org.uk and you can obtain copies from Pain Concern itself – we spoke to patients, or should I say ‘graduates’, who were just completing the three-week residential programme and the overriding story was one of success to the point of elation. Criticism, however, was levelled not at the pain management programme itself, but at how long it had taken them to be referred there, lack of GP knowledge about their pain conditions and the role of primary and community pain management.  

Now I’m very aware that this was just a straw poll of opinion but:  

Martin Johnson: A survey from Action on Pain said that 93% of patients don’t know that pain clinics exist, that’s very frightening from a chronic pain population.  

Evans: Martin Johnson’s Chairman of the Royal College of General Practitioners Pain  

Management Group. He’s actively involved in the politics and future of pain management. And Airing Pain met up with him and other speakers in this programme a few weeks ago, at the 2010 voluntary sector seminar for the British Pain Society.  

Johnson: Statistics abound about chronic pain management and the sort of problems that occurs. It’s been estimated, for example, that £120 billion is spent from UK PLC on chronic low back pain, and yet still pain is not a priority. Why? There’s lots of theories, pain is not a disease in its own right, it’s just a symptom, that’s the one that’s always quoted. Or the other thing that’s always quoted is the fact that people don’t die of pain, but now we know from the research from Torrance and Blair Smith that people do die of pain: they die quicker when they have chronic pain, their brain changes. Their brain shrinks by up to 20% when they’ve had chronic pain for up to three months, from the work from Irene Tracey. We need to be able to link this into GPs, into GP training, to make it a higher priority.  

Evans: So how could this be achieved and what would it mean for the patients? Martin Johnson again:  

Johnson: What that would mean would be over a three-year period that pain will be one of the major priorities for the Royal College of General Practitioners: they will appoint a national clinical champion that will cover all four UK countries and that will increase education; it will get representatives from the Department of Health; it will increase the knowledge database and also increase guideline production.   

The other contentious question at the moment is how will pain services be delivered within the new environment. I think nobody knows – I don’t think it will matter too much at the GP commissioning level as long as we get the infrastructure right and give them the right guidelines and the right tools to use. GP commissioning groups will be quite happy to adopt anything that’s given to them because they’re going to be desperate for models given to them. So I don’t think we need to worry too much about the GP consortiums, apart from the possibility of variability of care and possibly increasing the possibility of postcode lottery.  

Evans: Now, one of Martin Johnson’s worries is that a development by Sheffield PCT, or primary care trust, could have wider implications:  

Johnson: Sheffield PCT have decided, due to finance, to make most procedures within pain clinics, procedures of limited clinical value, which means things like acupuncture, it means facet joint injections, it means epidurals; in fact, nearly everything apart from pain management programmes, talking to patients and giving drugs out, have now been put on the limited list. This is a very worrying development and something that the British Pain Society is going to be tackling head on.  

Evans: That was Martin Johnson, Chair of the Royal College of General Practitioners Pain Management Group.  

Nia Taylor is Chair of the Patient Liaison Committee for the British Pain Society:  

Nia Taylor: The thing about pain management services at the moment is that they’re so patchy, so inconsistent. So you will get some really brilliant ones and some non-existent pain services, somewhere it’s just one GP in a whole area, or one anaesthetist working as a main doctor in a hospital.   

And the other thing about pain services that is such a problem is that people don’t know that they exist and where they are and how they can get themselves referred to a pain service. So a lot of doctors, unfortunately, think that they can look after someone with pain themselves and if it’s a complex and long term pain problem actually that’s no longer appropriate. The GP should be asking for somebody, a team, preferably, a multi disciplinary team of people, to look after that person and give them advice and information that they need and treatment that they need.  

It’s a big worry really, that the sort of community pain services that we would like to see happening, it’s going to be even more difficult in the current economic climate and with the cuts and with GP commissioning to see that happen. But the idea should be, I believe, that, where these services work well, they can actually be very cost effective, because you’re avoiding people having to go into hospital and see a consultant and that’s really expensive.   

So the way I see it working, is that people should be able to go to a community pain service before they go to the hospital or maybe instead of. And I would like to see people being able to self-refer to one of those community pain services, maybe that won’t happen, maybe that’s too much to hope for, that would be they would just have a number and phone up and say, I would like to come and see you. The alternative is that their GP refers them, but obviously then the GP has got to know that it’s there. That’s how I see it, the community pain service is sitting between the GP and the hospital services, either replacing them or acting alongside them I suppose.  

Evans: So how could the community-based approach work in practice? Well, Val Conway is a consultant chronic pain nurse, Clinical Lead for Chronic Pain Community Services in East Kent, where they’ve been working with such a model.  

Val Conway:  The model that we have developed in primary care is very different to the model that is delivered in acute hospitals. We don’t feel that it’s particularly helpful to deliver a hospital model in the community services: the models are very different and there is a place for both models to run alongside each other in a seamless fashion.  

The revolutionary part of our model, which we started at the beginning of the year, was to introduce a single point of access. This means that when a patient is referred to pain services in East Kent by their GP, their letter is triaged, either by myself or my colleagues, or by one of the hospital pain consultants. And depending on what information is given in that letter as to where that patient then receives their pain management. If a patient sees their GP and they had an epidural last year, or facet joint injections, which were particularly successful, then when we triage that letter, the patient will be seen in the hospital pain clinic. If the letter shows that the patient needs more of a long term support, medicines management type approach, then they will be given an appointment in primary care, community services. This has meant that patients have a minimal wait and they are seen by the right person at the right time.  

Evans: Consultant chronic pain nurse Val Conway. And the term ‘triage’ simply refers to the initial assessment of the patient’s condition to determine the next appropriate stage in its management.  

You’re listening to Airing Pain presented by me, Paul Evans. And we’re discussing the future and development of community pain management programmes. Here’s the patient’s view:  

‘My darkest day was in 1994 when it was the 31st of December and it’s my birthday and some friends came round and said, ‘Pete come out, it’s your birthday, it’s New Year’s night’. And I said ‘I just can’t come out, the pain is so horrific today’. And I’d had my full quota of medication that day and I just couldn’t stay upright. So there I was on my birthday  Year’s night, laying on the floor looking at the TV and I actually contemplated topping myself.  

I thought to myself, ‘is this what my life has come to now, you know, that I can’t even do the simple things I do on my birthday?’  

Evans: Well Pete Moore got through the lowest day of his life and went on to a pain management programme at Saint Thomas Hospital in London. He’s now an instructor for the Expert Patient Programme in England.  

Pete Moore: I think first you have to define what a pain management programme is – is it something run by a healthcare professional, or is it something like the Expert Patient  

Programme where it’s delivered by people with health conditions themselves? But there’s another type of course now called ‘co-created health’, where the courses are actually delivered by a healthcare professional, alongside a layperson.   

So there’s lots of innovative work actually going on now within the community, where people can actually get the help and support that they need to actually become active self managers. And I use the word ‘active’ because a lot of people, when they go down the doctor shopping route, or the therapy shopping, where they’re expecting the doctor, or the healthcare professional to give them something, or do something to them so that it controls their pain.   

And I think, especially with the Expert Patient Programme, or the Arthritis Care programme, because they’re delivered in the community, by people with the health conditions or the pain themselves they can actually become more effective. And I always remember a physio actually giving me a call once – and someone had been on one of our courses, the Expert Patient Programme, the persistent pain programme, and was actually going on to an NHS pain management programme – and he rung me up and said ‘send me more like that’, because they had learned some simple skills which enabled them to support them along the way on the PMP programme.  

