A National Migraine Centre Heads Up Podcast transcript
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[00:00:06] Welcome to the Head’s Up podcast brought to you by the National Migraine Centre, the only UK charity treating migraine and headache.
Dr Katy Munro [00:00:16] Hello and welcome to this episode of Head’s Up podcast. I’m Dr. Katy Munro and my colleague, Dr. Briscoe, who normally joins me, can’t be with us today. So we’re missing her. But I’m very, very delighted to say that I have got two excellent guests. So our topic today is talking about migraine and self-management, and we’ll probably touch on how that broadens out to chronic pain and maybe other areas, because my guests have got some great expertise to share and some practical tips. So I’m here with Sophie Mitchell and Anne-Marie Logan. So would you like to say a bit about yourself, Sophie?
Sophie Mitchell [00:00:56] Hi, I’m Sophie. I’m the clinical psychologist for the Headache Group at the National Hospital for Neurology and Neurosurgery. So I have worked in headaches for some years, come from a paediatrics team. And I’ve also worked in general chronic pain services as well. So that’s how I go into the area.
Dr Katy Munro [00:01:17] And Anne-Marie.
Anne-Marie Logan [00:01:21] I’m Anne-Marie Logan, I’m the consultant physiotherapist at the headache team at St George’s Hospital in London, and I have been interested in self management for many years. I used to work in other pain conditions, but moved into the headache service about 10 years ago and my interest is in migraine and I’m currently a predoctoral fellow with the NIHR, doing some research in self management.
Dr Katy Munro [00:01:51] Which is really excellent to hear because I think one of the things we’ve heard over and over in clinics, I’m sure all of us, is that people want to learn how to manage their own headaches. And I think one thing I’ve noticed about migraine- people with migraine and including myself as a migraine sufferer is that you want to look for every way that you can to help yourself. And sometimes in busy surgeries and hospital clinics, I think it’s very easy for that bit to be kind of squeezed out. So it’s really excellent. This is why we wanted to do this episode, because I think it’s so important. Do you want to just tell us a little bit about how you approach, Anne-Marie, at George’s if a patient comes in, if they’re referred to the headache clinic, do they see you first or do they go to the consultant then get referred to you? How does it work?
Anne-Marie Logan [00:02:46] My role is very much like any of the headache nurses, which is a headache nurse role in spite of being a physio. And so it’s the same in our clinic as in every other headache clinic in the country. I suppose my interest is because I’m a physio, I’m interested in self-management, and we try and integrate self-management in the way we treat patients. And I suppose this is what we’re thinking about today is how self-management is an integrated part of migraine care. Self-management has already got three parts to it, its medical management, its emotional management and its physical management. And those three parts are in in every consultation, and that is whether it’s with the doctors or with the nurses or with the physio. And Sophie I know that’s part of the way you think about it as well, isn’t it?
Sophie Mitchell [00:03:54] I think it’s- maybe this is a good time to kind of touch on the fact that we both have job titles that might necessarily not be that well known within the headache sphere as a psychologist and a physio or I guess how that comes across and has lots of different ideas linked to it. And so in particularly as a psychologist, I meet lots of people who are horrified as soon as I say my job title and think that comes with lots of fear and lots of ideas around that I might be there to tell them that they’re making it up, that’s it all in their head, that it’s because they’re mad. I come across a lot of these beliefs. But actually, really, I’m here because we know that a headache condition isn’t just something that happens in the body, but affects a whole range of different parts of you and your life. And in turn, some of those factors can make life of a headache condition more difficult. Say, for instance, living with a headache condition is really stressful and we know the stress can make your symptoms worse. And so we’re here to kind of support that. And I guess it’s really helpful to have a whole team approach in looking at all those different parts of each person and what it means to live with migraine or a headache condition.
Dr Katy Munro [00:05:10] And I think that’s right isn’t it. It’s not about saying, ‘oh, you’re suffering from migraine, so you need to go and see a psychologist to get yourself sorted out, to pull yourself together.’ It’s not that, is it. It’s definitely not that. It’s about saying everything about migraine affects every aspect of your life. And the way that you think about how it affects you can make it either easier to cope with or sometimes put some more difficulties for people. So self-management is that something that once you’ve told people ‘do this’, then they’re fine and they go off and do it. And that’s helpful? Is it something you have to kind of teach them? How would you both go about teaching self-management?
Sophie Mitchell [00:05:59] So I guess because my role is often quite specific and it’s always quite difficult to go and see a psychologist and to access that. And so how I often think about self-management is by working directly with people on a one to one and or within a group. Obviously the role of a psychologist is also to help the team to think about that for their patients as well. And so I guess it’s difficult in that when we’re thinking about self-management, there are ways in which you can go about thinking about that, even if you can’t access a psychologist? So there’s lots of resources so we can give links for and kind of ways that people can analyse things, because sometimes they might feel like they would rather go and read a book or look at different YouTube things and just to take that on themselves. And I think we have to respect where people are at with that.
Dr Katy Munro [00:07:01] People learn in different ways don’t they? You know, some people like to go away and read up about things and other people are much more visual and rather watch on YouTube.
Sophie Mitchell [00:07:13] Yeah, yeah definitely. And I think, you know, that we’re thinking about self-management as really a range of different strategies in order to kind of cope with a condition or to cope with the symptoms or with the effect that they have on your life. So it’s a little bit like thinking, well, if you were going to walk up a mountain, you wouldn’t go with all the right tools in your bag and to kind of know how you’re going to face that. And really what we’re trying to do is to skill people up so that they feel more confident to manage their condition, to cope with it, but also to feel like they can live their life that they want to live despite and with their symptoms.
Dr Katy Munro [00:07:53] Yeah.
Sophie Mitchell [00:07:54] So it’s not necessarily that there’s a whole range of strategies that we would say ‘this is what you have to do in order to to live with a headache condition’, because it’s really different for everyone depending on their circumstances. But a bit like if you thought about- I often think about this, like if you had a tool kit or you had a makeup bag, you don’t when you’re going into a project or you’re kind of doing your face for the day, you don’t use every single thing within the bag at the same time. Actually, there might be times in which you have to use different things. So it’s really about skilling people up so that they feel that there’s a range of different things that they can have at different times, depending on a whole range of factors. So that might be what level they’re at within their journey, maybe with, you know, depending on how many attacks they have. Whether they’re a child, adult, young person there’s all these different factors that we have to bring into it when we think about how someone can use self-management.
