Pain Concern

Making pain patients’ voices heard across Europe and changing the prescribing culture

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Almost 100 million EU citizens have chronic pain, but there is still much progress to be made in improving diagnosis and treatment. Pain Concern’s Rowena Jacobs attended the fifth Societal Impact of Pain symposium to find out how patient groups, healthcare professionals and policy makers are coming together to push pain up the agenda.

We hear about a successful initiative to change the culture around opioid prescriptions in Italy and the problems facing patients across the continent due to an excessive fear of drug dependence, while Northern Irish representatives explain how the Painful Truth campaign has brought the patient experience of pain home to healthcare professionals and policy makers, leading to greater recognition of pain.

Pain specialists at the forefront of the campaign for better care explain why education and awareness raising is still such an important issue and Lars Møller, representing a Danish patient group, recalls his struggle to get treatment for pain in the face of ignorant healthcare professionals. Finally, people in pain are urged to get involved in the fight for better pain management services by putting pressure on politicians.

Issues covered in this programme include: Medication, drugs, prescription, misdiagnosis, policy, misconceptions, educating healthcare professionals, opioids, raising awareness, funding of pain services, GP, patient voice, legality, controlled substances, dosage, chronic primary pain, pain as a condition in its own right, research and stigma.

Paul Evans: Hello and welcome to Airing Pain, a programme brought to you by Pain Concern, the UK based charity working to support and inform people living with pain and healthcare professionals. I am Paul Evans and this edition has been funded by a grant from Grünenthal.

Chronic pain affects almost 100 million European citizens and that includes fifty per cent, half, of the older population. It causes 500 million days of illness per year, with a cost to the European economy of more than 34 billion euros. In November 2014, the European Pain Federation (EFIC) held its fifth symposium on The Societal Impact of Pain in Brussels with the aim of raising awareness of the impacts that pain has on our societies, health and economic systems. Now those statistics are mind-boggling – perhaps too large to comprehend. Put another way, there are 100 million individuals who will have their own personal stories of how pain has impacted on their lives, the paths they have taken or failed to take, to receive adequate treatment or support. Lars Møller from Denmark has been a pain patient for seventeen years. He is Vice President of the Danish Association of Chronic Pain Patients and a member of Pain Denmark. He spoke to Pain Concern’s Rowena Jacobs.

Lars Møller: When I was a little boy, I was always doing sports and stuff, I couldn’t sit still. When I was around eighteen years old – I did a lot of windsurfing and athletics. One day after jogging and weightlifting, I was cycling up a hill and suddenly I felt like this burning pain in my shoulder. I went to the doctor and he checked me out but he couldn’t really find anything and I kind of learnt to live with it. Actually, I started playing tennis with the left arm and started writing with the left arm but then came pain in the left shoulder. Two years later, I was in Australia, doing windsurfing training and when I came back, I was out doing some try-outs and I did a big loop and when landing it, I had the same pain in my forearms but this time it was much worse. I could not sleep. At that time I started a sports course at University and we had to do a lot of physical things – after one year, my whole life broke down – I could barely walk down the stairs. I was thrown around the health system – they could not really measure or see anything. They found some unspecific things but could not give me a condition.

Evans: Now Lars Møller’s story of frustration will be familiar to many of the 100 million Europeans living with chronic pain. Chronic pain as opposed to acute pain is continuous, long term pain of more than twelve weeks or after a time that healing would have been thought to have taken place after trauma or surgery. Hans Kress is Head of Department of Special Anaesthesia and Pain Therapy at the Medical University of Vienna. He is a past President of the European Pain Federation

Hans Kress: Our problem is that even physicians, even healthcare professionals, even university teachers in medicine simply think that chronic pain is nothing else but a persistent acute pain due to another chronic disease. When you have this misunderstanding, when you misinterpret chronic pain as being nothing else than a prolonged acute pain, then you will not understand the problems of your patient, you will not understand that treatment is different and finally you will not be able to treat the patient in a proper way.

When you have this wrong belief, then of course you will accept and you will expect that when the underlying other chronic disease is properly treated, the pain will automatically disappear. That means that when you no longer find the symptoms and the signs of the underlying disease, you believe there cannot be any pain any longer. If the patient still tells you that, ‘I am still suffering from chronic pain’, then many healthcare professionals blame the patient of exaggerating, of malingering, of being a hypochondriac.

That is a real problem for the patient who feels not understood, who feels really neglected – it is also a problem for the whole healthcare system because then such a patient will produce a lot of additional costs, not only within the healthcare system but for the whole of society because the patient still has pain and because of this pain, he will continue to look for a solution, to consult other physicians, to go to hospital, to undergo a lot of unnecessary but very expensive diagnostic or maybe even surgical procedures. So, one of the problems is to communicate to lay people as well as to healthcare professionals that you cannot see pain – pain is not visible – you cannot objectively measure pain but nevertheless when the patient tells you, ‘I am still in pain’, this is a fact.

Møller: I actually ended up with very bad depression and anxiety attacks. I gave up on the public system and went to New York. I was given some herbs there which gave me anxiety attacks and on return I was committed to a psychiatric unit and was given electro shocks. I was there for half a year. I kept saying to them that they had to give me something for my pain but they kept giving me antidepressants. They said the depression was the cause of the pain but I knew that it was the pain that led into depression. It seemed like they were blindly trying to find a somatic reason, like a physical reason, and of course you should always do that but you have to, in the meantime, start some form of treatment or guidance – I did not get any help.

Every time I encountered a new doctor, they were really arrogant because they did not find anything and when I tried to tell them I did not care about the diagnosis, I just needed some help with the pain, with being able to sleep, being able to go to school, being able to go shopping/buy groceries… But it seemed like they had blindfolds on – they just focused on a diagnosis.

Kress: We have to educate the physicians of the future so that they understand the difference between acute and chronic pain and that the treatment concepts for chronic pain completely differ from acute pain. Of course, we have also to educate our politicians and the decision makers in our health system because the decisions are not made by physicians in our healthcare systems – the decisions are made by regulators, by administrators, by politicians. They must understand what it means to properly treat chronic pain patients and that it finally will even save resources that can then be used for other things and other purposes.

Evans: Dr Hans Kress of the Medical University of Vienna talking to Pain Concern’s Rowena Jacobs at the 2014 European Pain Federation’s Societal Impact of Pain symposium in Brussels.

Professor Giustino Marassi is a pain doctor in Italy:

Giustino Marassi: I appreciated very much the discussion about educational and cultural approach. Those are two completely different things in my opinion and I was a little bit impressed that the audience this morning voted that the most important aspect is education. To me, the most important aspect is culture because education is just one small part of the culture – nothing else than this.

To give an example, which is very clear, in 2000 in Italy, every doctor had received clear education on the effects of opioids, the efficacy, the side-effects, etc., etc. However, we were still in a moment of our history, like it is for many other countries where we had this concept of opiophobia deriving from an old, old story that was the war of the opium in China… that had completely confused the mentality of the doctors – putting together the use and abuse of opioids for addiction and the use of opioids for therapy, which are two completely different things.

At that time, a doctor in Italy, did not have (as it is in many other countries still today) the possibility to prescribe opioids. First of all, we just had morphine (injectable morphine) as a drug and it was almost forbidden. It was used just in very exceptional cases, which was stupid, completely stupid, because, we need opioids to care for pain. So you cannot oblige people to prescribe opioids on a [triplicate] form with completely different rules inside of the hospital law, outside of the hospitable law.

At that time, if a doctor was found with a vial of morphine in his bag, when he was going to visit a patient at home, he could have been arrested, because it was forbidden to carry out the opioids. This was the consequence of a bad culture. Since then, we have made many, many, many steps forward and that is why we now have a completely different cultural approach.

But, going back to my previous topic, doctors did not know at that time, less on the use of opioids than what we know now – this is education, which is something different. So, you can have a good education on the use of drugs, but you can have a completely mistaken cultural approach and so you don’t do anything.

Evans: Italy’s Giustino Marassi. Now cultural barriers which stop people who need controlled medicines like morphine for their pain is an area of research for Dr Willem Scholten and his team. They analyse the legislation and policies of twelve European countries from the Baltic States in the north to Greece, Turkey and Cyprus in the south.

Willem Scholten: If you have so many barriers, it is like a water pipe where you have twelve valves or more in it and the water starts running, only after you opened the last one. So it is very important to have a good analysis and to take away all these barriers.

Legislation barriers can be that the law says in some countries, that a patient can get the medicines only for seven days at a time – when you are a chronic pain patient, it is quite a burden to go after new prescriptions every seven days. Sometimes it is even worse, because you can solve this maybe, by having the doctor prescribe multiple prescriptions at a time, but if there is also a limit on the validity of the prescription, then you need to go to both the doctor and the pharmacy every so many days.

Other things are legal limits on the dosage and legal limits that are lower than sometimes needed for patients. There are limits on who can prescribe – pain is almost in any medical specialty so every medical doctor should be allowed to prescribe. Of course, he should make sure he has the knowledge of how to treat pain – once he is knowledgeable on the topic, he should be able to prescribe. In many countries, it is only an oncologist or only a GP who is allowed to prescribe and other doctors are not allowed to do so.

These are the legal barriers but what we experience also – in many countries the people there told us – that the medical education on how to treat pain is limited just to two/three hours. The people who get really good education in pain treatment are the veterinarians, so our cats and dogs are better treated than we are treated.

Another issue is the attitudes, some people think that they will become dependent immediately when they are treated with morphine for their pain but actually, it is a very low percentage of people that become dependent on these substances and then we can treat them and help them to get off these substances – it is not the end. When you are for a long time in serious pain at that moment the symptoms should be treated, instead of not being treated because of a fear of becoming dependent on something. That likely will not happen.

The Italian initiative is another sign that the pain management is getting more and more important in politics. Also, last summer, the World Health Authority adopted the resolution recognizing that people have a right to health – that is a human right. That right to health is served by having good access to pain medicines. And the Italians have been building forth now on that resolution. Also at the same time they introduced a law for their own country, but I want to stimulate that other countries also take measures. I think that is a very positive sign but other countries in Europe will need to pick up because, finally, it is the country that decides. And Italy can tell others that you need to treat your patients well – but the country’s role is to create the conditions for being able to do so. Of course, being as it is a human right, the patient can always go and file a complaint with a human rights body, either at a national or international level. Unfortunately, the large majority of patients just let it go.

