A National Migraine Centre Heads Up Podcast transcript
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[00:00:00] This episode was recorded before current COVID 19 restrictions. Did you know that the Global Burden of Disease Study in 2018 ranked headache disorders as the second highest cause of years lived with disability. Migraine is a worldwide problem. Welcome to the Heads Up podcast brought to you by the National Migraine Centre, the only UK charity treating migraine and headache.
Dr Katy Munro [00:00:32] Hello, I’m Dr. Katy Munro and I’m not quite with Dr. Jessica Briscoe.
Dr Jessica Briscoe [00:00:39] Hi.
Dr Katy Munro [00:00:39] Because we’re far away still due to the COVID 19 restrictions. So welcome to this podcast, which sort of feels quite topical because it’s about migraine affecting people all around the world. And I feel as if with this recent pandemic, thinking about the health of people all around the world is something that we’re doing on a daily basis.
Dr Jessica Briscoe [00:01:04] Yes, absolutely. It’s really important to know that the majority of this episode was recorded before the current restrictions, as will be evident as there are a group of more than two of us in a room at one time. So it’s really important to bear in mind that some of the comments that were made were made before the current crisis.
Dr Katy Munro [00:01:24] And of course, access to some of the therapies that we talk about may be more difficult during this time of lockdown. So we’re really basing our information on how things will be again, hopefully once we’re all let out from our separate houses. Okay. So we’re going to go straight over now to a group conversation that we had with some doctors from England, Scotland, Northern Ireland, somebody from New Zealand as well. So we’ll hand you over to those and then we’ll be popping back up at the end of the episode just to tell you some more details.
Dr Jessica Briscoe [00:02:04] Hello. I’m Dr. Jessica Briscoe, and I’m here with Dr. Katy Munro.
Dr Katy Munro [00:02:08] Hello.
Dr Jessica Briscoe [00:02:09] And we are talking about migraine care around the world this week, well, this fortnight. So the reason that we’ve decided to do this episode is because we see a lot of people from around the UK as part of our charity and we’ve really noticed that there can be quite a big difference between migraine services that are available in the UK and also internationally. And I think the other thing that also has highlighted this is the current CGRP antagonist and the fact that they’re available in some parts of the UK and not in others. So we’ve brought some special guests in today and we’re being joined by some more later on in the episode. And I think we’ll start off by everybody introducing themselves. So maybe we’ll start with Richard?
Dr. Richard Wood [00:02:56] Yes, hello, I’m Richard Wood. I am a GP with a special interest in headache and running a headache clinic in Oxfordshire. And I’ve helped develop the headache pathway in Oxfordshire.
Dr Katy Munro [00:03:05] Excellent. And to my left is David Watson. Where are you based, David?
Dr David Watson [00:03:11] Thank you. I’m based in Scotland, I’m in Aberdeen. I’m a GP and a GP with an interest in headache. I’ve been working in a neurology clinic, seeing patients probably for 15 years now. I’ve been involved in national guidelines in Scotland and we’re very excited to have the monoclonals available to our patients. And I’ll tell you a bit more about that later.
Dr Katy Munro [00:03:32] Yeah, we want to hear more about that don’t we. And finally, last but not least.
Dr David Kernick [00:03:38] Hello. I’m David Kernick. I’m a GP in Exeter. I run what’s called an intermediate care headache clinic which we’ll probably pick up later for NHS Devon.
Dr Katy Munro [00:03:46] Right. So one of the reasons, as Jess said, is that we see a lot of patients from around the country, but we also see international patients so further guests will hopefully give us a bit more of an idea of what’s happening in the US. And I know it’s been quite a hot topic over there recently. So we of course are based in London, in Holland Park in our National Migraine Clinic, which has been running for 40 years as a charity.
Dr Jessica Briscoe [00:04:11] Yes, it’s our 40th birthday this year.
Dr Katy Munro [00:04:12] So we’re going to be singing Happy Birthday on one of the later episodes. And we see people who refer themselves here and we’re not NHS at all. We’re just a charity who ask for voluntary donations and get some grants, hopefully, and sometimes donations to the podcast, which is always wonderful, but most of the people sitting around this table work in the NHS. So shall we come back to you, Richard, and what would you say is the good thing about the Oxford services and what are the challenges or the benefits?
Dr. Richard Wood [00:04:49] Yeah, so the challenge was actually levied to me about four years ago when I was working with the commissioners as I do, I advised the purse string holders for the NHS, if you like, how to manage services in neurology. And it was clear that one in three referrals to neurology services, neurology outpatients, were for headache and that’s a huge amount. And what was distressing for patients and also actually in fairness for the neurologists, was that a lot of those headaches were migraine. And really that could be managed in a primary care setting by a GP who’s closer to home and knows the patient better. So a challenge was to make a pathway where we could try and take those referals of migraines which are going into neurology services and bring them out closer to home.
Dr Jessica Briscoe [00:05:38] I think that’s a good idea because actually in theory that’s a very good idea because your GP is your, traditionally, family doctor. I mean, I think we’re probably all biased because we are all GPs. But I do think that a lot of migraine I mean, there’s actually an argument that a lot of migraine should be being managed by the patient as the driver.
Dr. Richard Wood [00:05:56] Absolutely.
Dr Jessica Briscoe [00:05:57] But actually, if you’re struggling, the next step should be to see your family doctor and get good quality, basic information. But that can be very difficult in 10 minutes.
Dr. Richard Wood [00:06:07] It can be very difficult. So we developed a system where all the headaches coming through to the neuro department are triaged by an expert, a headache consultant, a neurology consultant who then decides actually what’s the best place this patient could be supported? And 10% of the time it’s actually a letter back to the GP saying this is migraine, here are our local guidelines. Follow this. Always copy in the patient’s in that letter so they know what’s going on.
Dr Katy Munro [00:06:34] Yes, we do that here.
Dr. Richard Wood [00:06:36] I think it’s very good practise, but for 75% of the referrals is actually to be seen by a GP who has a special interest in headache. And we planted in various areas in the community to actually support those patients and we have a half an hour session with them. We give them a written care plan and my practise is to give a very detailed care plan with a ton of options, which then the patient takes back to the GP and goes we’re going to do this together and the patient needs a consultation. That’s the emphasis I like to give.
Dr Katy Munro [00:07:04] Yeah. I think we’re really into self management and I know David Kernick is very interested in getting in there to sort of more in the community. Is that right, David? You like to talk at schools?
Dr David Kernick [00:07:17] Yes.
Dr Katy Munro [00:07:18] and workplaces and things?
Dr David Kernick [00:07:19] I think there’s a lot of opportunity everywhere. I mean, there’s a lot to do in primary care, which is the first point of call. But I’m particularly interested in two settings. First of all is the school setting where migraine in particular is basically virgin territory. We’ve quite a lot of published work in Exeter showing how massive the unmet need is in children totally unrecognised and less than 10% of children will go and see the GP about their headache. And I think the occupational setting offers huge opportunities too because it’s a win win for everyone. You know, the employer wins, the employee wins. And none of this is rocket science. You know, sorting migraine out is not rocket science. You just need to identify the problem. Simple management and you can make significant impact on the quality of people’s lives. Those two settings are quite big areas.
Dr Katy Munro [00:08:00] I agree. We see quite a lot of children here and I think if you can get in with good education early, but the thing it takes is time, isn’t it, you need to have some time with the patient. Have you done any group things? Have you been doing sort of talking to schools- in classes I mean?
Dr David Kernick [00:08:19] We’ve done projects in schools and occupational settings, talking to groups. I’ve got a particular model I go in with, but I think time is the essence. It’s very difficult to do headache in 10 minutes, in a general practise, especially if you’re not confident.
Dr Katy Munro [00:08:29] Yeah, yeah.
Dr David Kernick [00:08:30] I have the luxury of 45 minutes and a lot of these people come with lots of different problems, what we call multimorbidity. It’s not just headache, they’ve got all sorts of issues. And you need 45 minutes to unpack what’s going on. And I think the really other important thing is very few people, I’m afraid, headache is still largely stigmatised. And most people say ‘no one’s ever sat down and listened to me and taken me seriously before’. And that’s hugely therapeutic, to witness the problems is very therapeutic.
Dr Katy Munro [00:08:54] I think it’s also it’s sometimes it’s stigmatised, but sometimes people just put up with it because they, quote, say, ‘oh, it’s just the normal headache that everybody gets’. And we kind of fighting against recognition from the sufferers themselves, aren’t we, from people with migraine. And do you think that’s why children are not recognised because adults just don’t think it counts.
Dr David Kernick [00:09:18] I think that’s a really good point. Basically they reflect the health seeking behaviour of the parents who haven’t been to see the GP. Possibly in the past they’ve been to see the GP, they haven’t had a good response. So they think what’s the point? It’s not life threatening. They know it’s going to get better. You always want to go and see a GP when you’ve got a headache, but when it’s gone you think, oh, it’s, you know, back to normal again. So for many reasons and I think particularly in the occupational setting, there is a degree of stigmatisation. People don’t want their bosses to know they have migraine. They might be stigmatised for their promotion prospects. So it’s a complex- it’s a complex area, but things are definitely improving.
