Pain Concern

How nurses can use relaxation therapy, massage, acupuncture and empathy to help people manage their pain

To listen to this programme, please click here.

[For a Welsh language version of this transcript please click here.]

‘Imagine how it feels like if you’re in pain and people won’t help you.’ Like other healthcare professionals, nurses can sometimes struggle to understand the perspective of people living with pain. At a training day for student nurses devoted to chronic pain, Gareth Parsons impresses on his audience the importance of believing the patient and delivers some uncomfortable truths based on his research about the frustrations people with pain often have of healthcare professionals: ‘you are the problem!’

Equipped with the training they receive, hopefully this group of nurses will instead be part of the solution. The first step is understanding that chronic pain is a condition in its own right – this way the nurses will be aware of the problems of treating chronic pain as if it were acute (for example, excessive use of opioids) and be able to help tackle anxiety and fear.

With a better sense of the nature of chronic pain, nurses will be less likely to ‘throw drugs’ at the problem, Owena Simpson says. She guides the student nurses in a session of relaxation therapy, while Maria Parry teaches the students basic massage techniques and recalls her own experiences of how a patient of hers was able to overcome insomnia thanks to massage therapy. Gareth Parsons finishes the session with an acupuncture lesson and explains why this treatment may be more effective for some patients than for others.

Issues covered in this programme include: Medication, alternative therapy, relaxation therapy, massage, acupuncture, educating healthcare professionals, insomnia, over-prescription, side effects, nociceptive pain, patient voice, patient experience, palliative care and inflammation.

Paul Evans: Hello and welcome again to Airing Pain, the programme brought to you by Pain Concern; a UK based charity working to help, support and inform people living with pain and healthcare professionals. This edition has been funded by an ‘Awards For All’ grant from the Big Lottery Fund in Wales.

Owena Simpson: As adult nurses we are very keen or go quite often first of all for medication rather than looking for alternative ways of managing people in pain and it’s helping patients to recognise that there are other ways of managing chronic pain rather than going straight for the medication and all the side effects that that carries really.

Evans: In this edition of Airing Pain I’ve come to the University of South Wales to see how a group of student nurses are given an insight on how they might help people with chronic pain in their future careers. And this is a good time to join them because this is the very last lecture of their three year degree course in adult nursing. It’s taken by senior lecturer Gareth Parsons, who, when he was a clinical nurse specialist in pain management developed nurse-lead chronic pain clinics in acupuncture, transcutaneous nerve stimulation (TNS) and relaxation therapy.

Gareth Parsons: Today is going to be a little bit different: we’re going to expose you to some of the interventions that people in chronic pain might experience and these are all interventions that are delivered by nurses. So we’ve got massage, which is going to be done by Maria Parry.

Maria Parry: We had a patient who had actually broken his spine and he would come back and forth for respite every 6 weeks and he had extreme pain issues from spasms in his legs and from cramp. He never had a good night’s sleep, he was constantly moving and his pain issues meant that he could never get comfortable.

Parsons: Owena is going to be doing relaxation.

Simpson: It’s peak time for assessments and stuff so there’s just been one assignment handed in and now the dissertation is out there a bit, isn’t it? So are you all feeling stressed? Or some of you maybe not. But there are underlying signs – that may be crying, headaches and colds all the time and just generally feeling on edge.

Parsons: If you look on this chart here, you’ll see around the sides of the head there are lots of acupuncture points. The cranial nerves have got lots of little supplies to all the skin and the muscles around this area – very easy to stimulate pressure. So basically just rubbing the side of your head here – you probably do this, don’t you? It’s to give you food for thought on other ways you can help people in pain and it’s also to make you think about pain in a different way to how you think about it at the moment. So with that in mind I have a question for you. Do you feel there’s any difference between acute, chronic and palliative pain? What do you feel differentiates them? Length of time? Type of pain? Okay, so differences in intensity or recurrence – you know, whether it’s there all the time. Severity? So you’ve captured some of the things I’ve said and also maybe come up with some of the myths which we’re going to explore.

If you look at definitions of these different types of pains in the text books, this is what they say: acute pain – recent onset, it could be something that happens for an instant such as when you have a needle stick or you have an injection. Or it could be something that lasts for a few minutes or a few hours. Most people would say that acute pain is something that lasts less than 3 months. We often think that acute pain has a causal relationship, so you know what has caused the pain – it’s immediate. That toothache is caused by your dental care, you may have an injury or you may have an underlying disease that is causing the pain. And it’s possible to estimate the length of duration; we can think of it as having an end point. And you often see these things called pain trajectory, so they can actually map out what the classic acute pain would be for somebody who’s had a hernia repair after surgery, or somebody who’s in labour. People have actually mapped these out – what the characteristics of this pain are, how long it’s going to last and you can see the differences between them.

If you look at palliative pain the length of it varies. We mustn’t just think of palliative as being in the terminal phases. If you talk to Maria about palliative care, she’d say it’s actually about when you change from active treatment to prolong life to treatment to evoke quality of life. It depends upon the nature of the disease, because most people think of palliative care as being about cancer but it can also be about other chronic diseases. And it usually, but not always, worsens, as it progresses. But there’s a causal relationship due to the disease or due to treatments.

If we look at chronic pain, you’ve all picked up that chronic pain is something that has a long duration and the actual idea of chronic pain has been described in various ways. Most definitions would agree that it is something that has persisted for more than 6 months. Some would say more than 3 months, others would look at other criteria for it. This means that the pain has persisted beyond normal healing processes and what it might mean is there might not be an identifiable cause for the pain and the duration of the chronic pain is unlimited and there’s no certainty of an end. It’s very rare that chronic pain is cured. And I’ve looked after people who were born in pain and have lived 80 years in pain, as well as people who’ve acquired pain through something that’s happened to them in their lives. Can you imagine what it will be like to be in pain for 80 years?

So I want you to think back last year about there being two main broad categories of pain. The first one is nociceptive pain. This is where your nervous system is essentially healthy and intact. The second one is neuropathic pain. This is pain where your nervous system is involved in some way in producing the pain or making a pain that exists worse. So there’s something that has happened to the nervous system. Now these are quite clear-cut things to look at when you’re looking at acute pain. But when you look at chronic pain what happens is the nervous system changes; there are physiological changes that go on in the nervous system that actually can make what starts off as a nociceptive, normal pain into having some of the characteristics of a neuropathic pain because of the nervous system is plastic, it changes and alters.

So because of this complexity, there’s been this declaration that chronic pain is a major healthcare problem in its own right. This is the European Federation of the International Association for Study of Pain Chapter Declaration – that pain is a problem in its own right. This has been supported by the European Parliament and it’s also been debated at the British Parliament. So if we think about why chronic pain is a problem in its own right – it’s because the cause of pain may not be apparent. If you try and link chronic pain to a disease and there’s no sign of the disease – what are you saying to the person with chronic pain? Your pain doesn’t exist? And one of the problems we have with pain is we view pain through the lens of a bio-psychosocial model. However, in reality we pay lip service to it.

The reality is people in chronic pain have a lot of focus on the biology, some focus on the psychology and very little focus on the sociology. We do need to think about what’s caused the chronic pain or what the aetiology is. More importantly I would like you to know what the patient’s story is about the chronic pain – what their narrative is. We should listen to what they say and believe what they say and adjust our thinking so it’s in tune with what they’re thinking about their pain. And what we should aim to do is reduce the risk of developing chronic pain because once someone’s got chronic pain, it’s much harder to manage than if you can stop someone from getting entrenched in their chronic pain. So we need early appropriate assessment.

We need to believe the patient – remember the cause matters but it’s not the only factor. It’s not the most important factor either. More importantly we need clear communication – we need to explain things logically and in a way that people can understand instead of throwing jargon at them. We need to clarify misconceptions that people have because that’s a way to tackle harmful pain behaviours. We need to tackle fears and anxieties. We should take a balanced holistic approach not just focused on the biological. And we should aim for good earlier appropriate pain relieving methods and that does not necessarily include drugs. Drugs with people in chronic pain can become part of the problem rather than the solution.

Hopefully I’ve given you some food for thought and challenged the way you think, a little bit, about chronic pain. And I hope you enjoy the experience of having some relaxation, a hand massage and me having my opportunity of revenge by putting some acupuncture needles in you. I know I’ll enjoy that bit! Any questions?

Parry: I’m Maria Parry, a senior lecturer in palliative care. I’m a massage therapist and today we’re teaching the third year students alternative ways of looking at chronic pain management. So, getting them to think about using other therapies in relation to chronic pain management by experiencing some of those therapies themselves.

[To students] Right, okay – are you all settled? When we think of pain we think of the pill box. I was lucky enough quite a few years ago as a staff nurse to be given the opportunity to train as a massage therapist and work within the Trust. They trained 6 of us at the time and I started to see that by using very simple massage on patients the benefits were phenomenal.

So what we’re going to look at is a basic hand massage. I’m looking at using massage techniques and putting them into a very simple hand massage that, in essence, you can use some of the things that you pick up today on any patient without calling it a massage – you’ll put cream on somebody’s hand or feet (this transfers exactly to the feet and I’ll talk about that as well). So you could use some of these techniques if you knew somebody had a chronic pain issue – you could refer them to somebody else or you could think, ‘Well, I have 5 minutes to sit here and put some cream on and that may help.’

A lot of this is about the relaxation – we’re not treating anybody here and if you look to the contraindications to massage they’re as long as your arm. So you wouldn’t massage anybody and a lot of people with chronic pain problems will probably have some of the contraindications. They might well have arthritis, they might have poor skin, they might have scars, they might have inflammation. So you have to put it into perspective. You have to look at the benefit versus the risk. But we are looking at something that is incredibly relaxing; I’m not looking at treating anyone with this.