Evans: Dr Willem Scholten. Neil Betteridge is Vice Chair of the Chronic Pain Policy Coalition – a forum that brings together a wide range of professional bodies, patient organisations, including Pain Concern, parliamentarians and industry representatives in the UK. It works closely with an all-party parliamentary group in Westminster.

Neil Betteridge: One of the things, that is very important to get the support of any politician or policy maker is that, if they listen to you, are they confident that you are representing the whole community or is somebody else in chronic pain going to come along tomorrow with a different agenda? The more we can reassure them that we are speaking with one voice and that there is a consensus behind what we are saying, then that is the thing that gets you off to a fantastic start – that is a big green light.

Therefore, I hope out of today’s event, The Societal Impact of Pain meeting here in Brussels, that one of the things that we drive towards is a more focused and prioritized agenda with maybe one or two key messages, key requests that we want to take to our policy makers. If we are then consistent, same messages but different messengers (different people doing it) but the same things being requested at local, national and international level, we are far more likely to be successful and effective. That is the duty we owe to our patients – to be effective.

Personally – and I think to an extent, I am speaking for the coalition – we need to be clear about our evidence base – numbers affected – but there are so many numbers, we need to choose the ones that will have the most positive impact. As I mentioned on the panel discussion here at the meeting, it is easy to use the big numbers because we want so many people to be aware that this a massive problem. But there is a danger there – a risk that the numbers might seem so large that surely, if everybody is affected, it can’t be that serious. Or the other danger is that if the numbers affected are so big – ‘Well, I’m a politician. I’ve only got a year left in my post. What can I do?’ – so they don’t do anything.

So, I believe, yes, it is important to articulate the prevalence – of just how many people are affected – but then quickly move to more specific groups of patients, where there are specific solutions that we can offer. I think we need to get the evidence base right with statistics, but everybody using the same statistics to support the messages.

I think we need to develop what we believe, best practice looks like and I am not speaking just about pain medication there – that’s important, of course – I am also talking about how structured self-management can be brought into the pathway; I am talking about the undergraduate training that is needed. If we can recognise, if we can describe what best practice is and all of the stakeholders – from patients to clinicians – all agree on that, then we have got something to lobby for. As long as we are taking rational arguments with evidence behind them, then that is the thing that is going to make us successful.

I think this community itself has got a job to do, because at the moment, I am not sure whether, at the European level, we could take that sort of consensus to the policy makers. If I am right in that, we have got some urgent work to do because we might win the support of individual policy makers and then not have the solution to give them and that would be catastrophic.

Evans: Neil Betteridge, Vice Chair of the Chronic Pain Policy Coalition in the UK.

Health care is of course devolved to individual nations within the UK. In Northern Ireland the Patient and Client Council provides a powerful, independent voice for patients, clients, carers and communities on health and social care issues. You can hear more about their work in Airing Pain programme number 43 which you can still download from the Pain Concern website and that is painconcern.org.uk. Louise Skelly is its Head of Operations:

Louise Skelly: A few years back, a number of patients came to us, talking about their experiences of living with chronic pain and also their experiences of the health and social care system in Northern Ireland. Within the Patient Client Council, we linked up then with the Pain Alliance and we recognised then that this was a voice that had not been heard in the system, very much an invisible voice in the system. We set up a steering group made up of, not only of clinicians and people from the Patient and Client Council, but also of patients and we set out on the journey of going out and finding out what it was that does not work for patients across the province. That culminated in the publication of the Painful Truth which came out early last year. We then issued that widely to decision makers across the system. The Minister launched it. At its launch, he announced that chronic pain was to be recognised as a condition in Northern Ireland. That was a fairly major step forward.

The Painful Truth made ten fairly significant recommendations and as we sit at the moment, seven of those have been accepted and some of them partially accepted – so we are still working on a lot of the outcomes of the Painful Truth.

Evans: Louise Skelly, Head of Operations of the Patient and Client Council in Northern Ireland.

Dr Pamela Bell is Chair of the Pain Alliance of Northern Ireland:

Pamela Bell: I think that this has been a most remarkable survey – I know of no other that is quite like it. First of all, this was a voice from across our population, of all those who suffer from chronic pain, not just focusing on those who attended a Pain Clinic or people with one particular type of pain, but right across the population. It was very large and that reflects the enormous PR campaign that there was to raise awareness that the survey was going on, involving quite a large number of patient support groups and charities in focus groups to help to inform the overall structure and style of the report.

It has just been such an unusual and unique report, which, if not exactly opening our eyes to things that are new, in terms of problems that people have when they live with chronic pain or really showing us particularly where the gaps are in the services for them, but it has just coalesced everything into one major report where we have had both statistical analysis allowing us to present to our population and present to the members of the legislative assembly, if you like, the facts and figures of chronic pain.

I think more importantly, is what has come out of the qualitative analysis – those patient stories, have really made clinicians, carers, politicians sit up and take notice. It has been hard to listen to – some of the stories are extremely poignant and some of the messages for healthcare professionals are not easy to listen to. It would be lovely to say that we were doing a really good job, but if we knew we were doing a really good job, there would have been no need to do this survey and to publish this report. So we have to listen to where we are falling down.

Part of that is accepting that people have pain – it may not be very easy to diagnose, it may not be very visible, but it is nonetheless real and has a very real detrimental effect on their physical, their emotional health and their financial health too. I think, by getting those stories out there, there are a lot of people for whom those stories will have resonance; they recognise that they are not alone and, hopefully, be not quite so stigmatised.

This is something that we continue to want to do – we want to continue to engage with a variety of patient groups, but particularly those patient groups where we have identified that perhaps the services that they have are not now, currently, as good as the services that they used to have, because that gives us real power to go and say to those who are responsible for commissioning and delivering our services: ‘why is this happening? And these people have a very real need – can you help us to do something about it? Can we help you to make the services more appropriate to them? Can we help you (this is particularly the role of the Patient Client Council) to engage with our commissioners and with those who deliver our services to make sure that your voice is heard in all of this?

Evans: Dr Pamela Bell of the Pain Alliance of Northern Ireland. You can read more about the Patient and Client Council’s work in Northern Ireland at their website – patientclientcouncil.hscni.net (‘HSCNI’ stands for health and social care Northern Ireland). Before we finish this edition of Airing Pain, I’ll just say that we at Pain Concern believe the information and opinions expressed 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. Don’t forget that you can still download all editions of Airing Pain from painconcern.org.uk or you can get CD copies direct from Pain Concern. The last words from the European Pain Federation symposium on The Societal Impact of Pain go to the Federation’s President, Dr Chris Wells. He is speaking with Pain Concern’s Rowena Jacobs:

Chris Wells: Twenty per cent of the population have pain and that actually means 100 million people in Europe. Now, they are not all in severe pain – of course not and they have not all got disability from that pain, but a significant number have got pain and disability and reduction in quality of life, and they are voters – they need to vote and we need to link up throughout Europe with all the different people, lots of patient groups and actually use the patient groups to inform politicians and in particular to mould policy.

For instance, we were talking today about the fact that in the UK, if you have back pain, you are supposed to be seen by a multi-disciplinary team within six weeks and two of the patient groups said, ‘we did not know that’. They should know it and they should tell all their people and all their people should explain that this is what should be done. If you get acute back pain in England, you should go to your GP and say, ‘this is what is supposed to happen’. The GP does not know either, so do it.

Only, four per cent of patients attending with pain when they first have their diagnosis got any information – that is awful – it is all there – it is all on the internet. So we should make sure that there are good sources on the internet of informed communication. If you can do that, then patient groups can inform each other about this and it could be viewed.

People have criticised GPs and said that these GPs are a health risk. The problem is not that the GPs are necessarily a health risk – they do not have great tools – but unfortunately, non-steroid drugs and the opioids and the other drugs that we use for pain don’t work particularly well. So they know, when they have tried one or two simple things on the patient, it is going to be a long and hard road. Of course they don’t really want to see the pain patient because they don’t really know how they can help them. If you come in with a sore throat and a nice suppurating mass in the back of your throat, the GP is delighted: he puts you on antibiotics; he knows if you see him again, you will say, ‘oh thank you doctor, you are wonderful’. That is great, but when somebody comes in with back pain, it is not quite so easy – ‘we’ll put you on these drugs’ – then you come back and say, ‘well, these gave me side-effects and those didn’t help’ – he doesn’t really want that hassle, so we have got to help them.

We have got a difficulty in the UK with what works. We have got a difficulty with access because we do have multi-disciplinary teams, physios… who are very good. I work in Liverpool and Bolton also – it is a great team there: they see the patients; they help who they can with physio, with exercise; they refer them to orthopaedic specialists if there is any suggestion of surgery or anything else might be required; but they also refer them to the Pain Clinic – so, I actually get patients in Bolton, with eight-week, ten-week histories of pain. Those are the ones who I look at. When I look at my results, everyone else has got much better results, but the ones with five-year history, my results aren’t as good. Early assessment, early management, prevention of chronicity is much better in the future for quality of life and actually that saves money. If we could just spend a little and modify the pathways, then we save money in the long term. This is what all politicians have to do.

Contributors:

Lars Møller, Vice President, Danish Association of Chronic Pain Patients
Prof Hans Kress, Head of Department of Special Anaesthesia and Pain Therapy, Medical University of Vienna
Dr Giustino Varassi, Pain Specialist, Italy
Dr Willem Scholten, International Doctors for Healthier Drug Policies (IDHDP)
Dr Willem Scholten, International Doctors for Healthier Drug Policies (IDHDP)
Neil Betteridge, Vice Chair of the Chronic Pain Policy Coalition in the UK
Louise Skelly, Head of Operations, Patient and Client Council, Northern Ireland
Dr Pamela Bell, Chair of the Pain Alliance of Northern Ireland
Dr Chris Wells, President, European Pain Federation.

