Pain Concern

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

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

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

Contributors:

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

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

To listen to this programme, please click here.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And please do send us your questions via any of the usual routes which you can find at our website which is painconcern.org.uk. But let me just remind you that whilst we believe the information and opinions on Airing Pain are accurate and sound based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Evans: What do you mean by REM sleep?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Contributors:

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

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

Contributors:

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

How do culture and religion affect the way we experience and manage our pain?

To listen to this programme, please click here.

AP13 Culture, epidemiology and back pain Download

Dr Shilpa Patel, Dr Sue Peacock and Sir Michael Bond talk about the relationship between cultural background and pain.

Also in the programme: Dr Steve Gilbert answers questions from people experiencing back pain; Phil Sizer of Pain Association Scotland provides advice on pain management programmes; and we learn about the epidemiology of pain and hear from Generation Scotland about how their study of pain in the Scottish population can help with the identification of risk factors.

Issues covered in this programme include: Back pain, culture, religion, society, socioeconomic research, pain perception, epidemiology, leg pain, hypersensitivity, pain services in developing countries, cancer, HIV/AIDS, language barrier and muscular pain.

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

Dr Steve Gilbert: At its loosest definition, up to half the population actually have chronic pain. At the most severe end, about one in twenty people have chronic pain.

Sir Michael Bond: It’s very interesting to ask people from different religions what pain means to them. All of them linked pain to punishment.

Phil Sizer: Pain management isn’t really ultimately about managing pain, it’s about more about somebody managing their life – so what we are looking at in our programmes is reducing suffering as a way of reducing the impact that pain has on somebody’s life.

Callaway: More on those stories later; but first, remember one of our aims here at Airing Pain is to put questions you’ve raised with us to our panel of experts. Today Dr Steve Gilbert of Queen Margaret Hospital in Fife is dealing with some of your questions about back pain. One Airing Pain listener writes: I’ve had bouts of back pain for several years, which usually clear up. But this time it hasn’t cleared up for four months. My doctor says I don’t need a scan, I just take painkillers. Is the doctor right about the scan? I don’t want to take painkillers forever – what other ways of managing the pain are there?

Gilbert: The main reason for having an MRI scan is to identify something that might be helped with an operation by an orthopaedic or a neurosurgeon. Discs often bulge and don’t necessarily cause any symptoms. They can be pressing on nerves or there can be a narrowing of the whole spinal canal without it causing any symptoms in the patient, so if there is disc bulging which is pressing on a nerve, and that ties in with symptoms you are having which is most often a shooting electric shock pain going all the way down to your foot or a burning or nerve type pain which is there most of the time, not just coming and going, then that can sometimes be helped with neurosurgery.

The answer is, if you have nerve pain all the way into the foot, or if you have other nerve symptoms like weakness or persistent loss of feeling, in that case it might be worthwhile having a scan.

If you have been unwell in yourself, if you have lost weight or you have an infection or you have any past history of cancer, or what we call ‘red flags’ – these are things that the doctor should look out for as there is a chance there is something really serious going on in your back, in that case you would be worthwhile getting a scan.

I must emphasise that the red flags are very, very rare. The majority of people, the problem with back and leg pain is to do with the way the back is working. It is to do with tightening and sensitivity, nothing serious, it’s a normal part of life. Often I see people in the pain clinic and they have been started off on paracetamol and some anti-inflammatories and then they’ve gone on to get some codeine as well perhaps, then they get drugs like tramadol and then moving on to really strong pain killers like morphine and oxycodone, very strong, powerful pain killers.

When I have a look at their back, usually I find that there is quite a lot of tightening and sensitivity from a very light touch and this is because the muscles are tightened up. The nerves are very sensitive. It has to do with the way the muscles and the nervous system interact with the back. It has a lot to do with the way the brain works and it has lots of different connections in this pathway which aren’t easily dealt with by strong painkillers. The best way to get better from this is to try and relax the muscles and to try and gradually increase your fitness and desensitise things.

Callaway: Doctor Steve Gilbert of Queen Margaret Hospital in Fife and he will be answering more of your questions about back pain later on in the programme. I’m Lionel Calloway and you’re listening to Airing Pain. Epidemiology is the study of the distribution or patterns of disease amongst the population in order to identify risk factors, best treatments and preventative measures, so in terms of chronic pain it’s finding out how many of us have it, the types of people we are and any other factors that link us together. One such study is Generation Scotland. Blair Smith, who’s a GP and Professor of Primary Care Medicine at the University of Aberdeen, is a senior member of the Generation Scotland team.

Blair Smith: Generation Scotland is a study taking place across the whole of Scotland, where we’re asking volunteers to come with their families, to come and help us with information about their health, their lifestyle and to give blood from which their DNA and genetics can be extracted. We can look at a number of different important illnesses and chronic pain is one of the ones we are looking at. In common with a lot of chronic conditions, it tends to affect poorer people or people that are less well educated, people from deprived areas, it follows the patterns of most chronic conditions. What we are really trying to struggle with is whether it is cause or effect, is it people who have less money that tend to get chronic pain, or is it having chronic pain, and the disability associated with it, that makes work and income generation more difficult – we don’t know that, and we’re still trying to work it out.

But more recent research following up people who have had chronic pain has found over a course of a ten year period, that people reporting chronic pain at the start of the ten years were more likely to have died during that ten years. In particular, people were more likely to have died of heart disease or respiratory disease. Where there are several very good reasons that you might postulate for the reason for that link, it could be that if you have chronic pain you are disabled and less likely to be able to exercise, or there might be an actual link between chronic pain and stress. We are beginning to look at this in other research, which is actually finding that people with chronic pain have higher cholesterol. There is emerging evidence that it certainly runs in families, whether that is because of genetic effect or because of the lifestyle in the family, or the culture in the family, we don’t know, but there is certainly emerging evidence of some specific genes that might well be associated with chronic pain.

Callaway: That was Professor Blair Smith and you can find out more about Generation Scotland from their website at generationscotland.co.uk. Staying in Scotland, Pain Association Scotland is a charitable organisation working in collaboration with the NHS. It’s pioneered the development and delivery of the self-management training approach to chronic pain in 32 locations throughout Scotland, using intensive pain management programmes. So who are the programmes aimed at? Phil Sizer is the Lead Trainer for Pain Association Scotland.

Sizer: It’s people who are struggling to come to terms with the change in their health, and that’s really key in our work, trying to get people to adapt positively to a change in their lives with the classic things of pacing and stress management. In the intensive programmes, perhaps a little bit more than the group programmes, we tend to get people who come from hospital-based clinics; so it’s kind of interesting that people find it an exit strategy from a chronic pain management service or a back pain service.

The intensive programme is basically what we are doing in one of our regular groups but compressed into eight weeks. So, we start off looking at the impact of pain in somebody’s life and how self-management sits alongside the medical model – it doesn’t replace it – then start to get people to look at the things that have changed in their lives, then get them to look at what they can do about that.

It’s kind of interesting because pain management isn’t really about managing pain – it’s more about somebody managing their life. So what we’re trying to do is looking at ways of taking the total load someone is living under, so the focus isn’t about pain per se, it’s more about pain and suffering. So what we are looking at in our programmes is reducing suffering as a way of reducing the impact pain has on somebody’s life.

Callaway: Phil Sizer of Pain Association Scotland. And you can get more details from their website chronicpaininfo.org. I’m Lionel Callaway and this is Airing Pain brought to you by Pain Concern, the UK charity providing information and support for people who live with pain.

Now we are delighted to announce that two of the most highly respected people in the pain community – Dame Anne Begg MP and Professor Sir Michael Bond – have agreed to be patrons of Pain Concern. Dame Anne Begg has been Labour MP for Aberdeen South since 1997. She’s also a campaigner for social justice, welfare reform and pensions, as well as civil rights for disabled people. Professor Sir Michael Bond was knighted in 1995 for his services to medicine. He is an authority on the psychological aspects of pain and on the social and psychological consequences of severe brain injury. He has served as president of the British Pain Society and the International Association for the Study of Pain, and now lends his expertise to the development of clinical programmes of pain management in developing countries – a journey which started in his early career, when he realised that pain treatment was given according to the cultural influences of the practitioner rather than the needs of the patient.

Bond: I worked as a new doctor in two cancer wards, as they called them in those days, and I conducted a study to find out how efficiently pain was being treated in the men and the women on the two wards. None of the men, in a week, received any of the most powerful narcotic-related drugs, even though they had advanced cancer in many cases; whereas the women did. What we discovered was a lot of the prescriptions were given according to beliefs of the staff about the painfulness of the conditions. There were women being given injections of powerful drugs for certain gynaecological conditions which were believed to be painful but which weren’t necessarily painful. So that was Britain 40 years ago, there were strong cultural influences on how people were treated, and that of course has changed a lot; but you still find similar beliefs in other parts of the world.

It’s very interesting to ask people from different religions what pain means to them. If you think of the Christian religion, most people would say that pain is perhaps a sort of punishment, and in fact the word pain comes from the Greek word for punishment. I spoke to a Hindu and asked him what serious pain would mean to him and he said, well really… it’s a test of your fortitude – if you pass the test you will have a better afterlife. The Buddhist was different; he said, if I have severe pain then something was wrong in my previous life and I now have to atone for that, so all of them linked pain to punishment.

One of the natural consequences of not having specific services for pain relief, other than native medicines and native practices, is that you have to bear it and you’re expected to, and you expect to, because there isn’t an alternative, particularly in the poorer part of the developing countries. In very poor parts of India or south-east Asia, you find people bearing pain that would never be seen in the west. If you think in the deepest parts of many developing countries, the only medical person the community might see is a nurse, and probably one nurse for many, many people and they do everything.

So rather than being evangelical, if you forgive the word, we felt that we should address the problems as they see them, so in other words bottom up. They say ‘What we need is…’ and we say, ‘Well, we can help you get there if we can.’ So our educational programmes are based on submissions from individuals in developing countries, they might be doctors or nurses, seldom any other professional group, and they are as varied as wanting to run a simple course for teaching people about pain. I couldn’t believe this, but in Kenya we were asked to support a course for the training of midwives in pain relief, now it is beyond one’s imagination that training of midwives would not include pain relief, but apparently it didn’t.

We have had quite a lot of requests for programmes for the management of people with severe advanced pain due to cancer but, of course, the other major cause of severe pain, particularly in sub-Saharan Africa is HIV/AIDS. If you think about it, 70 per cent of people who reach the advanced stages, and we’re talking about millions, will not be given any relief for pain, yet the pain they suffer will be as bad as people imagine the worst pain is from cancer.

Calloway: That was patron of Pain Concern, Professor Sir Michael Bond. Whilst his works focuses on pain management in developing countries, the UK’s own multicultural society can also present challenges for health professionals. Dr Shilpa Patel is a researcher and chartered health psychologist working with directly with patients with chronic pain. She conducted research into how general practitioners in the Leicester area manage chronic pain in the south Asian community.

Dr Shilpa Patel: The challenges they face are often around the consultation process, so when patients from the south Asian community, and when I say south-Asian I’m talking about patients from the southern sub-continents, of people who have originated from India, Pakistan, Sri Lanka those kind of countries. And often what GPs said, in the consultation, they found some of the presentation was quite bizarre, it didn’t quite anatomically fit with things they knew, so often people would often present with widespread pain, it was difficult to pinpoint where that pain was coming from, so if you asked them to point out the pain, the pointing would more kind of all over, so you can imagine from a GP’s perspective, it’s like where do you start the treatment.

Also language barriers – if English was your only language and you had patients that were coming in that spoke Gujarati, Urdu, Punjabi, Bengali and often you don’t have a translator available then and there and you’ve got family members coming to translate, they are not always telling you what the patient said, sometimes things are lost in transmission, so that can be quite a barrier.