So, basically, get as near as you can – hence the comfy clothes. I always say no short skirts today. I’m using a very basic grapeseed oil – it’s one of the best carrier oils for massage. Sometimes when you go to see a massage therapist now a lot of them will use a mousse or almond oil which is very lovely and very expensive. Obviously think about allergies. You have to think about the kind of oil you’re using. We’ve already highlighted some of the issues in clinical practice. If you’re going to use oils to do this and use it as a therapist of course you have to think about consent, etc.

Right, okay – you need to have a partner each. So what I want you to do is roll your sleeves up, get a chair opposite, get your pillow and your towel.

Evans: So Becky, this is your last lecture in your 3 year nursing course. And this is the first time you’ve actually come across chronic pain?

Becky: Many years ago I worked as a pain specialist medical secretary and also worked in a physiotherapy practice, so maybe it’s because I worked with physiotherapy at the same time. Maybe it’s how this type of thing, I see the benefit because I’ve already seen the benefit in the past. I like to have a Thai massage sometimes so I see the benefit in that myself.

Evans: Ifan, You’re having a massage by Becky. Were you surprised by anything in the lecture this morning about the difference between chronic pain and acute pain?

Ifan: I actually have done a placement at the Narberth, which is a palliative care environment so it’s something that I have been used to.

Evans: I’m stopping the massage process – how is it going?

Ifan:: It’s lovely. Really nice.

Parsons: This is somebody with complex regional pain syndrome type 1. This photograph was taken in June and it was a very hot June day. This is how he walked into the pain clinic. What do you see? We didn’t ask him to take off his shirt by the way. He came in without a shirt on. If you saw this person walking down the street because this is the way he walks around the street – you’d think he’s a mental health patient just by looking at him? Yeah? I mean he actually said to me, ‘Gareth, people think that I’m a loony. But this is the only way that I can control my pain without using drugs.’

So what we’re seeing is a series of different kind of pain behaviours. This is his original site of injury – his wrist. He fell over and fractured his wrist. He healed up lovely; the orthopaedic surgeons were really happy with him and sent him away. After a week of his injury he was complaining about having this burning pain all the time but they just said it would settle down. Five years later he comes to us in the pain clinic in this state. He’s got an expansion of his original pain area. In fact, the whole of his arm is in pain and in most of his torso he experiences pain. The reason why he’s not wearing a shirt is just the feeling of clothes on his skin causes him pain. He has this altered sensation. He’s also got something called cold allodynia, so cold causes him pain. Just on his hand around the site of his original injury. A breeze in the room going over him causes him pain.

The other thing he has is mechanical allodynia. When he came in this guy took his sling off because he kept his arm in a sling all the time. Which has caused him a problem with his shoulder; he actually has what we call in lay terms a frozen shoulder because he wears a sling all the time. Because every time he moves his wrist it causes him pain and that’s why he is resting his wrist on his leg.

He’s also got excessive counter stimulation – what he’s doing on top of his arm is he’s taking a cigarette and burning his skin because that relieves his pain. He was referred to a psychiatrist by the orthopaedic surgeons as somebody who self-harms. He came to us after being treated by the psychiatrist for suicide. He never had any suicidal thoughts but they treated him with anti-depressive drugs because he had been referred for his self-harming behaviour.

Also he’s got a TubiGrip on him but it’s not doing anything except telling other people that he’s got a problem with his arm. So if you walk around with a sling on and a TubiGrip on your elbow you get sympathy from people – they’re careful around you, they don’t bump into you. He hasn’t actually got an injury in his arm; his injury is in his wrist. But the Tubigrip is more prominent – so it’s a pain display behaviour.

You’ve just said that you think he’s a lunatic. So what does he think of you? This is from my research and it looks at patients’ perceptions of healthcare professionals and basically for patients, you are the problem. Members of the general public are problematic as well but you’re the real problem, because you’re the ones they turn to for help and you don’t help them. You actually make their situation worse. And the ways you do this is that you don’t believe them. Or you’re not interested in them. Or you treat them like an item to be processed. ‘Come in, see us, do this, have this treatment, go away.’ And they feel like they only get help if they demand it. But when they demand it they get labelled as angry and aggressive and that gets put in their notes. And then the next time they come in they have to make sure they make an appointment with someone else there to protect the doctor.

And their chronic pain is treated as if it’s an acute pain because the main way that you deal with it is to throw drugs at it. And you throw drugs at it that work on a healthy nervous system. And if you don’t believe me, this is from my research: this is prescriptions for chronic pain at a typical Welsh GP. The size of practice is about 12 000, which is about typical for a GP in this area. In my research I tried to recruit people that had chronic pain but the GP didn’t actually keep chronic pain as a label in their computer system to identify them, so I had to find proxy ways of doing it. I thought, ‘How many people in this practice have been prescribed an analgesic for at least 6 months?’ That’s one way of finding out if you’ve got chronic pain. If chronic pain lasts for 6 months let’s look at the number of analgesia. Fifteen per cent of this practice are taking relatively strong to very strong opioids.

Now, have a look at those who are on drugs that are known to treat chronic pain, drugs like gabapentin or pregabalin – fairly commonly prescribed nowadays to people with chronic pain. Or being referred to a pain clinic, or to orthopaedics or rheumatology, or referred to a physiotherapist, or to the enhanced practitioner physiotherapist. Only 78 patients, only 0.63 percent. So 15 percent of patients should be having help; if they are on these strong analgesics they’ve had pain for more than 6 months. It needs to be looked at. In the UK the average time it takes to get to a pain clinic is 5 years. By then your pain is truly embedded in you. It’s an unseen problem. Up to 11 percent of the people in the community have been estimated to have chronic pain – some surveys have put it higher. And very small numbers are referred to specialists for pain treatment. There’s 7 Health Boards in Wales, 6 out of 7 of them have a pain clinic, 6 out of 7 have a pain management programme. There’s not enough services out there, which results in delayed access and increased problems. And imagine what it’s like if you’ve got pain and nobody’s going to help you and you go to people to help you who can’t help you because they don’t know how to help you.

Simpson: My name is Owena Simpson and I am one of the senior lecturers for adult nursing and in this session we’re going to do some relaxation therapy, looking at managing chronic pain. I’ve been qualified for 20 years and my background is cardiology and cardiac surgery and prior to coming to the university I was a heart failure specialist nurse.

Evans: As a Cardiology Nurse what can you teach nurses about chronic pain?

Simpson: As adult nurses we are very keen, or go quite often first of all for medication rather than looking for alternative ways of managing people in pain and it’s about helping patients to recognise that there are other ways of managing chronic pain rather than just going straight for the medication and all the side effects that that carries, really.

Evans: And relaxation is important?

Simpson: Relaxation is very important and it’s something we can all do with a bit of practice and something that people can do at home. They don’t need expert people; they can buy different CDs and buy different other aids and find something that works for them.

Evans: And I do and it does.

Simpson: [Laughs] ‘Well there we are. [To students] At the moment it’s probably – maybe it’s the right or wrong time – it’s peak time for assessments and stuff so there’s just been one assignment handed in and now the dissertation is out there a bit, isn’t it. So are you all feeling stressed? Or some of you maybe not. But there are underlying signs that maybe you are? What sorts of things? Crying, headaches and colds all the time and just generally feeling on edge. Not being very nice to other people – so maybe you’re quite snappy to people? Sleep? So that’s your sign of stress. Other people will go to sleep, wake up early and others can’t get to sleep. So we all manage things quite differently. Cold sores and stuff? That’s one of mine. And is it healthy for us to be stressed then? No? Not at all, ever? Do we need to be a little bit stressed just to get up in the morning and to do things? So a little bit of stress is okay and that’s healthy, but the problem is when it’s sustained. Okay, now find a space on the floor and we’ll have a practice of relaxation methods. Some of you will go to sleep and some of you won’t. Are we ready?

Parsons: I’m going to show you this acupuncture needle. Don’t get panicked, okay? This is one that you may use on a very large person around the bottom. These ones are stainless steel disposable needles. Use them once and throw them away – that’s important with acupuncture. Don’t reuse the needles. Most people’s experience of having a needle is having an injection, isn’t it? If you look at the big needle that is being passed around – I don’t know if it’s got over to you yet, but two of those needles would fit inside the lumen, the hole of the green injection needle. They’re designed to slide through tissue and not to cut tissue. What can be strange is finding the acupuncture sensation.

I learnt all this in the 90s and since the 90s we’ve had the development of fMRI (functional magnetic resonance imaging) scans and with fMRI scans we can actually demonstrate that something happens when you put an acupuncture needle into somebody. Where somebody’s brain is activated with pain, the acupuncture stimulation produces a switching off of that pain activation. The surmise is that it’s because your body’s own endogenous opioid pathways are activated – these are the drugs in your body that are similar to morphine. When we give people morphine the same thing happens, but interestingly when you give somebody a placebo the same thing happens. We do know that a placebo does have a powerful effect in chronic pain. These are used in veterinary practice, for pigs and horses and cows. Now this is interesting as it seems to work – so do horses and pigs have the same placebo effect as a human being? My belief based on my audit data is that something is going on with nociceptive pain because in my experience those people that I gave acupuncture to who had typical, nociceptive type pains – headaches, joint pains, knee pains, lower back pains without surgery they had beneficial effects. Those people who had some type of neuropathic element, like post hepatic neuralgia or multiple sclerosis – I couldn’t help them with their pain. So I think that there’s something to do with the opiate pathways. So does anyone want to have a go? It has an achy effect doesn’t it? It’s weird isn’t it?

Evans: Are these the nurses who are going to be sticking needles in me next?

Parsons: It’s one thing to inflict pain onto someone else – but to have it yourself.

