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GP’s surgery, telephone call or pain clinic: where should pain management take place?

To listen to this programme, please click here.

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

‘Good pain services, based in the community will make a huge difference to the lives of individuals and the NHS’, says Sue Beckman, speaking on behalf of the NHS’s Delivery and Support Unit at the Welsh Pain Society Annual Scientific Meeting. But what does moving pain services into the community mean?

Beckman, together with pain specialists Mark Ritchie, Mark Turtle and Rob Davies debate the key issue of where pain management should take place.

General practitioners (GPs) are often those closest to ‘the community’ – they often see patients over the course of years, but limited training in chronic pain and lack of time in appointments pose problems. The panellists also discuss the challenges of bringing services closer to the isolated communities of rural Wales, while ensuring that as many people as possible can access pain services by public transport. Finally, could moving services away from the pain clinic ‘de-medicalise’ chronic pain by causing healthcare professionals and their patients ‘to think outside the box’?

Issues covered in this programme include: Community healthcare, GP, telephone consultation, remote/rural communities, small communities, primary care, secondary care, patient and staff travel, policy, multidisciplinary approach, funding and economic impact.

Paul Evans: You’re listening to Airing Pain, brought to you by Pain Concern, a UK based charity working to help, support and inform people living with pain and healthcare professionals. I’m Paul Evans, and this edition has been funded by an ‘Awards for All’ grant from the Big Lottery Fund in Wales.

The Welsh Pain Society (Cymdeithas Poen Cymru) holds its annual scientific meeting each autumn, and for a country that’s how can I put it? geographically challenging, it’s an invaluable opportunity for people working in the field of pain in Wales to get together, discuss best practice and yes, pain politics and ultimately create a better service for the patient. Its Chair is Dr Mark Turtle, consultant anaesthetist specialising in pain management in Carmarthenshire. And at this year’s event I asked him whether the prevalence of chronic pain in Wales is any different to other countries in the UK.

Dr Mark Turtle: There is nothing which would suggest that the prevalence in Wales is any different from anywhere else somewhere between upper teens and lower twenties in terms of per cent. What might be different, and one of the things we have been discussing in the last day or so, is the impact on individuals, how different people cope with pain. For example, we had a lot of talk about people in the valleys, people in certain areas in south Pembrokeshire, where perhaps they’re encountering considerable social difficulties, whereas people in other areas of rural Wales, for example, cope in a totally different way. So it’s not so much the prevalence of the problem, but the way that people cope and deal with it which might be…certainly it is an issue that has to be taken into account.

Evans: From the patients’ point of view, do patients around Wales, from different areas of Wales, have more or less difficulty than their counterparts elsewhere?

Dr Turtle: In accessing services…

Evans: In accessing and knowing about services.

Dr Turtle: Yes, yes. I think that one of the things that actually has come across quite strongly in the last day or so is the disparity between different areas. Both in terms of overall service so there are one or two areas where people will have to travel a heck of a long way to get any sort of services and there is also what that service is made up of. It is quite interesting. For example, somebody showed us an audit of the services, and Powys, which is a very sparsely populated area, it has got very good services in some respects, even though they are not centred round a major District General Hospital, for example. There are areas such as Ceredigion for example, where there are hardly any services at all. There are different clinics, which have different spreads of different disciplines so the make-up is different.

Then we’ve also hardly scratched the surface to look at the relationship between the services available and the actual population size. So for example, nothing seems to have taken to account that in a particular area the population may be very large and therefore the services ought to be a lot better. Now, that is even before we start looking at how people access them, how they are publicised, for an individual how they know what there is to access and that’s certainly something which needs more work.

Evans: Dr Mark Turtle. Well, the focal point of the day was a session devoted to that very topic in which a panel of three prominent health professionals in the field of pain explored issues around community pain services. The panellists were Dr Rob Davis, a specialist in pain management in Cwm Taf Health Board, Dr Mark Ritchie, a Swansea GP with a special interest in pain, and Sue Beckman of the Welsh Government Delivery and Support Unit.

That was established by the Welsh Assembly Government, referred to later as WAG, to assist NHS (National Health Service) Wales in delivering its key targets and level of service. Another term or acronym here mentioned is QOF, or Quality and Outcomes Framework. This is an incentive scheme for GP (General Practitioner) practices in the UK, rewarding them for how well they care for patients across a range of areas through a points system. Put simply, the higher the score, the higher the financial reward for the practice. There is no QOF for pain. So with all that jargon behind us, let’s join the debate. It’s chaired by Dr Mark Turtle.

Dr Turtle: We have picked three people who are confident, not couch potatoes, so I hope that they will chew this debate with vigour. Sue.

Sue Beckman: Thank you Mark, and thank you very much, I feel quite privileged being here, actually, to be honest. It is quite exciting this is, and to be considered that I might be somebody who would know about pain I also find quite flattering, because if you’d asked me a few years ago about the importance of community services for pain I wouldn’t have had a clue. I’m a diagnostic radiographer by trade – I’ve X-rayed many people in my time who are suffering from all kinds of conditions and terrible pain. But not once I think – and I’m ashamed to admit it not once I think had I given much thought to how they access control of that pain in their lives.

And there are only really two things that have made me think about it in recent years. One was the focus on work that we did from the delivery unit and I am sorry that it is couched round orthopaedics, but that became our only vehicle to do this. One was the neck and back pain, when suddenly my eyes were opened to the importance of pain for people in this scenario, suffering with neck and back pain, and what pain actually does to people, which I hadn’t given much thought to before because I have been fortunate in that I do not suffer much myself. The second is watching my mother on a daily basis struggle with her pain and not be able to access the kind of pain control that I would love that she should have.

So those two things made me really think. Now you would have thought that would’ve been obvious so that made me think, ‘Well, if it is not obvious to you Sue, who else is it not obvious to?’ And I have to say that sadly it is not obvious to a lot of people, which is why I think probably we have not had as much investment in pain services in the community that I am sure all of you folk here would like, and actually I believe very passionately that good pain services based in the community will make a huge difference to the lives of individuals and will have a very positive and cost-effective effect on the NHS as a whole.

Twenty-eight million pounds I believe was quoted to me as the cost in neck and back pain in prescriptions alone for Wales. I think that is well worth thinking about and aside from that, think of all the people who very quickly could access something that makes their quality of life so much better than it currently is. So, on that basis alone, I rest my case that they’re a really important thing to push forward.

Dr Turtle: Thank you Sue. Rob.

Rob Davis: Eighty per cent of all medical (with a small ‘m’) contact that patients have with clinicians across the board, 80% of all contact has pain as an element in it. Now put that against 0.9% of the time spent as an undergraduate is pain training. So I think there is a big ask here. The whole idea of actually moving pain into the community, in terms of the service that we deliver, we have got to ask a huge number of questions. What we mean by moving pain into the community? What is the community? And do we really want to lose all those places and people that already provide a service? So I would just like you to think about those two questions: What is moving pain into a community all about? Who do we deal with? Where do we deal with it? And how do we deal with it?

Turtle: Thank you. Mark.

Mark Ritchie: What is pain? To me pain is not the lovely textbook definitions we get, but it is what the patient tells me it is at the end of the day. And Rob very succinctly put that 0.9% of training is in pain. He is right, that’s including acute pain, that’s not chronic pain. When you look at chronic pain in undergraduate training in this country in medical professionals, it’s between 4 and 6 hours depending on which university you are lucky enough to attend. Considering that, I think our general practitioners probably handle pain pretty well, considering the little training we have bothered to give them.

If we could spread that training a bit more, then it could become more community based, but that should by no means mean that we throw away our secondary care colleagues or throw away those secondary care clinics. They are still going to be needed to some extent but it is how we interact that with a good community based service. And I think it should be an interactive and interlinked service, not community verses a secondary care: I think it needs to be interlinked.

Turtle: Ok, thank you very much. Those are the opening stalls of our panellists. Now let’s see if we can perhaps challenge those views or get them to expand a little bit with some questions. The first question I have got here is: ‘On its own is not the most efficient way to treat chronic pain in a multidisciplinary, a multimodel service model? Patient access, transportation, clinician access to imaging results, team communication when spread out over a population area how can we overcome these problems?’ Rob.

Davis: OK. Taking the second point first: the distribution of the population that we are dealing with and the ability to actually get staff together suggests that we need a base to work from. We have done clinics in GP practices where consultants have gone out to the practices you end up travelling a long way, maybe seeing three patients. So it makes the case for me to have a base and bringing the patient to that base. And then there is the question about, ‘OK, how do we get them there?’ The issues of transportation, the issues of car ownership, and deprivation indices all come into that.

Patients, if they have a hospital on their doorstep, they would like to be able to use that hospital for everything. And this is what we found moving into one of the community hospitals because our existing hospital was on a recognised bus route, it was close to the motorway, people knew where it was, people could get there. For quite a while I had complaints from patients turning up saying, ‘What are you doing it up here for? We can’t get up here, there are no buses to get up here.’ It is an important point to think about if you are going to move things into the community that is fine as long as it is local for that particular patient. If you have a big catchment area you have got to think strategically in terms of where you are going to base part of the service.

Turtle: Mark.

Ritchie: I would not want to denigrate that potential issue at all. However, there are very strong advantages of being closer to where the patients are. Some of those advantages are, we can start de-medicalising this problem, and as we see when we go to the British Pain Society… the last British Pain Society meeting I went to, something like half of all the lectures were no longer about drugs. They were on psychology, they were on physiotherapy techniques, they were on physical techniques rather than pharmaceutical techniques.

A lot of these patients when they come into a hospital setting believe they have come for another injection or another medication. I am not going to ‘poo poo’ those treatments at all; where they are appropriate they should be used. But what I am going to say is that if we move this out of a hospital setting, people start to think out of that box, and they start to think about a wider and more diverse approach to their problem, and we have certainly seen some pretty good results.

Turtle: Sue.

Beckman: The word ‘community’ I can say for a fact that this is absolutely right, there is now a dichotomy of the way we talk and I am as guilty as anybody else. I say, ‘Are we talking about community care or secondary care?’ Actually I’m going to stop doing that and I’m going to start saying secondary care and previous primary care is now the community of treatment that we have. And I think what we need to do about this question is we need to say, ‘Well, what does our population look like? What way have we got in the vicinity? And what is the best way to provide those services?’ So it isn’t one size fits all. It isn’t the old-fashioned outpatients/GP scenario. It is, ‘There’s our demographics, that’s our rurality how are we going to manage that?’ Now, that will take some quite clever planning and I am jolly sure, when we do it, make huge mistakes – but we’ll get there.

Turtle: Just to take this on a little bit further, and then Mark I will let you in, can I just point out another question which actually really links in very closely to what we are talking about here. There seems to be an ongoing debate as to what community actually means. What does the panel regard community to mean? Patients’ homes? GP practices? Medical centres? Peripheral hospitals? District general hospitals? etc., etc., etc. … Until we resolve this, the way forward remains somewhat difficult.

Ritchie: All of the above.

Davis: I think it is all of the above, but what is interesting is service within five days. There is no way you are going to get that in any hospital arranged treatment, unless it is an emergency treatment for quantified symptoms. But, having said that, so where is that treatment going to come from? It is going to come from a general practice and that merely pushes forward what I was saying earlier; we need to educate our practitioners at undergraduate level so that they all to some extent can deal with these problems, so that we do not have the massive problem arriving in so-called clinics, whether they are community based or in a hospital.

I think, what is community in this case? It is all of things you have mentioned. How we embrace that community is how we pull those different things together. And yes, maybe we are going to need to pull in different technologies, whether that is Skype, the internet, telly conferencing, whatever all of those things become possibilities. They will only become possibilities of course with money. So it is going to be a case of balancing the accounts and deciding how we can give our community total community now the best service with the amount of money we have available. That of course is going to be something for the politicians and for our pay masters to sort out.

