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 who live with pain. This edition is made possible by Pain Concern's supporters and friends. More information on fundraising efforts is available on our Just Giving page at painconcern.org.uk. I know the pain won't go, but if I can just at least manage to not be anxious as much, my pain level might just... Drop a wee tiny bit, and then I maybe have my work, my son, and maybe a wee bit of time, me time. Not too much, because I couldn't do a lot of things, but I know that there's a time in the month of the week that is for me, and that will be a big achievement for me. In today's edition of Earring Pain, we're responding to questions pain concerns received about pain management programmes, what they are, and how they can help.
Not all pain management programmes are the same. Some, like the one at Bronllys Hospital in Mid-Wales, featured in Programme 5 and still available for download at painconcern.org.uk, are residential. Others may be run on a day per week basis, say over several months. Now, the Glasgow Pain Management programme is run over 12 weeks, and I paid them a visit where the first person I spoke to was its clinical lead, consultant clinical psychologist Martin Dunbar. It aims to improve the quality of life of people with pain, and explicitly we understand that we're unlikely to make much improvement to the pain itself. Often the rest of their life has to some degree fallen apart whilst they've been pursuing treatments and strategies to help reduce their pain, and we help them find ways to build their lives back up again.
We call it a values-based and an acceptance-based programme. So the focus is on looking at things that matter to the patients, getting them to think quite hard about that and think hard about the way that they're not living the life that they wanted to live or that they would choose to live because of their pain. And then we help them set some goals to work towards getting some of that life back. There's physiotherapists and psychologists and some medical and nursing input. And a lot of that is around helping reduce the barriers to getting those important bits of their life back. So we're not curing them then? We're not curing them.
We have evidence to show that their pain doesn't actually improve, and this is in line with our expectations, but what does change is that people are more active, and we have evidence of that, and they are more confident around their pain, they have a better understanding of it, and they are happier and less anxious generally. I'm Christine Thomas. I've got neck and shoulder pain, but it's never been diagnosed. It just came on spontaneously. Initially, I thought it was a heart attack because the pain was down my left arm. I lost use in my left arm. Nerve pain. Couldn't even hold a cup of coffee, let alone lift it up in my mouth. That was two and a half years ago.
I'm still employed. I hadn't worked since the day it happened, and it's completely changed my life. How did it start? Pain across my collarbone, and I was going to see my GP to get it checked out, and that day everything just flared up, and I got sent straight to hospital. And they put it down to stress for the first six months, so I didn't get properly looked at until my own GP put things in motion. I've had MRI scans, X-rays, and nothing's shown up at all. They've said I'm one of the 5% that we'll never be able to diagnose. It's difficult because, particularly with neck pain, nobody really believes you. Officials don't believe you. I don't receive any benefits because...
I'm not sick enough. I'm not in my pain. I can't get people to believe me. Even though they can see that I can't do anything, they'll not say, right, you've qualified for this benefit. So how did you come to be referred to the Glasgow Pain Management Programme? Through the pain clinic at Stockholm Hospital in Glasgow. They referred me. And what is it doing for you? Well, it's great meeting other people who have exactly the same side effects and knowing that it's not just me. It's maybe more confident in explaining to other people that this is just part of having pain and that...
I'm not the only one and I'm constantly getting pushed to see other doctors and other specialists by family, but they don't realise that I've done everything that I can. Last time we talked about the different types of medication, how they should be used and what they can be used in conjunction with, those kind of things. This week what we will do is we will talk more about how to manage a medication effectively and also to talk a little bit about if you're ever to rationalise your medication. Because very often when we take medication for a long time we almost get a wee bit kind of complacent. Over the years things get added in and things get added in a little bit more.