From nerve-blocks to spinal cord stimulators: how interventional approaches can help

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Physiotherapy, exercise, medications and clinical psychology all play an important role in pain management, but what happens if these treatments don’t give people the relief they need to get their lives back on track?

For some patients, more invasive treatments can make a big difference, but there are often difficult decisions to be faced, as Paul Evans discovers from sitting in on one of specialist in interventional pain management Dr Ron Cooper’s clinics in Causeway Hospital, Coleraine.

We hear from patients who have often waited years before being referred to the clinic where they will be considered for interventional treatments such as spinal cord stimulation, nerve-blocking injections and radio frequency treatment. Dr Cooper explains why interventional treatments are more appropriate for some patients than for others, how they are thought to work and why it’s important to see them as part of a broader pain management strategy.

Issues covered in this programme include: Nerve blocking, spinal cord stimulators, medical intervention, invasive treatment, radio frequency treatment, neuropathic pain, risk, side effects, operation, surgery, hernia, burning pain, back pain, complex regional pain syndrome, pelvic pain, nerve pain, physiotherapy, medication, multidisciplinary approach and scoliosis.

Dr Ron Cooper: Seventy per cent of the patients that are referred to me have back pain: lumbosacral pain. About 10 to 15 per cent of the patients have neck pain and then the rest are a mixed bag. The mixed bag are the ones with the things like trigeminal neuralgia, which can be effectively treated at the pain clinic by intervention, or post-traumatic pain, or people with neuropathic pains, which are more difficult to treat.

Neuropathic pains can range anywhere in the body, as can post-surgical pain, but back pain is the biggest feature here, there’s no doubt about that. A significant number of these patients really are here because they just want reassurance, and often they’re doing a scan, and we’ll reassure them that the scan is fully harmless, that can be done, and the examination will exclude any red flags. That’s what you want to look out for. Very few of them will have significant pathology, and that’s a fact, but you have to see them to know.

Paul Evans: Dr Ron Cooper. Now, he and some of the dozen patients he saw at one of his clinics in Causeway Hospital, Coleraine, were willing for me to sit in on and record their consultations.

But before we join them, don’t forget Pain Concern’s 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 relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.

Dr Cooper’s first patient was suffering from neck pain.

Patient 1: The pains come from the spine, from about the very top of my neck, down to probably my bra strap area. The pain to me, when I’m just actually walking or sitting, feels like it’s grinding, or like a hack saw, and then it seems to annoy the muscles and then it flares up. And I think when they flare up, it’s putting pressure on my head, because I’ve had a CT scan of my head then, because of the vomiting and the whatever, and it’s come back absolutely clear. So we’re trying to rule out other things that are causing the headache – it’s not headache, it’s pain in the head – but I think it still seems to be coming back to the muscles in the neck.

Cooper: Yeah. Ok, can I just check your neck again to see, because that’s important? And does it go into the shoulder as well?

Patient 1: It goes into these muscles.

Cooper: Yeah, but not down the arm?

Patient 1: No, not down the arm.

Cooper: And is it mainly on the right side?

Patient 1: Both sides.

Cooper: Both sides, yeah, but the right’s the worst? [Pause] There? Is it sore there?

Patient 1: Yeah.

Cooper: And you’ve never hurt your neck at all, no?

Patient 1: No, they just say it’s wear and tear. And I think the first x-ray I had for it was about 20 years ago.

Cooper: So about there?

Patient 1: Yeah.

Cooper: And there? Your muscles are quite tense.

Patient 1: Yeah. But that’s nothing, I mean, today’s a good day! [Laughs]

Cooper: Well yes, today’s a good day – no, I can see that! Ok. Well, what I’d said to you was that we would try the tablets to see, and if the tablets didn’t work then we could try some injections to see if that could identify any cause of the pain. It’s possible you’ve got what’s called ‘cervicogenic headache’. That just means your headache, we think is coming from the neck. Cervicogenic is the cause of it, we think.

Now, in order to try and see if that’s right and to try and help that, we can do what’s called diagnostic injections in the neck, to see if that affects it. And that’s done in the theatre, with the x-rays, with some care taken and precise needle location to try and find it out. There is, however, some risk with it, you should understand. There’s a risk of flaring up the pain, in other words, which can happen any time. There’s a risk of producing some numbness in your neck.

Patient 1: Right.

Cooper: There’s a risk of injury – permanent injury – so if something goes wrong you could either have a fit or a convulsion. That’s very rare, but I think it’s something that you have to bear in mind. I think it’s a reasonable thing to do and I think it’s obviously worth a try. And if it does help it then it may allow us to do some other treatments. If the injections don’t help it, and are not likely to improve that, then it may be a case of trying to work at relaxing the tension by doing the injections in the muscle – such as, Botox – with physiotherapy, with stretch exercising which may help it, that’s a possibility. Is there a cure for it? Probably not, but hopefully we can make it easier. So how do you feel about that?

Patient 1: Yes, well it’s getting to the stage where you are the last port of call, if you can’t help me, I might as well, you know… that’s…

Cooper: Oh no! I wouldn’t say that, I wouldn’t say that! I think it’s worth a try.

Patient 1: Yeah, I think you’re…

Cooper: Can you come up tomorrow to have it done?

Patient 1: Tomorrow is…

Cooper: Afternoon, Friday?

Patient 1: Yeah, yeah.

Cooper: Any questions?

Patient 1: No, I’m absolutely fine just to let you have your go. [Laughs]

Cooper: Right, there are no guarantees with this, but it’s worth a try to see.

Patient 1: Well yeah that’s understandable.

Cooper: It’s more of a diagnostic thing than a treatment.

Patient 1: Ok.

Cooper: OK? See you tomorrow then. Half past one, day procedure ward.

Evans: Twenty years is a long time to have pain like that, and she said now: ‘This is the last chance saloon,’ if you like. How do you feel about that?

Cooper: I don’t think that’s quite true. I think she’s probably told the other doctors she saw that as well. I think she is searching for a cause too much. I think that, you know, at some point she may need to have some multidisciplinary approach where she has some help with trying to cope with her symptoms, deal with them and hopefully stretch, relaxation will manage that. But I think before I would like to see if I can just exclude a cause in her neck, because if it is cervicogenic headache, it can be easily helped by some radio frequency treatment.

But yes, it’s a long time, but that’s often the nature of people with chronic pain, with no physical findings as such. And often the search for a cause can be a theme, really, and sometimes they just need to be able to say ‘no, there’s nothing we can find’, or ‘we’ll have to manage it differently’. And I mean she’s not a suicidal person, she’s not somebody like that, and she’s well-adjusted and not overly depressed either. I just think that she’s not been able to identify it.

[Rustling of papers; people sitting down]

Cooper: Ok, so, is that the stomach area?

Patient 2: No it’s down here, is it not?

Cooper: Right. Oh, down here, yes. Have you had an operation?

Patient 2: I had a double hernia done.

Cooper: When was that done?

Patient 2: …2010, I think?

Cooper: And when you say double do you mean both sides or two sides in one?

Patient 2: Uh-huh. I had both sides done.

Cooper: Right and left? Oh right, together?

Patient 2: Uh huh.

Cooper: That’s unusual

Patient 2: [Laughs]

Cooper: You just wanted to get it over with in one go?

Patient 2: Aye. [Laughs]

Cooper: Were you asleep for the operation?

Patient 2: Oh aye. [Laughs heartily]

Cooper: Did they do it with mesh?

Patient 2: Yes.

Cooper: Mesh.

Patient 2: After out there, I started getting this pain down… near the groin.

Cooper: The left groin?

Patient 2: Uh huh. It was like the pain that started with the hernia. So then my own doctor, I told him about it and he says: ‘I’ll get you in to see a specialist. And he says: ‘No, the mess and all…’

Cooper: Worried in case it was the hernia again?

Patient 2: Yes, I thought it was that. And then I kind of got worried in case it was something else. They’d taken me out and…

Cooper: To check out the testes and the scrotum.

Patient 2: Yes.

Cooper: No lumps or bumps?

Patient 2: No lumps or bumps. And there was nothing cancerous or anything like that

Cooper: Because you were obviously worried about that.

Patient 2: I thought there would be prostrate [cancer] or something.

Cooper: Yeah, you saw the TV campaigns and things.

Patient 2: Uh huh, you know, it was scary.

Cooper: Right

Patient 2: So they put it down to… that this pain here was coming out of my back.

Cooper: You’ve had a bad back for a number of years.

Patient 2: [Knowingly] Ohhh. So that’s why I’m referred back to you. [Laughs]

Cooper: Have you still got the pain in the groin?

Patient 2: Uh-huh.

Cooper: Can you tell me a bit about it? What, is it there all the time or…what’s it like?

Patient 2: Like a burning thing and, you know, it would be there all the time and it’s really…

Cooper: I’m trying to work it out – what would it be, like, shooting pain as well, or sore to touch or do your clothes, underpants make it sore if you touched it gently?

Patient 2: No.

Cooper: You don’t bother it?

Patient 2: No…

Cooper: So really burning’s the main thing?

Patient 2: Burning and… if you pushed, you know…

Cooper: Where the scar tissue is?

Patient 2: Yes. And the lower back’s very sore.

Cooper: Right. Is this pain different than the pain you had before you had the operation?

Patient 2: No, it wasn’t burning before, no, it wasn’t, no.

Cooper: OK. So it’s a different sort of pain.

Patient 2: Aye.

Cooper: And when you pass water does it affect it?

Patient 2: Sometimes.

Cooper: Does anything else you do affect it – make it worse or make it easier?

Patient 2: No.

Cooper: Ok, now you say you have back trouble as well?

Patient 2: Uh-huh.

Cooper: Do you get the back pain when you get that as well?

Patient 2: Ah, I have back pain most of the time.

Cooper: Yeah I know. It’s been there for years – I’ve done many treatments with you.

Patient 2: Uh huh, it’s still…

Cooper: Still trouble?

Patient 2: Still trouble.

Cooper: OK, let’s have a look at your back and then we’ll have a look down below, OK?

