Welcome to the third episode of the SuperLily Podcast.
Today I am so excited to welcome Nicole Hilburn, who is an experienced paediatric physiotherapist, and who we have been lucky to work with initially in South Africa and subsequently via Zoom. Nicole is MAES Therapy trained, something we will talk about quite a lot in the podcast, and she is passionate about combining her academic work with her approach to therapy in clinical settings. I think you are going to find Nicole’s thought processes and approach quite refreshing and different from a lot of traditional physio – this is really one worth listening to!
Prior to moving to the UK, where Nicole is working as an Extended Scope Physiotherapist in the NHS, she had her own paediatric physiotherapy clinic in Johannesburg, South Africa, and has been a lecturer in paediatrics at the University of the Witwatersrand, which is also where she obtained her PhD. Nicole is passionate about her academic work, and her PhD thesis established a new standardised developmental screening tool (suitable for use in a developing country) to screen for neurodevelopmental delays especially with children who had HIV positive mothers, and ascertain the need for further assessment or referral to rehabilitation services for them.
Funnily enough Nicole and I went to school together in Johannesburg (I won’t tell you how many years ago), and were happily reunited last year in South Africa where Nicole worked with Lily for about 6 weeks. During that period, not only did Lily make progress, but I personally learned so much about how to think about Lily’s motor development, and better ways in which we could support it.
Nicole, a warm welcome to the SuperLily Podcast, I have really been wanting to get you on it for ages and it is very sweet of you to join me, all the way from London, and really great to have an opportunity to speak to you, so thank you very much for agreeing to join me.
Pleasure, thank you.
Nicole, maybe we can start quite broadly with you telling me about your key specialisation and I guess your passion in working with paediatric patients?
Yes absolutely. So since studying I have always loved paediatrics and I think that was probably my favourite rotation in university. I particularly loved working with children in outpatient settings just because they are well and they have so much potential, but there was a lot I felt I could do to help them achieve certain things. So after university I spent a year working at Baragwanath Hospital doing community service and I was very lucky to get six months of that time in paediatrics, which was the deciding factor for me. Straight after that I went into paediatrics working in a few different private practices in Johannesburg and I saw children of all different ages with lots of different conditions, which just continued to spark my love and interest on this topic. I just find that children are so rewarding to work with, all they want to do is play and interact and being able to help someone to do that seems to provide so much joy and access to their environments. And obviously the other factor, which is very rewarding is to help parents of children who are maybe struggling to do things. So in short that’s how I ended up in paeds and it’s probably been about 20 years now, so it’s definitely my passion.
Well I think you chose right 20 years ago! Lily responded so well to you when she came to you in Johannesburg, and certainly I have always find your guidance and advice extremely helpful and quite enlightening actually. But Nicole, apart from practising, you also have some pretty serious academic credentials and have lectured at Wits. Do you think your academic pursuits influenced how you approach your clinical work?
Yes absolutely, so again since finishing community service, I have always held joint academic and clinical positions and I feel that research definitely informs clinical practice. It drives evidence-based practice and the way to evaluate outcomes is through doing research. I have also found teaching students, both in clinical settings and in theoretical ways has meant I have got to put together lectures and practical session with the latest evidence on different topics. So it has definitely kept me on my toes in terms of what the latest evidence is. In terms of paediatrics I love attending conferences to find out what people are doing in different parts of the world, which maybe we don’t have access to in whichever settings we are working in.
My own research has taught me how to access research and evidence, how to do literature searches and this has informed my own practice. So if there is something I maybe want to find about more I have the tools to be able to do that and I feel it helps me evaluate, sift through things, which approach is maybe more evidence based, is there anything behind what we are doing and how to evaluate that. And I think being a clinician we have to be very careful not to grasp on to every new thing that comes along, so I feel research and academia helps me on this front. In terms of new things that come along, is this something which might a fleeting craze or is there something worthwhile behind this. So in that way I feel, trying to knit the academia and the clinical side of things has been a really great balance for me.
That’s very interesting, in terms of the way it can give you the tools with which to assess, as you say, new ideas and new therapies and things that may come along. As an example, I know in your PhD work you developed new screening tools for children born with HIV, how did that influence your clinical practice?
Ja absolutely, so I think part of that research was using existing outcome measures and trying to figure out what works in different settings. So firstly I think it really helped me understand evaluating movement and development and children of different ages, and in having to develop my own tool, I think it’s just developing a really deep understanding of what we are trying to assess when somebody comes to us, and what are the important factors in what we are trying to achieve with them in treatment.
