Ep 43: Fatigue in children, adolescents and young people

In this podcast, Kathryn Rigler, Rheumatology specialist physiotherapist, talks to Poppy Greenman, Paediatric occupational therapist, covering how to talk to children and young people about fatigue, measuring fatigue and strategies to overcome it, with practical tips from an expert in this area 

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Transcript

Kathryn Rigler   

Hello and thanks for joining us today on this BSR talking Rheumatology podcast. I'm Katheryn Rigler, Rheumatology Physiotherapist, and I'm currently sitting on the Digital Learning Board for the British Society for Rheumatology. I'm delighted to be joined today by Poppy Greenman, who is a paediatric occupational therapist specialising in rheumatology, working at the Bristol Royal Hospital for children. Today, we're going to explore the topic of managing fatigue in paediatric patients with rheumatology conditions with our main focus being on clinical experience and the practicalities of this. Hopefully during the discussion there'll be some tips for how to address and manage fatigue in the rheumatology clinic and also if you're one of the team referring into therapy services, some insight into how the therapy team helped young people to manage their fatigue in daily life and also importantly moving through into adulthood. So, Poppy, thank you for joining us. Would you first of all like to tell us a little bit about yourself and your role and maybe the team that you work within?

 Poppy Greenman 
 Hi, thanks for having me. Thanks for the opportunity. So that was a lovely summary, not too much more to add in terms of my role, I've worked in paediatrics for about 6 years as an OT for around 10 years now, I work with a really wonderfully holistic MDT, which I think is just such a bonus. You know how these things go? Yeah, they all seem to have a brilliant insight into fatigue and pain and that's kind of how this, how that those things impact our sort of young people with inflammatory conditions so it's quite regularly talked about in clinics and appointments when we see these young people together, I think primarily I would say most of our fatigue related referrals come my way as an OT. So I often see these young people and have a chat about fatigue in general, but they get lots of support from our clinical nurse, specialist physios, psychology, our doctors as it definitely feels like a bigger picture approach to manage within the condition as a whole so it is very much an MDT approach.
Kathryn Rigler   2:34
 Which, as you say, It's a great team to work with in that if you've got all that support in it because I know that, yeah, in some rheumatology services there perhaps won't be psychology support or even occupational therapy support as well or physio support depending on where people work but as you say for managing fatigue then it's great to have that MDC support isn't it.
Poppy Greenman   2:37
 Yeah, we're very lucky, but I think hopefully today, yeah, if any of these tidbits work, if they haven't got OT psychology or anything, then there might be some takeaway bits.
Kathryn Rigler   3:01
 Definitely. So in your in your experience, how does fatigue tend to present in the young people with inflammatory arthritis?
Poppy Greenman   3:10
 We tend to see just, I think a lot of them come to us with their initial challenges being pain or stiffness, but that can then be exasperated. I think if they're going through an episode of a flare and then on the back of that, you might just see some other symptoms worsening, like reduced appetite, disturbed sleep patterns is always a bit of a red flag.
Kathryn Rigler   3:36
 Yeah.
Poppy Greenman   3:38
 Increased irritability, so sort of lots of chat about how things might be a bit more challenging at home after school.
Kathryn Rigler   3:44
 Yeah.
Poppy Greenman   3:46
 Difficulty concentrating or focusing at school, so maybe just a few reports from teachers that they're not as focused or doing as well as they maybe usually do.
 And then also just some withdrawal from activities or hobbies that they previously really, really enjoyed, and that those sorts of things can obviously be seen for a variety of reasons and low mood could be a big factor there. But we know those things can often come hand in hand and fatigue can just be a bit of a byproduct.
Kathryn Rigler   4:17
 And do they tend to describe it to you differently to perhaps the terms that we might use as health professionals?
Poppy Greenman   4:25
 Yeah, I think like anything young people have their own language, right? And I think a big part of our role is kind of picking apart ways that they describe whether that's symptoms or feelings, and depending on the age, depends on what kind of language we may be using. So we often have to read between the lines and have maybe more leading questions or digging around sort of phrases they might use like ‘Oh no, I can't be bothered’ Or, you know, ‘I'm just always tired’
 You know, ‘I nap when I get home from school everyday. I'm just exhausted.’
 Or, you know, just things, little phrases they may just talk about how they are up a lot at night times or
Kathryn Rigler   5:11
 Right.