I think it's very beneficial to every so often just to kind of have a review of what you're taking and what you're taking it for and how effective you think it is. My name is Lynn Watson and I am the nurse with the Glasgow Pain Management Programme. My biggest responsibility, I guess, is to deliver some of the presentations, particularly the more medically orientated one, medication orientated one. So I deliver a couple of talks on medication, how to optimise it and also general information on medication as a whole. I also give...
some general talks on managing appointments. I see patients individually if they have any specific medication issues. You talk about managing appointments. What can you tell people about how to manage an appointment? Surely just make an appointment. Past experiences have probably made people quite anxious about getting information and receiving information from the medical profession, whether that be their GPs, nurses, physiotherapists or consultants within the hospital. That can cause a lot of anxiety, which can mean that they perhaps don't optimise their appointments.
when they have them. So we give them general advice, very basic advice, but it can often be quite helpful to enable them to get the most out of the appointments that they have. Things like being prepared, having all the information that they require written down. Very often when you go into an appointment, you get a little bit flustered, you forget things. So having things written down is very helpful, particularly lists of medication. That saves a lot of time, which then means that you're left with more time to discuss the issues that you have. Taking people along with you if you find that you're likely to forget things or you just want a little bit of moral support. Although what I would say with that is always make sure it's somebody that you trust.
and perhaps somebody that's not going to take over your appointment for you, but somebody there to act as a support. Because very often you forget a lot of the information that you're given, and it can be quite helpful to have somebody there to remember another part of the conversation as well. I suppose it might be quite easy to misinterpret what your doctor's told you. Absolutely, and that's again where it's quite helpful to have somebody else there. They might perceive the information that's been provided for you differently. Also another way around that is asking doctors, physiotherapists, nurses, whoever it is that you're seeing, to write information down for you, so that you can then go away and think about it.
with a more clear head. A lady gave a very good example of misunderstanding or perhaps misrepresenting information. Both her daughter and herself went in, heard exactly the same information from a consultant. She came out feeling quite downbeat, a little bit upset. Her daughter came out feeling quite upbeat. And when they discussed it, they actually realised that it could perhaps have been that low mood, feeling anxious. All of these things also play a part in how we perceive information that's provided for us.
My name is Caroline McGrory and I have fibromyalgia. How long have you had that? Two years. And how does it affect you? It affects my whole life, the impact that it's had. I was working, I was employed and I had an accident to my shoulder. I got an operation on it and a year later I had widespread body pain, sheer exhaustion and I didn't know it was wrong. I had excruciating pain in my right ribs. I went to my GP and she referred me to...
surgical doctor in the hospital who checked my liver, my kidneys, my gallbladder because of this right-sided pain and everything was coming back normal. Now this was very frustrating for me because I knew that I had this widespread body pain, sheer exhaustion, you know, and I do have arthritis in my back. I've had that for 10 years and I could cope with that but this pain was different. It was controlling me rather than me controlling it and results coming back from the hospital was very frustrating, really depressing me and my family. Every test I went for I came back home.
Told them, you know, everything was fine. Don't get me wrong, I was pleased that my internal organs were fine. And then it took about a year for them to say that this is what was causing it. It was neurological pain, chronic nerve pain, polymyalgia. But every one of these symptoms is related to fibromyalgia. Can you describe the pain? Oh, it's excruciating. It's like your whole skeleton is on fire. I mean, this is my personal experience. All my skeleton was burning. Shooting pains, stabbing pains. Pain totally excruciating. I couldn't walk.
It was hard to take steps. At that time I thought I needed a chair to get about. You couldn't get ready in the morning, you couldn't get undressed at night without help because the pain was so bad. And I mean from head to toe, every part of your body, your elbows, your jaws, your whole torso. It was very hard for me except after working. I used to have a pedometer on and walked for miles. Can't do that now. We're on the eighth day of the Glasgow Pain Management Programme. How is that helping you? Well, it's helped me because when I was diagnosed with this at first, I felt very isolated.
