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Pain Concern has set up a forum for young adult carers across the UK.

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Based in the Lothian region, the Pain Concern Carer Community is a forum for young adult carers to discuss, share information, and keep up with news in the pain community.

With close links to our magazine and radio show, the Carer Community will be a great resource for young adult carers to get support and get in touch with Pain Concern, our expert panel, and each other. Questions you ask will be taken to our expert panel and answered later on our website.

Join the forum here.

The forum is part of a Young Adult Carers project, which aims to feature the young adult carer perspective, provide information and bring together this community. A magazine article looking at anger in relation to young adult carers features in the current issue of Pain Matters. Two Airing Pain programmes, in which we speak to young carers, families and professionals, will be broadcast in June and July. Later in the year, look out for our dedicated information leaflet.

Funded by the City of Edinburgh Council.
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Artist’s impressions of pain in the clinic, and – clubbing or model railways? – why living a good life with pain is in the eye of the beholder

To listen to this programme, please click here.

If only pain were visible… Deborah Padfield talks to Presenter Paul Evans about her project collaborating with people with pain to produce works of art that represent their experiences. Her photographs are co-creations, using objects and ideas brought to the studio by the orofacial pain patients from University College Hospitals, London.

The art produced not only provides a voice for individuals who may have felt their experiences marginalised by the medical establishment and wider society, but is also part of a study aimed at finding better ways for people to communicate their pain. Images created by Padfield – from a clenched fist to flying sparks – are now being trialled by patients not part of the project as visual prompts in ordinary medical consultations.

‘Pain is a memory’, says Dr Rajesh Munglani, explaining how the way we feel pain is affected by past experiences and our emotions. From the phantom limb pain of a soldier wounded in action to an injured motorist caught up in a bitter legal struggle for compensation, the context of chronic pain can be crucial in helping or hindering people from moving on. The different ways people perceive their pain also means, Dr Munglani argues, that perhaps pacing is not right for everyone, all of the time – a big night out might mean a few days in bed for a teenager with pain, but provide an important boost to their confidence.

Issues covered in this programme include: Arts and crafts, orofacial pain, communicating pain, pain perception, neuropathic pain, trigeminal neuralgia, visualisation, memory, amputation and phantom limb pain.

Paul Evans: Hello, and welcome to another edition of Airing Pain, a programme brought to you by Pain Concern, a UK-based charity working to help, support and inform people living with pain, and healthcare professionals. This edition’s been funded by a grant from the Scottish Government.

Pain is invisible and it’s subjective, so trying to express or quantify it can be difficult. Have you underplayed it? Have you overplayed it? And do people believe you? Yes, there are well-established numerical scales by which medical professionals can chart your progress, but could there be a better way for you, the patient, to convey exactly how you feel? If only pain were visible. Well, pain may not be, but the arts, so they say, can convey emotions much better than words. Music can have a valuable therapeutic role, but what about the visual arts?

Deborah Padfield is a visual artist working mostly with photography. She’s collaborated in a project with facial pain specialist Professor Joanna Zakrzewska and her team at University College of London Hospitals.

Deborah Padfield: The project has a lot of different strands, but the first strand is co-creating images with – in the present project – with facial pain patients. And I’ve been really lucky. I’ve got a wonderful group of patients I’ve been working with, who are phenomenally creative and bring all sorts of ideas and objects to those sessions, and I work individually with them to make the photographs. So I’m taking the photographs, but using their metaphors, some of their ideas – we discuss the ideas together, so they really are co-creations and they bring in all sorts of objects.

And the reason I want them to be co-creations is I think by the time someone’s got to a pain clinic, they’ve been investigated so many times, they’ve been on the receiving end of the medical gaze so frequently – I think it’s quite important to reverse that, and that people need to be in control of how their pain is seen, how it’s understood by others. It’s not appropriate or inappropriate; it’s not adaptive or mal-adaptive; it’s what they’re experiencing. And to put it in a shareable space, so it’s not trapped within the body and hidden and private, but it’s out in a collective, shareable, visible place.

We’ve taken a selection of the images and we’ve made them into the pain cards that you see here. At the moment, it’s a collection of 54 cards and we’re still evolving which images we select, so we’re in a study, we’re recording which images get selected most often by patients. And these cards are actually being used not by the patients who have contributed by co-creating them; they’re used by patients who’ve never seen them or been part of the project. They’re coming to normal consultations.

We’re doing a study with, I think it’s 10 different clinicians in different specialties within pain medicine at UCLH, and in the facial pain team and pain management teams – and we’ve done a study group not using images and recording it. We’ve got use of a wonderful… it’s an artificial hospital at UCLH, so the cameras are terribly discreet and hidden. And we’re recording a baseline group not using them and now we’re recording a study group where patients are given the images about 20 minutes before the consultation and then they’re asked if any of the images mean anything to them or resonate for them in some way, or even if they can say that’s not like my pain – my pain is hotter or my pain is like this; it’s not like that – if in some way they mean something to them.

They take those images in, and what we’re seeing is can that change the type of conversation that clinician and patient have? Can it allow other aspects to enter the dialogue? There are so many aspects that I think get missed out if you’re measuring it from 1 to 10 – it’s not broad enough as a sentiment. And when you think the pain is intensified by so many aspects of our lives, if those aspects are not brought into the consulting room and discussed, and the impact pain has on people’s lives, you’re limiting the exchange that can take place. So it’s not trying to say it’ll be alright if the patient talks forever and tells their story forever, but it’s trying to equalise that space, so that the exchange that happens between patient and clinician is useful and is shared. And my observation, which follows my hopes for it, really, was that when you have an image between two people, you have to negotiate.

We all interpret images differently, for instance, we had a session yesterday when we were talking about some of the images and there was an image with a lot of hands around a figure, and some people interpreted that as someone being very supplicant and asking for help from all these hands around. Someone else interpreted it as being actually some figure of authority or some clinical figure and there are all these hands trying to get help – so a complete reversal. But it means that what that image triggers in you is what’s relevant. It doesn’t matter how anyone else sees it. If it can reveal something useful, that you need to bring to that consultation and open up that dialogue. And it doesn’t have to stay connected to the image. It’s just a trigger.

Evans: Let me just try some of these images on myself. [Padfield: Uh-hum] Let me just look through some of them, describe them, and see what they say to me, and perhaps they say something completely different to you. Well, they will say something…

Padfield: They probably will.

Evans: They will say something completely different to you. I’m going through these cards. There’s one here of a fist, a black and white image, a fist clenched, thumb under the forefinger. Now that says to me tension and a gripping pain – almost cramp.

Padfield: That is probably actually pretty close to the experience of the person who I made that with. I think there was a certain amount of anger, but there was the gripping and the sense of tension within it. Some of the images are more literal, and some are more ambiguous, in the hope that you can project more of your own experience onto them. Joanna Zakrzewska is trialing them in her own routine clinics now, which has been really fascinating.

Sometimes she uses the images of the sparks, which are more literally a neuropathic pain or more likely to be a TN pain, but I know that she’s also been discovering that what has been interesting is not always the cards patients select, but also the ones they don’t select, or when they say ‘it’s not like that, it’s not sparks’. And it’s been particularly helpful with people where English isn’t their first language.

Evans: I’ve just picked up this one [with the] sparks. It’s three electrical wires and a firework coming out of it and I’ve just been talking to a lady with TN – trigeminal neuralgia – and that’s exactly what she was talking about. If I’d gone to my GP and said, look, that’s how I feel, I would like to think that my GP would say, ‘I know what he’s feeling’, or ‘there’s something to start a conversation here’.

Padfield: I think there are two things that… The starting a conversation, that’s what I hope is important – it’s not an endpoint; it’s the start and it’s having permission to say it’s like that and see wherever that conversation goes. But I think also, the other thing is you’re saying you‘ll say it to your GP. If, hopefully, you said that ‘my pain is like that’ to your GP, hopefully they’ll recognise it’s TN. You would then be referred correctly and speedily, because I think what happens with a lot of people with facial pain and particularly trigeminal neuralgia – they wait an incredibly long time before they actually get the right referral to a facial pain clinic which deals with trigeminal neuralgia.

Evans: I know that images are used by psychologists to express emotion and things like that – and I’m thinking of a very famous image, Munch’s Scream, which is so evocative of pain: sharp pain and anguish, and people might recognise that – but these are slightly different. Some of them come straight out, but there’s an image here of an empty hospital bed with some words: ‘invisible’, ‘confusion’, ‘not asked’ and ‘why’. Let me ignore the words – it says to me immediately not panic, but worry.

Padfield: Yeah, there’s an anxiety.

Evans: I don’t know what’s going on.

Padfield: I think there’s confusion, anxiety and some of the letters of the words are spelt back to front. I think I was making that with one of the patients from Bradford, and one of them was describing the sense of confusion around and hearing the voices and things talking about you on the bed and around it and it actually not making sense. I don’t think I totally understood that at the time and now I do because I actually have occasions where I will look at letters on the Underground and, I know the words, I can see them, there’s no problem with sight, I can’t make the letters mean anything.

But again, this one you’ve picked out, which isn’t necessarily the most successful image in the aesthetic sense, in the gallery context, but in the clinic context, Joanna Zakrzewska was using this in one of the consultations – I think it might even have been one of our recorded ones – and the person who’d chosen several of the images actually held onto this until fairly late in the consultation. And then Joanna asked her why she’d chosen this particular image and she said she was actually worried about the anaesthetic and that’s why she was terrified of surgery, so that then elicited a whole conversation about the reason she hadn’t wanted to have surgery, which then managed to be turned around.

So I think if you can elicit things which maybe are difficult to say, the hope is that an image can give you permission to say it. And that maybe the image can give a feeling of rapport between clinician and patient, or the clinician can have a way of accessing and understanding it and hopefully that both speakers can shift their position a little. I think communication is successful when there’s movement and there’s a chance for both speakers to shift their understanding, and if that works in medicine, that’s great, you can work together and both go forward to hopefully a successful treatment and management. I think when you’ve got an impasse, as so often you have, it’s very difficult to effect that sense of movement and trust.

Evans: Now there’s another image here of cogs and gears and spanners. My first impression when I first picked it up was – ‘I have fibromyalgia – this describes what my brain does when I’m going through what I call an attack of fizzing and not being able to turn down, constantly bouncing from one side of my head to the other’. I’ve taken a second look at it – [pause] no, I’ve still got that same image. Now, I may not be able to describe that to a doctor, but talking about the image makes it so much easier for me to describe what’s going on in my head.

Padfield: What were you going to say when you stopped, you looked, and you said, when I looked at it again, and then you said ‘no’?