They also talked about acculturation, now that is kind of looking at when somebody comes to this country how they take on the beliefs and values and perceptions of this country and the beliefs they hold. Now, they said that the older generation that had come over, the way they presented and perceive pain and beliefs about pain are very different from British-born south Asians, because they just said that there is a big generation gap and the British-born south Asians are very much like white British patients. So there wasn’t much difference there, but it was the older generation – they wanted a cure, they wanted treatments, they wanted things to be investigated, they wanted to know what their problem is. So GPs said they could benefit from having better translation services or things like CBT specialists or counsellors, because some of the pain may stem beyond just the pain – there’s other things going on that need investigating – but often they felt they couldn’t do it. So they needed more help in those areas.

Dr Sue Peacock: I think acculturation plays a huge part in how people present with chronic pain and everybody, and every culture, has different health beliefs, different ways that they perceive health and illness and pain. Those things are brought to the consultation whether we like it or not, so I think we need to be aware of how these cultural factors influence, not only people’s pain, but how they present with pain, how their wider communities see pain, their pain behaviour and whether their pain brings them to the pain clinics.

Calloway: Dr Sue Peacock there, she’s a health psychologist at the pain clinic in Milton Keynes Hospital. Her doctorate research was into the effect of culture and ethnicity on the management of chronic pain. Her study was also based in Leicester, where around 26 per cent of the residents say they are Asian. Indian or British Asian Indian.

Peacock: The sample in my study were very acculturated, in that they all spoke English, so most of them could read and write English, 11 out of 13 of them wore westernised clothing outside their family and English was the most common language used at home. What I found in my study, which was quite surprising, was it was so different to my work in Milton Keynes, where they were new immigrant populations, not well-established ones like in Leicester. The Leicester population actually had very similar beliefs to white British people and it was actually gender that created more differences, particularly in terms of things like learned behaviour and learned expectations and where we’ve learned what responses to make to pain and also in terms of our roles in society. Interestingly, all of the people in the study said that women coped better. They showed less pain and coped better than men and everybody said that, and the reasons tend to be summed up by, I think the quote was, ‘Women have babies and women’s troubles, so they can cope with everything’.

What was interesting was the white British participants, as time went on, they had to adapt and they actually coped in very similar ways. The people that I talked to very much felt that men took to their beds to start with, and the women got on because they felt obliged because of their social roles as wives, mothers, carers and all their responsibilities. Quite often it was that fact, that they couldn’t fulfil those roles, which caused them a lot of distress whereas men eventually realised that they couldn’t stay in bed forever and they had to get on because this pain wasn’t going, so eventually they came up with similar coping strategies and new similar coping strategies to the women.

Some of the things GPs said that, maybe the patient was using the pain as a way into the consultation, in the door but behind that it’s actually other things that are going on. They might be feeling a bit low or depressed, but it’s something they can’t say, and the stigma involved in having depression and so forth within the south-Asian community, it can be problematic, so they may not want to go into the GP’s consulting room and say, ‘I feel quite low’ or ‘I feel quite depressed’. They might use pain as ‘a ticket for an admission’, one of my GPs said, it can be like a ticket for admission into the consulting room because pain, you can’t really see it, it can be anywhere, so some of the GPs did talk about whether it was expressing emotional symptoms in physical ways.

Calloway: That was Shilpa Patel you are listening to Airing Pain with me, Lionel Calloway. Before we continue I would just like to remind you that whilst we believe the information and opinions are accurate and sound and 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 is the only one who knows the appropriate action to take on your behalf.

Now we have another question, once again about back pain, for Dr Steve Gilbert from Queen Margaret Hospital in Fife, from a listener who is struggling to because of his or her pain. ‘I’ve started to feel a pulling pain in the lumbar region of my spine. My doctor has prescribed me painkillers and if I feel numbness or difficulty holding urine I should go to the hospital. The pain has now moved to the buttock and thigh, what should I do, should I get an x-ray?’

Gilbert: Well I wouldn’t worry about this; this sounds like a typical muscular pain. Often the problem starts off in the back muscles where they are joined into the back of the pelvis and as you tighten up and try and stop things moving, which is what your brain does for you, not something you are consciously aware of, then the bottom muscles which are attached onto the other side of the pelvis become tightened up as well and this can spread into your thighs. There’s a muscle that goes from the front of your spine down into your groin and often this makes the pain go into the front of your thigh, especially when you’re trying to stand up from sitting, or if you are trying to go upstairs. So this sounds like a normal muscular back pain which is what most people get.

The other part of the question was whether you needed to go for an x-ray and what would happen if you got numbness or difficulty passing urine or bowel movements. This is a condition called Cauda Equina Syndrome, where a disc bulges out and presses against the nerves in the spinal canal. This is a very rare condition but it is something you need to get help for that day – you don’t wait for any appointments with your doctor, you go straight to hospital in that situation, but I must emphasise this a very rare condition. You might feel numbness between your legs and, as we discussed, you might not know when you need to go to the toilet and you might pass urine without realising it. In this case, you need to go for an urgent MRI scan and then go on to see a neurosurgeon perhaps for surgery very quickly but you will know if this happens.

It is a very rare condition, the vast majority of people with back pain have simple, or mechanical, back pain and the main thing to do is to relax and to try and keep on the go, gradually increase your activity and to reduce your painkillers as you’re getting better.

Calloway: Dr Steve Gilbert. The next question is from a 20 year old who says, ‘I’ve been diagnosed with dehydrated discs. I’m currently on a lot of medication and have been for the last two years. I’ve had physiotherapy, epidural injections and acupuncture. I’ve recently had a massive flare up and I’m in so much pain I just don’t know what to do.’

Gilbert: Often, when we are looking at back pain, we tend to focus on the physical structures inside the back, particularly discs. Now, discs naturally dry out a little bit as you get a little bit older but I wouldn’t think there would be any significant changes in your discs at age 20. There might be a little bit of bulging but if the disc is bulging out and that’s causing a problem, it doesn’t usually cause back pain – it causes a nerve pain all the way into your foot, all the way down your leg.

So I think you have been given an explanation about your back pain which is a little bit worrying if you’re only 20 and your discs are already dehydrated and damaged – what’s going to happen when you get older? It’s not a very encouraging message for you. Discs are not usually the cause of back pain. You have had lots of different kinds of medication, injections and your acupuncture, and none of that has made any difference and it’s most likely that everything in your back is very tightened up and very sensitive. That’s to do with the way that your whole nervous system, including your central nervous system or your brain, is working.

So what we have to do to try and get your back pain better is to, first of all, understand what the problem is with your back, why is there so much tightening and sensitivity there. Often there are spasms, because the muscles are contracting without any conscious control and that gives you a lot of pain. You need to try and get things to relax, which is not something you can do consciously, you need to try and increase your exercise tolerance to decrease the sensitivity and this is what we call a rehabilitation approach.

First of all, I think it would be worthwhile finding out more about chronic pain, and why it goes on and on, and why you get so many different opinions about back pain, and I would recommend a really good book about pain and pain mechanisms and pain management called Explain Pain by David Butler and Lorimer Moseley. This a book which explains why pain happens, it’s got a lot about the nervous system and complex clever stuff, so by the end of reading this book you will be an expert on pain. This is something anybody can understand. It’s traditionally been thought that back pain is a serious medical problem, it is clever and complicated – it’s not. It is very straightforward, anyone can understand it, The evidence is that understanding is the key to getting better.

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

If you want more advice with dealing with, or preventing back pain, then an excellent resource is the back care helpline at backcare.org.uk. And finally if you would like to put a question to our panel of experts or just make a comment about the programme, then please do so via our blog, message board, email, Facebook, Twitter or even pen and paper. All this information is on our website at painconcern.org.uk where you can also download all the past editions of Airing Pain.

We will end this edition with some advice from Phil Sizer of Pain Association Scotland for those being diagnosed with chronic pain but are at a loss on what to do next.

Sizer: Well, the first thing is to get the best medical help you can, because I think people won’t engage with self-management until they feel like they have got the right answers from the medical world. Once, they have done that, I think to find your way to some kind of self, or pain management programme would be important. There’s horses for courses really, there are the intensive pain management programmes that only clinicians can send you on. There is the work we provide, which I think is very appropriate, there are also other sorts of self-management but I think the key thing is not to rely on medication because the picture of chronic pain is complicated because of the way people try, or try and fail to adapt, so these are key things being looked at, and self- management offers a way forward with that.

Contributors:

Professor Blair Smith, Generation Scotland
Professor Sir Michael Bond, Pain management in developing countries
Dr Steve Gilbert, Q+As on back pain
Phil Sizer, Pain Association Scotland
Dr Shilpa Patel, Culture and pain
Dr Sue Peacock, Culture, gender and pain.

How culture can affect our experience of pain, a survey of pain in Scotland, pain management programmes and a Q&A session on back pain

How do culture and religion affect the way we experience and manage our pain? Dr Shilpa Patel, Dr Sue Peacock and Sir Michael Bond talk about the relationship between cultural background and pain.

Contributors:

Professor Blair Smith, Generation Scotland
Professor Sir Michael Bond, Pain management in developing countries
Dr Steve Gilbert, Q+As on back pain
Phil Sizer, Pain Association Scotland
Dr Shilpa Patel, Cultures and pain
Dr Sue Peacock, Cultures, gender and pain.

Using cannabis as a painkiller, pelvic pain in men and women, and living with trigeminal neuralgia

To listen to this programme, please click here.

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Paul Evans looks at the often uncomfortable subject of pelvic pain and how both women and men can get help. Dr William Notcutt, expert on medicinal cannabis use, talks about the potential for pain relief, side-effects and future possibilities of the controversial drug. Nicky Jones tells her story of living with trigeminal neuralgia, with Jillie Abbot and Prof Joanna Zakrzewska providing more information.

Issues covered in this programme include: Trigeminal neuralgia, pelvic pain, medicinal cannabis, painkillers, passing urine, enlargement of the prostate, prostate pain, bowel movement, blood in bowel movement, urogenital pain, pain when walking, relationships, sex life, endometriosis, men and women’s pain, multiple sclerosis, orofacial pain, side effects and mental health.

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

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

I’m Paul Evans and in this edition of Airing Pain…

Jillie Abbott: It’s known as the worst pain known to man, sometimes known also as the suicide disease. It’s a dreadful condition to suffer from and we do know of people who have committed suicide.

Dr William Notcutt: Cannabis offers us a different way and we know that the mechanisms whereby cannabis works are different to all the other medicines that we use. Therefore, it gives us potentially an alternative approach, either instead of the drugs they are using or maybe in combination with one or two, that they will get improved relief of pain.

Prof Joanna Zakrzewska: Patients there were wearing little lapels with a picture with a molar tooth and I said: ‘Why are you wearing these?’ ‘Oh, we are what’s called the lost tooth brigade’.

Evans: More on those stories later. But one of our aims on Airing Pain is to find answers to questions you’ve raised with us. One listener asks: ‘My husband is experiencing discomfort in his pelvic region. He’s too embarrassed to go and see his GP, so how can I persuade him to go and see a doctor about it?’ Answering this question is Dr Steve Gilbert who is an anaesthetist and pain doctor working in Fife, Scotland:

Gilbert: In your pelvis there are lots of things that could be causing discomfort or pain and I think that it is very important that your husband goes to see his doctor about this. Often, as you get older, there is some difficulty with passing urine and usually this is just a harmless enlargement of the prostate, which is a little gland that lies at the bottom of the bladder around about the tubes that you pass urine through. So this is fine, something to be expected as you get older. Very occasionally, of course, there is a chance of there being a growth there, something you might need to get checked out with a doctor, with a GP or with a specialist.

