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SA: Hello and welcome to Practicing Paediatrics. In this series, we'll be showcasing the specialist work of the clinical staff here at Great Ormond Street Hospital. There are over 60 different clinical specialties at GOSH, providing tertiary and quaternary level care for many rare conditions. So if you are hoping to learn a little bit more about a unique condition or intervention, or just find out more about the advances at GOSH, this may be the series for you.
I'm Dr. Sarah Ahmed, a paediatric registrar and the current digital learning education fellow here at Great Ormond Street.
In today's episode, we will be speaking with Dr. Glyn Williams, a consultant in paediatric anaesthesia and pain management. Dr. Williams is the clinical lead for pain management at GOSH, and is currently in the process of setting up a new paediatric pain rehabilitation program. We're going to be talking to him about managing paediatric pain and the services at GOSH. We already have a podcast episode about acute pain in children called GASpods: Acute Pain. In that two-part episode, we talked to Dr. Helen Laycock about acute pain in children. We may cover a few of the same points in this episode, but this episode will go beyond acute pain to discuss chronic pain and pain rehab. Make sure you check out the episode that we did with Dr. Helen Laycock as that, with this, will give you a wonderful overview of pain in children and the services at Great Ormond Street.
Glyn, thank you so much for coming on the show today.
GW: It's a pleasure to be here.
SA: So let's start with some learning objectives. What would you like people to get out of listening to this podcast?
GW: I think the main thing is understanding what pain is. We're going to talk a lot about the biopsychosocial sort of formulation or the way pain is assessed in a biopsychosocial way. And I think that's really, really important for everyone to understand that about pain, acute pain, as well as chronic pain.
I would like them to know what sort of patients we see and, and how we treat them. And also maybe take away a little bit from that understanding so that they feel a bit more confident about one, treating children that they have under their own care, and two, knowing who to refer to us and who maybe isn't appropriate to refer to us.
SA: Hopefully we'll cover all of those today and it sounds like we're going to have a really interesting discussion. So let's jump in before we specifically start talking about paediatric pain rehab I think we should talk a little bit about paediatric pain. So everyone feels pain, obviously. How is paediatric pain different to adult pain?
GW: Well, I think first of all, we have to start thinking about pain itself. And as you said, everyone feels pain, and we're very aware of that. It used to be, you know, when I first started medicine people used to think young babies didn't feel pain at all. And we obviously now very much know that, or the current thinking will be that that's absolutely not true.
But pain is a very subjective experience. We all have individual experiences to pain. And also as a coming back to the main, one of the main themes is that we adopt a biopsychosocial approach to thinking about pain, diagnosing pain and making a formulation around pain. And what that really means is that there's biological factors for your pain, there's psychological factors for your pain and social factors for your pain. And all of those things come together for each of us as an individual to give us the pain that we experience. So, you know, the idea that you just have a certain stimulus, whether it be an injury or an illness or a procedure or something like that, and you feel a certain level of pain is just not true. You know, you have to put that pain into the context of the individual and the context that they're in. And our bodies are sort of very much set up for that in the sense that we have pathways within our nervous system, which are pain pathways. So a little bit like a computer, we, we have the hardware within our body for pain and that if you like measures or tells us when we're in pain, it tells us where the pain is and gives our bodies response to the pain. But alongside that, we have all the things that make us an individual. All the things that are happening to us in that moment, or things that might be happening around us, what our thoughts, what our feelings are, where our emotions are playing out at that point, what our preconceived ideas might be, things that have happened to us in the past, and then sort of socially, what's happening with our family, what's happening with our friends, what's happening in the world around us, what's important to us to put it in a contextual way, and maybe a cultural way, and also a spiritual way, you know, a lot about what our beliefs are, etc.
And all of those things come together and actually play into those pain pathways that they have and affect how they work and also affect how we feel pain. So whenever we talk about any pain, we have to think about it in that context, and that's very much about what we do within the pain service and pain management.
So when we're trying to think, what's the difference between adults and children? You know, all of that is happening in a young child as much as it's happening in an adult. But there are different factors going on. And so a big one to begin with will be development.