Patient 2: No problem.

Cooper: Can you just slip off your jacket there? [Sound of movement, standing up, etc.] So who’s there in addition now… who’s at home with you?

Patient 2: Aah, uh, the other half! [Laughs]

Cooper: Ok. No problem. How’s things at home?

Patient 2: Aye, just… normal. Don’t do very much, you know.

Cooper: There’s a big scar down the back there, is it from the surgery? Now I’m gonna… it’s the left side mainly, is that correct?

Patient 2: [In pain] Arghh, yeah.

Cooper: Sorry.

Patient 2: [Slightly quieter] Arghh.

Cooper: Sorry about that. You’ve had treatment for the shoulder, is that right?

Patient 2: Uh huh.

Cooper: And physiotherapy?

Patient 2: I’m going now to the…. [hesitantly] pain something…

Cooper: …management clinic?

Patient 2: That’s it.

Cooper: That’s right. Did your doctor get you sent there?

Patient 2: Uh huh.

Cooper: I think I actually suggested to your doctor a few years ago about the pain management programme, I think he got round to sending you to it now. I think that’s the best thing for you to help manage the pain.

Patient 2: Uh huh.

Cooper: The pain you’re describing is likely to be nerve pain.

Patient 2: Nerve pain?

Cooper: Yeah, which could well be coming from the back, but you’ve had back pain now for 10, 12, 15 years, and that’s never going to go away, you know that?

Patient 2: Oh aye.

Cooper: The injections could manage it for a good while.

Patient 2: Yes.

Cooper: And help it. I just think that the way things are at the minute, I don’t think that’s the best thing for you. You know, I’m not saying we’ll never do it, I’m saying it’s not the best thing at the minute. I think the best thing to do is to… the medication you’re on, probably stay on what you’re on, but I’ll write to your doctor about that, rather than… so don’t change anything yet.

Patient 2: Uh huh.

Cooper: I think the best thing is the pain management programme and I’d recommend you go there. It’s not going to be a cure, but it’ll hopefully help you manage it, because you’re very stiff at the minute, generally, and you need to get loosened up a bit. That’ll come.

Evans: One thing I noticed, Ron, was his movement.

Cooper: He’s exhibiting a lot of what we call ‘pain behaviour’. A lot of it is really to, if you like, demonstrate to others that he has pain. He has pain, but he has got a lot of pain behaviour. His movement was – it’s not a pathological movement – it’s… some laymen would say it’s putting on things, but what he’s doing is he’s emphasising how he feels: it’s kind of attention seeking behaviour. And you’ll find that a lot of patients who have a large psychological component to their pain, as opposed to a physical component, actually do exhibit this.

He’s got multiple visits to his GP, and the other specialists, and he really is going to the best place: a pain management programme. That’s not going to cure him, by any means, but hopefully it will help him identify how he is and see how things are and he’ll cope with his pain and try a lot of self help where that needs to be helped. And he needs a lot of psychological help.

He’s not mad by any means, he’s a sensible person, but he’s in this situation where he’s one of these patients that’s susceptible to any sort of pain. He gets pain particularly after any operation he’s had and he’s had multiple operations in the past, by surgeons and people, and always getting problems. And often there is some non-physical problem at the root of this. But I can’t address that in my clinic: I’m an interventional pain physician mainly and so the important thing for me is not to stick needles in and not to change drugs drastically where I think that won’t help – I’ve got to be honest with patients.

Evans: Dr Ron Cooper’s next patient at Causeway Hospital in Coleraine has had back and leg pain for some years. She’s had various interventional treatments, including nerve blocks, and more recently a spinal cord stimulator. This works by sending small electrical pulses to the spinal cord from a battery-powered device which is implanted in the buttock or abdomen.

Cooper: You have what’s called a scoliosis in your spin, a twist in your spine. You can see it there in your x-ray and you can see the stimulator in place – there’s the wire there in your back, you see?

Patient 3: Yes, uh huh.

Cooper: So there’s the stimulator and there’s eight electrodes there. And you would say that that has helped the leg pain, but not the back pain and that’s always been the case.

Patient 3: Yeah.

Cooper: And it helps the leg pain by a good, you reckon, about sixty per cent.

Patient 3: Yeah.

Cooper: Better than it was?

Patient 3: Yeah.

Cooper: So you’d miss it if it wasn’t there?

Patient 3: Aye, aye, I would, aye.

Cooper: Because you remember we talked about turning it off to see and we tried that and you found it did help. So really, this is what you’ve got in your back, OK? [Sound of picking up a device] In there, it’s slightly bigger.

Patient 3: It feels bigger.

Cooper: How long has it been in there, how many years?

Patient 3: It was in three years ago, it’s just passed.

Cooper: That’s good and it’s giving you stimulation in there and that’s under the skin. It’s about the size of a cigarette box, it’s a bigger one. Now, we have different ones that can go in. So basically, it’s working satisfactorily and it’s doing what it can do, but at the time when we put it in, remember, we said that it won’t take away the pain totally and it probably won’t help with the back, and I think that was true, but at least it’s helping some of it which is better than nothing, would you agree?

Patient 3: Yeah.

Cooper: The medication – I think you still will require it. I think it’s important to keep doing the activities you do, keep as active as you can, and basically whenever the battery would stop working, when it wears out, then we can replace it. And we can maybe replace it with one of the rechargeable ones, because the less operations you have the better, you understand?

Patient 3: Because I’m actually already getting my gall bladder out as well! [Laughs]

Cooper: Ohhh dear, they’re doing the telescopic surgery… in Derry?

Patient 3: Well that affects the back…

Cooper: Yeah, you’ll need to tell them, they don’t know.

Patient 3: I told them, you see…

Cooper: Yeah, but what you need to do is, you need to tell them and in fact what I will do is I will write to your doctor and I will write a letter to you to take to the surgeon. Because what it means is you need two things: when you go into the hospital to have the gall bladder out, they’ll need to know, because you need to have antibiotics, which you’ll get anyway from the surgery, you’ll get that.

But you’ll also need to know, there’s a special thing they use called diathermy, which is a thing they use to stop any bleeding when they do the operation, so if they cut the blood vessels, they have to stop the bleeding, and they put electric currents through them. There’s a certain type of diathermy that they should not use, they need to know this before they do it and most of the surgeons know that, but I will send a letter to you, to take with you when you go in to say look and show that to the surgeon and anaesthetist to make sure they know that. Otherwise if they use the wrong one it could wipe out the stimulator and it would stop working.

If your stimulator changes after the surgery – sometimes you need a reset after the surgery – so what you should do is, when you go into the hospital, switch it off, when you’re in the hospital. You can use it after the surgery, OK, after the operation, but before the surgery it’s best to switch it off in case you forget to switch it off, because if you switch it off then it’s much safer. But really, people have had big operations with stimulators and no bother, as long as you remember those two things. And you can take the thing in with you, but switch it off before you go to theatre, alright, that’s my advice.

And if you have problems with it after you come out, contact Joyce again and we’ll see you again and readjust it. Maybe about two out of ten people might need to readjust it, but we’ll just have to wait and see. Anyway, good luck anyway!

Patient 3: Great, thanks very much, then! Bye!

Cooper: You’re very welcome. Bye bye!

Evans: What’s the principal behind the…

Cooper: Spinal cord stimulation? Well the basic answer is no one knows how it works, but the initial theory was that… it worked on the Gate Theory, where you stimulated the spine, and you blocked out the impulses coming from the painful leg, and it blocked them out, and that was a simple theory at first, but for about a millisecond we all… it’s not thought to be the case now, it’s thought to work on chemicals in the blood, chemicals produced in the spinal cord, which go to the brain. And endorphins are affected and inflammations affected, sympathetic activities and in fact inhibitory… no one knows, but we know it has complex effects, and we know that it can help certain types of pain and neuropathic pain. And the patient can turn it on and turn it off as necessary.

But it’s a system that we have the benefit of doing a trial to see if it’s going to work, because if it’s not going to work then we shouldn’t do it. And by putting in a temporary lead that come out through the body, and the patient tries it, for anything from a week to four weeks, then they’ll know if it’s working in their home environment; this is done and they go home. And if it helps significantly and I am convinced that it helps them, then we go ahead and do an implant. If the patient’s not convinced or doesn’t want to be bothered with it and I’m not sure, then we take it out. If there’s any doubt, we don’t do it.

And those that it works for, it works well. It works very well for pain in the leg – a single leg, a single arm, a single limb – and it works for other types of pain, more complex pain, where they have CRPS (Complex Regional Pain Syndrome), which is sort of a swelling of the leg. It’s also useful for amputation stump pain, but not phantom limb pain. It’s useful for pain after angina, which hasn’t responded to cardiac surgery, or failed back surgery. It’s used for conditions such as abdominal pain, conditions such as pelvic pain. It’s also used for painful bladder syndrome, where it can also control the urgency and the frequency of running to the toilet. It can also be used to control faecal incontinence, in certain cases, for the older or for the sick, so it’s got a lot of uses.

[Sound of walking in high heels; people sitting down]

Cooper: Hi, I’m Dr Cooper, and the physiotherapist asked me to see you, because you had back pain – is that right? For, what, a year or so?

Patient 4: Yep.

Cooper: And you’d been to your doctor, and he’d got you to go to the ICATS (Integrated Clinical Assessment and Treatment Services) physiotherapist – that’s a specialist physiotherapist who decides if you need to have an operation or not.

Patient 4: Mmm, hmm.

Cooper: And they did a scan of your back

Patient 4: Yep.

Cooper: And have you seen the scan?

Patient 4: No

Cooper: Ok, we’ll have a look at the pictures there, so you can you see it. That’s your bones in the spine, we call it the vertebrae, There’s the discs, those little black things – the shock absorbers – and there’s the spinal cord, where the nerves are, OK? And if you look down there, that’s nice and healthy. The first thing they tell you is you don’t need an operation.

Patient 4: That’s good.

Cooper: You understand that?

Patient 4: Yep.