Of course also your bowel runs through your pelvis and, as you get older, it’s very important to look out for any change in the way that your bowels are working. If you find it difficult to pass bowel motions and especially if there is any blood in your bowel motions, then you would need to go to see your doctor straight away to exclude any serious disease. So I would say that if this problem has started and he’s carrying on getting symptoms, but it’s not just cleared up by itself, then he should go and see his doctor and see whether there’s an underlying cause for this.

Evans: That was Dr Steve Gilbert.

Natasha Curran: Urogenital pain can affect people in numerous ways because with pain in the pelvic area, people get pain when they are walking, for example, when they are sitting, when they are lying down, so it affects all aspects of movement. But they also get it because the pelvis is very important for several functions: for example, you’ve got to be able to pass urine and faeces and have sex in the pelvis and a lot of people can’t maintain this, so even going to the toilet is very difficult. And also it can be very difficult in relationships, if their sex life is affected.

Evans: Natasha Curran is a consultant in anaesthesia and pain medicine at University College Hospital, London and she specialises in urogenital or pelvic pain medicine.

Curran: There can be numerous causes for people to have a pain in the urogenital – which basically means the renal or genitals system or the pelvis. People can have pain from infections or from previous disease – for example, many women have endometriosis which causes pain in the pelvis – operations or any other reason why people can get chronic pain. So people often have chronic pain from the muscles, which can be really underestimated. And like any other chronic pain, it’s a pain that goes on for more than 3 to 6 months – this makes it what we call chronic pain.

So it’s an ongoing or persistent pain and it’s not that dissimilar to people having conditions like chronic back pain. But I think that most people think, or there is perception in the public perhaps, that if a woman has pelvic pain that’s something to do with childbirth. Or often people have thought that there are psychological causes – but there are really many, many reasons why people can have pelvic pain.

A common presentation for me to see in men is a chronic prostate pain. For example, a man may start off with prostatitis (an infection in the prostate gland) and normally that’s self-limiting, that is, it goes away or it may be treated with antibiotics, which men commonly go to the GP for, have it treated and it disappears. Now, for most men that’s the story – as in, for most men – or women having a bladder infection (cystitis) – but unfortunately for a small number of people they may get a recurrence of the symptoms, so they experience the symptoms as if they are having prostate infection, although they haven’t got an infection, they’ve got a chronic pain syndrome.

Often I see people who are very happy to talk about their pain and say ‘Oh, I’ve talked to everyone about this. I have no embarrassment whatsoever’. But I recognise that pain in the vagina or the testicles or the penis or the back passage is not something that people are able to necessarily talk about with their family or friends, whereas if they had back pain, for example, they might be more willing to share that. That sharing of information is only really done with medical professionals and it might be something that they’re reticent to bring to their general practitioner or even their urologist or gynaecologist, particularly if people don’t ask about it.

So one of the things I do in my consultations is to very much… so at the beginning of the consultation, there will be some questions I ask you which may not be relevant, but I know that if I don’t ask you, sometimes there may be things it can be difficult to tell me about. So I ask people about their sexual relationships, because sometimes it might be something that is very important to someone, like, ‘I’ve got this pain in my vagina or my penis which is preventing me from having sex with my partner’. But if someone is not able to say that, that’s why I ask them questions.

I think if someone is listening to this and they realise they’ve got urogenital pain and it’s been chronic, as in it’s been there for longer than 3 or 6 months, I would suggest going to your general practitioner and you can be referred to a pain clinic. There are certain pain clinics which have specialists in urogenital pain like us at University College London, but also there are people around the country that are becoming more proficient and learning more and more about treating pain in this part of body.

Evans: Natasha Curran of University College Hospital in London. And you may be interested to know that the Bronllys Pain and Fatigue Management Centre in Wales that we’ve featured in an earlier edition of Airing Pain is running a two-week residential programme for female chronic pelvic pain and endometriosis in June 2011, that’s this year.

You are listening to Airing Pain with me, Paul Evans…

Now cannabis, it’s use and misuse is a subject guaranteed to raise tabloid temperature, particularly when questions of its legality are raised. Cases that hit the headlines sometimes involve people witch chronic pain being prosecuted for their use of what is essentially an illegal street drug.

Dr William Notcutt is a consultant anaesthetist at the James Paget Hospital in Great Yarmouth. He specialises in pain medicine and has been researching the use of cannabis-like medicines for about 15 years. Initially this was on synthetic cannabinoids, but in 2000 the research was able to start using extract of the actual cannabis plant.

Notcutt: We know an awful lot about how it works, why it works, why it helps in multiple sclerosis and as time has gone by, we’ve managed to find out and show the benefits that these cannabis extracts can have, particularly with multiple sclerosis and also with other pain problems as well. For a drug that has been around 5000 years – there are writings of it in ancient Chinese literature – it is always difficult to use because people did not have a standardised purified extract and they didn’t know how to use it properly, but getting a licence for cannabis as a medicine is a massive leap forward.

Evans: So the drug Sativex became licensed for use in the UK in June 2010, but what pain conditions will it be used to treat? And whilst some people may be aware of the effects of taking illegal street cannabis, is this what medicinal users can expect and in what form will it be taken?

Notcutt: The initial condition that the licence is going to be for is for the treatment of spasticity in multiple sclerosis. Spasticity is a condition whereby the muscles go into spasms, are very tight, and that, as one can imagine if you’ve ever had a cramp, can be an excruciatingly painful condition. Now, this is the first area that this has been looked at, but we also know that it’s valuable in other causes of pain with multiple sclerosis, and I think in time the license will be developed so that it can be used in other pain problems.

Inevitably with any drug there are side effects and every single drug that we use at the moment for treating pain has side effects, some of which can be lethal. Cannabis itself does have side effects and in the controlled way we’ve be using it with patients these side effects can be minimised. And the likely side effect that patients can get is feeling a little light headed or dizzy. It’s certainly not the euphoria that people usually associate with the recreational use of cannabis. They don’t go anywhere near that level of intake. And what we’ve found is that at comparatively low doses of cannabis, that patients can get the therapeutic benefit. They get it at low level, far below the level at which they would be expected to be high, as they would do if they were using it recreationally.

The traditional way of using cannabis has been to smoke it, which is an effective way of delivering the drug, but it is very likely that in taking it, it gets into your body very quickly and can produce the high. The other way that cannabis is traditionally used is by eating it. It’s often baked into cakes or other food. The problem with that is that the absorption is much slower and much less reliable and so it’s much more difficult for a patient to get the dose exactly right. What has emerged from our research has been the use of the cannabis extract sprayed under the tongue. It’s then absorbed by the lining of the mouth and this gives a much more precise effect than if it were swallowed.

Evans: As I alluded to earlier, the licensing of what was – and is – an illegal street recreational drug will always create a headline. Dr William Notcutt again:

Notcutt: I think for a long time there is going to be a controversy over cannabis. Maybe there always will be, because although it does help a lot of patients, it doesn’t help some patients at all and there are problems with cannabis and we know this.

There’s been a lot of press about the potential for psychosis with cannabis users. As time goes by we’ve understood more about that and it’s probably a problem essentially in the very young, particularly the adolescent users of cannabis and the response of the adolescent brain to cannabis. Older people, who comprise almost all our patients, if they haven’t had any significant psychiatric problems or even drug dependency problems, are very unlikely to develop any psychosis or dependency problems with cannabis. It’s probably mainly a problem with the very young and the recreational user who uses high doses.

But there are several dangers for people who buy it of the street, one of which is the quality of the material they are getting. They really don’t know exactly how effective it is going to be, they don’t know what the composition is. Cannabis itself has a number of different elements to it and what we know, for example, is that the two particular elements when put together make it much safer than a lot of the cannabis that’s on the street at the moment – so-called ‘skunk’ and that type of cannabis.

So if someone is getting it on the street, they essentially don’t know the quality or quantity, they don’t know what it’s mixed with and it may be mixed with pesticides, heavy metals, fungi, bird droppings, all sorts of chemicals – you just don’t know what it is there. Then they have the problem of administering it: how do they do it, how do they go about it? And then knowing how far to go, what the experience might be… it’s just a massive problem and it’s the same thing with drugs like heroin and other drugs you can get off the street: you just don’t know what you are getting and you may be alright one day and another day you may be in real problems.

I mean, I would like to see medicinal cannabis become another tool that we have for treating pain. In my mind, there’s no doubt that this is going to prove a valuable addition to the drugs that we have at the moment, but there is a huge amount of work to be done on it. We’ve been working on morphine for 200 years and still studying it to this day. Well, I might say there’s 200 years of work to do on cannabis, makes me shudder at the thought [laughs]. But there is a lot of work to go on to this, to develop it, to potentially develop it out not only into areas of pain, but possibly into many other areas of medical practice as well.

Evans: Dr William Notcutt. And at this point I will just remind you of our usual words of caution that whilst we believe the information and opinions on Airing Pain are accurate and sound, based on the best judgements available, you should always consult your health professional on any matter related 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.

This is Airing Pain with me, Paul Evans.

Nicky Jones: It’s like being hit by a bolt of lightning or I would imagine that it’s like having a Taser gun aimed at your face. It just knocks you off your feet when it happens, there’s nothing you can do, you can’t function, you can’t speak, you can’t think.

Evans: Trigeminal neuralgia is a relatively rare condition that affects 4 or 5 people out of every 100,000 each year in the UK, yet to those unfortunate enough to have it, it can be devastating. Prof Joanna Zakrzewska is the Facial Pain leader at University College London Hospital’s NHS Foundation Trust and she works at the Eastman Dental Hospital:

Zakrzewska: It’s a facial pain on one side of the face which results in sharp shooting pains that last for seconds but are of great severity. And then you may get many of these provoked particularly by light touch activities such as washing your face, shaving, brushing your teeth, eating. And it really stops you dead in your tracks. You can get multiple attacks every day and then suddenly it could disappear for weeks or months, but gradually it tends to keep recurring and the attacks get longer and the pain gets more severe with time.

Jillie Abbott: When it first happens it’s a bolt out of the blue and you recover from it quite quickly but the shock is astronomical, it really is very frightening. And what tends to happen, it’s a progressive condition unfortunately and these attacks become more regular and can happen in a volley of attacks. So you can get this sort of zap-zap-zap sensation in your face, which just renders you incapable of doing anything and the fear of the next attack is what most our members say is one of the worst things. It’s like torture and you know you are going to be tortured again.

Evans: That was Jillie Abbott, Chairman of the Trigeminal Neuralgia Association UK. Nicky Jones now, in her late thirties has had the condition for eight years:

Jones: It started out of the blue. I was sitting watching television, it was as if somebody put a cattle prod to the side of my head, just WHACK! – this immense electrical, intensely painful pain. And I literally hit the floor. WHACK! And it’s never stopped.

Zakrzewska: Patients very often think, when they get their first attack of pain, that it’s a dental condition because it tends to be in the lower part of face. So the general perception is ‘If it hurts around my face’ – because it can start to hurt inside the mouth – the general idea is: ‘Oh, it must be a toothache’. Patients will go to their dentist and the dentist, of course, being very mechanically trained, will look for a dental cause, may find a tooth that looks a bit suspicious and start some dental treatment. Neurosurgeons claim that up to 60 per cent of patients will have had some dental treatment done before the penny drops. And some of these patients will have even their teeth taken out or root canal treatment.

And I must say, when I went to the first trigeminal neuralgia support group meeting in the US, patients there were wearing little lapels with a picture of a molar tooth and I said ‘Why are you wearing these?’ ‘Oh, we’re what are called the lost tooth brigade’.