Poppy Greenman   5:12
  just maybe increased difficulties with their peers, so if they start chatting about social dynamics, we kind of ask a few more questions about that because that is really relevant.
Kathryn Rigler   5:23
 And signpost due to there being a problem.
Poppy Greenman   5:25
 Yeah. And it's just picking up on those maybe social or things that are less obvious than you know when an adult's having these conversations, they may be articulating it in a different way, or just have that background understanding about fatigue and what their norm is. These young people might have been living with this for quite a while, but some of these.
Kathryn Rigler   5:45
 Yeah.
Poppy Greenman   5:50
 yeah.
Kathryn Rigler   5:51
 Just maybe just kind of assume that that's part of them rather than it's part of the condition?
Poppy Greenman   5:56
 Exactly. And it isn't something that should just be accepted as maybe part of your condition and we can do things to maybe help improve that for them and their quality of life. So I think, yeah, conversations tend to happen a little bit more with with our young people and chat general chats about their day-to-day life.
Kathryn Rigler   6:16
 Yeah. And presumably that that conversation improves that is that as you build that relationship with them as well?
Poppy Greenman   6:23
 Yeah, definitely. And I think as with any of our long term conditions, we've got the luxury of maybe building up relationships with our patients and seeing them a bit more than other services would. But I've definitely found that as a key role with all of our, you know, MDT really is building up rapport and relationships with them to kind of help get to know them a little bit better and then maybe help knock down some of those guards or, you know, barriers that they might already put up.
Kathryn Rigler   6:51
 Yeah.
Poppy Greenman   6:51
 They've often maybe had they could have some preconceived notions of medical professionals or, you know, be quite anxious in that environment. So just and it is what I think we do well, particularly as therapists, but we try to build up those relationships in order to get the best out of them.
Kathryn Rigler   7:00
 Yeah.
Poppy Greenman   7:12
 So that definitely helps with our young people around just getting on their level, getting to know them and what their language is, how they describe things.
Kathryn Rigler   7:19
 Yeah. And I guess you've already alluded to this that as therapists, we often do have the privilege and the benefit of having a little bit more time with patients. So if we, if we think about being in a rheumatology clinic where perhaps time is often short, is there any particular questions that you might ask or that you can recommend that people ask to see fatigue is an issue for the patient?
Poppy Greenman   7:27
 Yeah, it's a good question. I think I have some sort of key questions that I ask around, you know, what are their interests, what you know helps get them up in the morning or sort of age appropriate conversations around what they do day-to-day, even just something as simple as what their normal day looks like, so just run me through a typical school day, perhaps because then you might find out oh, they're, you know, they're snoozing their alarm 20 times and just quickly they're not feeling well rested when they first wake up, as is norm for most adolescents, but you might see a few more sort of red flags. Like I say, the napping when they first get home from school, you know, and I'm talking you're two to three hour naps some of these kids are having because they're crashing after school. So if you ask a probing question around what's your day-to-day like, you know describe a normal day for you, you might just get a bit more info than you would if you were asking about, you know, just.
Kathryn Rigler   8:16
 Yeah.
 
 
Poppy Greenman   8:40
 Your more mainstream questions around joint pain or maybe quite a streamlined approach I find if there there's more scope for conversation and they're willing to chat, sometimes their parents are asking, answering on their behalf and that is also really, really helpful.
 You just might find a bit more about how school's going and just a bit more of an insight, it can just be that conversation can be a minute or two minutes long depending on how much they're willing to talk to you about.
Kathryn Rigler   9:03
 Obviously sleep patterns can be quite helpful to establish if you ask them about their sleep as well?
Poppy Greenman   9:12
 Yeah, sleep's another really key conversation starter.
 And again, can often indicate that some young people are just accepting that their norm is waking up two or three times in the night or not falling asleep until maybe 2:00 in the morning, or just what their normal routine is before bed. And it can uncover maybe some maybe poor sleep hygeine. Yeah, and that can then be a really  easy win when helping manage some fatigue symptoms.
 So that optimising their pain obviously is another thing that can really help with fatigue management, I think. And that is something that's routinely discussed in clinic appointments. But yeah, just another.
Kathryn Rigler   10:08
 Yeah.
Poppy Greenman   10:10
 Sort of pointer.
Kathryn Rigler   10:11

Might be a way that you might link up with the rheumatology clinic, so they're talking to you about how pains are real issue you might link up with the consultants in rheumatology clinic again to have that discussion, yeah.