Ritchie: Can I come in with a point about telly medicine and the rurality issue? I think that what we have to recognise in Wales is that there are, if you like, areas of Wales where the solutions will be different. We also have to look at that fact that deprivation has an effect; you are not going to effectively use telly medicine where you have got people whose reading age is six and their ability to assimilate a piece of medical information is questionable at best. So you are going to be dealing with face-to-face description and explanation for people like that they won’t get to you over Skype.

Turtle: Can I refer to another question at this point here? ‘It does not appear currently that there is overwhelming interest in managing pain outside a medical model in primary care. Is this reasonable? And if not, how do we change the engagement of fellow health professionals who work outside hospital practice?’

Davis: I’m going to stand up and be controversial. I find it difficult to engage with many of my colleagues in primary care. They have a 10 minute appointment system, dictated to by the government, which says you have to see 6 patients every hour, and if they reduce the number of patients that they are seeing, they then tell them they are not seeing enough patients. So for a start we have got this model which is dictated to by the state saying you have got to see so many patients every hour that is the first problem. The second problem is which is a solution in many areas is QOF and QUIP as they now call it as well, where we are trying to raise standards, but there is not a QOF for pain. So what happens is the concentration of general practice goes into where there are QOFs.

I am not surprised there is not a QOF on pain because it is such a large and vast area, that the money that would have had to be put into it would’ve been considerable. So that is probably why it has been avoided up state. But the problem is that they are focusing their attention on the areas they have been told to focus their attention on, and also where the money goes. It is amazing how well diabetes has done since QOF came in. Diabetes has done magnificently and we are getting really good results in diabetes because the money has been put into that direction and the results have followed.

I don’t believe enough money has been put into pain. I do understand there are limitations of a budget, I am not an idiot who believes that there is a limitless or bottomless pit, but what I do think we are going to have to do is we are going to have to be a little bit more diverse in how we approach it. One way we can get into general practices is when we mix pain in with something else. So for instance, if we look at something that has been sold well to the general practitioners like diabetes, if you give a lecture, or a lecture is given which can be sponsored by industry or whatever, on various different forms of diabetic control, and you bring into that same lecture neuropathic pain, and maybe erectile dysfunction; by bringing those three things which are all relevant to diabetes, you suddenly capture the audience’s interest.

Turtle: Can I just pursue a little bit with the QOF business. A lot of people talk about the QOFs and of course people working in secondary care don’t fully understand all that. It seems to be expressed by a large number of people that know QOF for pain is a problem. Do you agree with that? And is it something that stands any chance of changing?

Davis: Whether there should be a QOF for pain, I mean ultimately government will debate that for a while yet to come. What does QOF do with any diseased area within a practice? What QOF does, is the first thing is, you have to draw up a register of all the patients who have that problem. So in diabetes, you had to create a diabetic register, so it immediately tells you how many patients in your practice have diabetes.

At the moment there is no such register in pain. So the general practitioners have no actual way at the moment of coming out and saying, ‘This is how many people we have with acute pain and this is how many people we have with chronic pain’. So if nothing else, if that was the only bit of QOF that came in, if they just said two points a year for creating a register showing how many people have pain that has been ongoing past the time of normal repair, past the 12 week mark. Even if they just did that, it would be a massive starting point because it would at least give us an idea of the size of the problem for budgeting for the future and for the provision of clinics.

Turtle: I want to get Sue’s opinion on this as a non-doctor, and to tease that out I am going to just quote this question here: ‘Having been on secondment for my secondary care paying service to set up a community service, I have worked with GPs and I have been exposed to their systems. It seems to me that it is still a huge divide between primary and secondary care services. How do we see that we can get these two camps coming together?’

Beckman: Thank you Mark. Well, just listening with great interest to that. It is lovely to hear a group of really enthusiastic people who want to see things change, and I am going to ask you a question: Does anybody know whether the commissioning directives for chronic non-malignant pain that were devised in 2009 have ever been rescinded?

Turtle: They have not been rescinded.

Beckman: No. Excellent, they have not been rescinded. Can I take just a moment to remind you of what some of them say? They actually say that by March 2009 planners and commissioners will ensure that plans to reconfigure existing secondary care pain specialist services, based on assessment of local patient needs, are established, to ensure patients with complex CNNPR triaged are referred to appropriately using evidence-based care pathways. Now there are actually three or four of those that go on to explain what the aim of all of that work was. Now, we must not lose that work, and I think somewhere along the way we have kind of lost that a little bit.

Now, if I am not mistaken and this is one of the last times I am going to use this Rob primary care and secondary care are now embraced in local health boards. So we should be using these directives to encourage local health boards to start to put in place those kinds of services. That is what we should be doing. I am coming from a more strategic approach than my colleagues, who are actual clinicians, are coming from. Mark, do not look at me when you mention budget, it frightens me! Because this is why I say to people, ‘Don’t please, I’m not from WAG, I am from the NHS. OK. Not my responsibility to set the budget!’

[Laughs]

Davis: Sorry.

Beckman: It’s OK, it happens all the time and that is why I was keen to mention it. So we straddle that for you and I have been looking for a way in now for a while, because certain things happened, which I do not need to talk about in WAG, about how the chronic conditions work, and it has come to a stalling point. And I am going to go back and find a way in again. I have tried several ways in because clearly, as you said, back pain… massive. Back and neck pain is my zone on focus on and I am desperate to see how we can get that right, sorted out with a proper community approach to it. So do not forget about these guys. You need to be asking your health boards, ‘What are we doing about these directives that came out? Where is my role in them? How are we going to take this forward, because they are four years behind.’

Turtle: Yeah, that was a point I was about to say.

[Laughs]

Turtle: I mean, I think this is the problem that those words have appeared and many of us have contributed to those words. But you used the word ‘stalled’.

Beckman: Stalled, yeah.

Turtle: And that actually is the problem, isn’t it? The process has stalled.

Davis: We should not be surprised about that because I was just looking for the actual date that this was signed off. You know, the actual document was generated in June 2008. We have had a financial maelstrom hit the health service so it is hardly surprised that we have stalled on this. There have been a lot of things that have been deemed to be more worthy, maybe that is because we have not shouted loud enough, but things have stalled financially. There has been no money to pump prime a lot of things. We have had to do things on a shoe string and the reason that I am the only representative from my health board, is that the rest of them are having to make sure that they are in work because future funding is predicated on certain requests and demands that have been placed on us by politicians to actually fulfil this document.

Beckman: Can I just pick up on that point? I think that is a very good point that you raised Rob. I think one thing that we are not very clever at doing all of us, and I include myself in this, though I have tried on occasions, it was very hard is actually really emphasising the economic element of it. We do not like talking about finances, do we, because, you know, it is not our first port of call. But sometimes we have to, because if that is what is driving us at the moment then we have to prove why the pain agenda is so effective financially. And we are not, unfortunately, at the moment, too clever at doing that. So if anybody is, please help me because I would love to do it.

Turtle: Right, I am just going to throw a spanner into the works. Of course actually the problem is disinvestment and we all know that buckets of money are thrown at things which are worse than unhelpful, a post to dismantle. Until we master the disinvestment thing, we are not going to move forward.

Beckman: It’s a case we have tried to argue from the delivery unit’s perspective a number of times. If we can avoid some of the burden of pain on the prescription, for Wales that is a direct either redirection of money you are saving, because we have free prescriptions. If you were arguing this in England it would be a different debate, but here that is a direct saving of money because we have free prescriptions.

Now you are clearly not going to save £28 million but you may well save a quarter of it, which would be a massive amount of money. So the more help we can get on trying to explain this and get this financial element worked out would be gratefully received. Remember, it is only neck and back pain the figures I have quoted, only neck and back. For North Wales, the prescription cost that is all we’re talking about here is quoted at £6.4 million.

Turtle: OK Mark, did you want to reply to that?

Ritchie: I wasn’t suggesting there were not ways we could find a list of these patients. What I was aiming with saying would be useful having a QOF register, is it would highlight it for each GP individually because they have to… with the other QOF you have got to put somebody as lead for diabetes, etc. As soon as you have created a QOF in pain, somebody in the practice would have to be a lead for pain, and therefore somebody would need a bit of education within the practice for pain and so it would spread the word that way. So, I was not meaning we could not find the data, and I am sure if we searched we could find it. As regards to pretend you cost savings from prescriptions, they are astronomical.

A few years ago before we became a joined trust, Swansea made a very considered effort to save money, and I remember when I was prescribing leader in my practice for seven years, and when I first took up my practice we were prescribing 44% generic. By the time I left, when we were in the top three generic prescribers for Swansea, and in the last year that I ran the budget for my practice on prescribing I saved £330 000 from my budget of which not one penny went into chronic pain, and that is the problem.

We can get people involved in saving money but if they are not going to see…If they are going to see that money disappearing into a mass called the trust and vanish into orthopaedic surgery or something, then it is going to achieve nothing. If I look at our own trust at the moment, I know of one patient who is costing £4000 a month and I know that there are about 50 of these across the trust, and the patient in question has lower back pain and uses 18 800 microgram fentanyl lollies a day. Work that out quickly money wise, and you will find that it is about £4000.

At the moment if I managed to change him, not a penny of that would come into the chronic pain budget, but quite frankly that is what I would like because I would like to set up a separate clinic once a week to see just those patients. Take their prescribing away from that poor GP who has been landed with that horrible prescription. Take it away from them and let’s convert that patient onto appropriate medication that won’t destroy his teeth and may well help him with his back, and at the same time save about half a million a year, because that is the potential, just on that small group of patients within our trust. So, and I am sure that there are similar patients out in yours, unless we are the worst trust around.

Turtle: Now, time is pressing. I have just got one more question and I am just going to give each panellist the opportunity to give two or three sentences, and then I am afraid we are going to have to call it to a halt.

Evans: I am just cutting across before we get to that final question because there is just time for me to say thank you to all those who took part in that debate at the Welsh Pain Society: Annual Scientific Meeting. That’s Drs Mark Turtle, Rob Davis, Mark Ritchie and Sue Beckman, and I will be following up on their theme in the next edition of Airing Pain when I will be joining a community pain management programme in the largest, yet most sparsely populated, county in Wales.

I will just remind you of 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 judgments available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you, and your circumstances and therefore the appropriate action to take on your behalf.

All editions of Airing Pain are available for download from Pain Concern’s website and CD copies can be obtained direct from Pain Concern. All the contact details, should you wish to make a comment about these programmes via blog, message board, email, Facebook, Twitter or pen and paper are on our website, which is painconcern.org.uk. So with all that said, here is the final question.

Turtle: How do we engage with primary care to enable progress towards community-based service? Moving current secondary care services to a community is only part of the issue, but in order for secondary care to concentrate on the most needy there is a need for earlier care of patients presenting with pain. How do the panellists think this could be addressing pain problems early?

Davis: We have to train the staff working at that stage in the patient’s journey. We need to give them the necessary academic tools to deal with it. We need to give them the necessary skills and confidence to deal with it. It is a training issue.

Ritchie: I agree with Rob in that it is a training issue, but I think it is more than just a training issue for medics. I think the training needs to start with our population. We need to be speaking to our patients out there and encouraging self-management to a large extent. The only way we are going to do that is by patient education as well as doctor education. Ultimately, though I agree education is going to be the answer so that a larger portion can be handled at a lower level and then move up to the ones that really do need to be in secondary care.

Turtle: OK, Sue.

Beckman: I think the education debate is fantastic and brilliant, but I would like to combine the education with that new sense of community so the education is where it is needed. We do not have those artificial boundaries anymore, but let’s have the right people in the right place, wherever that is.

Turtle: Thank you very much Sue, Rob and Mark and thank you very much audience. I am sorry we can’t go on any longer.

[Applause]


Contributors:

  • Mark Ritchie, GP specialising in pain management
  • Mark Turtle, Consultant Anaesthetist, West Wales General Hospital
  • Rob Davies, Consultant Anaesthetist, Pontypridd & Rhondda NHS Trust
  • Sue Beckman, Welsh Government Delivery and Support Unit.

