00:30:22
Transcription:
[00:00:04] Dr. Stewart Rust: Hello. I hope everyone's here. You can't say hello back, so I don't know whether you can hear me or not, but fingers crossed, god loves a try. So this is a my first live stream to to Europe, so this is exciting. I feel like on the Eurovision Song Contest. So obviously you guys have been through some of these before, so you work, you know the score, you know how it works and I'm going to advance the slides myself. So obviously you know some housekeeping. Just, oh, it's not working. Why is it not working? Great, some housekeeping. To start, this is me. I'm Stuart Rust, a clinical paediatric neuropsychologist at the Royal Manchester Children's Hospital here in united Kingdom, and I'm going to talk to you about some things today. Oh, come on, sorry, just getting to grips with things, there we go. So just some reminders about some housekeeping rules. Advise not to take screenshots, please. It's my intellectual property. Please don't produce any, reproduce any slides or content without our permission and my permission. Hopefully I'll get it done within 30 minutes, fingers crossed, although I've no idea of the timings. You can submit questions in the questions panel and we'll pick those up at the end, and questions can only be submitted by this, this facility. Well, I'll try and work through all the questions as much as I can and, within the realms of my knowledge, the best of my ability. Fingers crossed that it's all okay and apparently it's available online as well at this address. I didn't realize it's being recorded. I hate that, never mind or crack on. So I'm talking to you as a so what. You know I'm a neuropsychologist. Lots of you probably have seen me around in the MPS circuit and I worked in metabolic conditions for 15, 16 years now and I've been a working neuropsychology for 20 years, so quite a long time. As I'm talking about psychological care generally for children and families with MPS, can disorders in this current slightly aware and unusual and rare situation that we're all living in at the moment, which I believe is probably a lot better on the continent now.
[00:02:14] Dr. Stewart Rust: So I'm hopefully going to provide promote a bit of awareness about the psychological challenge for families and young people with any chronic condition. Just remind people about how people adjust, what we do, how we adapt to things and also you're all very skilled clinicians, you all know the school, you know, know what you're doing, but just remind people about how we cope, what kind of support is practical and useful in distressing and upsetting times of going through at the moment. So just my disclosures. As usual, I've had travel grants and bursaries and some speaker fees from Takeda, Vitalflow and Sanofi over the years and thank you very much, much appreciated and paid for my kitchen. So I'm talking about chronic illness and its psychological effects in general. So actually having any chronic condition- metabolic condition, whatever- can really impact people's lives, and we know that children, young people, with any chronic condition are twice as likely to have psychological difficulties. But we know their mums in particular I like to have much poorer mental health. Their siblings have high levels of mental health difficulties and in fact, Christine Eiser- she talks about ordinary people in exceptional circumstances- that when you have a chronic, life- limiting or life- altering condition, it will of course, impact in your psychological wellness. And we know more recently that actually having a child in the family or an individual in a family, the chronic condition can almost double the risk of divorce in that family as well. So it's pretty wide- ranging the impact of chronic conditions on families and on people's psychological wellness generally. Now, obviously we're in a funny old situation and I'm just gonna move this box over so I can see things better. Brilliant we. So we're in a sort of a crisis situation right now and we expect it to impact ourselves, our families, our communities and their wide society. Of course it is doing. There have been some, some big losses, some upsetting levels of people dying, largely in the UK, but also many parts of Europe as well, and and even if you're not directly affected yet, you might feel that it is affected or near to your near to your family. But the reassuring thing is, from lots of natural disaster studies is that most people can have a perfectly normal recovery, that some people might need early support intervention, but lots and lots of people do, can cope, get through this, come out the other side being okay and again, some level of distress, anxiety and upset is normal and, like Christine Eiser's quote: we're regular people in a slightly abnormal situation. We're dealing with regular events in it in a human way and sometimes we can get carried away and over anxious about the impact on people. Actually, people are really rather amazing and if we learn nothing in the metabolic community, we should learn that the people are amazing and resourceful and really rather talented. No, I'm gonna click on this bit again and again. Gone too far. There we go. So we know that how people depend, how people's responses are determined, they're about their resources and how they perceive the threat. So what is the danger, how big it is, how personal it feels to them, how they've coped with distress previously, how other bad events have happened in the past, and the amount of support. Again I've talked about this in nearly all talks I ever give. Social support, psychological support, the availability of people and groups and families around you is really important. Lots of research time and again highlights the importance of support from others, social and psychological support to keep us going. Our general physical health resources, we know certainly in the UK now from this understanding the disease certain groups of people are more at risk and potentially people with metabolic conditions, MPS conditions, are going to be at much higher risk factors. So that's going to obviously impact on responses. And again your family, how robust your family is, what your