Pain management isn’t difficult, but what a lot of people do is do complicate it. The actual concept of it is quite simple really. With pain management you don’t let the pain be your guide. So say, for example, you sit and then you wait for your pain to start and then you say ‘I’d better get up and move now’, well, pain management is the opposite to that – it’s actually getting up and moving before your pain starts. I mean it’s not rocket science – it’s pretty much like a Noddy guide really.  

And I’m also looking at the future now, because I think where people have to go to somewhere to attend a course, what about those people that may not be into groups, they’re not group people. Perhaps they hated school and they think, ‘I’ve got to go back and sit in a group again. I don’t want to do that.’ So it’s about offering them other alternatives, so pain management on a one-to-one basis, it may be costly, but it could be effective.   

What about where they attend a pain management programme online? Young people these days, are they going to pick up a book and learn pain management? I pretty much doubt it. What they are more likely to do is look on the internet for pain management skills. But what about going one step further, putting pain management onto iPods.   

As I said, the pain management message is a very simple message, it’s how we switch on that persons pain management light, to actually engage with that concept, to actually learn how to pace themselves. They find that stretching exercising isn’t fearful, but in actual fact it can be fun.  

Evans: That’s Pete Moore, of the Expert Patient Programme in England. And his new information and self-management handbook for patients with persistent pain was launched this month. It’s freely available on the Pain Toolkit website, along with other useful information about managing your pain. And that’s at paintoolkit.org. We’ll be taking a closer look at the Expert Patient Programme in a future edition of Airing Pain.  

And finally, if you’d like to put a question to our panel of experts, or just make a comment about the programme, then please do so via our blog, message board, email, Facebook or Twitter. The address to write to, as promised earlier, is Pain Concern, Unit 1-3, 62-66 Newcraighall Road, Fort Kinnaird, Edinburgh, EH15 3HS, and all this information is on our website at painconcern.org.uk. The website is a one stop resource, to get further information about the programme, including a glossary of the main medical terms used, and to download this and all previous editions of  Airing Pain, along with a host of information on how to manage your pain.  

In the next edition we’ll be looking at issues arising from MSP Margo MacDonald’s Assisted  

Suicide Bill in the Scottish Parliament. But for now I’ll leave you with some words of simple wisdom from Dr David Laird:  

Laird: I sometimes ask patients, if I wanted to run ten miles and I tried it at the weekend and was really rather exhausted and it’s now Thursday, what advice would you give me? And patients have no difficulty telling me what to do: to do less and to do it more often. So everybody I’ve encountered has got that little voice inside their head that’s very good at giving advice, but I think we can turn that around and we can even use the little voice to write a letter to the imaginary person and then we can read our own advice for ourselves. And that’s better, I think, than it coming from a doctor.   

But if you find it helps, tell your doctor it helps, because then maybe they’ll pass it on, they’ll learn from you and then they can help others. And that is very empowering for you – knowing that you have helped others.  

Contributors  

  • Dr Martin Johnson  
  • Ruth Day, Pain Nurse, Torbay: (Q&A)  
  • Nia Taylor  
  • Val Conway  
  • Dr David Laird, Consultant in Anaesthesia and Pain Management  
  • Dr David Walsh  
  • Pete Moore, Creator of the Pain Toolkit  

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Pain management programmes can ‘remove the barriers’ that prevent people with pain from living a normal life, says Dr Owen Hughes of the Pain and Fatigue Management Centre in Bronllys, Wales

To listen to this programme, please click here.

Presenter Lionel Kelleway returns to the Bronllys Residential Pain Management Programme where he himself was a patient to talk with staff and patients about what happens on the programmes and also shares his own experience. Mary Rhys Williams describes her work as an occupational therapist helping patients to adjust their lifestyles and consultant Mark Turtle explains what makes a patient suitable for a pain management programme. We also hear from Sheila Day, whose partner has chronic pain, about the challenges faced by the loved ones of people with pain.

Issues covered in this programme include: Family, confidence, mental health, multi-disciplinary, chronic fatigue, relationships, depression, pain toolkit, psychology, muscle spasm, meditation and reiki.

Lionel Kelleway: Hello and welcome to Airing Pain, brought to you by Pain Concern, a UK charity that provides information and support for those who live with pain. Pain Concern was awarded first prize in the 2009 NAP awards in chronic pain, and with additional funding from the Big Lottery Fund’s ‘Awards For All’ programme and the Voluntary Action Fund Community Chest, this has enabled us to make these programmes.

Berni Bustin: The difficulty with having a chronic condition is that it completely undermines people’s confidence, their sense of self-esteem, their sense that they can actually take an action in their life that makes a difference.

Rhian Evans: Last year actually I had a mental breakdown and I got as bad as I could get.

Mary Rhys Williams: Particularly with family and friends, it’s often either, ‘Well, I don’t understand what’s going on with you, why don’t you get better?’ or ‘I’ll just look after you’.

Sheila Day: You’re actually not quite sure how to cope with it. What are you meant to do? Are you meant to keep saying, ‘Are you alright, what can I do?’ If I did then you would have said, ‘no, there’s nothing you can do’ and you would have got more cross and I would have got more frustrated: ‘This is not my fault.’

Kelleway: Our aim on Airing Pain is to be led by you on the topics and issues we explore. I’m Lionel Kelleway and over the last few months we’ve made numerous references to multi-disciplinary pain management. Well, in response to your comments, today’s programme is coming from Bronllys Pain and Fatigue Management Centre in rural mid-Wales. It runs three-week residential management programmes to help people with pain and/or fatigue learn skills for managing their condition. And it’s something of a personal journey for me, because in January 2008, I was a resident here and now I’m a graduate of the Bronllys pain management programme.

Evans: It’s been something I’ve been needing for 15 years.

Tracy Thomas: I’ve come one person; I’m leaving a completely different person.

Kelleway: Owen Hughes is a consultant counselling psychologist and head of the Fatigue and Pain Management Programme here at Bronllys. Tell us a little bit about the programme: what do you do here Owen?

Owen Hughes: Well, what we do is we work with people who have chronic pain or chronic fatigue problems. They come for three weeks on a residential programme and learn how to manage their pain or fatigue, so that it interferes less with their quality of life. What we don’t do is cure people of their underlying condition because, as far as we know, both of those conditions are currently incurable. But what we do do is try to remove some of the barriers to people living a normal life. Chronic pain and chronic fatigue may not kill you, but they can certainly end your life as you know it. So it’s about understanding what’s happened to people in their lives, what’s changed and understanding what they actually want their lives to be about now. So it’s about looking to the future.

Kelleway: I suppose it’s a bit of an indulgence, but I would like to introduce you all to my best friend and loving partner Sheila who, along with me over the last 10 or 11 years has had to live with me and my pain. Can you remember what I was like before I had chronic pain?

Day: Quite easy going [laughs]… You had your moments of not being easy, but on the whole you were quite a jolly sort of person, getting on with normal day-to-day things.

Kelleway: And what about after, when I had the operation?

Day: That was totally different: really down, tearful, lots and lots of hours of not speaking, suddenly disappearing out of the house, not saying where you were going – not that you ever went far, it was mainly around our meadows – but just not communicating whatsoever.

Kelleway: Was I difficult to live with?

Day: Quite. But because I loved you, I stayed with you [laughs].

Kelleway: What were the worst times? I know I used to get angry, I used to snap, I used to get extremely cross and throw things…

Day: All of those – not so much the throwing things – but the snapping used to upset me more than anything, because I probably hadn’t done anything wrong, but because obviously the pain was very bad for you, you had to take it out on somebody and I happened to be the nearest thing.