 Poppy Greenman   10:13
 Yeah.
 Absolutely working together and collaborating around you know if there are some key challenges there with pain management, how can we support with that? But yeah, sleep and sleep hygiene is often a big issue, especially with our teenagers.
 Just in terms of like screen time or forgetting that good evening routine can really help you wind down and
Kathryn Rigler   10:48
 Yeah.
Poppy Greenman   10:49
 it's easier said than done.
Kathryn Rigler   10:49
 Optimising sleep in terms of managing fatigues obviously really key as well, isn't it? So, OK, so that's great. So if I mean, I imagine this comes more once the young person has been referred into your service, but are there any kind of key patient reports outcome measures that you tend to use in a clinical environment to help you measure and monitor fatigue in your patients and do you tend to use them or find them helpful at all?
Poppy Greenman   11:17
 Yeah, there's definitely a role as is with any sort of assessments that we're using some, yeah, there are good key takeaways from maybe the general like patient reported outcome measures around fatigue. So I mean for example the Chalder Fatigue scale, I think that's like a 14 point scale, there is also we use one here, the PROMIS fatigue, it's a short form. I think that's around 14 questions and it can give you like a scale of as to how that young person is feeling on that day.
Kathryn Rigler   11:51
 Yeah.
Poppy Greenman   11:52
 It's quite current. You know, it doesn't necessarily look at retrospective reviews of how their fatigue has been, it's looking at not at all to very much and you know if you want to sort of quantify that there is that individual's feelings around fatigue, then that can be quite helpful maybe for the young person or the family in terms of measuring, obviously intervention and how it can be good motivator.
 Yeah, it can just be a good summary, we find sometimes it's not always that helpful to necessarily focus on.Kathryn Rigler   12:33
 We've got a scale.
 Yeah.
Poppy Greenman   12:32
 Maybe what's challenging, yeah in a scale kind of aspect, so a lot of measuring that we use is maybe a little bit more functional. So how are they participating in a school day? Are they attending full time? you know and then say for example, if they're attending part time, you can use that as quite a good measure of how they're managing day-to-day? What are they able to do for themselves versus, you know, support they're getting from other people, washing and dressing independently versus, you know, getting some support from family members, carers to, you know, do XYZ for them in the mornings and are they behind, for example, in school work, how what are school reporting? Those are just sort of quick examples of how we could measure fatigue and then you're looking at that individual's quality of life. So you could look at maybe a more general quality of life measure, which I know lots of people in clinic are using routinely now that could just be used as a good general measure for how our young people are feeling, because naturally this can have quite a big effect on them and their quality of life.
Kathryn Rigler   13:31
 Yeah.
 Mm hmm.
Poppy Greenman   13:43
 That's often something that we're using.
Kathryn Rigler   13:43
 
 Yeah. So I mean, as you've kind of said it, it can have a massive impact on day-to-day life for patients living with inflammatory arthritis and with fatigue alongside that so is there any particularly common ways that fatigue does tend to impact on day-to-day life for young people? Because I think, you know, I think often when the term fatigue is used, a lot of people think about the lack of energy to do with physical things but in my experience and working with adults mainly but.
Poppy Greenman   14:02
 Yeah.
 Yeah.
Kathryn Rigler   14:12
 Fatigue obviously impacts on lots of different areas and the different types of energy that people have to deal with everyday life.
Poppy Greenman   14:12
 Yeah.
 This is what we're seeing a lot of. Yeah, I think I so, I mean the key components that we're looking at, your physical, emotional, cognitive and environmental factors so
Kathryn Rigler   14:30
 Right, right.
Poppy Greenman   14:32
 I mean, I go back to school because I think this is quite a good example for our young people and maybe just a different perspective maybe if we're talking to adult therapists, for example, but the physical environment, there may be walking to and from school there if they're in secondary school, it can be quite a big campus. They're moving around classes and for example parameter secondary would be a big jump, a big transition for our young people, so that can be a bit of a challenge.
Kathryn Rigler   14:55
 Yeah.
Poppy Greenman   14:57
 The emotional side of things, you know, you've got a lot of social dynamics for our young people and they change as they evolve and they grow up those could be quite draining and challenging. They've got the and there obviously can be things going on at home, cognitively, you've, you know so many drains when we're in that environment. In terms of the demands of school work and their, you know, their learning, they're concentrating, they're filtering out sort of excess sounds. They're constantly working hard in a school environment and then that environmentally you've got bright lights, it's loud, it's busy. All of these things are zapping energy from our young people so it's quite a nice way of.