So when you're first born, your nervous system is incredibly plastic. And so it responds to stimulation around you as you grow and develop, and it's meant to do that in a very programmed and targeted way so that we develop our senses, you know, with time and pain is no different from your eyesight, from your hearing, etc. And so when somebody is growing and developing in that way, and their pain pathways are changing, you know, potentially they're going to experience pain in a different way, and they're also going to have a response to analgesics in a different way, depending on what you give. But equally, you know, growth and development happens beyond that as well. So there's obviously a huge difference between us all as an infant toddler and us as the grumpy teenager. And so you're also developing if you like, in a psychosocial way, as well as a biological way in terms of your physical attributes, but also your thoughts, your feelings, the way you approach situations, your spiritual developments, you know, also then what's happening with school, with friends, with the world around you, relationships with your family, etc.
It's all a big soup that comes together. And so if you can imagine that all of those things might impact on your pain, they will also impact on the way an individual will experience pain at different phases of their life. So it's a really complicated picture. And, as a pain physician, I need to be aware of that, and so, I might be dealing one day with a little preemie neonate who's had an operation and needs their pain relief and it's very much I have to understand then maybe more about the physical side of it and what's happening during development to their pain pathways and their nervous system, but equally, you know, even at that age, those other contextual fractures will have an impact for them.
But then I might be seeing a 16, 17 year old in the pain clinic with a more functional type pain diagnosis, who, you know, has a lot of those other contextual factors that are important to a teenager going on for them. So there's huge variation. And so it's not an easy demarcation just to say, what's the difference between an adult and a child, because even within the paediatrics, there's so many differences. But equally, as I think we'll come on to, that we also see a slightly different spectrum of disease and pain presentation in the paediatric population than we do in adults.
SA: Should we go on and talk a little bit about that? So the service that you've set up is paediatric pain rehab, and that kind of leads us onto thinking about acute pain versus chronic pain. Can you tell us a little bit about that difference?
GW: Well, the important thing to do there is actually to define pain itself first. And so the International Association for the Study of Pain has brought out a definition for pain. And so pain is an unpleasant sensory and emotional experience associated with or resembling that associated with, actual or potential tissue damage. And so that's the sort of basis on which we describe pain. Then if you want to talk about the difference between adult and chronic, it's not that there is a difference in that. Okay, what it really comes down to is time. And so the accepted convention is that if you've had your pain for more than three months, then it's become chronic.
And so, a fairly simplistic way of looking at it is that, you know, if somebody has an injury or an illness, you would normally expect that to have healed or the tissue damage from it to have been healed by three months. And so, therefore, if the pain is persisting beyond three months, then the idea that it's become chronic, it's not really that the pain as such is any different. It certainly might not be different in the way that the person is experiencing that pain. You know, we haven't got time to go into a major neurobiology sort of podcast but, and yes, there were some changes potentially can happen within the pain pathways themselves or within your nervous system that might lead to chronicity or could be defined as chronicity. But essentially you know, the definition of pain is there and there doesn't actually have to be tissue damage for it to happen, you know, and we see a lot of young people, we see a lot of adults as well, who have pain where there doesn't seem to be any organic origin to it or pathological origin to it. But it's that time difference over the period that leads to the chronicity of pain.
SA: Yeah, absolutely. It really is such a holistic specialty in a way that I think a lot of doctors don't really appreciate, because when we...get taught pain, certainly in medical school, maybe this has changed, we get taught about kind of pain ladders, analgesic ladders, that all you need to do is kind of escalate up and you'll solve things and it's so much more nuanced and so much more holistic than that.