The problem with trying to make the diagnosis is that the diagnosis relies on history alone, there’s no easy test like for diabetes where you can do a blood test and show, ‘Oh this is a blood glucose’. So it’s a matter of sitting down very carefully and piecing out the timing of the pain, the character of the pain and listening to the words patients use, because they will often use the words ‘It’s like an electric shock, lightning going through my face’, which also gives that feeling of rapidity and severity of the pain. And the fact that this is a sharp pain rather than a dull achy pain, which is what a lot of toothaches are like.

Evans: You are listening to Airing Pain with me, Paul Evans and we are talking about Trigeminal Neuralgia. Prof Joanna Zakrzewska of the Eastman Dental Hospital:

Zakrzewska: Trigeminal neuralgia, in the majority of cases, is thought to be caused by pressure of a vessel on the nerve, right inside the brain. Just as the nerve enters the brain, there is a weak point where the myelin changes. Pressure of a big vessel on there causes the myelin – that is the insulation of nerves – to disappear, so that suddenly you can get crosstalk between light touch fibres and pain fibres – because normally they are insulated from each other, like a wire is insulated from itself. And in some rare cases it can be due to multiple sclerosis or it can be due to a tumour sitting in that part of the nerve or on that nerve. So that’s why these patients need to have some scans like an MRI scan to exclude those much rarer causes – but in the majority of cases it’s just this vessel.

Evans: So? Can it be treated? Jillie Abbott of the Trigeminal Neuralgia Association UK:

Abbott: TN is treated primarily with antiepileptic or anticonvulsant drugs. It is a forever treatment and antiepileptic or anticonvulsant drugs are not something you can take as and when you get the pain – you have to take them regularly for the dosage to built up in your blood stream. And we do get situations where the side effects become intolerable and patients find that they just can’t cope on the level of drugs that they are having to take to try and control the pain.

Jones: Carbamazepine completely knocked me for six. I couldn’t function at all, I couldn’t walk, anything like that. Didn’t know any better, so I didn’t persevere with it. He then put me on gabapentin, which seemed to slow the pain down and I struggled with it. I was on stupidly high doses and I couldn’t work, I couldn’t feel my fingers or my toes and I stuttered a lot and couldn’t find any words, you know, it really had an impact on my mental capabilities as well as my physical.

Zakrzewska: Virtually all of these drugs will give severe side effects and then we move on to surgical treatments. In a way, the best surgical treatment is to address the cause, that is, the nerve being compressed by a vessel. But this is a major procedure called a microvascular decompression and not everybody will want to have a major surgical procedure that has a mortality rate associated with it – which is fairly low, as low as for any operation, but is always there – given that is not a disease that results in death. But this will give the best results: 70 per cent of patients can expect to be pain free up to 10 years. That’s as long as the data we have.

If patients aren’t fit enough for this, then we have to think about destroying the nerve, slightly lower down in the passageway of the nerve and this is by, very crudely put, by cooking it, putting glycerol around it, a neurotoxic drug or even by compressing it. But all of these result in destruction of the nerve and therefore patients are likely to have a sensory loss, like a dental injection. And it can vary anything from the real, full deadness that you get with a dental injection, to the one coming through with light touch or pins and needles type feeling and about 60% of patients will complain that that’s an unpleasant sensation. That gives pain relief on average for about 4 years and then it needs repeating again.

So you’ve got to toss up your different decisions for which procedure to have, which can be very difficult for patients to make, about whether they go for medical or surgical treatment, and then if they go for the surgical treatment, which of the surgical treatments to choose – and that’s very difficult.

Jones: At that point I went on the internet and I found the Trigeminal Neuralgia Association. I rang their helpline and got a lot of information that I hadn’t got from anywhere else, a lot of emotional support and they gave me a consultant surgeon’s name. So I went to see him and he looked at my bad MRIs and said ‘You’ve got a massive compression on your nerve route, a blood vessel is compressing the nerve as it comes out of the brain stem’. So he said he would operate. Massive artery pressing on my nerve route, so he patted it all up and I woke up and I was pretty much pain-free and it was great and I came back home to recover postoperatively and the pain still seemed to have gone. I returned to work and was made redundant, so I then immediately just went to another job, but I’d only been there for about 3 weeks and the pain suddenly came back.

Zakrzewska: The nerve tries to regenerate and reform the myelin and this is why you get periods of pain remission, because the body is successful in re-coating these nerve fibres, but if that fails, then the pain continues.

Jones: The pain gets so bad the constant pain, and, you see, when the constant pain is bad the stabbing pain joins the party. It can get intolerable. Mr Simpson, my consultant, says I should go to a hospital and get Ketamine at this point, but I can’t even move, there is no way I can drive or be driven half an hour to the nearest hospital who would then spend three hours trying to figure out what to do! So I dose myself up with my opioids that I have here and try and just go through it. The longest one of those bad things lasted was just over 24 hours, usually after 8 hours or so it does lessen enough that I can start to sleep.

Evans: And do you know what triggers that with you?

Jones: A major trigger is activity and that means doing anything other than going for a very short walk in the morning and sitting in my chair all day. I mean I get instant pain. If I touch one of the trigger points on my face I will get instant pain, WHACK! But if I do that too much, the next day it’s like the nerve just has a complete breakdown, just has a party, a very bad party.

Abbott: It’s known as the worst pain know to man, sometimes known also as ‘the suicide disease’. And because of this terror of going outside, of talking, eating, laughing, smiling, you become very isolated, you become very low, very depressed. Several patients become very, very emaciated because they find they can’t eat, some can’t even drink and they end up being taken to the hospital because they are dehydrated. It’s a dreadful condition to suffer from and we do know of people who have committed suicide.

Evans: Jillie Abbott, chairwoman of the Trigeminal Neuralgia Association UK:

Abbott: The most important thing I would advise anybody with this condition is to join the Association and the support that they get will be invaluable. There is information on the internet – a lot of which is incorrect – but all the information that we give out is checked by our professionals, by our medical advisory board and by our medical advisor, Professor Joanna Zakrzewska, so it is correct – so they are getting up to date, correct information as well as health and guidance.

Jones: Oh, the TNA was an absolute lifesaver to me, I don’t know what I would have done without it. I mean, to me it was the intense relief of finding somebody who had the condition, who could understand, made a massive difference – it made THE difference. And that’s why I volunteer on helpline, that’s why I do what I can even when it hurts like hell to do it, because there are other people out there hurting as well. And other people who need to know that they are not alone and that other people understand.

Evans: What sort of people get in touch with you?

Jones: It’s a massive range of people. We get carers who are worried about their relatives and think that the relatives haven’t got enough information or aren’t being treated properly or just want information. We get sufferers who are suicidal, who’ve had enough of this and can’t go on and they’re just crying out for help. We get people who just need information about possible treatment options. I’ve even had somebody emailing and asking for help for a horse who had the condition, which was interesting.

There is a theme through them, in my opinion, that GPs don’t treat this well, that they don’t know enough about the situation. If they recognise it, they will stick the patient on carbamazepine and if that doesn’t work, they are at a loss. I’d prefer to see people who aren’t treated easily by carbamazepine being sent straight to see a neurologist, not to let these people continue suffering, because that seems to happen a lot and people get desperate and that’s why the TNA is there. That’s our important role, is to stop people feeling so desperate and allow them to get the information they need.

Evans: My thanks to Nicky Jones who went through an awful lot to pass on her message about the Trigeminal Neuralgia Association UK to others with the condition. Their website is www.TNA.org.uk. That’s T N A – stands for Trigeminal Neuralgia Association – dot org dot UK. Please do pay it a visit.

Now, before we finish I’d just like to say that if you or someone you know has benefited from listening to these programmes and want them to continue, then please consider making a donation to secure Airing Pain’s future. It’s very easy to do, just go to our website at www.painconcern.org.uk where you’ll find a ‘Make donation’ button. You can also download all the past editions from there and if you would like to put a question to our panel of experts or just to make a comment about the programme, then please do so via our blog, message board, email, Facebook or Twitter or even pen and paper, in which case you will need the address:

I will leave you with Nicky Jones:

Evans: I’ve come to your home today. You are wrapped up, sitting down in your chair, staring out the window basically, you are sucking your lollipop – what’s the lollipop?

Jones: It’s fentanyl, a strong opioid.

Evans: So, you are having to do that to talk to me?

Jones: Yes.

Evans: How is you talking to me going to affect you tomorrow?

Jones: Just the action of talking triggers the pain, it’s the nerve endings in my mouth, the roof of my mouth and my tongue. It’s like they get used and the nerve just misinterprets those signals as intense pain.

Evans: And since we’ve been talking we’ve had to stop twice.

Jones: It’s pretty bad at the moment and it’s triggering off in my mouth and the roof of my mouth.

Evans: Right. I think we ought to stop. Thanks very much indeed.

Jones: Thank you.

Contributors:

Dr Steve Gilbert, Q+As on back pain, pelvic pain in men
Dr Natasha Curran, pelvic pain
Dr William Notcutt, cannabis and pain
Prof Joanna Zakrzewska, facial pain/trigeminal neuralgia
Jillie Abbott, trigeminal neuralgia
Nicky Jones, living with trigeminal neuralgia.

Using cannabis as a painkiller, pelvic pain in men and women and living with trigeminal neuralgia

Contributors:

Dr Steve Gilbert, Q+As on back pain, pelvic pain in men
Dr Natasha Curran, pelvic pain
Dr William Notcutt, cannabis and pain
Joanna Zakrzewska, facial pain/trigeminal neuralgia
Jillie Abbot, trigeminal neuralgia
Nicky Jones, living with trigeminal neuralgia.

Paul Evans learns to knit, and, how music can be used for pain relief

To listen to this programme, please click here.

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Paul Evans gets a knitting lesson when he visits the Stitchlinks group in Bath, where people use craft activities to manage their pain. Betsan Corkhill and Dr Mike Osborn talk about the medical science behind it, while the knitting group talk about their own experiences. We also meet Dr Laura Mitchell who subjects volunteers to pain tolerance testing to see how music can help relieve feelings of pain.

Issues covered in this programme include: Music, knitting, mindfulness, arts and crafts, pain perception, social contact, group programme, meditative state, PTSD, psychology research, alternative therapy, confidence and relaxation.

Paul Evans: Hello and welcome to Airing Pain, a programme brought to you by Pain Concern. I’m Paul Evans.

Dr. Laura Mitchell: What we’ve been doing for the last ten years now is using experimentally-induced pain in the lab, circulating very, very cold water in a water bath; they put their hands past the wrist level – you know, there’s a real concentration of nerves in our wrist area that kind of make this the kind of nastiest bit, that make it quite painful.

Evans: Students volunteering to be in pain! Surely it couldn’t get worse, could it?

Mitchell: All participants in the study listened to Billy Connolly. And although that also had an effect on their pain perception, we haven’t found anything else that has been so effective as…

Evans: Effective as what? Keep listening, you’ll find out later.

Woman: I used to be sat indoors, I’d been in me wheelchair for 30 years; I used to sit indoors all day long on my own, when my husband was at work, looking at the four walls, and in the end it was staying in bed all day.

Evans: In today’s edition of Airing Pain, we’re looking at two arts and crafts whose therapeutic qualities may have been recognised by their practitioners for centuries, even millennia, yet which have only come under scientific scrutiny over the last decades.

Knitting has been around for nearly a thousand years. Soldiers in the First World War suffering from what was then known as shellshock, now post-traumatic stress disorder, were sometimes given knitting by way of therapy. I spent an afternoon in Bath’s Royal United Hospital pain clinic, where the Stitchlinks group were meeting. Stitchlinks is an online support network for people who enjoy using crafts therapeutically, and the brains, and energy, behind it is Betsan Corkhill.