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This Wednesday, we are co-hosting a Twitter Q&A with The Painful Truth, answering your questions about chronic pain, especially regarding living with pain in the festive season.
The Painful Truth is a collaborative campaign to raise awareness of chronic pain and the need for innovation in chronic pain management – supported by Boston Scientific. 100cm sex doll

Tweet your questions on the hashtag #PainQA and we will answer them between 1pm and 5pm on Wednesday the 11th of December.

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Peer Support. Join the community

“Having chronic pain is very lonely.”

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Talking to representatives from a variety of pain organisations, including the Trigeminal Neuralgia Association, about the wide-reaching impact that pain has on society

To listen to this programme, please click here.

Christine Johnston heads to Brussels to investigate the impact that pain has on society as a whole at the Societal Impact of Pain lobby group’s fourth annual event. She talks to Neil Betteridge of Neil Betteridge Associates which promotes a holistic approach to pain management. Betteridge explains that early intervention is beneficial not only for the patient but also for employers, as it leads to faster, more effective treatment and less time spent outside of the workplace. Jamie O’Hara, who works with Adelphi Real World and the Haemophilia Society, discusses the results of a survey carried out about the effect pain has on society, which found that those living with chronic pain and their carers experience disproportionately high levels of unemployment.

Christine also speaks to Jacqui Lyttle, an Independent Commissioning Consultant, who criticises the current care given to those with chronic pain conditions, citing wrong diagnoses and the subsequent delays in accessing effective treatment as the main issues. She explains that pain management costs more when it’s not managed effectively than when it is, both in terms of money and in working days lost through illness.

Paul Evans then meets Jillie Abbott, the Projects Officer of Trigeminal Neuralgia Association, who describes the organisation’s attempts to raise awareness of the little-understood condition within the healthcare profession, citing the high frequency of misdiagnoses and ineffective treatment as the motivation for this educational focus. She also shares some coping mechanisms that can help those living with Trigeminal Neuralgia and emphasises the need for better communication between people living with the condition and healthcare professionals.

Issues covered in this programme include: Trigeminal neuralgia, orofacial pain, holistic approach, workplace, employment, misdiagnosis, communicating pain, raising awareness, stigma, patient experience, discrimination, social support, the biopsychosocial model, economic impact and carers.

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

Now, the Societal Impact of Pain (SIP) is an international platform with the aims of raising awareness of how pain impacts on our society’s health and economic systems. Their fourth annual event took place in Brussels back in May 2013 and the delegates focused on topics previously agreed in their roadmap of action, one of which was European best practices for the reintegration of chronic pain patients into the workforce. Pain Concern’s Christine Johnson attended the event to gain a UK perspective.

Neil Betteridge: My name’s Neil Betteridge, I’m at the SIP meeting representing my own company mainly, which is Neil Betteridge Associates, a patient consultancy. But I’m also, in the UK, the vice chair of the Chronic Pain Policy Coalition, which works with most organisations in the UK with an interest in pain, including Pain Concern.

I think there is a general lack of awareness amongst, I suppose, society generally and employers specifically really, and lack of awareness about issues like the importance of early intervention. I think too often there’s a kind of stigma associated with pain; people are often reluctant to mention it, of course its invisible, it doesn’t show often so sometimes it doesn’t get raised with them. And often by the time people have worked out that they really have to talk about this, or do something about it, sometimes the pain has developed so far that it’s harder to treat.

Whereas all the evidence shows that when there’s early intervention, when there’s a good employer or good trade union, or even just when the individual decides to sort of flag it early and take some action, then nearly always there’s a much better outcome. Of course a better outcome is a great thing for the patient, but at the same time it’s better for the employer, because it means they’re less likely to lose that person from the workforce and have to pay to replace them and train somebody else etc., so if we can get that right then it’s a win, win.

Christine Johnson: And what key changes are we talking about at the moment, what is being proposed as the best way to deal with this?

Betteridge: I think culturally all parties need to promote cultures within their workplace which promote prevention and good, honest, open dialogue about it, and I think government have a role to play there by providing support programmes, so that employers don’t have to carry the full burden, financially, if they want to offer support to an employee who has pain. And I think it’s also important that worker participation in programmes of that sort… is really important, so that management and workers can discuss together the best ways of offering support to people with pain, because after all it’s in their mutual interest to get it right.

Often the best outcomes are arrived at when there’s a sense of a kind of holistic assessment taken of the persons condition. Obviously it will vary, if we know what’s causing the condition, such as, you know, a form of cancer, or muscular skeletal problem, then often it’s just about getting that person to see the right specialist. If the pain is undiagnosed and it’s not clear what exactly is causing it, then after some sort of triage, and some sort of test to see whether we can get to the bottom of it, often it’s best if that person gets to see a specialist in pain services, rather than a particular medical specialty. But I think the thing running through all of this is acting early, ‘cause it’s early intervention which gets the best results in the long term.

Johnson: And if it’s too late for early intervention, when we’re talking about later rehabilitation programmes, what’s being proposed there?

Betteridge: Well I guess it’s never too late, there’s always something positive that can be done to help, so I think the message really is to patients is ‘don’t despair!’ There’s primary prevention, which can stop pain developing in the first place, and there’s secondary prevention, which can stop deterioration. So, whatever stage the patient is at, there’s always something positive that can be done.

I think, psychologically, knowing for the patient, or the employee, to know that they have a supportive employer is immensely important; it means they’re often more prepared to be open and honest about how their pain is affecting them. And whilst they’re getting the most appropriate medical support, their psychological, sort of bio-psycho-social model really, needs to really kick in, cos it’s all too easy to become depressed by your pain, that depression can be worse if you’re also pessimistic about your chances in the workplace for the longer term. So getting that kind of social support, and the psychological support, alongside the more medical and mechanical support, I think is the right package.

Johnson: And if we take this as a starting point, how soon do you think we could hope that these measures could be implemented, with the required support at each level?

Betteridge: Some places are doing it now, there are some really great examples of best practice. I think the challenge is to really capture that, and disseminate it and promote it so that those who aren’t delivering to that standard realise that a) that it can be done and b) if they do it, they’re not only going to be doing the right thing, but they’ll be saving money in the long term too.

Johnson: And while we’re discussing at European level, and that’s important, can we talk about the UK model, because obviously there’s differences between Scotland, between England, and so on?

Betteridge: I think the how, that these support measures can be delivered and developed will vary, quite rightly, between different nations across the UK, but the what, what it is that we are trying to do, I think is common, it’s a common challenge, it’s about providing support for people early on so that they don’t deteriorate, so that they’re better in the long term, and the employer is better off in the long term.

Jamie O’Hara: I’m Jamie O’Hara and I work with Adelphi Real World and the Haemophilia Society in the UK. We’ve conducted a survey across the five main EU countries, looking at four thousand different patients, from both the physician and the patient perspective, and we’ve been able to develop a holistic burden of illness study so we can gain a better idea into the overall effect that pain is having on society as a whole.

And we’ve found some quite interesting things: that the level of unemployment for those suffering from chronic pain, particularly within the neuropathic parts of it, are only employed up to 40%, so obviously that’s hugely different from the 7% average across the normal population. And not only that, we find that quite a large portion, around 20%, in fact, have full time care givers which is also again a huge societal perspective, a cost to society.

Johnson: So the consequences are felt by the individual, as well as by society as a whole, it’s quite far reaching?

O’Hara: Well yeah, obviously because the majority of the care givers are often partners, friends or volunteers, so obviously these are either not paid at all, or subsidised by the state in order to provide this care to the patient. So this represents an opportunity cost, and within our sample of around four thousand patients we found that there was over five thousand lost working days from the caregiver alone, that’s before we’ve even begun to quantify the total lost number of days from the patients themselves, which is even more substantial.

Johnson: We talk about preventing chronic pain, but how do you reintegrate people into the work place, what key changes are we talking about?

O’Hara: I think it’s about strategy, I think the way that we currently assess pain care, and medical pain care interventions, and healthcare interventions with regards to pain is quite narrow, because we look at disease areas individually, whereas pain is by and large a symptom of many different disease areas. So I think the SIP initiative is very good because it calls for an overall strategy across every disease area in order to push the standard of care to support these patients. So particularly the strategy, as well as the process indicators that have been developed could be very, very helpful in improving people’s lives, and not just the patients, that of the wider society as well.

Jacqui Lyttle: I’m Jacqui Lyttle, I’m an Independent Commissioning Consultant, working across the UK, working with CCGs (Clinical Commissioning Groups) and trust and health boards trying to improve patient care.

Johnson: Today we’ve been discussing the reintegration of chronic pain patients into the workplace, so what has the research indicated the main problems are for the patient if they’re at work or if they are trying to return to work after a period of being off?

Lyttle: One of the biggest things that we found was the care wasn’t seamless, and if patients got the diagnosis wrong at the beginning their journey was delayed, which meant that they were often away from work, or trying to get back to work and there were delays in the system, and actually a lot of people felt that their pain was not taken seriously.

We discovered that there was a real issue with initial diagnosis, and of appropriate diagnosis, and if patients got on the wrong pathway they could be referred to the wrong professional and they got stuck in the system, and actually as a consequence of that their condition often deteriorated, which meant they were either off work longer or it was more difficult to get back into work. There’s a lot of time loss, there’s a lot of delays, there’s a lot of waste in the system, where people go from their GP [general Practitioner] to an orthopaedic surgeon, for example, then it’s not an orthopaedic problem it’s a gastro problem so they can get referred onto multi professionals and they go back into the system, by which time the patient’s condition has deteriorated.

Johnson: And obviously there’s a massive impact on the individual, but what about the cost to society as a whole?

Lyttle: I think that’s more far reaching than people realise, the work that we did, we mapped not just the impact on patients but on… impact in primary care, so the number of times that a patient went back to their GP, the times that they accessed secondary care services, but also the time that they were away from work, people were then claiming benefits because they were obviously unable to go to work, so the impact is bigger than people understand, especially in the UK, especially in England with the changes in the NHS [National Health Service]. It costs more when pain is not managed that it does to actually manage it properly.

Johnson: You’re one of five people who is drafting, or has drafted, the proposal for action – can you tell me what this is based on and what key changes it puts forward?

Lyttle: We mapped in great detail a number of patients from their initial attendance at the GP practice, through to when they and their professionals felt that their pain was adequately controlled, and the things that we discovered, that patients circled the system a number of times, again depending on how the diagnosis happened, whether it was done timely, by the right person, whether actually they got the right treatment, the complications. And one of the things that we identified is that even though the burden of pain is greater than diabetes, asthma and COPD (Chronic Obstructive Pulmonary Disease) combined it doesn’t have the same priority as those long term conditions. So what we’re hoping for is that pain will be seen as a priority within the NHS in England.

Johnson: And is it significant to discuss this at European level, why is it important to do this?

Lyttle: I think it is actually, because I don’t know if the UK is unique, I don’t think it is, I think one of the things that we found that there was clinical variation across England, and I don’t think it will be any different in the devolved nations in the UK and I don’t think it’ll be different across Europe.

Johnson: What support is required from individual governments? What do they have to do to support this?

Lyttle: I think, I can only speak for England, I think we need to get it on the priorities within the operating framework for NHS England, and then across the wider UK and I would imagine similar processes would have to happen in the other EU countries.

Johnson: And what impact, if this is followed through properly, will this have on a chronic pain patient who’s in work or who’s finding trouble staying in work?

Lyttle: If we were able to make even some improvements to the way which patients get treated it would mean that they could live more independently, they’d have better pain control sooner, and it would also mean that we would have less burden on the NHS, we would then hopefully be able to, sort of reuse some of that money to treat more patients, because one of the problems is that patients wait a long time for treatment, so I think it would just be improving the whole circle of treatment really.