Anne-Marie Logan [00:09:03] What’s interesting about that is that you can take those principles and so you could have really, really severe headaches, so the people that Sophie and I might see have really, really severe headaches. But the same principles apply even if you don’t have very many headaches. So it might be that those principles would apply if around- for someone with migraine around the time of their period, they didn’t have many, many headaches. But actually those pacing and those self-management principles that we might talk about in a minute, you’d put those into place just around a time when it was really difficult for you, then you’d let them go again and then you put them in place again at a different time and actually don’t have very many migraines. And so this isn’t just reserved for people who are really bad. And I think sometimes self management gets bad press because it’ssort of thought- I’ve had patients tell me, ‘well, you know, you’ve given up on me. You’re telling me it’s self-management because medicines have failed.’ And that’s so not true. It’s there because- it’s there to augment the medicines. Medicines are very much part of this. It’s how to make them work better.
Dr Katy Munro [00:10:23] I think Jessica and I are very much of the opinion that when we’re seeing patients in the clinic that we’re talking to them about the things they can do to help themselves. But also then we’ll go to a plan. And now you might want to keep an acute rescue treatment with you. But I love the idea of having that tool kit that you can pick and choose of the strategies that you use. Pace yourself or to relax yourself, whatever, when you’re in a high risk time, because it’s those high risk times that they really can make the difference, can’t they? If you’ve got some good strategies to step back or make your headache or your irritable brain step back from that threshold, which is going to trigger a migraine attack to happen.
Anne-Marie Logan [00:11:08] So I’ve had patients say to me ‘I’ve made a working plan.’ And it’s such a nice idea that if you’ve got your own toolkit, you’ve got your working plan, and that changes and your skill set changes over the years. But that plan is very much a working plan and it’s a skill that you develop over time, but it really helps to really hone your skills to make your migraine care better.
Dr Katy Munro [00:11:39] So you have to in the same way that if you were a physio who was treating people with the weak leg muscles, you’d be giving them muscle exercises when you’re beating them with self-management exercises. They need to be putting in some practise.
Anne-Marie Logan [00:11:54] And I suppose that’s what brought me to it, because the skill sets are very similar. If you were in back pain or whatever it’s the same skill sets all the way through. And I work in headache now and I can really see those cross themes.
Sophie Mitchell [00:12:14] It is important, I guess to recognise that this idea of how self-management can be used alongside medical treatment to help people is really shown by research. But that’s what we know kind of gets the best outcomes for people in terms of not just about the pain and symptoms, but also about their wellbeing within living with a condition that actually time and time again, this research is telling us that if people can learn different skills be it physical or psychological, that that gives them the best chance when they’re also using their medication alongside that.
Dr Katy Munro [00:12:57] Some of the techniques, I’m guessing can extend to other aspects of their lives as well, can’t they?
Sophie Mitchell [00:13:01] Definitely.
Dr Katy Munro [00:13:01] They’re just useful tools for people to know how to use. When I was a GP, I was a GP in Potters Bar for many years and I had an interest- I saw a lot of patients with chronic pain and the local physios in Barnet General used to run a course for people with chronic pain. And it was exactly the same sort of thing about learning to live with enjoying your life, but going forward knowing that you’ve got that pain, but you’re managing it rather than the pain being overwhelming, encompassing your- dominating your own life. It’s about changing the balance of the way that you perceive it sometimes, isn’t it? So I find that was really fascinating. So can we come on to just talking about the basic things. You’ve mentioned already, something called pacing. I think people might like to hear what are the different kinds of skills that you would do. So what would pacing involve?
Sophie Mitchell [00:14:00] So essentially, I guess to kind of give context to that is that there’s a pattern we often see for people who live with the chronic conditions so within actually all kind of forms, is a pattern called boom and bust. So this is where we kind of wait for a good day. And then on that good day, we think we’re going to do all the things that I’ve been missing out on. Finally my pain’s a bit better. So I really need to catch up with the work that I missed yesterday. Finally, I can help the kids with their the homework, I can also reschedule all my plans with friends that I missed. So we kind of go and go and go and we can keep that up. For some people, that will be a matter of hours all the way to other people that would be a matter of months. So it kind of really varies. But inevitably what happens is that we kind of experience this crash then that we’ve kind of gone and gone for too long and then the body kind of needs to stop. So then there’ll be this bust, which is when that kind of rest happens. So, for instance, our symptoms get worse. We then miss days off school/work, for instance, feel like we can’t do anything because of the pain. And then we have some time to kind of recover. And then from that- after that, we feel, oh, finally, I’m feeling a bit better. So again, I’m going to go and catch up on all the things I’ve missed. These patterns are kind of really, really natural for people to do. I think we do all kind of do the same if we in the same position. So what pacing does is essentially tries to counteract that. So it’s the idea of perhaps doing a bit less than you would like to do on a really good day, but a bit more than you would do on a really bad day. So rather than kind of swinging between these highs and lows it’s about keeping things at a more even keel. And what we might have to start kind of really small with actually what we find over time is the amount that you can do it increases over time. Whereas if you fall into these boom and bust patterns, it can be quite easy for your threshold to go down, so that’s what we’re trying to achieve through pacing.
Dr Katy Munro [00:16:09] So you can actually make yourself worse by rushing about trying to do every single thing that you couldn’t do the day before because you were in bed with a migraine and then you’re suddenly exhausted. The plugs pulled out from your energy centre. And you really feel it. That it’s so- I hear that so often and I recognise it as a pattern that people do.