Kathryn Rigler   15:31
 Yeah.
Poppy Greenman   15:43
 Kind of getting an overall view of how that young person is coping by asking about their day-to-day, but also then kind of describing it in that way can be quite validating for them because they're like, oh, I've just been to school or I've just, you know, they hear that a lot, you know, I'm not doing too much, but sometimes it's really important to, yeah, verify how draining those sorts of things can be. And that's not to say that that's always going to be the case but for a period of time or if that person is struggling, it's important to kind of pick apart how they're coping with certain things and some people filter out noises and you know, bright lights easier than others so it can, you know, just being fatigued in general can then just take its toll on their social life, their relationships. If they're crashing when they get home from school, they may be missing social dynamics or clubs that they might be interested in joining and then that ability to engage with their peers or even with their family. They might be sleeping through dinner, they’re comparing themselves to their peers, they're comparing themselves to other people their age.
Kathryn Rigler   16:51
 Yeah.
 So there's that constant, that constant kind of self analysis going on, so as well as kind of having to battle with having a long term condition and potentially battling through pain if they're in a flare. It's also thinking about they’re having to manage all of that within an environment that is actually quite challenging to be in as well.
Poppy Greenman   16:53
 Yeah. And I think it's the things I'm talking about are kind of coming from my young people so the people that I'm seeing and they're already dealing with change or being slightly different if maybe they're, you know, they have a new diagnosis or things can be challenging during a time of flare, then on top of that managing these sort of fatigue symptoms can be quite isolating and I think that's maybe when we go back to the asking the questions in clinic, you can pick apart a little bit more about how their day-to-day life is and if you see some of those more challenging dynamics, can we think about a referral to psychology, just support them and bolster them that will have a knock on effect on how their fatigue is in general and you know all of these things have an effect on each other rather than just labelling it as fatigue. Are there other things that they're struggling with that we can support them with that they will then enable them to do and engage in other activities that they maybe feel aren't manageable at the moment.
Kathryn Rigler   18:13
 Yeah.
 OK. So in terms of, you know, obviously we kind of find out about their fatigue and how it impacts on them. Is there any like, what techniques do you tend to use for patients to help them then manage their fatigue? I guess you know, in a lot of what we hear is around the four p’s so the problem solving, planning, prioritising and pacing but I guess like actually trying to engage young people around those terms and whether they understand those terms or putting it into context obviously might be very different. So what would the techniques be that you use generally?
Poppy Greenman   18:45
  I think the four p’s generally can underpin any of the work that you do and often does with the work that we do with young people but again, we have to be quite flexible with how we engage, you know how to get the best out of them and so I think a big part of what we do is building up a relationship with the young people and their family or who their core people are close to them.
Kathryn Rigler   19:08
 Mm hmm.
Poppy Greenman   19:09
 So yeah, relationship building, getting to know them, asking those initial questions and it might look like we're doing that collaboratively to begin with so I might join a session with physio because if they already know them or they're in that environment, it I can observe and casually ask some questions about how they're doing day-to-day rather than having quite an intense conversation to begin with. So maybe being a bit flexible around those initial meetings that we have or you know a joint session with a CNS or within a clinic environment just showing my face showing who I am and building up that trust and rapport is quite key at the beginning stages.
Kathryn Rigler   19:43
 Mm hmm.
Poppy Greenman   19:44
 We work quite closely with families, schools, medical, you know, the psychology team to make sure that we're trying to minimise too many appointments or optimising our engagement, really
Kathryn Rigler   20:05
 Yeah.
Poppy Greenman   20:05
 And make sure that we're working collaboratively as part of our assessment and what we're how we establish what their day-to-day life is like we sometimes use activity diaries for people to just go away, we provide a bit of education initially around fatigue management because usually they've come to us with some challenges that they're describing in clinic for example, so we use like a colour coding system around.
Kathryn Rigler   20:16
 Yep.
Poppy Greenman   20:30
 Red, amber and green activities and help, we give them like two weeks to go away and look at what they're doing day-to-day and try and describe what may be red activities are, you know in their day-to-day life and that can look at physical high energy activities like walking to and from school or being in a school environment, running sport, P/E depending on where their level is at and then,
 
 
Kathryn Rigler   21:00
 So. So that would be, that would be a red activity, for example, yeah.