Parry: As you’re swapping over I’ll tell you a story about one of the benefits to a patient I had. I was a staff nurse at a community hospital not far from where I lived and I worked there for about 5 years and we used to have a lot of patients with chronic pain problems – there were a lot of patients that came back and forth for respite. We had a patient who actually had broken his spine and he used to come back and forth for respite every 6 weeks. He had extreme pain issues from spasms in his legs and from cramp. Consequently he used to buzz about 30 times a night – he never had a good night’s sleep. He constantly was moving and his pain issues meant that he could never get comfortable. So when I did this course I went back and I said, ‘How do you fancy if we try something new?’ So when he came in I said, ‘Right, let’s get you sorted – we’ll massage your legs and we’ll see what happens.’ So by the time we had finished – he would be laying in the bed like this and he was quite funny because he used to swear like a trooper and for some reason he used to call me Mo. Not sure why, but he would say, ‘Mo – move me!’ So I said, ‘Let’s see if you can manage to sleep’ and do you know what? He did sleep! After 2 weeks of being admitted you saw a real difference in his sleep pattern.

The downside was that I only worked 5 days a week and some of those were day shifts. So when I was on days I used to go back at 9 pm as I only lived down the road, drag up my daughter, who was only about 1 at the time, put her in her child seat and leave her in the office, and go and do his legs. But I had a real ethical issue with this in the end because when he went home for 6 weeks we had real problems in finding somebody to go and do it. But we did find somebody in the end that could go and do it on an intermittent basis because the benefit was obvious. And you just wanted to say to people sometimes that there may not be a huge amount out there written and there might not be a huge amount of proper research evidence but the evidence is there and if you look at the benefit it can have for patients it is just phenomenal. He was a really good example of how it can work.

Evans: That’s Maria Parry, senior lecturer in palliative care at the University of South Wales. Now, I’ll just give you the usual words of caution – that whilst we believe that 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. All editions are available for download from Pain Concern’s website and CD copies can be obtained direct from Pain Concern. All the contact details – should you wish to make a comment about these programmes via our blog, message board, email, Facebook, Twitter or even pen and paper – are at our website: which is painconcern.org.uk. The last words are from Maria Parry.

Parry: From a palliative perspective it’s given me more thoughts of using non-drug-related therapies because of the link between hospice and therapies. They’re widely used in hospice care and acknowledged in hospice care as being useful and I think that sometimes it’s a little bit sad that we don’t acknowledge these things. These other therapies can be so useful to patients. Obviously, in many palliative care centres they’re free, so palliative patients will often be referred to a therapist who will give them a massage once a week. They don’t have to go and pay for it once a week because I don’t think sometimes that they think patients with chronic pain can access all these services and that is also something that we need to consider. It will be nice to see more people, which is why I think this day is so important – that they leave here and remember a lovely massage and ‘Oh yes, it was to do with pain’. And if all they do is put those two things together, then I think we have done something that is useful in relation to patients with pain. Otherwise they will just go out and think, ‘Let’s give them some morphine or co-codamol’ or whatever and it will not necessarily be beneficial to all patients.

Contributors:

Gareth Parsons, Senior Lecturer in Adult Nursing, University of Glamorgan
Maria Parry, Senior Lecturer in Palliative Care, University of Glamorgan
Owena Simpson, Senior Lecturer in Adult Nursing, University of Glamorgan.

How nurses can use relaxation therapy, massage, acupuncture and empathy to help people manage their pain

[For a Welsh language transcript please click here.]

This edition has been funded by the Big Lottery Fund’s Awards for All Programme in Wales.

‘Imagine how it feels if you’re in pain and people won’t help you.’ Like other healthcare professionals, nurses can sometimes struggle to understand the perspective of people living with pain. At a training day for student nurses devoted to chronic pain, Gareth Parsons impresses on his audience the importance of believing the patient and delivers some uncomfortable truths based on his research about the frustrations people with pain often have of healthcare professionals: ‘you are the problem!’

Contributors:

Gareth Parsons, Senior Lecturer in Adult Nursing, University of Glamorgan
Maria Parry, Senior Lecturer in Palliative Care, University of Glamorgan
Owena Simpson, Senior Lecturer in Adult Nursing, University of Glamorgan.

Investigating ancient and futuristic techniques to reduce pain using the power of the mind: from mindfulness to neuro-engineering

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

In this edition of Airing Pain Paul Evans explores the possibility of controlling pain through techniques that focus on the brain and the mind.

Paul meets Aleksandra Vuckovic, a rehabilitation engineer at the Southern General Hospital in Glasgow, who is conducting research into the use of neuro-engineering techniques to control chronic pain in those with injuries to the central nervous system. She explains that neuro-engineering works through patients training themselves to identify the part of their brain that controls their pain and then reducing it using brain waves. One of her patients, Andy Nisbet, shares his own experience of the technique and discusses the potential for future advancements in this method.

Paul also speaks to Vidyamala Burch, founder and director of Manchester-based organisation Breathworks, which offers training for healthcare professionals and individuals in mindfulness-based approaches to chronic pain. She introduces us to the mindfulness technique, which fuses modern medicine with age-old eastern practices, and talks about the advantages of becoming aware of emotional and physical states as they occur. Burch explains that mindfulness allows people to identify the behaviour patterns related to their suffering and to make a conscious choice about that behaviour. This technique impacts on all areas of a person’s life: allowing them to reduce stress, maintain good relationships with those around them and increase their self-esteem.

Issues covered in this programme include: Mindfulness, neuroscience, brain signals, pain perception, nervous system, medical research, mental health, back pain, rehabilitation engineering, alternative therapy, spinal injury and neuro-feedback.

Contributors:

Aleksandra Vuckovic – Rehabilitation Engineer, Southern General Hospital, Glasgow
Andy Nisbet – patient undergoing neuro-engineering
Vidyamala Burch – founder and director of mindfulness organisation Breathworks.

Investigating ancient and futuristic techniques to reduce pain using the power of the mind: from mindfulness to neuro-engineering

To listen to this programme, please click here.

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In this edition of Airing Pain Paul Evans explores the possibility of controlling pain through techniques that focus on the brain and the mind.

Paul also speaks to Vidyamala Burch, founder and director of Manchester-based organisation Breathworks, which offers training for healthcare professionals and individuals in mindfulness-based approaches to chronic pain. She introduces us to the mindfulness technique, which fuses modern medicine with age-old Eastern practices, and talks about the advantages of becoming aware of emotional and physical states as they occur. Burch explains that mindfulness allows people to identify the behaviour patterns related to their suffering and to make a conscious choice about that behaviour. This technique impacts on all areas of a person’s life: allowing them to reduce stress, maintain good relationships with those around them and increase their self-esteem.

Paul Evans: Hello, I’m Paul Evans and welcome to Airing Pain, a programme brought to you by Pain Concern – the UK charity providing information and support for those of us living with pain. This edition is being funded by a grant from the Scottish Government and in it I will be looking at two approaches to pain management that span nearly 3000 years of civilisation.

Vidyamala Burch: Wouldn’t it be amazing if we could combine Western healthcare with these techniques from Eastern religions effectively, but to bring it in in a secular setting.

Evans: Now fast-forward from 600 years BC right up to the frontiers of science.

Aleksandra Vuckovic: I just tell them, ‘Look this is green, these are these three bars. They are either green or red – just try to make them all green.’

Andy Nisbet: The idea of being able to control something using brainwaves was like science fiction to me.

Evans: Well, science fiction or ancient religion, what these two techniques have in common is that they both aim to tap into the power of the mind to help manage pain. Mindfulness has its roots in Buddhist meditation although it’s not inherently religious and is often taught independent of religion. Since the 1970s its principles have been embraced by clinical psychologists for the management of stress, anxiety, depression, eating disorders, addiction and chronic pain. Vidyamala Burch sustained a severe spinal injury when she was 16. She’s founder and director of Breathworks, an organisation which offers training for health professionals and individuals in mindfulness-based approaches for chronic pain and chronic illness. So what is mindfulness?

Burch: The pat answer that’s widely used within research is moment-by-moment non-judgemental awareness but I don’t find that very evocative myself.

Evans: I don’t understand it either.

Burch: Yes, yes. So really it’s about being present, being awake to what you’re experiencing right now physically, mentally and emotionally. And on the basis of being awake and aware you can make choices as to how you respond to that experience.

Evans: I don’t know what you mean by being aware. Of course I’m aware; I’m awake, my eyes are open, I’m talking to you and we’re smiling at each other. I’m aware. Isn’t that what you mean?

Burch: It’s what I mean broadly, but you would be surprised at how unaware we are a lot of the time. We’re in what’s called ‘auto pilot’. We’re going through the day with all our habits about how we do things, and if you’ve got, say, back pain you might have all kinds of habits in terms of the way you respond mentally and emotionally in particular to that back pain. Well, also physically it might be you’ve got back pain and you think, ‘Oh my back hurts I’ll stay in bed’ and you don’t really realise that you can step back from being completely identified with the experience of back pain. Step back and be a person who’s aware they have back pain and that they can choose what they do with that back pain.

That’s obviously on the physical level, but mentally and emotionally mindfulness means that you’re aware of your thoughts and your emotional states as they happen. You’re not completely identified with your thoughts and your emotional states. And you would be surprised at how difficult that is for most of us. If I said to you, ‘What are you thinking?’ you’d probably have to pause and think, ‘Well, I’m not really sure what I’m thinking.’

Evans: My immediate answer would be, ‘Well I’m thinking about what I’m thinking. And what am I thinking? Well, I’m thinking about how to answer this question. Well, I’m not thinking.’