There are also so many outcome measures that you can use, so it’s shown me we have to be very careful about what we use to evaluate our outcomes in therapy, because if we just base it on a score, we might miss some of the quality changes, or the small important things – so things like communication, play, that kind of thing. So I think it is really trying to develop a balance between what we know are solid outcomes and then using our intuition and our understanding of children’s development and what we are tyring to achieve, in ensuring that the goals we setting for children are measurable but also so that we don’t miss some of the beneficial outcomes of therapy if that makes sense.
Ja Nicole, yours has always been a very nuanced approach in my experience if one could call it that. You know Lily has seen in a variety of specialists who do loads of assessments, and obviously I understand assessments are necessary sometimes, but I do often bristle when I feel is just a box-ticking exercise – I guess that’s the protective parent in me. Whereas, your approach or the way you think about Lily’s therapy is always contextual. You know you talk about her prematurity and the sensory challenges that brings, it’s not just about motor can and motor can’t. And the thing that really helped me a lot actually is also this idea of having an idea of how Lily feels in her body, how her body feels when she is trying to interact with her environment.
If I am not mistaken, quite a lot of this also comes from your training in MAES Therapy. Recently I listened to a fascinating podcast where Jean-Pierre Maes was interviewed about his development of this approach. And having experienced his way of thinking through Lily’s sessions with you, I have a bit more insight into how it works, but it is not always easily explained and I guess he admitted as much in the podcast. So could you tell me more about how you came to be qualified in MAES Therapy first of all, and then, you know how you see the general philosophy or how it differs from “traditional” physio?
Yes, so I think on the path to becoming a paediatric physiotherapist, particularly in South Africa (so I am speaking from that context now) once I’d qualified, the route to take in turning into a paediatric therapist, was to do the neurodevelopmental therapy course. Which is an 8-week postgraduate course and you immerse yourself in assessing and treating children with neurological difficulties. So I did that in 2006 and absolutely loved it, and South Africa has got very close links with the Bobath Centre in London. Very fortunately we had a lot of Bobath tutors coming over from London to run more advanced courses for people who’d done the basic course. One of those tutors happened to be Jean-Pierre Maes, so I did I think two or three of his advanced NDT courses and absolutely marvelled at the outcomes he achieved with the patients that we had on the course. On those courses you always have children to work with and you get to see their progress over time. And I just couldn’t believe what he achieved with these kids.
Interestingly under the NDT banner, I didn’t really always understand what he was doing with them, or how it fitted into NDT, or how to reproduce that myself. Until actually he developed his own approach which is known as MAES Therapy, and he broke away from the Bobath Centre and actually started teaching this approach of his under a separate name. And then it all made a lot more sense. Just because I’d loved his courses under the NDT banner, loved the way he teaches and more importantly the just the outcomes he achieved with his patients were incredible, and I wanted to know more, try and learn some of this approach and achieve those outcomes with my own patients, so I did the MAES course.
So in terms of your question on what is the difference. It’s quite a difficult thing to explain obviously as you’ve realised from the podcast and things you’ve listened to. It’s very different, so if we had to pick the major major difference, I would say, NDT makes a child work harder to do something; it’s often about strengthening, alignment, “taking them up”, and trying to progress through (not the developmental positions or milestones) but you try and take them further than where they are at the moment. So if they are sitting you try and get them moving, and trying to progress them.
Whereas if I had to say what the difference with MAES is, I think MAES takes each type of neurological difficulty, the main example used under these courses is cerebral palsy, and tries to figure out what movement difficulties a child has, and then use those to approach the treatment. And I think the biggest biggest difference is, rather than making the child work harder, or taking them up, the idea is to get different and new movement. He uses a lot of different ways of doing this, and it is often actually “keeping the child down” and giving them more support, in order to help them develop new patterns of movement, different ways of coordinating movement, and in that way you actually get them to progress. If that makes sense.
So rather than trying to get more movement by the child trying hard and “taking them up”, which is the way the NDT approach works, the MAES Therapy aims to improve the quality and the quantity of movement, but this is often by “keeping them down”, if that makes sense.
Ja, I guess it could sound a bit counter-intuitive, but to me in the way you have explained it in Lily’s case, it has always made sense. You know, giving her the chance at an easier level, to find a good way of doing something, creating helpful sequences of movement, rather than as you say, constantly trying to move her along the expected “typical development” trajectory.