Cooper: And that’s good, I’m glad that you said that. If you look down here, you see where it’s a little bit whiter, that shows that there’s some inflammation there, and that’s possibly where the pain is, down in that level, possibly. Now, the discs are starting to bulge a little bit, you can see a little bulge, you see there? That’s ok – a lot of people have bulging disks and it doesn’t mean anything. If the disk was to go right out and get prolapsed, then you’d need an operation. Anybody could need that, but you don’t need that. At the back of the spine – we’re looking at the muscles there – and the muscles are a wee bit thin there. You know, because the pain’s bad, you probably haven’t been doing too much.

Patient 4: No, because I can’t.

Cooper: Do you know the way when you go into a plaster of Paris, your muscles go weak? That’s the muscles in the back getting thin there. That’s the normal muscle and that’s the muscles getting thin. And that’s why it gets into a vicious circle. There’s the joints in the back there – see there? We call those the facet joints and that’s those joints. And do you see the way they’re thickened there, and they’re black? That shows that there’s some wear and tear there, or hypertrophy. It’s not a disease. It’s really just possibly – and the word to use is possibly – possibly a source of pain. It’s not definitely because we can’t tell from scans if the structure’s causing pain or not. We can just say it may be. It’s difficult to know the exact source of the pain without doing any more tests.

The ways to manage this are – you can obviously take painkillers, you can rest and exercise and do those things that you’ve been doing. I think because you’ve had it for so long – a couple of years now – and it’s not improved, the reasonable thing to do would be to try some form of injection to see if we can find exactly where the pain is coming from. It might be that the pain is coming from some of these joints down here that we saw on the scan and that are tender when I examine over them.

But the only way to find that out is to do what’s called a nerve block, where you put in needles into the back here – into where the nerves are, the facet joints – round there and you freeze it. A bit like a dentist looking for a bad tooth – try and find out which one’s sore. We think it’s down here somewhere. See if that helps it and give an indication if the pain comes from there. That may help it for a short time, or it may help it longer, or it may not help it at all. If it doesn’t help it at all and it’s been done right, then we can assume the pain’s not come from here.

If it’s not come from here, then there are other causes we can look at. But that’s the simplest thing. And if we do find that it’s come from there, there is some treatment that we might be able do to help it. We can do radio frequency treatment which may benefit it.

The idea in this treatment is not to cure the pain, but to relieve it – to allow you to get more active, to get the muscles built up again, to do exercise and get the weight down and just get more fit again. So it shouldn’t be seen as a treatment on its own, but should be seen in conjunction with – we call it rehab – it’s really just more activities and targeted therapy.

The one I would do would be done fairly precisely in the theatre, where you go to the day theatre and you lie on the operating table and we take x-rays of your back and we try and find where the structures are. We can’t see the nerves but we use the x-rays to help us guide the little fine needle to where the nerve should be at the joint. And then we usually put two or three injections with you awake to tell us what you feel, to test it, and then see if that helps it or not. It’s a very tiny amount of anaesthetic used in a controlled manner to see if that can precisely find if the pain’s coming from there or not. And if it is, then there might be something we can do to help it.

Patient 4: Well that’s great. As long as I can get release, that’s great.

Cooper: Any questions?

Patient 4: No that would be great.

Cooper: Ok, so that’s fine.

Patient 4: Let’s get to the bottom of it at long last.

Cooper: Well, hopefully we’ll get some benefit.

Patient 4: That’s great. Thanks very much.

Cooper: Ok then, bye bye. Ok, that’s good.

Evans: The nerve block injections – they are there purely to identify?

Cooper: Purely diagnostic. They do sometimes have a therapeutic benefit. We’re not sure why they have a prolonged benefit, but it could be because they are reducing the vicious circle – reducing the pain, reducing the spasms and allowing the patient to do more – and that could be what it is. It’s unlikely, however. But the point is that I do them in a controlled manner: patient goes to theatre, they have it done with periscope guidance to identify the targets and the bone where the nerve should be and a small tiny precise amount of anaesthetic – usually about 0.5ml, a tiny drop – is placed were the nerve should be.

And if that helps it, then we consider it a positive result. If it doesn’t, it’s a negative result. And then we will repeat that sometimes – repeat it to see if it gets a different result with a different type of anaesthetic. And if that helps, then we can say to the patient ‘we’re fairly sure – not 100% – fairly sure this is where your pain’s coming from’. And if it’s coming from there, the fact that we’ve identified it as a source of pain will help a lot of people. But, then we can offer another treatment – often we do radio frequency where we simply reablate the nerve, or cauterize or burn the nerve with radio frequency treatment in the same manner. And that should give a longer term result.

However, it’s important that the patient realises that this is part of a rehabilitation strategy, where you don’t get through the procedure and go away. They have to work at it, they have to improve their function and build up their muscles and change their lifestyle a bit – lose weight, build up the muscle tone at the front of their abdomen and hopefully reduce their analgesics and keep more active. And that’s important to get that emphasis on. People call them facet joint injections but they’re called precisely ‘medial branch nerve blocks’. The joint injection’s not something we normally do.

Evans: And back pain is a major problem.

Cooper: A major problem. In all age groups.

Evans: But you’re seeing extreme cases.

Cooper: Yes, yes, I must emphasise that: I’m seeing patients who have had pain for at least a year and some cases much longer. I generally do not see patients that have had pain less than six… several months – that would be the exception. Invariably all of them have treatment elsewhere, they’ve all seen their GP, had physiotherapy treatment – the majority have physiotherapy treatment – they’ve all had some sort of exercise programme and they’ve had several analgesics and maybe seen others specialists as well.

I do think, however, that we probably should be seeing patients earlier to try and prevent some of this kind of chronicity by doing earlier intervention: whether that be in the form of more active physiotherapy or more active rehabilitation or more earlier interventions – diagnostic interventions, treatments to do that. I think that we probably should be seeing them earlier. But you’re right; I’m seeing the tip of the iceberg.

Evans: But it’s important for people with back pain – including me, including just about everybody I know – not to get on your list and get operated on.

Cooper: I agree entirely, because I don’t want to be doing procedures on patients. I want patients to manage their pain, to get better themselves without this. But, you know, they have tried that. I do encourage them to try again before they do this and if there’s any doubt I’ll not do an intervention. The risks of the interventions are very low depending on what we do, but obviously it’s better not to interfere if you don’t have to.

Evans: Dr Ron Cooper’s final patient has had back pain following a car crash.

Cooper: We did radio frequency treatment where we did nerve blocks and burned the nerves and did you find that helpful?

Patient 5: It is absolutely fantastic, that’s exactly what I was looking for. Absolutely perfect.

Cooper: Ok, good. [Laughs] Because you had actually come looking for this treatment anyway.

Patient 5: I’d done my own research on the internet – Google’s brilliant – and was speaking to a person who said to me – I think the general safety guarantee’s like a year. But he was well into his fifth, sixth year and knew somebody else who was in their eighth year – pain free, spasm free.

Cooper: Tell us about how you found the procedure in terms of discomfort? The actual doing of the procedure.

Patient 5: The procedure – I don’t know… from the girls’ faces and that feedback there at the time – a big bear hug… at the time. It was, like I said, an hour, an hour and a half of pain and discomfort, but it’s going to save me, hopefully, any amount of it.

Cooper: Was it worse than the dentist or much the same as the dentist?

Patient 5: Then dentist doesn’t really bother me at all. I have quite a good pain threshold, you know, but it’s just if someone’s sticking a needle into the sorest part of your body…

Cooper: Do you understand that we had to find the sore bit to treat it?

Patient 5: Oh yeah, I fully understand the whole thing. But it’s the fact that I got six nerves done. Is that…?

Cooper: You’re unusual in that you had both sides done at once. Normally I would only do one side. And the reason I’d do one side is because it is uncomfortable. But you wanted to get it over with in one go and you did that and you’re away. How soon after did you notice pain relief?

Patient 5: Pain relief? Instantly… well, I suppose I was still under the effects of the anaesthetic and stuff, but from there on out, straight away. I was out in the waiting room for sort of like an hour and a half, two hours and I was very wary of getting down to put on my socks and shoes, which has given me bother for the last five years and it was absolutely pain free from that moment, right on.

Cooper: Painkillers – have you taken any?

Patient 5: I try not to take any tablets.

Cooper: But you do know – I’ve explained to you – it’s important to keep active. And you’re an active person anyway and you keep yourself fit and in good shape and it’s important to maintain that.

Patient 5: Yes.

Cooper: Over the years to maintain it – because I never to say to anybody ‘this is the treatment, that’s it’. You have to try and work it out yourself. But anyway, good luck with your stuff.

Patient 5: Thank you.

Cooper: Bye-bye now.

Patient 5: Cheers, bye.

Evans: You’ve seen about a dozen patients today and I’ve been privileged to sit in on it. There have been some very, very good results and some that perhaps need a little more help.

Cooper: You have to realise in this field that you will not help all of the patients all of the time and you will help some of the patients some of the time. And you really have to be prepared to accept your own treatment, if you like, failures. But try and always offer the patient knowledge or refer them elsewhere for a different approach. And just remember that you shouldn’t use the same thing on everybody and just because you can’t do that doesn’t mean it can’t be done – patients should be referred on as well and there are other ways to tackle problems. My advice for intervention is always use the least invasive, least risky procedure first, after other interventions have been tried. And it’s not the be all and end all, but it does help some patients fantastically well.

Evans: My thanks to Dr Ron Cooper, Consultant in Pain Medicine and Anaesthesia in Causeway Hospital, Coleraine, and to his patients for allowing me to it in on their consultations. Don’t forget that you can still download all the previous editions of Airing Pain or obtain CD copies direct from Pain Concern. If you would like to put a question to Pain Concern’s panel of experts or just make a comment about these programmes then please do so via our blog, message board, email, Facebook, Twitter or pen and paper. All the contact details are at our website, which is painconcern.org.uk. The last thought to Dr Ron Cooper on the interventional approach to pain management as opposed to the non-interventional approach.

Cooper: Some people seem to think that the only ways to treat conditions are by using needles or injections or burning or frying nerves and the others seem to think that there’s no role for that at all and it is only for psychology: it’s all in the mind – behaviour, exercise, rehab.