Kelleway: One of the things that people often say, who live with people in pain, is that they feel frustrated because they can’t help with the pain and that is a problem for them rather the person suffering from pain. Did you feel that?

Day: Oh yes, definitely. And I suppose a little bit selfishly, you tend to stop asking a lot of the time, ‘have you got a pain?’ because obviously you have. So, you just don’t say anything, which might seem a little bit unkind really. It’s just frustrating not being able to do anything to take it away, even if only for a short time.

Kelleway: You’re listening to Airing Pain, presented this week by me Lionel Kelleway and brought to you by Pain Concern, the UK charity providing information and support for people who live with pain. Before we continue please bear in mind that whilst 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 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.

Hughes: Mood has an impact on people’s experience of pain. So if people are feeling depressed or they’re feeling anxious, guilty, angry… all of those things can increase people’s experience of pain and make the pain seem worse. And we know that there are actual physical changes that happen in people’s nervous systems when they’re experiencing those sorts of moods. So this programme is about helping people to feel more confident about their lives so that they don’t feel so anxious, so they don’t feel so depressed and they can see a future.

One of the ways we do that is by showing people that they can be more physically active and that they can be more socially active as well – so they can go back to work, if they wish to do so; they can spend more quality time with their families, play with their grandchildren and enjoy life – go down to the pub and spend an evening with their friends, if that’s what they wish to do.

Kelleway: One of the important principles here, as I remember from my attendance here three years ago, is that pain doesn’t equal harm.

Hughes: Indeed, hurt doesn’t equal harm. In acute scenarios where people stub their toe or get a paper cut etc. then yes, the pain is associated with a harm. But, the sort of pain that we’re dealing with here is the type that has lasted beyond the normal healing process. For most of us, the vast majority of conditions that human beings get, the human body will have healed itself within three months. The people we see here have usually had their pain problems for an average of eight years, so they’ve gone well beyond the time when their body has carried out the normal healing process and what they’re now into is they have a pain which is a product largely of their central nervous system, as opposed to any ongoing damage.

Rhys Williams: How are you cutting the lawn? Are you still cutting it all in one go or are you taking a few breaks?

Kelleway: No, the last time I said I was going to cut it all in one go I got slapped by one Mary Rhys Williams.

Rhys Williams: Yes, I remember Lionel as a patient and that was what the problem was.

Kelleway: Well, all you’ve got to do is rearrange the weather, because the weather in Carmarthenshire means that if you don’t cut it all in one day, it rains the day before and it rains the day after.

Rhys Williams: I don’t care, you can do it the day after that.

Kelleway: For most people, I suppose, the perception of occupational therapy involves raffia, basket making and plasticine, so what has that got to do with the management of pain and chronic fatigue here at Bronllys? Well, here with me is Mary Rhys Williams, who is the senior occupational therapist here. Does it involve plasticine, basket work and raffia, Mary?

Rhys Williams: Not on the programme specifically, but if that would be one of your interests, then some of the things that we actually talk about on the programme would enable you to get some pleasure out of doing that without paying big prices. So actually occupational therapy is very much here as it is anywhere else in terms of helping people to enjoy what they do, but also to do it so that, at the end of it, there is a satisfactory outcome for them, without them actually saying, ‘I wish I hadn’t done that’.

Kelleway: Do the people who come here onto the programme actually do nothing before they come here then?

Rhys Williams: It’s variable. We have some people who, perhaps you would say, totally overdo, so they’ve arrived here almost at the point of exhaustion, because they’re so determined to get things done that they do it whatever price they pay. There are other people, who perhaps have had what you may call ‘unhelpful advice’, or perhaps advice for managing things in the acute phase, so they’ve got to the stage where they’re not very active at all. And it’s quite easy to get into that pattern of doing less and less, because you feel anxious, you feel worried, ‘what might happen if I do this and I can’t deal with it’ etc. etc.

So the message that we try to give here is that any kind of increase in symptom doesn’t mean that you’ve harmed yourself, it just means you’ve used a bit that perhaps hasn’t been used for a while. But, the longer you don’t use something, then obviously when you come to use it, the longer the effect of that from doing it. So, a lot of what occupational therapy here is about is breaking into what we look at as the ‘over or under activity cycle’, or the ‘Boom and Bust cycle’, in terms of ‘I have to get everything done today, in case I don’t get anything done tomorrow’, but actually quite often then you wouldn’t get very much done tomorrow, because you’ve pushed the boat out today.

I mean, we have a laugh here about, ‘do you realise you can stand up to watch television?’ And people think I’m being quite funny and what I’m actually saying is that when we go to watch television, we always sit down. Therefore, if the film is three hours long, that’s as long as you sit and nobody actually thinks about the idea that, ‘well actually, I could stand up behind the chair and still see the film. I can do a bit of ironing and still see the film’.

Kelleway: Mark Turtle is a consultant in pain management and anaesthetist at West Wales General Hospital, where he works for the health authority. Mark, your role here at Bronllys is largely in the assessment of people who are referred here. So what makes the pain sufferer that you assess suitable to come to Bronllys.

Mark Turtle: In my opinion, the person should have examined carefully the option of following the medical model. The medical model initially would be the model which every health care professional, in the whole world, applies. So, if an individual has a symptom, the first thought of any health professional should be that there may be a treatable condition which is causing the symptom, which can be managed and cured.

Kelleway: But one of the very early things I learned from my attendance here at Bronllys as a participant is that most of the people here felt failed by the National Health Service, by their GP and they saw this, the attendance at Bronllys, as the last chance cafe.

Turtle: Well as far as the last chance, in some ways I would accept that because either these people will have experienced other facilities within the health service or they’ve come straight here, in which case I hope as a part of our assessment process we will agree that the things that they’ve missed out weren’t pertinent to them, in which case we’re happy that that doesn’t need to be revisited. And whilst conventionally the health service will offer what it has got to offer, and if it hasn’t got a cure for the condition, then it tells the person just to get on with it, here we actually help them get on with it.

Kelleway: You and I go back quite a long way, you’ve been my pain consultant for a number of years, we served together on the Welsh Pain Advisory Board. Let’s talk about me for a minute.

Turtle: Alright, yeah.

Kelleway: What made me suitable to come here to Bronllys?

Turtle: Well I think the fact that, as you say, we’ve known each other for some while and yet you’ve still got your problem demonstrates that I wasn’t able to provide you with a solution. I can only provide what I’ve got to provide. We’d gone through my toolbox.

Kelleway: I have to say that some of them worked very well, but it was the side effects that stopped me taking the drugs that you prescribed.

Turtle: Yes and it’s a balance isn’t it? Every drug is a potential poison and it’s getting the delivery at the right dose at the right time to an optimal level, at which point you have to decide whether the risks and side effects are more or less than the beneficial effects. In your case clearly you had some beneficial effects, but you had some problems as well and the problems dominated the benefits. So one way or another we still worked through the toolbox and got to the bottom of the toolbox and rather than telling you to clear off we’ve found, I hope, some way of helping you cope with your predicament.

Hughes: When people get referred to the centre the first thing we do is we invite them to attend an information day, so people can come and find out exactly what it is we do here at Bronllys and that’s a four hour session which is held during the day. And at the end of that people then make a decision for themselves, whether they wish to continue and come for an assessment, where we look at their individual problems in more detail, or whether actually that they’re still looking for a medical cure for their problems, in which case the program that we have here is not necessarily suitable for them.