Anne-Marie Logan [00:16:32] But I think if you were going to- in the people who have occasional migraines, I think transferring that over, the people who have Saturday migraines or the people who have it at a big event, the the way of transferring that is to think about understanding that that’s a pattern for you and the emotional- I could probably say, Sophie could probably say this in a much better psychologist way, but that the anxiety and the stress of an impending event will contribute to that difficulty of a big event coming. And so by planning that and taking and pacing events up to the Saturday or to the big event, you can reduce the trigger for the migraine or you can reduce the angst that comes- that leads up to the event. So generally, by planning your time up to the event, you can make it easier. So you hear people with migraine saying I had- things like I had a period and I had a big deadline and I had an argument with someone and it created a perfect storm and then I had a massive migraine and I was out for three days. While they couldn’t have stopped the argument possibly, you can, by planning the fact that you knew when your period was going to happen and you knew you had a big event, you can plan some of the ways out of this and in someone with episodic migraine, you can pace a little bit because you can plan your timing of things. And so for people who don’t have migraines very often, that’s how you can take those components of pacing into those components.
Dr Katy Munro [00:18:29] I hear from people quite commonly that they always get migraine when they go on holiday and the other big trigger, I think, is weddings. If you’re going to a wedding because you get all excited, rushing about, trying to get ready, maybe have a journey, maybe have quite a long period of time where you’re not given anything to eat because you’re watching the bride and groom do their thing. Back in the day when that was a thing and we could go to weddings, obviously, and then somebody puts a glass of champagne in your hands, another trigger. So I think your examples are really good because I think people need to really kind of be aware of all of the things that contribute, don’t they, and all of the things- and there are some things they can control and there are some things they can’t control, like the argument, you just don’t know when things like that will pop up.
Anne-Marie Logan [00:19:20] If you think about the three components of self-management. It’s physical, it’s emotional, it’s medicines. It’s all of those. And you’re thinking about those components. So if you know that’s going to happen, you make sure you’ve got your prescriptions to hand. You have your medicines with you. You know that you’re going to try and make sure that you eat on time. So you’re thinking about your body, you’re thinking about the emotional side. Maybe if you’re going to have that difficult conversation, maybe that’s not the day to do it, or you’re thinking about how you’re going to have a response or- so it’s thinking about you know a stool has three legs. It’s those three components all the time. And I think we sort of think that self-management is for other people, but actually it’s for all of us with migraine at every stage, whether we have really bad migraines or whether we have, you know, not very often migraines.
Dr Katy Munro [00:20:14] Because, you’d only need to take one of those legs away of the stool and you’d be falling down, wouldn’t you.
Anne-Marie Logan [00:20:19] Absolutely.
Dr Katy Munro [00:20:19] I like that image. I’m going to steal that, Anne-Marie, I think.
Anne-Marie Logan [00:20:19] Yeah, you’re welcome.
Sophie Mitchell [00:20:19] I think it brings a really good point actually because, you know, we’re kind of talking about triggers as soon as we talk about self-management. And I think for lots of people that feels that the quite common route into self-management is to think about my triggers and therefore try to avoid those triggers. But actually, you know, I guess trying to think about that a little bit more is what does that bring to your quality of life? If you avoid every possible trigger, A) is that possible? And, B), what else do you lose out if you do that? So, for instance, if we say that stress is a very, very common trigger and so the one way I could deal with that is just to avoid every single situation that I find stressful, I won’t interact with anyone who causes me any stress. And actually, the reality of life means that that isn’t possible, but equally that I might miss out on things that are quite big and stressful so, for instance, going to weddings, then I wouldn’t be able to connect with the people that mean the most to me in life. So we have to kind of think about that in a really delicate and tricky way. But just to try and be honest around what is and isn’t possible. And i think this kind of represents that there are a lot of different barriers that come up as soon as we think about these self-management strategies, that it’s really easy for us to sit there and say, whoa, we need to think about pacing. You need to think about how much you’re doing during the week and on the lead up to that. And actually, lots of people find that either the reality of that is when they’re parenting and also managing work, for instance, can be tricky or that there are sometimes different psychological barriers that come up for that. So, for instance, people who have lots of perfectionistic beliefs and that they like things to be done, 110 percent actually it can be really hard to let go enough to pace things out. So I think it’s really worth just kind of recognising what comes up for you as you think about your self-management and think about maybe what needs a little bit more support and maybe through psychological therapy or through other self-help resources.
Anne-Marie Logan [00:22:44] Yeah, I think that’s that’s really important. And I think that’s often the first thing to do. And certainly the groups i’ve run before is to work out what the baseline is, where you’re at. And often we use headache diaries don’t we as a sort of- to look at your baseline. But what we talked about before was to talk to your group, your friends and your family, because often they realise more than you do. I’ve had headaches all my life and sometimes I didn’t realise what the situation is, whereas my family or my friends might realise and they might realise that I’m being a bit more avoidant or I’m taking more medicines than I would want for myself. But I hadn’t realised I’d slipped into it all or something. And so it’s about starting those conversations. Sometimes self-management isn’t actually self-management. It involves people around you. And so thinking about it is reflecting with those people closest to you. Actually is this the way I want to be? And starting those conversations and diaries are important in that and then working out. And maybe we’ll talk about it setting things like goals and where do you want to be with this and what things do you want to go to? And then what resources are you going to look for? It is just a bit of a journey, isn’t it, Sophie? I mean, it’s a skill and you need to work on it.
Sophie Mitchell [00:24:26] Yeah. And it’s just making me think about the amount of people who I have met, who we know the reality is that unfortunately, not everyone has a really good supportive network around them.
Dr Katy Munro [00:24:38] Yeah.