I felt that I was the only person that had this condition and was suffering it. And then when I was referred here to the pain management and I spoke to the other people, it was like a weight off my shoulders because I thought, well, I'm not the only one with this condition. And the staff, you know, the advice they're given, the information, it's been very helpful to me and I feel uplifted since I've came here. get on the programme in the first place? We only accept referrals from the secondary care pain service. That's the hospital doctors who deal with pain. Not just the doctors, though, because it's a multidisciplinary team there, so we accept referrals from the physiotherapists and psychologists and nurses who work in those teams as well. And it's simply a case of filling in a referral form. But people should ask for it? Most certainly. We have had people approach us who are not in the pain service, and we kind of explain to them that they should go to their doctor and say, I'm interested in the self-management approach, I understand I have to go to the pain service first. And we get their GP to flag up.
They're interested in self-management so that they don't get caught up in a lot of medical treatments that they don't particularly want. So they maybe get referred to us more quickly. How do you assess people to come on the programme? We have a joint psychology and physiotherapy assessment that takes about an hour and a half. Obviously the referral, we get quite a lot of information on that about the patient, so we've got a pretty clear idea of their history. We're looking for different things in the assessment perhaps than has been looked in at the other assessments that they may have had. We're trying to gauge people's understanding of what has happened to them, any unresolved issues they feel might be there that might hold them back.
people's willingness to try different approaches, to maybe set goals even in the context of having a crippling painful condition, how physically able they are as well, and one of the things that the physiotherapy assessment does is to make sure that there are no treatable musculoskeletal conditions that could be dealt with as well. So we are trying to maximise people's benefit from the programme. My quality of life is really null and void as I feel. I'm quite a sociable person and socialised at the weekends, but now, due to the drugs, I can't do that. Because I take my medication in the morning and I take it at night. And come nine o'clock, I'm ready for bed because I'm so tired. So that's had a huge impact on my social life. Holidays, you think, oh, no, I couldn't sit in a plane for two hours or an hour, I'd be too sore. What about my medication? The first thing you think is pain.
It really controls your life, and I worked in a healthcare environment. It's taken me up until now for two years to accept it, because I couldn't accept it. I kept thinking, one day I'll wake up and it'll be away, but it never goes away. This was the last resort for me. It's a horrible phrase, the last resort. Do you think perhaps it should have been the first resort? Oh, yes.
I heard the expression earlier that this was a last result for many people. Yes, I don't think it is. And in fact, we've been encouraging our colleagues to refer people earlier in their journey. We've just recently started a shorter programme as well for people who are earlier. And as a consequence of not having had pain for so long, they are usually less depressed and less disabled and limited by their pain. So we have a specific programme to deal with those people at the earliest stages. But I think some of it is there is a kind of medical desire to try and diagnose, treat and cure people. And those processes take time and patients frequently.
If you can obviously get a diagnosis that's going to lead to a cure, then patients will pursue that with all their efforts until coming round to the realisation and acceptance that actually maybe this isn't going to change and that other things need to be addressed like their quality of life. So acceptance is an important word? Massively important. It's a word with so many meanings. It has negative connotations for some of our patients and that has to be tackled head on. Some people see it as a sign of giving up.
our retort to that would be you can continue pursuing avenues of investigations and treatments but it really is diminishing returns and we demonstrate that to our patients by talking through their own histories but there's another another side of acceptance which is more allowing the pain and suffering in and not getting kind of caught up with that all the time and devoting one all of one's attention and energy to try to minimize that pain and rather accepting seeing if it can be lived within and often to patients' surprise, when they start to move down that acceptance road, they realise, actually, if I accept it, it doesn't get any worse, but it allows me to do much more in other avenues that are important to me. So that's why it's so important. I think it's the initial stage, really. So do you find that the people who come on the course, they've been to hell and back, they've come to hell, if you like, and now you want to find a way back out of hell for them? Yes, it is about bringing them back into life, really, I think. Our logo has this tree starting to flower again. That would be our approach, yeah.