From the work that we did last year we are now working with the British Pain Society and the Royal College of GPs to… we’re in the process of writing a commissioning guide for pain and we’re now trying to raise the profile of pain in England at the moment with commissioners. But I think there’s a long way to go, and I really think it needs some more support and a higher profile nationally, from NHS England and the Department of Health down before we do see a sea change, ‘cause at the moment we’re competing with diabetes and asthma and other long term conditions, and I think pain should be seen as a long term condition in the same way.

Evans: That was Independent Commissioning Consultant Jacqui Lyttle, speaking with Pain Concern’s Christine Johnson.

The Societal Impact of Pain is held under the umbrella of the European Federation of the International Association for the Study of Pain Chapters, and they’ve designated 2013/14 as the Global Year Against Orofacial Pain. This is pain experienced in the face and/or oral cavity. One such condition is Trigeminal Neuralgia; it’s a condition often misunderstood by health professionals,

Back in the spring of 2012 Jillie Abbott, then Chairman of the Trigeminal Neuralgia Association UK, addressed the British Pain Society annual scientific meeting on that very point.

Jillie Abbott: Trigeminal Neuralgia is very severe face pain, neuralgia is a nerve pain and trigeminal refers to the trigeminal nerve, which has three branches either side of the face.

Evans: Let’s call it TN from now on [yes], we’ve talked about TN before on Airing Pain, but you’re here talking to health professionals on how to deal with it.

Abbott: Yes, it’s wonderful to have that opportunity, one of our main concerns is trying to raise awareness of TN amongst medical professionals and it’s come to our notice over the years certainly that people are not being treated properly. Diagnosis, I’m please to say, is quicker than it used to be, people are getting diagnosis much faster than in the past, but quite often they are not being treated effectively.

Evans: I suppose that’s one thing, to get the diagnosis done, but in what way aren’t they being treated?

Abbott: Quite often GPs don’t know very much about the condition. Sadly, some of them don’t seem prepared to research it and they’re sometimes not prescribing the right medication and, sometimes, if they are prescribing the right medication, they’re not telling the patients how to take the drugs.

For example, it’s normally treated with anticonvulsants and these must build up in the bloodstream, so they need to be increased very slowly and if the pain isn’t so severe they can be decreased slowly, but they mustn’t be taken like pain killers: you can’t just take it when the pain comes along. And patients are not told that, so, therefore, they’re taking the drugs and they’re not having any effective pain relief as a result.

They’re also not told about the side effects so, quite often, because carbamazepine is the main anticonvulsant drug used to treat TN, they’re not told that they do quite often have very severe side effects; that you’re going to feel dopey, spaced out, may have nausea… it does cause mental confusion in some cases, and because patients aren’t told this, or warned [about] it in advance they will stop the drugs and think, ‘I can’t take that, I can’t function, I’m too zombie like’, so they need to be warned that this is the effect or could be the effect. So, therefore, it would be far better if there was a bit more communication between the GP and the patient initially, so they knew what to expect.

Antidepressants are also used to treat TN, and patients aren’t told that they are being given antidepressants for pain relief, they say to us, ‘I’m not depressed, or if I am depressed it’s the condition that’s making me depressed. I don’t want to be given anti depressants’, then, it isn’t explained to them and that’s the message that we’re trying to get across.

Evans: You have trigeminal neuralgia?

Abbott: Yes.

Evans: Explain what it’s like.

Abbott: It’s an electric shock type pain. When it’s at its worst it is like being electrocuted; it’s like having a cattle prod in your face and it is so intense and so excruciating that while you’re having an attack of pain you’re completely incapacitated: you can’t do anything, you can’t speak, you can’t think, it just rivets you to the spot, sometimes it will even bring you to your knees.

And, unfortunately, it’s a progressive condition, so the pain attacks tend to become more frequent, they don’t necessarily increase in intensity – they can’t really – but they tend to become more frequent and it’s this absolute fear of having another attack of pain that worries people so much. And because they’re frightened they will take whatever action possible to avoid having another attack. It can be triggered by light touch, eating, drinking, talking, smiling, kissing, all these sort of things, so people become very isolated, they won’t go out in the wind – even air conditioning in a shop can set it off – so they don’t go out very much. They can’t socialise because they can’t eat and they find it embarrassing to try and eat in public, so they withdraw and they can become very isolated and that isolation in itself causes depression loneliness and more anxiety, so it can be a vicious circle.

If they have the right treatment and if they can talk to other people with the condition and get some help and advice and tips and coping mechanisms they will fare much better.

Evans: Tell me what that help involves and what the coping mechanisms are?

Abbott: Above all, what people say when they first contact us is how relieved they are to talk to somebody else who suffers from the condition, actually someone who really understands their pain and what they’re going through, that’s a huge relief to them. And being able to talk to somebody who is coping with their life is extremely beneficial; they can see that other people suffer from it. Alright, there may not be an effective long lasting cure, I mean there are various treatments, but there are ways of dealing with the pain, ways of coping with it, and that gives them hope and encouragement. So that’s hugely beneficial.

Evans: What ways?

Abbot: If people start off with the right medication and first of all get their pain under control, that takes away some of the fear. We can then explain how others of us cope with pain attacks: if you can’t drink you could drink through a straw; you can eat mushy food, or put your normal food in a food blender if you’re having difficulty eating. We always advise people to talk to their employers, explain the situation. Because it’s an invisible condition, employers can sometimes be very unsympathetic, but if they get brochures and information and leaflets from us and take those in to their employers, that helps for the employer to understand what they’re going through and become more sympathetic and try and make arrangements about their working life to accommodate the difficulties that they might face.

There are lots of other tips, for example it you’re suffering on a windy day or a cold day we say to people: ‘wear a balaclava – don’t be embarrassed about the fact that people may look at you rather oddly because it’s not midwinter’. Food to avoid: different things we’ve found can trigger it, sweet foods, spicy foods, nuts… anything crunchy will cause it, so we give people dietary advice and just various tips on how to get round the situation.

Evans: What sort of response do you get from the professions when you stand up in front of them and talk to them about the problems that their patients are facing?

Abbott: I think to a degree most of them now are more understanding about the actual problems. When I talked to them in the meeting yesterday they were quite surprised about the fact that there are complaints from patients about the way they’re treated; perhaps the people who came along to the meeting were the ones who are treating people properly.

But I think some of the horror stories that I was telling them were quite shocking to one or two of them, or to most of them in the room in fact. And I think they probably will be determined hereafter to treat their patients with a great deal more care and compassion and, in fact, all of the medical profession are going to have to do that because there’s a NICE [National Institute for Health and Care Excellence] guideline, which came out in February 2012, which covers what patients in time will grow to expect from all their medical staff: information, involvement, choices and shared decision making.

Evans: You might have noticed the shock on my face – why does a health professional need a guideline to tell them how to treat a patient with respect?

Abbott: Exactly, you wouldn’t have thought it would be necessary, but I’m afraid it is. We have collected quite a few stories from people which are actually quite heart rending. These are from records kept by our telephone helpline team:

  • Her mother had seen a neurologist – she couldn’t remember his name – who treated her, quote, with ‘indifference’ and said that she had migraine. The caller said that she thought the neurologist had no interest in her mother because of her age.
  • Her GP is not helpful and tells him to forget about it.
  • His dentist tells him that the patient is no longer his ‘pigeon’.
  • The GP has done a really good scaremongering job on all the procedures for TN, telling him that ‘they were all far too dangerous and not performed often enough.’
  • And, to end on a good one, her GP immediately recognised the symptoms and diagnosed TN.

Evans: Now that’s a mixture of responses to your TN helpline, predominantly bad experiences?

Abbott: Yes, I mean it is true that the people who come to us could be those who are not getting the right treatment… but I do think a lot of people do get very good treatment, but people do still come to us and there should not be as many of these stories as there are. It’s too often the case that people feel that they need to ask for further help with dealing with the medics – that shouldn’t be necessary.

Evans: So when you read these to the room of consultants and professionals yesterday was there an audible gasp?

Abbott: I think there was, yes. I think this was quite a shock to most of them in the room.

Evans: What sort of questions did they ask you?

Abbott: One chap actually said that he felt it was disgusting and this ought to be referred to the General Medical Council.

Evans: At a British Pain Society event you may be speaking to the converted?

Abbott: Yes.

Evans: It’s the unconverted you need to get hold of.

Abbott: I know, I know, and this is the difficulty we have. We would love to have the opportunity of running training courses for general practitioners and dentists. Our medical advisor is Professor Joanna Zakrzewska and she runs courses for trainee dentists on dental pain, facial pain… and she tells me that very few people turn up to these pain courses, but if there is a course being run on cosmetic dentistry the queue is down the road and round the corner.

So there is a difficulty there of getting the message across, we’d love to have more opportunity of training GPs and dentists. We have a joint patient and profession, healthcare professional, conference every two years and we try desperately to publicise this widely. We’d love the opportunity to do more of those and to get the message across… I mean I’ve no idea how many GPs there are in the country – probably something like 250,000 – but GPs don’t, obviously, have enough time. But what they need to do, if they suspect TN, is to first of all sort out the right pain relief and then to refer on, so that they’re referring then to a specialist who does have enough time to give to the proper history taking.

Evans: That’s Jillie Abbott, of the Trigeminal Neuralgia Association UK. And for more information, go to their website, which is TNA.org.uk.

I’ll just remind you of our usual words of caution, that whilst we believe the information and opinions on Airing Pain are accurate and sound, based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing; he or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.

All editions of Airing Pain are available for download from Pain Concerns website and CD copies can be obtained direct from Pain Concern. All the contact details, should you wish to make a comment about these programmes via our blog, message board, email, Facebook, Twitter or pen and paper, are on our website which is painconcern.org.uk .

A final word of advice on trigeminal neuralgia, for doctors from the patient: Jillie Abbot…

Abbott: Yes, it’s very important I think for medics to provide time for the patient to be able to give their opening statement, to tell their story. Research has shown that not enough time is given to this, apparently, from a study recently in outpatients, of 335 patients the average time given to them was 92 seconds; 78% of patients finished in just two minutes.

And it’s in the first few minutes of telling their story that professionals can sometimes make judgements, and I think they need to listen more to the patients and it’s listening to the patients that will give them the diagnosis. There’s no diagnostic test for TN, it’s all down to the history taking, so this is what’s very, very important: getting the right diagnosis is crucial because, if they don’t get the right diagnosis and the medical treatments are not effective, patients sometimes go on to have surgery and that, if it’s not classic TN, will make the situation far, far worse and then it becomes an intractable condition.

Evans: But in many ways you can’t blame the health professionals for only having 92 seconds average with a patient, could the patient prepare for that 92 seconds?

Abbot: Yes, there are three different stages to this: while they’re waiting for their initial appointment, they need to learn to accept the condition; they need to learn, hopefully from us, some coping mechanisms and focusing on their pain will be unhelpful and self-destructive; and, very importantly, failing to eat properly will lower the body’s defence mechanism and its ability to heal.

At the consultation I think it’s important that they expect that they may well get given questionnaires; they may meet someone other than just one specialist. These days there are multidisciplinary teams that are conducting these patient sessions, so they might have with them a neurologist, a psychiatrist, a registered nurse, perhaps, a biofeedback therapist, possibly even a neurosurgeon.

And we say to them keep a pain diary – that’s really important – because that will give the medical professional an idea of when the pain is occurring, how often, what effect the drugs are having, what side effects they might be having… so that’s very important. And they need to take along notes about the drugs and also lower their expectations sometimes: don’t expect a complete cure, but expect a reduction in pain.


Contributors:

  • Neil Betteridge – Director of Neil Betteridge Associates and Vice-Chair of Chronic Pain Policy Coalition
  • Jamie O’Hara – Adelphi Real World and elected trustee of Haemophilia Society
  • Jacqui Lyttle – Independent Commissioning Consultant
  • Jillie Abbott – Projects Officer of Trigeminal Neuralgia Association.