Kelleway: You’re funded by the Powys local health board, but participants come from outside Wales as well?

Hughes: Indeed, yes people can be referred from anywhere in the whole of the UK, or indeed beyond, as long as their local NHS board or trust agrees to the funding of it.

Kelleway: What does it cost?

Hughes: It costs between four and five thousand pounds.

Kelleway: That’s quite a commitment in terms of the National Health budget.

Hughes: It is indeed.

Kelleway: And presumably in return you have to give some assessment of the success or failure of the participants that come here. How do you do that?

Hughes: Well one of the things that we do right the way through the process is ask people to complete a set of psychometric evaluations. So we look at actually how people are functioning when they’re first referred, when they start the programme, when they finish the programme and up to a year later as well. And what we have also done is follow people up five years after they’ve completed the programme here, to see whether they’ve maintained the gains that they have made, and I’m very glad to be able to say that people are still maintaining the benefits of coming here five years later, which is something which very few medical interventions for chronic pain can claim.

Kelleway: I remember in the early days I saw myself very much as a victim of pain. Did you feel like a victim of my pain as well?

Day: Yes, to a certain extent. I used to get so frustrated at times and I’d think, ‘this is not my fault’, you know, and get very angry. But I’d perhaps go somewhere upstairs and just sit and be quiet for a while and think, ‘he can’t help it’. I did on one occasion have cause to go to the doctors and she did ask me how things were and I did break down and cry.

You feel helpless, you don’t know what to do, you’re actually not quite sure how to cope with it – what are you meant to do? Are you meant to keep saying, ‘Are you alright, what can I do?’ I think that if I did you’d have said, ‘no there’s nothing you can do’ and you’d have got cross, and more cross, then I would get more frustrated. So I just used to go away and have a few quiet moments to myself and sort of think, ‘well, never mind, I know he can’t help it, I’ll just try and stay as calm as I can’.

Rhys Williams: I think there’s an element of misunderstanding by the people around them, so particularly with family and friends it’s often either, ‘Well, I don’t understand what’s wrong with you, why don’t you get better?’ or ‘I’ll just look after you’. And, you know, neither of those are actually suitable. There needs to be something in the middle and I think if nothing else this programme dwells on the themes of helping patients or actually giving patients permission to say, ‘what is it I need and how can I go forth and get that?’ if you like. So people with long term conditions find it really, really difficult to say, ‘no, I won’t help you’ and they also find it really, really difficult to say, ‘will you help me?’

Kelleway: This is Airing Pain at the Bronllys Pain and Fatigue Management Centre in Powys, with me, Lionel Kelleway.

If you’d like to make a comment about the programme or put a question to our panel of experts, then please do so via our blog, message board, email, Facebook, twitter, or if you prefer a good old fashioned pen and paper then the address to write to is Pain Concern, 1 Civic Square, Tranent, EH33 1LH. All of this information is on our website at www.painconcern.org.uk. It’s a one-stop resource to get further information about this programme, including a glossary of the medical terms used and to download this and all previous editions of Airing Pain, along with a host of information on how to manage your pain.

Bustin: It completely undermines people’s confidence, their sense of self-esteem, their sense that they can actually take an action in their life that makes a difference.

Kelleway: Berni Bustin is one of two psychologists here at Bronllys. So, I mean there’s quite an emphasis Berni on psychological help that you can give pain and fatigue patients. So, why the emphasis?

Bustin: When you have a condition that doesn’t seem to be justifiable by any sort of medical investigation, or the intensity of the pain often isn’t justified, or often there’s no cause identified, people often get this sense that, ‘it’s all in my head, nobody believes me’. And it’s quite possible on occasion that they are disbelieved. Our culture is not very kind to people that are seen as not pulling their weight perhaps. And that in itself creates real psychological difficulties for people. To be suffering phenomenally with this condition, not be believed by the only people you think that can help you and then to be finally told, ‘well, I’m sorry, you’re just going to have to get on with it on your own’ – why wouldn’t you be depressed and anxious about that? It seems a perfectly natural cause.

Kelleway: How can you help then, me as an individual, change my relationships and the way I feel away from here?

Bustin: That would depend on a session that you and I have together Lionel. It really is as unique and individual as that though. I don’t know what you want out of your life and until we’d spent some time together… it may be that you don’t know what you want out of your life at this point either. And you don’t perhaps have a vision of where you want to go, how you would like things to be, because actually if you have got a chronic condition it can knock your feet out from under you with even thinking you’ve got the capacity to bother to think about that. Because every day can be just such a struggle getting from the getting up to the going to bed, that to actually step back and think, ‘well there’s a life out here to be lived’. Most people with a chronic condition don’t even take that breath and have a look. Actually it’s that nose to the grindstone every day with coping and surviving. So what they get when they come here is that opportunity to put the brakes on, stop, step back and breathe and have a look, and think, ‘Oh yeah, there is a life to be lived after all.’

Kelleway: Tracy Thomas is a long term chronic pain patient and she joins us on the last day of the one hundred and ninety second pain management programme here at Bronllys. How long have you been a chronic pain patient?

Thomas: It started five and a bit years ago. I pulled a muscle in my neck doing yoga and then for the next two and a half years it kind of happened more and more commonly – the simplest thing I’d do and my neck would go into spasm. And then two and a half years ago I pulled my neck, or rather it went into spasm and the pain moved into my back and I’ve been in constant pain since.

Kelleway: Do you think the people that were first treating you, your GP and that, understand that pain can take your life away?

Thomas: No, I don’t think they do. I don’t think when you go to your GP – I’ve seen a lot of different GPs along the way and I have found sympathetic ones but I’ve also come across some very unsympathetic ones. I remember one GP just telling me, ‘some people just have more muscle pain than others’ and I wanted to smack him.

Kelleway: Because one of the early things that they tell you here on the pain management programme is that this is not a cure – you do know that you’re going to go away with your pain. How do you feel about that?

Thomas: Part of what they teach you here is acceptance and they’ve done a very good job of it because I have accepted it and I don’t feel upset about that, I feel positive. I feel I can go away and I can use all the tools that they’ve given me to cope and deal with the pain and that I can now look forward and have a great life, with pain, but it doesn’t necessarily have to control my life and that I can control the pain and it’s going to be good.

Kelleway: Rhian Evans is a long term chronic fatigue patient. How’s it been Rhian?

Evans: It’s been something I’ve been needing for fifteen years and it’s eye-opening because it was all very obvious things really, if you really put your mind to it, but putting it all together is brilliant.

Kelleway: Some participants that I have kept in contact with and those that I spent time with here three years ago saw this very much as the last chance cafe.

Evans: Indeed.

Kelleway: If you fail here then there’s nothing left for you. Did you feel like that?

Evans: Absolutely. Last year actually I had a mental breakdown, and I got as bad as I could get. I found alternative help – going to an alternative healer that practices Reiki and that helped me no end. So I had a lot to bring with me to this and this was just like completing the book, as it were, you know like a recipe book.

Turtle: So Lionel you’ve spent the three weeks on the pain management programme, as you say three years ago. How would you say it changed your approach to the management of pain?

Kelleway: Well, it changed me immediately because I was here with seven other people who were in pain and that was a liberating experience to know there were people who were also suffering. But what the course gave me was the freedom to be in pain, do you understand what I mean? I saw the course, the programme, as a facilitator to understand that it was alright to be in pain. One of the things I always remember you saying in one of your marvellous lectures was, ‘You’re alright. It doesn’t matter who you are or what you feel; you’re alright.’ So that’s what I went away with, but it took me a long time afterwards to – I hate the term unpack – but to unpack what I took away from here, but I took a lot.