Evans: When I looked at it again, I saw a spanner and I thought, ‘this is a broken body; this is a broken me. It’s not my brain at all because I interpreted the cogs and gears as the working of a watch, whirring around all the time’. Now, I’ve seen the spanner, and I imagine it as the workings of a car and the car being broken. So that’s two separate images, but just by you asking me what did I not see, or what was I about to see, has brought the second image up.

Padfield: I think it’s really interesting. You’ve picked up on lots of things that are within that image: it actually is a broken – literally, it’s a broken clock – and I made it with someone who was very, very keen and knowledgeable about clocks. And he’d had a period where he died and was resuscitated. And when he was resuscitated, he started working with clocks, and clocks suddenly became terribly important – he started taking them apart and putting them back together again. So I think maybe there’s a sense of this being, as you say, the body or the mind actually falling apart, and maybe there’s a spanner in the works somewhere, if you take a very literal metaphor, but also maybe there’s the hope that there’s all this spiralling everywhere, maybe those cogs can be put back together.

And maybe the question is, who does that? Who puts this body, this mind, back together? Is it us as patients? Do we expect it all from a clinician, or can somehow we recognise that together, and actually both effect that movement forward? Because I don’t think you can do one without the other; maybe we have to do more of it as patients.

Evans: Well, I was sceptical. Firstly, I work in radio, doing anything on art on the radio can be a [Padfield laughs] little bit of a nightmare, however, I’m incredibly impressed that I could carry one of your works of art, a photograph, a creation, around with me and hold it up to somebody when I’ve been trying to explain what my condition feels like, where I can hold a photograph up and say, that’s how my brain works. That’s how my arm feels. This is the pain I have in my head. It’s so much easier than words.

Padfield: And how does that make you feel? If you can actually say, this is what it feels like, what change does that effect?

Evans: Well, it would make me feel a lot better about myself, less guilty about not looking ill. It would save an awful lot of explanation. What I and many people say when they say, ‘gosh you’re looking well’. I say ‘Yeah, I’m fine’. Whereas, actually what you want to say is ‘I feel total rubbish. This is how I feel: here’s a picture of it.’

Padfield: Yeah. It’s changing the expectation from the other person as well, isn’t it?

Evans: That was Deborah Padfield.

Now, the feelings or emotion conjured up from seeing or hearing a work of art depend on so many stimuli, past and present, all retained in memory. So does memory have a similar role when it comes to the way we experience pain? Dr Rajesh Munglani is a consultant in pain medicine and lead clinician in pain services at the West Suffolk Hospital, Bury St Edmunds. Previously, as a lecturer in the University of Cambridge, he ran a research lab looking at the mechanisms of pain.

Munglani: I actually got into my research looking at memory formation and my initial question about that many years ago was ‘can you remember under anaesthesia? If you’re having an operation, can you form memories?’ And what we showed is that in fact, you can, in certain situations, form memories, despite the fact that you’re not aware of what is going on. That is called ‘implicit memory formation’.

Now, the interesting thing is, as soon as I started doing the research, I realised that pain is a memory. And it’s the same sort of thing that if you, for example, have a really nice meal at a hotel, and you [take in] the smell of the restaurant, you find that, to re-experience that rather nice event, say, a few months later, all you need is one smell, the smell of the food and that will re-evoke the whole atmosphere.

In the same way, chronic pain is a memory. It’s a circuit that’s been set up and it doesn’t take much to keep it going. You don’t have to have the initial trauma – say, it was an accident or an operation – you can have just very light touches that set the whole thing off or a certain movement, or a certain unpleasant experience that you experienced emotionally, and it will set off the whole pain experience.

If you say, ‘does that mean it’s not real?’ The answer is no, it’s actually very real, because everything in our brain is related to memory. That’s our identity. I don’t know if you remember seeing Bladerunner and the guy realises that the robots all have memories and they don’t know they’re robots, because the memories have been implanted and then he has to think about his own. He’s sitting there playing the piano and looking at all the photographs and it is really quite an important concept that what we’re dealing with and what we try and disrupt, if we need to, is that circuit, and there are lots of different ways of disrupting that circuit.

Evans: So I could go to a concert and I could experience the wonderful violinist on the stage and there could be somebody coughing next to me or somebody smelly next to me and I could go home and listen to the CD of that, and I’d have a completely different experience. Or, perhaps whenever I listen to that music again, I would have the smelly, noisy experience [Munglani: yes], not the full emotional…

Munglani: Absolutely. It’s been modified, and you can modify it. And that’s actually a very interesting way… you may have listened to that symphony in the past and you may have a really nice attachment to it, but then subsequently it’s modified. One of the ways of an unpleasant memory being tackled is through the psychological approaches and what you attach to that memory subsequently and lots of different techniques are called for. And some psychologists will be able to talk about this in a better way than I, but, for example, reframing: you put different contexts around different meaning to that memory. It’s very clever. It works for some people and it doesn’t work at all for others. [For] other people, you have to just modify with drugs, trying to get rid of the circuit and other people of course…

What I do is spend my time finding the triggers, like we talked about the smell that evokes the restaurant. There are sometimes, in the body, little triggers that set off the central pain state and they’re called ‘peripheral triggers’ or ‘peripheral maintenance of central sensitisation’. Something from the periphery feeds in, keeping the whole thing going, and so what we can do as well as working on the central memory and modifying it through, say, psychology, through drugs, you can do something about the peripheral trigger. You can, for example, kill it off, numb it, as I do sometimes, Botox it, take away the muscle spasm, and we know that that is not the whole pain, but that’s all you need is to take down the evoking of that memory.

Evans: Lots of people give the example – and you may have given it as well – that if I stamp on your toe and tell you, ‘oh, by the way, somebody’s stolen all your money and your bank has gone bust’, you will feel quite a lot of pain, but if I stamp on your toe and I say, ‘oh, you won the lottery too’, the pain might not be so severe. So the pain isn’t finite – it’s the surrounding, it’s everything else that feeds into it.

Munglani: Absolutely. The context of pain, the context of suffering, is very important. If you have a memory of a pain and it’s associated with, for example, deeds of valour, and you came out of it well… I mean, when I treat military guys – this is interesting –the way they stand up to certain pains because of the context of the pain meant there was meaning to what they did, meaning to the outcome. Doesn’t always work, but this is… It’s not meant to sound condemnatory to anybody else, but if you have had that experience [of getting] your leg blown off; I’ve seen people who, for example, stepped on mines, had an amputation and still have severe phantom limb pain, but they’re now riding horses, running event companies. They have got back to normal life.

You see others who have lost their leg in a road traffic accident – deep anger at the drunk driver involved, who caused this to happen. And the focus for them very much becomes the court case, the anger at the driver being allowed to go off with a relatively little fine, which often happens and they’ve got the pain in the leg still. So you have this awful situation of trying to help them move on from that experience and, of course, that is where reframing that whole experience – trying to get them to come to terms with the pain, is part of the healing process in letting them move on, and people do move on.

But sometimes you get stuck. You can get stuck physically because the pain is just too severe to deal with. One of the issues is if the pain is that severe, your brain cannot move on because the trigger, say, the stump is painful – every time the stump hurts, it triggers the whole phantom limb experience; it triggers the memory of the accident and you can’t get them to move on and they can’t do it for themselves. So this is where lots of interventions [are necessary]: do you numb the end, do you kill off some nerves, do you put a pump in their back? As well as helping them move on with, say, the court case, the medical-legal process. All of that needs to end to help them move on with their lives, otherwise, they’re trapped. They’re in a prison.

Evans: The examples you’ve given give fairly clear reasons why the pain has started in the first place, but I know you’ve written a paper on diagnosis and the effects of diagnosis on people with chronic pain.

Munglani: The issue about diagnosis has to be seen in two or three different ways. And the first way to say is that a lot of people wander around in pain and they have no idea what’s causing it and most doctors don’t understand what’s causing it. To give those people the dignity of a diagnosis, I think, is terribly important because it validates the pain and the suffering they’re going through and that’s important.

But pain isn’t the same thing as disability. What we know for some people is that when you give them a diagnosis, they look it up on the internet and they think, ‘oh my goodness! This is how I’m going to end up’. And the worry and the fear actually promotes disability.

So there is a distinction between a diagnosis and a disability. The two aren’t the same at all. In fact, if you look in scientific terms at what is known as a correlation coefficient, i.e. how likely is it with a certain diagnosis, you’ll have a certain level of disability, there is virtually no correlation. And that is quite important because what it says is believing people, giving validation to their pain experience by giving them a diagnosis, the dignity of a diagnosis is important. But you can use that moment then to help them move on and reduce the disability.

The unfortunate option is that people can get stuck looking on the Internet and looking at what horrendous things may happen, and they become fearful. And I think Job said in the Bible: ‘that which I greatly feared has come upon me’. And it is amazing how we are sometimes trapped by our fears. But it also gives us a way forward; that’s important.

There’s no judgment here, and I emphasise that again – there is no judgment. If you look at all pain mechanisms, we are dealing with such a complex issue. An important thing to understand is you can move on from these situations, if there’s a willingness there to move on. Sometimes it’s incredibly difficult and this is why pain therapies sometimes take a long time; you have to go through various trials to find what is the right approach because there’s such different ways of maintaining that pain and the disability that comes along with it.

So, for example, the medical-legal situation is one I’m very aware of because I do so much medical-legal work, is that people get trapped because fundamentally, the money you will get at the end of a court case has to be based on how much disability you’ve demonstrated – not just simply on the diagnosis. [For] the diagnosis there are certain amounts of money you will get for, say, chronic lower back pain or injury or even spinal trauma, but what actually makes the difference and where the big money is, literally, is in whether you can work in the future and what your care costs are – that is where the big money is. So, what is related to not working and how much care you need? Disability.

So the disabling effect of a medical-legal process is profound. And we know for some people, the only way to get them to move on is to end that process as soon as it is humanly possible. For me, then we’ve seen cases where once the court case ends, the people can move on. In fact, one or two people improved so much once the case had ended that the insurers in one case went back and asked for their money back because this guy got out of the wheelchair. It was a big, big case. And the interesting thing is, the court refused because what they said was no, we decided this is how disabled he’s going to be and we said that there was always a possibility he might improve with treatment, and there we are, but he’s improved, so there we are, but the money that we’ve set aside is there for him.

And it was almost a relief to some people because what it meant was that if you had finished a court case and you then got a bit better, would you always be fearful that the compensation you got was going to be taken away from you? Because if it was, think how disabling that would be: it would mean you’d be trapped into a cycle of appearing disabled or being disabled for the rest of your life, so that people would still believe that you were injured in an accident. And so it was quite an important case.