I wonder, if we use Lily’s case as an example, could you explain how MAES techniques can be applied to help her. So we have often spoken specifically about Lily’s sensory processing challenges, and need for greater proprioceptive input. How does MAES think about these?
Ja so interestingly, after doing all kinds of courses and using different ways of treating children, the one amazing benefit of MAES, as far as I know, it’s the only approach I have come across which actually separates out the child who was preterm and has a whole separate way of approaching somebody who’s struggling from a neurological perspective, but has a background of prematurity, and this is because of the sensory challenges that prematurity presents with.
I think obviously you as a parent are aware, but the challenges of being premature from a sensory perspective are enormous and I think influence the child’s movement more than any of us understand.
What MAES therapy does for a child that is preterm, is takes this into account, and actually structures the treatment very much around those sensory challenges. And I think one of the biggest factors with being premature is sensory processing, so under the MAES banner for a child who was prem, one of the big difficulties is the sense of knowing where you are in space, and knowing that internally versus having to use everything around you to get that processing going. So I think this is one of the biggest factors in treating someone who was premature using MAES Therapy, and trying to develop that internal sense of processing in a whole lot of different ways through using techniques that Jean-Pierre Maes has developed. And trying to help them not to use the environment and external factors to know where they are in space, which then would mean they are very dependent on things like their base of support, what kind of sounds and other things are going on around them, which would then influence their sensory state and in turn influence their movement.
So I think if we go back to more traditional physio, which I am going to call it NDT because I think that is what people are probably more familiar with. Where NDT looks at things like alignment and motor skills and breaks them down into components to achieve certain skills, what that doesn’t take into account with someone who was premature is that they are actually terrified to move from one base of support to another and if there isn’t any support, either they won’t move, which gives us the idea that they are further behind than we think they are, or they really struggle to achieve what we are trying to get them to do if we don’t understand what is difficult for them.
So what Meas Therapy does for the child with neurological difficulties who was preterm, is actually gives that support, initially, so that the child can relax, learn to move without the need to stiffen up because they are scared to transition from one external base of support to another, and they don’t have to worry about where they are in space, because some of the techniques we use in MAES Therapy give them that sense. And in doing this, amazingly, the child is happier to move, starts to use different ways of moving and you can gradually reduce that external support because they’re starting to develop a sense of where they are in space, and this internal processing. And you suddenly get more movement, a whole lot more skills coming through, and that the child develops different ways of moving. This is really through looking very very much at the sensory side of things and not just focusing on the motor side.
And Robs you’ll know from the last session we had, the other thing which I hadn’t thought about before I did the MAES course was the choice of toys in the session, the environment you are working with the child in, because these are all types of sensory input which can really impact the child’s state and their ability to move in different ways. My practice was filled with toys with lights and music and all kinds of very very stimulating things, which I now realise actually changes what type of sensory output the child is giving because they are very stimulated by these things and they can’t let go of that sensory input. I have also realised when looking at motor output, we need to consider everything about the sensory system, so what base of support the child has, if they have an idea of where they are in space, and the external sensory stimuli like visual stimulation and auditory stimulation, and all of that helps to create an environment where you have more optimal sensory processing, so that the child is free to develop new ways of moving.
It’s so so interesting Nicole and it really makes a lot of sense to me, I’m beginning to see it work I suppose. One example of something that’s happened quite recently is not so much movement, but Lily’s improved ability to sit, which is happening in the bath. And it makes so much sense because there her base of support is clear, she can sense where she is in space, or she can define it because she has the front and two sides of the bath which she can touch, and maybe the water provides some buoyancy and proprioceptive input, who knows. But I have always found this idea of giving her the ability to reference externally where she is, because her sensory system struggles to do it internally, very powerful.
And the other point you make about toys is increasingly important for Lily. Oh my goodness, as she becomes more independent and exercises her toddler will with confidence, if she does get into one of these sensory loops maybe with a very stimulating toys, lights flashing or gaudy recordings of nursery rhymes over and over, she gets so cross so that if you move that toy, instead of motivating her to go and get it, she stiffens up and is unable to do the movement. So we are having to think quite cleverly about new toys to motivate her with.
And then finally, the other piece I think which is very much a MAES way of thinking is, create the supports around her, help her or facilitate the first part of a movement, but then wait and let her figure it out. I guess are trying to teach her brain, and sometimes whether in therapy or at home, you almost just help her go through the whole motion, but that doesn’t teach her anything, does it. I mean that was something that Jean-Pierre Maes was saying in the Wired on Development podcast, is you take it halfway there and then let them figure it out – we are training the brain, not the muscles.