Sophie Mitchell [00:24:38] And we know that in different chronic pain conditions that relationships can become complex and difficult because of living with a condition that we can have lot of people in our lives who don’t understand what it means to live with a headache condition. We might feel that we can’t be the parent, partner, sibling, friend that we really want to be. We have to acknowledge that. And I guess one of the barriers that can often come up for thinking about self-management is well I don’t have anyone around me to kind of support and really take on these ideas to. I think it’s whilst was that that’s really challenging to think about, is it still very useful to think about, say, for instance, what I talk about a lot with families, with various clients who i have worked with is just to take a moment to, I guess, view chronic conditions and chronic pain conditions from both sides to think about what isn’t understood. And often families can feel left wondering what they’re meant to do, not understanding it, because as far as they know, if you have a health issue, you go to the doctor and then that’s all fixed and that’s the end of it. Whereas we know that the people we work with, that’s a little bit more complicated. So we want to think about having a conversation with those around you that’s maybe not when you’re in a lot of pain, not during the heat of an argument, but trying to think a little bit more about, OK, let’s let’s make this like a of digestible way. So rather than just saying I’m in pain and this is just never going to stop, think about how we can put this in a way that people who love us or people who need to be in our lives can take that in without being overwhelmed by that. For instance, what we think about with lots of people is almost having like a traffic light system. So like a red, amber, green. These are some of the self-management strategies I’m trying on a green day when things are pretty good, I can cope with my pain. Or maybe they may, for some people, be pain free days. This is what I’m going to do when things are starting to get a little bit more tricky. And then these are the days when I have that kind of worst pain, when I have a migraine or cluster attacks, for instance. And that can be helpful sometimes for people to get their heads around because then they can feel like, OK, this is what I do in that time. This is what I need to back off. This is when I can help you and talk to you. So sometimes that can be a helpful way to involve other people within self-management.
Dr Katy Munro [00:27:35] I think we’re talking about chronic pain and self-management of headache conditions, which often people think of as migraine as being a headache condition. But of course, we do see also all of us, I’m sure, a number of patients who have migraine where actually the most bothersome symptom is dizziness or is brain fog, or more that they get really sudden nausea and vomiting and then they feel very anxious that they’re going to have that happening and so the anticipatory anxiety about that is really hard, isn’t it? And that, you know, the pervasive nature of migraine starting making people feeling uncomfortable in the day or two, at the prodromal phase and then coming on to the more maybe in some people the aura phase where they may find visual disturbances and then that stops them doing what they’re doing. They can’t be looking at the computer anymore. They can’t be driving. And then the headache phase and then that sort of hangover phase. And it’s that whole- it’s about managing that whole breadth of the migraine attack as well as the actual pain, isn’t it, really? And I think people who are in the network, the family network or the friends or the work support network, the more they understand about migraine then the easier it is for them to really, you know, not be dismissive. We hear this sometimes: ‘they just think it’s a headache and everybody gets them’. And so it is so important to involve people around you. I had a young patient the other day who was struggling with vestibular migraine and the anxiety that that patient was feeling was really high because he was at a boarding school. And so he was really having to self manage when he got his attacks because his mum and dad weren’t there. So talking to school, if you’re a child that gets attacks at school or talking to your work colleagues or talking to your friends and explaining, then they realise that you’re not bailing out on them for that meeting up, that you were going to go out and have some nice social occasion. But if they understand migraine they can- it takes the guilt and shame. I think a lot of people with migraine get guilt and shame about it don’t they? Feel that they can’t tell people? And I think that my keenness to do this episode was to say that self-management doesn’t imply that if you still get migraines, it’s your own fault because you’re not managing them well enough. We want to get rid of that guilt and shame and just empower people a bit more i think.
Sophie Mitchell [00:30:24] I guess that sometimes the temptation is: I need to get rid of guilt and shame and worry and stress, but often when we try and do that in the same way as we think, I need to get rid of the migraine, I need to get rid of pain that actually that can kind of create more secondary tension for us.
Dr Katy Munro [00:30:44] Yeah.
Sophie Mitchell [00:30:46] Thinking, you know, I just really need to be better, whatever better means physically, psychologically. And often how we try and think about this is to just try and take a step back from that a little bit and to acknowledge that actually well, this is tough. So it’s OK to have different feelings that come up for you as part of that. And say, for instance, a metaphor that’s often used is the idea of a bus. And it’s a bit like thinking of your life as a bus and you’re the bus driver and you want to be able to kind of take that direction. Unfortunately, what’s going to need to come on the bus with you is perhaps your conditions, all the different symptoms, whether that’s nausea, whether that’s the dizziness or the pain. There’s going to be maybe a shame on that bus, the worry, the stress, all these different things. And actually if we spend lots of time kind of looking back, if we stop the bus and we keep arguing with all those different passengers, then we’re not going to be able to move forward and do the things that we really want to do. So instead, because we can’t chuck them off, instead, we have to be able to find a way that they can come along on the journey with us because that enables us to then move forward based on the things that really, really matter to us. So perhaps, for instance, if I was someone living with a headache condition and I knew that when I went to see friends, I’m going to have lots of guilt and shame that I carry with me, but it’s finding a way for that to be there so that I can make that a manageable amount in order to still be able to engage with seeing friends as much as that means to me.
Dr Katy Munro [00:32:29] That’s really interesting.
Anne-Marie Logan [00:32:31] Lovely analogy.
Sophie Mitchell [00:32:31] It’s not mine. I can’t take credit.
Anne-Marie Logan [00:32:38] It’s really nice.
Dr Katy Munro [00:32:39] Pulling forward as a whole person with everything that encompasses you.
Anne-Marie Logan [00:32:44] And I think one of the things that being having a sort of working plan for yourself is the strength to say to other people that this is my plan. Well, this is my bus and to be able to talk to others about it, whether it’s people in your family or whether it’s your employers and say, this is my bus, this is what my bus needs. And to be able to explain it, because there’s quite a lot of that invisibility of migraine is really difficult. The fact you can’t see everyone in that bus. And I think that’s so, so difficult. So if you know that in order to have a migraine at work, you need time to go and to take your medicine. You know that cognitively, you won’t be with it for two hours. You know what you need over that migraine attack and you know that you’re going to be feeling sick. You know that you won’t be able to do this particular part of your job. And yet you’re hiding it because you can’t tell your employers or you can’t tell your friends or whatever, the burden of that is huge. And I think part of managing your migraines well is to be able to have the strength to be able to say, and i know this is really hard if not impossible sometimes, is to say to your employer, ‘I have this condition, this is what I need’. And in order to do that you need to know about it. You need to know what your plan is and then to be able to do that lift conversation, you know, that two minutes. This is what I need. And that’s so hard to do. And that’s part of self-management as well, it’s that communication.