Evans: It’s incredibly important because anybody who’s been through this – through tribunals or whatever – will tell you how stressful it is going through it. It’s box-ticking: you feel you’re box-ticking. ‘Can I walk? Oh no, I can’t walk. But what if I walk tomorrow?’ ‘Don’t even go there. Don’t even get out of your wheelchair.’ And it is enormously stressful.

Munglani: Absolutely. The assessments that a lot of people are going through at the moment through the disability assessment forms from the government – because there, as you know, there is a very strong political drive to get people off disability benefits and back to some sort of work. And in one sense, I applaud that.

The issue is, with pain, I cannot feel your pain; you can’t feel mine. And the actual presentation of disability is dependent on so many factors and, as you say, it’s not whether you can walk, but how far you can walk. So I would say there are two things: there’s capacity – whether you are able to do something at all – and endurance – how long you can do it for – and that, unfortunately, is not really taken into account.

The fact that you can probably pick up a heavy weight two or three times in a day is fine, but you couldn’t do it thirty times seems to be lost on a lot [of people], or certainly they choose to ignore that fact, that most people can do something, but they may not be able to do it for very long. You can do a bit of gardening but you can’t garden all day long and end up with backache.

This is one of the big issues we have in [the] medical-legal process: how much you can do and for how long you can do it. Simply being able to walk doesn’t mean you’re going to be able to work again.

Evans: And for many people – ‘yes, I can do it all today and I may be able to do it tomorrow, but I can’t tell you about Wednesday. And if I do it today, I can tell you categorically that I will be in bed next week.’

Munglani: Yes, yes. And as you know, this leads… Jumping to the solution of what’s known as ‘pacing’. And rather than having the up-down, yes, you do a dramatic amount when you’re feeling a lot better, and then you collapse in bed for two or three days. And then this undulation between the stop/start and you try and regularise that…

I’m not sure, actually – I’m probably going against the grain a bit here – I almost feel it’s very good for the person to have that day of absolutely doing… I mean, I have patients, for example, who are young and in chronic pain and they go clubbing on a weekend, but it does mean that for the next three or four days, they can do virtually nothing. But on the day they went clubbing, they felt alive, they felt normal. And it was terribly important for them to do so. They don’t want to live in the mediocrity of pacing, they went to go to the dizzy heights of dancing for an hour or so and then they know that for the next few days, they’re not going to be able to do anything.

But the interesting thing is, say they were on disability benefits and somebody caught them in a club dancing – and that has happened – there’s cases where, for example, people have been claiming disability benefits and they’ve been caught dancing at a wedding.

Now, does that mean they weren’t disabled? And the answer is, I don’t think so. It’s not as simple as that. Sure, there are cases where there is fraud, but actually, many times, it’s because it’s their daughter getting married or their son getting married and they want to celebrate at that point, knowing there is going to be a cost for them to do that, say, for the next few days, they’ll be in bed. But I think it was important for them to dance at their son or their daughter’s wedding, so whatever for that individual gives them a quality of life, that’s important. But you have to have an understanding society around you and I think that is being lost at the moment.

Evans: Dr Rajesh Munglani.

Don’t forget that you can still download all editions of Airing Pain from painconcern.org.uk or you can obtain CD copies direct from Pain Concern. If you’d like to put a question to our panel of experts or just make a comment about these programmes, then please do so via our blog, message board, email, Facebook, Twitter. All the contact details are at our website, where you’ll also find details of Airing Pain’s companion magazine Pain Matters, which is available as an online subscription or direct by post.

As I say in every programme that whilst Pain Concern believes the information and opinions on Airing Pain are accurate and sound, based on the best judgement available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.

I’ll leave the last words on the changing relationship between patient and doctor to Dr Rajesh Munglani:

Munglani: The patient has to be part of the solution and this is where, in pain particularly, the previous paradigms of what is a doctor-patient relationship… As a consultant, I know when I first started, what I said basically went. We would say, ‘this is the solution for your problem’ and you’d do this. In chronic pain, you can’t do that; you have to be far more flexible. This is why I very much support, for example, the Expert Patient Programme – enablement; empowering patients to help be part of the solution. And it’s not in a sort of fuzzy-wuzzy, sort of well, let’s all just hug and hold each other’s hands – it’s actually a very fundamental difference of how we manage a condition which we know, unfortunately for many, has no cure.

So we have to find a way forward that gives you a quality of life. And sure we can modify the pain by injections, drugs, psychotherapy, etcetera, but in the end, the final common outcome that we all want is a quality of life for that person. So we have to say, what gives you pleasure in life? And what gives you pleasure may be completely different… If looking at model railways is what turns you on, great, but if it’s going clubbing, then fine and you’re going to have very different solutions for that process. So [it’s about] deciding what is good for you.


Contributors:

  • Dr Deborah Padfield, Artist and Researcher, Slade School of Art, University College London
  • Dr Rajesh Munglani, Consultant in Pain Medicine, West Suffolk Hospital, Bury St Edmunds.

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Artist’s impressions of pain in the clinic, and clubbing or model railways? Why living a good life with pain is in the eye of the beholder

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

If only pain were visible…Deborah Padfield talks to producer Paul Evans about her project collaborating with people with pain to produce works of art that represent their experiences. Her photographs are co-creations, using objects and ideas brought to the studio by the orofacial pain patients from University College Hospitals, London.

The art produced not only provides a voice for individuals who may have felt their experiences marginalised by the medical establishment and wider society, but is also part of a study aimed at finding better ways for people to communicate their pain. Images created by Padfield – from a clenched fist to flying sparks – are now being trialled by patients not part of the project as visual prompts in ordinary medical consultations.

‘Pain is a memory’, says Dr Rajesh Munglani, explaining how the way we feel pain is affected by past experiences and our emotions. From the phantom limb pain of a soldier wounded in action to an injured motorist caught up in a bitter legal struggle for compensation, the context of chronic pain can be crucial in helping or hindering people from moving on. The different ways people perceive their pain also means, Dr Munglani argues, that perhaps pacing is not right for everyone, all of the time – a big night out might mean a few days in bed for a teenager with pain, but provide an important boost to their confidence.

Issues covered in this programme include: Arts and crafts, orofacial pain, communicating pain, pain perception, neuropathic pain, trigeminal neuralgia, visualisation, memory, amputation and phantom limb pain.


Contributors:

  • Dr Deborah Padfield, Artist and Researcher, Slade School of Art, University College London
  • Dr Rajesh Munglani, Consultant in Pain Medicine, West Suffolk Hospital, Bury St Edmunds.

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

 

Prescriptions for yoga and harnessing the power of social interaction

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

In Airing Pain episode 55 we hear about two very different ways of giving people in pain the knowledge and power to help themselves.

Will we soon be able to get a prescription of yoga on the NHS? Christine Johnson speaks to yoga teacher Anna Semlyen about a study that shows yoga can be an effective and cost-effective treatment for chronic low back pain. Semlyen, who helped design the programme used by the research trial, recalls how she has seen people get back into gardening or extreme sports after taking up yoga. The research study found a similar effect among the group of patients using yoga: reduced levels of disability and fewer days off work compared to the control group. Not only is this a low-tech and cheap treatment, but it’s also empowering, argues Semlyen, as it lets people ‘be their own healers’.

‘How are you?’ Three little words often dreaded by people in pain. Gareth Parsons explains to Paul Evans why these simple social rituals can be so difficult for people in pain and how social interactions can instead be made empowering. Parsons’ work on participatory action research gets people in pain together to recognise the negative attitudes or oppression experienced in daily life and find ways to help themselves. The real experts on pain are not the clinicians of researchers, but the people who live with it every day, he argues.

Issues covered in this programme include: Alternative therapy, yoga, social contact, arthritis, back pain, medical research, raising awareness, peer support, exercise, stretching, physiotherapy, the biopsychosocial model, pain as a condition in its own right, relaxation therapy, mindfulness, activity-rest cycle, discrimination, oppression, stigma and relationships.


Contributors:

  • Anna Semlyen, yoga teacher, British Wheel of Yoga
  • Gareth Parsons, Lecturer, University of South Wales.

More information:

  • You can find out more about using yoga to help with lower back pain and buy the yoga programme book and accompanying CD from the project’s website: Yogaforbacks.co.uk.

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

 

Prescriptions for yoga and harnessing the power of social interaction

To listen to this programme, please click here.

In episode 55 we hear about two very different ways of giving people in pain the knowledge and power to help themselves.

Will we soon be able to get a prescription of yoga on the NHS? Christine Johnson speaks to yoga teacher Anna Semlyen about a study that shows yoga can be an effective and cost-effective treatment for chronic low back pain. Semlyen, who helped design the programme used by the research trial, recalls how she has seen people get back into gardening or extreme sports after taking up yoga. The research study found a similar effect among the group of patients using yoga: reduced levels of disability and fewer days off work compared to the control group. Not only is this a low-tech and cheap treatment, but it’s also empowering, argues Semlyen, as it lets people ‘be their own healers’.

‘How are you?’ are three little words often dreaded by people in pain. Gareth Parsons explains to Paul Evans why these simple social rituals can be so difficult for people in pain and how social interactions can instead be made empowering. Parsons’ work on participatory action research gets people in pain together to recognise the negative attitudes or oppression experienced in daily life and find ways to help themselves. The real experts on pain are not the clinicians of researchers, but the people who live with it every day, he argues.

Issues covered in this programme include: Alternative therapy, yoga, social contact, arthritis, back pain, medical research, raising awareness, peer support, exercise, stretching, physiotherapy, the biopsychosocial model, pain as a condition in its own right, relaxation therapy, mindfulness, activity-rest cycle, discrimination, oppression, stigma and relationships.

Paul Evans: Hello and welcome to Airing Pain, a programme brought to you by Pain Concern, a UK-based charity working to help, support and inform people living with pain and healthcare professionals. This edition’s been funded by a grant from the Scottish Government. Today, I’ll be looking at two research studies on the management of chronic pain, the outcomes of which, if accepted and adopted by the NHS [National Health Service], would not only improve the quality of our lives, but save money.

Anna Semlyen has been involved in teaching backcare yoga for around 18 years. She was involved in a randomised control trial by the University of York with funding by Arthritis Research UK into the effectiveness of yoga as a treatment for chronic and recurring low-back pain. Over 300 adults were recruited from 39 GP practices across England. They were randomly divided into two groups: one assigned to the Yoga for Healthy Lower Backs 12-week course developed for this trial; the other, to a non-yoga group.

Pain Concern’s Christine Johnson went to meet her.