Dr Katy Munro [00:09:51] I had a patient last week who has been transformed by one of the CGRP drugs after 35 years of chronic migraine. And she said to me, my whole life has changed because I used to even hide the fact that I had migraine from my very best friends. They didn’t realise because she felt so ashamed, which is such a sad thing. And now she’s headache free and she can tell them all, oh, the reason I was antisocial and grumpy was because I have migraine.
Dr Jessica Briscoe [00:10:17] It’s interesting that you say that I saw a lovely person recently who’s in their eighties. She told me that the stigma is still there. But when she was in the 60s, she was told when was she going to decide to be a proper mother because she’d had to ask a neighbour to pick her children up from school. And you hear stories like that and you realise and I said yes, it’s better than it was, but that stigma is still there. You see people sort of saying, well, you know, people present to work because we talk about presenteeism a lot with migraine. People present to work and they say, well, you look okay, you could just go home and people think if I went home every time I had a migraine or you know, I can’t tell people have a migraine because people think I’m just making up or it’s just a headache.
Dr David Kernick [00:11:02] And I think one of the problems is we like things to be measured. If we can’t measure something, we can measure our kidney function or blood pressure. Here’s a number. I’ve got a problem. But if you can’t- a bit like mental health, if you can’t measure it, people get a little bit suspicious about it. So we like things we can see, we like things we can put a number on. And you can’t do that with migraine.
Dr Katy Munro [00:11:18] Yeah.
Dr Jessica Briscoe [00:11:20] I think you’ve mentioned- I think it’s a good time to bring our other David in. Because we were talking a little bit about CGRP, I don’t want to make Scotland all about CGRP, but maybe you could tell us a little bit about your experience in Scotland.
Dr David Watson [00:11:35] Yeah, so I was approached in 2005 to set up a headache clinic by the neurology department who I think recognised that they saw a lot of people with headache and they were very good at saying this is not caused by anything significant or serious, but they weren’t really managing headache patients as such and they knew I had that interest and that was the starting point. And the luxury for me in the first couple of years was I had a session to see patients and a session to develop the service. So over that time and probably for the next few years, I’ve gone out and spoken to about two or three hundred GP’s in the area. And having the time to go and spread the headache message. That’s how I got involved in doing guidelines for Scotland. You’ve got the original SIGN headache guideline and I wrote to SIGN and said that I thought it was absolute ridiculous that there were guidelines for diabetes, hypertension, but nothing for headache. They said what a good idea, would you like to chair it? I then had three years of a lot of reading about migraine, which is really good for my educational point of view. But I was very lucky at that point because some of you might know my consultant colleagues who had worked with Callum Duncan. Callum was a senior registrar and I said it would be really good on your CV if you could be secretary of the SIGN guidelines, hint to do some of the work with me and that’s how the original guidelines started.
Dr Katy Munro [00:13:03] So what does SIGN stand for?
Dr David Watson [00:13:05] It’s the Scottish Intercollegiate Guideline Network. So it’s a sense all the colleges, whether you’re a surgical, medical, GP, have this collective group for guidelines.
Dr Katy Munro [00:13:15] So they get together and they design guidelines for GP’s and any consultants or health care professionals working in those fields.
Dr David Watson [00:13:22] That’s right. And where things are going now, some of the new guidelines is they now do patient guidelines as well. In fact I brought down my patient leaflet we have that you might want to put up on the website. I’ll leave that with you because again back full circle to what we’ve all said before, really it’s about patient empowerment as well. So if we’ve got information out there that people can understand, it’s going to help manage the conditions. And it’s useful for me to have a leaflet and point to the website about that. So we developed that service and now we are lucky to really be able to manage in Grampian. We also look after Orkney and Shetland. Really most of the needs of our headache patients with you know, blocks and GON blocks and Botox and all the other things that really are part of the modern management of migraine.
Dr Katy Munro [00:14:09] So do you think when there’s a good service set up and this is a question for all of you really do you think if you’ve got a local good headache service that the GP’s and other health care professionals locally start to be better at diagnosing it and signposting people towards it?
Dr. Richard Wood [00:14:26] Yes, in my experience then the quality of referrals we have got through since we’ve been running for two years now has significantly improved, which is really reassuring. Actually from my perspective, the ideal would be that the GP’s are so good at headache, they don’t need me and I don’t need to exist. That’s what we’re working towards. And actually I think the biggest problem is, touching on what both Davids were saying, the biggest problem I’m finding is actually what we call a diagnostic one. It’s GP’s recognising or any doctor recognising actually this is migraine. Because once you can recognise it actually there’s a whole different avenues of ways you can support self-management, GP led management or specialist management, but it’s the diagnosis which is a rate limiting step.
Dr Katy Munro [00:15:10] People hesitate to label.
Dr Jessica Briscoe [00:15:13] I find I’m often surprised how many people have been through a number of consultants and not been told their diagnosis. And, you know, they’ll be, you know, six, seven years into having migraine and never been told what their type of migraine is, what we know that causes it. And actually, it’s really important to have that label. And you’re right, a lot of GP’s I find having chatted to people are a bit nervous about calling it and I find that with cluster headache as well. They’re very nervous about putting that label on.
Dr David Watson [00:15:50] I saw a lady on Tuesday at the clinic who had headache with her periods, got better in pregnancy, doesn’t like noise and light. I said to her, has no one ever told you you’ve got migraine. Have I got migraine? And I was just saying that we can have all the guidelines in the world, but if we don’t actually have a diagnosis, people then can’t follow the guidelines.
Dr Katy Munro [00:16:12] I met a family planning nurse at a course some time ago now and we were chatting and she said, Oh, I don’t know anybody with migraine. I mean, I get those monthly bad headaches with my period and she completely didn’t recognise herself as being a migraine sufferer. She wasn’t terribly pleased when I told her, but it wasn’t really my role that day to be fair.
Dr David Kernick [00:16:29] What makes things difficult for a lot of GP’s and people suffering. Is this fact, is there anything serious going on? And that’s what’s different for migraine, you just need to flag it up because it’s the first thing that anyone worries about. Is this a serious cause underlying this and the GP is worried about that and that’s what leads to this whole uncertainty in diagnosis. People are a little bit reluctant and say it’s only migraine, you don’t need any investigations.
Dr Jessica Briscoe [00:16:53] I think that does actually lead to the fear actually to diagnosing it because they know a lot of GP’s hate headache. Because they think but what if I miss the very rare serious one? And a lot of the time they do refer for the scan and then most headache doctors try not to scan. And there’s a lot of dissatisfaction because of that. But you’re right.
Dr. Richard Wood [00:17:20] I think that absolutely is. And I think this is partly to do with education at medical school. So when medical students- certainly when I was educated and taught about headache, I had one hour on headache, over four years, it was a compressed course. So essentially six years of work. And that was taught by a specialist, a consultant in neurology. Now they see a lot more serious conditions and if you’ve only got an hour to teach headache you’re going to focus on the things not to miss. So naturally, the focus is on rare stuff, but serious stuff, underlying disorders, which doesn’t do any justice to the fact that a huge majority, a vast majority of headache out in primary care is nothing to do with that at all. It’s migraine or migrainous headache. And so it’s too short a time in teaching by people who don’t necessarily have experience in a primary care setting of headache where migraine is just so common.
Dr Jessica Briscoe [00:18:20] Well, my undergraduate teaching was taught by David actually, I had an afternoon with him. I always like to bring this up. David’s why I do headache medicine.
Dr David Watson [00:18:29] I’m lucky because although I don’t do the big lectures we have day release for medical students in the fifth year and I do whole 4 hours of headache with them. We do about 20 minutes on what might be sort out on the day subarachnoid and most of it’s about migraine and it’s really interesting because one of the students who was with me two weeks ago wants to be a neurosurgeon and I can see her face dropping when I’m talking about primary headache. But by the end of it, she came up to me and said that was really useful.
Dr Katy Munro [00:19:00] Yeah.
Dr. Richard Wood [00:19:03] 4 hours. It’s still 4 hours. I mean, migraine is more common than asthma and diabetes-
Dr Katy Munro [00:19:06] Absolutely. Yeah.
Dr. Richard Wood [00:19:08] How much do we get on that? A lot more than 4 hours in medical school. And I think it’s up to us as specialists in headache and migraine to push the agenda for more teaching.
Dr David Kernick [00:19:20] And not only is it more common, the impact upon quality of life is greater. So it’s number two in the world in terms of disability. So things are changing but slowly. But I just want to go back to this point about upskilling GPs, which I think is a really important one that Richard picked up on, because I think that my primary role, we’ve been knocking around in the Exeter headache clinic for quite a long time, and my primary role I see as skilling. The GPs get a long lesson with lots of educational stuff and lots of stuff about how to use triptans. And we’re always trying to upskill the GPs because migraine is a general practice problem. Only very few people should actually come as far as a specialist like ourselves. So I think the focus and one of my things in my career I’ve been working on, you know, for many years is trying to improve education and the quality of headache management in primary care.
Dr Katy Munro [00:20:03] Yeah, I think we certainly our letters are aimed like that as well. So they might be rather long, but we send them to both the patient and the GP so that everybody knows what the plan is and why it is as well.
Dr David Kernick [00:20:14] Because here’s interesting question about your letters, do you write to the patient, copy to the GP or you write to the GP copy in the patient? Which do you think is the correct one?
Dr Katy Munro [00:20:21] We write to the GP assuming that the patient is reading it.