GW: I think you're absolutely right, but I think it goes beyond medical school or, you know, or, or medical training. We have that culturally, you know, culturally, you know, it's very much the idea means adverts on television promote this as much as anything, you know, somebody has an injury or an illness or whatever it might be, and you give something and that pain goes away. So it's that very on off idea of pain, but from all that we know about pain now, that just does not make sense. And so if you're going to help somebody with their pain and essentially you're helping them with the impact that the pain is happening on their day to day life and trying to improve their quality of life and trying to teach them strategies to help them manage their pain. You need to understand all the factors that are going into that pain. And that's…although, you know, that is more seen in a chronic pain clinic, that's as true for the child on the ward who has an injury or an illness, you know, just thinking that because they had the operation yesterday, it's all completely physical pain. And as long as you give pharmacology, you're going to take that pain away. You're probably not going to be as successful as you could be in managing that pain. I'm not saying it's not important that you do that. Of course it is. But you also have to understand that the other contexts around what's going on for that child.
An example of that is anxiety. And we know from a lot of literature that we have that an anxious child and indeed an anxious parent or a child or a parent who are having sort of catastrophic thoughts about the illness or the injury that the child has are likely to have more pain. And that pain is more difficult to treat.
SA: Absolutely. It's such, it's such a tangled web, isn't it? And I suppose a lot of it is about unravelling that and trying to figure out all the different threads.
GW: Absolutely. Yes. And we spend an awful lot of time and that's, you know, why we, we approach pain management in the way that we do, because it's critical that you unravel all of those things. And you don't necessarily always do it at the first consultation that you have. Often it can take a long time and it can take building relationships between you, the patient and the family to get to the bottom of all of those factors.
SA: Yeah, so let's go on and talk a little bit about that service that you run at Great Ormond Streets. What kind of children do you see?
GW: Well, we see a lot. I mean, I know you've had a podcast about acute pain, so I won't talk about that. But it obviously is a huge part of our service. You know, we do inpatient ward rounds every single day and we do thousands and thousands of consultations every year. So that that is, if you like, the main hub of our work.
But we also have an outpatient chronic pain service as well. And we see somewhere between 250 300 new referrals a year. And we see a lot of different things. I mean, and we're also not necessarily seeing all the pain that there is. The most common diagnosis for chronic pain in children is headache. But actually we, you know, very lucky here with Dr. Prabhakar and his team, and we have a headache service at Great Ormond Street. And so a child who has either solely headache or headache is their main pain concern is likely to be referred to them, or to neurology service elsewhere.
The second, probably most common cause of pain in children is what's called widespread musculoskeletal pain. So it's the child who comes with pain in all areas of their body. You know, it links in, although hypermobility is not a diagnosis and it's not a cause of chronic pain, but they tend to be seen by our rheumatology service. So, the patients that we see are maybe the more localized musculoskeletal pains. We see a lot of neuropathic pain. We see a lot of abdominal pain. We see pelvic genital urinal type pain. And we also see quite a lot of children who have unexplained pain. And, you know, it depends how you want to define this. And there's lots of debate about what you should call it. You know, some people call it medically unexplained symptoms. And other people don't like that. Some people call it somatic or functional presentations, and other people don't like that. But you can, as I said earlier on, there are a lot of children out there, and adults as well, who experience symptoms with no obvious underlying pathology associated with them. And pain is, you know, one of those symptoms. And so we will see young people who present in that way. But we have to be quite careful because usually they're incredibly complex children and, you know, pain might not be the only presentation that they have. And so trying to work out whether they're suitable for a pain management clinic or whether they're suitable for another avenue of treatment is often a tricky thing. And, you know, that's where referrals, clear, concise referrals and conversations between healthcare professionals is very, very important.
SA: And do you have specific referral criteria? Because you're seeing kids, I assume, not just from within GOSH, but from throughout London.
GW: We're a nationally commissioned service. So we will see, patients from all over the country. There's, there's only two nationally commissioned paediatric pain services, which are us and Sheffield. And then paediatric pain services are dotted around the country. And the commissioning is all a bit haphazard depending on what their local circumstances are. But it's one of those things unfortunately that paediatric pain is not well covered by the NHS and there's sort of quite large geographical variations in whether you can access a service locally. And also because we're sort of quite a big service, and we deal with quite complex cases as well as the more straightforward cases, you know, we tend to get referrals from all over, depending on what the child's needs are.