And I don’t know that, three years later, that I consciously use any of it, but if I think about it it’s very much a part of my life and the words said by many of the people here often make me smile. And it’s part of what treats my pain, I suppose, every day. It still hurts like hell. It hasn’t gone away, but I have a much better life with my pain now after being at Bronllys. Thank you.

Turtle: You’re welcome. And what would your nearest and dearest say has been the outcome of coming on the programme?

Kelleway: Well, she can actually tell you herself.

Day: I know it was meant to be ‘learn to love your pain’ and I do think that you perhaps have learnt to accept it a little better. You’re certainly a lot brighter, you’re more or less back to your old self – there’s a lot of people that recently have seen you that haven’t seen you for about a year or so have suddenly said, ‘It’s just like having the old Lionel back again.’ And you’re so much easier to get on with now. We don’t have the snapping, or only occasionally, but not just out of the blue, you don’t get snappy. And you’re just back to, sort of, as you were – a lot, lot better.

Evans: It was remarkable the way they videoed us on the first day, and then videoed us yesterday, just to see the difference in walking, standing from sitting and then walking up and down stairs. The difference was just remarkable in three weeks.

Kelleway: You now know it’s alright to be you, it’s alright to have chronic fatigue…

Evans: Yeah, learning more about me was the awareness and actually looking inside yourself, the meditationy-type things and psychology. That was mind blowing if anything and I had quite an emotional week last week.

Kelleway: And for anybody else suffering like you, would you recommend Bronllys?

Evans: Oh without a doubt. In fact I’d recommend the teachings that they have here in schools to be quite honest – life skills these are.

Kelleway: It’s the end of a fascinating day here at the Bronllys Pain Management and Fatigue Centre and I’ve brought together once again Owen Hughes and Mark Turtle. I’ve had a chat to all your participants today when they were down here for coffee this morning and there was this palpable feeling of elation. Everybody was on such a high today – not just because today is release day, but because they all, to a man and woman, felt so grateful for what you’ve done for them today. But the practicality of being home again is something quite, quite different – what do they do and how do you prepare them for it?

Turtle: Well, in the final week of the programme we spend an awful lot of time addressing those concerns and also perhaps getting the crystal ball out and talking about what might happen when they get home and how they might deal with that. And it’s certainly one of the things that we’re very aware of, that when people do leave here we always say that we are here for them, we’re at the end of a phone and everyone’s more than welcome to come back and see us for sessions. And we also run these two top up days throughout the first year, because we are very aware that the situation that they find themselves in here is very different to their situations at home. And so understanding how other people might react – whether that be the family, their GP, their work colleagues, their friends – these things need to be prepared for.

Hughes: One of the things we’ve got to remember about the programme here, which is not exactly unique, but it’s unusual, is that it is a residential programme. The subjects who come on the course here do knit together very closely, and of course they are cocooned, they’re protected against the threats of outside life. So this going out into the wilds, as it were, is a problem which is specific for a residential programme. Of course, residential programmes have other advantages as well, so it’s like everything in life, there’s two sides to it.

I think you’ll find that over a period of time the vast majority of people will have a degree of elation at this stage. The trick, if you like, is to maintain that because there is a natural fall off. But I think that if we were able to develop some system whereby we could maintain that momentum, then we would have a larger percentage of people who gained substantially in a sustainable fashion.

Kelleway: We’ve just said goodbye to the one hundred and ninety second completion of the programme here. What do you want them to take away from you?

Bustin: The confidence that they have the capability and capacity to take on whatever changes they need to live the kind of life that they want.

Evans: It’s been something I’ve been needing for fifteen years.

Turtle: You can achieve anything you want to in life, despite having chronic pain, but it may be that you actually need to find a different way of going about it.

Thomas: I’ve come one person, I’m leaving a completely different person – it’s absolutely amazing.


Contributors:

  • Berni Bustin, Clinical Psychologist
  • Rhian Evans, patient
  • Mary Rhys Williams, Advanced Occupational Therapist
  • Sheila Day, family member
  • Tracy Thomas, patient
  • Dr Owen Hughes, Consultant Counselling Psychologist
  • Dr Mark Turtle, Consultant Anaesthetist and Pain Management Specialist.

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“Having someone to help you prepare for your life through pain”

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Learning how to live with pain and living with people in pain, and what pain management programmes do

Pain management programmes can ‘remove the barriers’ that prevent people with pain from living a normal life, says Dr Owen Hughes of the Pain and Fatigue Management Centre in Bronllys, Wales.

Presenter Lionel Kelleway returns to the Bronllys Residential Pain Management Programme where he himself was a patient to talk with staff and patients about what happens on the programmes and also shares his own experience. Mary Reese-Williams describes her work as an occupational therapist helping patients to adjust their lifestyles and consultant Mark Turtle explains what makes a patient suitable for a pain management programme. We also hear from Sheila Day, whose partner has chronic pain, about the challenges faced by the loved ones of people with pain.

Issues covered in this programme include: Family, confidence, mental health, multi-disciplinary, chronic fatigue, relationships, depression, pain toolkit, psychology, muscle spasm, meditation and reiki.


Contributors:

  • Berni Bustin, Clinical Psychologist
  • Rhian Evans, patient
  • Mary Rhys Williams, Advanced Occupational Therapist
  • Sheila Day, family member
  • Tracy Thomas, patient
  • Dr Owen Hughes, Consultant Counselling Psychologist
  • Dr Mark Turtle, Consultant Anaesthetist and Pain Management Specialist.

Peer Support. Join the community

“Having chronic pain is very lonely.”

Join the community

Subscribe to Pain Matters

Everything you need to know about how to live with chronic pain

Subscribe

 

 

In pain? Don’t understand what’s happening?

“Having someone to help you prepare for your life through pain”

Our Pain Education Sessions

Fundraise for Pain Concern

Help us to help others

Fundraise

 

How diet can help manage pain, the benefits of mindfulness, CBT and exercise, and a Q&A with pain specialist Mark Turtle

To listen to this programme, please click here.

In this programme, Airing Pain looks at a range of lifestyle changes and psychological approaches we can use to help with managing pain. Dr Rae Bell tells us how a good diet can help in managing pain, telling us about foods which are natural painkillers and why we should perhaps give cola a miss. Ron Parsons describes the exercise routine which has helped him to manage his lower back pain.

Chris Main discusses Cognitive Behavioural Therapy and Vidyamala Burch explains how mindfulness can help people to live in the moment and accept pain while overcoming fear, anxiety and depression. Pain specialist Dr Mark Turtle answers your questions on weight loss, getting referred to a pain management programme by your GP and coping with visits to the dentist in our Q+A session.

Issues covered in this programme include: CBT/cognitive behavioural therapy, back pain, mindfulness, diet, lifestyle, exercise, weight, injury, stiffness, stretching, nutrition, anti-inflammatory, habits, pain beliefs, caffeine, Omega 3 and Omega 6.

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 who live with pain. Pain Concern was awarded first prize in the 2009 NAP Awards in chronic pain and with additional funding from the Big Lottery Funds Awards For All programme and the Voluntary Action Funded Community Chest this has enabled us to make these programmes.

I’m Paul Evans and each fortnight Airing Pain will look at the topics that affect us: the coping mechanisms, medical interventions and therapies that might help us regain control of our lives. And in today’s programme…

Rae Bell: People need to think carefully about what they are eating – not only the content of what they’re eating but how many times a day they eat.