Dr Jessica Briscoe [00:20:26] But our colleague, we did have a colleague who did write to the patient.
Dr Katy Munro [00:20:30] Did it the other way round.
Dr Jessica Briscoe [00:20:30] And we’ve debated this endlessly.
Dr Katy Munro [00:20:33] My feeling is that sometimes GPs, especially from us at the National Migraine Centre, don’t quite know who we are. And we’re saying follow these guidelines, do this. And if we’re writing to the patient, then they sometimes maybe don’t take it quite in the right way as if we say, dear doctor, please, would you do this? They don’t necessarily get the gravity of our intention.
Dr. Richard Wood [00:21:00] My intention is always actually for the patient to educate their GP if their GP is needed of education. So I spend a vast I mean, I run terribly late, half an hour is not enough. But a vast amount of time educating the patient about all the options. When I say take this to your GP and you lead the consultation and that’s no disrespect to my GP colleagues because we’ve got an awful lot to know about and there’s an awful lot I don’t know about in other fields, but actually a patient leading the way in that consultation saying this is what I want to do next, that’s educational and that’s, you know, the special relationship between a GP and their patient where both can learn.
Dr David Watson [00:21:36] Richard, that’s really important because the frustration you sometimes get as you have this very detailed letter with a very good plan and the patient comes back and you say, so how are you getting on. And they’re still just on the 20 milligrams of propanolol. So you have to say to the patient you must go and make an appointment with your doctor. So I’ll get this letter to you in the next week, make an appointment in two weeks, and you have to then make sure you do the follow up. Because I had a lady the another day, I said well, without disrespect, your GP is so busy with other things that they’re going to start the first prescription, but they’re not going to treat it unless you go out in front and actually speak to them.
Dr Jessica Briscoe [00:22:12] And they may not even start the first prescription until you come in. I mean, having been in a busy GP job, you get countless letters coming in that say start this start that and you think, well- I do the same as you. I tell the person to go in and get it started.
Dr Katy Munro [00:22:26] You do kind of want to know that the patient agrees that that’s what they want? They don’t just want to be issuing medication willy nilly without some sort of conversation.
Dr David Kernick [00:22:35] I think a patient led consultation is very important. I hate to mention the migraine trust now we’re at the National Migraine Centre.
Dr Jessica Briscoe [00:22:40] It’s alright.
Dr David Kernick [00:22:40] Richard has published a nice little top tips for migraine and I published a podcast on how to manage your GP. How to manage a ten minute consultation for patients. I think it’s quite useful to be able to know what would facilitate the GP in 10 minutes because I think the GP would be very keen for any help they can get.
Dr Katy Munro [00:23:00] We certainly recommend patients to look on the migraine trust or the OUCH websites if they have cluster headache. And also I have said to patients, why don’t you just nudge your GP to have a listen to our podcast because we’ve had a number of GPs saying to us that they found it very helpful and maybe done some of the continuing medical education in the car in between visits or suchlike.
Dr David Watson [00:23:22] I have to say that’s where your Twitter accounts are really helpful because I sent a couple of links to one or two of my GP colleagues and one of them who was duty doctor on a relatively quiet day text me said absolutely brilliant, why have you not sent this before.
Dr Katy Munro [00:23:35] Spread the love.
Dr David Kernick [00:23:37] I think the other point I’d like to make is there’s quite a lot that people can do for themselves. On the Exeter Headache Clinic website we’ve got a- which I use in the occupational health settings as one of the parts of my project, it’s a patient booklet. So first of all, have you got migraine? That’s very simple. Very simple test called the ID migraine. You may have mentioned in previous podcasts. So do you have recurrent headache, do you feel sick when you have a bad headache or does the light or sounds bother you. So two fo those out of three, you’ve got migraine, but there’s quite a lot you can do just for yourself. You can buy triptans over the counter, you get sumatriptan over the counter, you can buy anti sickness medication, which is really important. Buccastem over-the-counter and there are all sorts of preventers you can by perhaps not working quite as well. Sorry, not working quite as well as the expensive drugs, but things like magnesium, vitamin B-6, coenzyme Q10, lifestyle stuff. So there’s a lot that person with migraine can do before they actually get as far as their GP.
Dr Katy Munro [00:24:27] Just even talking about regularity of eating and having good sleep habits and sleep hygiene, I think. Some people just simply need to look at the meals they’re skipping and put in a bit more regular dietary habits don’t they. It makes a huge difference sometimes.
Dr David Kernick [00:24:42] I think people- we’re getting off territory here to how to manage migraine. I know what this is not about. People spend years of their life looking for elusive triggers. You know, if the triggers are obvious I say don’t waste your time. But what people don’t realise is migraineurs don’t respond to change very well, internal or external, so you know keep things routine. And it’s difficult to do that in 2020, but keep things as constant as you can.
Dr David Watson [00:25:04] I have a standard letter that I give to patients who do night shift and shift work to try and get them onto day shift because sometimes without getting them on to day shifts you’re not to get things under control.
Dr Jessica Briscoe [00:25:14] That’s very important. I see a fair number of junior doctors actually.
Dr David Watson [00:25:17] And nurses.
Dr Jessica Briscoe [00:25:19] Yes, who struggle. Medical professionals are not the only people who do night shifts. I’ve seen security people, too. And it’s very, very difficult to improve your migraine. But you’re right, we now moving on to management so we should probably stop.
Dr Katy Munro [00:25:32] So I was going to just talk about- because David mentioned you can go and buy stuff over the counter and thinking about education, it’s not just about educating patients and GP’s, it’s also about talking to pharmacists. I’ve certainly done some talks to pharmacists and you know, there’s quite a wide range of people that come in contact with migraine sufferers. I have a friend who’s an osteopath and quite often picks up that people are getting quite bad migraine and sort of sends them on down here. So are there any ways in your particular areas when you engage with other health care professionals.
Dr David Watson [00:26:08] I’ve spoken to the optometrists and their national conference because they were a bit edgy after the missing of the child that had the papilloedema. And so suddenly headache became topical to them. But that was a really good in for me to speak to them. Really just in that most of what you can see because obviously what most GPs do is say ‘go and see your optician’, which is helpful for me to know their fields are fine and the fundoscopies okay.
Dr Jessica Briscoe [00:26:38] So looking at the back of the eye, for some of the worrying signs we look for. That’s often why we say to see an optician, not because we think eye strain is the cause.
Dr David Kernick [00:26:48] I think most people go to the optician first anyway because they all think, do I need glasses? That’s one of the first things they think of. So i think opticians and pharmacists are really key players, physios too. Osteopaths. Chiropractors. I don’t know about my two colleagues, but virtually everyone I see in the health clinic has spent a fortune on chiropractors and osteopathy because they’ve got neck and shoulder pain. In my book, that is all migraine. I think what people don’t realise is where the nerves of the back of the neck and the shoulder come into the brain is the same area as the migraine called the cervicotrigeminal complex. And in my book, all the shoulder neck stuff in migraineurs is actually low grade migraine. So I think lots of education for physios and I know chiropractors and osteopaths probably wouldn’t take that on board quite so well, but physios are really quite interested in that.
Dr. Richard Wood [00:27:32] I completely agree with that. I mean, migraine it goes to the back of the head, it can go to the neck, goes down the shoulders. One of the key people, as you’ve already mentioned, is a pharmacist in this. And of course, we ought to talk about medication overuse headache.
Dr Katy Munro [00:27:46] Yes.
Dr. Richard Wood [00:27:46] And education around that. Because if a patient is taking a pain reliever on more than 10 or 15 days a month for more than 3 months, they can get themselves into real trouble. The migraine then just locks into the on position. And one of the things which is happening in England at the moment certainly is pharmacists are coming- community pharmacies are coming into practices to support with prescribing. This is a new drive for all primary care networks with pharmacists coming in. And this is a very important opportunity for us to work together with pharmacy colleagues in spreading that message about warning patients, are you taking this for your headache? Do you know if you take this too often, you can make your headaches worse?
Dr Katy Munro [00:28:26] I think the other thing is the availability of codeine over the counter in combination products that are labelled for migraine. And I’ve certainly had quite long and repeated conversations with some colleagues who are pharmacists who are going, yes, but people want that and people like that. And I’m like, well, this is why it’s not really a very good idea, and you do have to- because it’s so easily available, isn’t it?
Dr David Kernick [00:28:49] Jess knows I do some projects with medical students and one of them is working on a project at the moment targeting pharmacists for medication overuse headache. But interestingly, this particular one is their websites and he’s reviewed the websites. And I think as far I can remember, not one single- when they’re advertising migraine and stuff for migraine, not one of them mentions the possibility of medication overuse headache. So there’s lots of educational stuff needed for all levels of pharmacy.
Dr Jessica Briscoe [00:29:16] We’ve talked about medication overuse headache before because it’s one of our hobby horses, but between 40 and 80%, I know that’s a large percentage, but that’s how much is quoted in the literature of chronic migraine, is caused by medication overuse headache. It’s a significant problem. And actually, if you can get it, if you want to get in there before people get to medication overuse, so you want to stop it from happening. So actually, if you get the pharmacist to talk about it at that point, hopefully the problem, it will stop being such a problem. Because it’s horrible to manage.