Dr Katy Munro [00:34:38] We’re hoping to do an episode of the podcast fairly soon about migraine and work? And I’ve been speaking to the migraine trust because they’ve got a really excellent advocacy toolkit for work to sort of help people to talk to their employers. Because I certainly- I’m aware of a patient of mine who said she’d managed eventually after many, many years of having migraine to get to a place where she was very, very much better. And she said to me, ‘I never told any of my friends or my work colleagues. I just pushed on through. And now they’re all saying, oh, wow, you’re very different. And they didn’t even have a clue’. They didn’t have a clue for years and years with what she was struggling with. So what do you think it is about that conversation that makes it so hard? I mean with employers. I’m aware that people are worried that they might be penalised or that they might have missed promotions or things like that. The stigma is still very real around migraine.
Anne-Marie Logan [00:35:41] I think there’s a huge stigma. I think as is with lots of pain conditions that you can’t see. I think there’s a huge stigma to it. And I think even if you have told your employer, if you haven’t got better, I think it’s looked as a failure. Why haven’t you got better? You’ve taken some medicine. Why didn’t you get better? It must be a failure. So I think even if you do say something and it then doesn’t get better, it doesn’t look good. I think it’s very difficult for people.
Dr Katy Munro [00:36:18] You were saying about goals and setting goals with people. And one of the things that we’re quite aware of is that people sometimes come with the expectation that we as clinicians will be able to cure their migraine. And sort of talking around what they’re hoping to achieve. Finding out what their goals are for a medical consultation is really important. But I’m guessing the same is- setting goals in self-management is also important and links in with the pacing we were talking about, i guess. You need to work out where you want to be and then how you gradually get there, does not make sense?
Anne-Marie Logan [00:36:59] Yeah, I might take issue with just the word medical consultation, actually. I think it is a consultation in which medical and self management, I think self management is part of the whole thing. The consultation contains the whole thing. The goals are for migraine management, of which there is self-management and medicines and emotional management, physical management, all the things that we’ve talked about. And that is within the consultation. So I’m sure Sophie will agree. But it’s about your- where do you want to- it’s living with it. We don’t have a cure. So how will you live better with it? And that’s as much with someone with episodic migraine as it is with daily migraine. We don’t have a wand that stops it coming back. I couldn’t say to someone when they walk in, you’re never going to get a migraine again. But how are you going to live the life you want to live? How are you going to live better with it? Sophie, over to you, your patients are slightly different.
Sophie Mitchell [00:38:23] Yeah, I guess so, because I meet lots of patients who have been living with this for such a long time, that that can feel really tough. The idea that they still need to think about how life could be different with this when this is what they have become used to in lots of ways. And I think it’s important to recognise that when we’re when we’re setting goals, it’s about thinking about making that goal relevant to that person so rather than it being a goal for us as the professionals and what we think would be useful. It has to be really relevant for that person and their life and for it to actually be realistic as well. So rather than saying, well, my goal is to get rid of migraines, to get rid of my symptoms or to run a marathon, when at the moment I’m finding it hard to leave bed then we need to kind of really think about that. And also to make it, you know, really relevant to the things that matter to you the most in life. So psychologist in Health care is thinking more and more about making things based on someone’s values, the things that really matter to them, and we can tap into that by thinking, what is it that’s really tough for me in living with this? What I’m really missing out on and feels like it’s really hard to miss out on? Or equally am i the kind of person who, when I win the lottery, would I want to give it to charity, would I want to give it to my family? And that kind of tells us a little bit about the things that matter to someone so we can we can tap into that when we’re trying to think about how someone can set a goal that’s relevant to them.
Dr Katy Munro [00:40:09] Do you think people have thought about that much before or do you think a sort of period of self exploration that you’re doing with them really and sort of naming those things that they maybe have taken for granted?
Sophie Mitchell [00:40:25] Yeah, I think some of the questions I ask at times probably seem a little bit unusual and strange but that’s so that we can explore what it means to be that person’s kind of live their life. I think that’s where when we’re thinking about self management, that’s looking at the self part.
Dr Katy Munro [00:40:47] Yes. So I guess just thinking about examples around that. So in one person, it might be that they really hate the fact that they miss out on going to their child’s concert at school but another person it might be that they really want to carry on playing tennis or somebody else might want to study for a particular qualification and their finding it’s impacting on that and they’re really interested and passionate to get back to that. So it can really vary widely can’t it?
Sophie Mitchell [00:41:19] Yeah, and it can. And I’m aware that they’re going to be people listening to this thinking. I don’t even know where to start. That feels really difficult. And I think just to encourage that it’s OK to take the most tiny, tiny steps, because actually that’s where you’re going to feel the most consistent and going to carry on going with that. And sometimes there are going to be slip ups. It’s like if we imagine if you were to climb that mountain and have really, really big steps between everything, you’re more likely to fall down. Whereas if you have these tiny little steps that can be as consistent as you go, you’re more likely to be able to achieve your goals.
Dr Katy Munro [00:41:58] Yeah, so breaking it down into sort of mini steps and making mini/intermediate goals, not necessarily going right I’ve got to get up to the top of the mountain, but I’ve just got to leap forward. I certainly walk up hills like that personally. I look down and put one foot in front of the other, but I’m not very fit at the moment, especially after the lockdown. Yeah, I like that. And I think I mean, you know, some people talk about they like to make lists of what they’re going to do in the day. And I’ve certainly had people who say, you know, I’m going to write down three things I’ve already done just so that I can tick them off.
Sophie Mitchell [00:42:35] I’m definitely one of those. I do that, yeah.
Dr Katy Munro [00:42:37] So, you know, if you are making a list of things a day, you don’t put three hundred things on it and then feel like you failed at the end of the day. You put three things that you know you’re going to do anyway. You tick them off and then you add on one or two that you’ve achieved and you think, wow, look what I’ve done.