Burch: Yeah, so being aware of one’s thoughts would be: you’re washing up, your back’s hurting and it’s as if you can kind of come to, wake up to being in the middle of that experience – washing up with your back hurting – and you can be aware ‘my back is hurting, I’m holding my breath [exaggerated breath], I can relax my breath, and I’m having thoughts that are very fear based – thoughts about, oh my God how am I going to get through the evening? How am I going to cope with my kids coming home? How am I going to do the housework? I won’t be able to sleep, I’m going to get totally stressed out, my life is ruined’. And those are the thought processes that many of us have on a very unconscious, habitual level and they start to drive our behaviour. So you become a person that becomes more and more wound up, perhaps very irritable, argumentative and so on. And with mindfulness what’s really wonderful about it is you can just think ‘Oh, I’m irritable’. That’s very different from being an irritable person. You’re a person who’s having some irritable thoughts and irritable emotions and this is where the non-judgemental component comes in because you don’t think, ‘I’m irritable. Oh that means I’m a really bad person. I shouldn’t be irritable’. You just think, ‘Oh that’s interesting – I’m irritable’.

Evans: Put it away?

Burch: Put it away, yeah. And ‘How can I respond right now to help that irritation reduce as opposed to just getting more and more irritable in a blind and unaware way?’ I’m sure any of us know what it’s like to be completely caught up with our mental and emotional states, and not have any ability to have perspective and balance around those states.

Evans: Something I do – that I’ve learnt to do – is…I have pain and it changes my personality sometimes, and I can recognise now how its changing my mood and how it’s affecting other people, and I try to visualise myself by stepping outside my body and looking back at myself.

Burch: And what happens when you step outside your body and look back at yourself?

Evans: I see my grumpiness, my mood and I can identify with what the other person is seeing.

Burch: Yeah I would say that the outcome is very, very similar because what you are doing there is, if you like, stopping. Instead of just being Mr Grumpy, you’re stopping, you’re thinking, ‘Ah I’m grumpy. It’s having an effect on me. It’s having an effect on other people.’ You’re recognising you have a choice and you only recognise you have a choice by stopping and identifying what’s going on. When I say wake up, that’s what I mean – coming to from an auto pilot habitual unaware state and being able to think, ‘Here I am, I’m grumpy. Wow, I’m grumpy and I can do something about that.’ So it’s very similar but I would personally be careful of encouraging someone to step outside their body, because the tricky thing when you’ve got pain is it’s in your body. Mindfulness helps us to become whole, so we’re not splitting up from a part of ourselves. Obviously it works for you, which is great but, for some people the idea of stepping outside the body would be a way of splitting off from the pain.

Evans: I actually mean stepping out of my mind from the body.

Burch: Yes, so stepping out of your mind – I think that’s very accurate and sometimes called decentring in fact. Within mindfulness based cognitive therapy they talk about that as decentering which means decoupling ones identity from the mental states that you’re having. So you have just described mindfulness in your own experience.

Evans: Well there you are.

Burch: And do you find it empowering when you think, ‘Oh I’m grumpy. I’ve got a choice here – it’s affecting other people’?

Evans: I find it stops me getting into a spiral of grumpiness and getting into an argument at home.

Burch: Yeah.

Evans: My wife might say to me, ‘Paul that’s unreasonable’ and I can look at myself and say, ‘This is why this is happening’. In the old days I would carry on and we would just spiral into an argument and now I can stop and say, ‘She’s right. I can see it. It’s affecting her and its affecting me.’

Burch: Yeah, so that’s brilliant. Essentially those are the kind of skills we are teaching with mindfulness and again you’ve described very well the non-judgemental aspect, in that you’re able to say, ‘I’m grumpy and its affecting myself and other people’ without saying, ‘I’m a really bad person because I’m grumpy and because I’m a really bad person I’m going to get more grumpy’. I think people with chronic pain and illness…we quite naturally have poor self-esteem or lose our confidence. We think that perhaps we’re useless – perhaps if we have lost our job. Or say if you didn’t have this awareness you are describing and you were arguing with your wife day after day after day – that’s deeply undermining, isn’t it?

Evans: It’s exhausting.

Burch: Yeah, it’s a horrible way to live. But the fact is you can say, ‘Oh yes, I’m grumpy. It’s affecting her, it’s affecting me, and I don’t have to keep doing this’.

Evans: You run Breathworks and you train people to do this?

Burch: Yes. One of the things I quite often say on our courses – and we train health professionals to run our courses and these are very highly educated people, very skilled, with quite complex methodologies and so on. They can find mindfulness very effective, very powerful. But I often say to people this is not rocket science and in a way the shocking thing is that we need training to learn how to do what is actually innate. When we get out of our own way and we begin to let go of all the unhelpful habits that we have learned through a lifetime of experience – we protect ourselves in all sorts of ways. But that’s what I love about mindfulness; in a way it’s innate. We have just learned to come back to something that we recognise and something we take as true and we can do for ourselves.

So we do two different sorts of training; we run courses for people in pain or people with chronic health problems of any sort, as well as people who are suffering from stress – which is more like the busy, stressed person who is still in work, that kind of thing but they are finding work difficult because of stress. Mindfulness can be really helpful. So we work at that end of the spectrum right through to people who are very disabled through their health. This is usually an 8-week programme. So you would go for a 2-hour class and then you’ll have home practice, so we give people CDs of guided mindfulness practices and you’ll do those every day, come back to class, report how you’re getting on. Then we also do training of health professionals. So they can take either the 8-week programme into their clinical setting or they can just learn about mindfulness to bring into their clinical practice in a more informal way.

Evans: I think that’s a good point that this isn’t some airy fairy thing that’s come out of the blue; it is a recognised pain management and stress management technique.

Burch: Definitely and there is more and more research about mindfulness. Really it came into the West in about the 1970s in a clinic in Massachusetts with a chap called Jon Kabat Zinn, who was a highly trained scientist and a meditator. He thought, ‘Wouldn’t it be amazing if we could combine Western healthcare with these proven techniques from Eastern religion effectively, but to bring it in on a secular setting?’ So he started doing that in the 70s. Then it’s been the last 10 years when it’s really started to take off both here in the UK and also in other countries.

There’s mindfulness based cognitive therapy sometimes called ‘MBCT’ particularly for preventing relapse into depression, so there are big clinical trials showing that that’s effective. And there is acceptance and commitment therapy, which includes mindfulness as part of its methodology, and that’s being used more and more within pain management.

So there is more and more research being done – it’s still in its infancy I’d say, but there’s an explosion of interest. It’s sometimes called third wave psychological therapies which are more acceptance-based and that’s the very interesting paradox with mindfulness; that mindfulness won’t make your pain go away. It’s a recognition with chronic pain that we probably can’t make it go away. So how can one live with the unpleasant experience of pain? That’s effectively what it is: an unpleasant sensation in the body. How can you live with that with peace of mind, with high functioning, quality of life, positive emotional states and so on?

I think what’s being recognised is mindfulness and acceptance-based approaches may enable you to do that better than fighting your pain, being caught up in a battle with it, thinking you can get rid of it some way or other, because you are always going to fail.

Evans: That’s Vidyamala Burch. Breathworks offers mindfulness based training in many different forms – for those of us living with chronic pain, and to train health professionals and organisations. Courses can be accessed face to face, through distance learning, online, or online with mentoring. Check out their website which is breathworks-mindfulness.org.uk. That’s breathworks-mindfulness.org.uk.

The small print in every edition of Airing Pain is that whilst Pain Concern believes the opinions and information on Airing Pain are accurate and sound, based on the best judgments available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf. Now, from ancient to modern… The Scottish Centre for Innovation in Spinal Cord Injury brings together a multi-disciplinary team of engineers, scientists and clinicians. One of their research projects is being carried out at the Southern General Hospital in Glasgow where I met, lecturer in rehabilitation engineering at the University of Glasgow, Aleksandra Vuckovic. She was with one of her research subjects, retired teacher Andy Nisbet.

Vuckovic: What we are doing here for rehabilitation engineering, we are applying different techniques to aid recovery of people after spinal cord injury, or it’s applicable also in general for people after injuries to the central nervous system.

Evans: So what sort of injuries are we talking about? How do they affect people?

Vuckovic: After spinal cord injury you have some effects that you see immediately and some things that develop after time. So what you immediately see is complete or partial loss of motor function movement, sensation, control of bladder and bowel, in some cases breathing, body temperature control. And then there are some other things which are called secondary effects that develop some time after injury as a consequence basically, like osteoporosis, muscle weakness… And one of the consequences is this chronic central neuropathic pain.

Evans: Could you explain what that is?

Vuckovic: It’s a chronic pain that typically develops sometime after an injury and it goes by the injury through the somatosensory system. It’s generated in the brain rather than the body but it’s perceived as coming from the body.

Evans: So let me get this right, the injury may have healed but the pain persists.

Vuckovic: Yes.

Evans: Now Andy, you’re one of Alex’s research subjects. Explain your injury to me first.

Nisbet: Six years ago I had a spinal cord injury at T4 level. I don’t remember exactly when after or at what stage of recovery the pain sort of kicked in or when I noticed the pain, but since then it’s been a constant neuropathic pain in my legs and in my left arm. And when I heard Alex was doing the research into it I thought I’d give it a go just to see what came of it.

Vuckovic: This is a study that has been funded by the Medical Research Council. So we are trying to see if people can be trained to voluntarily modulate their brain waves, and if this modulation will result in reduction of pain. So I think it was quite a risky project because first of all we didn’t know if we would be able to find the area in the brain that this is related to this sort of pain. Then we didn’t know if people would be able to train themselves to modulate brain waves and the third thing that we didn’t know was even if they managed to modulate brainwaves would it affect pain at all. So there were three things that had to be fulfilled.

Evans: So how were you training people to modulate their brainwaves?

