There we go. Right. Yes, boring bit, disclosures. Mine and Lindsey’s. Yep.

So, Lindsey’s going to start by talking about physio. So we’re going to talk about physio, we’re going to talk about play, we’re going to talk about exercise and combining them. T

Thank you. Good afternoon and thank you for inviting us to come to the conference. It’s my first time at an SMA conference, so I’m really pleased to be here.

So, we were given this title and we had a bit of a think and we thought, well, we need to think about what’s physio and also a little bit about what is play.

So when you think about physio, I don’t know if you’ve had a physio yourselves as adults, maybe you broke something and you needed a bit of rehab or you know somebody who’s had physio, but physio is traditionally about rehabilitation, about helping people restore normal function, normal movement back to normal activities. So physio is essentially about movement. It’s about reaching or lifting or bending or stretching or balancing.

Physio is always pretty much about moving. So it’s also about activity, rolling, crawling, walking, climbing, jumping, running, driving, swimming. So it’s those two combined, I think.

When you see a group of physios together, they’re quite competitive, they like activity. I think I’ve slowed down a bit on that, but physio is generally about movement and I think thinking about it generically, and in a big way can demystify it a bit because we’re really thinking about how do we move and how do we function? So we’re thinking about movement and activity.

So why are we going to do physio in SMA? So in SMA, we’re thinking about the underlying disease process and we know that movement can be tricky, that weakness is the big factor, fatigue is another really big factor. So the reason we do physio in SMA is to try and keep the muscles soft and flexible.

As the baby, child, young person and adult, well, young person grows, specifically while children, while our body shape is changing, while the bones are growing longer, while the muscles are stretching out, we’re trying to keep muscles soft and flexible to encourage movement for function, so that the child can do things themselves or can do things with a bit of help. We’re trying to keep the joints mobile and pliable to optimise balance and posture. And we’re trying to do all those things so that we can promote activity, to use the strength that’s available, or to maybe get a bit of extra strength.

 

Now we’ve got these treatments, we’re really looking to sometimes strengthen muscles because we’re really hoping to promote skills, to promote movement and to either maintain what we’ve got or get things a little bit better if we can. So it’s about keeping the muscles soft and flexible, keeping the joints mobile, to enable as much movement as possible.

So this slide was looking, originally looking at what we were doing in terms of physiotherapy for type 1, type 2, type 3. We could change that to non-sitters, sitters, standers, and walkers. And we’re looking at everything that Lindsey said and how we’re looking at that is looking at positioning, embracing, seating positions, stretching, types of stretching which we’ll talk about, orthotic provision, functional things, whether that is self-propelling your manual wheelchair or standing, crawling, all of that.

So, I’m not going to go into massive details but those are all the things that we’re wanting but we need to think how to do this in a fun way. So all the things that we might want to include in a physio home programme, passive and assisted stretching.

So assisted stretching is basically the child or adult joining in, which is the right way to do it. Active or active assisted strength work. So if you could do something by yourself, we want you to do that but you might need somebody to help you to do it. So it’s an active exercise with a bit of help.

Sling suspension is one way of exercising with gravity taken out of the equation. Tummy time, really important. Rolling, head control, standing and weight bearing activities, stepping, walking, splinting, orthoses, hydrotherapy or aquatherapy is probably what I should say which we’ll come on to.

So all these sort of things are what we’re wanting to include but it can be boring. So what we need to think about is what is play and how we combine these. So if I said to you, what do you play? Some of you might say, well, I used to play the flute, or my mum made me play the piano, or you might say I play paddle, or I like playing jokes. So usually play is something that’s fun, something we really like doing. It makes us smile. It makes us feel happy. We enjoy it.

And lots of children love, children love playing. So, is there a way that we can bring the two together? So sometimes when we play something, it can be a bit tiring. For those of you who might play any sport, you know that it can be hard work if you’re learning to play the piano. It can be hard. So sometimes play is something that we have to work hard at to get somewhere. We might have to concentrate quite hard too.

I know a lot of people like playing games, and they may be computer games, and they’re quite difficult. They are concentrating hard, and they’re quite difficult to get off those computer games. So sometimes we have to work hard at play. We have to concentrate at it. Music, games, sports, baking, drawing, acting, computers, painting, chess, cards. It often involves another person. We often like to play with someone. And we might involve, it might involve a pet.