Sophie Mitchell [00:42:55] And I think it’s really important to recognise there’s lots of thoughts and worries that can come up that stop us being able to do what we really want to do again. So, for instance, lots of thoughts might come up at that point of thinking, well, I’m a failure. There’s no point. It’s not worked before and I guess that this kind of brings us to how we manage different thoughts and feelings that come up as part of living with a condition. And so there’s a couple of ways that we can think about this from a psychological approach that draw from different types of therapy. So one being we will recognise as cognitive behavioural therapy and the other being acceptance and commitment therapy and talking about mindfulness based techniques. So if that’s all right for us to kind of look at there’s so many different areas in this. Because, you know, when when different thoughts come up, for instance, the thought of ‘but I’m a failure’ can often be one that kind of creates blocks to working on goals. From a CBT, a cognitive behavioural therapy point of view, we can look at that thought a little bit more and think, ‘well, is that definitely true? Are there times when actually I have been able to do things? Because look at my to do list I’ve already ticked off three things so I can’t be a total failure. I know my friends and family haven’t told me that before’ that kind of thing. From another approach that we can look at this in just kind of being mindful. Mindfulness is something that gets talked about a lot and really is the ethos of being able to recognise well this is just a thought. The brain is really good at generating all these different thoughts. This is another passenger on my bus and this is just a thought. And so, for instance, adding a sentence before, so, we’ve got the ‘I’m a failure’. If we add in the sentence before, which is ‘I notice that I have a thought that I’m a failure’ and that kind of reduces some of the stress and tension that comes with it. And we can think, OK, that’s just a thought that’s going to carry on going but actually I’m going to focus on this goal, this thing that i really want to be able to do.
Dr Katy Munro [00:45:11] Can I ask you about catastrophizing? So I think that- I come across as a lot. People saying, ‘well, what if? But what if I can’t manage my own headaches? And what if they get worse? And what if I lose my job? And what if I can’t do my exams? And what if?’ So, how do you tackle the what ifs?
Sophie Mitchell [00:45:29] Yeah. Oh, that’s a big question. And again, we can kind of draw from different approaches within this and say, for instance, people find that these kind of rumination worries so the kind of continuous circling. Some people find that an approach called worry time can feel helpful. So that’s about kind of having some set boundaries around the things that you are worrying about. So, for instance, throughout the day, you kind of write down all these different worries that you have and that you’ve then- you kind of park it. So you think, right. And I’ve written it down and I will deal with that later. And it comes to a point towards the end of the day, but not bedtime. No definitely not. The kind of evening time where then you go back through that list and say, well, OK, so that what if worry, is that still a worry for me? Is there a practical solution that I can do with that? So, for instance, what if I can’t cope with not having food during a wedding? OK, can I have some practical problem solving around that and take some snacks with me in my bag, that kind of thing? Or is this a- again a thought that I can kind of challenge? Is this something that I’m just going to have to be able to make space for in order to do what I want to do? And a lot of people find that strategy really helpful. Others, again, kind of come back to this mindfulness based technique, which is more about kind of being able to notice that that’s what the mind is doing and generating. People talk about a technique called leaves on a stream, which is where you almost imagine each little worry just getting placed on a leaf, on a cloud, and it’s rolling by. We don’t have to intervene. We know that it’s there, we know it’s going to do its thing. The mind is there to try and protect us, but ultimately we’re able to choose what we do buy into.
Dr Katy Munro [00:47:33] I love that thought, and the other one I’ve heard of this is tying a helium balloon on to that thought and letting it just float gently away. I think it’s that noticing what your messages are that you’re telling yourself is half the battle, isn’t it? Because if you notice that you’re going, oh, what if what if, then you can go, oh, hang on a minute. I do this. So now I need to work on my strategies for how I don’t let that impact on how i feel. The other one I’m very aware of is people saying, ‘oh, they’ll probably think’. And that sort of thought projecting, you know, ‘if I tell my employer, they’ll probably think this and they’ll probably think that. Or if I tell my friend I can’t come because I’ve got a migraine, they’ll probably think, oh, gosh, she’s doing that-‘. And they make up this whole conversation in their heads, which is all invented and stops them doing the thing that they want to do because they’ve already anticipated other people’s reactions. That’s quite a common one, I think isn’t it?
Sophie Mitchell [00:48:35] Yeah, common kind of makes sense. And I think I can understand that would be difficult. And I think we have to emphasise how much we’re all kind of made to be social beings and worry about judgements from other people so that, you know, often what I hear is ‘it’s really silly because I worry about this’ and then the sense of silliness and worry about our thoughts that can kind of really create the most difficulty and stress for us.
Dr Katy Munro [00:49:08] There was a lovely book I read a while ago called Self Compassion by Kristin Neff. And it was about basically being kind to ourselves, which sometimes were really hard on ourselves aren’t we? And we tend to be much kinder to the people around us than to ourselves. We expect a lot of ourselves.
Sophie Mitchell [00:49:25] But people can find it quite hard to capture an image of being compassionate to themselves. And often the techniques that can be helpful is just remembering, ‘well, what would I say to a loved one? Because I wouldn’t want them to have this thought either.’ Or if you can imagine someone who’s really compassionate to you and what they would say or even being compassionate to a different version of yourself, kind of thinking of yourself ten years ago as a child, what would the child version of me need and kind of offer that care and support in that way.
Dr Katy Munro [00:50:02] Yeah. Yeah. So, so much- so many ways that we can explore this topic. I think it’s really fascinating. So can I just ask about how were you approaching this? Are you mostly doing this on one to one or is it better in groups. I think Anne-Marie, you did a survey about what sort of self-management support people wanted.
Anne-Marie Logan [00:50:28] Yes. I did a social media survey last year through the National Migraine Centre who sent it out in the Migraine Trust. Asking people with migraine what they wanted. And overwhelmingly people with migraine did want support for self-management and i asked them how they wanted that support and they wanted it in groups with so one to one support. The next choice was some support over the Internet with less in paper form. They wanted support for things like decision making, for information, which is commonly what we hear. And what was really impressive was they wanted support for improving- increasing their role in self-management, which is something we hear in clinics all the time, is people are really active in this. And so I think there’s a real need for this. And that’s what I was trying to find out. And I think, Sophie knows this, that we both run groups and you can really see this working- it’s that people get a lot from the other people in the group. You can see them learning from experiences and not just from the person who is facilitating the group, but also from the other people with migraine in the group. And it’s really inspiring to watch. I’ve learnt an awful lot from watching and seeing how people interact. And it’s really impressive.