Vuckovic: I just tell them, ‘Look this is green, these are these three bars. They’re either green or red so just try to make them all green’. I mean, it sounds silly but that is how it works. And this is normally how neuro-feedback works – in general, not only with this one – this is how we train people with neuro-feedback.

Evans: Okay, Andy, how do you make a spot on a computer screen turn green? I mean, is it just thought processes?

Nisbet: Before I started all this, the idea of being able to control something using brainwaves was like science fiction to me. But when we started one of the first things we did was to be able to control the volume of a piece of music, which I found amazing to begin with. Just the fact that I could drop the volume and control it and hold it there. After that I was looking at the screen and making the bars go from red to green. At the beginning it was a kind of random thinking in different areas of your brain, if you like.

Evans: Let me go back on this, this sounds a bit like Doctor Who. Obviously you’re connected to some sort of machine.

Nisbet: Oh yeah, there’s a cap on my head with electrodes attached to it and, as I say, by trying to think of parts of the brain to try to make the bars go from red to green. Then once I had hit on an area that seemed to work quite well I was to try and focus on that all the time and try to make the bars stay green. That worked quite a lot of the time. There were quite a few sessions when it worked really well; the pain would go down. I think the times it didn’t work was not anything to do with the science of it – it was more me not being able to concentrate or having had to rush here or something that didn’t let me be able to focus as well as I could have. To me the focusing part of it was probably similar to something like yoga where you’re trying to take your brain to a different place, if you like. I’ve never done yoga so I don’t know exactly, but it was trying to get to somewhere in your brain where you could almost control the pain and just bring the pain down. And as I say, it did work in many sessions. One of the side effects of it was it lasted for two or three hours after we’d stopped the training. Another side effect was a sensation of heat that came with it, which was really strange to me. My feet almost felt like they were on fire sometimes but the pain had gone and that lasted two or three hours afterwards as well.

Evans: So let me get this straight – when you’re sitting in front of the computer screen and you have the electrodes attached to your head, did you have to consciously think, ‘Pain go away’ and the pain did go away or were you thinking about other things?

Nisbet: I tried to think of somewhere in the brain where there wasn’t any pain. It’s almost a place where you could go in your brain where the pain wouldn’t be there. And the result of that was the bars would go green and the pain would go down. It’s a hard thing to describe. I suppose it’s different for everyone; different individuals concentrate in a different way and have a different technique. That worked for me. The only problem I found was at home it wasn’t so easy to concentrate for any length of time because there are distractions – you think of something different and you’re away, your brain’s gone, it’s off on a different tangent. So it’s hard to use in a practical way but it did work while I was here, there is no doubt about that.

Evans: So it is akin to what many of us are told in pain management programmes is visualisation? I mean, I use visualisation when I’m having my blood pressure done; I take myself to an island, I think green thoughts and that should bring my blood pressure down. That to me is visualisation. Is this the same sort of thing?

Nisbet: No. I tried thinking of being on a beach on a sunny day, all these kinds of things. That didn’t work in this case. It was more a case of finding somewhere to concentrate within the brain, which ignored everything else and just kept the pain at bay. It was a different technique – it wasn’t the sunny beach, lovely day kind of thing.

Evans: Did you develop the technique yourself or were you taught how to do it?

Nisbet: No, Alex at the beginning said nothing. She wouldn’t guide me at all. She said, ‘You have to find what suits you’. So it’s a case of experimenting at the beginning to find somewhere that works and see if the pain reduces. It was interesting at first to see what worked and what didn’t work and the relaxing part of it didn’t seem to work for me. It was more focusing on a place and getting the pain to go away.

Evans: So Alex, what do you tell people at the start of this programme?

Vuckovic: Well I explain what it is all about; then I explain that probably they know the pain is in their brain and we are trying to change basically how the brain works. But I don’t give them many strategies. Maybe sometimes I will say, ‘Try to relax because if you are very nervous nothing will work’. What people see on the screen is actually their brain activity from certain brain regions in real time; so this is a single blinded study in the sense they don’t know which areas I am choosing. And sometimes on purpose I would go to the wrong side and wrong frequency just to check if it’s a placebo or if it’s really that area. So I was amazed – Andy was here only two times when he said at the end of the session, ‘Listen, I think I was regulating these bars with this part of the brain’ and the electrode was right there where he pointed and it was really amazing for me. Okay, this is my study but sometimes I get surprised that he was able to find where he thinks this control comes from.

Evans: I find it absolutely incredible that you can pinpoint a part of your brain that is in use at the moment. I mean I have no idea which part of the brain I’m using. I can read books, possibly written by you Alex, which will tell me which parts of the brain but I couldn’t identify them.

Vuckovic: Yeah, it’s hard. I tried it on myself, the same thing. Of course I don’t feel any relief of pain but I can’t exactly say which part of the brain, but I can feel that I’m in the right state of mind – something like almost floating. I feel I can levitate which I obviously can’t. I don’t know how yoga or relaxation really looks like, but this is my feeling when I’m trying to make the bars green, but from which part of the brain… it’s still amazing for me. This is my research, but it still surprises me.

Evans: So Andy, when you could point to which part of the brain your thought was working, can you explain that to me? How did you feel?

Nisbet: It’s just focusing on one side of the brain or the top of the brain, imagining what is the right side of your brain or the top of your brain and just seeing what happens on screen. It is the feedback part of it that’s important. It’s just a case of focusing. It’s hard to describe imagining a part of your brain. Even in things like having a conversation, you know recalling a conversation and concentrating on the right hand side of the brain for example, just to see what happened on screen. Then gradually working out what was reducing the pain and trying to hold it there.

Evans: So Alex, the feedback side is that Andy himself is training his brain through the feedback from the screen but you know what area is being involved. And that feedback is going through to Andy and he can therefore identify.

Vuckovic: Yes. So I know exactly what I want to achieve and I know in what direction I want to move his brainwaves, so I’m setting a threshold which is slightly under or above his natural brain activity, and I’m encouraging him to change the direction – either increase or decrease different frequency bands.

Evans: It’s all very well Andy saying that he feels better. Do you have any evidence that something is going on?

Vuckovic: Yes, certainly. We record his brain activity during training, before and after each session, and we recorded that over the period of forty sessions. So now we can compare his brain activity from when he came the first time and before his last training. So it’s not training, it’s just his normal brain activity and we can see that his brain activity has shifted in the direction we wanted when we trained him so this is evidence definitely that something is going on.

Evans: Andy, are you optimistic that you can continue with this in the future?

Nisbet: Well I have been since December when I stopped, when the pain peaks. I use the technique and I think it does take the edge off the pain but, as I said, long term it’s difficult to concentrate at home, to sustain that level of effort into the feedback part of it. If a handheld or portable device could be made which you could switch on and do the same things that we’ve been doing in the hospital here, then that would be a big advance I think. Just something practical like that. But the science part of it has been proved to me: controlling the pain by using the brain does work. Another thing I also got out of the research is just being in charge of the pain. Prior to this the pain came and it was there and I couldn’t do much about it. After the research I felt I could control the pain. I was in control and the pain doesn’t have to be in charge of you, you can push the pain back. That was a benefit of it as well, just being in charge of the pain.

Evans: I could envisage an application – an app – for a mobile phone being developed for something like this.

Nisbet: I’ve already suggested it.

Evans: That’s Andy Nisbet along with rehabilitation engineer Aleksandra Vuckovic.

Don’t forget you can still download all the previous editions of Airing Pain from painconcern.org.uk and you can obtain CD copies direct from Pain Concern. If you would like to put a question to our panel of experts or just make a comment about these programmes then please do so via our blog, message board, email, Facebook, Twitter or pen and paper. All the contact details are at Pain Concern’s website.

And finally, whilst a smartphone brain modulation app may be some way over the horizon, don’t forget that mindfulness has been up and running without any glitches for nearly 3000 years…

Burch: You don’t need any equipment, it’s free, you don’t need to be educated; any of us have got access to these incredibly simple techniques that can transform our lives.

Contributors:

Aleksandra Vuckovic – Rehabilitation Engineer, Southern General Hospital, Glasgow
Andy Nisbet – patient undergoing neuro-engineering
Vidyamala Burch – founder and director of mindfulness organisation Breathworks.

A British Pain Society and Dr Foster Intelligence joint Audit has found that safety protocols need to be reviewed in many specialist pain services to ensure that mental health risk assessment and full case reviews of missed diagnoses are routinely performed. The report recommended that specialist training is given to staff so they can better identify and manage those at risk.

The first ever National Pain Audit, carried out by the British Pain Society and Dr Foster Intelligence, was used to measure the availability and activity of NHS specialist centres for the diagnosis and management of complex chronic pain disorders in England and Wales. mini sex doll This four year study was commissioned by the Health Quality Improvement Partnership (HQIP) in September 2009 in response to the Chief Medical Officer’s report in 2008 “Pain: Breaking through the barrier” which expressed concern that the needs of people with chronic pain were being poorly served by the NHS and wider society.

See the full press release here.

In October the new Global Year Against Pain (GYAP) – the International Association for the Study of Pain’s annual yearlong campaign – begins. This year it centres on orofacial pain, which is physical discomfort associated with the mouth and face.

Each year IASP’s campaign attempts to raise awareness of pain as a condition in its own right and to educate health care professionals, government leaders and the public about chronic pain conditions with the aim of improving the care available to patients. The association chose to highlight chronic pain due to its severe effect on many people worldwide and because, despite the fact that many cost-effective pain relief methods are feasible, governments often neglect this area of healthcare. IASP points out that whilst few people die of pain, millions live and die in the midst of it, thus rendering it an important issue.