Betsan Corkhill: Up until six years ago, I was a senior physiotherapist specialising in neurological conditions and care of the elderly. I then went to work in the community with lots of different age groups, and the patients I encountered there – a lot of them are very demotivated. They were literally sitting behind four walls, not seeing anybody from day to day. And my role as a community physiotherapist was an assessment role, so there was no time to actually give those patients what they actually needed, because I was expected to leave them a list of exercises to do to get them all mobile and yet I could tell you with 100 per cent certainty that they wouldn’t do the exercises I left them. And I felt that they needed to go back a step further, and we actually needed to get them interested in the world again, and give them an outside interest get them social contact, before they would then develop an interest in doing exercise and self-managing their conditions.

So, actually, I left physiotherapy because I got so frustrated at not being able to do this and, to cut a very long story short, I ended up having a complete change of career and becoming a freelance production editor with a range of magazines. And I ended up working on a craft portfolio, and my task was to read all the letters that came in – and there were literally sackfuls every day – for the knitting and cross-stitching magazines, and about 99 per cent of these letters were stories from people who had long-term illness who were managing these illnesses with knitting and cross-stitching. And immediately my medical head went back on and I thought ‘Ooh, this would be a very interesting way, a very easy way and cheap way of actually getting these people that I saw in their homes motivated again’, because these stories were telling of how they become motivated, how they were looking forward to the next project, how they were looking forward to the next day, how they didn’t have to take their pain medication when they knitted.

And four years ago I approached the pain unit here to ask if they’d be interested in setting up a group, to see if it worked. And that group’s been very successful – I get referred individual patients for knitting therapy and those patients who knit at home, on their own, are showing just as much improvement as the patients who come to the group. So, although the group is very important for the social contact, the knitting itself is working in some way.

[Laughter]

Speaker 1: ‘I’m knitting a blanket for the seals. [laughter] Weren’t we told that, don’t you remember?’

Speaker 2: The seals?

Speaker 1: Betsan! Said she wants some…

Ann: ‘Oh, yes, yes, she wants a jacket, yes, yes.’

Speaker 1: Oh, thank you, Ann – a jacket? I thought she wanted a blanket.

Ann: It might have been blankets, I don’t know. We’ll have to stitch it up.

Speaker 1: And I crocheted…

Speaker 3: Oh my word, she’s gone fancy.

Speaker 1: Oh well, it’s a funny shape.

Corkhill: It appears to be a model craft, in that we think movement of hands is very important in some way because the hands have a large representation in the brain; there’s alternate co-ordinate movements of the hands and the movements are rhythmic in nature and knitters will fall into their own personal rhythm and that induces a form of meditation, a meditative-like state. Meditation is being taught and recommended for patients with long-term health problems, but it’s fantastically difficult to teach somebody who is in pain or is depressed how to meditate. And the clinicians will tell you that it’s almost impossible, in many cases, to do this and particularly with the elderly. What we’ve been doing is giving people a knitting kit and showing them how to knit and it seems to be a natural side effect of knitting.

[Laughter]

Speaker 4: The seal would be pleased to see that, wouldn’t it?

Speaker 1: Look! Look, girls! The seals won’t mind, will they? No, the seals won’t mind.

Kim: It’s not bad crochet, either.

Speaker 1: Oh thank you Kim! …Oh! Coming from you, that’s very good.

Speaker 5: So, they’re for the seals.

Speaker 6: A floppy seal and a wet seal.

[Indistinct conversation]

Speaker 7: I didn’t know they needed blankets.

Speaker 8: They want them in the… seal sanctuary.

Speaker 1: I think so.

Evans: Going back to this meditative state. Watching my wife knitting every single night and the clackety-clack of the needles – how can that be meditative? An enormous amount of concentration, from my mind, seems to go into it.

Corkhill: What they describe is that their hands are occupied in an automatic movement, and they describe a feeling of their mind being totally freed up to sort out their thoughts, to think through problems; some people say that they can think through very dark problems that they were unable to think through without knitting – so it’s very similar to mindful meditation in that way, in that you can think through problems in that moment without becoming stressed by them.

There are lots of other little things, too, all the psychological issues of suddenly becoming the master of a skill and a lot of these patients will say ‘This is the first thing I’ve been successful at for years, this is the first constructive thing I’ve done for years.’ They find something that they are successful at which can be done from their armchair and that encourages them then to try other things. So it seems to be turning around this sort of juggernaut of backward thinking thought cycles and giving them something positive to focus on.

It’s almost certainly, I would say, stimulating the reward system of the brain: if you expend an effort to carry out a task you’re rewarded with a flush of chemicals, notably dopamine, which has pain-relieving properties and is a feel-good chemical. And our patients do things like knit for charity, knit for the special care baby units, so that in turn helps them to feel good about themselves and it changes their perspective on life: all of a sudden, they are helping people in need, they are not the people in need anymore, they‘re helping others more in need than they are.

Speaker 9: I like knitting toys; they’ve got me knitting toys.

Evans: So what are you knitting now?

Speaker 9: So now I’m going to be knitting this pig, although it’s in double-knit, but I like shrinking them down so they’re tiny, so that’s going to be a four ply, for smaller needles and then they make little tiny things instead of great big things. And I crochet.

Evans: There seems to be an animal theme about this group.

[Laughter, indistinguishable]

Corkhill: It also seems to have an effect on post-traumatic stress disorder. We have had patients whose post-traumatic stress symptoms have improved dramatically. There is research done at Oxford University which has shown that performing a visuospatial movement can actually stop flashbacks from post-traumatic stress, so it actually – and that paper does actually suggest that activities like knitting and worry beads are looked at further.

Evans: What do you mean by visuospatial movement?

Corkhill: It’s movement really in a 3D in front of you, really, so it’s, it’s… a bit difficult to describe without showing you!

Evans: Show me later.

Corkhill: Yes. [Laughter]

Evans: You’re listening to Airing Pain, presented this week by me, Paul Evans. And please bear in mind that, whilst we believe the information and opinions on Airing Pain are accurate based on the best judgments available, you should always consult your health professionals on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances, and therefore the appropriate action to take on your behalf.

Today I’ve joined the Stitchlinks group at Bath’s Royal United Hospital. Mike Osborn’s a psychologist in the pain clinic.

Mike Osborn: All our patients have to live with a very long-term and unpleasant condition which is not particularly well understood. It’s fair enough to say it really changes your life, and managing it is very difficult and for some people you can end up very flat. What the Stitchlinks group can do is help people to start to get back into doing something. The pain’s still there, the pain’s always there, but to be able to do things despite the pain, to be able to sort of start to feel a little bit more active and then to, you know, retrieve a little bit of pride, really, a little bit of dignity, which pain sort of sucks out of you, or tries its best to.

Evans: One of the noticeable things walking into a group like that is – there is no evidence of pain, hangdog expressions…

Osborn: No, no. Occasionally, you know, people flinch and stuff but I mean, the public, perhaps, reputation of pain patients is being kind of quite weak people, constantly in agony – is nonsense really. You can’t tell from the outside what a pain patient feels inside, and they are very, very good, on the whole, at keeping it to themselves. And the reality is that despite their public reputation, they have an extremely high pain tolerance – they just have to live with a lot of pain in order to do that. You don’t know what pain people are feeling.

Evans: But is that one of the benefits of a group system as well, they don’t feel they have to hide anything?

Osborn: It’s probably the dominant benefit, if we’re honest, it’s – they’re in a setting, in a place where everybody understands, it’s all unspoken. They don’t have to wear as heavy a mask as they would normally, you know, because everybody understands. And if one of them gets up and lies on the floor because that’s what they have to do, then nobody blinks an eye. I think being in the company of people that accept and understand is, for most pain patients, blessed relief really. They spend an awful lot of time worrying what other people think, and as a result can, even in a crowded room, feel quite isolated. And this gives them a chance to not be like that, and then once you get that opportunity you can sort of – move on from there, start doing things, getting into things. Feeling a bit like your old self.

Pauline: …she’s a bit special.

Speaker 4: She’s special? [Laughter] She drinks a lot, that’s why. [Indistinguishable]

Pauline: …she doesn’t come sometimes ‘cause she’s a bit wobbly. [Laughter]

Speaker 2: Pauline!

Speaker 3: That’s a pack of lies. [Laughter]

Speaker 2: Destroying the woman’s good name.

[Laughter and chat]

Corkhill: Knitting is a great leveller and what’s interesting in knitting groups, you have people from all different backgrounds, ethnic backgrounds as well, who sit and have something in common. You can have a person with learning disabilities sitting next to a university professor, and they’ll have something in common, something to talk to, and firm friends are made in knitting groups.

Last week I was asked to run a group in Birmingham, of Somali women, as part of the pain management programme. And the difficulty with this – ethnic minority women who come into the country – is that they don’t have contact with the outside world, they’re very isolated, they don’t speak the language. So the hope was that actually getting them involved in a knitting group might encourage them to socialise and communicate with the health care professionals.

Evans: You’re going to teach me how to get into this meditative state now. I haven’t done this in 47 years, when my grandmother taught me.

Corkhill: Well, you might very well remember, so let’s have a go. What I’ve done is I’ve cast on for you. Okay, because the aim of this is to get into the flow of movement, okay, so don’t worry about any mistakes you make or anything like that. So I’ll show you first.

Evans: Cast on is where you put the first row of stitches…

Corkhill: That’s right, yes, okay? We can learn how to do that when you’ve got into the flow of movements. Right, so you put your needle into the first stitch, front to back, just get a tension, it doesn’t matter how you hold this yarn, okay, you just get a bit of tension with the yarn. You wind it round the needle, pull the stitch through, and the old stitch off, okay? So you’re, what you’re doing is making a new stitch on this right hand needle, okay? So you say to yourself ‘round, pull the new stitch through, and off’.

Evans: So, you’ve done two stitches for me, so I put my right hand, I catch it through there…

Corkhill: Front to back [ahhh] front to back, like that.

Evans: This is the cardigan way of knitting then. [Laughter]

Corkhill: Round, yep, pull that stitch through…

Evans: Catch it underneath…

Corkhill: Catch it underneath, and off.

Evans: And off.

Corkhill: Okay, that’s it, your first stitch.

Evans: And already I’m smiling. [Laughter] A smile is worth a thousand pills. I don’t want to bore you while I get to grips with my second stitch, so in the meantime we’re going to leave Stitchlinks and look at how another of my great passions could be having a greater benefit that even I imagined.

Now I’ve been a music lover all my life, and I’ve always been drawn to music that reflects and reinforces whatever mood I’m in. Now that’s not unusual, nearly all of us interact with music one way or the other, whether we realise it or not. Doctor Laura Mitchell, of Glasgow Caledonian University, is an experimental psychologist, whose background is in music psychology. In broad terms, that’s looking at the way we engage with music, what it does to us physically and how it makes us feel.

But does music have a value in the field of pain management?

Dr. Laura Mitchell: People are engaging with all types of music, far more than they ever were before, obviously because our technology is moved on so much in, like, quite a short space of time. They have very specific types that they like themselves, and they have a great relationship with their own favourite music. So one of my colleagues at Strathclyde University calls this the ‘Darling they’re playing our tune’ effect. That, you know, the music you had at your wedding, or at your eighteenth birthday, or any significant event in your life, continues to have a huge emotional connection with you, that when you listen to it you might be brought back right to that moment again and remember how you felt, and feel the same way.