Vidyamala Burch: It really was made plain to me that my situation was incurable and so whether I was going to have a good life or a life full of distress and suffering was partially dependent on whether I was going to take responsibility for how I live.

Ron Parsons: Some of the older people with the arthritic pain do find it difficult to do the exercises and yet there are others, and I can name one who is 86 years old, who religiously does her exercises every day in bed before she gets up and she knows the benefit of it.

Evans: More on those stories coming up. But first a word of caution, that whilst we believe the information and opinions on Airing Pain are accurate, based on the best judgement available, you should always consult your health professional on any matter relating to your health and well-being. He or she is the only person who knows you and your circumstances and therefore the appropriate actions to take on your behalf.

Now bearing that in mind, one of our aims on Airing Pain is to find answers to questions you’ve raised with us, so please do take advantage of this opportunity to connect with our experts via our message board, email and not forgetting pen and paper.

The first question today is about back pain: ‘My doctors told me that I will be in less pain if I lose weight. Will I? And why?’ Today’s expert is consultant anaesthetist and pain specialist Dr Mark Turtle.

Mark Turtle: Firstly one must remember that pain has a large variety of effects on an individual. It tends to reduce a person’s self-esteem. Being overweight also reduces a person’s self-esteem, so being overweight can have an adverse effect on the overall situation and therefore make the person less tolerant to their pain and to painful situations.

That’s one background comment, but I think specifically that this may refer to spinal pain and it is often suggested that people with spinal pain should lose weight. Now, there is a relationship between weight and spinal pain. It’s not a straight line relationship. In other words, somebody who is a little bit overweight will not have rather less pain than somebody who is grossly overweight and somebody who’s excessively overweight have more pain again. In fact, what happens is that if you look at the instance of pain and relate it to weight, there is a very small increase in the pain, as weight goes up, until a certain weight is achieved and then the increasing pain goes up excessively. So, in other words, there is a very small relationship, unless you are quite markedly overweight.

Now, quite apart from this evidence it does seem logical that somebody might lose a bit of weight to ease their back, because after all, the lumbar spine in particular, is the only structure which supports the top part of the body, so if the top part of the body weighs less, that part of the back has to do less work and therefore one would assume that it would be less painful. And then a final comment is that the evidence shows that levels of activity are probably the most important thing with regard to low back pain, in other words, increasing activity tends to reduce the problems whereas recumbency makes it worse. And of course the lower your weight the more likely you are going to be able to indulge in physical activity.

Evans: That’s consultant anaesthetist and pain management specialist Dr Mark Turtle. He’s also president of the Welsh Pain Society. Later in the programme we will be talking about nutrition and its role in pain management, but staying with lower back pain and physical activity for the moment, Ron Parsons lives with his condition and he’s also patient representative to the Fife Pain Management Committee.

Ron Parsons: I’ve got a lower back problem, which is basically fair wear and tear, probably from an old rugby injury. I’ve also got upper back fair wear and tear, which is causing pain in the neck and the shoulder areas and just over 18 months ago I broke a wrist, badly, which is turning arthritic now. First thing in the morning it’s very, very stiff.

What I did originally, was, go to a chiropractor with a lower back problem because it was really getting very painful. He did a good job on me but then advised me that if I wanted to keep the back in as good a condition as it could possibly be, that I’d have to go through a fairly strenuous set of exercises daily, which I have done religiously for 20 years. I still am quite painful first thing in the morning but once I have done the workout, you know, I can manage the day. I still get twinges, but I’m able to play golf and really participate in all the sports that I want to.

First of all I do a light warm up in the morning, just to get the body moving and get the body warm and then I go through a series of about 13, 14 stretching exercises, exercising different aspects of the lower back and there are a whole lot, I mean it’s a set of about 14 exercises and the whole thing with the warm up takes me about 35 minutes. I also now, of course, have started doing exercising on the wrist as well and the neck. And the neck is more again, a series of six exercises with the neck followed by relaxation exercise. So my whole exercise routine for the hand and the neck and the back now works out now to be about 50 minutes every morning.

Evans: Ron Parsons. You’re listening to Airing Pain, presented this week by me, Paul Evans, and brought to you by Pain Concern, a UK charity providing information and support for people who live with pain and also for those who care for and about us. You will hear about the importance of physical activity many times during the course of these programmes but another keystone of a self-help pain management regime is diet. Rae Bell is head of the multi-disciplinary clinic at Haukeland University Hospital, Bergen in Norway.

Rae Bell: Clinicians should start to examine their pain patients’ diets because this hasn’t been the usual work up for a chronic pain patient. I know that my colleagues at the pain clinic at Haukeland in Norway initially were rather sceptical, but they also began to ask their patients what they ate and the first thing they discovered was the same that I had noted: that many patients had poor diets.

Many of our patients are depressed and they don’t feel like making food; they don’t earn a lot of money, so they can’t buy everything they want to eat. And so it’s especially important, I think, that chronic pain patients have a good healthy balanced diet and there are several reasons for this: firstly, the nervous system has the capacity to dampen pain – I’m sure most people have heard of the body’s own morphine like substances called ‘endorphins’. In order to be able to function optimally, the nervous system requires specific nutrients, such as essential amino acids – there is one called ‘tryptophan’, which is very important in the body’s own pain dampening systems and tryptophan is found in chicken and sea food, turkey, avocados, bananas… There’s just a sort of an example. So on the very basic level the nervous system needs nutrients. We know that specific vitamin deficiencies can cause pain problems, for example, vitamin B12 deficiency can cause very unpleasant peripheral poly neuropathy, which is a nerve pain in the feet and also possibly in the hands. Vitamin D deficiency can cause diffuse musculoskeletal pain.

Evans: Now the media is full of claim and counter-claim of what is and what isn’t good for us. So what should we know about food before believing the headlines?

Bell: I think it’s really important that common sense is involved when considering what kind of food we should eat because we are bombarded with a jungle of misinformation and lots of weird diets and I don’t think pain patients should be on weird diets.

The World Health Organisation published a report in 2003 where they described how there’s been a huge change globally moving from predominantly plant-based foods to high energy foods and they were especially focusing on the balance between the intake of Omega 3 fatty acids and Omega 6 fatty acids. And the ideal ratio in these fatty-acids is 4:1, four times the amount of Omega 6 compared to Omega 3, but in the, for example, the average American diet today, the amount of Omega 6 is around 15-25 times the amount of Omega 3 intake.

Omega 6 fatty-acids are found in red meat, dairy products and especially in, for example, soya oil and soya oil is used to make a lot of fast foods and snacks. So I think the widespread use of soya oil has contributed to high levels of Omega 6. Omega 3 is found in fatty fish, oily fish, also in flaxseed oil, flaxseed and walnuts. That’s some examples of foodstuffs having relatively high levels of Omega 3.

And Omega 6 has to do with inflammation. We need to have a certain supply of Omega 6 because we need to be able to have inflammation in the body to heal injury, but if we get too much that can create its own problems. And Omega 3 has an anti-inflammatory effect, so one aspect with regard to diet and I think for pain patients is to ensure that one has sufficient levels of Omega 3 and that one reduces the amount of Omega 6.

Evans: We will stay with the subject of diet, because it’s so important and should be so easy to address in our lives as we try and manage our pain. Here’s Rae Bell of Haukeland University Hospital in Norway again.