Yes, absolutely so I think that speaks very much to motor learning and if the movement is done for you and you don’t have to anything yourself or you maybe don’t have to figure out the next part of your movement, you don’t form that connection. So it’s like sport or music or any skill that you practice and you improve, you improve because you keep using that pathway and you strengthen it, but firstly it’s about strengthening the pathways we want to, and not keeping on going down pathways that are not helpful, and secondly it’s about the action of doing the movement or the activity that actually creates that new pathway and in turn that’s what allows you to develop different movement, which is why active approaches are much more effective than things being done to or for people are struggling with movement, because in doing that movement themselves they have to create a new pathway in their brains.
Honestly, the brain is a truly miraculous thing that know so little about still. All I can say is that Lily has really responded so well to all the different elements of MAES that you describe. Unfortunately there don’t seem to be any active MAES-trained therapists in Hong Kong, so come on Hong Kong, sign-up, sign-up, we highly recommend this approach!!
Right now Nicole, you’re quite academically oriented and I like to think about how we can optimise all the interventions that Lily can get, and I’d love to hear from you what you think the major and most impactful new areas of research and discovery in neurorehabilitation will be, and that we and other parents should be on the lookout for?
Absolutely, so I think the word probably has to be the development of technology which enables us to maybe understand these things better. For example, things like brain imaging have evolved hugely over time and there’s a fairly new type of brain imaging which has come out in the last little while which is called Diffusion Tensor Imaging and this actually allows you to see the pathways and connections in somebody’s brain. So, I think this may be a really useful way of evaluating different therapeutic approaches, firstly maybe understanding what connections people with conditions like cerebral palsy do and don’t have compared to somebody who maybe moves more typically, and then using that to evaluate what different therapies do. So if somebody looks like they are achieving better movement or new movement skills, what is it in their brain that has changed, which parts of the brain have we worked on and maybe giving us more answers to those kinds of questions.
The other type of useful imaging which is starting to be used in a lot of research is Functional MRI so as somebody moves you can actually see which parts of the brain they are using. The Diffusion Tensor Imaging is probably more of a static thing, so you can see what is there and what isn’t, and functional MRI you can see is being used while someone is speaking, moving, thinking, using different emotions. So again, if that could be used in a research based way to try and determine what we need to work on, or what we’ve improved, or where we still need to work, I think those features would really inform us a lot. And I think inform us on which approaches would be helpful, or what components may be helpful. I think also there’s not one approach that’s perfect for everybody and as a clinician and a therapist, I find myself drawing on different approaches every now and then, sometimes my own tuition, past experience and really trying to match that to an individual.
There’s a very useful resource in Canada, which is the CanChild website and it’s headed up by somebody called Peter Rosenbaum who has done the most amazing research in cerebral palsy, but one of his biggest things is no individual with cerebral palsy is the same, so you can’t treat two people the same. You have to individualise your approach.
I think probably the other really useful area in terms of technology is the advent of telehealth and telemedicine. I think what that will do, (over Covid all of us had to try and adapt to virtual sessions which was quite a mindshift) but what that will enable is people all over the world to access different approaches that may not be available in their setting. And I think therapists are getting better at delivering therapy in that way, so it may not look like the traditional hands on therapy, but I think there is a lot you can achieve in terms of passing on information, assessing how somebody moves, trying to isolate what parts of an approach may be helpful ,and I think the other really beneficial thing being able to see somebody in their own home. Because in an outpatient setting a child comes to our practice and use all the stuff that we have there, but doesn’t necessarily mean you can adapt that in a home setting. So it really gives you a snapshot of what do they have available, what does their environment look like, being able to advise around that side of things, and give some nice input on setting things up so that they can achieve a lot during their playtime and being at home to bring in the components you are trying to achieve in therapy.
I do like the idea of introducing components of therapy into play and daily life. Something that I think is promoted by CanChild’s F-words in childhood disability, which if I remember are: function, family, fitness, fun, friends and future, and really they’re about incorporating all these things into daily living with CP. You know, she doesn’t wear them full time yet, but we have started to put Lily’s AFOs on in the playground, so that she can practice her stepping while playing with the outdoor abacus she loves so much. It’s infinitely more motivating than moving a toy across a bench in a clinical setting.