Most people that I know are somewhere in between and that one can’t really exist without the other. And all the patients I intervene on, I tell them that they must have some form of rehabilitation, some other way to back it up. And I think there’s room and in fact it’s essential that we work together. And the British Pain Society, while it has all it’s different special interest groups, namely, the interventional pain society, which I was the past chairman of, there are the psychology group – they are a multi-disciplinary society and we must have multi-disciplinary working and that’s essential. Regardless of how much intervention we do, we all have a role to play and we need more joined-up working.

Contributors:

Dr Ron Cooper, Consultant in Anaesthesia & Pain Relief, Causeway Hospital, Coleraine.

Airing Pain, the popular digital radio programme for people living with chronic pain, is returning for a brand new series.

Tune in to Able Radio for the first episode on Tuesday 3February at 8pm!

Since 2010, Airing Pain has brought together people with chronic pain and top specialists to talk about strategies and developments in pain care and living life to the full with pain. A unique service, Airing Pain has become an invaluable resource to people in pain, their families, carers and healthcare professionals. In 2014, over 134,000 people tuned into Airing Pain.

The first programme of the new series takes a look at interventional pain management. Dr Ron Cooper, a consultant in pain management and anaesthesia, talks to patients at his specialist pain clinic in Causeway Hospital, Coleraine about the use of invasive techniques or operations. Often used to treat back pain, these can include radio frequency procedures, neuromodulation treatment of neuralgia and spinal cord stimulators.

Other programmes in the series include women coping with the physical and emotional impact of on-going pain after female genital mutilation (FGM), and young people who support a family member with chronic pain. Top experts at the British Pain Society Annual Scientific Meeting in Manchester and also at the latest Societal Impact of Pain Symposium in Brussels, talk to Airing Pain about better education on pain care for healthcare professionals and politicians, cultural barriers to pain management and the need to develop unified action and policies across Europe for improved pain management.

Programmes are broadcast twice weekly, every Tuesday and Sunday evening at 8pm, on the digital station Able Radio and will be available to listen or download on painconcern.org.uk, alongside all 62 previous editions of Airing Pain.

Broadcasts are produced by Sony Award winning BBC producer Paul Evans. For Paul, working on Airing Pain has had a ‘life-changing’ impact on his knowledge and understanding of his own chronic pain, and his experiences are shared by many others. 80% of listeners surveyed say they find Airing Pain programmes helpful and 90% say they would recommend them to others.

‘When I’m having a bad day, I listen to Airing Pain. I find it extremely soothing. It helps me focus while I work’. Michelle B.

At Pain Concern, we believe Airing Pain is a vital service for people living in pain. However, we rely on funding to keep this resource going. If you like our programmes and would like to make a donation to Airing Pain, please visit painconcern.org.uk/get-involved/donate.

Join us every Tuesday and Sunday at 8pm on Able Radio as we repeat some of Airing Pain’s best programmes!

Tune in next week on Tuesday 18^th November for the first of five weekly programmes in our repeat series looking at reducing pain without drugs. Each programme provides information and practical tips on drug-free tools and techniques that can help to reduce pain, whether through acupuncture needles or knitting needles, TENS machines or the power of your own mind.

Following this, listen to six of our best programmes on self-management for advice on how you can get active without flare ups and communicate better with friends, family and healthcare professionals.

See below for the full programme schedule!

Since 2010, Airing Pain has provided a unique service for people living in pain, bringing together people with chronic pain and top specialists to talk about the resources which can help. In 2013 over 203,000 people listened to Airing Pain radio programmes.

Airing Pain is produced and presented by Sony Award winning producer Paul Evans. For Paul who also has chronic pain, Airing Pain has been ‘life-changing’. Paul’s experiences are shared by many others, with 80% of listeners’ surveyed saying they find the radio programmes helpful and 90% saying they would recommend them to others.

The programmes are broadcast twice weekly, every Tuesday and Sunday at 8pm, on the digital radio station Able Radio. All 62 editions of Airing Pain are also available to listen or download at painconcern.org.uk .

Listen out for our brand new series of Airing Pain airing in February next year!

Airing Pain Repeat Series

Schedule 2014/2015

Reducing Pain Without Drugs

*8pm Able Radio*	*Programme*
18/11/2014 23/11/2014	48	Nursing Beyond Drugs How nurses can use relaxation therapy, massage, acupuncture and empathy to help people manage their pain
25/11/2014 30/11/2014	47	The Power of the Mind Investigating ancient and futuristic techniques to reduce pain using the power of the mind: from mindfulness to neuro-engineering.
02/12/2014 07/12/2014	11	Music and KnittingPaul Evans learns to knit, and how music can be used for pain relief.
09/12/2014 14/12/2014	9	Relieving pain: TENS and acupunctureHow acupuncture and TENS can help relieve pain, plus, a new web service aiming to educate health professionals about pain.
16/12/2014 21/12/2014	4	Diet, CBT and mindfulnessHow diet can help manage pain, the benefits of mindfulness, CBT and exercise, and a Q&A with pain specialist Mark Turtle.

Self-Management

*8pm Able Radio*	*Programme*
23/12/2014 28/12/2014	5	Learning to live with painLearning how to live with pain and living with people in pain, and what pain management programmes do.
30/11/2014 04/01/2015	24	Exercise and managing painHow swimming can help manage pain, and a Q&A session with physiotherapist Paul Cameron.
06/01/2015 11/01/2015	6	Pacing and arthritisHow pacing can help people with pain regain control, plus arthritis myth-busting, the future of pain management in the UK and a Q&A session on pain relief.
13/01/2015 18/01/2015	27	Arthritis – challenging perceptionsSetting the record straight on arthritis, and practical tips on living with the condition.
20/01/2015 25/01/2015	28	Self-management: pacing and communicationLearning to manage pain with Arthritis Care’s self-management programme.
27/01/2015 01/02/2015	58	The Pain ToolkitLearning to live with it: a toolkit for self-management.

How to get support in regaining independence and the physical and mental health benefits of social exercise

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How can people left disabled and housebound by chronic pain be supported to live independently? Producer Paul Evans visits two Edinburgh-based organisations with different approaches to transforming the lives of people in pain.

Issues covered in this programme include: Independence, social exercise, exercise, mental health, isolation, welfare reform, disability benefits, depression, flare-up, back pain, fibromyalgia, social care, community healthcare, lifestyle course and peer support.

The Lothian Centre for Inclusive Living (LCIL) is run by disabled people for disabled people with the aim, as its name suggests, of helping people to live full lives despite their condition.

A key part of their service is supporting people as they apply for the benefits to which they are entitled in an often confusing and frustrating system. Jacqueline Todd recalls her struggle to be recognised as eligible for the Personal Independence Payment (PIP) and the freedom she has gained from adaptations to her home.

At the Thistle Foundation Paul speaks to members and staff about how their exercise and lifestyle classes bring people ‘out of the darkness’ of social isolation and pain. John Cunningham found the ‘supremely fit’ people at his local gym intimidating, but the welcoming and supportive environment has ‘changed [his] life dramatically’. Course leader Linda Douglas talks about the importance of finding a ‘safe space’ where people can focus on their strengths and find out what works for them.

Paul Evans: You’re listening to Airing Pain, a programme bought to you by Pain Concern, a UK based charity working to help, support and inform people living with pain and healthcare professionals. This edition has been funded by a grant from the Moffatt Charitable Trust.

Margaret Hendry: It’s not good for you to sit in the house, seven days a week, 24 hours a day, and speak to no-one and not see anyone.

Jacqueline Todd: Independent living – is everyone living the same? People with disabilities are able to have the same quality of life as people who are able-bodied. It’s our human right.

Evans: Chronic pain reduces the quality of life more than almost any other condition. One in four of us diagnosed with it will go on to lose our jobs and in just over one in five cases chronic pain leads to depression. It was the second most common reason given for claiming the old Incapacity Benefit. In this addition of Airing Pain I want to look at what help is available for those whose chronic pain has robbed them of their independence. The Lothian Centre for Inclusive Living – LCIL – is, as its name might suggest, in Edinburgh. Kirsty Henderson is its Information and Communications Officer.

Kirsty Henderson: It was set up by a group of disabled people who came together, who decided that they wanted to use direct payments as a means of having choice and control over their care and support. That was a relatively new thing that was happening at the time, direct payments. It was very much rooted in their experience and the organisation is still a user-led organisation. We’re a part of the independent living movement in Scotland, we work closely with other disabled people’s organisations to make sure that the voices of disabled people are heard at a national level, but we also provide a range of independent living services to support people to live independently in communities of their choice, regardless of their impairments as well.

My main role is co-ordinating the information service that we run called Grapevine. Grapevine is the Lothian Centre for Inclusive Living’s disability information and advice service – we’re the only specialist disability information and advice service in Edinburgh – we cover mid-Lothian and East Lothian as well. We were set up in response to the information needs that disabled people have – there’s so much information out there and disabled people found that actually trying to pick up what’s relevant, find stuff that’s relevant and accessible to them was very difficult.

Therefore, Grapevine was set up on the basis that it would respond to their needs, it would recognise their needs, and we very much work on the principles of empowering and enabling disabled people, and their supporters, so they can get in touch with us to find out what their rights might be, what their entitlements might be, speak to somebody who is completely independent and will give them that information on a free and confidential basis as well.

We provide information in a range of formats, so we have our disability information line; we provide – more so these days – information and advice online via email; we also go out and do outreach talks – talks in the community – and that’s quite an important way of actually informing people of their rights to certain entitlements: benefits, services and a way of getting people into LCIL services as well. But we work with from people from the point of view of them as an individual and finding out from them what their needs are.

Evans: What are the burning issues that people contact you about?