Bell: There are actually a number of foodstuffs that have been demonstrated to have anti-inflammatory effects, just like non-steroidal anti-inflammatory drugs, for example, in virgin olive oil there is a substance called oliocamfole and it has been shown to have a similar effect to ibuprofen. And this is really interesting because non-steroidal anti-inflammatory drugs have a lot of adverse effects, so if we can achieve some of the same effect through a diet, that would be ideal.

Now, if we think about antioxidants – antioxidants are found in many foodstuffs and many antioxidants have anti-inflammatory effects, for example, resveratrol is an antioxidant which is formed in certain plants when they are under attack by bacteria or insects and it’s found in the skin of red grapes and I’m sure everyone will be happy to know in red wine and it has a powerful anti-inflammatory effect. Other antioxidants are found in the reddish-blue pigments in like blueberry skins and cherries. But the problem is there’s a lot of hype in the media and when you watch television, lots of advertisements saying, ‘Buy this antioxidant product.’ But actually you don’t really need a huge intake and the best way to get antioxidants is through the diet, not through pills.

And I think most people will know whether their diet is healthy or not. If we are busy, we’re on the run and we just have a little snack here and there, that’s not good enough. We need to be getting vitamins; we need to be eating fish – more fish, less red meat; lots of fresh vegetables – green leafy and brightly coloured vegetables, because it’s the colour pigments which contain the antioxidants. So if you think of a colourful Mediterranean kind of diet then you are on the right track.

Evans: So that’s what we should eat, but what should we avoid?

Bell: Specific foodstuffs can increase pain. I am working… I have some colleagues in France who are doing very good science on an area called ‘polyamines’, which is very interesting. Polyamines regulate a receptor in the nervous system which is involved in increasing pain. Oranges, orange juice contains very high levels of polyamines. That doesn’t mean that you should stop drinking orange juice, it just means you should think twice before drinking many glasses a day or huge numbers of oranges. Peanuts have quite high levels of polyamines.

Then there is the question, the whole question of coffee. For the chronic pain patient, coffee can disturb sleep, everyone knows about that, and when you have chronic pain and you can’t sleep, you sleep poorly, then you will feel the pain more strongly. If this is consumed on a regular basis it can increase risk of developing a chronic daily headache. It has interactions with analgesic drugs; it increases the effect of paracetamol and aspirin and that’s why it’s used as what we call a co-analgesic. There are some pain relieving drugs which contain caffeine, but caffeine has other attributes which are not beneficial at all, actually deleterious.

High levels of caffeine can link to osteoporosis, so if you drink more then six cups of coffee a day your risk of developing osteoporosis is increased and this is also the same for cola. I’m amazed by how much cola my patients drink and I have patients that drink regularly, every day, four litres of some kind of cola beverage and cola contains phosphoric acid, caffeine and sugar. I mean, the taste might be nice, but it has nothing positive about it otherwise and it can cause osteoporosis in the same way as drinking large amounts of coffee because it has such high caffeine levels.

Evans: That was Rae Bell of Haukeland University Hospital in Norway.

Back to our message board… and this is another question we have received: ‘I’ve just finished a 3-month course at a pain management clinic. I’ve had chronic pain for 8 years and it’s taken me all that time and a new GP to get help. For five years I was house-bound and depressed. Why don’t all GP’s know about pain management and why does it take so long to get help?’

Answering your questions today is Dr Mark Turtle, President of the Welsh Pain Society.

Turtle: Right at the beginning I would say that we must differentiate between different forms of pain measurement. Now I assume by the way the question is put, that one is referring to a cognitive behavioural-orientated pain measurement programme, rather than a sequence of treatments within the pain clinic.

Now, one of the things one has to remember is that there is a lack of knowledge, not only from society in general, but from health professionals. I’m thinking in terms of understanding about chronic pain, what the remedies are, how you manage it. It’s not taught, for example, to any great degree at medical school. Tied up with this often is that it’s not a conventional illness which people understand; it doesn’t follow the ‘medical model’ – what I mean by that is that somebody presents with a symptom, the health professional attributes it to a particular pathological disease process, applies the appropriate remedy for that condition and then expects the symptoms to disappear. The trouble with chronic pain is that it often doesn’t follow that model, either because you can’t find the cause or the treatment is worse than the cause or there is no specific treatment for that particular condition. So we’ve got a lack of understanding and inability sometimes to take the patient’s problems seriously.

There is also a lot of lack of information and maybe even disinformation, so that sometimes the GP and the people working in his practice may actually not know what is available and may have heard perhaps that, for example, the waiting list is extremely long, when in fact that may not necessarily be the case.

Now, the final problem, which is, I’m afraid very, very important and that is financial constraint. Something like 1 in 5 people in the population have a chronic pain problem, so the number of people we are talking about within the UK is extremely large. So that even if we had an ideal system, it would be difficult to apply that for all those people, so unfortunately it is likely they are going to have to be in some sort of strait somewhere in the system and the health professionals are worried that the whole system will get clogged up.

But just coming back to my original point, I believe that every GP ought to know about their local pain clinic, but that trained clinic may then make use of a pain management facility and so won’t understand why a general practitioner may not know the full details of what is contained within that pain clinic.

Evans: Mark Turtle referred there to cognitive behavioural therapy or CBT, so what is that?

Chris Main is Professor of Clinical Psychology at Keele University where he’s researching how best to develop patient-centred approaches to care, particularly with people who have lower back pain.

Chris Main: Cognitive behavioural therapy is a way of looking at the patient and the situation they are in – looking at their beliefs about pain, looking at what they are actually doing. And it’s surprising how often we are unaware of habits that we’ve developed. We are all quite capable of building up good habits and bad habits and I think that sometimes looking at this carefully, doing a bit of detective work perhaps on yourself, perhaps keeping a diary under some guidance will help you identify things you are doing that perhaps you weren’t aware of. I think, more importantly, identifying things that are in fact unhelpful, or superstitions that we have that are really not very useful.

But the role of the professional in this situation is to offer some guidance in terms of their experience of working with people that have got pain. And indeed in pain management programmes for many years we’ve built up patients’ stories of all sorts of different ways that people cope with situations. And really the whole pain management movement has been developed on the basis of real concerns, real problems that patients actually have. We’ve known for a long time that showing people how to relax is helpful, can counteract muscle spasm and, surprisingly, it can make people less tired. There are clinics in the country which are teaching things like mindfulness, which patients find helpful. Not everyone, but certainly there is a proportion of people that are helped by various types of relaxation that help them to get rid of some the stress in their bodies, because pain is a stressor.

Evans: Now, Professor Chris Main mentioned clinics that offer mindfulness. What is mindfulness? Well, one of the organisations that offer training in the area is Breathworks. They have run programmes for a wide variety of organisations, ranging from local authorities to NHS trusts. Vidyamala Burch founded the organisation in 2001 and it’s based on her own experience of living with chronic pain for the last 35 years.

Burch: I was in hospital in New Zealand in Auckland. I was very ill, had a big, sort of personal crisis and there were a few significant events in that time. One is that I had a terrible night. It was a real sort of dark night of the soul and I thought, ‘Oh my God, I just cannot get through to the morning’. And then I had this other voice that came in, that said to me very, very clearly, ‘You don’t have to get through till the morning, you just have to get through the moment.’ And my whole experience completely changed – I relaxed, I softened and I thought, ‘Well, I can do that – I can get through this moment and I can get through this moment and I can get through this moment.’

And that was such a personally significant experience that it changed my life. It completely changed my perspective on how I related to the past and how I related to the future. So rather than be caught up in all these regrets about the past or anxieties about the future, I thought, ‘Well, that’s all just in my head. The only thing that I’m ever really experiencing is just this moment and I can do more than just survive this moment, I can live this moment fully.’