Anna Semlyen: We were trying to encourage people to do, in some ways, the minimum amount of exercise that would be needed to maintain back health. So we used 22 other research trials and synthesised them into what the minimum amount of exercise is, and variations on those exercises, that would give you all-round flexibility, strength, comfort and ability to function well within your body. It was designed for people who had no awareness – absolutely beginner therapeutic on-the-floor-type yoga. So you need a reasonably warm venue. You need people to feel quite safe. The yoga programme was designed for all kinds of lower back problems – whether you had a slipped disc, whether you had sacral pain caused by an imbalance in the sacroiliac joints or one side of the pelvis further forward and twisted compared to the other, the programme can deal with it and [help people] find comfort and ease of movement.

We found that originally, people in our trial referred from their GP had about eight different problems on a scale called the ‘Roland Morris Disability Questionnaire’: problems like not being able to put on their socks without pain from their back or sleeping less well because of their back. Three months into the trial, the yoga group had two and a bit less problems than the group who had gone just to GP care. What we’ve proven is that… statistically valid results for yoga within 3 months carry on for a whole year of benefits after starting classes.

We also found that people were very safe practising yoga – there were not any serious adverse events in the yoga group. We found that it was cost-effective. Its main effect was to reduce the number of days off work by eight over the year between the two groups, with the yoga group doing significantly better.

We also had yoga teachers from two different traditions teaching: we had British Wheel of Yoga teachers – I’m the British Wheel of Yoga’s specialist advisor on backcare and therapeutic research – and we also had Iyengar Yoga teachers, so we helped bring two yoga organisations together and proved that teachers from different traditions could both teach a standardised programme. This was not in any way a sort of yoga-teacher-do-what-you-like programme; there were written, class plans that each teacher was made to follow, and somebody came in to quality-check that they were doing the exercises in the right order, to the right amount of time and with the right props.

So, it works, it’s safe, it’s cost-effective and it’s [been] proven with a proper, randomised controlled trial on a large study. So it was like having a prescription of yoga.

Christine Johnson: From your own experiences, could you tell me about some of the benefits you’ve seen in people you’ve taught or how their daily lives have changed because of doing yoga?

Semlyen: Do you know – this work is just fantastic for job satisfaction because people tell me that their lives are transformed? A lady who, for instance, had a large garden and wanted to retire to her gardening, found that she couldn’t garden anymore and this had completely blown her vision of what her later years would be like. She needed help with this large garden and was thinking of having to move because she couldn’t cope with it. She did my course [and] she’s a happy gardener. It’s made her feel independent again.

There are people who are in their 20s [with] back pain, and they are seriously worried that they won’t be able to keep their jobs or find a partner because of their back pain. So it’s transforming the other end of the spectrum in terms of ages. And it very much helps people to feel well. Of all the issues in our lives, yoga teachers recognise that health is very, very important, and when you have good health, everything else is easier – whether it’s working or playing with your children or doing the sports that you love to do. I’ve had people go back to canoeing, for instance, that they enjoy but weren’t able to safely do because if they had a back spasm, what could they do? I’ve had people go back to rock-climbing and quite adventurous activities because they’ve done the course and feel better.

I’m sure it’s saving marriages; I’m sure it’s saving people’s jobs. If back pain is actually keeping you away from jobs that you would otherwise be doing, then learning a simple set of exercises is a massive transformation in people’s quality of life.

Johnson: Now that this research has been published and people can really see the results, what knock-on effect do you think it could have or do you hope it could have?

Semlyen: First of all, we hope that a lot of yoga teachers will train, maybe 500 in the next year or two. Secondly, that the NHS will buy yoga, now that yoga has an evidence-base. It’s medically proven to work for people suffering [from] chronic and recurrent lower back pain, which is a huge burden on society, so the NHS should buy yoga – that’s what the research says. Thirdly, that yoga will become something that is more normal as an activity for anybody who has restricted mobility because of their back. They will feel confident [about] doing yoga, particularly with a trained yoga teacher – because this is specialist yoga. There are types of yoga that are too vigorous for people with backache. In searching out a yoga teacher, you want somebody who does specialise in back pain, to be sure that you’re safe with them. So, yoga is something that GPs ought to be buying their patients and I hope that yoga will become free on the NHS.

Certainly as the NHS changes away from the primary care trust towards clinical commissioning groups at GP-level, I can imagine yoga being a very important part of the future of the NHS. For instance, you want people to come to local clinics, rather than main hospitals and a yoga class could be taught at a GP practice, I think, or a local hall. We used non-NHS premises in our trial – we used community centres and schools and the like, and found that it’s very low-tech. A minimum amount of props would be a yoga mat, the book, the CD, possibly something to put underneath your head like a book or a yoga block. We encourage people to use a blanket, we encourage them to use a chair, sometimes we use belts, but they weren’t anything special – they could just be dressing gown belts. So you’ll have most of the equipment at home already. Compare it to an MRI scan or something like that to find out exactly what kind of functional problem there is – but, actually, we’re offering functional solutions.

Evans: That’s Anna Semlyen talking to Pain Concern’s Christine Johnson. For further information on that research, the book and CD developed for the trial, and how to find a qualified teacher, go to the Yoga for Backs website. That’s yogaforbacks, no gaps, yogaforbacks.co.uk.

As I say in every programme, that whilst Pain Concern believes the information and opinions on Airing Pain are accurate and sound, based on the best judgements available, you should always consult your health professional on any matter relating to your health and well-being. He or she is the only person who knows you and your circumstances, and therefore the appropriate action to take on your behalf.

Now, chronic pain is described as a bio-psycho-social phenomenon, meaning it affects and indeed is affected by biological, psychological and social influences. Its treatment using the biomedical model is now well-established, but is the social domain of pain given the same emphasis? Participatory-action research is the approach to research in communities that aims to empower participants through seeking transformation of exposure to similar others, reflection on self and consciousness-raising. Sorry, but that’s gobbledygook to my small mind, so what’s it mean? Gareth Parsons, who’s a clinical nurse specialist in pain management, now a Senior Lecturer at the University of South Wales, is passing on his experience to student nurses… and me.

Gareth Parsons: Unlike conventional research where a participant would normally be viewed as maybe a passive subject who’s trying out a drug treatment or, in a qualitative piece of research, as somebody who’s being interviewed, just as you’re doing to me now – participatory-action research involves groups of people discussing their lives and coming to some kind of new form of knowledge based around that discussion.

Evans: So that’s the theory. Gareth’s been using the method in his own PhD research to find out whether the lives of patients of chronic pain would benefit from collaborating with each other in their own learning communities. The participants for three such learning communities were recruited from a pain clinic and a general practice in South Wales. Now, over the last few years of making these Airing Pain programmes, if there’s one thing I’ve learnt, it’s that there are plenty of experts in pain management for us to turn to. So what could we lay members of the pain community – the patients – add to the wealth of knowledge that’s already out there, Gareth?

Parsons: I’ve worked in a clinical practice in pain for seven years before I came here, I teach students about pain management, I’ve written a book on the subject… so in a way, you might say that I’m an expert in pain, but my knowledge of pain is theoretical. If we think about chronic pain as being an entity in its own right, then the only people who really have expertise in it are those who have chronic pain. Everything else is theoretical: we don’t really know what it’s like. We might know how to help people or we might have some ideas of how to help people, but we can’t help people if we don’t acknowledge the fact that they are the experts.

Evans: What’d you mean by acknowledging pain as something in its own right? I have a condition, it’s called ‘fibromyalgia’.

Parsons: When somebody has a condition, of whatever sort, one of the symptoms of that condition might be pain. And if you view pain as just a symptom, then you’re going to try and treat that symptom without looking at the whole person. I believe that when somebody has pain, it affects them at a personal level: it affects who they are and [I believe] that people in pain are different to how they are when they aren’t in pain. That means that people with different conditions who have pain have something in common with each other. To say to somebody ‘you’ve got fibromyalgia’ or ‘you’ve got osteoarthritis’ or ‘you’ve got a bad back’ or ‘you’ve got trigeminal neuralgia’ is to categorise them into their condition and is to ignore the impacts that condition, and the problems that arise from that condition, impose upon them in their lives. So somebody with chronic pain is restricted in what they can do in their lives: it affects them in lots of different ways.

Not everybody’s affected in the same way, but there are similarities. And as an expert in pain, I’ve been taught a lot about how to manage the symptom of pain. A lot of that comes from treating acute pains, which largely involves physical treatments on a biological entity. More recently, we’re coming to think about pain as something that has psychological dimensions. There are treatments out there now which explore cognitive aspects of pain, behavioural aspects of pain… and they’ve been shown to be very effective. But an area of pain which is overlooked is the social aspect of pain. When people are learning together, they’re leaning in a social context and that social aspect, I think, has been overlooked in research.

Evans: What do you mean by social aspect – which social aspect?

Parsons: If we go back to where I got the idea for my research from, first of all. When I started off as a clinical nurse specialist, I was working in a district general hospital. I was an acute pain nurse and a chronic pain nurse. We were developing a chronic pain clinic and we were looking at interventions that I could do as a nurse in the chronic pain clinic. So it wasn’t just about giving people drugs and giving them injections, we were trying to explore other things as well. And one of the things that we were interested in exploring was this idea of mindfulness – I guess you could think about it as relaxation therapies, but a bit more than that as well: body consciousness, being aware of what your body’s doing. So we put on classes for people – we called them ‘relaxation classes’, but they were really more about the idea of mindfulness.

What I found was that the patients who were taking part weren’t really listening to us when we were instructing them on how to do relaxation techniques – they were too busy chatting to each other. We thought, first of all, that this was a bit of a – you know, what’s going on here? We thought it’d evaluate very badly because people weren’t really picking up their relaxation lessons, they weren’t really putting them into practice. But they kept coming back and they kept coming back and they wanted more and more. Initially, we just did a 6-week programme – people come for a couple of hours once every 6 weeks, [but] they wanted more and more.

There was something about the social interaction that was going on. The social interaction wasn’t intended – what was intended was that I would be the expert teaching people how to relax, because I’d done a course on relaxation therapies and mindfulness. So I was going to share that expertise with them. They circumvented that; they broke the rules and interacted with each other. That made me think there’s something going on here, there’s social interaction. It evaluated very well. This was a time of GP fund-holders and GP fund-holders were telling us that their patients liked it and they’d like to do some more because they were willing to pay for it. So that started off a germ of an idea: it’s not what we were offering them that was helping them, it was the interaction with each other, because we were doing it within a group.

So that started off my idea that there’s something about people sharing stories within a group. In my role as becoming an educator, one of the educationalist theories that I came across was [by] somebody called Paulo Freire. He wrote quite a famous book called The Pedagogy of the Oppressed. He was working in Brazil at a time when, if you couldn’t read and write, if you weren’t literate, you couldn’t vote. So he was training people who couldn’t read and write to read and write. And in doing so, they were getting the vote, they were becoming empowered. So he linked the idea of educating people to the idea of liberation from some kind of oppression.