Dr David Watson [00:29:42] It’s actually an really easy audit to do in practise as well, not obviously for over the counter treatments, but you can look at your top ten triptan users and probably most of them are medication overuse and probably not on prophylaxis and just reordering triptans all the time.
Dr. Richard Wood [00:29:55] But I would rather they were reordering their triptans than their co codamol for their migraine, for example.
Dr David Watson [00:29:59] For sure.
Dr. Richard Wood [00:30:00] Even in medication overuse headache it’s easier to get off a triptan than it is to get off co codamol. I think that’s a good point.
Dr Katy Munro [00:30:06] It’s also about telling people not to give the co codamol more to their kids, which is what I’ve come across a couple of times lately. Where did your daughter get the co codamol from? Oh, I gave it to her, said a rather shame-faced mum.
Dr David Watson [00:30:20] It wasn’t the tramadol they were given, then.
Dr Katy Munro [00:30:22] My goodness, no.
Dr Jessica Briscoe [00:30:23] Shall we talk a bit about CGRP because we haven’t actually spoken about it. We’ve alluded to a bit, but we haven’t really spoken about it yet.
Dr Katy Munro [00:30:30] We’re quite jealous of it being available in Scotland on the NHS and waiting to hear the decision of NICE about the Aimovig appeal and also a decision about ajovy. So can you tell us a bit more about how is it working with CGRP in Scotland.
Dr David Watson [00:30:46] We now have very clear pathways for migraine management. So if we follow our national SIGN guidelines, we would hope that general practitioners would be able to prescribe either propranolol, topiramate, candesartan or one of the tricyclic antidepressants. If they’re allowed or if they’re not tolerated, people can then move to another one and if those fail, to then come in to secondary care to see us at the headache clinic, we would then look at whether flunarizine is an option, which flunarizine is an unlicensed medicine in the UK and the USA. But second or third most common migraine treatment in the world. It costs about £6 or £7 a month. It’s not expensive and we can get it imported into the pharmacy, but it can cause tremor and depression, sedation, weight gain, so it’s not suitable for everyone. So we would have a pathway now that if you try the SIGN guideline treatments, you might be eligible for flunarizine. And if you’re not, you then get Botox if you’ve got chronic migraine and if Botox fails you can then use erenumab. One of the advances in Scotland, we have quite a small network of headache doctors. So we all met to discuss how we would use the CGRP medicines in Scotland so it would be fair around Scotland. So, erenumab was decided, although it has been approved similar to Botox, three failed oral preventers. We’ve decided in the first year to use it in our patients who’ve failed Botox. The interesting thing is that fremanezumab has been approved by the SMC for episodic migraine as well as chronic migraine.
Dr Jessica Briscoe [00:32:29] Yes I saw that.
Dr Katy Munro [00:32:29] Which is a floodgate opening?
Dr David Watson [00:32:30] Well, I did do a bit of a kind of speechless impersonation when I saw that, thinking, ‘oh, gosh’ and we wondered about floodgates and what’s going to be interesting to see what each health board’s formulary group make of it. So in Grampian, it is going to the formulary group in April, and we’re going to hope that they will let us use it for people with high frequency episodic.
Dr Jessica Briscoe [00:32:54] Yes because that’s a very difficult group to manage.
Dr David Watson [00:32:55] Because they’re not eligible for Botox. They’ve failed oral preventers. Where do you go next? So that’s a really logical place. I know in Glasgow they’ve got approval now for fremanezumab to use in patients who failed erenumab and we will probably get that in Aberdeen and for Grampian as well. One of our difficulties is just a practical difficulty for us is we don’t have a headache nurse. We’re advertising for a headache nurse so if anyone wants to come to Aberdeen and work as a headache nurse we would be delighted, but it means that we rely on Homecare which is a third party company delivering the medicine. So there’s been some technical issues about delivery, which has meant that the timescale for starting people has slipped a bit. But I’ve certainly, last week, had four patients in who were on erenumab and two have done really well and two the jury’s out a bit. But considering those are a patients who have failed oral preventers and they’d all failed flunarizine and Botox to then have a medicine that’s working. Now as we know the CGRP will probably work in maybe 50% of patients.
Dr Jessica Briscoe [00:34:05] So that’s interesting because I know St. Thomas’ did some research on refractory patients. So that’s patients who failed three or more plus Botox. And they actually had- I think that’s about the same as their responder rates so, I know you’ve got- that’s four people. So we are still waiting to see a bit more and we see a fair few as well.
Dr Katy Munro [00:34:25] Yeah, because we can prescribe it on a private basis to the people who are lucky enough to be able to afford it. But I think it’s really important to say that it’s not a wonder drug, that it doesn’t work for everybody. And you can get some very, very disappointed patients if they have spent a lot of money and spent three months trying it and literally it hasn’t worked. And we’ve seen a number of those. But we have- I would say, a third, a third, a third. I usually say to people, there’s a third who are magical, you know, find it amazing and it transforms them. A third who find it improves things by about 50% and a third who don’t really find that it’s terribly helpful. And that goes for both of the ones that we have used here.
Dr David Watson [00:35:09] My understanding of the science is that, you know, they don’t go into the brain or the percentage of them that goes into the brain is so small. So they’re acting on peripheral mechanisms. So patients who maybe- where the peripheral driver of their migraines is quite high they can be quite successful. But if it’s more of a central driver of the brain, they’re probably not as effective.
Dr Jessica Briscoe [00:35:28] That does actually make sense, completely.
Dr Katy Munro [00:35:30] Yeah.
Dr David Kernick [00:35:31] I just want to add- this metaphor of floodgates is an important one because this is a really important group of drugs for the reason this is the first time these sort of biological agents that are very expensive to manufacture, genetic manipulation, biologically made. It’s the first time that an expensive drug has been available for so many people potentially. That’s a really important development. So I just did a very quick back of the envelope calculation. If you can say just 10% of migraineurs would benefit, which I think is a reasonable conservative estimate, that’s going to cost the NHS at current prices about over £1,000,000,000 a year. So you’ve got to put it in context a little bit actually, it’s a great drug but-
Dr Katy Munro [00:36:07] But when you think migraine costs the UK £3.4 billion a year then maybe-
Dr Jessica Briscoe [00:36:14] It’s more than that. £10 billion.
Dr Katy Munro [00:36:15] It’s worth it?
Dr. Richard Wood [00:36:17] But who’s £10 Billion. Unfortunately from a commissioners point of view, whose budget? Whose budget are you saving?
Dr David Kernick [00:36:22] Silo budgets.
Dr. Richard Wood [00:36:22] Yeah. Silo budgets.
Dr Katy Munro [00:36:23] This is always the problem, isn’t it?
Dr David Kernick [00:36:25] So it’s a great drug, but the economics are tricky.
Dr Katy Munro [00:36:29] Yeah.
Dr David Watson [00:36:30] Can I say, the advantage for us in Scotland is we have unified health boards, so it’s one budget. So if I have a patient who has a 50% reduction in headache days and use five less sumatriptan subcutaneous a month, that’s an overall saving into the budget so we’re quite lucky that way.
Dr. Richard Wood [00:36:51] Except the budget is wider than that isn’t it? So if you have a drug which say improves productivity at work because there’s less migraine, then those businesses can theoretically improve their profit, but that’s at the expense of their NHS budget. Now, unless the profits of that business are shared with the NHS.
Dr Katy Munro [00:37:11] Yes.
Dr. Richard Wood [00:37:12] You would get these perverse incentives and it’s a tricky one.
Dr Katy Munro [00:37:15] It’s a tricky one.
Dr David Kernick [00:37:18] It’s never going to happen. NICE, when they look at cost effectiveness, will only consider national health service costs. They won’t consider any broader costs at all. And it will always be that way because we do operate- our economy operates in terms of siloed budgets. You can’t operate in any other way. Each organisation has to have their own budget. Tricky.
Dr Katy Munro [00:37:37] So watch this space because this is going to be something that we will come back to in another episode, hopefully after the NICE guidance has been made more clear in the next few weeks.
Dr Jessica Briscoe [00:37:48] Yeah. And there was actually something else I noticed that was slightly different that you pointed out about Flunarizine, because that’s something that we’ve suggested quite a lot and it’s very difficult in some areas to get hold of that medication. It is actually first line for hemiplegic migraine, again, a very rare type of migraine in children and adults. That we’ve often debated whether or not we should suggest it because its import costs are very expensive. So it’s really interesting that you say in Scotland it’s on your guidelines. So it’s in your guidelines so that you have a sort of fixed cost for how much you can import it for.
Dr David Watson [00:38:27] Yeah. We just get it imported into the hospital pharmacy. It’s prescribed in secondary care through the headache clinic. But that way there’s a- because obviously if each GP wrote a separate prescription each wholesale pharmacy can just name their price for importing it. Well we have a fixed contract and we’ve got probably over 100 patients on it and the pharmacist was saying to me the other day that it’s about £7 a month, so it’s not expensive to use.
Dr. Richard Wood [00:38:53] In England, my understanding is, it’s much more expensive. It’s, you know, you’re looking at £300-£320 a month. I mean-
Dr Katy Munro [00:39:02] Crazy.
Dr. Richard Wood [00:39:02] It’s crazy.