Poppy Greenman   21:02
 Yeah, you're looking at maybe some of those red activities and this is just to help them break down maybe how much they're doing day-to-day, if this is maybe some patient that's having quite a lot of difficulties with getting through a school day or, you know, on the more severe end.
Kathryn Rigler   21:17
 Yeah, and it gives them that visual aid, doesn't it? To look at something across a week maybe.
Poppy Greenman   21:19
 Yeah, exactly. Yeah. And if it helps us then establish if they're napping, you know, for example, in the day or, you know when what rest they're getting, some of our young people aren't resting, so you might have these high achievers that are doing, you know, they're waking up early, they're getting their way into school themselves, they're doing a full school day, they're then doing maybe a club a day after school and things at the weekends, and that's fantastic, if you're coping and things are going really well.
Kathryn Rigler   21:47
 Yeah.
Poppy Greenman   21:48
 But it helps us then maybe reframe activity levels for our young people and their families and look at maybe are there days when you're doing two things after school, but some days you're not, you're crashing and not doing anything and that helps us maybe highlight a boom bust cycle, so sometimes that can be quite helpful.
Kathryn Rigler   22:04
 Yeah.
 And especially I imagine if they're really working hard through the school week and then they're crashing at the weekends and then they sometimes miss out on that other social activities or family activities that might be important to them as well.
Poppy Greenman   22:12
 Yeah.
 Yeah. So just getting to know what they value and what they want to prioritise, so yeah, part of your questions could be around what is it that you enjoy, what you know makes you happy, what things do you think you know you would really want to prioritise if you're finding things difficult at the moment and it might be that schools are think they really want to focus on, they've got their GCSEs and they want to channel their energy into that or they're like, you know, they they really love dance and that brings them joy, so I think just looking at the individual, prioritising for them and balancing out the routine and focusing what's important for them, with the aim to just sort of generally increase overall activity levels, but it might mean that they have to scale back slightly in some areas too, because we're looking at a little and often approach. So rather than, you know, exasperating that boom and bust cycle, can we distribute activities across the week or month depending on how you're looking at things.
Kathryn Rigler   23:08
 Yeah.
 Yeah.
Poppy Greenman   23:20
 And that can work really well if you're working collaboratively with schools, for example, or families.
Kathryn Rigler   23:26
 Yeah.
Poppy Greenman   23:27
 And mostly, you know, schools I've worked with have been really on board and supportive because the end goal is to ensure that young person can achieve what they want to achieve and get through the school year or term and sometimes scaling back slightly or starting later, finishing slightly earlier enables them to be more successful and you know, we do often see that because you have that increased self efficacy, better self esteem because they're able to accomplish things within a shorter window of time.
 And that can be just for, you know, a shorter period and it can be reviewed and then you just see how things are going but that is often approach, we do use, we work really collaboratively with school and it doesn't have to be around even scaling back days. It can be way more simple and looking at some just scheduling and planning, you know, do they have to be in that block, you know, do they have to walk that far? Do they have to do every physical activity that they're doing, if that's something that they don't want to prioritise and we do, I work really closely with physios around trying to encourage movement and exercise because we know how important that is for our, you know, our young people and their joints and their general condition and health. So we do try and build up positive experiences with exercise and movement and a lot of the time we want to increase their activity levels rather than decrease them, so that can also be an approach that we use if there's maybe a young person that's gone really into themselves and avoiding activity, it might be that we
Kathryn Rigler   25:03
 Yeah.
Poppy Greenman   25:05
 work with them to slowly increase activity levels in a way that feels comfortable and managing manageable for them.
Kathryn Rigler   25:13
 Yeah, trying to promote that kind of positive relationship with movement that we need for life, for general fitness and well-being in managing the condition as well, yeah.
Poppy Greenman   25:18
 Yeah, exactly.
 Yeah. So that is really important for us and we can work with our physios, work really closely with PE teachers, providing education around the condition and that there might be times of flare when you know physical activity like that may be more challenging and can we adapt things for them rather than just go, OK, you can sit on the side.
Kathryn Rigler   25:35
 Yeah.
 Yeah.
Poppy Greenman   25:41
 So I think what the main overall you know goal for us is collaborative working conversations with school and families.
Kathryn Rigler   25:50
 Yeah.