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Talking to representatives from a variety of pain organisations, including the Trigeminal Neuralgia Association, about the wide-reaching impact that pain has on society

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

Christine Johnston heads to Brussels to investigate the impact that pain has on society as a whole at the Societal Impact of Pain lobby group’s fourth annual event. She talks to Neil Betteridge of Neil Betteridge Associates which promotes a holistic approach to pain management. Betteridge explains that early intervention is beneficial not only for the patient but also for employers, as it leads to faster, more effective treatment and less time spent outside of the workplace. Jamie O’Hara, who works with Adelphi Real World and the Haemophilia Society, discusses the results of a survey carried out about the effect pain has on society, which found that those living with chronic pain and their carers experience disproportionately high levels of unemployment.

Christine also speaks to Jacqui Lyttle, an Independent Commissioning Consultant, who criticises the current care given to those with chronic pain conditions, citing wrong diagnoses and the subsequent delays in accessing effective treatment as the main issues. She explains that pain management costs more when it’s not managed effectively than when it is, both in terms of money and in working days lost through illness.

Paul Evans then meets Jillie Abbott, the Projects Officer of Trigeminal Neuralgia Association, who describes the organisation’s attempts to raise awareness of the little-understood condition within the healthcare profession, citing the high frequency of misdiagnoses and ineffective treatment as the motivation for this educational focus. She also shares some coping mechanisms that can help those living with Trigeminal Neuralgia and emphasises the need for better communication between people living with the condition and healthcare professionals.

Issues covered in this programme include: Trigeminal neuralgia, orofacial pain, holistic approach, workplace, employment, misdiagnosis, communicating pain, raising awareness, stigma, patient experience, discrimination, social support, the biopsychosocial model, economic impact and carers.


Contributors:

  • Christine Johnston,  Pain Concern
  • Neil Betteridge, Owner of Neil Betteridge Associates and Vice-Chair of Chronic Pain Policy Coalition
  • Jamie O’Hara, Adelphi Real World and elected trustee of Haemophilia Society
  • Jacqui Lyttle, Independent Commissioning Consultant
  • Jillie Abbott, Projects Officer of Trigeminal Neuralgia Association.

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The staff and volunteers at Pain Concern are taking part in the Edinburgh Christmas 5k Fun Run to raise money for the charity.

You can help us out by donating on our JustGiving page. You can donate as much as you like, and also apply Gift Aid to your donation.

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People living with pain rely on our support, and we rely on your donations. Please consider donating to help people living with pain. For example: £15 lets us provide ten callers with information and support from our helpline volunteers.

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Sut gall nyrsus ddefnyddio therapi ymlacio, tylino, aciwbigo ac empathi i helpu pobl  reoli eu poen

Cefnogwyd y prosiect darlledu a chyfieithu hwn gan Ymddiriedolaeth Oakdale.

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‘Dychmygwch sut mae’n teimlo os ydych chi mewn poen a phobl ddim yn eich helpu.’ Yn union fel gweithwyr proffesiynol eraill yn y byd iechyd, gall nyrsus ei chael yn anodd ar brydiau i ddeall agwedd pobl sy’n byw gyda phoen. Ar ddiwrnod hyfforddi i fyfyrwyr nyrsio ar boen cronig, roedd Gareth Parsons wedi pwysleisio pwysigrwydd credu’r claf ac fe ddywedodd rhai gwirioneddau anghyfforddus yn seiliedig ar ei ymchwil i’r rhywystredigaethau mae pobl mewn poen yn aml yn eu profi gyda gweithwyr iechyd proffesiynol: ‘chi yw’r broblem!’

Yn dilyn yr hyfforddiant hwn, gobeithir y bydd y grŵp hwn o nyrsus yn rhan o’r ateb i’r broblem. Y cam cyntaf yw deall bod poen cronig yn gyflwr ynddo’i hunan – yn y ffordd hon bydd y nyrsus yn ymwybodol o’r broblem o drin poen cronig yn union fel petai’n boen aciwt (er enghraifft, defnyddio opioidau yn ormodol) ac yn gallu helpu i ddelio â phryder ac ofn.

Pan fydd ganddynt well syniad am natur poen cronig, bydd nyrsus yn llai tebygol o ‘daflu cyffuriau’ at y broblem, meddai Owena Simpson. Mae hi’n tywys y myfyrwyr nyrsio trwy sesiwn therapi ymlacio, tra bo Maria Parry yn addysgu technegau tylino craidd i’r myfyrwyr ac yn dwyn i gof ei phrofiadau ei hun o sut y llwyddodd claf roedd hi’n gweithio ag ef oresgyn methu cysgu yn dilyn therapi tylino. Bydd Gareth Parsons yn gorffen y sesiwn gyda gwers ar aciwbigo gan esbonio pam fod y driniaeth hon yn gallu bod yn fwy effeithiol i rai cleifion yn hytrach nag i eraill.

Paul Evans: Helo a chroeso eto i Airing Pain (Sôn am Boen), y rhaglen sy’n dod atoch dan nawdd Pain Concern; elusen yn y DU sy’n gweithio i helpu, cefnogi a rhoi gwybodaeth i bobl sy’n byw gyda phoen, ynghyd â gweithwyr iechyd proffesiynol. Arianwyd y cynhyrchiad hwn gan grant ‘Gwobrau i Bawb’ (‘Awards For All’) o Gronfa’r Loteri Fawr yng Nghymru.

Owena Simpson: Fel nyrsus sy’n nyrsio oedolion rydym yn awyddus iawn, neu’n tueddu yn gyntaf, i fynd ar ôl meddyginiaeth yn hytrach na chwilio am ffyrdd amgen i reoli pobl sydd mewn poen a helpu pobl i ddod i wybod bod ffyrdd eraill o ddelio â phoen cronig yn hytrach na mynd yn syth am feddyginiaeth a’r holl sgîl effeithiau sydd ynghlwm â hynny.

Evans: Yn y cynhyrchiad hwn o Airing Pain (Sôn am Boen) rwyf wedi dod i Brifysgol De Cymru i weld sut mae grŵp o fyfyrwyr nyrsio yn cael mewnwelediad i sut y gallant helpu pobl gyda phoen cronig yn eu gyrfaoedd yn y dyfodol. Ac mae hwn yn amser da i ymuno â nhw oherwydd dyma’r ddarlith olaf un yn eu cwrs gradd tair blynedd mewn nyrsio oedolion. Y darlithydd yw Gareth Parsons, sydd, pan oedd yn nyrs glinigol arbenigol mewn rheoli poen, wedi datblygu clinigau poen cronig wedi eu harwain gan nyrsus, ar aciwbigo, ysgogi nerfau trawsgroenol (transcutaneous nerve stimulation (TNS)) a therapi ymlacio.

Gareth Parsons: Bydd heddiw ychydig yn wahanol: rydym am ddatgelu rhai o’r ymyrraethau y gall pobl â phoen cronig ddod ar eu traws a nyrsus fydd yn rhoi’r ymyrraethau hyn i gyd. Felly dyma dylino, fydd yn cael ei arddangos gan Maria Parry.

Maria Parry: Roedd gennym glaf oedd wedi torri ei gefn a byddai’n dod yn ôl ac ymlaen am ofal seibiant bob 6 wythnos ac roedd ganddo lawer o boen o’r gwingiadau yn ei goesau ac o gramp. Doedd e byth yn cael noson dda o gwsg, roedd yn symud yn barhaol ac roedd ei boen yn golygu nad oedd byth yn gallu bod yn gyfforddus.

Parsons: Bydd Owena yn gwenud y sesiynau ymlacio.

Simpson: Dyma amser aseiniadau ac mae un wedi ei gyflwyno’n barod a nawr mae’r traethodau hir ar y gorwel! Felly ydych chi i gyd yn teimlo dan straen? Neu efallai bod rhai ohonoch yn teimlo’n iawn. Ond mae arwyddion sylfaenol – crïo, cur pen ac anwydau o hyd neu’n teimlo’n nerfus yn gyffredinol.

Parsons: Os edrychwch chi ar y siart yma, fe welwch o amgylch ochr y pen bod llawer o bwyntiau aciwbigo. Mae nerfau’r craniwm â llawer o gyflenwadau bach i’r croen a’r cyhyrau o amgylch yr ardal hon – yn hawdd iawn i ysgogi pwysedd. Felly byddai rhwbio ochr eich pen yma – mae’n siwr eich bod yn gwneud hyn yn barod? Mae hyn i wneud i chi feddwl am ffyrdd eraill y gallwch helpu pobl mewn poen ac mae hefyd er mwyn gwneud i chi feddwl mewn ffordd wahanol i’r ffordd rydych chi’n meddwl am boen ar hyn o bryd. Felly gyda hynny mewn golwg, mae gen i gwestiwn i chi. Ydych chi’n teimlo bod unrhyw wahaniaeth rhwng poen aciwt, cronig a lliniarol? Beth ydych chi’n deimlo yw’r gwahaniaeth rhyngddyn nhw? Hyd amser? Math o boen? Iawn, felly gwahaniaethau mewn dwyster neu fynychder – chi’n gwybod, p’un ai ydy o yno bob amser. Dwyster? Felly rydych wedi deall rhai o’r pethau rydw i’n sôn amdanynt ac hefyd efallai wedi sôn am rai o’r mythau rydym am eu harchwilio.

Os edrychwch chi ar ddiffiniadau’r gwahanol fathau o boen yn y llyfrau gosod, dyma beth mae nhw’n ddweud: poen aciwt – poen diweddar, gall fod yn rhywbeth sy’n digwydd am eiliad fel pan fyddwch yn brifo’ch hun efo nodwydd neu’n cael pigiad. Neu gall barhau am ychydig o funudau neu rai oriau.  Byddai’r rhan fwyaf o bobl yn dweud bod poen aciwt yn rhywbeth sy’n para llai na 3 mis. Rydym yn aml yn meddwl bod achos penodol i boen aciwt – mae’n digwydd ar unwaith. Mae’r ddanodd wedi ei achosi gan ofal deintyddol neu rydych wedi cael anaf neu gall fod gennych glefyd cudd sy’n achosi’r boen. Ac mae’n bosibl amcangyfrif pa mor hir fydd yn para; gallwn feddwl bod diwedd i’r boen. Ac rydych yn aml yn gweld pethau o’r enw tafl-lwybr poen, fel y gellir mapio’r hyn fyddai poen aciwt clasurol i rywun sydd wedi cael triniaeth hernia neu rywun sy’n esgor babi. Mae pobl wedi mapio hyn  – beth yw nodweddion y boen, pa mor hir fydd yn para a gallwch weld y gwahaniaethau rhyngddyn nhw.

Os ystyriwch chi boen lliniarol, yna mae ei hyd yn amrywio. Mae’n rhaid i ni beidio â meddwl am ofal lliniarol fel gofal yn y cyfnodau terfynol. Os siaradwch chi gyda Maria am ofal lliniarol, byddai hi’n dweud ei fod yn ymwneud â newid o driniaeth gweithredol i ymestyn bywyd i driniaeth sy’n canolbwynito ar ansawdd bywyd. Mae’n dibynnu ar natur y clefyd, oherwydd mae’r rhan fwyaf o bobl yn meddwl am ofal lliniarol yng nghyd-destun canser ond gall hefyd fod yn berthnasol i glefydau cronig eraill. Ac fel arfer, ond nid bob tro, mae’n gwaethygu wrth iddo fynd ymlaen. Ond mae perthynas achosol oherwydd y clefyd neu oherwydd y triniaethau.