But who we will see, we will see patients up to the age of 18, which is maybe unusual for paediatric services. And that's really because adult services won't touch children who are under 18. And so you can't have 16 to, you know, the 16 and 17 year olds just sitting in a no man's land. So we, we will see them.
For the chronic pain clinic, you know, we, we take that definition of chronic pain. And so the pain should have been present for more than three months. We only take referrals from secondary care, and so, therefore, the child already needs to be under a clinician that is responsible for their care, because although we're a speciality service dealing with pain, you know, quite often, all these children, A, come with sort of diagnosis that is beyond the pain. And so they definitely need that paediatric care to wrap around them. But equally, you know, we don't have unlimited services. And so you need somebody who's responsible for the child who knows how to access local services. And is able to get hold of what the child might need in terms of ongoing care. But equally as a specialty service, we have a limited time that we will see a patient for. So, when a patient comes to us, we see them for 2 years and we have a pathway and within that 2 years, we will have and should have been able to deliver pain management. And, you know, whatever the individual patient needs in terms of pain management, we should be able to deliver that. And if it's not being particularly successful, we can go around the MDT assessment again and refine that. But in some ways, if after two years, what we're delivering is not being successful for them, then we're probably not the right service. And they maybe need another approach to what their ongoing problems are. But equally, you know, two years is a very good time. And we see an awful lot of children, we treat them extremely well. And within two years, it's perfectly good thing that they're being discharged.
Alongside that we, you know, we're not an investigation service. We would expect all the investigations to be done and any diagnoses being made. And also if there's treatments that happen or need to happen that they are done or, or, you know, depending, it very much depends on the diagnosis, but it might be that they need to be complete or that they need to be ongoing at that point.
But one of the things sometimes it can be a grey area and we very much welcome discussion. And so we also run something called a clinician support service. And so we would actively encourage people who feel that they have a patient who may be suitable for our service to use this clinician support service, contact us and have a conversation. And then then it can become far clearer. You know, whether they're the right patient for our service or not the right patient for our service, but equally we can give advice at that point, which may also mean that they don't need to be referred. Or that things can be put in place before the referral, you know, might come to fruition.
SA: I bet clinicians find that service really helpful. That idea that you have someone that you can chat to without having to make a full referral.
GW: Yes. I hope they do. They all seem very grateful for it when they, when they phone up.
SA: So once that child is within your, your service, let's talk a little bit about the management. I'm guessing that because you take such a biopsychosocial approach, it is a full MDT management strategy.
GW: Absolutely. Yeah. So it, you know, if a referral is accepted and they'll come to the first clinic appointments and, we’re very lucky. We have quite a lot of time. So we have about an hour and a half when we see our first patient.
SA: That's not heard of, isn't it, really?
GW: Yes, yeah, no, but it's really important. So, you know, they will be seen and I will, you know, there's a physician, there's a clinical nurse specialist, there's a physiotherapist and there is a psychologist. And so the four of us will see the patient and their family. Obviously we'll take a history along that biopsychosocial framework that I suggested earlier. And all of us will be involved in that. Obviously, we'll all take different part of the history. We'll examine the patient. And that will probably use up half an hour to three quarters of an hour of a consultation. And then we would then talk between ourselves briefly and make a formulation again using that biopsychosocial framework and come up with a treatment plan. And then we would obviously discuss and explain that treatment plan. And so we, that's where the other 45 minutes or so, if you like, comes in. Because that's a really crucial time that we have with the family, because as you know, as we've already talked about, we're probably introducing a message about pain and a message about what we're suffering from that is slightly different than they're expecting. Both culturally, you know, they often come to us thinking they'll you must be GOS, you've got that magic wand under the table that
SA: That magic pill.