Poppy Greenman   25:52
 And I think we do talk about things like nutritional support for some of our young people. I know adolescents sometimes that can fall off the wayside a little bit, how are we fueling our bodies? And by no means are we experts in that necessarily as an OT or a physio, but we can have just introduced that conversation and it's sometimes highlights a few red flags around or I skip breakfast or I'm, you know, having coffees and some of my kids really surprised me with maybe energy drinks
Kathryn Rigler   26:03
 Yeah.
 Yeah. Yeah. Energy drinks, yeah.
Poppy Greenman   26:23
 how much caffeine they're taking on, so it could be as simple as a little bit of education around what your intake is and are you keeping hydrated and are you making sure that you're supplementing your body in a way that is going to get the best out of it?
Kathryn Rigler   26:36
 Yeah.
Poppy Greenman   26:38
 Sometimes we offered some analogies that can be quite helpful in helping the children and young people or the families understand fatigue management. So we've got things like a marbles jar, this is quite commonplace but, you know, you start the day with a full jar of marbles and as you do different activities depending on the individual you do lose marbles and we can kind of evaluate that with that young person, but that might take four and then eventually you're kind of chipping away at that and there are activities that you can do that can replenish your jar, so what is restful activity for you, your young people and that doesn't have to be sleep, that can just be relaxing, listen to some music winding down.
Kathryn Rigler   27:20
 A kind of a change of energy type use so something that's really cognitive and then switching to something different, yeah.
Poppy Greenman   27:25
 Totally.
 Yeah, absolutely replenishing teenagers may be a phone battery, they're looking at what fills your cup versus emptying your cup, so just different analogies like that can often help.
Kathryn Rigler   27:44
 That's the ways to help them to think about how they're managing their energy levels during the day as well.
Poppy Greenman   27:49
 Absolutely.
Kathryn Rigler   27:50
 OK. So and you've obviously talked about how important it is to work with the young person's family and the local community, whether that's with their schools or after school clubs and that kind of thing and we kind of talked to this way about with, you know any inflammatory conditions, there are times of flare which can be more difficult to manage so I guess having if you've already got some kind of structures in place to know what to do in times of flaring, maybe how to scale back certain things or add other things in that can be a really good way of planning for what might happen as well.
Poppy Greenman   28:22
 Absolutely. Yeah. Just, you know, preparing for those worst days and anything in between is a real win. I think sometimes it can be. I think a big challenge our young people face is the fluctuating nature of these conditions and the inflammatory conditions and some days you're deemed as looking fine or, you know, running around and you might be having a great day and other days pain is really challenging or you've had, you know, you're in the midst of a flare.
Kathryn Rigler   28:27
 Yeah.
 Yeah.
Poppy Greenman   28:51
 And that can be really intimidating. Maybe sometimes in a school environment where teachers don't quite understand, your peers don’t quite understand, and you can be quite new to having the condition yourself. How do you articulate what you're going through when you're feeling already really self-conscious or quite anxious and nervous? And I find a big part of our role as advocating for our young people.
Kathryn Rigler   29:18
 So you know, you talked about advocating for the young person and then obviously collaborating with the schools. And is there other the places you can signpost people to get help with that?
Poppy Greenman   29:29
 Absolutely, yeah. We work really closely with some fantastic charities, so
 Versus Arthritis and CCAA locally, JIA and NRAS, so CCAA around us, they run some brilliant camps and peer led work, you know just if people go and look them up, they're all over the country and I think most of our rheumatology centres with physios and OTs are linked up, some people have a versus arthritis rep
Kathryn Rigler   29:46
 OK.
Poppy Greenman   30:02
 And a worker that represents their team and can work with their young people. They do amazing work, you know, in terms of linking them up with peers, helping them understand what they're going through, people that just get it way better than we ever could.
Kathryn Rigler   30:18
 Because they talk to somebody that's been through it, yeah.
Poppy Greenman   30:20
 Totally. What have you experienced? How has that helped you? You know, what did you find annoying about the doctors and everyone? You know, people asking you questions all the time. And they can offer things that we never could so linking up young people with them has been invaluable and they some of them offer really cool initiatives like CCAA, have badges, they can collect in terms of you know, things that that can just help.
Kathryn Rigler   30:26
 Yeah, yeah.