Dr Katy Munro [00:52:18] It’s really good when people realise they’re not the only one is not. I’ve had a number of patients say to me, you know, have you seen anybody else like me? Or I had a little girl who came in one time and she said ‘the best thing that’s helped me is knowing that I’m not the only child who’s got this, I thought I was the only one’, because she didn’t know anybody else and she’d found a support network and heard from us as well. We see a number of children like this. And just that sense that you’re not alone with this because it can feel very isolated can’t it.
Anne-Marie Logan [00:52:54] And what I learnt was that also having a sort of mixed level of disability as well, having people with different abilities or different migraine intensities really, really made a difference so that the people who are worse, could see that there was some sort of future and the people who took it the other way around as well. And so everyone gained and that was really- it was good to see.
Dr Katy Munro [00:53:23] Yeah. I’m aware of all three of us work in specialist headache clinics and I certainly as a GP doing a headache clinic at the National Migraine Centre, have a much longer consultation time and we try very much to do the three legs of the stool that you’ve been describing, Anne-Marie. But I’m conscious that some of the people who listen to this podcast, the GPs, who may have 10 minutes and feel very pressurised, how do you feel that they can enable our patients to feel that they’re walking with them, that helping them to learn self-management? What do we need to be trying to get into these very time pressured consultations?
Anne-Marie Logan [00:54:06] I think it’s probably about that question, where do you want to be? Starting from there because I think that patients don’t always want medicines. If you think of the three legs of the stool, it’s not always the medicines leg it’s often about the physical movements. It’s often about their emotional side. And I work in a hospital and sometimes it’s quite difficult to persuade them that’s in order to move better or that they need a few medicines or to say that it’s a balance of all. And so I think I would start with what would you like? What’s your goal? And work from there. How about you, Sophie?
Sophie Mitchell [00:55:09] Yeah, I think I’d second that in thinking about values, like we said before, is often one straightforward way to bring in a different lens into a conversation. So that can be really helpful. I think there’s been a lot of training with GPs that they can get to kind of think about that. And funnily enough, this is a conversation I have with my sister a lot who’s a GP and she often asks me, what can I do? I’m not really sure? When actually, this is a ten minute session. It’s just kind of really, really tough. And I guess that what I’ve seen with a lot of medical teams is that they’re really happy to talk about lifestyle and kind of talk about all these things so definitely continue to encourage that. And maybe just to kind of think a little bit more about, well, maybe what are the factors that might be blocking that and what’s making this a bit tougher. Say, for instance, that I might rely on my medical colleagues or I might rely on GPs to recognise when someone has psychological barriers perhaps, or their mental health issues that are making it more difficult for them to live with a headache condition or to be able to set goals, for instance. So I think that’s one way in which teams can be useful is just to kind of keep an eye out on those factors.
Dr Katy Munro [00:56:35] I think one of the advantages of general practise is that sort of duration of time that you can go forwards with a patient, you know, hopefully slightly different these days than it used to be, obviously, with pressures on GPs and covid and all of that. But I mean, ideally, you can spend a 10 minute consultation talking about the things we’ve discussed, but then say, next time I see you, we’ll take this aspect of it and look at that a little bit more. And I think you don’t have to do it all in one consultation, which is really, really good. And the other, of course, is signposting. So I’m hoping that GPs are signposting the patients to our podcast and there are some good books out there. And so are there services like yours in most of the clinics around the country, or are we very privileged to have the two of you doing what you do?
Anne-Marie Logan [00:57:34] Of course, very privileged.
Dr Katy Munro [00:57:39] So do you think there needs- I’m sure you’re going to say yes to this? There needs to be more of you. There needs to be more investment in this kind of support for patients in headache specialist clinics and in community?
Sophie Mitchell [00:57:53] Yeah, I guess, Anne-Marie i don’t know if you want to say from a physio perspective and I can say for psychology.
Anne-Marie Logan [00:58:00] Yes, I think that the approach needs to be integrated into what’s normal for us and what’s normal within the NHS. So we don’t have money for new interventions and new things. But I think we need to just do what we do differently. So I think, as you said, we need to integrate it better into the way we do our normal consultations and we work in the same way as everyone else does within headache’s services. And we’re looking at using measures differently to be able to identify how we can make our care a bit more patient centred. And that’s very much with self-management at the heart of it, so at the moment, we’re looking at our pathway so that we can put self-management right at the centre of it, so we’re not introducing a completely new team or anything. We’re just remodelling and so that we can put self-management and groups right at the heart of that. So I think probably that’s the way to go. I think we’re probably slightly unusual, but it would be nice if there was more of that. But as for funding for massive great sort of innovations, I don’t think we’re going to get that. I think remodelling the way we do things,.
Dr Katy Munro [00:59:31] Working with what we’ve already got making it more self-management is the most-
Anne-Marie Logan [00:59:37] I think that’s roughly how we will go where we are.
Sophie Mitchell [00:59:42] Yeah, I think from a psychology perspective, in an ideal world, I’d say you need psychologists in every medical team.
Dr Katy Munro [00:59:51] I think you do.