Os ystyriwn ni boen cronig, rydych i gyd wedi deall bod poen cronig yn rhywbeth sy’n para am amser hir ac mae’r syniad o boen cronig wedi ei ddisgrifio mewn sawl ffordd. Byddai’r rhan fwyaf o ddiffiniadau’n cytuno ei fod yn rhywbeth sydd wedi para am fwy na 6 mis. Byddai rhai’n dweud mwy na 3 mis, a byddai eraill yn edrych ar feini prawf eraill. Golyga hyn bod y boen wedi para yn hwy na phrosesau gwellhâd arferol a gall olygu bod achos sydd heb ei adnabod i’r boen, ac mae parhad poen cronig heb gyfyngiad a does dim sicrwydd prwyd ddaw i ben. Pur anaml y gellir gwella poen cronig. Rydw i wedi edrych ar ôl pobl gafodd eu geni mewn poen ac wedi byw am 80 mlynedd mewn poen, yn ogystal â phobl sydd wedi cael poen oherwydd rhywbeth sydd wedi digwydd iddyn nhw yn eu bywydau. Allwch chi ddychmygu sut fyddai bod mewn poen am 80 mlynedd?

Felly rydw i am i chi feddwl yn ôl i llynedd pan soniwyd am ddau gategori eang o boen. Y cyntaf ydy poen nocidderbyngar (nociceptive). Mae hyn pan fo’ch system nerfol yn iach ac yn gyfan. Yr ail yw poen niwropathig (neuropathic). Mae’r system nerfol yn ymwneud â’r poen hwn mewn rhyw ffordd wrth gynhyrchu poen neu waethygu poen sydd yno’n barod. Felly mae rhywbeth wedi digwydd i’r system nerfol. Nawr mae’r rhain yn bethau digon eglur i edrych arnyn nhw pan rydych chi’n edrych ar boen aciwt. Ond pan fyddwch chi’n edrych ar boen cronig mae’r system nerfol yn newid, mae newidiadau ffisiolegol yn digwydd yn y system nerfol sydd yn gallu newid poen arferol, nocidderbyngar i gael rhai o nodweddion niwropathig oherwydd bod y system nerfol yn blastig, mae’n newid ac altro.

Felly oherwydd y cymhlethdod hyn, bu datganiad bod y poen cronig hwn yn broblem iechyd pwysig ynddo ei hun. Dyma Ddatganiad Penod Cymdeithas Ryngwladol Astudiaeth Poen Ffederasiwn Ewrop (International Association for Study of Pain Chapter Declaration) – bod poen yn broblem ynddo ei hun. Cefnogwyd hyn gan Senedd Ewrop a chafwyd dadl ar y pwnc yn San Steffan hefyd. Felly os wnawn ni feddwl pam fod poen cronig yn broblem ynddo ei hun – mae oherwydd nad yw achos y boen yn amlwg. Os geisiwch chi gysylltu poen cronig â chlefyd a does dim arwydd o glefyd – beth ydych chi’n ddweud wrth y person â phoen cronig? Nid yw eich poen yn bodoli? Ac un o’r problemau sydd gennym gyda phoen ydy ein bod yn edrych ar boen trwy lens model bio-seicogymdeithasol. Fodd bynnag, mewn gwirionedd rydym yn esgus ei gefnogi.

Y gwirionedd yw fod pobl mewn poen cronig yn canolbwyntio llawer ar y fioleg, mae rhai’n canolbwyntio ar y seicoleg ac ychydig iawn yn rhoi ffocws i gymdeithaseg. Dylem feddwl ynghylch beth sydd wedi achosi’r boen cronig neu beth yw’r etioleg. Yn fwy pwysig, hoffwn wybod hanes y claf am y boen cronig – beth yw eu stori nhw. Dylem wrando ar yr hyn maen nhw’n ei ddweud a chredu’r hyn maen nhw’n ei ddweud ac addasu ein meddyliau i fod yn unol â’r hyn maen nhw’n ei feddwl am eu poen. A’r hyn ddylem ni anelu ei wneud yw lleihau’r risg o ddatblygu poen cronig oherwydd unwaith mae rhywun yn dioddef poen cronig mae’n llawer mwy anodd ei reoli na phe bae wedi bod yn bosibl rhwystro rhywun rhag bod dan ormes poen cronig yn y lle cyntaf. Felly mae angen asesu priodol cynnar arnom.

Mae’n rhaid i ni gredu’r claf – cofiwch bod yr achos o bwys ond dim hwn yw’r unig ffactor. Nid y ffactor mwyaf pwysig ydy e chwaith. Yn fwy pwysig, mae’n rhaid i ni gyfathrebu’n eglur – mae’n rhaid i ni esbonio pethau’n rhesymegol ac mewn dull y bydd pobl yn gallu deall yn lle taflu ‘jargon’ atyn nhw. Mae’n rhaid i ni eglurhau camsyniadau sydd gan bobl oherwydd mae hynny’n ffordd i ddelio ag ymddygiadau poen niweidiol. Mae’n rhaid i ni ddelio ag ofnau a phryderon. Dylem ddefnyddio dull holistig, cytbwys sydd ddim yn canolbwyntio popeth ar fioleg. A dylem anelu at gael dulliau lliniaru poen da yn gynharach ac nid yw hynny o reidrwydd yn cynnwys cyffuriau. Gall cyffuriau i bobl mewn poen cronig ddod yn rhan o’r broblem yn lle’r ateb.

Gobeithio ‘mod i wedi cyflwyno rhywbeth i chi gnoi cil arno ac wedi herio, ychydig, y ffordd rydych chi’n meddwl am boen cronig. A gobeithio y gwnewch chi fwynhau’r profiad o ymlacio, o gael tylino’ch dwylo a finne’n cael y cyfle i dalu’n ôl trwy roi nodwyddau aciwbigo ynoch chi. Mi wn y bydda’i’n mwynhau hynny! Unrhyw gwestiynau?

Parry: Maria Parry ydw i, uwch ddarlithydd mewn gofal lliniarol. Rydw i’n therapydd tylino ac heddiw rydyn ni’n addysgu myfyrwyr y drydedd flwyddyn am ffyrdd amgen i ddelio â rheolaeth poen. Felly, eu cael i feddwl am ddefnyddio therapïau eraill mewn perthynas â rheolaeth poen cronig trwy brofi rhai o’r therapïau hynny eu hunain.

[I’r myfyrwyr] Iawn, ocê – pawb yn iawn? Pan rydyn ni’n meddwl am boen, rydyn ni’n meddwl am y bocs tabledi. Ro’n i’n lwcus rhai blynyddoedd yn ôl fel nyrs staff i gael y cyfle i hyfforddi fel therapydd tylino ac i weithio o fewn yr Ymddiriedolaeth. Cafodd 6 ohonom yr hyfforddiant a dechreuais i weld bod defnyddio tylino syml ar y cleifion yn cael elw anhygoel.

Felly rydyn ni’n mynd i edrych ar dylino dwylo sylfaenol. Rydw i’n bwriadu defnyddio technegau tylino a’u rhoi mewn tylino dwylo syml iawn a gallwch, yn elfennol, ddefnyddio rhai o’r pethau rydych chi’n eu dysgu heddiw gydag unrhyw glaf heb ei alw’n dylino – gallwch roi hufen ar law neu droed rhywun (mae hwn yr un mor effeithiol ar y traed a bydda’i’n siarad am hynny hefyd). Felly gallwch ddefnyddio rhai o’r technegau hyn petaech yn adnabod rhywun â phoen cronig – gallech eu cyfeirio ymlaen at rywun arall neu gallech feddwl, “Wel, mae gen i 5 munud i eistedd yma a defnyddio hufen a falle bydd hynny’n helpu.”

Sôn am ymlacio ydyn ni yma – dydyn ni ddim yn trin unrhywun ac os edrychwch chi ar y gwrtharwyddion i dylino maen nhw mor hir â’ch braich. Felly fyddech chi ddim yn tylino neb ac mae’n siwr bod llawer o bobl â phroblemau poen cronig â rhai o’r gwrtharwyddion hyn. Efallai bod arthritis arnyn nhw, neu groen gwael, creithiau efallai, neu enyniad (inflammation). Felly mae’n rhaid rhoi popeth mewn perspectif. Mae’n rhaid edrych ar y buddion yn erbyn y risg. Ond rydyn ni’n edrych ar rywbeth sy’n ymlaciol iawn; dydw i ddim yn bwriadu trin unrhywun gyda hyn.

Felly, yn sylfaenol, dewch mor agos ag y gallwch – dyna’r rheswm am y dillad cyfforddus. Dim sgertiau byr ar gyfer heddiw! Rydw i’n defnyddio olew had grawnwin sylfaenol – mae o’n un o’r cludwyr gorau ar gyfer tylino. Ambell waith pan fyddwch yn mynd i weld therapydd tylino bydd llawer ohonynt yn defnyddio mousse neu olew almwn sy’n hyfryd iawn ac yn ddrud iawn. Yn amlwg, dylech feddwl am alergedd. Mae’n rhaid i chi feddwl am y math o olew rydych chi’n ei ddefnyddio. Rydyn ni eisoes wedi amlygu rhai o’r ystyriaethau mewn ymarfer clinigol. Os ydych chi’n mynd i ddefnyddio olew i wneud hyn a’i ddefnyddio fel therapydd yna mae’n rhaid i chi ystyried cael caniatâd ac ati.

Iawn, ocê – chwiliwch am bartner yr un. Felly beth rydw i isio i chi ei wneud yw rholio’ch llewys i fyny, cael cadair gyferbyn, nôl eich clustog a’ch lliain.

Evans: Felly Becky, dyma’ch darlith olaf yn eich nyrsio tair blynedd. A dyma’r tro cyntaf i chi ddod ar draws poen cronig?

Becky: Llawer o flynyddoedd yn ôl bues i’n gweithio fel ysgrifenyddes meddygol i arbenigwr poen ac hefyd gweithiais gyda ffisiotherapydd, felly mae hyn oherwydd mod i wedi gweithio gyda ffisiotherapi ar yr un pryd.  Falle dyma sut mae’r math yma o beth…  dwi’n gweld y buddion oherwydd mod i wedi gweld y buddion fy hun yn y gorffennol.  Dwi’n hoffi cael tyliniad Thai o bryd i’w gilydd felly dwi’n gweld y budd yn hwnnw fy hun.

Evans: Ifan, rwyt ti’n cael tyliniad gan Becky. Gest ti dy synnu gan unrhywbeth yn y ddarlith bore ‘ma am y gwahaniaeth rhwng poen cronig a phoen aciwt?

Ifan: I ddweud y gwir rydw i wedi bod ar leoliad yn Arberth, sy’n amgylchedd gofal lliniarol felly mae’n rhywbeth rydw i wedi arfer ag e.

 Evans: Dwi’n torri ar draws y broses tylino – sut mae’n mynd?

Ifan: Mae’n hyfryd. Wir yn neis.

Parsons: Dyma rywun gyda syndrom poen rhanbarthol cymhleth math 1. Cymerwyd y llun yma ym Mehefin ac roedd hi’n ddiwrnod poeth iawn o Fehefin. Dyma sut gerddodd e i mewn i’r clinig poen. Beth ydych chi’n weld? Wnaethon ni ddim gofyn iddo gymryd ei grys i ffwrdd gyda llaw. Daeth i mewn heb grys. Pe baech chi’n gweld yr unigolyn yma’n cerdded lawr y stryd, oherwydd dyma’r ffordd mae e’n cerdded lawr y stryd – byddech chi’n meddwl ei fod yn glaf iechyd meddwl wrth edrych arno? Ie? Fe ddywedodd wrtha i, ‘Gareth, mae pobl yn meddwl ‘mod i’n wallgo. Ond dyma’r unig ffordd y galla i reoli fy mhoen heb ddefnyddio cyffuriau.’

