Pain Concern

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

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

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

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

Contributors:

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

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

To listen to this programme, please click here.

Prefer a PDF?Download

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

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

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

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

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

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

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

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

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

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

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

Evans: That was Dr Steve Gilbert.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Evans: Dr William Notcutt. And at this point I will just remind you of our usual words of caution that whilst we believe the information and opinions on Airing Pain are accurate and sound, based on the best judgements available, you should always consult your health professional on any matter related to your health and well-being. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.

This is Airing Pain with me, Paul Evans.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I will leave you with Nicky Jones:

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

Jones: It’s fentanyl, a strong opioid.

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

Jones: Yes.

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

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

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

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

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

Jones: Thank you.

Contributors:

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

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

Contributors:

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

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

To listen to this programme, please click here.

Prefer a PDF?Download

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

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

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

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

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

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

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

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

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

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

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

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

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

[Laughter]

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

Speaker 2: The seals?

Speaker 1: Betsan! Said she wants some…

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

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

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

Speaker 1: And I crocheted…

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

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

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

[Laughter]

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

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

Kim: It’s not bad crochet, either.

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

Speaker 5: So, they’re for the seals.

Speaker 6: A floppy seal and a wet seal.

[Indistinct conversation]

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

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

Speaker 1: I think so.

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

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

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

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

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

Evans: So what are you knitting now?

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

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

[Laughter, indistinguishable]

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

Evans: What do you mean by visuospatial movement?

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

Evans: Show me later.

Corkhill: Yes. [Laughter]

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

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

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

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

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

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

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

Pauline: …she’s a bit special.

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

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

Speaker 2: Pauline!

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

Speaker 2: Destroying the woman’s good name.

[Laughter and chat]

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

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

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

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

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

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

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

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

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

Corkhill: Round, yep, pull that stitch through…

Evans: Catch it underneath…

Corkhill: Catch it underneath, and off.

Evans: And off.

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

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

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

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

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

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

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

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

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

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

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

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

Evans: Front to back.

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

Evans: There’s a great scarf coming here.

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

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

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

Paul: Did you knit before coming to this group?

Woman: No.

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

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

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

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

Evans: Front.. front to back.

Corkhill: Front to back. [yes]

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

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

Evans: Oh! Front to back!

Corkhill: That’s it! Yes.

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

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

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

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

Evans: Yes.

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

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

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

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

Speaker 1: Yeah.

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

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

Evans: Can anybody join Stitchlinks?

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

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

Evans: What sort of people find knitting beneficial?

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

Evans: What are you knitting there?

Sarah: [Whispered] Go away.

Evans: Go away?

Speaker 1: Sarah’s shy.

[both laugh]

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

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

[Paul laughs]

Speaker 2: I’m driver and tea.

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

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

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

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

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

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

[Laughs]

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

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

[Laughter]

Speaker 2: Aiming high yeah?

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

Contributors:

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

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

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

Contributors:

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

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

To listen to this programme, please click here.

Prefer a PDF?Download

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Evans: And what do they do with you?

Anne: ‘Mindfulness’, it’s called.

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

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

Jenny: Yeah, I think it’s all of us.

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

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

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

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

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

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

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

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

Evans: How far into the programme are you?

Sandra: Midway, beginning of the third week.

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

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

Evans: Why did they have to convince you?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Evans: Parents aren’t just observers, then?

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

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

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

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

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

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

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

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

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

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

Connel: Absolutely.

Evans: So how do you change a sleep pattern?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Anne: Oh, absolutely.

Sandra: Yeah, absolutely.

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

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

Anne, Sandra: Yeah.

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

Contributors:

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

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

Contributors:

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

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

To listen to this programme, please click h ere.

Prefer a PDF?Download

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Evans: And where is your pain?

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

Nur: Yeah.

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

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

Nur: Ready to switch on?

Richard: Yep.

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

Richard: Yeah, got one there.

Nur: Happy with that? That’s okay?

Richard: Yeah.

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

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

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

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

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

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

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

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

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

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

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

Richard: That’s it, really.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Patient 2: How it started?

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

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

Nur: Hmm. How long ago was this?

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

Nur: You’ve had surgery on your back?

Patient 2: Yeah, I did a spinal fusion.

Nur: How long ago was that?

Patient 2: That was four years ago.

Nur: Right.