personal resources are, and cultural backgrounds and traditions. And of course finally age as well, children perhaps might react quite differently to adults. But here's the take- home message really. Everybody has strengths, everybody can cope with surprising amounts of things much more than they would have thought about, and some individuals are maybe more vulnerable than others. And we have to wonder, well who's going to be the most vulnerable people, what's the best support we can give them, what should we do? And we talked about, I don't know if you guys are familiar with this, this is from Elizabeth Kubler- Ross and her work was originally on grief and grieving. But actually this model is really useful for adjusting to a diagnosis of metabolic condition, to adjusting to a pandemic, whatever. That we all go through this kind of loose model. They initially deny, it won't apply to me, it doesn't apply to me, you know, it's other people, it's only Italians, it's only whatever. So we all kind of pretend to ourselves first on. Anger stage, why isn't someone doing anything about it? What can we do to get stressed about it? Depression stage, where we feel hopeless and a bit you know, lackluster and listless. And then that kind of bargaining and acceptance stage, where we come through it and we work out how to plan life and manage the new situation and keep going and find a way of continuing our way of being ourselves really. And you know, at different stages, different kinds of interventions are impossible. So the very beginning, people need information, they need to be talked to regularly. And when they're very low, they might need lots of emotional support. And at the end, as they're kind of reorganizing and redefining how they're going to work within this situation, people might need some guidance and direction about how to optimize how they're getting on in their life. So, but the rule, again the message is, people are really amazing and the people can adjust to all sorts of things. And we learned that from after wars, after an Ebola crisis in Africa, that actually people adapt very quickly, people can be much more flexible mentally than we give them credit for.
[00:08:31] Dr. Stewart Rust: And often the people you worry about the most might surprise you as being the most robust and resilient. In the early stages, again as a psychologist, I'm not one of these people who thinks everyone needs to see a psychologist and you need therapy for everything all the time. And in the early stages of adjusting to new life experiences and orders in this situation, people don't necessarily need lots of therapy, they don't need to come and see a psychologist to talk about how they are all the time. But what they might need in the early stages is really practical things. And in the UK it's called Psychological First Aid and it's about a humane, supportive response to a fellow person who might be suffering and who might be struggling. So it's not about therapy, it's about being humane and recognizing the humanity in each of us. It's about being practical, not intruding, not forcing people to talk about things, about listening if people want to talk and being there and understanding. And you know, and not trying to understand where they're coming from but recognizing you can't understand exactly what they're feeling and thinking and experiencing. Comforting people. Sometimes I think the most important interventions I do are just about being there and being present from people, for people. And also really about protecting people from further harm. So about stopping people from doing things that are going to cause themselves more damage or distress in the longer term. And it's not only for psychologists, it's not only, it's not professional counselling, it's not debriefing, it's not about detailed discussion of events, but it's about being available, listening to people's stories, not pressuring them, and validating and normalising people's reactions. It is normal to be upset and distressed in a situation like this, if you perceive yourself at risk. It is normal to be sad when scary, frightening things happen. There are normal reactions, normal human responses to a scary situation where things are rather unpredictable, and people hate, and we know nothing about life, we know that people hate unpredictability. Moving on. And so when you are going to meet people, when people are in crisis, or when people turn up in your clinics, or distressed or upset, what we have to do is help people recognise their resources, recognise what they've got around them, and try and minimise the effects of their stress and distress. We want to validate how they're coming from. It's normal to be upset, it's normal to be just anxious and worried, and you're okay to have that reaction. And try, where possible, to connect them to things in their life, to restore their function, to keep going in some way, in a healthy way. And there might be some people who you recognise whose distress responses or stress responses are over and above typical processes, and might benefit from additional support and care from the mental health system. But here's the things we really know that make people feel better and do the best after a very stressful situation. So about being safe, being connected, being calm, and having hope. Having hope is a really understated and important factor. Having hope for the future. Again, I said it before, I say it again, social support, social support, social support. It's kind of why I'm kind of frustrated about how we've not got schools better in this country, that we know that children and young people benefit largely from going to school. In Europe, whether children are managing school with social distancing or managing school in a safe way, we know it's really supportive and normalising for children and young people, and gives them connection and emotional support from people around them. We know about staff, again, it's about social support from friends and colleagues. And peer support as well is really important as well. And that's what helps people recover the most. So again, you know, the driver is everyone needs therapy, everyone should see a psychologist, it's