As with their previous GYAP campaigns, which have targeted headaches, visceral pain and cancer pain among many other types of chronic pain, IASP aims to raise international awareness and improve treatment of orofacial pain. Healthcare professionals and experts on orofacial pain have created information pamphlets on the subject of orofacial pain for IASP and other related organisations. Some of these materials are aimed at doctors and dentists, while others are intended to help patients understand their condition. Throughout the year, IASP and its 90 national chapters will also sponsor various activities, such as meetings, media interviews and publications, to promote education on issues surrounding orofacial pain.

Falling into the gap

IASP has chosen orofacial pain as its focal point for this year’s campaign because many health professionals are not sufficiently trained to recognise and treat this chronic pain problem. This stems from the fact that orofacial pain conditions often fall into the gap between dental and medical expertise, which means that typically neither doctors nor dentists are very familiar with the problem.

Professor Joanna Zakrzewska, who as Honorary Professor of Restorative Dental Sciences at UCL leads research into orofacial pain, explains that many doctors get no training in this area, whilst dentists are poorly taught about the need for a more holistic approach to facial pain. As a result orofacial pain often goes undetected for a long time, being mistaken for tooth ache or other dental problems, and symptoms can become very severe before it is diagnosed. IASP hope that their campaign will raise awareness in doctors, dentists and the public alike, so that orofacial pain can be diagnosed and treated more quickly.

About orofacial pain

Orofacial pain includes such conditions as trigeminal neuralgia, temporomandibular disorders (affecting the muscles and joints of the jaw), burning mouth syndrome, persistent idiopathic facial pain and trigeminal neuropathic pain. These conditions are caused by diseases or disorder of regional structures, by dysfunction of the nervous system, or through referral from distant sources in their causes. The disorders vary in their symptoms and treatment, but all can prove challenging to diagnose. One diagnostic approach categorizes orofacial pain into four groups based on the underlying pain mechanisms—namely, musculoskeletal, neuropathic, neurovascular, and psychogenic pain. Orofacial pain is common, with around a quarter of the population of the UK affected by one of its manifestations. It is more common in women than men.

Orofacial pain conditions can cause extreme discomfort; trigeminal neuralgia has been described as one of the most excruciating pains known to man. Patients have likened the sensation to lightening shooting through their face or an electric shock that is triggered by the lightest touch. Furthermore, there are social and psychological issues associated with orofacial pain, with over 70% of people affected experiencing psychological distress and many feeling socially isolated. Loss of sleep and pain elsewhere in the body are also linked to orofacial pain.

With the Global Year Against Orofacial Pain IASP is shining a powerful spotlight on the topic in order to remove the current barriers to fast and effective treatment.

Busting some myths about shingles and post-herpetic neuralgia, and the dos and don’ts of managing migraines

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Migraine is not ‘just a headache’ – it’s a disabling condition that can cause major disruption to work and personal life. So says David Watson, a GP who specialises in treating patients with chronic headaches. He explains that the ‘migraine brain’ is extra sensitive to changes in the environment, how small changes in lifestyle can help people minimise episodes and how to avoid the pitfall of medication overuse. Dr Watson also gives helpful advice on how patients with migraine can best prepare for a visit to their GP.

Post-herpetic neuralgia is another frequently misunderstood condition with myths about its contagiousness and relationship to chickenpox and shingles causing confusion. Marian Nicholson of the Shingles Support Society clears up these misunderstandings and emphasises the importance of preventative treatments. We also hear about a new vaccine which should help to protect older people who are most at risk of developing post-herpetic neuralgia after shingles.

Issues covered in this programme include: Post-herpetic neuralgia, migraine, headaches, hypersensitivity, lifestyle, misconceptions, preventative treatment, vaccine, shingles, elderly people, triggers, burning sensation, chickenpox virus, drugs, medication, painkillers, antiviral medicine, nerve pain, tricyclic antidepressant and antiepileptics.

Paul Evans: I’m Paul Evans and welcome to Airing Pain, a programme brought to you by Pain Concern, the UK charity providing information and support for those of us living with pain. This edition has been funded by a grant from The Scottish Government.

David Watson: If you look at population studies of people with chronic headache, anything up to 20–30% of patients are overusing painkillers and if you look at specific clinic based studies of patients who have been referred by a GP to a specialist, anything up to 70% of those patients overuse medication.

Marion Nicholson: The nerve that the virus used to travel to the skin surface by, has been damaged by the virus travelling along the nerve and it carries on sending these pain messages to your brain and that’s what people talk about when they say they’ve got shingles months later, it’s not shingles – it’s now called post-herpetic neuralgia.

Evans: In this edition of Airing Pain we’re looking at two conditions that can have a major bearing on how we live our lives. One deriving from a virus that nearly all of us have carried since childhood and the other is headache. David Watson is a GP in Aberdeen with a longstanding interest in headache as well as his general practice; he jointly runs a headache clinic in the Department of Neurology, Aberdeen Royal Infirmary. He was also involved in developing headache guidelines and standards at a national level in Scotland. Now we all get headaches, so shouldn’t we just put up with them?

Watson: Tension headaches are probably the commonest headaches that anyone can get but tension headaches are non-disabling headaches, if you’ve had a bad day at work or you’re a bit tired and you should probably go out and get some fresh air or go for a walk, maybe take a paracetamol, but migraine on the other hand is a disabling headache. It probably affects up to 6 or 7 million people in the UK and migraine by definition is a headache that is worse with activity. If you say to someone who gets migraine ‘what do you do when you have a migraine?’ very often they feel they need to stop activities. Interestingly, the World Health Organisation would put migraine in its top 20 disabling conditions and in fact, in women, in its top 12 disabling conditions. If you can imagine that migraines are moderate to severe headaches that are made worse by movement, some people feel squeamish or sick with it and other people find that they are very sensitive to the room, whether it be noise or light or smells, and if you get one of those very bad migraine episodes then probably you’re going to be sitting in a dark room or even lying down, and because of that you are not able to do activities. So I think we need to take migraine very seriously cause it’s probably one of the commonest causes, for example, of short-term sickness absences in the UK and they reckon it probably costs a couple of billion pounds a year in lost revenues to the economy, and for the sufferer it’s very difficult. A lot of people get migraine very often and live in fear of their next migraine. It’s a bit like the weather and weddings: it’s not in any way planned and people live in fear and dread about having to cancel activities like meeting a friend, going to the cinema, going out with their partner. Interestingly, if you speak to the partners of people with migraine, they’ve had situations where it’s them that have gone to the party and partners have been left at home, for example.

Evans: I can vouch for that!

Watson: I have been in that situation as well, my wife, my mother-in-law and my daughter all get migraine and I’m very lucky, I probably only get about four migraines a year and it’s my way of the body just saying slow down and you’ve got to get some proper rest. I remember before I got mine, meeting my wife in Amsterdam and it was all commotion and song, a lost weekend in a hotel in Amsterdam with my poor wife lying there with her migraine and I was thinking ‘do I sit in the hotel room all weekend with her or do I go out and see all the sites of Amsterdam’ [laughs] so yes it is incredibly disabling, not just for the patient, but for family members as well.

Evans: We’re laughing about it now but it really is a serious problem for people.

Watson: I think the single biggest difficulty for people with migraine is people who don’t get migraine calling it just a headache. I think for someone who gets disabling migraine, you know for example, they phone in to the boss in the morning and say ‘I’m very sorry I have a bad migraine today’ there is a bit of ‘what do you mean you can’t come in! It’s only a headache!’ and this poor person is lying in a dark room with a sick bucket by their bed, daring not to move because the pain is so severe. So, yes, I laugh about being in that situation, a headache doctor with my wife having migraine, but it is incredibly disabling.

Evans: You say you get a couple of migraines a year, do you know what causes those?

Watson: We don’t know what causes migraine. So when I see patients and they say ‘can I have a cure’ and I have to explain that we don’t know the cause so we can’t give a cure. But what we know that the migraine brain is sensitive to the environment whether it is to our internal environment or external environment. It’s almost like there’s a switch in the bottom of the brain and when it gets switched on you get this wave of energy going across the brain setting off the chemical changes that then result in all the migraine symptoms. In a sense, how often you get your migraine is set by how sensitive the genes you have inherited have set that switch. So I’m lucky that it takes quite a lot to set me over that threshold and the migraine brain likes regularity, you know, it likes regular meals, regular sleep, regular exercise. It’s much more common in ladies because of hormonal changes, that’s why three times more ladies get migraines. So that’s a sort of internal environment. Then there’s the external environment, some patients will have specific foods or smells. A colleague, for example, for who a particular perfume will set him off – he remembers being in a lift to a meeting once and getting a migraine after standing close to a couple of ladies who had this particular perfume on that set him off. Some migraine sufferers, for example, can predict weather changes, they feel that atmospheric pressure change. I know in my case it’s burning the candle at both ends, trying to do too much, maybe rushing around at work and not drinking enough fluids during the day, missing lunch because I’ve had to go to a meeting or whatever it might be, and it’s almost like the brains getting wound up and wound up and wound up and then you get that release of pain. I’m probably quite lucky that my headaches aren’t extremely painful but I get all the non-recognised symptoms, I’m a bit clumsy, my speech isn’t quite as clear, my brain goes into this like fog and I know that I probably need two or three nights of proper sleep and eating at the right time, drinking plenty of fluids. So we know for patients that a combination of these factors will bring on a migraine for them. We see a lot of patients at the clinic who have what we call chronic migraine. Now chronic in headache terms simply means headache for 15 or more days a month. So, most patients with migraine will get one or two migraines a month that might last a day or two days, fairly disabling for that patient. But there are patients that get headaches a lot of the time, certainly more than half the month and if eight of those days are migraines then we call that chronic migraine. It’s inevitable that most of the people I see at the clinic with chronic migraine are ladies in their late 30s, into their 40s and they are very likely starting to become slightly perimenopausal so hormonal levels are just starting to go up and down. But they tend to be busy people, they’re working full time, they’ve got children, they’re running a household, they are part of the parents association, they are helping out with Scouts on the weekends or at the church or whatever, and very often not getting proper regular sleep. They’re not getting any time to themselves and really in a sense their brain is never getting a chance to switch off. I very often say to these ladies ‘well we can try you with some medicine or a tablet but I’m going to give you some homework and that homework is that I want you to find a time each day that is your time to try and switch the brain off’. Now I can’t tell you how to switch your brain off, for some people it may be to shut the bathroom door, a hot bath and a book, for others it might be going out for a walk, but it’s important for migraine sufferers to give their brain some down time just to give it this kind of unwind time to relax it.