Dr David Kernick [00:39:04] It’s interesting. We use quite a bit of Flunarizine in fact and GP’s can prescribe it. It’s not licenced in the UK. There’s this difference between unlicensed drugs used off-licence and licenced drugs. But it is not licenced, but that doesn’t mean the GP can’t prescribe it on an ordinary prescription pad. The difficulty arises if something goes wrong, the GP gets sued and he or she is in all sorts of problems.
Dr Katy Munro [00:39:26] Even if it’s recommended by a specialist clinic?
Dr David Kernick [00:39:29] Yeah. It’s available all over the continent in adults and children. It’s available in Ireland. Licenced in Ireland for migraine. But for historical reasons it’s not available in the UK. It’s a pity because I think it’s a really useful drug.
Dr Jessica Briscoe [00:39:42] Yeah it can be. Absolutely.
Dr David Watson [00:39:42] It’s transformed some of my patients with vestibular migraine. Like I’ve got a gentleman who runs a motor company and was probably stopped seven or eight times on the motorway with his car taken away by the police because he just had some disabling vertigo. His wife had antisickness injections at home for him, and he’s had nothing like that now for years. But for what David was saying, that’s one of the reasons we do it through the hospital. Apart from the costs, it’s just the fact that to get around the issue of GP’s not wanting to prescribe an unlicenced medication. I have to fill a form in to say that I’m taking clinical responsibility for it before the pharmacist will order it.
Dr David Kernick [00:40:22] But we have an arrangement with our local primary care group that we can prescribe it ourselves from the clinic, so we prescribe it on an ordinary GP prescription pad with a special number, but that’s quite a one off.
Dr Katy Munro [00:40:32] So that is a real clear example of variability across the UK, isn’t it?
Dr David Kernick [00:40:35] Huge variability.
Dr. Richard Wood [00:40:37] GPs will be concerned about their prescribing budgets. Because they’re given a budget and if they go over that then essentially they are penalised, and this has big implications for that as well.
Dr Katy Munro [00:40:49] Yeah. So coming on to our wish list, I was thinking it might be useful if you’ve had a chance to think if there was maybe one or two things that you wished you could wave a magic wand and have happen. Any thoughts?
Dr David Kernick [00:41:06] From what perspective? Service delivery or treatments?
Dr Katy Munro [00:41:08] Service delivery really. Yeah.
Dr Jessica Briscoe [00:41:11] I was going to say the world’s your oyster, but we’ll go with service delivery.
Dr David Kernick [00:41:15] Shall I start.
Dr Katy Munro [00:41:16] Go on then, David?
Dr David Kernick [00:41:16] Well, the British Association for the Study of Headache looked at service delivery some years ago and came up with a model that the GP provides the baseline care, the first point of care. The second point of care should be intermediate care clinics run by GP’s with special interest and the third tier level should be proper tertiary headache centres in hospitals, not the general neurologists. And I think ideally that is the framework. At the moment there’s lots of different models and it always will be that because there’s no one model that suits all, but that’s the ideal model. And there are also practical implications to any models- not many people have got the spare time to come forward and train as GP’s with a special interest so there’s a manpower issue.
Dr Katy Munro [00:41:56] There’s also difficulties of GPwSIs, as we’re sometimes called, GP’s with a Special Interest, getting revalidated and recognised and medical health insurance companies don’t quite know how to charge you things like that.
Dr David Kernick [00:42:13] There are ways around that. So my ideal model would be to establish a whole network of general practitioners with special interests running intermediate care clinics, because GP’s are the people to manage headache, not neurologists.
Dr Katy Munro [00:42:23] So that’s what we need to work towards if we were going to Parliament and lobbying them.
Dr David Kernick [00:42:29] But having said that, there is never a one size fits all because each certain context- each local economy is different.
Dr Katy Munro [00:42:35] Yes. David, what would you say? Is there anything you wish you could change in Scotland?
Dr David Watson [00:42:42] I’d love to have my headache nurse and more than one headache nurse because certainly in Glasgow they’ve got a number of headache nurses which are really helpful because I think my special skill, if I can say it, is probably managing chronic migraine and how you juggle what medicines and all the rest of it. But you need the back up of a nurse with things like medication overuse headache, managing side effects, the patient education bit of it. So having a nurse would be really helpful.
Dr Katy Munro [00:43:14] We haven’t talked very much about nurses and I think practice nurses are also in a key place if they wanted to get upskilled and learn about it as a topic, it’s a really good place for a specialist nurse in a practice, isn’t it?
Dr Jessica Briscoe [00:43:28] Absolutely, it’s very good. How about you, Richard?
Dr. Richard Wood [00:43:31] So for me, it’s all about making that important diagnosis, which so often is not made. And my magic wand would be to make services which empower that. And what does that look like in practical terms? Well, for example, 20% of GP income is through what’s called incentive schemes where they are paid to increase the diagnosis and care of particular conditions. And I would like to see an incentive scheme for headache and migraine in particular in general practice so they’re incentivised to make that diagnosis and prescribe a triptan and with that they’re in parallel with all sorts of support from people like you and your podcasts and us in our communities to do that and keep it in primary care where it belongs.
Dr Katy Munro [00:44:22] Here here.
Dr Jessica Briscoe [00:44:22] Great.
Dr David Kernick [00:44:24] Good place to finish.
Dr David Watson [00:44:26] We don’t have that in Scotland, of course.
Dr Jessica Briscoe [00:44:30] So I think that’s probably a good place to leave it. Katy and I will both be talking to different colleagues from Northern Ireland, hopefully someone from Wales later on. I’ll be talking to a colleague from New Zealand and we will be talking to a colleague from the US as well.
Dr Katy Munro [00:44:45] Yes. So thanks for listening.
Dr Katy Munro [00:44:51] I’m talking today to Dr. Louise Rusk from Northern Ireland. So tell me about yourself, Louise, and how you got involved in looking after patients with headaches.
Dr. Louise Rusk [00:44:59] Hi, Katy. Yes. So my name is Louise Rusk. I have been interested in neurology the whole way through my sort of training and early career. I did a little bit of neurology, but left to train in general practice. But even then I still found myself drawn back to neurology, epilepsy and headache. I was one of the neurology teams just outside of Belfast. We started a headache clinic quite a few years ago, and so now, although most of the time I work as a GP, every Monday I run a headache clinic as part of the neurology team in this hospital.
Dr Katy Munro [00:45:39] And are there quite a few headache specialist GP’s in Northern Ireland?
Dr. Louise Rusk [00:45:42] No, so I was the first one, but we’ve been very fortunate in that Dr. Raeburn Forbes, who leads on head services in Northern Ireland, he’s a consultant neurologist. He has brought in two other GPs with special interest.
Dr Katy Munro [00:46:00] So the team is growing.
Dr. Louise Rusk [00:46:02] Yeah. They’re in a different area in Northern Ireland.
Dr Katy Munro [00:46:04] Okay. And I know in Northern Ireland you also have a special way of spreading information to GP’s who are maybe a bit geographically distant from you. Tell me about the neuro hub.
Dr. Louise Rusk [00:46:17] Yeah. So, in Northern Ireland, it always felt that the education was very Belfast centric, and yet with really rural population and the GP’s are obviously scattered rurally and so we got involved in this telementoring programme called Project Echo and we’ve been running neurology programmes once a month since, this is coming to the end of our second year of it. And basically what happens is that there’s a hub of specialists and on our hub we’ve got neurologists and GPs with special interest and we’ve got physiotherapists as well and a whole admin support. And then the spokes are our GPs or pharmacists who dial in from anywhere in Northern Ireland. So they can be sitting using this technology on their phone. They can be anywhere and they dial in and once a month we look at an area of neurology for example, the month that we did chronic migraine we had 35 I think GP areas that were represented. So they could, they can dial in anywhere from Liskey to Cullybackey.
Dr Katy Munro [00:47:41] So can they ask you if they’ve got a clinical case that they were struggling with or would they be that sort of thing? Or would it be more of a teaching module?
Dr. Louise Rusk [00:47:50] Yeah, well, it’s both actually. We are all the network of learners, so we’re learning from each other and the first 20 minutes of it is a presentation with up to date guidelines or best practise, and that’s delivered by The Hub. And the rest of it is all case-based discussions. So they’ll have sent in anonymized cases a couple of weeks in advance and then we will discuss that and rather than the GPs asking the hub to answer the questions, the questions will be thrown out to the network of GPs and when GPs are speaking to other GPs about how they might deal with that particular problem in their area, that’s where the real learning occurs.
Dr Katy Munro [00:48:36] A whole shared learning experience.
Dr. Louise Rusk [00:48:38] It’s a whole shared learning experience and the whole idea of it is to de-monopolise that specialist knowledge so it’s to share it from the central hub and then to improve confidence in the GPs who are involved. And in fact in our feedback at the end of year one that was, that was one thing that came across very strongly was that GPs felt more confident in neurology after the year programme was up.
Dr Katy Munro [00:49:11] And that can only be helpful to reduce waiting lists for hospital neurology appointments, can’t it?
Dr. Louise Rusk [00:49:20] That’s really what it’s designed for – is to address that growing demand for secondary care services and try and create some capacity. We have done two years of neurology and we’re hoping that we may be able to do a dedicated series of sessions just on headache because it’s I suppose it’s the most common neurological disorder that GP see and that’s what we need. We really want to see as GP’s being confident and equipped to deal with migraine in primary care rather than needing to refer to secondary care. And then it would mean that when they do refer, you know.