really terrible, it's so awful, but that's not necessarily true. Everyone wants to see a psychologist, I don't know why, we're lovely, but everyone wants to and not everyone will benefit from that. So you can't force people. It's about making services available. We're here if you need us. But when you're just being a pediatrician or a doctor, again, it's about knowing what you can manage, what you can't manage, what can you contain and when can you refer around and who's there around to refer on towards. Always, always, always, you're all medical professionals, always, always, always having the back of your mind about safeguarding and risk. You know, is this person at significant risk of harm to themselves or others, and always having your safeguarding hat on. Of course, you've got that all the time anyway. And the when's the right time. Some people might require support when things are more settled, when they're a more stable phase, some people might require support right now. And it's about working out what's right for this person and coming to an agreement with them. And, you know, in the UK, lots of things have gone online. We're doing lectures like this online. We're doing therapy online. We're doing things through new platforms we've never done before, which makes it available more widely and remotely to a large number of people, which feels kind of positive, perhaps, and perhaps gives us lots of options for the future as well. Again, I feel like I'm teaching my granny to suck eggs here, that's British expression, about being calm and showing understanding. I would really hope that as doctors and mental health professionals and nurses who work in the MPS field, you are really famous for being calm and showing understanding because you're already used to communicating complex and sometimes distressing information. So actually, you can help people, you know, challenge the idea. Oh, it's something I did wrong or I'm doing something wrong or things I've done wrong. I've put myself at risk or my children or whatever. But recognising that people are operating within the limits of their understanding, their ability and that actually most people are doing their best and that is great. People might want to offload and tell you a story. And I know sometimes as doctors and pediatricians and nurses and things, you might have much less time to manage that. I know I'm lucky that lots of my appointments are one hour long or something, and so I have more time and space to give to people. But the next point is my difficulty, don't talk too much and allow silences. I do often realise, and I'm sure you guys get the same thing, that people often come to you with some story or some explanation and just as they're about to go, they drop the bombshell, the thing that's really, they really want to say, the most important thing, just as they're about to finish and then, you know, you have to give people space to get to the meat of the story they wanted to share with you. So allow for silences and be cool with that. I struggle with that. It's a challenge for me too. There might be. It's really important that COVID- 19 is a new thing, it's a defining thing, it's a moving on thing and language is really important and we really need to be careful about how we talk about people through this pandemic- and we've always had to be careful in the metabolic community anyway- that we don't say we don't conflate people with their diagnosis. There are people with this condition or with something or have had or have COVID- 19 or being treated for COVID- 19, there's been a real. I really had to challenge people in our hospital that we referred to places as the dirty ward or the clean ward and well, what does that mean? People in the dirty ward are dirty. So we've really had to challenge, really look at those languages- and I know in medical settings you are used to using language in a bit of a different way- but just be really careful. So it's not about try not to label people. At the end of the day, the important to remember is people, we're all people. So let's not define anyone by a disease, their diagnosis define them as people, quarantine and isolation. So you know, as the weather warms up, it seems that things are relaxing a little bit, but we know again that people might find it really frustrating, upsetting and difficult. I was working. We were working in and out, half at home, half in the hospital at the beginning and I'm in hospital full- time now. But for some people and for me it was really really stressful because I lived alone. It was just really really boring. But again, if you're having reactions, anxiety, stress, worries, that's normal. This is really different. We don't normally live like this. So, again, try and strengthen your digital relationships. Not easy for everybody. There's a concern that people with learning disability, older people, might be disenfranchised from networks because they don't understand technology. Or I don't really understand technology. Maybe I'm in that older category and the level of support I've had to have to manage this. Think about relationship challenges. There has been an escalation, in the UK at least, of concerns about domestic violence. You're in a situation where your normal escape mechanisms aren't available. So you know. Be again back to your safeguarding hat, be aware what people are saying in the subtext and get people to reflect on what's important to them and what they value: the health of their children and family, access to pastimes they can enjoy. Stay in the here and now. Make great plans for the future, yes, but what can you do today, right now to keep you going. Be imaginative, yeah, great, but also make a routine. I've seen a couple of people online where, at 2 o'clock- 3 o'clock in the afternoon, they are still in their pyjamas. This is not good for people. Get dressed, get up, face the day. Don't stay in your pyjamas all day. It will not help you sitting in your pyjamas with bits of old cereal on your pyjama top and, you know, won't help you feel any better. Get up, get a shower, be clean. It does. You know, change of what you do, just change how you feel. Be productive, try new things. I'm learning