Evans: And this isn’t a self-inflicted thing, it’s a genuine illness, it is not something that you’re putting on yourself.

Watson: Absolutely not! People with migraine have the genes that make them more sensitive to what happens either inside the body or outside the body. Someone who doesn’t have migraine will do the same and not get headaches. Unfortunately for the patient who gets migraine the brain needs that kind of switch off time. And I think it’s for people to try and recognise that in themselves. I’ve seen patients that have come back to me and have said they have managed to get regular sleep and [are] making sure they don’t miss breakfast and are better at drinking fluids and [they] do as [I] told [them] and [they] get migraine now and then but [they are] not getting so many. I saw a lady in the clinic the other day who works in the bakery at Tesco, I said ‘it’s a hot place, do you drink any fluid?’ ‘Oh no, I don’t drink at all when I’m at work’ and I said ‘what about at lunch?’ ‘Oh well I cut my lunch short and get away early so I can pick the children up from school’ and when I saw her again she was much, much better and probably the medicine helped a bit, but she said ‘I actually go out of Tesco and go for a 20 minute walk at lunch time and I make sure I’m drinking plenty’ and it’s nice to think that a small change for some people can make a difference.

Evans: It’s interesting that what to many people sounds like common sense: that if you do work through your lunch, if you don’t drink all day, well you would think that it would have an effect on you, but to be told that by a doctor then it’s OK.

Watson: I think sometimes, with my GP hat on, a lot of what I do sometimes is to try and put things into perspective for people or even kind of normalise things a little bit. Don’t get me wrong, for a lot of people, looking at lifestyle isn’t the whole answer for migraine and they‘ve got this condition and they need medication as well. But I think sometimes people kind of get onto the hamster wheel a little bit and kind of need permission to get off that hamster wheel now and then.

Evans: You mentioned earlier that most patient’s experiences with dealing with their headaches is by going to the pharmacist and getting paracetamol and whatever else is on the shelf, is this a good practice?

Watson: Patients who get a bad headache or a migraine every now and then, I think it’s absolutely fine to self-manage, in fact a lot of the guidelines say that taking aspirin or ibuprofen is as good as the more specific migraine tablets. The difficulty is for patients who start to get more frequent migraine and we know that if you start having to take painkillers on a more regular basis, for some patients, painkillers will actually cause headache and we would probably say that patients would need to restrict painkillers to no more than two days a week, and unfortunately medicines with codeine in them tend to be the biggest culprits for headache caused by painkillers and that’s in things like Solpadeine and Migraleve and Co-codamal and Co-dydramol, you know very common painkillers.

Evans: So you’re saying that overuse of these can actually cause the headaches?

Watson: Absolutely! Absolutely! So if you look at people who transform from an episodic migraine, now and then, to this chronic headache over half the month, a large factor in that for some patients is the overuse of painkillers. Now, the difficulty is that when you stop the painkillers not everyone gets better, but certainly in our clinic in Aberdeen probably in 10 patients overusing painkillers and you stop those painkillers, within about 4 weeks probably 6 out of 10 patients will be a lot better, not cured of migraine, they would still get their headache but it would be back to every now and then. But the four patients, where stopping the medicines didn’t help in terms of headache frequency, what we do know is that the prevented treatments will work better if the overused medicine is not there. And if you look at population studies of people with chronic headache, anything up to 20 or 30% of patients are overusing painkillers and if you look at specific clinic based studies of patients who have been referred by GP to a specialist, anything up to 70% of those patients overuse medication. It’s a perfectly understandable thing, if you’ve got pain you take a painkiller and you have patients who say ‘well I have to take something when I wake up to get me through the day’. I think it’s difficult for these people because when you stop a painkiller the headache will get worse for the first week to 10 days whilst the medicine’s coming out of the system and that’s why it’s really important to have a partnership with the patient.

Evans: What would your advice be to somebody who is suffering headaches? How should they talk to a health professional?

Watson: That’s a good question. I think a lot of patients find it difficult to express the disability they get with especially migraine and they sometimes find it difficult to express the other symptoms that they get. It never surprises me that headache doctors have a smile when patients come to see us and they’ve been referred, for example, with a headache that they’ve had for 2–3 months. I will say to them that ‘we need to talk about that headache’ but I need to know about other headaches you’ve had in the past and they say ‘Oh, I just get normal headaches’ and we smile because most peoples’ normal headaches are migraine and I say ‘can you explain what you mean by normal headache?’ they say ‘Oh well, you know, I get this headache and feel quite sick and have to go and lie down’ you then might explore that more with them and ladies will say ‘Oh yes, it’s a headache I got with my period’ and when you say to the patient ‘well that’s actually migraine’ and they say ‘Oh, no one’s ever told me that I have migraine.’ So patients may naturally play symptoms down and I think that’s difficult for patients to try to understand, but you can’t expect patients to know how to make a diagnosis. What will be useful for patients is to think of all the ways that headache affects them because what I say to GPs is that if you’ve got someone that comes in with a headache that’s episodic, in other words they get a headache for a day or two and then they’re better for a couple of weeks and then they get a headache for a day or two and that headache is associated with some disability so the patients maybe want to stop activities and they maybe feel a bit sick and they don’t like light, then those are kind of the trigger to say this is going to be migraine.

Most people try and keep going so they don’t think of themselves as being disabled and again when I teach the medical students I say, if you say to a mum with three kids under five and she gets migraine ‘Do you go and lie down?’ She’s going to look at you as if to say ‘Well of course I don’t go and lie down’ or someone who’s got a difficult job and the boss is a bit difficult and you say ‘Do you go home when you get a migraine?’ They say ‘Well no, I just keep going’. So you have to phrase the question for example, ‘If your husband is home on the weekend and you got a migraine what would you do?’ ‘Oh, I’ll go and lie down’. So I think what’s good for patients is before they see a doctor about headache is to think about how that headache impacts on their life and if they think that this headache is stopping [them] doing things or its preventing [them] doing things properly, in other words, [they] keep going but it’s a struggle. Then it [can be difficult] to try and talk to the GP about that because what very often doctors focus on, if they don’t really understand migraine, is where is the pain, which bit of your head and is it sharp pain or a throbbing pain or a dull pain and so patients get sidetracked describing the pain. Whereas migraine can be any kind of headache, anywhere on the head and the key is really more to what the other symptoms are. We have developed, in Aberdeen, a questionnaire that goes in a booklet out to patients just to say to patients ‘These are the sort of questions that a doctor’s going to ask you, just have a wee think before you come to the clinic about how the headache affects you’.

Thinking about it, if you come to the GP for example, and most patients with migraine will never see a specialist, it will probably be only 1 in 100 patients with migraine will ever get referred to see a specialist. So if you’re going to a doctor because you are getting bad headaches, don’t go in and talk about your child’s chickenpox or your gran’s dementia or problems you get with your flat feet or whatever, go in and make a headache consultation so the GP has time just to talk about headache and go in thinking about how does this headache affect me and how does it impact on my life and in that way you’re kind of prompting the doctor to ask you the right questions.

Evans: I’ll just remind you that whilst we at Pain Concern believe the information and the opinions on Airing Pain are accurate and sound based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and, therefore, the appropriate action to take on your behalf. Now about 1 in 5 of us will have shingles in our life, most likely after we’ve past our 50^th birthday. Marion Nicholson is the director of the Shingles Support Society.

Nicholson: Shingles is the name we give to a repeat appearance of the chickenpox virus. So what happens is everyone gets chickenpox as a kid or nearly everyone in this country, it’s about 95%. Then at some point in the future, chickenpox virus can reappear, instead of coming out over your whole body what it does this time is just come out in a line perhaps around your ribs or side of your face, it’s always one side of the body only and it usually starts with a nasty pain which often the patient doesn’t recognise, that’s one of the tricky things. They will say I thought I had pulled a muscle or I thought I was allergic to something I used or I thought I had been bitten by an insect. And then after that pain, usually after a couple of days, and that’s when it gets diagnosed. When the doctor can actually see the spots, because before then the doctor will probably agree that, yes, you have probably pulled a muscle. That’s a bother because the treatment for shingles needs to be started within 3 days, there’s a 72-hour window. Because, although the treatment could be given after that time, it really won’t have much effect. Shingles needs to be treated early with the antiviral drugs.

Evans: Well I’ve known people who’ve had shingles, my own grandmother included, who you say the treatment has to be started within the 3 days, she must have had it for months and months and months.

Nicholson: Right now you see that is no longer shingles. Shingles really is the name that we give to the blisters that happen and clear up usually within 2 weeks, in the case of my nephew who’s 13 they cleared up in 3 days. Now what can happen in older people particularly, or in some very unlucky younger ones, is that after the shingles blisters go away the nerve that the virus used to travel to the skin surface by has been damaged by the virus travelling along the nerve and it carries on sending these pain messages to your brain, and that’s what people talk about when they say they’ve got shingles months later. It’s not shingles, it’s now called post-herpetic neuralgia. Neuralgia meaning, it’s a pain created in the nerve. I often tell people that it’s a sort of ghost pain – in that, although the arm or the rib feels painful, there is actually nothing wrong with that arm or that leg. It really is that the nerve is sending a false message to the brain just as people who have had an amputated hand report that they still feel pain in that hand although that hand is no longer there. So it’s the nerve itself which is creating this pain message and it’s very tricky to treat.