Dr Katy Munro [00:50:03] That the more complex cases will be seen more quickly, so I guess, won’t they?
Dr. Louise Rusk [00:50:08] Yeah.
Dr Katy Munro [00:50:08] So we were talking about this with some other GPs from around the UK and we were sort of trying to decide where you know, if we had a magic wand and we could change things, what we would find would be our priorities for trying to improve care for migraine or headache patients. Any thoughts about that?
Dr. Louise Rusk [00:50:28] Oh, that’s a big question. I mean, I think for patients with migraine, what they really want is somebody who knows about migraine in the community where they can access in a timely manner because the migraine might be flared up or they may be having lots of attacks but by the time they get to see somebody in a specialist clinic, either it has become chronic or it’s settled and they’ve just had to struggle along by themselves so getting it at the time, getting the help at the right time and in their locality would be massively helpful, I think, for people affected by migraine.
Dr Katy Munro [00:51:12] Yeah, I think I think we can all agree about that. I think that’s excellent. And the way that you’re spreading the education and the knowledge sounds like a really innovative, excellent way to do it.
Dr. Louise Rusk [00:51:24] Well, it is. At the time when we started it, it was actually the first neurology Project Echo in the EU. Project Echo is something that was worldwide and used for lots of different areas like blood borne viruses, palliative care, substance misuse. It’s all about education but we were, as far as we know, the first one in the EU. So that’s been quite something. But one of the really brilliant things that came off it, a GP who was in the North, very north of the country, she actually started to teach her colleagues in the general practice about headaches. So what they did was they decided they weren’t going to be referring people and they were all going to go through her.
Dr Katy Munro [00:52:12] Sort of cascading it out to other people, brilliant.
Dr. Louise Rusk [00:52:14] That’s really what we would hope for.
Dr Katy Munro [00:52:17] That sounds really excellent.
Dr. Louise Rusk [00:52:19] It’s been really useful when we’ve had pharmacists join because they give a different insight. So when those questions go out to us like what would you do as X, Y or Z? and we throw that back out to the network then, when pharmacists give us an insight, it’s been really helpful and I think it’s just good for strengthening those relationships between primary care, secondary care, pharmacist, physiotherapy.
Dr Katy Munro [00:52:48] And it’s really helpful if you’re doing that because then it reduces the thing which sometimes patients complain is that they have different advice from different people that they’re asking. If we’re all kind of giving the same advice that really helps, doesn’t it?
Dr. Louise Rusk [00:53:02] Yeah, yeah, yeah.
Dr Katy Munro [00:53:04] Okay. Thank you very much for joining me today. …..
Dr Jessica Briscoe [00:53:11] So for our Migraine Around the World episode, I’m now joined by Dr. Pyari Bose, he’s a consultant neurologist and headache specialist in New Zealand. So welcome, Pyari.
Dr Pyari Bose [00:53:22] Hello. Hi, Jessica.
Dr Jessica Briscoe [00:53:24] So do you just want to start off by doing a little introduction about who you are, where you work, and, because you’ve actually just moved from the UK, haven’t you? So a little bit about what type of service you work in at the moment.
Dr Pyari Bose [00:53:37] Yes. So I’m Pyari Bose. I’m a neurologist. I trained in the UK and I’ve moved to New Zealand about five months ago. I work at Auckland City Hospital, which is part of the Auckland District Health Board. It’s a university teaching hospital and one of the largest in New Zealand, with about 1024 beds. As part of my job, I also cover Middlemore Hospital, which is in South Auckland and we cater for a population of around 3 million people and I work in secondary care so I offer outpatient services and I also run a consult service for patients who are admitted in Auckland City Hospital and Middlemore Hospital.
Dr Jessica Briscoe [00:54:25] Okay, so first of all, how do patients actually get to see do they need to be referred by their general practitioner or do you get them from the hospital? This is talking about the headache service really?
Dr Pyari Bose [00:54:39] Yes, that’s a good question, Jessica. So, in the public health system at the moment, if they need to see me, it has to be a GP referral or one of my colleagues or one of the medical consultants has to do a referral. Whereas, if the patients admitted for headache related problems as an inpatient, then I do get referrals from the general medical team or emergency department, so I’ll have to review the patient in either the medical ward or the ED department.
Dr Jessica Briscoe [00:55:10] So that sounds quite similar to what happens here actually in our public health system that people get referred. Have you seen any particular differences with the type of cases that you’re seeing?
Dr Pyari Bose [00:55:22] In terms of the type of cases, I mean, it’s kind of similar to the UK in terms of presentation. So like, anywhere around the world, one of the commonest things that you see in the headache clinic is migraine. You know, sometimes it’s not recognised and that’s a common problem I guess, worldwide. So they are initially treated as like tension-type headache and things and it’s only later on when you pick up that’s actually migraine. And again you see the the trigeminal autonomic cephalagias, like cluster headache and all that, so I’ve had quite interesting cases and I think the presentation is no different from the UK, it’s just that there are not that many headache specialists in New Zealand so that’s a problem.
Dr Jessica Briscoe [00:56:14] Do you know roughly how many there are in New Zealand?
Dr Pyari Bose [00:56:19] So potentially about maybe three as a dedicated headache specialist. But as far as I’m aware, just like the UK, where we have like dedicated headache clinics or even in primary care, there are GPs with special interest in headache. We don’t have that in New Zealand and that’s one of the reasons why I got recruited in the hope that I can set up a headache service here. So that’s a bit different from the UK. There are so many headache clinics in the UK, but there are not that many in New Zealand.
Dr Jessica Briscoe [00:56:53] Yeah, I mean three doesn’t sound like very many at all. I know that the population is smaller in New Zealand than it is here, but it’s all it’s much more um – the access to medical care is very different, isn’t it, in the sense that there are some very remote areas in New Zealand? So I’m sure that some people probably have to travel quite a long way to get to see someone with a speciality if they’ve got one of the more rare forms of headache, actually. Is that true?
Dr Pyari Bose [00:57:18] Yes, you’re right. So the transport system, it’s not like, you know, in London you have the underground and the public transport system is pretty good, whereas in New Zealand it is quite difficult and it can be challenging because, maybe depending on where people live, it might be a three or four hour drive to where the hospitals are unless you’re living in the city. So yes, people do have to travel a long way to see a specialist and there might not be a specialist in the area where they live, so they have to travel long distances.
Dr Jessica Briscoe [00:57:55] Okay. So I suppose probably a bit of your role is also trying to educate primary care as well so that actually recognition of headache is better and so that sometimes these people wouldn’t necessarily have to come to your clinic if it’s quite difficult for them to access that service.
Dr Pyari Bose [00:58:14] Yes, that’s a good point, Jessica. So as I mentioned earlier, I’ve not come across any GP with special interest in headache in New Zealand so far. So many times when the patients do come to clinic, they might not have tried any preventive and maybe they are prescribed codeine straightaway. Auckland has done this really nice thing. They have created something called an Auckland Regional Health pathway and so pathways are written up for many conditions, including headache disorder, which is quite handy. It lists all the kind of preventive that GPs can try before the patients are sent into hospital. This is a relatively new thing, so we are trying to get GPs to become aware of this guidelines so that they can try that before patients come into hospital. The other problem is, because patients go straight away into things like codeine or tramadol and things, by the time they come to us we’ll have to address the medication overuse as well. So we are trying to make GPs more aware of the pathway which is actually quite handy for many conditions, including headache disorders.
Dr Jessica Briscoe [00:59:29] That’s excellent. I mean I think that’s the key, isn’t it? Trying to prevent things like medication overuse from happening before they even come through the clinic doors, because it can be such a stubborn problem to manage and that’s definitely a worldwide problem.
Dr Pyari Bose [00:59:44] Absolutely. Yes, absolutely.
Dr Jessica Briscoe [00:59:47] And how long often do people have to wait before they see you?
Dr Pyari Bose [00:59:50] So if they’re an inpatient, if they’ve come through ED department, then we get contacted for consults so there is no wait, we do see them. If they’re referred to the neurology clinic, so we have been going through our department data a couple of days ago, our department has 13 fulltime neurologists and nine part time neurologists, but we do cover a population of 3 million so our waiting list times are quite huge at the moment. It might be, unless there are red flags in the history, in which case we prioritise and they are seen within seven days, if there are no red flag signs in the clinic letter, then the waiting list time could be between 2 to 3 months at the moment.
Dr Jessica Briscoe [01:00:36] Okay. So that’s I mean, as you said, that’s quite significant if someone’s not had any management before they’ve seen you, waiting for that amount of time.
Dr Pyari Bose [01:00:48] That’s right. Yes.
Dr Jessica Briscoe [01:00:50] But possibly slightly shorter than the UK at the moment.
Dr Pyari Bose [01:00:55] Yes, but what the data was showing is, it’s actually quite creeping up so, you know, the demand is going up and we just don’t have the capacity. I guess that’s a worldwide problem and we are trying to address by recruiting more neurologists. But, of course, if the GP calls us and tells us certain red flag signs, they are prioritised and seen as soon as possible.