GW: And you're going to give it to us and everything's going to be great. And, you know, we don't have that. So, you know, being able to sit there and explain, help them understand they don't always get it the first time but what you've done is you've set the framework for what's going to happen in the future and set the framework for that two years that you're talking about. And you've also set the framework that they know that every time that they interact with someone from your service, that's always going to be the ethos and the message that they're going to hear. And so slowly that helps them assimilate the knowledge and assimilate the education. And what we do know is that pain education, which is what this is essentially, forms an incredibly important part of a patient's treatment. And education, or good pain education is good outcome or, you know, helps promote good outcomes. And there's a very good paper by somebody called Schechter who comes from New York, who tries to equate that first consultation you have with a pain patient to the sort of golden hour that you might have in trauma before a patient comes into into hospital. And so it's really taking that first opportunity in the first period of time you have with the patient to put in really good management. If you can do that, it is likely to give you better outcomes.
SA: I'll make sure that paper is linked down below because it sounds…a lot of it is about reframing, but I also think that's really important and getting everyone on the same page must make such a difference, as you said. Should we talk a little bit about how the new service fits in with this? So the Pediatric Pain Rehab Service.
GW: Sure. So, you know, from what I've said because it's a multidisciplinary assessment, the treatment plans that we offer, they're obviously individualized, but they come down along a framework of pain education, physical therapy, psychological interventions, non-pharmacological strategies. And medical. And I put medical deliberately last because that's the least common and probably the least effective things. That we do also occupational therapy is very important. And up until now, we haven't had an occupational therapist associated with our service.
So what you're trying to do is, depending on what that patient needs, you put in some combination of those things, and that's the way we've been doing it for a long time, and it's successful, and that is where the evidence is at for the management of pain, you know, generally. So all other centres around the world are doing the same thing.
The difficulty you have is actually the resource. So, you know, with the best will in the world, if you have a child who needs, say, physical therapy, psychological therapy, pain education, we have to deliver those in individual silos because that's where the, that's where the resource is. And also if you can imagine, even for a big service like, ours, we have here, I have one whole time, the equivalent of one whole time psychologist and the equivalent of one whole time physiotherapist for the whole service.
And so, you know, it's unrealistic to think that we can provide all of the treatments in some sort of nice package immediately for the patients, because, you know, especially say something like psychology, we see them in the clinic and then they're on another waiting list until the psychologist slot becomes available. And equally, you know, as we're all aware, local mental health services are also utterly under resourced. And so, you know, if there's a patient who we think might benefit from CAMHS, it can often be a year, year and a half before cams might, be able to see them.
So it's a really tricky balance. And the difficulty is that the evidence for the most effective way of delivering all of this is to do it in what we call an interdisciplinary way. So slightly different from multidisciplinary. What interdisciplinary means is that you deliver it all together, but you also deliver it by the same therapists. So you would have a psychologist, you would have a physiotherapist, you would have an occupational therapist, you would have a doctor, you would have a nurse, but they're all delivering it together and they all have the ability to interchange how they deliver it. So, you know, although, a physiotherapist might not deliver very intricate psychology, they know how to deliver the psychological principles, but they're also delivering that in a way that's aiding their physical therapy that's going on.
And so what this has led to around the world is different centres have started pain management, what we call pain management programs. And they're very common in adults and paediatrics, not so much, but there are centres certainly in America and Germany who are publishing quite a bit of data over the last few years and quite successful data about the efficacy, efficacy of this. And so. We haven't been able to do that in the UK. There is one centre in Bath who started up a long time ago who have a, who do it to a certain extent, but obviously that's just one centre and they can't see everybody. But most of the other pain management centres across the country just haven't been able to do this because of money, you know, it's…It probably saves money in the long run and the healthcare economics would suggest that, but trying to convince your trust to have a huge hike in the wage bill to pay for the staff that you need to run something like this is, is very difficult to do in the, in any climate, but especially in the current, current climate that we're in. But the feeling is that if you can do that, you will treat children faster. You will treat them more effectively and hopefully you will also give them a more sustainable outcome. Because the reality is that a young person who has chronic pain, you know, having pain every day, which is a horrible experience, but the impact of it goes far beyond that, you know, their, their life is, sort of stopped for most of them, you know, they're usually their mobility is limited. So they're not getting out and about, they're not doing things, they're not going to school, they're not socializing with their friends, they're becoming isolated, there’s…often it affects things like their mood, their anxiety, although it's usually a combination there going on. But everything about that child is sort of on hold and it's stopping them having their childhood. Which in some ways is worse than in adults. Because, you know, as an adult, you sort of grown up, but those years as a child, you don't get back. And, you know, one of the things about health care in children is that we try and think about that for the child, isn't it? To give them the best childhood that we possibly can, because it's such an important time of their lives in, many, many different ways.