Evans: How do you stop the shingles becoming post-herpetic pain?

Nicholson: We don’t have any way of stopping shingles becoming post-herpetic neuralgia. Although one expert pain doctor does suggest that anyone who is 50 or older who develops shingles, should immediately be started on one of the two main drugs that are used to control this kind of pain. One is a tri-cyclic antidepressant, the other is an antiepileptic drug, originally, both of these drugs are used now, mainly to treat this kind of pain, neuralgia. His suggestion is that if you’re 50 when you develop shingles, the rash, you should immediately be started on this tri-cyclic antidepressant because these two drugs, they are really interesting, you know, they are not actually pain relief in that they don’t actually stop pain right away, the way aspirin or morphine would, what they do is slowly over time they build up a pain block, so day after day that you’re taking these two drugs another brick is added to the wall of blockage and eventually after 3 weeks, or in some people 6 weeks, and with the dose increasing regularly, every 10 days you would need to put the dose up again, your pain wall is high enough that the pain message no longer reaches the brain and once that’s in place you can start reducing the dosage of the tri-cyclic antidepressant or the anti-epileptic drug and the pain block will hold even though you’re now reducing the dosage.

Evans: You’ve just mentioned the illness, chickenpox; many people won’t associate the condition, shingles, with chickenpox.

Nicholson: That’s right and one of the main concerns is when they phone the helpline of the Shingles Support Society is ‘how have I caught this or who can I go visit, who can catch what from me?’ So, you start off by catching chickenpox as a kid, it remains in your neural ganglions those are nerve junction boxes beside every spinal vertebrae in your body and then when it reactivates it is called shingles. Now you can only have shingles if you’ve had chickenpox, nobody can catch shingles, it is always something that just develops because you have had chickenpox in the past, and shingles is only transmitted to another person if they actually rub against the shingle sores. So a person with shingles, if they feel well enough, can continue normal social or work life, they don’t have to stay at home. However, if someone who has never had chickenpox rubs against the shingle sores then they would catch chickenpox from the shingles outbreak. You have to think of chickenpox as the first thing and shingles is just the repeat outbreak. Interestingly, chickenpox itself is easily transmitted, you only have to be in a room with somebody with chicken pox for 15 minutes and you are expected to have caught chickenpox. So chickenpox is in the air whereas shingles is not in the air, it is just transmitted by touch to somebody who has never had chickenpox.

Evans: For those who have had chickenpox, which is probably most of us – is there any way of not having shingles?

Nicholson: Shingles gets triggered by all sorts of different things, sometimes nothing at all except getting older, but often it’s after an operation or a fall. There is now a vaccine to prevent shingles from developing and it will be very cost effective to vaccinate people because although not everyone develops post-herpetic neuralgia following shingles, basically, the older you are the more likely it is that that is going to happen to you and if you’re unlucky and that shingles pain drags on, and it does for about 1 in 5, it can really change your manner of living. You might need Social Service support to do your shopping or one lady told me that she didn’t dare drive anymore because the shingles pain for her was a stabbing sensation that hit her across her forehead from time to time. She said ‘if I was driving a car at that time, I would be unsafe on the road so I just don’t dare drive anymore’. Another lady was telling me that her husband couldn’t bear wearing clothes because the shingles pain, in his case, was a super sensitivity of the area around his left ribs and just the brushing of his shirt across his ribs felt to be such an excruciating pain that he just didn’t want to wear a shirt.

Evans: I remember my grandmother, her face looked as if she had been burnt in a fire, she could not touch it.

Nicholson: Interesting that you say that it looked like it because quite often the problem is that it feels like that to the patient, a burning sensation is another one of the range of sensations. You see because the nerve has been damaged, the pain can be felt in a myriad of different ways. Any message that the nerve has at any time sent is what your shingles pain can be. So it could be a sensation of burning, itching, intolerable itching that keeps people awake at night, stabbing, aching, like a bruised sensation, and if people have had it like your Nan on their face, they may have unnecessary dental work done because they think the problem lies in their teeth, that deep ache. So all those sorts of different sensations can be a result of the damage caused by the virus in the nerve. Which is why, quite frankly, I am having the vaccination myself (laughs).

Evans: That was Marion Nicholson, Director of the Shingles Support Society, and their website is shinglessupport.org. Don’t forget that you can download all the previous editions of Airing Pain or obtain CD copies direct from Pain Concern. If you would like to put a question to Pain Concern’s panel of experts or just make a comment about these programmes then please do so via our blog, message board, email, Facebook, Twitter or pen and paper. All the contact details are on our website which is painconcern.org.uk. Now NHS information on that shingles vaccine says that it is licensed for use in people aged 50 and over. Although it can be used off label for people younger if a doctor feels it is suitable and if a GP decides vaccination is appropriate it can be prescribed on the NHS. In other cases the vaccine will need to be given at a private clinic. But from September 2013 people aged 70 will routinely be offered the shingles vaccine on the NHS with a catch-up programme for people aged 71–79.

Here is a final thought on shingles, I’ve had three children and I have got three grandchildren now and I seem to remember this chickenpox from my children isn’t going to be pleasant but let’s get it over with, let’s go to a chickenpox party or something. Now you seem to be saying that perhaps as a parent we should’ve avoided that.

Nicholson: On the contrary chickenpox caught at a young age, usually early childhood, primary school age, is as you say a very mild disease. In some countries they do vaccinate their children against chickenpox, but it’s done for commercial reasons rather than health reasons in that when the child has chickenpox the parents have to take a week off work. So in some countries it is actually done for that reason, and the interesting thing is, for the adult, the more times you have nursed someone with chickenpox the less likely you are to have shingles because each time you meet the chickenpox virus you’re actually developing more anti-bodies, you’re giving yourself a booster against having shingles.

Contributors:

David Watson, General Practitioner, Aberdeen and Chair of the SIGN Guideline on Headache
Marian Nicholson, Director of the Shingles Support Society.

Busting some myths about shingles and post-herpetic neuralgia, and the dos and don’ts of managing migraines

This programme was funded by the Scottish Government.

Migraine is not ‘just a headache’ – it’s a disabling condition that can cause major disruption to work and personal life. So says David Watson, a GP who specialises in treating patients with chronic headaches. He explains that the ‘migraine brain’ is extra sensitive to changes in the environment, how small changes to lifestyle can help people to minimise episodes and how to avoid the pitfall of medication overuse. Dr Watson also gives helpful advice on how patients with migraine can best prepare for a visit to their GP.

Contributors:

David Watson, General Practitioner, Aberdeen and Chair of the SIGN Guideline on Headache
Marian Nicholson, Director of the Shingles Support Society.

Responses are still being invited for the Scottish Government’s consultation on the provision of specialist residential chronic pain services in Scotland. The closing date for responding is Sunday 27 October, and the consultation documents can be found on the Scottish Government website.

The ALLIANCE (Health and Social Care Alliance Scotland) and Scottish Government are hosting a series of local networking meetings for people who experience chronic pain and other stakeholders throughout October to discuss the Scottish Government’s plans for a specialist intensive chronic pain management service.

The Scottish Government is currently consulting on plans for the future provision of such a service in Scotland. At present, people who live in Scotland, but who require a specialist intensive chronic pain service, travel to Bath in South West England to receive a programme of care from the Royal Hospital for Rheumatic Diseases. In August, the Health and Social Care Alliance Scotland (the ALLIANCE) heard from 50 people at an event on chronic pain in Glasgow, but we would like to hear more views on the development of this service from more of our members, people who experience chronic pain, carers and others who have an interest in this area.

To support this, the ALLIANCE and Scottish Government are hosting meetings on:

21st October – 12 noon – 3pm in the Studio at The Spectrum Centre in Inverness. Lunch included at 12-12.30pm
23rd October – 11am – 2pm in the Annandale Suite at the Cairndale Hotel in Dumfries. Lunch included at 1.30pm
24th October – 11am in Room 3/4 at the ground floor Studio, Rothes Halls, Kingdom Centre in Glenrothes.

To register for any of these events please contact event@alliance-scotland.org.uk or telephone 0141 404 0231.

Lloydspharmacy is looking into how listening to music can help with pain management and would like to know what you think.

Have you tried listening to music to relax or distract yourself from chronic pain? Do you think it can help you to manage your pain? Lloydspharmacy would love to hear your views. Taking part in the survey entitles you to 10% off their online sales, plus two participants will win £50 in Lloydspharmacy vouchers each.

UPDATE 28/10/2013: Initial findings from this survey are now available here.

We are currently recruiting for our Listeners and Readers Panel. Would you be interested in helping us to make our information as helpful and informative as possible?

As part of the Panel you will listen to audio files, give us feedback on interviews, and read occasional information leaflets and articles. You will help us to ensure that the information produced is accessible to our service users by highlighting any terms you find unclear and commenting on the helpfulness of the information. We always strive to provide the best service, and your feedback can help us make sure that we do so.

If you’re interested in applying, please email hr@painconcern.org.uk with a bit of information about yourself and how you would be willing to help.

If you’re considering volunteering, come and meet us in Edinburgh this Wednesday at the Volunteer Recruitment Fair. Volunteering is a great opportunity to build skills, experience and contacts. We could use your help in our helpline, media department, policy department, audio transcription, fundraising, and the Listeners and Readers Panel.

Find us at the fair to learn more about these opportunities.

More information on volunteering in Edinburgh is available at the Volunteer Centre’s website.

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