What we’ve been doing for the last ten years now is using experimentally-induced pain in the lab, circulating very, very cold water in a water bath; they put their hands past the wrist level – you know, there’s a real concentration of nerves in our wrist area that kind of make this the kind of nastiest bit, that make it quite painful. Most people can only put up with it for really about a minute. And what I do is I stop people after five minutes, I don’t let them go on for a long period of time doing this, that’s long enough to see how they respond to it. And we’ve had healthy volunteers, people come in that don’t suffer from pain conditions, to undergo this, and we’ve had them bring in their own favourite music to the lab and we’ve compared that to different types of music and to other types of stimuli to see what’s effective.

The research that had been done on this before had been quite, you know, emphatic in saying that there will be a type of music that will be effective, that it’s likely to be relaxing music, very pleasant classical music that would be effective. We found that people were actually bringing in many, many different types, they were bringing in dance music, you know, to hardcore punk music, to styles that you would never, ever expect that would have any sort of pain relieving qualities.

However, when we put them through the pain tolerance testing what we’ve found, really, by and large, it’s that it’s the music that you love, that you have a connection with, that is most effective for you, that helps you to put up with pain and may even reduce how much intensity of the pain that you feel. You know, this was a surprise even to me, that these types of music that other people might well feel ‘Oh, that’s awful!’, you know, ‘How could you – that’s painful music – how could you even listen to that?’, that, if somebody has a connection with it and it’s what they love, that it will be effective for them.

Now, the studies that have been done have suggested that music’s distracting: it distracts your attention from the pain that you feel. But we’ve compared it to a number of other stimuli that the other studies have found distracting, such as people doing mathematical tasks, sort of something that is mentally challenging, we’ve had them listening to humour, so listening to audiotaped stand-up comedy – this was done in Scotland so all participants in the study listened to Billy Connolly – and although that also had an effect on their pain perception, we haven’t found anything else that has been so effective as the music.

So it highlights to the health professionals and to clinicians that this may be a very useful thing that people can involve themselves in their everyday healthcare and their everyday approach to dealing with their pain, and also that I hope that it’ll be brought into hospitals for use in painful procedures such as people getting their burns dressing changes, or people having intravenous injections, or anything like that that’s painful to go through. So, the great thing about this and about music is that it can hopefully be involved across different spheres of pain care.

Evans: That’s Dr. Laura Mitchell of Glasgow Caledonian University. And for me at least, listening to music could be the perfect companion to my newfound skill.

Corkhill: …And off. So just use those words in your own mind, okay?

Evans: Front to back.

Corkhill: Front to back. In… Round… Through… And off.

Evans: There’s a great scarf coming here.

Corkhill: There is. I’ve cast on just enough for you to make a scarf…

Evans: As you’ve guessed, we’re back at Stitchlinks at Bath’s Royal United Hospital where I’m Betsan Corkhill’s newest pupil.

Woman: I don’t like little wool, I’m one for chunky wool… ‘Cause I can’t hold the needles!(laughs) I make up me own patterns… that’s because I can’t use a normal one (laughs). I can’t fathom them out.

Paul: Did you knit before coming to this group?

Woman: No.

Paul: So tell me what this knitting group means to you.

Woman: Getting out of the house. I used to be sat indoors – I been in me wheelchair for 30 years and I used to sit indoors all day long on my own, while my husband was at work, looking at the four walls, and in the end it was staying in bed all day – which my doctor didn’t like. And I started coming here to the pain clinic and enjoying to do all me knitting now and come and see me ladies every week. This good lady Sarah taught me how to cast on, because I couldn’t cast on, I was hopeless! (laughs) I do it different to everybody else, takes me a lot longer… I’m getting there, I’m really getting there.

Evans: Oh, dear… I’ve been purling instead of plaining haven’t I?

Corkhill: That’s alright. In through the front…

Evans: Front.. front to back.

Corkhill: Front to back. [yes]

Evans: Must remember: front to back. I’m a little bit obsessive… Is this going to do me harm?

Corkhill: Very definitely not, because it’s a good obsession to have [laughs]. It puts you in to that relaxed meditative state and what we try and tell patients is that if they can do a little bit every day, it gives their mind a bit of a rest, a bit of a break every day, so it lowers the stress levels every day and you need to do that on a daily basis… You’re going backwards again.

Evans: Oh! Front to back!

Corkhill: That’s it! Yes.

Evans: So, do the ladies here get referred by the pain clinic, or…?

Corkhill: Referred by the – mainly by the nurse practitioner, but the consultants have started referring now too because we started the group nearly four years ago now, the doctors can see how successful it’s been that they are now referring, and also referring patients for individual knitting treatment and the patients that come for individual treatment have complex – may have complex problems, maybe psychiatric problems as well, or they may not be comfortable in a group situation as yet, then we can set their goals as coming to the group for the first time, for example.

Evans: Mhm… It’s a lovely colour. It’s a – well, it’s not pink, what is it called-

Speaker 1: No, it’s more a salmonly colour…

Evans: Yes.

Speaker 1: But we have a pink thing here. Kim over there, she doesn’t like pink, or her husband don’t – she can add pink, she can’t have pink! [Laughs] She was crocheting me a cushion, ‘cause I’m having my first grandchild next March, and she asked me what colour flowers I wanted put on it… And I said, ‘Pink!’ [Laughs] So she had to do all these little pink flowers…

Evans: So if you’re having your first grandchild, you’ll be knitting more?

Speaker 1: Yes – hopefully – if it fits! I’ve got to design them so they’re going to fit a new baby…

Evans: So, you use a wheelchair, you are housebound?

Speaker 1: Yeah.

Evans: And since learning to knit with Stitchlinks, it’s completely freed you up.

Speaker 1: Yep. Seeing the weather, I thought I was going to be the only one here, but no, we’re all here, enjoying ourselves…

Evans: Can anybody join Stitchlinks?

Corkhill: Yes. We have members from all over the world and actually that works quite well because, being online, anybody can join, it’s free, there’s all sorts of information on there on how to use knitting therapeutically… It’s a link with the research projects that we’re doing so it’s a link with information that’s always accurate and always will be accurate, because something like this could be sensationalised very easily. But we also have a forum, for example we have one member who is isolated on a farm in South Africa with fibromyalgia and housebound; there isn’t any hope that she will receive pain management information, but others who have been on pain management courses in the UK, in America and Australia, are able to help her. So, it works very well in that way. And it’s a trusted place where people can go and that’s how people use it.

The other thing we’ve found is that if you provide a forum where people feel safe, people with low social confidence find it much easier to talk through a keyboard and using a mouse than they do face to face, and what we have found is that that has improved people’s social confidence, talking to like-minded people and it’s always very positive on the group. They then go and seek out a face to face group somewhere, so that sort of starts the process right from that very beginning of low social confidence to improved social confidence.

Evans: What sort of people find knitting beneficial?

Corkhill: Well, what we’ve found is those that actually will accept that knitting may be beneficial – I know that sounds a bit strange, but the biggest problem we’ve had is actually the word ‘knitting’ and getting people over that word ‘knitting’. We’ve had people who have been previous knitters coming to the group, we’ve people who are knew to knitting, and we’ve even had people, mainly men, who actually think ‘Oh, I’ll never become a knitter’ but actually, once I reassure them that they don’t have to ‘become a knitter’ and all we want them to do is the process of knitting, they’re then quite happy to do it and they will knit on a regular basis and use knitting as a tool to manage their pain and to enter a meditative-like state, to do things like manage panic attacks, to improve their sleep patterns. So, anybody who’s prepared to try it, really – it has the possibility of being therapeutic for them.

Evans: What are you knitting there?

Sarah: [Whispered] Go away.

Evans: Go away?

Speaker 1: Sarah’s shy.

[both laugh]

Evans: And you, sir, you’re not knitting.

Speaker 2: No, I don’t knit, I’m only here to make the tea.

[Paul laughs]

Speaker 2: I’m driver and tea.

Evans: I suppose you can’t put a monetary value on what they’re getting out of it.

Osborn: You can say the health benefits are quite profound and quite diffuse, and you could probably say with confidence that some of them won’t come into hospital, whereas they might have before, or do things they might not have before. I wouldn’t even begin to know how much – how you would cost that, but, you know, one overnight stay in hospital costs thousands, so there you go. And the health benefits are phenomenal over the next ten, 20 years, compared to what can happen if you really do get quite disabled by pain and you get secondary problems.

I suppose it’s got teeth, it’s a serious thing that Betsan’s trying to do and it’s relieving the burden of distress and despair, and again, that’s something that’s priceless and helping people improve their quality of life. So it’s not a casual, cosmetic affair. Nothing else seems to help as much, so it’s earned its place – and, like a lot of things, initially people were kind of… maybe even quite derisory, but now, what else is as effective? I’d like to think that at some point, in the not too distant future, it’s uh, – pain clinics and a lot of outpatient places are being asked ‘Well, why haven’t you got one, because everybody else has?’, because the people that come, they run it themselves, doesn’t cost a penny really. It’s priceless!

Evans: Mike Osborn, psychologist at the Royal United Hospital’s pain clinic in Bath.

And that’s the end of today’s edition of Airing Pain. If you or someone you know had benefited from listening to these programmes and would like them to continue, then please consider making a donation to securing Airing Pain’s future. It’s easy to donate: just go to our website at painconcern.org.uk where you will find a ‘Make donation’ button at the bottom of the page. You can also download all the past editions from there and, if you’d like to put a question to our panel of experts, or just make a comment about the programme, then please do so via our blog, message board, e-mail, Facebook, Twitter, or even pen and paper. [all available from our website]

Speaker 1: Come on, come on, stop now… I need a blanket, please.

[Laughs]

Evans: I’m going to surprise my wife and finish off one of her jumpers.

Speaker 1: Oh [Laughs], alright, okay.

[Laughter]

Speaker 2: Aiming high yeah?

Paul: Before we go, I just have to say that I’m still knitting and I’m really enjoying it, I’m finding it beneficial, I’m finding it relaxing – so please do go to the Stitchlinks website. It’s Stitchlinks – that’s one word – stitchlinks.com, where you will find out more.

Contributors:

Betsan Corkhill, Stitchlinks
Dr Mike Osborn, The Science of Stitchlinks
Stitchlinks Members, Their Experiences
Dr Laura Mitchell, Music and Pain.

Paul Evans learns to knit, and how music can be used for pain relief

Paul Evans gets a knitting lesson when he visits the Stitchlinks group in Bath, where people use craft activities to manage their pain. Betsan Corkhill and Mike Osbourne talk about the medical science behind it, while the knitting group talk about their own experiences. We also meet Dr Laura Mitchell who subjects volunteers to pain tolerance testing to see how music can help relieve feelings of pain.

Contributors:

Betsan Corkhill, Stitchlinks
Dr Mike Osborn, The Science of Stitchlinks
Stitchlinks Members, Their Experiences
Dr Laura Mitchell, Music and Pain.

Patients and health professionals at a residential pain management programme in Bath talk about the pain management needs of younger people and the aims of the programme

To listen to this programme, please click here.

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Paul Evans visits the Centre for Pain Services at the Royal National Hospital for Rheumatic Diseases at Bath to find out about the pain management programme there. Clinical Director Dr Lance McCracken explains how the programme helps people get on with their lives and we meet the patient group to learn about their experiences in living with pain, what brought them to Bath and the things they’ve learned during their time on the programme. We also hear about how the team at Bath provide specific services to younger people and how pain affects their families and sleeping habits.

Issues covered in this programme include: Young people, residential programmes, rheumatic pain, family, mobility, pacing, physiotherapy, psychology, school, occupational therapy, social life, stress, drugs, side effects, hallucination, support for parents and sleep pattern.

Paul Evans: Hello and welcome to Airing Pain, a programme brought to you by Pain Concern, a UK charity that provides information and support for those of us who live with pain. Pain Concern was awarded First Prize in the 2009 NAP awards in Chronic Pain and with additional funding from the Big Lottery Fund’s Awards for All programme and a voluntary action funded community chest, this has enabled us to make these programmes.