Dr Jessica Briscoe [01:01:21] I mean, I think you’re right. That seems to be the common theme that we’ve seen with all of the doctors we’ve spoken to. Actually it’s about trying to get more people interested in headache so that they can manage it so that people don’t necessarily have to get to clinic because sometimes there are things that can be done. Also educating patients as well so that people can recognise their own signs, know what sort of things that they can take over the counter, not taking codeine and things like that. So yeah, that seems to be a common theme worldwide at the moment.
Dr Pyari Bose [01:01:56] Yes. Jessica, you raised a valid point. So when I was working in the UK and, you probably know this as well, there were important patient-led migraine charities, for example, the Migraine Trust or migraine action, and they did push forward important aims like patient education and even they were driving research as well. So in New Zealand, when you compare that there are no headache-specific charities.
Dr Jessica Briscoe [01:02:26] Yes, I was going to ask about that, actually.
Dr Pyari Bose [01:02:28] So I mean, there are neurological charities, but, if you look into like investment and push into patient education into migraine or anything headache-related, there is no dedicated headache-related charity and that is something that needs looking into. And I’ll see if something can be set up, but it’s going to be a long road ahead.
Dr Jessica Briscoe [01:02:52] Yeah. That’s not something that can happen overnight really, is it?
Dr Pyari Bose [01:02:55] Yes.
Dr Jessica Briscoe [01:02:58] And how about other treatments that I know that people sometimes struggle to get hold of? I was thinking about things like Botox and I don’t know if the CGRP antagonists are available in New Zealand, but how easily available are those in Auckland at the moment?
Dr Pyari Bose [01:03:14] In the public health service, I mean, Botox is licenced for dystonia. We are not authorised to give it for migraine and similarly, CGRPs are not available on the public sector. The private sector is different. Both are available in the private sector. So, at the moment for headache management, what we have on the public sector is the preventive that you use like amitriptyline, topiramate, candesartan, propranolol and we have access to greater occipital nerve blocks. But interestingly, what we have access to relatively easily is dihydroergotamine. When I was working in the UK it was really hard to get dihydroergotamine and not that many hospitals had it. And when I was at King’s College, I think the cost of a course of dihydroergotamine varied between £2500 to £4000, whereas in Auckland the hospital board has managed to secure it at a cost of around $400 for the entire treatment. So that’s good in the sense that we can use that for our chronic migraine patients, chronic cluster patients and medication overuse.
Dr Jessica Briscoe [01:04:40] It might be quite useful to explain what dihyroergotamine is, I mean I think we have discussed it in a previous episode, but just for listeners that haven’t come across it before.
Dr Pyari Bose [01:04:50] Okay, so dihydroergotamine is a drug that is given via infusion and it is used to treat conditions like chronic migraine, medication overuse and chronic cluster headache when all other treatments have failed. This would require patients to be admitted in hospital and then they would be given drugs to prevent nausea first, pre-medicated with anti-nausea drugs. That’s because one of the big side effects with dihydroergotamine is nausea and vomiting. So once they are pre-medicated, we give this infusion. It usually is completed in about three days. The other major side effect to watch out for would be severe leg cramps. So it’s quite common for people to have leg cramps when this is given. We do keep them well hydrated to try and prevent that. So, I mean, this is a good treatment, relatively apart from the side effects that I mentioned about. But one thing is, if a patient has any kind of cardiac disease, especially ischaemic heart disease, then the drug would be contraindicated. So as long as they don’t have that, this is an option for treatment resistant and also for medication overuse headache disorders.
Dr Jessica Briscoe [01:06:13] I find it really interesting that that is more readily available actually than Botox because I mean, part of the reason it’s more difficult to get in the UK is because it requires an inpatient admission. I find that really interesting that that’s not cheaper as you said, but it’s also easier to get hold of than, and you don’t have the access to Botox, which obviously can be delivered in an outpatient setting so that’s really interesting.
Dr Pyari Bose [01:06:39] Yeah, that is true. So I guess the thing with Botox is it’s still expensive. DHE, what I’ve noticed is it’s been given for many years in Auckland and the nurses are all quite well trained to give it and we have a dedicated protocol so everyone, every staff member knows how to give it and they are well-trained for it. Whereas in the UK there were just a few centres that did it and they needed training and all that so it was relatively harder. But yeah, I guess the cost of the drug is also a major thing because the $400 is, you know, somewhere around £200 and that was way cheaper than what it was being bought for in the UK I guess.
Dr Jessica Briscoe [01:07:33] Great. I think we probably finish up on is that. Is there anything that you’d like to see happen with the headache service in New Zealand, any sort of goals that you have for or things that you’d like to see improved upon, at the moment?
Dr Pyari Bose [01:07:50] Yes. So headache in New Zealand doesn’t get the same investment as some of the other subspecialties in neurology, for example, stroke and multiple sclerosis get, so I do want that improved because it’s one of the commonest reason for referral to neurology and it’s such a shame that it doesn’t get an equivalent amount of funding and there’s no prevalence study of headache disorders done in New Zealand, especially within the native Maori population. We just don’t know what the extent of headache in that community is. So it would be good to study the extent and also have a service which is accessible to the population and I’m hoping that over the years they can try and set that up.
Dr Jessica Briscoe [01:08:41] Well, thank you so much for speaking to us today. I think our listeners will find it really interesting, actually, to hear about the differences in service in New Zealand.
Dr Pyari Bose [01:08:50] Thank you, Jessica. ….
Dr Katy Munro [01:08:55] Now I’m going to talk to Angie Glaser, who is a migraine advocate and migraine patient from the United States on the sunny state of California. Hi, Angie.
Angie Glaser [01:09:06] Hi, Katy. Nice to talk to you.
Dr Katy Munro [01:09:08] Thanks for joining us. We really wanted to hear how things are for you in the United States with regards to migraine and how it all works over there. So, how if you’re a migraine sufferer or you’re suspecting that you might have migraine, how would you go about getting a diagnosis in the first place?
Angie Glaser [01:09:28] Right. So most people in the United States will first talk to their family doctor or their primary care physician about their migraine symptoms. And if your family doctor is knowledgeable, they can make that diagnosis of migraine based on the symptoms you’re experiencing and maybe some family history.
Dr Katy Munro [01:09:47] Yeah.
Angie Glaser [01:09:48] But the primary care doctors in the United States on average only get about 4 hours of education for all headache disorders. And there’s, I think, more than 200 so it is possible to get the wrong diagnosis from your family doctor. In my case, I was correctly diagnosed with migraine as a very young child, I was three and a half, by my paediatrician.
Dr Katy Munro [01:10:14] Oh, wow.
Angie Glaser [01:10:15] Yes. He nailed it. He got it correct. But when I was about nine or ten, I went back to a different paediatrician. I was having headaches and stomach aches and that doctor diagnosed me with sinus headaches and anxiety, when it’s possible I was experiencing migraine.
Dr Katy Munro [01:10:34] Yeah.
Angie Glaser [01:10:35] So a lot of people actually will get a diagnosis of sinus headaches or sinusitis or even tension headaches when they actually have migraine.
Dr Katy Munro [01:10:45] I think that’s the same over here as well. Yeah.
Angie Glaser [01:10:49] I can certainly see that happening around the world, actually. So if your PCP is knowledgeable and they know migraine, they can certainly diagnose and even successfully treat migraine but there are certainly doctors who just don’t have that knowledge to make that accurate diagnosis.
Dr Katy Munro [01:11:07] So would they quite quickly pass you on to a neurologist if they were unsure, or would most family doctors say, well, yes, I’ll give you various medications and we’ll try this and try that before they refer you? How quickly would you get referred on?
Angie Glaser [01:11:24] If your doctor does not feel comfortable treating, or if you have maybe a more severe case where you’re severely impacted, then they will refer you to a neurologist or even a board certified headache specialist. But if your doctor has treated people with migraine before and they’re comfortable prescribing at least that first line of treatment, you can certainly get quality care from your headache doctor. But I would say most people who have migraine, and certainly chronic migraine, will get that referral to a neurologist or a headache specialist.
Dr Katy Munro [01:11:58] So how easy is it to find a neurologist who has a special interest in headache?
Angie Glaser [01:12:05] It’s not too easy, unfortunately. So most neurologists are kind of general neurologists who study the brain and all the nerves, and they’re kind of in the same boat as primary care doctors, but they don’t get a lot of training in headache specifically, in medical school. But if you can get to a UCNS board certified headache specialist, these doctors and registered nurses treat headache disorders day after day so they’re the ones who can really diagnose, really parse out your diagnosis, make sure you have an accurate diagnosis, and they’ll be able to treat you really effectively. They are more likely to have access to newer therapies and they’re more likely, I think, to look at kind of the whole picture and treat some of the co-morbidities that happen with migraine. The problem with these doctors is there’s about 580 of them in the entire country of these board certified headache specialists. That’s 580 to treat 44 million people in the U.S. with migraine. So there’s just not enough, there’s a shortage and there are some states where they only have one or even none. So it’s possible if you live in a rural area, even if you get that referral, it can be really hard to track down a doctor in your area that can treat you and, of course, they have long wait times because they see so many patients.
Dr Katy Munro [01:13:29] I know that recently you’ve been on a journey to advocate for more headache specialists and more investment in research into migraine and headaches on the Headache on the Hill weekend recently – there was quite a gathering, I believe.