Spanish. I've been learning it for years, but I'm really concentrating on it now. Do things you put off for ages. I cleaned out the kitchen. Horrible rubbish drawer- everyone's got one. Maybe it's the time this is a good one. Limit the news. There's a temptation to feel I must know everything. I have to be involved. I have to know how it affects me and my family. I think that can become overwhelming and too much for everybody, and certainly for children and young people. You know, if you want to watch the news, watch it one time a day. Deal with that. Watch that, turn it off. Watch something else. Do something else you can't have too much news. Help other people. If you're mums and dads, you're all going to do that. If you're pediatricians, you're going to, you're going to be helping all our patients. That you get a lot of identity from being, you know, in our roles and our jobs. That's going to make us feel good. Think about you know. Hopefully you've got supports around our families and you are one of them, you guys, you doctors. So again, make yourselves available as much as possible to families, be available online, make those connections, strengthen them. Oh, I like this one: be kind. If you can do nothing else, you can be kind. Can't you but include to ourselves as health professionals and to our families? Be kind and understanding and encourage them to be kind to themselves also. And finally, doctors are the worst at this, you know. Oh, I must, must do everything today and whatever. But you've got to get rest, you've got to get some sleep, you've got to get some exercise, got to have a balance in life and share and talk- it doesn't have to be the psychologists with everybody. And you know, acknowledge lots of people are probably feeling the way you're feeling and that's okay. And so for our parents, you know, the families we're working with, talk to them about keeping their children close, being aware of what they're happening and what they're doing. It's, there's a temptation that kids can sit on tablets and off they go and the kids might be quite happy doing that, but maybe as carers we shouldn't really let that happen so much. Help, encourage routines, encourage, you know, some school time in the morning, some more relaxed time in the afternoon, encourage parents to be aware of their own stresses and their own discussions about COVID in and around children. Children have got really big ears and they can hear things and pick up things and get things wrong, so it's really important that we can challenge any misunderstandings or that crop up really quickly on. Be aware of our own behaviour as well. If you've got a mum or a dad who you're speaking to is really not coping terribly well, let's see if we can get them out really quickly or let's see if we can talk to them about how they can contain their own fears. I talk a lot in lots of my clinics about Botox face, about having a face that's dead to emotion, about some distressing things, that sometimes children look to mums and dads to gauge how they should react and how scared they should be and mums and dads sometimes have to fake it and have a bit of a stony face and say, no it's fine and you're going to be safe, because children need to believe their mums and dads can keep them safe and you can't with everything, but you can say we are doing our best. We can focus on what's in our control and we can focus on things we're grateful for in our life. There's some great breathing apps and activities you can do, there's a big list of resources at the end that are shared about things you can use and I'm afraid these are all in English because I am British, but there are, I'm sure there are other things available in Europe as well. And again, there are sources of information targeted to young people that we can encourage to be shared as well. There's a new Gruffalo rewrite, all right said the Gruffalo bursting with laughter, you go ahead, I'll follow two minutes, two meters after, that actually there are, there is accessible information for children to be aware and mindful of it. And again I said before, adults need to be really aware of how they are, how their own reactions are, but what information to provide, what not to provide, what can be held back. Be really reassuring, don't lie, we never lie, but you don't need to share all the facts. Again, same for ourselves, same for our children, limit media overload and be aware of how you're reacting. If you're not coping very well, get help for you as a carer, as a professional or encourage your parents to get help, because actually the kids need to see them coping really, really, really well. So again, we have to rethink of our hierarchy of needs, about safety needs, personal safety, self- esteem, about things of achievement and finally, you know, living up to our potential. Maybe we're not living up to our potential right now, but we are hopefully doing things to bolster and maintain our self- esteem. It is really important to remember, despite what's happening around us, you're still the same person. That actually, if you've managed a day that could be really stressful, well done you. And actually by doing that and modelling that, you're modelling it to our children and young people around you as well, and the parents can see you in clinic etc. That, you know, have you done amazingly full clinics that day and got through it and survived and got your notes done? I never manage it, let me know how. It's even, it's difficult for us as, again, health professionals. I think we have the solutions, we know the answers, we don't, but you know, we have to stay focused on what we're doing. If you run away too often, nothing gets achieved. What we really want to kind of focus is, most people will get through this okay. Most people will be fine, they're stable, they're better than they think, they're more stable than they think. But remember, certainly in the UK and I'm hoping in your countries too, services are still here to support you and help you and referral routes are still open and we're still here to provide support and guidance in a different way, but we're still here if you need us. But, you know, certainly for our mums and dads of children