Another thing that happened during that time in hospital is, they sent a chaplain to see me, I think because they didn’t quite know what to do with this young woman, who had an incurable spinal injury and it was obvious that I needed help. So the chaplain was this lovely, elder gentleman that came and sat by my bed and held my hand and he asked me to visualise a time when I’d been happy and a place when I’d been happy and so I went back to the mountains of New Zealand, where I’d done a lot of climbing in my teens. Then he brought me back to my hospital bed and that was also very significant because I felt totally different, because of what I had done with my mind. My actual experience of pain lying in a hospital bed hadn’t changed at all and yet my overall experience of myself as a human being had completely transformed by what I’d done with my mind. And I came out of the hospital realising I had this huge tool at my disposal which was my mind.

Evans: So that’s the background, but what is the central principle that Vidyamala Burch and Breathworks is teaching?

Burch: It’s awareness. We are teaching people to be aware of their experience in the moment physically, mentally and emotionally. And if you are aware of what’s happening, you can then divide it up into two different components that we call primary and secondary suffering. So in the case of my back pain, the primary suffering is the unpleasant sensations in my back and my legs and my neck and various other places as I’m sitting here.

The secondary sufferings are all the ways, if I’m not aware, that I react automatically to that primary suffering. So, physically, it will be secondary tension. So because I’ve got these unpleasant sensations, I tense against them, which makes my pain worse. I may have mental states which are unaware reactions to the pain, like catastrophising – thinking, ‘Oh my God, when is this going to end? I can’t bear it, I’ve had it for ever, it’s not fair, poor me, why me?’ – those kind of things. And the emotional secondary suffering will be things like fear, anxiety and depression.

So we accept that an individual will have all these experiences going on, that’s normal, but what we do is we encourage people to turn towards their experience, get to know it and then tease apart the primary and the secondary. Then we teach people how to accept the primary suffering, to accept the unpleasant sensations that are unavoidable if you are living with chronic pain, but not to accept the secondary suffering. We teach people how to reduce or even overcome the secondary suffering, which is the fear and the anxiety, the catastrophizing, the secondary tension and so on.

What we do on our courses, is on the first week we are very welcoming, we’re very kind and then we get everyone to lie down, those people that can, we get them to lie down. We pay attention to the comfort and we go, ‘Have you got the right height of pillow? Is it just right? Would you like a blanket? Would you like an eye bag? Would you like something under your knees to support your lower back?’ etc., etc. And then we will lead a body scan which is this way of going through the body and just very, very gently, very, very gradually, inviting awareness inside the body. And at the end of that people have had an experience of accepting their pain because for most people, actually, it’s such a relief to stop fighting. It’s so exhausting running away from yourself all the time.

Evans: Vidyamala Burch of Breathworks.

And mindfulness is something that might be relevant to the last of today’s questioners on our message board. ‘I’ve been living with back pain for the past 10 years and I normally use relaxation to manage it. However, I find dental treatment very stressful and the pain of having fillings makes it absolutely impossible to relax and makes my pain a lot worse. What can you suggest I do?’ Dr Mark Turtle.

Turtle: The first thing to say is that, ‘well done’, you’ve obviously worked out ways of managing your problem, you’ve accepted that there is a difficulty which isn’t going to evaporate and you’ve demonstrated that there are strategies, which you can employ to turn your situation into one that is tolerable. And I’m sure that you can find some help to expand the value of what you are doing to enable you to experience this rather stressful situation.

And the first thing that we must remember is that you are not particularly unique. It is well recognised that people find going to visit the dentist a stressful experience and yet without necessarily having a logical explanation. The first thing I would suggest is that you try and find somebody to give you a little bit of help in talking it through – so a counsellor, particularly a psychologist, who understands about these things, because planning in advance is the key to it really. It’s working out what you’re going to do when you get in that situation, because if subconsciously you have in the back of your mind a fear that you are going to lose control in that situation, it almost is guaranteeing you will do. Whereas if you feel that you have some strategies up your sleeve, you’re some way towards being able to cope with that situation.

Some people will find alternative practitioners able to give them this sort of advice. If none of this really gets you anywhere, then it may be appropriate to go and see your doctor and it may be considered acceptable and appropriate to be given a sedative to take beforehand. If this is the case, of course, you would want to involve your dental practitioner as well, so that everybody knew what was happening.

Evans: Dr Mark Turtle. And don’t forget that Airing Pain is here to help you, so if you would like to put a question to our panel of experts, then please do via Pain Concern’s message board, email or good old-fashioned pen and paper. And you can download or subscribe to all the previous editions of Airing Pain from ableradio.com/podcasts/airing-pain. And finally, I leave you with some sound advice from Rae Bell.

Bell: Pain patients should be increasing the amount of Omega 3, reducing the amount of Omega 6, thinking of eating a colourful meal with fresh fruit and vegetables, cutting out cola, reducing the amount of coffee. Don’t drink coffee with caffeine in it after 12 in the middle of the day if you have sleep problems. People need to think carefully about what they are eating – not only the contents of what they’re eating, but how many times a day they eat. I have a number of pain patients who perhaps only eat once or twice a day and if you have a tension headache that can be triggered or exacerbated by irregular eating, too-long intervals between meals. So we recommend that our patients eat three main meals and two light meals between the main meals, so that you are eating regularly through the day.


Contributors:

  • Rae Frances Bell, Head of Multidisciplinary Clinic, Haukland University Hospital
  • Vidyamala Burch, Founder of Breathworks
  • Ron Parsons, Patient
  • Chris Main, Professor of Clinical Psychology, Keele University
  • Dr Mark Turtle, Consultant Anaesthetist and Pain Specialist.

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How diet can help manage pain, the benefits of mindfulness, CBT and exercise, and a Q&A with pain specialist Mark Turtle

In this programme Airing Pain looks at a range of lifestyle changes and psychological approaches we can use to help with managing pain. Dr Rae Bell tells us how a good diet can help in managing pain, telling us about foods which are natural painkillers and why we should perhaps give cola a miss. Ron Parsons describes the exercise routine which has helped him to manage his lower back pain.

Chris Main discusses Cognitive Behavioural Therapy and Vidyamala Burch explains how mindfulness can help people to live in the moment and accept pain while overcoming fear, anxiety and depression. Pain specialist Dr Mark Turtle answers your questions on weight loss, getting referred to a pain management programme by your GP and coping with visits to the dentist in our Q+A session.

Issues covered in this programme include: CBT/cognitive behavioural therapy, back pain, mindfulness, diet, lifestyle, exercise, weight, injury, stiffness, stretching, nutrition, anti-inflammatory, habits, pain beliefs, caffeine, Omega 3 and Omega 6.


Contributors:

  • Rae Frances Bell, Head of Multidisciplinary Clinic, Haukland University Hospital
  • Vidyamala Burch, Founder of Breathworks
  • Ron Parsons, Patient
  • Chris Main, Professor of Clinical Psychology, Keele University
  • Dr Mark Turtle, Consultant Anaesthetist and Pain Specialist.

Peer Support. Join the community

“Having chronic pain is very lonely.”

Join the community

Subscribe to Pain Matters

Everything you need to know about how to live with chronic pain

Subscribe

 

 

In pain? Don’t understand what’s happening?

“Having someone to help you prepare for your life through pain”

Our Pain Education Sessions

Fundraise for Pain Concern

Help us to help others

Fundraise

 

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