So that was one area that I was interested in: people becoming conscious of their social condition and thinking about how sharing those experiences amongst each other enabled them to develop what Freire called ‘consciousness-raising’. As you explore your life, you develop awareness – you become conscious of how your life is limited. That’s the first action in becoming empowered.

Evans: I’ve heard similar expressions with the term ‘disability’. [Parsons: mm-hmm] What does ‘disabled’ mean – is it a person’s physical condition that is disabling them, or is it society’s attitude and reaction to that person that is the disabling factor; who is disabling who? And that’s the same as oppression, I guess.

Parsons: Yes. When I started off, my idea was having chronic pain imposed physical limits on somebody – not just physical limits, because it’s a bio-psycho-social problem, I recognise that, so it also imposed limits in terms of their thoughts and their behaviours and their ability to interact with other people. I thought it was being pain that was the oppressor, [but] through doing my research and working with my co-participants, I’ve come to realise that that’s only part of the story and the other part of the story is, as you say, the way people respond, the way people behave towards people who have pain, contributes towards their pain.

So, the social interactions that they have with others, creates a situation which contributes to their oppression. But people aren’t aware of this and the people who are oppressed – the people in pain – also buy into this through their lack of consciousness and they are also involved in oppressing themselves and also oppressing other people with chronic pain who aren’t like them.

Evans: So who is the oppressor: the pain, the person with the pain or the person without the pain?

Parsons: This is the interesting thing, because a lot of these interventions that were designed to help people in pain or with any chronic illness, if you take diabetes, for example, they are all about encouraging self-management. If you look at the writing on self-management, it talks about it being empowering. So the idea is that nurses who work with people with diabetes are involved in empowering people with diabetes. Or people who go to cognitive-behavioural therapy for their chronic pain are being empowered by the therapy.

Now that’s nonsense – because you can’t empower somebody else. The only person who can empower somebody is yourself – only you can empower yourself. Now what you can do is create a set of conditions which allow people to become emancipated – similar, I guess, to slavery. If you look at what happened in America, when slavery was abolished, black people were still oppressed. Getting rid of slavery didn’t stop people being oppressed. In a way, you could say that pain is like slavery, in that it’s a condition which people might say that’s oppressed them, but the reality is, it’s the attitude towards people who are in pain and also the attitude that people in pain hold about themselves and their abilities, which is the oppressor.

Evans: Going back to what you said about you being the expert talking to the group of patients [Parsons: yes] and them basically ignoring you [Parsons: yes] and finding each other [Parsons: yes], I’ve been in that situation [Parsons: mm-hmm] through the Expert-Patient Programme [Parsons: yes]. I found when I did that, that actually there was nothing much new that I hadn’t read in the books because I’d done a lot of reading; I knew all the theory as well, but the real benefit was being in that group and being allowed to smile with other people in pain, where pain actually doesn’t become the focal point of the meeting.

Parsons: Now that’s interesting, because that’s similar to what I found in my study. If you think about it, the reason why people are being brought together by me is because they’re in pain. But when we actually got together, although we talked about pain and we shared stories about that, we also talked about a lot of other things as well, including, what the weather was like and what was on the telly and what books I’d read, what their hobbies and interests were. Because these topics weren’t about pain, I wasn’t initially interested in those, but I came to realise quite quickly that was important – this sharing, this being able to open up to each other and tell people things. They were sharing things with people who were relative strangers that they couldn’t share with their family or their friends or their GP, because it would sound ridiculous. They’ve never felt able to share those things because they thought they won’t be believed – ‘oh, it’s just so-and-so moaning again about their pain’. They’ve learnt to keep quiet about it.

One of my participants described the fact that she didn’t like to think of herself as Mrs Never-Well. This meant that she was always guarding what she was saying. She didn’t explain to her husband or to her children how she was feeling; she tried to hide it from people. When she went to her doctor, it was ‘how are you, Mrs So-and-so?’ – ‘I’m fine, thank you, doctor.’ That’s her first response, even though she’s got a problem. Within the groups, there became a kind of joking about this: ‘I’m fine, but…’ This way, they had to develop a means of communicating with other people in order to get their message across about their pain. It was a defence mechanism, really, but it was also a way of controlling the communication that they had. It was a way of them placing themselves in charge of the communication with others so that they could dictate… they were subverting their relationship, their communication with their GP.

Evans: That’s a really interesting point again, because I found one of the worst questions that I could be asked is ‘how are you doing?’ And normally, I’d say ‘fine’ – if you’re asked ‘how are you feeling’, the last thing you want to say is ‘I feel total rubbish. I’m glad you asked. Let’s go through it together.’ Nobody wants that.

Parsons: No. And I actually use this as a scenario with my students. I give them the example of they’ve somebody in a supermarket they haven’t seen for a long, long time. And they ask them how they are, and their friend talks about their bad back, and half an hour later, they’re still telling them about their bad back and the ice cream’s melted and the children are playing up and the husband’s walked off and gone and sat in the car, tooting the horn, waiting for them to come out… Anyway, they finally manage to get away from their friend. The next week, they see their friend in the supermarket and they have a choice, because their friend hasn’t seen them: do they go up and say hello again or do they dodge down the aisle and hope that their friend hasn’t seen them? You can imagine what the response is from the students and it’s a normal human response, because when we ask people how they are, we’re not interested in how they are, we want to tell them how we feel. It’s just a part of the social glue. It’s another way of saying hello.

Evans: What major outcomes have come from your research, do you think?

Parsons: There were two full learning communities that were sustainable over time and we were able to work through a 10-week process together. Both groups had a problem with communicating with healthcare professionals and others. And how they dealt with that; how they realised that and they had to take some kind of ownership of that communication. They talked about the hard life of having chronic pain; they talked about going through cycles of having to repeat treatments when they saw new doctors, that they knew wouldn’t work, but they had to do it because if they didn’t do it, they would be viewed as being non-compliant, which, as one lady put it, was the death knell – as soon as you’re labelled as non-compliant, that’s it, you’re out.

One of the other things that they came across was accepting the need to make adjustments. They were kind of fighting the need to make adaptations in their lives – they were trying to carry on as they were before their pain. When they had good days, they were overdoing it and then suffering as a result, which we all know, I think it’s been called ‘activity cycling’ or various other [Evans: Boom and bust] …boom and bust kind of approach to things.

An example would be, because these were all ladies in this group, they were talking about doing housework – how their husbands didn’t notice that the house hadn’t been dusted for a week, so why did they have to do it every single day? Why were they so hard on themselves? So they talked about ways that they could maybe make allowances for themselves, forgive themselves for not doing so much.

And then other learning community, they looked at ways that they could learn to adapt to their pain – not the same as making adjustments – it was about coming to some kind of accommodation with their pain, some kind of understanding as to how they could fit pain into their lives. Whereas, they’d been fighting it before and maybe they had to sort of realise that it wasn’t going to go away and they had to adapt to having pain. And the participants worked at individual ways of doing that, but in a shared, collaborative way.

So that is a new thing, that people can come together and teach each other about that without having an expert come in and tell them how to do it. Doing it in an informal way, in a way that seems disorganised, because when we sat down at the
beginning of an evening, we didn’t know where we were going to end up two hours later. From the point of view of an outcome, if I think about my research question, which was ‘can you set up learning communities with people who have chronic pain?’, then yes, you can.

I had this wonderful idea that I would be able to recruit about 10 people and have them come every evening for 10 weeks and keep them there all together. I soon learnt, quite early on, that that wasn’t feasible: I had a high drop-out. One group, I ended up with about six people; another group, I ended up with five. But what was interesting was instead of the drop-outs killing the communication, they actually contributed towards it. So people who left actually made the people who stayed think ‘why am I staying? Why am I interested in this?’ They made comparisons to the people who left – ‘what is it [that’s] different about me to them?’ So it helped them explore themselves and develop their own self-awareness: ‘am I open to this [while] they’re not?’

Evans: Going back to the point you were making about participatory-action research, that when you came into it, you [were] the theoretical expert [Parsons: mmm] whereas the patients were actually the expert [Parsons: yes], was it right that you should be doing the research, or perhaps should the patients have been doing the research?
Parsons: Ideally, participatory-action research should be something which is thought of by the participants, designed by the participants; [something that] participants take part in. They also take part in any analysis of the findings and in the actual production of a discussion and conclusion and further research.

Evans: So guide me through this: if a self-help group [Parsons: yep] wanted to set up research like this [Parsons: yes], how would they go about it?

Parsons: They could either do it all themselves just for the fun of it, I guess, or just to generate their own knowledge; or they could approach an academic and say, ‘we have a problem [and] we’d like you to help us explore it’; or they could become the academics themselves. That would be the ideal.

Evans: But what would the benefit be to the participants?

Parsons: The whole point of participation research is it’s not about benefits for anybody else; it’s about benefits for the participants. They would learn more about themselves. They would learn more about their lives, perhaps gain in confidence, gain in self-esteem, produce something meaningful to themselves, be able to explain things to other people…

Evans: So it’s removing the oppressor.

Parsons: Yeah, because it’s all about raising awareness; raising consciousness; empowering yourself. And when you’re empowered, you’re less likely to be oppressed.

Evans: That’s Gareth Parsons, senior lecturer at the University of South Wales. Don’t forget that you can still download all editions of Airing Pain from painconcern.org.uk or you can obtain CD copies direct from Pain Concern. If you’d like to put a question to our panel of experts or just make a comment about these programmes, then please do so via our blog, message board, email, Facebook, Twitter. All the contact details are on our website, and once again, it’s painconcern.org.uk. On the website, you’ll also find details of Airing Pain’s companion magazine Pain Matters, which is available as an online subscription or direct by post.

Okay, to end this edition of Airing Pain, I’ll leave you with maybe a controversial thought to take away and discuss at your own learning community: does what Anna Semlyen now say just apply to yoga?

Semlyen: Low-tech healthcare has to be the future, really. We’ve got to go towards things that are both effective and cheap and yoga fits those two categories very, very well. It allows people to be their own healers and isn’t that a fantastic thing that you can choose to be?


Contributors:

  • Anna Semlyen, yoga teacher, British Wheel of Yoga
  • Gareth Parsons, Lecturer, University of South Wales.

More information:

  • You can find out more about using yoga to help with lower back pain and buy the yoga programme book and accompanying CD from the project’s website: Yogaforbacks.co.uk.

     

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Airing Pain, the popular digital radio programme for people living with chronic pain, will return to the airwaves for a fourth series on Tuesday 22 April at 8pm.