I'm Lisa and I've been living in this country for 25 years and I was a lecturer. And I started having this terrible pain four and a half years ago, I think, and run from one physiotherapist to one doctor to bought loads and loads from shoes to cushions to God knows what and spent a lot of money in all different treatments. And then last year I felt I can't cope with in my job, plus the pain because I was in constant pain and came to a point where I said I can't anyway, I couldn't. So I took early retirement and thought that's it. And that led to quite a lot of depression because I didn't really want to stop working. I felt I'm not that old. I could still do a year or two. And I really have to say I'm very, very thankful for this course because it changed me. When I retired, I was just hanging around in the house, thought, I don't do anything. So, you know, my body doesn't have to move. And it was terrible. I put on weight. I became more and more depressed. I didn't go out anywhere. I just really was stuck at home saying, I'm so ill now. I'm Vera Elders. I'm the assist psychologist in a pain management program in Glasgow.
You took a mindfulness session. I did, yes. Tell me what mindfulness is. What stems from a Buddhist practice. It's really about becoming more aware of yourself, of your own physical sensations, emotions, and not only gaining an awareness of yourself, but also accepting all the physical sensations, emotions, and not judging them. It sounds, I suppose, quite abstract in a way, but I suppose in a day and age when we're all bombarded with lots of different stimuli all day long, I think quite often we forget to be in the here and now. I don't understand what you mean by not judging your emotions and physical sensations.
It's a difficult one, isn't it? I think quite often we can get stuck in loops of I should be doing this or I could be doing this or what will this other person think or they said this about me and you can spend an awful lot of time struggling with those thoughts and spend a lot of energy really, mind reading or fortune telling and sometimes by just allowing the thoughts to be present and not judging them and not spending that time warring with yourself and just letting them be and moving onwards, it can give you a bit of space to be here and now. So the session you took with the participants on the pain management course, that was very much... being in here and now with your breathing? Yeah so we do quite a number of practices that take perhaps a little bit longer but of course we're all plagued by our own thoughts and our minds wander and sometimes it can be quite difficult to bring your thoughts back to the exercise. I personally find it's hard to just go straight back into an exercise if I've been wondering about what I'm going to have for tea tonight so sometimes the breathing exercise is a nice way to anchor yourself back because it's often easier to focus on the breathing first and once you sort of back into that rhythm you can then go back on to whatever exercise that you're doing. We do everything from mindful walking to mindful exercise to mindful eating, we do a body scan, we do a broadening awareness which is a...
practice in which you focus first on some of the more unpleasant sensations in your body followed by focusing on some of the pleasant sensations which can be nice because if you're quite often focused on all the negative sometimes we forget that there might be other parts in your body that actually my left arm feels quite nice today so but it's very we're asking a lot from people to focus on on the pain I'm Geraldine McVicker. The pain has been a problem for some few years. What's the cause of the pain? They say there's some kind of twist on the spine. I don't think they really know themselves, but it's constant and it just limits your quality of life. And how long have you had this pain? Since 2007. And it's taken five years to...? To get to here. What are they teaching you here that you didn't know before? Even just to manage your anxiety, your mindset, how you approach things, not to be fearful as much as I have been. So I find wee bits have been helping me just in my thought processes.
and that's made a bit of a difference. Hi, I'm Margaret Boyle. I've had pain for about 14 years now. So it's a 12-week management programme, and you're on week eight, three quarters of the way through. What have you got out of it so far? I can't say a lot. I'm still in pain every day. I had an accident. I did a backflip, and I tore all the ligaments in my neck and right along my shoulders.
The mindfulness is quite good. I work full-time as well. I don't have a lot of time to practise all these things, and it's probably my fault as well. I don't make a lot of time. Do you think it would teach you to stop saying it's your fault? I don't know. It's a positive wee course. I'll always say to people, I'm not getting nothing out of this, but the people that know me, you know, my family and my friends, obviously say I am. They can see a slight difference. So what can they see? Well, I'm probably more positive, confident.
I'm a wee bit more outgoing than I was. I don't really know, it's hard to put your finger on it, but you feel something. I think maybe in the first few weeks, the way they were talking, it was like, you know what, this is not really for me. I'm not really getting into this. But I think probably in the last two weeks, it's hit a point where you're picking it up. And maybe like you were saying, it's maybe not making big differences at this point in time, but I think even being in work.