Henderson: In Grapevine, about 40% of our enquiries – and our enquiries have risen in this area over the last few years – have been in relation to welfare reform and benefit changes. People are concerned about what’s happening with some of the changes; people want to know what their rights are to claim these benefits; some people – and we’re really lucky that we have got some really good partnership work happening with some professionals who will actively encourage people to contact us and say you need to speak to LCIL about what you might actually be entitled to. So in Grapevine we can actually find out where people are coming from, what their needs are and say ‘Okay’… do a bit of a check to see that they are getting the help that they are entitled to…

And predominantly 40% of our enquiries are in relation to benefits. The main benefit we assess people with was Disability Living Allowance, but with that being phased out and the replacement benefit Personal Independence Payment, or PIP, as some people have called it, is now taking over from that, we’ve been helping individuals who have perhaps recently been diagnosed with a long-term health condition, or have recently been informed about our services and they’ve said, you know, get in touch with the service they can help you claim what you’re going to be entitled to – so we used to help people with their Disability Living Allowance claims, now we’re helping people with their PIP claims.

That’s been quite a challenge, I mean, as a service we’ve had to learn a whole new benefit, a new assessment as part of that benefit. Like the DLA forms the PIP forms are huge – they can take up to three hours actually to fill in – which is quite a long time, but our advisors, we are, kinda trained up and skilled in being able to ensure that we get all the information we need from people in order for them to make a successful claim and get what they’re actually entitled to.

Evans: Kirsty Henderson. Jaqueline Todd is a service user, champion and Grapevine volunteer for the Lothian Centre for Inclusive Living. She has fibromyalgia, arthritis and hypermobility syndrome. She told me how these conditions affect her life.

Jaqueline Todd: I lost my life, I didn’t have a life, in pain 24/7, couldn’t walk, I was practically bedridden – the depression that comes with that because your life has changed. I lost my partner of four years because he couldn’t handle my illness. Fibromyalgia has so many symptoms, but I think the worst one is chronic pain. It’s very difficult for people to understand, because it can be a hidden disability. I don’t want to say I look normal, because that’s not right [laughs]…

Evans: …I was going to say you look absolutely fine to me…

Todd: …picture of health!

Evans: How am I supposed to know that you’re ill?

Todd: You wouldn’t. Nobody would. But, you know, people should be treating others as equals and not just taking things for granted. There’s so many illnesses, people with impairments that are with chronic pain and are also… look there’s so many hidden things, and there’s no facts and figures to show, you know there’s lots of facts and figures to say, ‘so many people are in wheelchairs’ and ‘so many are this, that and the next thing’ – nothing for invisible disabilities. Which I think is a disgrace really. I don’t know how many times my GP has said to me, ‘you’re depressed’.

Well, yeah, I think you probably would be a bit depressed, I keep saying to my GP, ‘I’m not depressed. I’m hacked off and I’m hacked off because I want to do everything that I could do before. I don’t want to stay in the house. I want to go out.’

Now that social workers, etc. are involved, it’s a case of, ‘well, you’re only allowed your Community Amount to get you outside for eight hours a week’. Where’s the independence there? If I said that to them, you’re getting out of your house for eight hours in any one week – that’s awful.

Things have got to change. You know, if you can have a shower or a bath once every three days – do they only wash once every three days? People don’t understand and I think especially with people who are in services which are meant to help us – if they don’t understand, then…I don’t know. It’s just, disgusting. Absolutely disgusting. You have to meet the criteria; they don’t tell you what the criteria is; they tell you about the indicative budget – I looked it up in the Dictionary – it doesn’t make any sense to me, at all.

Evans: Indicative budget?

Todd: Yes. They’re not sure if there’s enough funds because of the indicative budget. Still don’t understand it. Now the SDS, self-directed support, has come into play, helping us all, wonderful thing. The champions have been helping to train the people who are training those in the council – social workers, Social Care Direct, but they’ve still not got the right answers. What does that say? I was told I would have to wait until next May before I could be reassessed. Why?

Henderson: You know, we can’t live on fresh air, people have got bills to pay, rent to pay, mortgages to pay and often that’s the priority for that individual when they first come into contact with us, so we can help them with that and get things in place for them so they can pay their bills and whatnot and then, if need be, if they have other requirements, we can refer them on to the likes of the Independent Living team who support people with care and support needs, can help them set up packages of care and support to use Self-Directed Support to enable them to live the lives they want to lead.

I should say, we’ve got quite a big training service within the Lothian Centre for Inclusive Living. All our trainers are actually disabled people themselves, so they have the experience; they have the insight of knowing what it’s actually like to live with a long-term health condition or impairment. So that’s quite unique. We train disabled people on how to become an employer of personal assistants so that they know what’s expected of them in their role. We also train personal assistants as well, so people who are employed by a disabled person as a PA can come on training to find out about the social model of disability; how to ensure that they follow the ethos of what independent living is about so that that they can enable that individual to live as independent a life as possible with their assistance.

Todd: I practically begged and pleaded at the tribunal. I told them they were very unjust and unfair. I told the GP that was interrogating me exactly what I thought of him and that he shouldn’t be a health worker at all, before I went out of the room in a dreadful state. And I shouldn’t have had to have went through that – no-one should. It’s disgusting. It’s a disgrace. People who have an impairment, like mine anyway, they don’t have the strength to fight. The people here at LCIL they were like ‘you’ve got to. You’ve got to go through it, it’s your right’. So I thought, right I will, y’know. And I did. But it wasn’t a nice experience, it was awful.

Evans: What support and advice do people need before going into an assessment?

Todd: They need to know what’s going to be expected of them. They need to know exactly what’s going to happen. Because you’re frightened. It took me maybe – after I’d had help here – it took me maybe three months before I actually had the guts to phone up – I wish I’d done it a lot sooner, but my Independent Living Officer kept saying to me ‘Go for it Jaqueline, you’re entitled to this’, you know? ‘You need the help, so ask for the help.’

Evans: For people who don’t live in Edinburgh who might be listening to Airing Pain, what advice would you give them?

Todd: If at all possible I would ask them to contact the nearest Centre for Inclusive Living, if there is one and get advice from there. Failing that, if there’s not, contact Social Care Direct, and be honest. You have to explain what’s wrong. A social worker then telephones you and you have to explain what’s wrong again. And then someone comes out to visit you and you basically tell them your life story and how you’re affected by things now. Then I had an OT, and Occupational Therapist, coming out to see me who was wonderful. I’ve got all these gadgets now: I’ve got grab rails in the bathroom; I’ve got a raised toilet seat; I’ve got a bed guard; I’ve got a perching stool in the kitchen; I’ve got a community alarm, so if I have a fall I can get in touch with them right away. Just having those appliances in the house has made a huge difference.

Evans: And that’s independent living?

Todd: Well it is yes, yes. Not sending the Re-enablement Team out to shower me and help me to make breakfast for an hour in the morning and then in the afternoon come and help me make lunch for half an hour – that’s not being independent, that’s being looked after. And I felt, you know, as though they felt sorry for me.

Evans: That could feel like being a burden.

Todd: Yes, very much so. You feel kind of unworthy in society and second best and the, sort of, lowest of classes.

Evans: That was Jaqueline Todd and you can find more details for the Lothian Centre for Inclusive Living on their website which is www.lothiancil.org.uk. The support she receives and gives there is practical and is key to managing the nuts and bolts, if you like, of living independently in what is, essentially, a bureaucratic society.

The Thistle Foundation, also in Edinburgh, supports people with long-term illnesses or disability to help them cope and regain some control back into their lives but from a different perspective. Linda Douglas is part of their Health and Wellbeing team.

Linda Douglas: We run lifestyle management courses for people with long-term health problems, or living in difficult situations. We also do one-to-one sessions for people. We have a gym and exercise classes and we can support people in the gym as well. We also run mindfulness courses.

Evans: And who uses it?

Douglas: Anybody who feels that it would be helpful to come here. People come with all sorts of different conditions and illnesses. I guess we mostly see people who live locally in Craigmiller, but we also see people from all round Edinburgh and, further afield, we run courses – in fact two of our team have just come back from running a course near Inverness for veterans.

Evans: And do service users have to qualify in some way?

Douglas: Not at all no. If they feel that this service is going to be helpful for them – and we usually meet them before they decide on what they’ll access here and talk about what’s available and a bit about our approach and the way we work. If they feel that something here would be helpful for them, then its open doors for them, yes.

John Cunningham: I’m John Cunningham. I come here for general fitness. When I first came here I could hardly walk, I was using a Zimmer. The one to one with a physiotherapist called Diana, who had me under her wing for nearly nine weeks before I was allowed anywhere near the gym, taking me through basic steps getting me back to walking. Honestly, I never thought I would get back to walking again without a Zimmer. Now I’m walking with a stick, the difference it’s made to my life is absolutely unbelievable and this place has been a bit of a god-send for me.

Evans: And what stopped you walking in the first place?

Cunningham: I used to be a postman and I was knocked down with a motorbike while I was on delivery. A young lad came down the pavement as I was coming out of a garden and ran into me and things just went downhill, I ended up being medically retired. I had a couple of people out from Leith medical centre, physiotherapists, and they were massaging my legs, feet, and suggested the Thistle Foundation would be a good idea.

I was a bit dubious about coming here to be honest, because I had tried a gym up in my local area up in Gracemount and it was people who were supremely fit and I felt totally out of place. I just didn’t like the idea of being there while these people were running, doing everything I wanted to do but I couldn’t so, and I felt a bit out of sorts about that. And when I came here I was a bit surprised at how easy everything was, how welcoming it was, how people treated you, made you feel welcome.

Evans: Gyms can be very, very intimidating places, for people who’ve never been to a gym – the thought of all those Lycra clad very, very fit muscular bodies and certainly for people like me that is intimidating.

Cunningham: It was very intimidating for me, the fact that I was on a treadmill at very, very low speed and getting a tap on the shoulder to basically say, ‘are you finished, can I go on that?’ And I just felt out of place there. It didn’t matter what I was trying to do, it was always people were supremely fit, physically fit and I just felt very, very intimidated by it and I just stopped going. And as I say, when I came here I was a bit apprehensive, thinking it would probably be along the same lines and I was totally surprised how different it was, how welcoming it was, how people went out of their way to help you. As I say, I’ve been coming here for five, six years now and the difference it has made to me is absolutely outstanding. My life’s changed dramatically since I came here.

Evans: In what way?