Tens of thousands of listeners tuned into the last series and Pain Concern hope that many more will discover Airing Pain this time around.

The first programme will take a look at two very different ways of giving people in pain the knowledge and power to help themselves – yoga and asking “how are you?”

Christine Johnson speaks to yoga teacher Anna Semlyen about a study that shows yoga can be an effective and cost-effective treatment for chronic low back pain. Semlyen, who helped design the programme used by the research trial, recalls how she has seen people get back into gardening or extreme sports after taking up yoga.

Meanwhile, the real experts on pain are not the clinicians or researchers, but the people who live with it every day, according to academic Gareth Parsons. His research looked at how social rituals as simple as asking “how are you” can be difficult for some people living with pain and how people can find ways to help themselves.

Other subjects to be included in the nine programmes include spinal cord stimulators, young carers, and interviews with people who manage their own everyday pain and internationally-recognised experts.

Airing Pain is produced and presented by Sony Award-winning BBC broadcaster Paul Evans, who says he has discovered knowledge with a ‘life-changing’ impact for his own chronic pain while working on the show. Paul’s experiences are shared by many others, with 80% of listeners surveyed saying they find the radio programmes helpful and 90% saying they would recommend them to others.

New programmes will be broadcast weekly, starting on Tuesday at 8pm on the digital station Able Radio. It is then be available to listen or download on painconcern.org.uk alongside all 54 previous editions.

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Pain Concern is developing a database on interested volunteers who feel they could share their experiences of living with pain with the Media.

The Media don’t want a medical definition of chronic pain. We can give them the information. Their enquiries are more than this. They want to speak with someone who endures it on a daily basis and the impact it has.

Sharing your stories with others is integral to our key message of promoting greater understanding.
Anyone interested please contact the Pain Concern office on 0131 669 5951 or email: editorial@painconcern.org.uk.

Please visit our Volunteer page to find more about volunteering for us.

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This survey is now closed

Pain Concern would like to invite you to an online survey of our Pain Matters magazine. You can take the survey by following the Pain Matters Survey link.

Since 1995 Pain Matters has been a valuable resource for many people living with pain and healthcare professionals. In 58 editions of the magazine we have brought news, features and comments on pain management, research into treatments and personal experiences of living with pain to our readers. The publication has evolved from its early days as a support group newsletter to a full-colour magazine reaching readers across the UK.

We are constantly trying to improve Pain Matters and would welcome your thoughts on the magazine. The survey should take between 5 and 10 minutes and at the end respondents will have a chance to be entered into a prize draw for a £20 Marks & Spencer voucher.

Please go to the Pain Matters Magazine webpage to read more about the magazine and find out how to purchase or subscribe.

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A film ‘Struggling to be me’ exploring patients’ experiences of living with chronic musculoskeletal pain, received over 2,000 hits on NIHR youtube within a 12 week period.

This film presents the findings from a National Institute of Health Research (NIHR) Health Services & Delivery Research (HS&DR) project [1] grant to a team of senior qualitative researchers [2] led by Dr Fran Toye from Oxford University Hospitals NHS Trust.

Many people suffer with longstanding pain that sometimes cannot be explained. The research team aimed to understand what it is like for someone to live with chronic pain, with a view to improving people’s experience. The research team identified 77 studies exploring over 1000 adults’ experience, and brought these findings together. With the help of media professionals, the film was then scripted from authentic words and performed by an actress.

The overriding theme portrays chronic pain as an ADVERSARIAL STRUGGLE, giving the person a sense of feeling guilty until proven innocent: I am no longer me and constantly battle against my body; I tend to focus inwards towards my body rather than towards my future; no one is explaining my pain and people don’t believe me; I feel like a shuttlecock and just want to be heard and valued; I have to prove that I am in pain but don’t want people to think that I am constantly complaining. I just want to be me. The findings from this NIHR funded study describe the following themes that helped some people to MOVE FORWARD alongside their chronic pain.

  1. This futile search for a cure is draining me of the energy I need to move forward.
  2. I am developing a relationship of trust and cooperation with my body.
  3. I am focusing on re-building a new sense of self and re-discovering things I enjoy.
  4. I am letting other people know my limitations and don’t feel I have to hide my pain.
  5. I can share my experiences with other people.
  6. I am gaining the confidence to experiment and make my own choices with other people’s help.

You can watch the film ‘Struggling to be Me’ by clicking on the following link to NIHR youtube.

Feedback for the video is welcome. In particular the researchers would be grateful to learn:

  • How do you feel when you watch this film?
  • In what way is this like your own experience?
  • In what way is it different to your own experience?
  • Who do you think would find this film useful?

You can comment below or send feedback to info@painconcern.org.uk


[1] Toye F, Seers K, Allcock N, Briggs M, Carr E, Andrews J, et al. A meta-ethnography of patients’ experiences of chronic non-malignant musculoskeletal pain. Health Services and Delivery Research. 2013;1(12):1-189.

This project was funded by the NIHR Health Services and Delivery Research programme (project number 09/2001/09). The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the NIHR HS&DR programme, NIHR, NHS or the Department of Health

[2] Francine Toye, Qualitative Research Lead, Nuffield Orthopaedic Centre, Oxford University Hospitals NHS Trust, Oxford. Kate Seers, Professor and Director, Royal College of Nursing Research Institute, School of Health & Social Studies, University of Warwick. Nick Allcock, Professor, School of Health and Life Sciences, Glasgow Caledonian University, Glasgow. Michelle Briggs, Professor of Nursing, Institute of Health and Wellbeing, Leeds Metropolitan University. Eloise Carr, Professor, Faculty of Nursing, University of Calgary, Alberta, Canada. Karen Barker, Clinical Director (Musculoskeletal), Nuffield Orthopaedic Centre, Oxford University Hospitals NHS Trust, Oxford. Senior Research Fellow, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Science, University of Oxford

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A new online petition is calling for the UK health authorities to improve the way they treat people in pain.

The petition, launched by Jean Gaffin, Pain UK’s Pain Champion for 2013, is intended to build a groundswell of support to pressure the UK Department of Health and the organisations responsible for setting standards of care to ensure that health and social care professionals help people living with pain by asking about their pain, measuring it, recording it, treating it and managing it at every opportunity.

As the petition points out: if asking about pain was as routine as taking a temperature or blood pressure, people living with chronic pain could be helped routinely and regularly to manage their pain and have it treated effectively.

Please join us in supporting this important cause by signing the petition and passing on the word. It can be accessed here: http://epetitions.direct.gov.uk/petitions/58377

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Delving into the issues surrounding opioids and healthcare within prisons and investigating the relationship between memory and pain

To listen to this programme, please click here.

 Paul Evans talks to Dr Cathy Stannard, a Consultant in Pain Medicine at Frenchay Hospital in Bristol, who outlines the use and misuse of opioids in chronic pain management. She points out that whilst opioids are a useful analgesic for some people, they can have a detrimental effect on others due to their strong side effects. She emphasises the need for healthcare professionals to be aware of how to use opioids effectively as a pain management resource.

Paul also meets Dr Rajesh Munglani, a Consultant in Pain Medicine in Cambridge, who has carried out research into the relationship between pain and memory. He describes chronic pain as a circuit that can be triggered by seemingly small events or memories and highlights the importance of context and memories on pain. He explains that medical or psychological intervention is needed to disrupt the circuit of pain.

Then Paul speaks to Dr Cathy Stannard and Dr Ian Brew, a prison GP, about healthcare within prisons. Stannard reveals some problems in this area, saying that some medicines are a tradable commodity in prisons and that often prisoners’ accounts of pain are treated with mistrust. She reports that the situation is improving, as the healthcare needs assessment that prisoners receive when they arrive in prison now includes a section on pain, alongside the original sections on substance misuse and psychiatric disorders. Dr Ian Brew emphasises that prisoners deserve to receive the same quality of healthcare as those outside of prison and says evidence suggests that good healthcare, alongside other rehabilitation initiatives in prisons, can reduce the rate of re-offending.

Issues covered in this programme include: Opioids, side effects, educating health professionals, prison, pain memory, psychology, drug overuse, drug misuse, dosage, over-prescription, under-prescription, triggers, sensory memory, associations, amputation, phantom limb pain, neuropathic pain, medical research, psychiatric disorder, mental health, confidence and self-esteem.

Paul Evans: Hello. Welcome to Airing Pain, a programme bought to you by Pain Concern, a UK based charity working to help, support and inform those of us who live with pain and healthcare professionals. This addition has been supported by a grant from the Scottish Government.

Opioids are drugs which either come from the opium poppy plant or are chemically related to those made from opium. Stronger opioid drugs include the likes of morphine and fentanyl. Their use, overuse or abuse still creates confusion amongst patients and some health professionals. Dr Cathy Stannard is a consultant in pain medicine at Frenchay Hospital in Bristol. A leading expert in the use of opioids, she was chair of consensus group and editor of the British Pain Society guidelines on Opioids for Persistent Pain: Good Practice. In 2013 she gave a lecture to the society under the heading ‘When the cure is worse than the disease: strategies for safe opioid prescribing’.

Dr Cathy Stannard: What is behind all that is that, particularly in North America, they have a huge problem with misuse of prescription drugs and I think that’s largely about different choices that drug users make and the availability of prescription drugs is much easier, for example, in getting hold of heroin in the States, so prescription drugs are commonly a drug of abuse.

Now, this had led to a great deal of public and policy concern about the amount of prescription drugs I guess out there in the system. So what’s happening is that there’s been a great move to restrict clinicians or to try and educate clinicians to very much focus on who and for how long they target opioid medicines for. Now the thing that’s a real public health problem, and I’ve worked with colleagues in the States,  and I think they are tackling it responsibly – but I think what is a risk here is that we are concerned about what essentially are drug misuse practices in the States and maybe let that influence unduly our decision to treat the patient that’s in front of us, who actually might benefit from opioids. Now, I think how it gets complicated is that as many people understand, chronic pain is really difficult to treat and what we end up doing most of the time is supporting people in their self-management strategies to improve their quality of life and all the various things we offer patients in terms of medical intervention are not very helpful.

So almost any sort of intervention you think of, whether it’s a tablet or whatever will help about a third of people. Now that means that even very strong medicines like morphine are not going to help everybody: there are going to be more people that they don’t help than they do help. And there are quite a lot of side effects of the drug. And I guess that what I am trying to support is the idea that we don’t put people on morphine-like drugs and because there is nothing else, leave them exposed to all the harms of those drugs. But that we assess people and if they are helping, if the drugs are helping to improve quality of life, we support them on staying on them. But if they are not helping we take them off. And I think it’s just about trying to target what is quite a strong class of medication with quite a lot of side effects, just trying to target it to people who are definitely getting the benefit.