When things would make me really anxious and stressed and going home, now in the last two weeks, I'm like, I don't care. My boss says to me, I work in customer services and I've got a lot of cheeky people. And the past couple of weeks, she's like, if I can. You see, that's the effect. Yeah. But they noticed that and they realised that. Because I used to maybe take it personal. You know, the comments they would say, but now they say them. I didn't realise that. All of the medicals were more vocal.
Really? I can see a big change in you. Maybe you can, but we all can today. I'm Lauren McLaren, and I've had back pain, chronic pain, for about seven or eight years now. You were saying that you can see the difference in Margaret. What can you see in her at the end of week eight that wasn't there at the start of week one? Probably because she was willing to listen.
Because you weren't in week one. That was the one thing. Week one, you could just tell it wasn't for you at all. And I didn't think, out of all of it, I thought you might be the first one to go. Did you really? I did, yes. And the ones that have now been and gone, I thought might have stayed. You're smiling. Ah, yes. You're smiling all the time. That's a big difference. I was speaking to one of the people on the course earlier. When I started talking to her, she thought she wasn't getting much out of it. But then she suddenly said, oh, but my family and friends do. Partners suffer with chronic pain as much as the people with chronic pain. That's definitely fair to say.
It is something that we address here. We address it in a number of ways. Well, the patients address it, principally. Early on in the programme, we get people to think about what matters to them. And as you might expect, time and time again, family relationships come up as part of that. People say to us, that's the area that's not working very well in my life, and it really bothers me that it's not working. And so we go on to help people set goals to kind of try and set those bits of their life back on track. And that can be things like spending more time with partners. We had a lady recently who her goal was to have a weekly date night with her husband. She felt that her marriage had suffered so much because of her pain problem.
So there's those kinds of things that frequently comes up about people taking grandchildren to the park might be one of their goals. Doing more for my husband so he doesn't have to do so much around the house. These kinds of goals are set by patients on the programme time and time again. We also have recently started an information class for family and friends of people coming here, principally with the aim of helping them to understand what their loved one is going through and giving them advice on how they might be able to help them. But I'm sure that they get some benefit from that contact with us as well.
Do you keep track of people after they've left? Once they complete the 12-week programme, we invite them to return three months later for an individual review session where we catch up with how they're getting on, the different things that we've talked about in the programme, but also generally any issues that they've had, any difficulties. We tend to troubleshoot any problems that they might have had, point them in the direction of perhaps other agencies that might be able to help them. And then we invite them back again three months later for a six-month top-up session, which is a kind of refresher, if you like, where a couple of groups will come along and we will... go over a lot of the things that we've talked about, find out how people are getting on. It's also quite helpful and it enables them to see people from the group that they've been with and also people in other groups and learn from them as well. Lynne Watson. Now, before we end this edition of Airing Pain at the Glasgow Pain Management Programme, I just need to 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.
And don't forget that you can still download all previous editions of Airing Pain from painconcern.org.uk. You can also get CD copies from Pain Concern, and all contact details are on the website. If you'd 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, and of course pen and paper. So to end this edition of Airing Pain from the Glasgow Pain Management Programme, this is what some of the participants had to say about it. I thought, oh, nothing's going to help me, but when I did come, I have enjoyed it. You know, as I say, meeting other people, the staff are excellent, and the advice that they've gave has been very beneficial. It's been fantastic. It's really made me change the way I think about pain, and the mindfulness is really good. It just helps to calm you down and takes your mind off your pain, and then you can go on and do other things. It just made me change the way I think about everything in general. My family can see a difference in me.
It's all down to the people here. It really is. I know the pain won't go, but if I can just at least manage to not be anxious as much, my pain level might just drop a wee tiny bit, and then I maybe have my work, my son, and maybe a wee bit of time, me time. Not too much, because I couldn't do a lot of things, but I know that there's a time in the month or the week that is for me, and that will be a big achievement for me. I hope that many more people can take part in this course. I really mean it.