Felly’r hyn rydyn ni’n ei weld ydy cyfres o wahanol fathau o ymddygiadau poen. Dyma lle cafodd ei anaf gwreiddiol – ei arddwrn. Syrthiodd a thorri ei arddwrn. Gwellodd yn fuan; roedd y llawfeddygon orthopedig yn hapus iawn gydag e a’i anfon i ffwrdd. O fewn wythnos iddo gael yr anaf roedd yn cwyno am boen llosg trwy gydol yr amser ond rodden nhw’n dweud y byddai’n setlo. Pum mlynedd yn ddiweddarach daeth atom ni i’r clinig poen yn y stâd hon. Mae lleoliad y poen gwreiddiol wedi ymledu. Mewn gwirionedd, mae ei fraich gyfan mewn poen ac mae’n ymwybodol o boen yn y rhan fwyaf o’i dorso. Y rheswm pam nad oedd e’n gwisgo crys oedd bod y teimlad o ddillad ar ei groen yn achosi poen. Mae e yn dioddef o ymdeimlad sydd wedi newid. Mae e hefyd yn dioddef o rywbeth o’r enw allodynia oer, felly mae oerfel yn achosi poen. Ar ei law, o amgylch lleoliad yr anaf gwreiddiol. Byddai awel yn mynd drosto mewn ystafell yn achosi poen.

Y cyflwr arall sydd arno yw allodynia mecanyddol. Pan ddaeth i mewn cymerodd ei sling i ffwrdd oherwydd roedd bob amser yn cadw ei fraich mewn sling. Mae hyn wedi achosi problem gyda’i ysgwydd; mae ganddo’r hyn rydyn ni’n ei alw, yn nhermau lleygwr, ysgwydd wedi rhewi, oherwydd ei fod yn gwisgo sling o hyd. Oherwydd bob tro mae e’n symud ei arddwrn mae’n achosi poen a dyna pam mae e’n gorffwys ei arddwrn ar ei goes.

Hefyd mae ganddo wrth-ysgogiad eithafol – mae e’n cymryd sigarét ac yn llosgi’r croen ar dop ei fraich oherwydd bod gwneud hyn yn lleddfu’r boen. Anfonwyd ef i weld seiciatrydd gan y llawfeddygon orthopedig fel rhywun sy’n niweidio’i hun. Daeth atom ni ar ôl cael ei drin gan y seiciatrydd fel rhywun sydd am ladd ei hun. Doedd e erioed wedi meddwl am ladd ei hun ond ddaru nhw roi cyffuriau gwrth-iselder iddo oherwydd ei fod wedi cael ei anfon atyn nhw oherwydd ei fod yn niweidio’i hun.

Hefyd roedd e’n gwisgo TubiGrip ond dydy hyn yn gwneud dim ond dweud wrth bobl eraill bod ganddo broblem gyda’i fraich. Felly os ydych chi’n cerdded o amgylch gyda sling a TubiGrip ar eich penelin mae pobl yn dangos cydymdeimlad – maen nhw’n ofalus o’ch cwmpas, dydyn nhw ddim yn taro i mewn i chi.  Does ganddo ddim anaf ar ei fraich; mae ei anaf yn ei arddwrn.  Ond mae’r Tubigrip yn fwy amlwg – felly mae’n ymddygiad sy’n arddangos poen.

Rydych chi newydd ddweud eich bod yn meddwl ei fod yn edrych fel rhywun o’i go. Felly beth mae e’n feddwl ohonoch chi? Mae hyn o fy ymchwil i ac mae’n edrych ar sut mae cleifion yn amgyffred gweithwyr proffesiynol iechyd, ac yn sylfaenol, i’r cleifion, chi ydy’r broblem. Mae aelodau’r cyhoedd yn broblem hefyd ond chi ydy’r broblem go iawn, oherwydd atoch chi maen nhw’n troi am gymorth a dydych chi ddim yn eu helpu. Rydych chi’n gwneud eu sefyllfa’n waeth. Ac rydych chi’n gwneud hyn trwy beidio â’u credu. Neu does gennych chi ddim diddordeb ynddyn nhw. Neu rydych chi’n eu trin fel eitem i’w brosesu. ‘Dewch i mewn, dewch i’n gweld, gwnewch hyn, cewch y driniaeth hon, ewch i ffwrdd.’ Ac maen nhw’n teimlo’u bod ond yn cael help os ydyn nhw’n mynnu sylw. Ond pan maen nhw’n mynnu sylw maen nhw’n cael eu labelu fel pobl ddig ac ymosodol ac mae hynny’n cael ei roi yn eu nodiadau. Ac yna’r tro nesaf maen nhw’n dod i mewn mae’n rhaid gwneud yn siwr bod apwyntiad yn cael ei wneud gyda rhywun arall yno i ddiogelu’r meddyg.

Ac mae eu poen cronig yn cael ei drin fel poen aciwt oherwydd y prif ffordd o drin hynny yw taflu cyffuriau ato. Ac rydych chi’n taflu cyffuriau ato sy’n gweithio ar system nerfol iach. Ac os nad ydych chi’n fy nghredu, mae hyn o fy ymchwil i: dyma’r prescripsiwns am boen cronig gan feddyg teulu Cymreig nodweddiadol. Nifer y cleifion yn y feddygfa ydy tua 12,000, sy’n arferol i feddyg teulu yn yr ardal hon. Yn fy ymchwil wnes i geisio recriwtio pobl oedd â phoen cronig ond doedd y meddyg teulu ddim yn cadw poen cronig fel label yn ei system gyfrifiadurol er mwyn eu hadnabod, felly roedd yn rhaid i mi ddod o hyd i ffyrdd amgen o wneud hyn. Meddyliais, ‘Faint o bobl yn y feddygfa hon sydd wedi cael prescripsiwn am boenladdwyr am o leiaf 6 mis?’ Dyna un ffordd o ddarganfod os oes gennych boen cronig. Os ydy poen cronig yn para mwy na 6 mis, gadewch i ni edrych ar nifer y poenladdwyr. Roedd pymtheg y cant yn y feddygfa hon yn cymryd opioidau weddol gryf neu gryf iawn.

Nawr, edrychwch ar y rhai sydd yn cymryd y cyffuriau sy’n trin poen cronig, cyffuriau fel gabapentin neu pregabalin – yn cael eu rhoi y dyddiau hyn yn eithaf cyffredin i bobl â phoen cronig. Neu’n cael eu cyfeirio i glinig poen, neu i’r adran orthopedig neu rewmatoleg neu’n cael eu cyfeirio at ffisiotherapydd neu at ffisiotherapydd sy’n ymarferydd uwch. Dim ond 78 claf, dim ond 0.63 y cant. Felly dylai 15 y cant o’r cleifion fod yn cael help; os ydyn nhw’n cymryd y poenladdwyr cryf hyn maen nhw wedi bod mewn poen am fwy na 6 mis. Dylid edrych ar hyn. Yn y DU, ar gyfartaledd, mae’n cymryd pum mlynedd i gael apwyntiad mewn clinig poen. Erbyn hynny mae’r boen wedi ei sefydlu’n gryf ynoch chi. Mae’n broblem anweladwy. Amcangyfrifwyd bod hyd at 11 y cant o bobl yn y gymuned â phoen cronig – mae rhai arolygon wedi dweud bod y rhif yn uwch. A dim ond nifer fach sy’n cael eu hanfon at arbenigwyr i gael triniaeth am boen. Mae 7 Bwrdd Iechyd yng Nghymru, mae gan 6 allan o’r 7 glinig poen, mae gan 6 allan o’r 7 raglen rheolaeth poen. Does dim digon o wasanaethau, sy’n golygu gohirio mynediad a phroblemau cynyddol. A dychmygwch sut beth ydy bod mewn poen a neb yn mynd i’ch helpu ac rydych chi’n mynd at bobl i’ch helpu a dydyn nhw ddim yn gallu’ch helpu chi oherwydd dydyn nhw ddim yn gwybod sut i’ch helpu chi.

Simpson: Fy enw i ydy Owena Simpson a dwi’n un o’r uwch ddarlithwyr mewn nyrsio oedolion ac yn y sesiwn hon byddwn i’n gwneud therapi ymlacio, yn edrych ar reoli poen cronig.  Ces gymhwyster 20 mlynedd yn ôl a nghefndir ydy cardioleg a llawfeddygaeth cardiac a chyn dod i’r brifysgol roeddwn i’n nyrs yn arbenigo mewn methiant y galon.

Evans: Fel Nyrs Cardioleg beth allwch chi ddysgu nyrsus am boen cronig?

Simpson: Fel nyrsus oedolion rydyn ni’n awyddus, neu rydyn ni’n tueddu, yn gyntaf oll, i fynd at feddyginiaeth yn hytrach na chwilio am ffyrdd amgen i reoli poen; mae’n ymwneud â helpu cleifion i gydnabod bod ffyrdd eraill o reoli poen cronig yn hytrach na mynd at feddyginiaeth ar unwaith a’r holl sgîl effeithiau’sy’n dod yn dilyn hynny.

Evans: Ac mae ymlacio yn bwysig?

Simpson: Mae ymlacio yn bwysig iawn ac mae’n rhywbeth y gallwn ni oll ei wneud gyda chydig o ymarfer ac yn rhywbeth y gall pobl ei wneud gartref. Does dim angen pobl arbenigol; gallan nhw brynu gwahanol CDau a phrynu gwahanol gyfarpar a dod o hyd i rywbeth sy’n gweddu iddyn nhw.

Evans: Ac rydw i’n gwneud ac mae’n gweithio.

Simpson: [Yn chwerthin] ‘Wel, dyna ni. [I’r myfyrwyr] Ar y funud mae’n debyg – falle mai dyma’r adeg iawn neu’r adeg anghywir – ei bod yn brif adeg asesiadau ac ati felly mae un aseiniad wedi ei gyflwyno ac mae’r traethawd hir ar y gorwel. Felly ydych chi’n teimlo’r straen? Neu falle bod rhai ohonoch yn teimlo’n iawn. Ond mae arwyddion cudd falle eich bod? Pa fath o bethau? Crïo, cur pen ac anwydau byth a hefyd a theimlo’n nerfus yn gyffredinol. Ddim yn bod yn neis efo pobl eraill – felly falle’ch bod yn bigog efo pobl? Cwsg? Felly dyna’ch arwydd chi o fod dan straen. Bydd pobl eraill yn mynd i gysgu, yn deffro’n gynnar tra bo eraill methu mynd i gysgu. Felly rydyn ni i gyd yn delio â phethau’n wahanol. Briwiau ar y gwefus ac ati? Dyna un o’m rhai i. Ac ydy e’n iachus i ni fod dan straen ‘te? Na? Ddim o gwbl, byth? Oes angen i ni fod dan chydig o straen i godi yn y bore ac i wneud pethe? Felly mae chydig o straen yn iawn ac yn iachus ond y broblem ydy pan mae’n para. Ocê, os wnewch chi ddod o hyd i le ar y llawr ac fe gawn ni ymarfer rhai dulliau ymlacio. Bydd rhai ohonoch chi’n mynd i gysgu a rhai ohonoch chi ddim. Ydyn ni’n barod?

Parsons: Rwy’n mynd i ddangos y nodwydd aciwbigo ‘ma i chi. Peidiwch â phanicio, iawn? Dyma un fyddai’n cael ei ddefnyddio ar berson mawr iawn ar y pen ôl. Maen nhw’n nodwyddau dur gloyw tafladwy. Eu defnyddio unwaith ac yna’u taflu – mae hynny’n bwysig gydag aciwbigo. Peidiwch ag ailddefnyddio nodwyddau. Profiad y rhan fwyaf o bobl o nodwyddau yw cael pigiad, ynte? Os edrychwch chi ar y nodwydd fawr sy’n dod o amgylch – dwn i ddim ydy hi wedi’ch cyrraedd chi eto, ond byddai dwy o’r nodwyddau hynny’n mynd i mewn i’r lumen, twll y nodwydd pigiad werdd. Maen nhw wedi eu dylunio i lithro drwy’r meinwe ac nid i dorri meinwe. Beth all fod yn rhyfedd ydy dod o hyd i’r synnwyr o gael aciwbigo.