Poppy Greenman   30:46
 Maybe improve self esteem and motivation and things. And some of our young people have gone on to then speak in school about their condition or what things they find difficult and in assemblies, or even just within their tutor groups, for example and just the power that they can then harness around taking back control and saying this is me, this is what I'm going through day-to-day and they've had some really positive outcomes with that, that doesn't always come easy to people and you know, might not be as straightforward as that, absolutely.
Kathryn Rigler   31:16
 Natural thing for them to do, yeah.
Poppy Greenman   31:18
 That in some cases that has been really beneficial.
Kathryn Rigler   31:22
 So you're saying obviously one of the main things that you do is try and help young people advocate for themselves.
Poppy Greenman   31:27
 That would be the end goal.
Kathryn Rigler   31:28
 And try as you say, try and empower them to be able to deal with this long term condition going forward. So is there any other things that are really important that we should be considering as they do transition and move towards adulthood?
Poppy Greenman   31:41
 Yeah, I think that empowering and advocating for themselves. I think that is the biggest tool that we can give our young people, this, rather than doing things to them, helping them figure out who they are, what their managing day-to-day and and what their toolbox is so that's kind of how we look at these strategies and like anything we do in therapy it's a toolbox for them to utilise you know as they get older.
Kathryn Rigler   32:00
 Yeah.
 Mm hmm.
Poppy Greenman   32:10
 And that can evolve. We know the jump from children's healthcare to adults can be really challenging and just daunting. And you know, differing in lots of different ways.
 But I think we know I know, especially on clinical nurse specialists and our doctors run fantastic transition clinics and some areas that therapies are really heavily involved in that as well starting that from as young as 14, there's like ready, steady go fantastic paperwork that's developed around that as well and I think
Kathryn Rigler   32:36
 Yeah.
Poppy Greenman   32:42
 If we can make sure that we're on top of that with our young people and really implementing good transition, there is so much evidence to say that if they're prepared and empowered and have their voice and they were encouraged from a younger age to speak up, then hopefully that transition isn't as daunting or challenging when it comes to it.
Kathryn Rigler   32:47
 And I guess for a lot of people listening hopefully to the podcast, there'll be a lot of people who work mainly in adult clinics, and we might obviously see people you know, much later in life as well, who have been potentially, you know, diagnosed when they were very young and been living with their condition for a long, long time. So is there any particular tips that you can give us for what we should consider in, in patients that we might see in adult clinics but who have been living with their fatigue for a long time?
Poppy Greenman   33:11
 Of course, yeah. Sure. I mean they are the expert patient in themselves, they know better than anyone, all of the things they've tried, all of the things that they've you know, managed or have been effective, not effective in managing their long term condition. So I think just get curious, ask them what sort of things have worked well in the past.
Kathryn Rigler   33:35
 Mm hmm.
Poppy Greenman   33:54
 They probably have tried lots of strategies over the over the years. And chatted to lots of different people.
Kathryn Rigler   34:00
 Yeah.
Poppy Greenman   34:01
 Sometimes in the depths of a flare, the depths of some really more challenging times, they just might need that helping hand to help bring them back up to the surface and remind them that they have, maybe sometimes they do have the tools within them to get through the day and get through that period but it can be quite hard to see that when you're in the depths of it again and sometimes you need new strategies but if you try and chat and build up that relationship, that can be easier.
Kathryn Rigler   34:20
 Yeah bring those strategies maybe that they've used to the forefront as well. Yeah. OK, great. Well, thanks so much, Poppy, that's been a really interesting insight into kind of managing fatigue in the younger people as well and hopefully it's given everybody a greater understanding of how it might manifest as well as particularly the importance of asking questions and I think just acknowledging fatigue as well, and especially with young people so that we don't just assume that if they don't mention it being a problem, that it that it perhaps isn't because it might manifest in different ways and impact them in different ways.
Poppy Greenman   
 Exactly. Exactly.
 Hmm.
Kathryn Rigler   
 And obviously, you've talked about how it really impacts on their their day-to-day life and they're dealing with already such a lot at that age in terms of relationships and kind of exams and getting through school and all of that kind of thing. But it's really important to help them see how they can manage it themselves and really give them the tools, as you say, to, to try and help manage fatigue moving forwards as well.
 So thank you very much, Poppy again, and thanks to everybody who's joined us listening to this Talking Rheumatology Spotlight Podcast on fatigue, we really hope it's provided you some useful insights into managing fatigue in younger people and then again moving forwards into adulthood. Many thanks.
Poppy Greenman   
 Thank you.