Wow, this has been such a great conversation, I know that everyone who listens is going to learn so much! As you know, Nicole, SuperLily is a resource for parents, and as such I always ask my interviewees for some parental advice. You have worked in a variety of settings, from public to private clinics, and in the developing and developed world. Around the world and in different circumstances, it can sometimes be difficult for parents to access and to afford the myriad of interventions offered for children with global delay. If you could give parents 3 key tips in terms of making the best of what they do manage to access, what would those be?
It’s a really important point and you know I think, my first tip would be, to trust your gut. As a parent you know your child best of all and if you feel that the approach or the setting that you are in isn’t working and is not achieving what you hoped it would, or maybe not as much or what you feel could be there for your child. I think just keep searching. On this first point, any health professional will tell you that a parent’s gut instinct is incredibly strong and a parent should always trust their gut feeling. Keep advocating, keep searching, make sure firstly you understand and secondly you are comfortable with what you are embarking on with your child, because I think so much of therapy involves family involvement and there needs to be that trust in the process in order to achieve the result you’re wanting to.
I think the second thing I would say is keep on reading. I mean, Robs you are an amazing example of this, where you have done so much of your own research, and reading and you’ve stumbled across all the right things, I think all the research and all the networks and forums that most therapists would recommend and you’ve done this largely on your own. But I think the biggest thing is to choose sensible networks and support groups. I think the problem with technology and social media is that there is access to a lot of stuff which maybe unhelpful or not really evidence based, and I think it’s just to know in terms of conditions like cerebral palsy any developmental difficulties with children, there’s no quick-fix, and I think I mentioned earlier passive approaches are not shown to be very helpful. There is a lot on offer, where you can have this surgery or take this medication, and everyone hopes that will fix the problem, but actually in terms of evidence approached therapy and what may be most beneficial, it’s a long hard journey, but on the other hand often a very rewarding and positive journey when you find the right balance.
So movement and development happen through doing things and it is that parents surround themselves with sensible support and correct information, and try very hard not to latch on to the first thing that they happen on that sounds like it may be a nice quick easy route to sort things out.
And on a previous point that we’ve discussed, I find, so my third tip, is I think the greatest changes in therapy happen when it’s carried over into the home environment and it becomes part of their day. I think in my experience lots of parents rely on the therapy sessions in a week, as you know we’ve done this okay that’s fine, we’ve been to physio, we’ve been to OT, we’ve been to speech therapy, and then you know home is a whole different environment. I certainly would recommend tyring to mimic what is being worked on in therapy in the home environment, and that becomes part of the child’s play and part of the day, rather than being seen as extra exercises to do outside of whatever else they may be doing. So, to me the greatest changes will happen when there is carry-over and the activities or the components you are working on are actually part of their daily routine. I think that has the greatest chance at success and it’s because of the whole motor learning theory where you keep on reaffirming the pathways and the connections that you want and in that way you can make big changes.
I think this is great advice, and it’s not always that easy or practical, I must say, but I it can be much more motivating for young children, because what it does when you incorporate these components into everyday activities, is make them more functional. This is something that our physio Jess Tuohy here in Hong Kong always talks about, is having a functional approach, so that what they’re learning to do, how they are learning to move can actually be useful in their daily lives.
Gosh Nicole, thank you so much for sharing all your insight and expertise with me, it has been such a pleasure talking to you.
Thank you Robs, and thanks for inviting me to chat to you and just for being such an amazing advocate for children who need a bit more help and input, and I think your SuperLily resource is a really really fabulous one and a wealth of information for parents, and for therapists because I think it gives a lot of insight into being a parent of a child with some additional needs, which is very important for therapists to bear in mind. Because it’s not about what we want for the child, but also looking at the child as part of a family, so thank you for setting that up and giving us insight into that side of things too.
Ah, well thank you for your very kind endorsement, I love especially that you’ve called it a resource – because that is exactly what I hope it can be, as you say for parents and families, but even therapists and medical specialists too.
To listeners, you can find links to any of the technical terms or the types of therapy we have discussed in the transcript for this podcast, which you’ll find on the SuperLily blog, www.super-lily.org, so you can read more about any of the issues if you would like to, do go and have a look.
Also, please feel free to share the podcast with your friends, family, networks – it would be wonderful to grow SuperLily’s following, and to be able to bring a parent’s perspective to others who may benefit from it.
In the meantime, stay tuned for another episode of the SuperLily podcast hopefully coming sometime soon.
Stay safe, stay healthy, goodbye!