Wnes i ddysgu hyn oll yn y ‘90au ac ers y ‘90au mae sganiau fMRI (functional magnetic resonance imaging) wedi datblygu a gyda sganiau fMRI gallwn ddangos bod rhywbeth yn digwydd pan roddir nodwydd aciwbigo yng nghorff rhywun. Pan fo ymenydd rhywun yn cael ei ddeffro gan boen, mae ysgogiad aciwbigo yn cynhyrchu modd i ddiffodd y boen yna. Y dybiaeth ydy fod llwybrau opioid endogenig eich corff eich hun yn cael eu deffro – dyma’r cyffuriau yn eich corff sy’n debyg i morphine. Pan fyddwn ni’n rhoi morphine i bobl mae’r un peth yn digwydd, ond yn ddiddorol pan fyddwchc hi’n rhoi moddion ffug (placebo) mae’r un peth yn digwydd. Rydyn ni’n gwybod bod moddion ffug yn cael effaith enfawr ar boen cronig.  Defnyddir y rhain mewn milfeddygaeth ar gyfer moch a cheffylau a gwartheg. Nawr mae hyn yn ddiddorol oherwydd mae’n ymddangos ei fod yn gweithio – felly ydy ceffylau a moch yn gallu elwa o effaith y moddion ffug fel rhywun dynol? Yn seiliedig ar y data archwilio sydd gen i rwy’n credu bod rhywbeth yn mynd ymlaen gyda phoen nocidderbyngar oherwydd, yn fy mhrofiad i, mae’r bobl hynny roddais i aciwbigo iddyn nhw oedd â phoen nodweddiadol nocidderbyngar – cur pen, poen yn y cymalau, poen penglin, poenau gwaelod y cefn, wedi cael effaith buddiol heb lawdriniaeth. Ond y bobl hynny oedd â rhyw fath o elfen niwropathig, fel niwralgia ôl-hepatig neu sglerosis ymledol (multiple sclerosis) – doeddwn i ddim yn gallu eu helpu nhw gyda’u poen. Felly, rwy’n meddwl ei fod yn rhywbeth sy’n ymwneud â’r llwybrau opiad. Felly oes rhywun am gael tro? Mae’n rhyw fath o loes ysgafn onid yw e? Mae’n od onid yw e?

Evans: Ai dyma’r nyrsus fydd yn rhoi nodwyddau ynof fi nesaf?

Parsons: Mae’n un peth i roi poen i rywun arall – ond i’w gael e eich hun.

Parry: Tra’ch bod yn newid lle fe ddyweda’i stori am un o’r buddion i glaf oedd gen i. Roeddwn i’n nyrs staff mewn ysbyty gymunedol ddim yn bell o ble roeddwn i’n byw, a gweithiais yno am tua pum mlynedd ac roedden ni arfer â chael llawer o gleifion gyda phroblemau poen cronig – roedd llawer o gleifion yn dod yn ôl ac ymlaen am ofal seibiant. Roedd un claf wedi torri ei gefn ac roedd e arfer a dod yn ôl ac ymalen bob chwech wythnos. Roedd ganddo boen difrifol oherwydd gwingiadau yn eu goesau a chramp. O’r herwydd roedd e’n canu’r gloch tua 30 gwaith y nos – doedd e byth yn gallu cael noson dda o gwsg. Roedd yn symud o hyd ac roedd ei boen yn golygu nad oedd e byth yn gallu bod yn gyfforddus. Felly pan wnes i’r cwrs hwn es yn ôl a dweud, “Sut hoffech chi drio rhywbeth newydd?” Felly pan ddaeth i mewn, dywedais, “Iawn, beth am eich sortio chi allan – wnawn ni dylino eich coesau a gweld beth ddigwyddith.” Felly erbyn i ni orffen – byddai’n gorwedd yn y gwely fel hyn ac roedd e’n eitha doniol oherwydd roedd e arfer â rhegi’n ofnadwy ac am ryw reswm arferai â ngalw i yn Mo. Ddim yn siwr pam, ond byddai’n dweud, “Mo – Symud fi!” Felly dywedais i, “Gadewch i ni weld os allwch chi lwyddo i gysgu”, a wyddoch chi beth? Fe gysgodd! Ar ôl pythefnos o fod i mewn roedd gwahaniaeth mawr yn ei batrwm cysgu.

Yn anffodus dim ond 5 diwrnnod yr wythnos oeddwn i’n gweithio ac roedd rhai o’r rheiny yn ystod y dydd. Felly pan oeddwn i’n gweithio yn y dydd roeddwn i arfer â mynd yn ôl am 9yh, oherwydd mai dim ond lawr y ffordd roeddwn i’n byw, nôl fy merch oedd yn un ar y pryd, ei rhoi hi yn ei sedd arbennig a’i gadael yn y swyddfa a mynd i weithio ar ei goesau. Ond roedd gen i broblem foesegol gyda hyn yn y diwedd oherwydd pan aeth gartref am chwech wythnos cawsom broblem ofnadwy i geisio dod o hyd i rywun fyddai’n gwneud hyn. Ond yn y diwedd fe ddaethon ni o hyd i rywun a allai wneud hyn o dro i dro oherwydd roedd y buddion yn amlwg. Ac ambell waith roeddech chi ond am ddweud wrth bobl nad oes llawer wedi ei ysgrifennu ac nad oes llawer o dystiolaeth ymchwil go iawn ond mae’r dystiolaeth yna ac os edrychwch chi ar y budd i’r cleifion mae’n anhygoel. Roedd e’n esiampl dda iawn o sut y gall tylino weithio.

Evans: Dyna Maria Parry, uwch ddarlithydd mewn gofal lliniarol ym Mhrifysgol De Cymru. Nawr, y rhybudd arferol i fod yn ofalus – tra’n bod ni’n credu bod y wybodaeth a’r farn ar Airing Pain yn gywir ac yn gadarn, yn seiliedig ar y farn orau sydd ar gael – dylech bob amser ymgynghori â’ch gweithiwr iechyd proffesiynol ar unrhyw fater yn ymwneud â’ch iechyd a’ch lles. Ef neu hi yw’r unig berson sy’n eich adnabod chi a’ch amgylchiadau ac felly’n gallu gweithredu’n briodol ar eich rhan. Gellir lawrlwytho’r holl raglenni o wefan Pain Concern a gellir cael copïau ar CD yn uniongyrchol o Pain Concern. Mae’r holl fanylion cyswllt – pe baech am wneud sylw am y rhaglenni trwy flog, bwrdd negeseuon, ebost, Facebook, Twitter neu hyd yn oed ar bapur – yn ein gwefan: painconcern.org.uk. Dyma Maria Parry a’r geiriau olaf.

Parry: O edrych ar yr ochr liniarol, mae wedi rhoi mwy o syniadau i mi am ddefnyddio therapïau di-gyffur oherwydd y cyswllt rhwng hosbis a therapïau. Maen nhw’n cael eu defnyddio’n eang mewn gofal hosbis ac wedi eu cymeradwyo mewn gofal hosbis fel rhywbeth defnyddiol ac ambell waith rwy’n meddwl ei bod ychydig yn drist nad ydyn ni’n cydnabod y pethau hyn. Gall y therapïau eraill hyn fod mor ddefnyddiol i gleifion. Yn amlwg, mewn llawer canolfan gofal lliniarol, maen nhw am ddim felly gellir cyfeirio cleifion lliniarol yn aml at therapydd fydd yn rhoi sesiwn tylino iddyn nhw unwaith yr wythnos. Does dim rhaid iddyn nhw dalu amdano unwaith yr wythnos oherwydd weithiau rwy’n meddwl eu bod yn meddwl bod pobl â phoen cronig yn gallu cael gafael ar yr holl wasanaethau hyn ac mae hynny hefyd yn rhywbeth y dylen ni ystyried. Byddai’n braf gweld mwy o bobl, a dyna pam mae heddiw mor bwysig – eu bod yn gadael yma ac yn cofio’r tylino hyfryd a “O, ie, roedd e’n berthnasol i boen”.  Ac os mai’r cwbl wnawn nhw ydy rhoi’r ddau beth yna at ei gilydd yna rwy’n meddwl ein bod wedi gwneud rhywbeth sy’n ddefnyddiol mewn perthynas â chleifion mewn poen. Fel arall byddan nhw’n gadael a meddwl “Beth am roi morphine neu co-codamol iddyn nhw” neu beth bynnag ac ni fyddai hynny o reidrwydd o fudd i’r cleifion.


Cyfrannwyr:

  • Gareth Parsons, Uwch Ddarlithydd mewn Nyrsio Oedolion, Prifysgol Morgannwg
  • Maria Parry, Uwch Ddarlithydd mewn Gofal Lliniarol, Prifysgol Morgannwg
  • Owena Simpson, Uwch Ddarlithydd mewn Nyrsio Oedolion, Prifysgol Morgannwg.

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December sees the launch of a new e-PAIN programme designed to improve early diagnosis and management of pain. The multi-disciplinary programme is aimed at all NHS healthcare professionals who do not specialise in pain medicine, but regularly encounter patients suffering from acute or chronic pain. Dr Douglas Justins, Clinical Lead for e-PAIN, says: ‘This exciting and important project will help improve the recognition, assessment and safe treatment of unrelieved pain resulting in the significant improvement of patient care.’

e-PAIN consists of engaging and highly interactive learning sessions and assessments that cover how to:

  • recognise unrelieved acute and chronic pain
  • assess pain
  • manage pain
  • recognise and manage patient safety issues in relation to pain relieving techniques.

Also included within the programme are training modules on: basic pain management, basic pain science, pharmacological and non-pharmacological treatment, acute pain, neuropathic/nerve pain and cancer pain. All training is recorded in the learning management system and can be used as evidence of continuing professional development.

E-pain was developed by the Faculty of Pain Medicine, in partnership with the British Pain Society and e-Learning for Healthcare, and the official launch will be held on Tuesday 3rd December at the Royal College of Anaesthetists.  This launch will include demonstrations of the programme’s benefits to patients and health professionals, plus an opportunity for hands-on experience.

For more information please see the e-PAIN website.

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

To listen to this programme, please click here.

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

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

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

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

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

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

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

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

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

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

Parsons: Owena is going to be doing relaxation.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Ifan:: It’s lovely. Really nice.

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

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

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

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

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

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

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

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

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

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

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

Evans: And relaxation is important?

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

Evans: And I do and it does.

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

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

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

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

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

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

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

Evans: That’s Maria Parry, senior lecturer in palliative care at the University of South Wales. Now, I’ll just give you the usual words of caution – that whilst we believe that the information and opinions on Airing Pain are accurate and sound based on the best judgements available – you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf. All editions are available for download from Pain Concern’s website and CD copies can be obtained direct from Pain Concern. All the contact details – should you wish to make a comment about these programmes via our blog, message board, email, Facebook, Twitter or even pen and paper – are at our website: which is painconcern.org.uk. The last words are from Maria Parry.

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


Contributors:

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

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

[For a Welsh language transcript please click here.]

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

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

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

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

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


Contributors:

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

Peer Support. Join the community

“Having chronic pain is very lonely.”

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Everything you need to know about how to live with chronic pain

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“Having someone to help you prepare for your life through pain”

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

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

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

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

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

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


Contributors:

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

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“Having chronic pain is very lonely.”

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

To listen to this programme, please click here.

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

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

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

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

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

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

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

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

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

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

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

Evans: I don’t understand it either.

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

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

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

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

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

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

Evans: Put it away?

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

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

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

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

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

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

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

Evans: Well there you are.

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

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

Burch: Yeah.

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

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

Evans: It’s exhausting.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Evans: Could you explain what that is?

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

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

Vuckovic: Yes.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Nisbet: I’ve already suggested it.

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

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

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

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


Contributors:

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

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