Sandra: I’m Sandra. I’m from Bristol, and I’ve come here to try and see if they can help me with my pain.

Anne: I’m Anne. I’m from South-West Wales, I’ve been in pain since 1998 and I just want to get some mobility back, as well as getting rid of some of the pain.

Jenny: I’m Jenny. I’ve been in chronic pain since 2001 and I’m here to get some tools and a way I can manage my pain, and mobility and strength in my muscles and things like that.

Alan: I’m Alan. I’ve come down from Scotland to try and get my pain back under control, as recently it has escaped.

Jan Barton: Sam eventually went to a project in Bath for adolescents in chronic pain. It was an excellent project. They said: ‘we won’t cure your pain, but we can teach you how to deal with it.’

Evans: I’m Paul Evans and each fortnight on Airing Pain we look at the topics that affect those of us who live with chronic pain: the coping mechanisms, medical interventions and therapies that might help us to regain control of our lives. But first, our usual word of caution, that whilst we believe the information and opinions on Airing Pain are accurate and sound, based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.

Today we’re focusing on the Centre for Pain Services at the Royal National Hospital for Rheumatic Diseases at Bath. It’s a national, highly specialist service for treating young people and adults who have been to other pain services but have continuing problems. The courses are usually run on a residential basis and its clinical director is consultant clinical psychologist Dr Lance McCracken.

Dr Lance McCracken: Most of the cases we see defy easy categorization, in other words, they – a lot of cases have somewhat complex diagnostic situations, they’re having a hard time getting a single consensually agreed-upon diagnosis. Having said that, we see a lot of people with generalized pain problems, not just affecting one part of their body – it may have started in one part of their body, but then it affects other parts. People who’ve had back injuries and who’ve had surgery for that and who haven’t done well. Patients with generalized muscular skeletal pain or with fibromyalgia, post-lumbar surgery pain, are probably some of our biggest groups.

A pretty decent fraction of people we see are patients who have had little obvious precipitating circumstances, like they just sort of… pain came on without a particular accident or illness and so that’s maybe 20% or a fifth of the people we see have just chronic, very disabling pain but without a clear reason.

A difficult pain problem can happen to almost anybody. The main criteria for us is that if pain is having a very large impact on people’s lives, socially, and with their physical activities, and emotionally, with their sleep patterns, so if the impact is large or significant, and if other treatment services haven’t significantly helped, if people are still suffering. The largest patient group that we decide not to treat are people who are doing pretty well, meaning they have chronic pain but their functioning is ok.

Alan: I knew about this place and I suspect all the others that have researched pain and the various things that can be used to treat it and so on, knew of the existence of Bath. But I didn’t actually choose to come here – that was a referral from my pain consultant, who said that this was a different approach and one that should be considered alongside all the standard physiotherapy and all the standard drugs, that we’ve all gone through one way or another.

Evans: You’ve all come from areas – South-West Wales, Bristol – not so far – Birmingham, Scotland… Was there nothing like this in your local area?

Jenny: Nothing at all. They do ‘to be kind to yourself’ kind of courses where they look at pacing and relaxation, but the difference with this kind of course is, you know you’re not going to ease your pain. In fact, when you come here, your pain may even get a little bit worse, because obviously you’re doing more what is called ‘body conditioning’ here. It’s not so much physio, it’s choosing exercises towards the values that you want in your life. And there’s nothing like that in Birmingham, or anywhere nearer, so that’s why the pain specialist did actually say that this is the best and only course in the UK that actually does such a programme.

Alan: One thing I will say just to stand up for Scotland is there is a similar course up there, but it’s done on a day release basis down in Glasgow and that just wasn’t the right attitude for me. I wanted to get it all done in one block.

Anne: I could say about my area in Wales. They have got Bronllys which is a residential course, but they don’t have facilities for people that need the special beds and maybe some nursing input, so they… I was referred to Bronllys, but they referred me on to here.

McCracken: People come here out of desperation, a lot of times. People certainly come with the hope or wish for a cure, that’s for sure. Some people come with a confused or confusing set of goals, because they, sort of… on the one hand they understand that we don’t do a cure here and their doctor tells them that, yet on the other hand, they still want it. And we’re quite straight from the beginning: we don’t offer a cure, if what we mean by that is that the pain will go away. Patients have great results, but they don’t get cures. Not for the most part.

Evans: You say, ‘great results’ – what is a ‘great result’?

McCracken: I mean, in general, a great result would be… patients want to do things, people want to do things in their life and since their pain started, they’re not doing those things anymore – they’re spending their time trying to deal with the pain, instead of doing these other things. For us, a great result is making that shift back, away from wrestling with the pain and seeing another doctor, seeking a cure, spending all your time on that and back on to the kind of family life and social life, and work life and physical activities and the kind of complete life activities that they actually want to do, yeah, back on their goals and desires, not wrestling with the problem.

Evans: Dr Lance McCracken. Some residential courses at Bath Centre for Pain Services last for three weeks, but for patients like Sandra, Anne, Jenny, Alan, who are all less able-bodied, the courses run for four weeks. And they stay within the hospital, rather than the residential flats. I spoke to them at the start of Week 3.

Alan: First of all, they get to know us. They have a standardisation to find out where we are to begin with, both in terms of measurements, attributes, the way we approach pain, so they know where we are. I presume, at the end of the 4 weeks, they’ll do that again and see what the difference has been. And then we have a number of strands throughout the 4 weeks: one looking at body conditioning, which is looking at how we adapt to physiotherapy, in our… because when you’re in a wheelchair, you can still do a standing exercise, which is a different approach than most physiotherapists get. That’s one strand. And then we have the psychology strand…

Anne: We’ve got three psychologists, actually, covering the course.

Evans: And what do they do with you?

Anne: ‘Mindfulness’, it’s called.

Jenny: You can’t change your thoughts, but it’s looking at how you can notice them, but still try and give yourself options. The pain’s always going to be there, so it’s trying to manage your life, so the pain’s there… instead of relaxation, it’s not a relaxation thing, it is more about being aware, isn’t it, of our thoughts?

Alan: Yeah, so you don’t go forward and back all the time, but you become aware of what’s happening now. You don’t analyse either, that is one of my big weaknesses.

Jenny: Yeah, I think it’s all of us.

Alan: But you just observe, you know, what’s going on.

Evans: One of the frequent questions Pain Concern gets on its message board is: ‘What have psychologists got to do with pain?’

McCracken: It’s a great question. It’s important and very confusing and so important it’s worth saying it as many times and in as many different ways as we can. Everyone comes into treatment and at one level they want the same thing: they want their life to be better. As human beings with pain, we quite naturally look at the problem as a pain problem and like: ‘The pain is there, I used to function, the pain came, now I don’t function. If I could get rid of the pain, my functioning would be good.’

That’s how they understand the problem. It’s completely natural – I’m not saying that’s wrong, I would never say that that’s wrong. There is something very naturally human about encountering a pain problem like that. The difficulty with encountering a pain problem like that is that people’s experience over 10, 15, 20, 30, 40 years is that the more they try to follow that, the more frustrating their life gets and the smaller their life gets. Nonetheless, the other goals are still there: ‘I want to participate in my life with people I care about. And I want to finish school. I want to do meaningful work. I want to be a role-model for my children.’ And notice: it’s all behaviour. So what if psychologists had a technology to help that behaviour to happen?

Alan: A lot of us will want a reason for what’s happening, so when we get some pain or whatever, we try to analyse why, was it because of this, that or the other, but that’s taking you away from what’s going on. You’ve got some pain now, at this particular moment, and you’ve got to work with it at that time.

Evans: So it’s getting through the moment rather than the longer term.

Jenny: Yeah, not looking at… it’s like our minds want to offer us a thought straight away and an action straight away, so it’s trying to do something different from the norm. So it’s not auto-pilot. So if we approach something that in our history – it may have been we’ve had a fall before, or something like that – it’s about taking it at that moment, step by step, trying to notice that we’ve got those thoughts of anxiety or ‘we can’t do it’, but trying to see our current ability, if we can manage to do that particular thing. So we do a thing called a ‘check-in’ and we do what’s known as the ‘hot cross bun’ and that’s we have to check in with our body sensations, our thoughts, our feelings and our actions. And then that gives us the options that – do we just go down the path of least resistance, or do we try and go towards what we value in life.

McCracken: Most of the treatment time for most of the patients we see is group-based. Now, we provide an array of different services. There are some services that we deliver that are exclusively individual-based from start to finish. We do a pretty small fraction of that. This is for people whose difficulties and circumstances would prevent them from participating in a group and doing well in a group. Most people are in groups – groups of between six and 10 people. Groups are good places to do treatment in some ways, because it’s a social situation, it’s like life: it includes dealing with other people, communicating with other people and dealing with their own emotions and experiences that happen around challenging social circumstances. So there’s a bit of reality and there are challenges there that are very useful in treatments, so that’s a – that’s a good side of that.

Evans: How far into the programme are you?

Sandra: Midway, beginning of the third week.

Evans: So where are you all mentally in your change?

Alan: Well, I’m just still open. They’ve convinced me to carry on this thing for the next 10 days and that’s what I’ll do and try and use what I’ve learnt so far and what I will learn in the next 10 days.

Evans: Why did they have to convince you?

Alan: Because that’s my weakness, in that I have to be convinced of something to be able to carry on giving it its due and being able to say, ‘yes, you’ve earned the right for me to carry on listening’. Hopefully, I’ll begin to live more in the moment, begin to choose things, rather than decide, which is one of the benefits of this course.

Jenny: I can only say for myself that I have noticed changes – that I am really recognising thoughts and how they are holding me back a lot of the time, you know, my feelings. And I may have noticed them before, but I didn’t really know how to deal with them and also they used to stop me from doing quite a lot of things, whereas now I’m a little bit more proactive in doing certain things in my life. Not pushing them aside – no, recognizing they’re there – but I can still move forward. So, me personally, I’ve noticed that I’ve… I have had some changes in the way I do think.

Evans: Do you think you will be able to take that out into the real world, beyond the hospital walls?

Jenny: It’ll be difficult. It’s going to be difficult. You know, we have weekend leaves, we’ve just all had a long weekend and you do come across a lot of challenges and I think a lot of it’s down to communication as well, isn’t it?

Alan: Yeah, one of the things I think will help us is – those of us that will be able to take advantage of it – is that one day a week – it’s turned out nearly, or one day a fortnight – partners and family come in and sit in on it. And not only does that show them what’s happening, but it gets them involved, so they’ll be able to work with us afterwards to transfer it to the real world.

Evans: How the team prepares them to re-enter the real world is something we’ll deal with later in the programme. But we’ve already said that the Centre for Pain Services in Bath treats people of all ages, which includes children down to the age of 11 and sometimes even younger. Dr Hannah Connel leads the team of physios, occupational therapists, doctors and nurses who all provide this service to help young people with chronic pain get back to age-appropriate activities. You will also be hearing the voices of Sam Barton and his mother Jan, who you may remember from an earlier edition of Airing Pain. Both attended the course when Sam was a teenager. So, age-appropriate activities?

Dr Hannah Connel: What we mean by age-appropriate activity is anything that you would expect a young person or an adult of that age to be doing. So for somebody who’s 11 to 18, most young people are in education, so it’s helping people with pain access education. For an adult, it might be work or it might be participating fully in a family life.

Evans: I’ve talked to somebody who had been on this programme. He was a teenager when he came. He said, ‘drinking, going out with my mates, going to school and all that stuff’, and that’s what I associate with a normal teenager.