Paul Evans: So is there or was there a danger, that if the morphine is not working now then just ‘up the dose and up the dose and just keep going’?

 Dr Cathy Stannard: No, and I think it is a very interesting point and I think that’s maybe where we’ve gotten in a bit of muddle because the traditional teaching over decades ago for treating patients with cancer-related pain at the end of life, is if the correct dose is enough. So, if the first dose doesn’t work, then double it, and double and double it. Now that would maybe work well for cancer pain in the short term at the end of life, so this is not for cancer pain with patients who have a long prognosis. It might also work for very short term pain like post-operative pain.

But I think that’s a really important point because what we know from the literature about doses for long term pain is that there comes a point at not a very high dose, where when you put the dose up you get more harms but you really don’t get any more benefit. So there is a rationale for starting somebody on a drug and then adjusting upwards a few times to get to a reasonable dose, but there comes a point when there’s not going to be a benefit in taking the drug higher and I think that part of the problem is that people have borrowed from what we know about cancer pain and felt that if a drug isn’t working it’s because it’s not being given in enough dose and the drug dose goes up and up and up and eventually the dose gets turned up to a level that is just not helpful to people’s quality of life, because they can’t concentrate, they can’t invoke self-management strategies and they have other side effects.

Paul Evans: I was speaking to somebody few weeks ago, who I suspect is in that situation and he is desperately trying to reduce his dose to come off the drugs so that he could maintain some quality of life but balance the pain along with it. Is that usual?

 Dr Cathy Stannard: I think that is and I talk a lot to prescribing doctors about this, and actually I think patients have a much better understanding. Because I can have a conversation with the patients about this and they will get it immediately and what I might say is that a patient might come to me and they would come to my service because they had pain that was impairing their quality of life. If they come to me with pain and they are on a very high dose of an opioid medication, I say to them well, it’s not working because they’ve got pain. And I point out that if it’s not working they might be better not taking it.

So there are sort of two health states: you can have a certain amount of pain and be on a lot of medication or you could come off the medication and be in the same amount of pain. And actually, as soon I explain it like that, without exception patients say, ‘when can I start? How can I come off?’ And I think that’s something we all want to do as prescribers. If a patient is on a high dose and it’s not helping – and this doesn’t just apply to opioids, it applies to all the other drugs that patients take to support their pain management – is to try bringing it off and see what happens. And you might bring it off and find the pain’s a lot worse, in which case it has been helping more than you think. But then when your pain doesn’t get worse when you come off, it’s great ‘cause you stay off it and you are freed from all the side effects of that drugs which in themselves can impair your quality of life.

Paul Evans:  Dr Cathy Stannard and we will be hearing from her a little later in this program. I’ll just remind you that whilst we at Pain Concern believe the information and opinions on Airing Pain are accurate and sound, based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.

Dr Rajesh Munglani is a consultant in Pain Medicine in the Cambridge area. He was also a lecturer in the University of Cambridge where he ran a laboratory looking at the mechanisms of chronic pain. So straight to the heart of the matter, what are they?

 Dr Rajesh Munglani: I actually got into my research looking at memory formation and my initial question of that many years ago was, can you remember under anaesthesia. If you’re having an operation, can you form memories and what we showed is that in fact you can in certain situations form memories despite the fact that you are not aware of what is going on. That is called implicit memory formation. Now the interesting thing is that as soon as I started doing the research I realised – and because my other interest was pain – that pain is a memory. And it is the same sort of thing, that if you, for example, have a really nice meal at a hotel and you … the smell of the restaurant you find that to re-experience that rather nice event, say, a few months later all you need is one smell, the smell of the food, and that will re-evoke the whole atmosphere.

In the same way chronic pain is a memory. It’s a circuit that’s been set up and it doesn’t take much to keep it going. You don’t have to have the initial trauma, say it was an accident or an operation. You can have just very light touches that set the whole thing off or a certain movement or a certain unpleasant experience that you experience emotionally, and it will set off the whole pain experience. If you say, ‘does that mean it is not real?’ The answer is ‘no’, it’s actually very real because everything in our brain is related to memory, that’s our identity. I don’t know if you remember seeing Blade Runner, and the guy realises that the robots all have memories. And they don’t know they’re robots because the memories have been implanted and then he has to think about his own and he’s sitting there playing the piano and looking at all the photographs, and it is really quite an important concept that what we are dealing with and what we are trying to disrupt if we need to is that circuit. And there are a lot of different ways of disrupting that circuit.

Paul Evans: So, I could go to a concert and I could experience wonderful a violin symphony and there would be somebody coughing next to me, somebody smelly next to me and I could go home and listen to the CD of that and I might have a completely different experience. Or perhaps whenever I listen to that music again I would have the smelly, noisy experience.

 Dr Rajesh Munglani: Absolutely. It’s been modified and you can modify it and that’s actually a very interesting way that you may have listened to that symphony in the past and you had a really nice attachment to it but then subsequently it is modified. One of the ways of an unpleasant memory being tackled is through the psychological approaches, and what you attach to that memory subsequently. And lots of different techniques are called – and some psychologists will be able to talk about this in a better way than I – but, for example, reframing, and you put different contexts around and different meaning to that memory. And it’s very clever. I mean, it works for some people and doesn’t work at all for others. Other people you have to just modify with drugs, trying to get rid of the circuit, and other people of course…

What I do, I spend my time finding the triggers, like we talked about the smell that evokes the restaurant. There are sometimes in the body little triggers that set off the central pain state and they’re called peripheral triggers and the posh word is peripheral maintenance of central sensitization. Something from the periphery feeds in, keeping the whole thing going. And so what we can do is – as well as working on the central memory and modifying it through, say, psychology, through drugs – you can do something with a peripheral trigger. You can, for example, kill it off, numb it as I do sometimes, Botox it, take away the muscle spasm, and we know that that is not the whole pain but that’s all you need, is to take down the evoking of that memory.

Paul Evans: Lots of people give the example – and you may have given it as well  – that if I stamp on your toe and tell you ‘oh, by the way, somebody has stolen all your money and your bank has gone bust’, you will feel quite a lot of pain. But if I stamp on your toe and I say, ‘oh and you won the lottery too,’ the pain might not be so severe. So the pain isn’t finite; it’s everything else that feeds into it.

 Dr Rajesh Munglani: Absolutely, it’s a very, very important point, the context of suffering is very important. If you have a memory of a pain and it’s associated with, for example, deeds of valour and you came out of it well. I mean, when I treat military guys, this is interesting – the way they stand up to certain pains, because of the context of the pain meant there was meaning to what they did, meaning to the outcome. It doesn’t always work but this is – and it’s not meant to sound condemnatory to anybody else – but if you had that experience like having your leg blown off – I have seen people who, for example, had stepped on mines, had an amputation and still have severe phantom limb pain but they are now riding horses, running event companies. They have got back to normal life.

You see, others who have lost their leg in a road traffic accident [have] deep anger at the drunk driver involved who caused this to happen and the focus for them very much becomes the court case, the anger at the driver being allowed to go off with a relatively little fine, which often happens, and they have got the pain in the leg still. So you have this awful situation of trying to help them move on from that experience and of course that is where reframing that whole experience, trying to get them to come to terms with the pain is part of the healing process and letting them move on – and people do move on.

But sometimes you get stuck, and you can get stuck physically because the pain is just too severe to deal with. Because one of the issues is, if the pain is that severe, your brain cannot move on, the stump is painful. Every time the stump hurts, it triggers a whole phantom limb experience, it triggers the memory of the accident and you can’t get them to move on and they can’t do it for themselves. So this is where lots of interventions – do you numb the end, do you kill off some nerves, do you put in a pump in their back? As well as helping them move on with say, the court case, the medical or legal process, all of that needs to end to help them move on with their lives. Otherwise they are trapped. They are in a prison.

Paul Evans:  Dr Rajesh Munglani, well from the prison of the mind to the physical prison of four walls, locks and keys. We heard Dr Cathy Stannard talking earlier about the issues surrounding the use of opioids. At the same British Pain Society Annual Scientific Meeting, she and Dr Ian Brew launched a National Guidance for prescribing non-medical management of chronic pain in secured environments.

 Dr Cathy Stannard: The new prison guidelines are a project that I have been involved in. I’ve been interested in it, actually for the whole area for about a decade. And what has driven me to want to do something about this is hearing the stories of patients who have got very genuine pain complaints but who are not believed in prisons and have their pain managed poorly. And I think chronic pain is a great vulnerability for somebody in a secure environment. Now one of the problems around all this is that although there lots of strategies – I mean, we do not only use medications in pain management, medications do play a part in pain management – but the nature of the medications that we use make them in essence a tradable commodity within the prison setting where particularly illicit drugs are now much more difficult to get hold of. So I think hitherto people who are working in secure environment have been concerned about the overuse of the medications because of the risk as well that that poses the patient in pain for being bullied or coerced and having their medications being taken away. And I think that this has resulted in people probably under-prescribing.

And I think also that as with many healthcare systems there is not always a good understanding about management of persistent pain. And so I think there is quite a learning curve for people working in secure environments to understand about persistent pain, to understand about the causes, what it is, how to diagnose it, the effect it has on people’s lives. And what the piece of guidance is about – it’s just a simple piece of guidance but a lot of it is about assessment and understanding patients’ pain and understanding the influences on patients’ pain. And having made that assessment we then try to talk about appropriate evidence-based treatment pathways.

And really what’s quite interesting about the project is it’s considered a kind of  risky context in which to provide pain management services but I think it’s focused everybody very much on thinking about quality and about best practice. And largely the sorts of recommendations we make about pain management in secure environments would really very much stand up for pain management in the community.

But I think one thing I would say that’s quite important, because there might be misunderstanding about this, is that some drugs for pain are more popular as a commodity in prison than others. And what we have said in the guidance is if a patient is assessed as having pain, and if a less risky drug is more likely to help, given that not all drugs help, we would always start with the less risky drug. It’s better for the patient, because they will not be bullied or coerced for their medication. And we would be choosing that drug not just on the grounds of its tradability but because we have it as the best bet for managing pain. Now, if that doesn’t work we would then move down the list. The drugs down the list may be less good for managing pain, but are also somewhat more risky in that setting.

So actually it’s turned out in a way I think quite well that the less risky drugs are the more effective drugs. And what we hope is that… we had a lot of contacts from groups who have read this guidance who tell us very sad tales about people who had very poor treatment of pain in prison. But actually I think that what is a good road test is when I plug in all those patients narratives to this piece of guidance, in every case the patient would have had a much better deal if they had been managed according to this guidance.