Sophie Mitchell [00:59:51] Very, very biased, very biased statement. But obviously the reality is that that’s not always possible. And so, for instance, psychologists work in medical teams, for instance, putting the nurses and the specialists in what conversations they have with their patients to kind of promote psychologically informed care. On the outside, if we know someone is experiencing a mental health issue as a result of the headache condition, then we need to make sure they have some access to care. So, for instance, in the UK, we have the improving access to psychological therapies and a scheme that has been going for some years to improve access, kind of, predominantly to cognitive behavioural therapies. And that means that people can access this kind of treatment and kind of develop some coping strategies. And within that scheme, there is a part of that pathway specifically designed for helping people with long term health conditions. And so we hope then that those needs would be met. I think what happens, though, is that unfortunately, particularly within a different psychological therapies, that when we think about chronic pain and within a kind of a public knowledge level, when we think about chronic pain, we often talk about back pain and it can be really, really tricky. And I think it can leave everyone wondering a little bit what to do about people who experience migraines and different headache conditions. And I think it is important for us to piggyback on the public knowledge that’s developing around the difficulties around back pain and kind of think a little bit more generally, because actually a lot of these principles that we’ve talked about are kind of fairly similar.
Dr Katy Munro [01:01:40] Yeah.
Sophie Mitchell [01:01:41] So it’s important for us to recognise that certain people can continue to get access to psychological care in some way.
Dr Katy Munro [01:01:50] I’m sure you’re right. And certainly I know that GPs have access to the IAPT scheme that you mentioned and you don’t have to be referred to a specialist headache centre to get psychological support. You can get that kind of thing through your GP. It’s just a question of going having the conversation about the breadth of the impact that your condition is having on you, isn’t it really.
Sophie Mitchell [01:02:14] Yeah, and actually you can for most of the services, you can refer to yourself as well. And then if it feels too difficult to have a conversation with your GP, there would normally be ways to access informed support.
Dr Katy Munro [01:02:29] There are some good online resources as well and just certainly aware of Pete Moore who is a chronic pain expert and he has ‘the pain toolkit’, which has been going now for quite a number of years and i know it’s all over Europe. And so I’m going to give Pete Moore a plug because I think he does great work in promoting self-management and having met him, he’s an extremely good advocate for this kind of thing. Are there any other resources you would want to point patients to? Or actually, if there are, we can probably put them on the blurb for the podcast. So if you let me know if you can think of any off the top of your head.
Sophie Mitchell [01:03:15] Yeah, I guess, so you know predominantly that it would be useful to think about resources that are helpful to access both cognitive behavioural therapy techniques, but equally acceptance and commitment therapy and mindfulness techniques as well. And there are a range of different apps and resources and all these different kinds of things. And I think it’s also important to recognise as well about resources that are helpful for people around the network. So we’ve talked about does this apply, regardless of whatever age you are and there might be parents who are listening to this, not sure what to do about how to support their child with different self-management strategies. So there are resources for parents as well.
Dr Katy Munro [01:04:01] Yes because you used to work at Great Ormond Street.
Sophie Mitchell [01:04:04] I did. I had a headache team.
Dr Katy Munro [01:04:10] Very good headache team there. And so anything else? I wanted to ask you about your research Anne-Marie, tell us a bit more about your research.
Anne-Marie Logan [01:04:24] My budding research. I’m looking at how- I hope to be looking at how self-management can be embedded into a group clinic type of care. So if you went to go and see a GP, for instance, how we could look at putting group self-management into that consultation. So exactly what we were talking about because of the thing that is very difficult to get access to it. Exactly what we’ve been saying. And is there a way that we can combine some headache specialist knowledge and self care within a group? But in a more accessible form. And there’s some models of group clinics that have been tried in America and they’re being tried in the UK for diabetes and hypertension and looking at whether that’s a feasible thing to do for migraine. And so that’s what I’ll be looking at. But certainly what patients have been telling me is it’s an interesting idea. So I’m going to be looking at co-designing it with a group of patients.
Dr Katy Munro [01:05:46] So I didn’t want to make this particularly covid related. But of course, we live in a time of covid. So what do you think about the fact that groups are much trickier to run now? Do you think you can do all of these kind of things on a Zoom call?
Anne-Marie Logan [01:06:02] Well, yeah, I just I checked that with my patient group recently, and they were overwhelmingly keen on virtual groups rather than face to face ones. And, bless them, the reasons were hospital parking charges and lights in hospital because they’re too bright and they can control the environment at home.
Dr Katy Munro [01:06:30] That’s so interesting.
Anne-Marie Logan [01:06:32] It was fascinating.
Dr Katy Munro [01:06:34] We’ve certainly found, having gone literally over one weekend from doing face to face clinic appointments to doing everything online, some videos, some telephone, and particularly for migraine patients, it’s much better in a lot of ways, isn’t it?
Anne-Marie Logan [01:06:52] Well, there was a several slight hesitation in that, you know, people are having a lot of virtual meetings and things and there are definitely some people who it will exclude and we’re going to have to work this out. But I was really surprised how keen and how positive they were. I think my concern as the facilitator is my technical skills. Whether I’m going to be able to run this.
Dr Katy Munro [01:07:19] We’re all on a steep learning curve.
Anne-Marie Logan [01:07:22] Because overwhelmingly, yes, let’s try it. And so we’re going to roll it out and we’re doing some dummy runs already in the next couple of weeks to try it out. Yeah.
Dr Katy Munro [01:07:34] I think, you know, as one of a range of options, it’s definitely worth keeping, isn’t it? And I think if we said, oh, we’re never going to do that way again, we’re only going to do this. And I think you do miss out. And certainly patients who’ve been wanting Botox or injections, obviously they are the ones who’ve been hit very hard by not being able to access face to face clinics. But there’s some pros, there’s definitely some pros.
Anne-Marie Logan [01:08:02] Yeah. it was nice to hear.
Dr Katy Munro [01:08:06] Yeah, yeah. I think it’s a really important topic. I want to thank you both very much for joining in on this. And it’s really great to know that the expertise is out there. And hopefully people will, you know, really enjoy this episode. Thank you for listening to this episode of the Heads Up podcast from the National Migraine Centre. We hope you’ve enjoyed it. As you know, we’re a charity and we do rely on donations to keep functioning, especially in this difficult time of covid-19. If you could possibly give us any size of donation on our Virgin money giving site, that would be lovely. The details are in the blurb and spread the word about the podcast. We’ll be doing another episode in a couple of weeks.
[01:08:55] You’ve been listening to the Heads Up podcast. If you want more information or have any comments. Email us on info@NationalMigraineCentre.org.uk. Till next time.
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