with metabolic conditions, they've always struggled and had a battle. They battled to get diagnosis when they knew something wrong, they battled to understand the condition and learn the facts, they battled to get access to the right specialists and the right treatments in different countries. But actually mums and dads of children with metabolic conditions are really skilled health service users and so, you know, remind them of all the battles they've won already and how well they're doing. And there's some great resources around in the world. Russ Harris has done some great, he's a psychologist who works for Substance Commitment Therapy, he's done this face COVID about posters you can put up around in around your clinics and share with people on the internet and it's all freely available. He's a great guy. But again, you know, identify resources, focus on your values. What makes you you? What's important about being you? What's great about being you? So really think about how you can still be you in this situation, how you can still do things that are important for you, meaningful for you and give you validation for yourself in your life. These are a list of all these apps. There's some online resources as well, some online videos, there's lots of things on YouTube. Again, sorry they're in English but, well, that one is in Northern Irish but it's still in English. I'm sure there are other resources available in your own countries but for people who can speak English and access English, there's lots of things out there and some references for you. There you go, questions and answers section. Look at that, not bad for time either. Let's go to the chat feature and see if there are no questions as yet. Great, well, excellent. So there's one question from a paediatrician. What one piece of advice and support should I give to MPS patients and one piece to help the parents? So patients depending on age, hmm, that's a tricky one. I'm not sure I have the right answer to parents, you know, remind them they're doing the best they can. So parents say if you're trying to keep your child safe, if you're keeping a routine every day, well done you. That's a piece of advice for parents and for children, maybe the piece of advice is there are risks out there. Doctors and nurses are doing their best to keep them safe and actually they have a condition where they have to trust doctors and nurses a lot and so we can say, well, as doctors and nurses we're really working to make sure you're safe as well and we'll do our best to make, to help you and provide all the treatments that we know can help you, that we always have done and that we will continue to do. I hope that answers the questions, albeit, but again sometimes you have to say, I'm not always sure. What should I avoid? And if they go stop, you know what you should say, how are you? How are you doing? Check in with people. Sometimes, you know, no disrespect to medics, you're a bit business orientated and focused. I know you're in a hurry, I know you've got a quick clinic to go through but just say to people, how are you? And mean it. Sometimes we say that, we just say it as a kind of a throwaway comment but what we really, right now, we really want to know, how are you doing? How are you coping? And that's okay. What should you avoid? Yeah, don't talk too much about, yeah, well, six to seven people in our hospital died yesterday. Nobody needs to know that, avoid that but, you know, what you should say is check in with people, how are they doing and where possible, validate what they're doing and try and find the things they're doing really, really well and focus on those things to remind them. If they are struggling, you know, get them to let you know and remember, what can we do to help you? There are services available, I hope, in your countries and see if we can help them access those services. Oh, there's another one. How can I best engage or judge in initial consultation? Yeah, that's a tricky one because you've only got, you know, not a great deal of time. People give you cues though, don't they? And you, I hope, we're all sensitive human types and we can work out when people are putting on a brave face or not so much. The ones to worry about, visible signs of distress, people tearing up really easily, you know, not being able to talk or share, it's difficult. People, people are different. Some people are better at faking it and, you know, putting on that consultation face, really. But obvious signs of distress, obvious signs of distress in children or when you can see people are really trying really hard to keep it together. And actually, the difficult, that's the one difficulty about online stuff is, it's kind of hard sometimes to make sure there's no one else there listening to give a safe space for parents. Because actually, I said before, kids have got big ears and hear stuff. It's kind of hard to make sure you've just got access to that person on their own, that they feel safe to really express what they feel about. That is a challenge, that is really hard because you don't know what's going on behind people. So, check out who's around, is it safe to talk, you know, can they really be free in that moment. But also, a very experienced psychologist said to me many, many years ago, don't do surgery with people unless you've got time to stitch it up again afterwards. If you haven't got time to unpack how people are feeling and help them get control and put themselves back together, maybe steer clear of it altogether. But actually, if you're going to check in with people and ask how they are, you know, make sure you've got the time and the space to let them express a bit if they need to. But you know, ideally, there should be at least some time in consultations where you can just speak to mums and dads or just speak to the young people to give them the space to be honest if they want to be, if they need to be, if they have to be. Great, that was a good question. No further questions. Great, well thanks very much everybody. Look at that, bang on time. I hope you found it helpful. 51 of you people stayed to the end. Fingers crossed you liked it. I'm sure there's a way of updating. Thanks very much.