And I think we have the policy makers behind us and one of the things that I think is very important is that on reception into prison, patients are given a needs assessment in relation to their health, and a lot of that is often around substance abuse and related disorders, psychiatric disorders. But actually now pain is going to be right there within the few minutes of assessment and asking prisoners if they have pain and then assessing that, evaluating it and moving them on down through appropriate pain management pathway. So I think it will take time, but I am very reassured. I have been going around the country to do different groupings of prison health professionals and commissioners of health services. And everyone is terribly enthusiastic to take this up, really keen, soaking it up like a sponge. And I think people really want to change things and make things better. So,  I would really hope  that the sort of bad stories that we hear now will become much fewer and far between as this becomes much more embedded in regular practice.

Paul Evans: One of Dr Cathy Stannard’s collaborators in those National Guidance for prescribing and non-medical management of chronic pain in secure environments was Dr Ian Brew. He is a GP who has been working in prisons since 2001.

 Dr Ian Brew: We have spent the last 10 years mainstreaming prison practise so that prisoners hopefully get primary care equivalent to that that they receive outside, which certainly wasn’t always the case . It’s a challenging environment. There is lots of learning to do along the way but it’s a fascinating environment with a very vulnerable group of patients who really deserve the best healthcare. And there is some evidence that good healthcare can reduce reoffending rates by giving some of the patients some self-esteem which they have long lacked.

Paul Evans: What are the main differences, then, between your community and an outside community?

 Dr Ian Brew: The community is very similar. The biggest difference is that 70% of our patients are drug users or drug dependant, and about 10% are alcoholic, and a very large concentration of mental health problems. It’s sad that up to 90% of the patients in prison have a diagnosable mental health problem. So it’s similar to an outside community, but more concentrated mental health problems, I would say.

Paul Evans: In terms of chronic pain, how does that affect prisoners?

 Dr Ian Brew: Chronic pain is a big problem for a lot of our patients. Their opioid abuse may make them more susceptible to pain and may make them less able to cope with pain when it comes along. Some of the medications that are used in chronic pain are very desirable to drug users because of the other effects that they get whether they’re sedation or euphoria or whether the drugs just make their prescribed opioids more effective. So chronic pain is a problem. But patients complain of chronic pain probably sometimes when they haven’t really got pain. That’s part of their drug seeking behaviour. So it’s a mixture of the two.

Paul Evans: How did you decide who is in the latter group, rather than the real chronic pain user?

 Dr Ian Brew: Yes sure. Patients complain of nerve pain and nerve damage. If a genuine patient has nerve damage, there will be some evidence of a cause for that, whether it’s diabetes, whether it is a neurological problem or whether there is some scarring from burns or surgery or injuries or whatever. Patients who are drug seeking will tend to fabricate their symptoms and they won’t be anatomically logical. So in other words, they might complain of pains affecting areas that aren’t supplied by the nerve that goes through damaged area, if that makes sense. So non-anatomical pain distribution is one thing that would make us think that this is drug seeking and the other is, patients who are genuine are grateful for the suggestions that their clinicians give them. Patients who are drug seeking have one drug in mind. They usually name it and they usually argue if it’s not suggested.

Paul Evans: So if I were a drug abuser then and you offered me like some psychological approach…

 Dr Ian Brew: My experience and that of my colleague is usually that would usually end in an argument, that’s right, yes.

Paul Evans: So let’s concentrate on the people with genuine chronic pain. How do you treat them?

 Dr Ian Brew: I would like to think that we treat them the same as I would treat such a patient outside the prison walls. The changes that we make are not because of the imprisonment. It’s crucial to understand that patients are entitled to equivalent health care, that may not be identical but it’s equivalent to the care that they would receive outside otherwise. So, if somebody came to me with very good evidence of nerve damage causing chronic pain then I would assess them by taking their history and listening to them, which can be helpful in itself. I would examine them looking for evidence to support the diagnosis, and if necessary arrange tests that would help to confirm that. Nerve conduction studies is one example. They can show damage to nerves which will confirm beyond doubt the presence of neuropathic or nerve-related pain. Then I am very happy to treat people as the national guidelines suggest. The NICE guidelines from three or four years ago suggest some drug treatments, they suggest physical treatments, and they suggest some psychological treatments as well. And we would certainly look to go down that route. I think some of the programs that you have done previously look as if they would be very helpful to our patients so I am going to suggest that we give them access to those on CD. Unfortunately most of our patients don’t have access to the internet.

Paul Evans: I am really glad to hear that our programs are useful. But for prisoners there are certain constraints put on them that would make approaches that would, say, be used on me, psychological approaches, virtually impossible – facing things like depression and what my GP would tell me to do, what my pain management people would tell me to do, involve the outside world.

 Dr Ian Brew: Yes, it’s certainly true to say that some aspects of psychological approaches may not be easily available to people in prison, but others will be. Cognitive behavioural therapy is already used for patients who suffer with anxiety and through increasing access to psychological therapies, or IAPT, prisoners are able to access psychological therapies much more than ever they were before. So whilst I take your point that there are some things prisoners won’t be able to do there are a lot of others that they can and they have certainly got very good access to gymnasium facilities and physiotherapy, far better than I have. So overall the holistic approach is going to be useful for prisoners, I think.

Paul Evans: What evidence is there that a healthy, pain-free prisoner will not go back to reoffend?

 Dr Ian Brew: Certainly prisoner patients who come in for the first time or the first few times are very often very low in their self-esteem; they haven’t taken care of themselves. These patients don’t access health care facilities readily outside, maybe because of fear of authority figures, maybe because of chaotic lifestyles, meaning appointments gets missed.

Coming into prison is a real opportunity to take charge of patient’s healthcare. They can take charge of it themselves, take some personal responsibility, and through seeing their health improve in the prison setting, because they are accessing healthcare, they are eating well, hopefully their illegal drug use is considerably reduced, and they are getting support for any mental problems that they have. And also the prisons these days are very good at helping with training, with employment skills, with housing if people are on more than very short sentences. All of this will help to contribute to an increase in self-esteem.

I always say to the young men who come into prison, if you don’t have any self-respect, it’s very difficult to respect other people. And if you don’t respect other people, you won’t respect their stuff. So these guys will perceive nothing wrong with stealing and damaging themselves. By giving them some self-respect, they can develop respectful relationships with other people, and there is good evidence that that helps to reduce reoffending. So clearly sending someone out healthier than he came in, whether it’s in terms of pain, drug use, mental health or all three, that’s got to help in the rehabilitation of the offender and reduce reoffending for that individual.

Paul Evans: Dr Ian Brew. Now before we finish this edition of Airing Pain, I’ll remind you that you can download all editions of Airing Pain from painconcern.org.uk, CD copies are also available direct from Pain Concern. Please do visit the website where you can find all sorts of essential information about pain management, including details of Pain Matters, our magazine that complements and expands on issues covered with Airing Pain. It’s now also available as an enhanced digital download. So please do check it out at the Pain Concern website. Once again, it’s painconcern.org.uk. And finally in talking to Dr Ian Brew about those guidelines for treating prisoners with chronic pain, I was interested to know why a GP who could have opted to work in a much more conventional, and presumably less stressful environment, should have opted for one within the walls of her majesty’s prisons.

 Dr Ian Brew: My Mum and dad often say, ‘What are you doing working in a place like that, why don’t you get a proper job out in the suburbs somewhere?’ And I just think that it’s so rewarding, working with this very vulnerable group. A success for me is not seeing the patient again, which is quite bizarre for a GP. Most GPs go into primary care because of the lifelong relationship, the therapeutic relationship they can build up with people. I enjoy the therapeutic relationship with vulnerable people who can be helped to help themselves, and when I see someone outside the prison who hasn’t been back for a few years, it makes the day worthwhile. It’s really great to see people who are doing well. We do get a bit of skewed view, because of course, the people we see are the ones who aren’t ready to end their offending career. So we can sometimes feel that we’re not doing much good. But as I say, one guy in the supermarket – ‘Hello Dr Brew, how are you doing? I haven’t seen you for years,’ I’ll say, just makes the whole thing worthwhile.


Contributors:

  • Dr Cathy Stannard, Consultant in Pain Medicine at Frenchay Hospital in Bristol and Chair of the Consensus Group/Editor of the British Pain Society’s Guidelines on Opioids for Persistent Pain: Good Practice
  • Dr Rajesh Munglani, Consultant in Pain Medicine in Cambridge and a lecturer in Anaesthesia and Pain Relief at the University of Cambridge
  • Dr Iain Brew, GP working in prisons.

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Delving into the issues surrounding opioids and healthcare within prisons and investigating the relationship between memory and pain

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

Paul Evans talks to Dr Cathy Stannard, a Consultant in Pain Medicine at Frenchay Hospital in Bristol, who outlines the use and misuse of opioids in chronic pain management. She points out that whilst opioids are a useful analgesic for some people, they can have a detrimental effect on others due to their strong side effects. She emphasises the need for healthcare professionals to be aware of how to use opioids effectively as a pain management resource.

Paul also meets Dr Rajesh Munglani, a Consultant in Pain Medicine in Cambridge, who has carried out research into the relationship between pain and memory. He describes chronic pain as a circuit that can be triggered by seemingly small events or memories and highlights the importance of context and memories on pain. He explains that medical or psychological intervention is needed to disrupt the circuit of pain.

Then Paul speaks to Dr Cathy Stannard and Dr Ian Brew, a prison GP, about healthcare within prisons. Stannard reveals some problems in this area, saying that some medicines are a tradable commodity in prisons and that often prisoners’ account of pain are treated with mistrust. She reports that the situation is improving, as the healthcare needs assessment that prisoners receive when they arrive in prison now includes a section on pain, alongside the original sections on substance misuse and psychiatric disorders. Dr Ian Brew emphasises that prisoners deserve to receive equal healthcare to those outside of prison and says evidence suggests that good healthcare, alongside other rehabilitation initiatives in prisons, can reduce the rate of re-offending.

Issues covered in this programme include: Opioids, side effects, educating health professionals, prison, pain memory, psychology, drug overuse, drug misuse, dosage, over-prescription, under-prescription, triggers, sensory memory, associations, amputation, phantom limb pain, neuropathic pain, medical research, psychiatric disorder, mental health, confidence and self-esteem.


Contributors:

  • Dr Cathy Stannard, Consultant in Pain Medicine at Frenchay Hospital in Bristol and chair of consensus group and editor of British Pain Society’s Guidelines on Opioids for Persistent Pain: Good Practice
  • Dr Rajesh Munglani, Consultant in Pain Medicine in Cambridge and a lecturer in the University of Cambridge researching mechanisms of chronic pain
  • Dr Iain Brew, GP working in prisons.

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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