Sam Barton: I just wanted to work, wanted to get a job, wanted to be normal, wanted to go out drinking, doing everything that, you know, a normal 16-17 year-old would be doing…

Connel: And that’s exactly what we would hope young people would be getting back to doing, so in one of our young adult programmes for 18s through to 20s, we expect them to do that. And the team consider it a very good outcome if they’ve been and had a really good night out, because that’s what their age group should be doing, so that’s age-appropriate activity by my book too. Many services – some in this country, but quite a few abroad – will take the children away and admit them and treat them more individually. We would rather treat the parents and the child as a dyad, because basically the parents are there – once they get home they’re present 24/7 – whereas we’re not. So if we can get the parents to manage things differently, then the outcome’s overall much, much better.

Evans: But is there a bigger point here that pain doesn’t just affect the individual, it is, well, a family thing?

Connel: Yeah, absolutely, and there’s some really lovely research that one of my colleagues did a few years ago looking at the impact of a child’s pain on the parents and the parents were describing things like feeling completely hopeless, feeling accused of causing the problems, you know, just stress levels are very, very high. So it undoubtedly affects the parents.

I think you need to remember that it affects grandparents and extended family and also brothers and sisters. So for example if you’ve got a sibling that can’t travel in a car, that has huge impact on what the family can do as family-shared activities, holidays, all sorts of things. Parents may have to give up work to look after the child with pain, which has a huge impact on the finances of the family.

Jan Barton: When Sam was first on all the medication, and he was about 13, when we’d come back from London and we’d been told: ‘Well, there you go guys, he’s on the meds, get on with it, yeah?’

Unfortunately, the combination of the drugs, we hadn’t realised that Sam was starting to hallucinate and see things. So it all came to head one morning when Sam and his little brother were sitting upstairs in bed and Sam was seeing things. And he started screaming, and he was having florid visual hallucinations. And, unfortunately, his little brother was sitting next to him when he… when it happened and he was quite traumatised by this and the fact that then Sam was seeing things walking round the house and we’d go to sit on a chair and Sam would say: ‘Don’t sit there, because there’s – Marvin’s there.’ Because the way Sam dealt with it was that he invented a goodie called Marvin. Now Marvin would chase away all the bad shadow people, weren’t they? Shadow people?

Sam: Yeah, you know, at the age of 13, when you start seeing shadows step out of the wall, I mean, it was really bizarre, it was really strange and it was really scary at the same time.

Jan: However, his little brother had even less insight as he was only 10 and was absolutely traumatised by all of this. And as an example of how it then affected the family group, for 6 months afterwards, he would not go anywhere in the house on his own.

Connel: So our approach here is: yes, the child has the pain, but the impact that the pain has is on the family as a whole and that’s what we’d like to treat.

Evans: Parents aren’t just observers, then?

Connel: No, no – parents here in Bath are certainly not observers. As part of the assessment process, parents have to consent to taking part in the programme fully. There’s an element of the programme that looks at parenting and we try to enhance some parenting skills that we’ve learnt that are helpful for parents who are struggling to manage a child with chronic pain. The parents also need some looking after as well, because they get very, very distressed, so they need some skills and an approach to managing their own distress and living the life they want to do for themselves, rather than the whole family focus being just on the child. And once that can open up a little bit, parents and children find some pretty different ways forwards and some ways of doing some of the things that they’ve lost along the way.

Evans: Describe some of the parenting skills that you might try and give people.

Connel: Well, I guess it’s less certain parenting skills, although sometimes those do need to be looked at, sort of, you know, praising up good behaviour, managing sort of, tantrums and thinking about how to manage, sort of, difficult situations, managing the return to school, how to talk to teachers, how to get the educational support that is needed. But we aim as well to help parents look more flexibly at the situations that they’re in; to think about how their child’s pain affects them; think about how their thoughts and their emotions and their distress might lead them to react or lead them to act in certain situations that in the long term aren’t particularly helpful. A great example of that is when children are in excruciating pain at night and you feel very alone and you feel very, very scared – a lot of parents will have the experience of having taken their child to A&E and most people would report that that probably wasn’t the best course of action. So what we aim to do is help the parents understand where they’re at, so that they can make choices and they can do things that in the longer term help them and serve them better.

Evans: Because parenting a teenager who is not in pain is not always the easiest thing in the world, is it?

Connel: No, parenting teenagers is not easy at all and I think when you’ve got a teenager who’s in pain, you’ve got the ordinary teenage issues and the pain issues on top and the parents often say: ‘I’m not sure what’s pain and what is just the child being the age that they are.’

And we give parents, I guess, here, an opportunity to think that through, so that they can try to manage difficult situations, holding both those ideas in their heads and making the best possible decision they can. I think one of the things that a lot of parents do is, because they feel sorry for their child in pain, is they let them away with things, which is very, very understandable, but sometimes doesn’t help in the long term.

And a great example of that would be: if you’ve got a child who has been up all night, hasn’t slept well, is feeling ghastly, letting them sleep in and having breakfast in bed. Now that’s a lovely parenting thing to do, and certainly, in certain situations, I would encourage it completely. But if that becomes what you do most days, then you haven’t got a young person who’s getting up, who’s doing things for themselves, or is in a place ready to go to school.

Barton: I think being on the residential course in the Pain Clinic at Bath with Sam was really helpful because I was able to speak to other parents in a similar situation, I would be able to be taught ways of trying to manage this. When you do a course like that, they ask you: ‘What is your aim for the course?’ And mine was just to try and find a way to help Samuel. I think that was my goal. I didn’t actually believe that – when I went on it – that we could. So that’s another thing I guess I gained from it: that we did find ways of helping him. And it’s simply being with other people and working together and being taught ways in managing, it was very helpful.

Barton: It was very helpful being in a situation with people obviously who are experiencing the experiences that I was going through at the time, you know. And it was a – it sort of lifted me up a bit, you know. They were trying to work us into a better routine. Obviously, I was very sleep-inverted, so I was not sleeping in the night, sleeping through the day, you know, which was the same as everybody else who was there really, you know.

Evans: Staying with the parenting business, sleep and teenagers go hand in hand. With the best will in the world, it can be difficult to get a teenager out of bed.

Connel: Absolutely.

Evans: So how do you change a sleep pattern?

Connel: First of all, I think we need to remember that teenagers go through developmental bursts, when they sleep an awful lot. And they need to have extra hours in bed. When you have pain, it’s very tempting to sleep more because you’re not so aware of the pain, to sleep more because you haven’t got other things that you can do anymore and also there’s the quality of sleep that’s really poor and disturbed, so young people often spend a lot of time in bed, but not actually sleeping well.

What we would look at is if the sleep is getting in the way of young people being up and active in what I would call the ‘active hours’, so Monday to Friday, between about 9 and 4, so roughly the school plans, it needs to be looked at. If young people need to sleep in at the weekend, then that’s what they do.

In the early days of turning round a very disturbed sleep pattern, you need to keep the consistency over the weekends. So you need to have a sleep pattern where young people are going to bed at an appropriate time, but more importantly getting up at a regular time, whether they’ve been to sleep or not. It’s a bit more of a jetlag approach. Young people feel really quite awful in the first few days, but the sleep changes happen quicker.

I think when we’ve tried to do this more gradually, more gently – so going to bed an hour earlier, getting up a little bit earlier – young people feel horrible, but for even longer. So we would rather do it quite quickly. And I think it’s that those times where young people need to be getting up at weekends and not having a lie-in.

But once their sleep pattern has improved overall, then they can go back to a more age-appropriate, long-lines sleep pattern at the weekends only, as long as they’re up for school or whatever activity that they want to do in the week.

Barton: And it was just a case of, you know, making us get up in the morning, making us do some exercise, whether it was painful or not, you know, and just trying to get us into a better routine, you know.

Evans: I’ve heard the teenagers here use the term ‘boot camp’?

Connel: No, not really, um, I think it could sound like that because there is a clear programme that they’re expected to participate in. But I think the approach here and hopefully the kindness and the insight of the staff would mean that the experience that they have when they’re here sends that term away. Because I think ‘boot camp’ means to me, sort of, pushing somebody to do something, forcing them to do something and that’s certainly not what we want – we want young people to work out what works for them and choose to do it because the outcome for them is what they want.

Evans: It’s a 3-week programme. Can you see the changes in personality as they go through it?

Connel: Oh, we see some dramatic changes in young people. When young people first come in, the first couple of days of the programme, they’re very, very quiet, they hardly talk to each other or the staff and the parents have to do a valiant attempt to keep the conversation going. As the first week goes on, the young people sort of… you get to know a little bit more who they are and what they’re like and you start learning about them and they learn about us as a team as well and we start getting to know each other and getting along.

The middle week, the parents are not present for many sessions, and it’s at that time that the young people really do come out of themselves and we get a lot of fun, we get their own choice of music coming in, they make friendships within the group and have quite a nice time, even though they are working very, very hard and addressing some difficult material. And I think in the third week, you begin to see the young people separate a little bit from the clinical team and start thinking about going home and then you can get much more of a sense of who that person really is, what they’re going to do when they get home and the sort of life that they really want to be leading.

It’s not uncommon for young people to change their hair, or change their clothes, or look quite different as they leave the programme. So we’ve got the physical gain, so that they’re often fitter and walking better, but that’s often enhanced by a change of hair-do, make-up being put on, different clothes, something like that as well. So it’s a lovely change that we see over the 3 weeks and it’s even better at the 3-month follow-up – they’re even more different there.

Evans: How do you prepare people for going to the outside, if you like, after the 3 weeks?

Connel: Okay, the last week of the programme really is focused on that. There are sessions where young people work out their timetables with school, think about how they are going to fit exercise in, think about what… which friends they are going to contact, think about which healthcare professionals are going to be useful to them in the future. So the whole of the last week is thinking about what you’ve gained in Bath and how you’re going to take it home and make it part of your life for the long term.

Evans: Dr Hannah Connel. And that’s the end of this edition of Airing Pain. If you or someone you know has benefited from these programmes and would like them to continue, then please consider making a donation to secure Airing Pain’s future. It’s very easy to do: just go to our website at painconcern.org.uk, where you’ll find a ‘Make Donation’ button. You can also download all the past editions from there and if you’d like to put a question to our panel of experts or just make a comment about the programme, then please do so via our blog, message board, e-mail, Facebook, Twitter or even pen and paper, in which case you’ll need our address which is: Pain Concern,1 Civic Square, Tranent, EH33 1LH. And I’ll leave you with some final thoughts from the patients at the Centre for Pain Services at Bath.

So, a question to all of you – half-way through the programme, are you glad you came?

Anne: Oh, absolutely.

Sandra: Yeah, absolutely.

Jenny: Yeah, you know, best thing that’s ever happened.

Alan: I hope I am. But again, that’s down to me, not the course – it’s opening my eyes up, and it’s – it’ll be how it gets used when we leave here.

Anne, Sandra: Yeah.

Alan: And I’ll be able to answer that question when we come back for a review session, once we’ve had three months or whatever, of using it. As you yourself said, would we be able to apply it in the real world? That’s the critical answer. And if it’s yes, then it’s a really good course.

Contributors:

Bath Patient Group
Dr Lance McCracken, Clinical Director, Centre for Pain Services at the Royal National Hospital for Rheumatic Diseases, Bath
Dr Hannah Connel, Chronic Pain Service Lead
Sam Barton
Jan Barton.

Patients and health professionals at a residential pain management programme in Bath talk about the pain management needs of younger people and the aims of the programme

Contributors:

Bath Patient Group
Dr Lance McCracken, Clinical Director, Centre for Pain Services at the Royal National Hospital for Rheumatic Diseases, Bath
Dr Hannah Connel, Chronic Pain Service Lead
Sam Barton, Growing up in Pain
Jan Barton, Personal Story.

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