And so hopefully by delivering things in a program like this, you know, we give them the treatment more effectively. We give it to them quicker. And they have a more sustainable outcome and so therefore that all those improving their quality of life that we're trying to do happens in a way that gives them more of their childhood back. And so that's the goal and that's why, you know, we are, we feel incredibly lucky to be able to start a program like this, but the benefits of it could be so huge.
SA: Well I really hope you all the very best because I think the ethos with which you're approaching everything is really commendable and I can imagine just the, the appreciation that families have for your service and your way of approaching things in such a holistic, biopsychosocial way.
And so if people wanted to refer to the pain service, then how would they go about doing that?
GW: Well, it's very straightforward. It does depend whether you work within the hospital, you don't really work outside of the hospital. If you work within the hospital, you can do it on Epic. And you just go into the orders bit and type in outpatient referral to pain service and please outpatient referral, because if you can do an inpatient referral to get your patient seen on the wards and then there's a, there's a form you fill out. And it comes through to us.
If you're from outside of the hospital, essentially, it's the same method that you get there by the website and the same form is on the website and we would ask you to fill that in and send it into us but we, we critically we need detail. If you don't provide us with detail, unfortunately, you may find your referral wings its way back because we won't be able to triage, but the detail that we need is very explicit from the form.
SA: And I'll make sure that website is linked down below. So let's round up with some quick five questions. So what would you like a general paediatrician to know about treating pain and about pain rehab?
GW: I think, as I said, the most important thing is that if you've got a young person in your clinic who has ongoing pain don't just think about the medical solution or just giving a tablet to that patient. Really try and understand what the drivers are for their pain using that biopsychosocial framework. And I know that's potentially difficult because, you know, as I've said, we're lucky we get an hour and a half with these patients. I know you people out there, your clinics are far more rapid turnover than that. But if you've really got a patient with those sorts of problems, that's, you need to understand that. Otherwise, it's not going to sort of move forward. And actually doing that and putting in place, you know, simple MDT type treatment locally for a lot of pain patients works and you wouldn't need a referral to a speciality service such as ours.
SA: And secondly, are there any useful resources that you would recommend?
GW: Yes they're the two best ones. There's two e learning suites. One on e-learning for health and also one on the Royal College of Paediatrics and Child Health e-learning suites. They're both free to access for healthcare professionals. The one of the Royal College of Paediatrics and Child Health, You don't have to be a member of that to access it. And they're both very good and they take you through different modules about acute and chronic pain and presentations of patients. And so that is a really good basic start. And hopefully would provide people in their own clinics with a bit of confidence to think about how treating these young people.
SA: Yeah. And I'll make sure everything's linked down below. And finally, just to wrap up, what are your three takeaway learning points?
GW: Gosh, that's difficult. Um, the first one is biopsychosocial formulation. It has to be, it underpins everything that we do. So, you know, please think about that whenever you come across a young person who's, who's experiencing pain.
The second one is, is maybe really, you know, just to think about the impact that the pain has on these young people, you know, it really is stopping their lives. And there is no delineation between physical pain and it's all in your head, psychological type pain. It's neither one or the other. It's a combination of the two and you have to think about it in that way to treat the child the best.
And three. I suppose, you know, in terms of what we want to see at GOS is, you know, in some ways, you need to do all the work with the child to rule out other treatable causes of the pain, which would necessitate not needing a pain service as such. But otherwise refer early, get the child to us, the quicker we see the children often the more impact and the quicker the impact we can make.
SA: Fantastic. Glyn, thank you so much for what has been a really interesting discussion about all aspects of paediatric pain.
GW: It's a pleasure. Thank you.
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