Angie Glaser [01:13:46] Yes. So every year a whole bunch of patient and physician advocates descend on Washington, D.C., every February and we all come together to ask our representatives in Congress for one specific thing called “an ask” and this year our ask was centred around more funding, federal funding, to train and certify these headache specialists. This year, I think, that was our largest year, Headache on the Hill, we had 173 people from 45 states, all talking to the representatives, asking for more funding.
Dr Katy Munro [01:14:27] Did you feel that your message was heard? What do you think of the chances of that being taken forward?
Angie Glaser [01:14:33] Yes, we’ve already had an update. There’s a handful, I think we have 4 to 6, more co-sponsors on the bill that we were pushing through. The folks that I met with, the major reaction seems to just be surprise. Once we throw in some stats on how prevalent it is and how huge the headache doctor shortage is, they’re mostly just surprised that it’s such a huge problem that they haven’t heard about yet. So I’d say overall, it’s been pretty receptive, but it’s certainly a push.
Dr Katy Munro [01:15:16] I think it’s true that there is such a level of ignorance about how common and how debilitating chronic migraine, in particular, can be in people’s lives and we hear this a lot at the National Migraine Centre, that people have had to shut down their lives, or lost their jobs or whatever. And yet, why do you think it is that people, because it’s so common, why don’t people know about it? What is it that we need to be doing to raise the awareness of this condition?
Angie Glaser [01:15:45] That is a very great question. I think there is a lot of stigma even amongst doctors. I think people with migraine, it’s so easy to not talk about it and to just kind of hide it and take care of it on your own. I certainly hid it from my teachers when I was going to school. I hid it from my professors in college. I hid it from my employers. My first couple of jobs, that was just kind of the way growing up with this invisible, episodic disease, that it just worked well for me to hide it. When I came out and talked about it, I wasn’t necessarily getting a lot of validation or support from the folks around me because they just didn’t know, so I just kind of learned to just handle it on my own and I think that experience is really common, especially because it runs in families. If you see your mom, is this something this is she’s kind of just sucked up and dealt with on her own, you know, taking care of it, take a day off if she needs to, but hasn’t really made the steps to kind of talk to her doctor or even the people around her about how to support her. It can be really easy to just tuck it away and, unfortunately, that means it’s easier for physicians and even folks higher up in government who are allocating these research dollars. It makes it easy for them to ignore it if it’s kind of in the dark.
Dr Katy Munro [01:17:12] Yeah, I think you’re right. I feel the thing, of course, is that people who have chronic migraine are often so unwell that they can’t be advocating for themselves. I think that’s part of it as well. But definitely the hiding it, I heard that from a patient the other day. She said she had finally got a CGP injectable treatment that had transformed her life and she said even my friends didn’t know that I’d had migraine for 35 years and they just thought I was antisocial. She was very happy. I know in the States you’ve had access to some of the new, exciting new treatments for migraine much quicker than we get over here in the UK. How easy is it, though, to get those kind of new treatments? I’m thinking about the the CGRP drugs and then there’s some more acute things coming through like Lasmitidan and some of the Gepant tablets.
Angie Glaser [01:18:12] Yes.
Dr Katy Munro [01:18:13] Have you tried any of them or have you had any difficulties getting them?
Angie Glaser [01:18:17] I have. I tried a couple of the CGRPs and I have a prescription for a Gepant that I have to fill. I’m in the process of switching insurance so I have some insight into both private, commercial insurance and Medicare, accessing these treatments on Medicare. And it really, because we have so many different insurance options in the United States, your access to these new therapies is really going to depend on your insurance. And unfortunately, the drug companies, when they’re setting the prices and the programmes for these drugs, they’re mostly looking at people with commercial insurance. So they’ll come up with a programme where their drug is, say, $80 a pill, and then they have this copay card that you can give to your pharmacist and now your drug’s only $1 a pill. That’s eligible for the first year so that’s great. You get access to this brand new drug for almost nothing, for a very affordable price. The problem is, once that year is up, then suddenly you have kind of sticker shock, because you’re depending on your insurances, you could be on the hook for up to 50% of that cost.
Dr Katy Munro [01:19:30] Uh huh.
Angie Glaser [01:19:31] And then folks who have any kind of government funded assurance, so Medicare, Medicaid or TRICARE, they’re actually federally excluded. There’s a law that says these kind of co-pay programmes, these like magic coupons won’t work for Medicare. You’re not allowed to use those on Medicare. So some of these folks who are the most impacted by migraine actually have the most difficulty in accessing these new treatments. And it generally means once you get , say you’re on Medicare and you get a prescription for an anti-CGRP, it generally means you’re going to have to go through a couple of rounds of paperwork with your insurance company. These prior authorisation forms, they’re called. And, in my case, when I was on Medicare Insurance, once I went through, I think two or three months, two or three rounds of paperwork that my doctor kept telling them I really needed this drug because it wasn’t included on the list of drugs that my insurance company that covers my drugs, it’s not on their preferred list. That meant they would cover 50% of it so it’s technically covered by my insurance, but I’m still on the hook for about $300 a month so it’s really very variable.
Dr Katy Munro [01:20:48] Very expensive. So commercial insurance is that usually through people’s employment.
Angie Glaser [01:20:54] Yes.
Dr Katy Munro [01:20:56] So, of course, as you say, people with chronic migraine may have not been able to work. And so they are, as you say, most impacted for not being able to obtain these really expensive drugs so very different. Here in the UK we have to wait until NICE, the organisation that approves whether or not things can be available on the NHS, decides that it’s cost effective and we are in that situation at the moment with two of the CGRP drugs. But, once it’s approved on the NHS, then it’s usually tightly controlled as to who can get access to it and there are long waiting lists. So finally, some people may get these things through for free, but there is a bit of a journey before they can get them. So it’s very frustrating for people who hear about these medications and are desperate and would like to try them and there are obstacles all along the way, aren’t there?
Angie Glaser [01:21:56] Yes, there really are. It is very frustrating. It does put quite a bit of burden back on the patient and the doctors.
Dr Katy Munro [01:22:04] Yeah, yeah. Definitely does.
Angie Glaser [01:22:08] And I want to mention a couple, there are a couple of groups in the United States that have some really helpful resources for helping navigate the insurance issues. There’s CHAMP, the Coalition for Headache and Migraine Patients. It’s a group of nonprofits and for-profit companies in the States and, on their website, headachemigraine.org. they actually have a guide to each one of these new therapies, those devices and medications. So the CGRP and it’s new devices and they kind of go through the details of the different co-pay programmes available and the cost. So, if you’re in the United States and you want to know how do I even begin to get access to one of these new things, headachemigraine.org has a lot of information there.
Dr Katy Munro [01:22:55] Okay. That’s pretty useful. Okay. And your organisation is called Migraine Again?
Angie Glaser [01:23:03] Yes. So I’m a senior editor for a website called Migraine Again, migraineagain.com, where we offer free evidence-based, supportive information about living with and treating migraine. And, kind of our mission statement at Migraine Again is to help people suffer less and live more until there’s a cure. And our problem that we see is education and advocating. There’s a lot of work that goes into getting successful treatment and you have to kind of continue to advocate for yourself along the way. In my case, I’ve certainly found that learning about what I’m going through and understanding as much as I can about the obstacles that may be in my way really helps me feel more equipped to kind of navigate those obstacles.
Dr Katy Munro [01:23:53] Yeah, and, I think, you and I agree that learning as much as you can about migraine for yourself is a really helpful thing to do. and certainly I’ve read some of your blogs from the Migraine Again website and they’re really comprehensive and useful and hopefully people listening to the podcast will feel the same about the information we’re giving. Okay. Well, that’s really helpful. Thank you so much for joining me on the podcast and good luck with all your advocacy work in the States.
Angie Glaser [01:24:22] Thank you so much for having me. It’s been really fun…..
Dr Katy Munro [01:24:28] So we hope you’ve enjoyed our contributions from people all around the UK and beyond. We were really hoping to get somebody to talk to us about the state of headache care in Wales. But, despite our best efforts, our contacts in the neurology departments and people in Wales who we know are suffering from migraine haven’t been able to give us a recording up to date, so unfortunately, partly due to the severity of their chronic migraine and partly due to the pressures of COVID 19, rather taking precedence, we aren’t able to speak about Wales, but we do know that there have been great difficulties in accessing specialist headache care in Wales recently and we understand that work is in progress to improve the situation so I really hope that that’s going to help. But we can help, can’t we, Jess?
Dr Jessica Briscoe [01:25:23] Yeah. So I think it’s really important that with the current pandemic crisis, we think it’s really important to keep offering appointments for people who suffer with migraine or any other type of recurrent headache during this time of COVID 19 restrictions. So we offer appointments with our specialist doctors by phone, Skype or Zoom. So we’re keeping up to date with the isolation conditions. Help us to support the NHS by relieving them of these sorts of calls.
Dr Katy Munro [01:25:55] Yes, I think it’s really important. We’re so grateful to the NHS for supporting everybody. We as a charity, if we can do anything to take the pressure off by dealing with your queries about migraine or recurrent headaches, please get on to our website, fill in the booking form or give us a ring. Thank you for listening.
[01:26:16] 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.
This transcript is based on a past episode of the Heads Up podcast and reflects information available at the time of broadcast – some facts may have changed or new treatments become available since.
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