Cunningham: The fact now that I can get out, I socialise. I found before when I was stuck in the house I had nobody to talk to, it was just me and my wife and it came to a thing where we had nothing to talk about because we were seeing each other all day and basically, conversation just seemed to dry up. Now, it’s totally different, you’re going home with stories, people you’ve sat beside, they tell you things about what’s happening with their families and it’s a totally amazing place to come to. I mean people go out of their way, as I say, to make you feel welcome.

Evans: You mentioned the gym – it sounds to me as if the social side and the support side is as important as the physical side.

Cunningham: Oh it’s very important, yeah. You’ve been at work before, where you socialise with your friends and when I was retired that was all taken away from me. And the fact that I had to stop work that I couldn’t get out, I really thought my life was over. Depression was something that I’d never heard of, but when all this happened, I felt a kind of depression, and it was unbelievable how everything just seemed to get on top of you, whereas now, completely different.

Hendry: I’m Margaret Hendry and I’m a volunteer at Thistle Foundation.

Evans: So, why did you come here in the first place as a client?

Hendry: I came here to, what was called at that time a ‘back class’, because I’ve got chronic problems with my back. And anyway, I went through the class and then I went away and I decided, no, I can do all that myself at home, so I just didn’t bother. And then eventually I did come and started coming to classes that other people where in – I did the lifestyle courses, the gym-based ones and I did ‘Branching Out’.

Evans: What’s a lifestyle course, what is lifestyle?

Hendry: It’s a different way of looking at the way you’re leading your life and looking to see the changes you can make. It’s showing you a different level, if you like, of what you can gain from life.

Evans: Can you give me an example, from things you might have learned?

Hendry: Things I learnt – it’s not good for you to sit in a house, seven days a week, 24 hours a day and speak to no-one and not see anyone. It helps you to come into a group and just come and sit among other people – if you don’t want to speak, that’s fine, don’t speak – just come and sit.

It shows you that you’re not on your own, that no matter how you feel there is always someone there who can help you get a wee bit better. And it won’t happen overnight; it won’t happen maybe in a week, but it will eventually happen, and those people are there and bring you out of the darkness. Because that’s all it is, it’s just a big, dark hole, and the further you go down that dark hole, the harder it is to get out of it. But come to Thistle Foundation and someone will help you get out of that hole. And that’s what I did.

Evans: One thing that occurs to me about being in a group of people with similar conditions – that it could degenerate into moaning sessions.

Cunningham: That was a thing that never happened. People wouldn’t say, ‘this has happened to me’; ‘this has happened to me, why’s this happened to me?’ We never actually had anything like that. Someone would always say ‘well, what happened to you?’ And you told them your story and they’d be, ‘Oh, I’m sorry to hear that’, things like that and then they’d maybe tell you a wee bit about themselves.

But it was like everything else, nobody opens up right away and tells you everything that’s happened to them, you get wee bits and pieces and as the group goes on you do form a social group, you start talking about things, everyday things, and then family life comes into it, but I’ve not heard anybody saying, ‘Oh God, I wish I hadn’t come here’ or ‘this is boring me, or that is boring me’… I’ve honestly never experienced that in any of the groups I’ve been in.

Hendry: I found, when I started coming in here exercising, it took away the pain. It didn’t add to the pain, it actually took it away. You actually went out as if you were bouncing – you’d maybe come in really, ‘urrrrggghhhh’, but by the time you’d exercised, you’d met different people, you’d taken the time to have coffee, a blether, whatever, you actually floated out, you float out on air. And the exercise gets an awful lot easier and your pains get an awful lot better. They never go away, but they’re easy enough forgotten.

Evans: And the advantage of a place like the Thistle Foundation is that with a pain management course or therapy – it stops. This continues.

Hendry: As long as you want to be a member here, yeah.

Cunningham: See, I’ve found in the groups that I’m in as well, everybody enjoys being here; they actually look forward to being here. And if they’re ill, they miss this place, they’re desperate to get back and that is something that’s totally amazing, that people are like that where they’re into a thing that they thoroughly enjoy. And if they do miss it, they come in and they say, ‘Oh my God I’ve missed this’, or they’ve been on holiday, they say, ‘I’m glad to be back, I’m glad to be back in the group’. And it’s an amazing experience, the fact that people from all different walks of life are coming here.

Evans: Lots of our listeners will not be in Edinburgh, they’ll be throughout the UK and throughout the world, what advice would you give them to find a place like this?

Hendry: I wonder if I described our approach, the way we work, if that might help people to source the right kind of help, because everybody’s different. As Margaret says, we have a non-expert approach, which means that we don’t believe that we’re expert in other people’s live, so we don’t advise or tell people what they should do or changes they should make, but I guess, rather we create a space where people can find that out for themselves. We do focus on things people are already doing that’s helpful, that’s working, so they can build on that, or if times are particularly difficult, how they are getting through it, how they’re coping with it. And so really we’re focusing on people’s strengths and their resilience I guess.

If people find the ways they’re coping are not helpful, which is sometimes the case, then perhaps they might want to do something different and that’s where, on the lifestyle courses anyway, we explore different lifestyles skills, self-management skills, if you like. Maybe that’s where they will find something that’s more helpful, that they can put in its place. So our focus is on what’s working – if it’s working, do more of it – if it’s not working, do something different.

Evans: How important is it that people with chronic pain, your clients, seek medical advice before jumping into the gym?

Hendry: We’re not medically based and so, as with any gym, if they’re going to join the gym, do a basic health questionnaire and if there’s any information we need further, or advice from their GP, then people are encouraged to do that. But we really encourage people to pace themselves and listen to their body and it’s important not to push through pain barriers when you’re exercising, so underdoing it initially is probably a good way to start and building up slowly from there so you don’t exacerbate the pain.

Evans: That’s easier said than done.

Hendry: I know. We never said it would be easy and I guess that’s one of the topics we look at in the lifestyle management courses – pacing.

Cunningham: Pacing is a thing I find very hard. It’s a small word, but it’s a very, very hard to get your head round. I used to have a lot of problems with flare-ups. I used to go every month, bad flare ups, couldn’t move, everything would seize. GPs had to come out and give me injections, muscle relaxants, to help me get back into a routine.

Over the last four years, I’ve not had one flare-up through the gym work, just coming here and the difference that’s made to my life is amazing, to my family life, even my family notice the difference. It just shows you that putting in a wee bit of work and effort, it does help you in the long run. You’re doing the treadmill, the exercise bike, a wee bit of weights and it’s amazing how a bit of exercise can make your life so easy.

Evans: John Cunningham. And I just have time to remind you that whilst Pain Concern believe the information and opinions on Airing Pain are accurate and sound, based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person that knows you, and your circumstances, and therefore the appropriate action to take on your behalf.

Don’t forget that you can still download all editions of Airing Pain from our website, its painconcern.org.uk, or you can obtain CD copies direct from Pain Concern, and the website for The Thistle Foundation is www.thistle.org.uk.

Last words to Margaret Hendry at The Thistle Foundation…

Hendry: You don’t have to pay hundreds of pounds for a pair of trainers; you can get the cheapest sand shoes, whatever. You don’t have to spend pounds and pounds on Lycra and you come in and wear what you’re comfortable wearing, as long as you’ve got really good, decent footwear that’s all you need. You’re not only helping the pains in your body, it’s like bringing the whole person out. You’re not just getting rid of feelings that you can actually feel; it’s your mental health as well as your physical health. And this is the most wonderful little nest egg. And if I start talking about Thistle Foundation I go on for hours and hours and hours so I’m gonna stop now, because I’m just so passionate about this place.

Contributors:

Kirsty Henderson, Information and Communications Officer, LCIL
Jacqueline Todd, service user and volunteer, LCIL
Linda Douglas, lifestyle management course leader, Thistle Foundation
John Cunningham, member, Thistle Foundation
Margaret Hendry, volunteer and member, Thistle Foundation.

More information:

photo of the petition on pain leaflet — #PainPetition campaign leaflet

I am never asked how my pain is by my GP even if I go about my pain. When I see my surgeon it is usually because I am suffering and he asks me where the pain is and what type of pain but there is no pain measurement and he rarely touches me which I find surprising!
Chronic pain patient

Is this something you experience when you visit your doctor?

How would you feel if next time you go to see your first-contact doctor they ask whether you are in pain and what effect this has on your daily life? Would you feel more assured that your pain is managed and treated more effectively if your pain was measured regularly and the results recorded and included in a pain management plan? Do you feel asking about pain should be as routine as taking a temperature or blood pressure?

Jean Gaffin, Pain UK’s Pain Champion for 2013, thinks each of these questions should be answered YES. Jean has started an online petition calling for the UK Department of Health, along with organisations responsible for setting standards of care, to improve the way people in pain are treated.

You can sign the e-petition by visiting the following link: http://epetitions.direct.gov.uk/petitions/58377

Follow up the campaign on Twitter using hashtag #painpetition

Jean said: “Many people living with chronic pain suffer in silence – even when talking to their doctor or other healthcare professional. People in pain may find it difficult to talk about it when they are with a health or care professional. Patients should be asked whether they are in pain, and how it affects their daily living. Pain should be measured and the results recorded and included in a pain management plan which would include self-management.

If asking about pain was as routine as taking a temperature or blood pressure people living with chronic pain could be helped routinely and regularly to manage their pain and have it treated effectively instead of suffering in silence.”

Pain should be measured regularly. In asthma patients the respiratory flow is measured and in diabetes, blood sugars are measured, so why is nothing measured for pain patients?
Chronic pain patient

The petition needs 100,000 signatures to be eligible for a debate in the House of Commons and 10,000 signatures before it will prompt a response from the Government. So far, 2,130 people have added their support , however we are aiming for as many as possible. The petition closes in December.

Jean added: “There are over 14 million of people in England who live with chronic pain, and if each of them signed the petition the UK government would receive a very clear signal from the pain community. We’ve only got 4 months to move it closer to the required number of signatures. We are therefore asking you: please join us in supporting this important cause, sign the petition and pass on the word. Let’s take care of the UK pain services and shape the way we want to have chronic pain treated.”

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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

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