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

Nur: No. You still had back pain.

Patient 2: Yeah.

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

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

Nur: Acupuncture?

Patient 2: Acupuncture, yeah.

Nur: That didn’t help either?

Patient 2: Nothing.

Nur: Nothing’s done.

Patient 2: Nothing at all.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Evans: My thanks to Kath Nur’s patient for being so open about her pain condition. Sitting in on the consultations and hearing how relationships are being built between her and the patients reinforces the words of caution we give in every edition of Airing Pain. And that is that whilst we believe the information and opinions are accurate and sound and based on the best judgments available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and, therefore, the appropriate action to take on your behalf.

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

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

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

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

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

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

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

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

Patient 2: No.

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

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

Patient 2: None at all.

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

Patient 2: Yeah, it is.

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

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

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

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

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

Patient 2: Yes, there.

Nur: Is it irritating, do you think?

Patient 2: No, not really.

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

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

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

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

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

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

Contributors:

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

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

Contributors:

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

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

To listen to this programme, please click here.

Prefer a PDF?Download

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

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

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

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

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

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

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

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

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

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

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

Evans: Chris Maine of Keele University.

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

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

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

Evans: Elaine Heaver.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But before we continue please bear in mind that whilst we believe the information and opinions on Airing Pain are accurate, based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Evans: Paul Watson.

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

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

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

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

Contributors:

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

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

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

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

Contributors:

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

Cookie	Duration	Description
__cfduid	1 month	The cookie is used by cdn services like CloudFare to identify individual clients behind a shared IP address and apply security settings on a per-client basis. It does not correspond to any user ID in the web application and does not store any personally identifiable information.
_GRECAPTCHA	5 months 27 days	This cookie is set by Google. In addition to certain standard Google cookies, reCAPTCHA sets a necessary cookie (_GRECAPTCHA) when executed for the purpose of providing its risk analysis.
cookielawinfo-checbox-analytics	11 months	This cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Analytics".
cookielawinfo-checbox-functional	11 months	The cookie is set by GDPR cookie consent to record the user consent for the cookies in the category "Functional".
cookielawinfo-checbox-others	11 months	This cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Other.
cookielawinfo-checkbox-advertisement	1 year	The cookie is set by GDPR cookie consent to record the user consent for the cookies in the category "Advertisement".
cookielawinfo-checkbox-necessary	11 months	This cookie is set by GDPR Cookie Consent plugin. The cookies is used to store the user consent for the cookies in the category "Necessary".
cookielawinfo-checkbox-performance	11 months	This cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Performance".
viewed_cookie_policy	11 months	The cookie is set by the GDPR Cookie Consent plugin and is used to store whether or not user has consented to the use of cookies. It does not store any personal data.

Cookie	Duration	Description
_ga	2 years	This cookie is installed by Google Analytics. The cookie is used to calculate visitor, session, campaign data and keep track of site usage for the site's analytics report. The cookies store information anonymously and assign a randomly generated number to identify unique visitors.
_gid	1 day	This cookie is installed by Google Analytics. The cookie is used to store information of how visitors use a website and helps in creating an analytics report of how the website is doing. The data collected including the number visitors, the source where they have come from, and the pages visted in an anonymous form.
vuid	2 years	This domain of this cookie is owned by Vimeo. This cookie is used by vimeo to collect tracking information. It sets a unique ID to embed videos to the website.

Cookie	Duration	Description
IDE	1 year 24 days	Used by Google DoubleClick and stores information about how the user uses the website and any other advertisement before visiting the website. This is used to present users with ads that are relevant to them according to the user profile.
NID	6 months	This cookie is used to a profile based on user's interest and display personalized ads to the users.
test_cookie	15 minutes	This cookie is set by doubleclick.net. The purpose of the cookie is to determine if the user's browser supports cookies.
VISITOR_INFO1_LIVE	5 months 27 days	This cookie is set by Youtube. Used to track the information of the embedded YouTube videos on a website.

Cookie	Duration	Description
_gat_gtag_UA_32255482_2	1 minute	No description
CONSENT	16 years 8 months 9 days 15 hours 12 minutes	No description
huBv		No description

Peer Support. Join the community

Subscribe to Pain Matters

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

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

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

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

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

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

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

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

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

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

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

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

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

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

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

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

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

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

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

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

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

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

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

Fundraise for Pain Concern