So, there’s also the other consideration of government recommendations of how much exercise or activity we should all be doing, and this is different in different age groups.

So I had a quick look at what it’s recommending. So all children, even if they have problems or not, should be doing a certain amount of activity, but that also includes children with disability. So, we also need to take that into account.

So exercise and activities, as some of them we’ve mentioned, can be group activities. PE, really important for children to join in with PE. It probably has to be modified. It might be, for example, in secondary school, that if one group’s doing rugby and another group is doing table tennis, you get your child to be in the table tennis group. So there should always be modifications available. If they’ve got a one-to-one, you can take them aside, do perhaps the warm-up before a sport, and then do different exercises afterwards. But inclusion is really important. So whatever sport, we all have our favourites.

Wheelchair sport’s really important. Online activities are something that I think is increasing, and we’re going to mention that later on. Yoga, my particular favourite. Pilates, all of these can be modified. Horse riding, otherwise known as hippotherapy, all really important activities.

So, thinking about younger children, we really want to work on sitting balance. So think about toys and activities that they can play in that position. And I’ve got a box here, actually, which one of my families gave me last week, which they had. Very sensibly, this mum had all her toy boxes organised into different themes, and this happened to be her music box.  So this was all, I’ll leave it up here so people can have a look, all lightweight musical toys, which was a good way of, today this is what we’re doing. And a lot of them are blowing activities, so that’s respiratory work.

On the picture there, you’ve got my colleague blowing bubbles. So that’s fun. He’s playing, but he’s also working on his sitting balance.

So play is therapy, and physio is fun. People don’t always think so. But simple things like reaching out of your base, so you’re putting toys a little bit further away. The child is having fun. They might be doing a lightweight jigsaw. Anything like that, but you can make it physio. So it’s not, we’re now doing a physio session, I’m playing with my child.

Standing is really important with children, and lots of different ways of standing. You can see here we’ve got a child standing in KAFOs, another one in a standing frame. And quite often what works well is to have activities that you only do in standing. So I’ve put

art pictures on there, because quite a good one is to have an easel, and that’s something you do when you’re doing your standing. So you’re doing physio, but you’re doing art, and that can be fun.

So this is Lindsey’s patient dancing, I think.

Yeah. She’s dancing here. Can you hear the music? She was just learning to use her KAFOs, and the way we got her to help her balance, can you see, is to do the dance moves. ____ she’s singing, just in case, for those that understand. So likewise, in KAFOs we might do basketball throwing, ball games, walking in and out of obstacles, any fun activity. So here she was just starting to use the walker, this little girl had not really walked before at all, well she hadn’t walked before, and interestingly it was her parents that showed me a video and said, can we get these for my daughter? And there were some challenges to that, but because it had come from them I thought well, brilliant, yes let’s give it a go. And the way they first got her to walk was by bribing her with money to walk across the room. She really quickly cottoned onto this, it was costing dad a lot of money, but because it was really interesting for me, it was a bit of a learning point for me, because there was quite a lot of difficulties and challenges as I said to getting the prescription right and getting the provision, but the family were very motivated and yeah, so far so good.

So I mentioned yoga before. So, yoga is something that is very inclusive, I’ve done my yoga teacher training so I like to modify, so I admit this child doesn’t have SMA, it’s actually my granddaughter, but she was modelling for me. But there’s a box there called yoga pretzels which is a great activity that you can do as groups or individual and all of those can be modified. So each come with a card and different sections and you can do sitting poses, you can do standing poses and you can adopt them, and they all have the real yoga name and then the sort of child-friendly name, which is a fun activity to do.

And there’s also, I have a book at home which is to do with pranayama, which is the yoga breathing which you do with hand exercises, and again that’s a useful thing, and you know, you’re not doing physio, you’re doing yoga. I had a patient who always objected when I did a home visit, and I said well I’m not doing physio, I’m doing yoga, oh great, I’ll do yoga.

So ball games, oops sorry. Why is it not? It’s supposed to be a video. Ah there we go. Yeah. So ball games, this is one of Lindsey’s patients on the left playing ball. Obviously he’s doing upper limb exercise, he’s doing sitting balance, he’s working on his posture. The other one is a girl who actually we’re doing a bit of a double trouble here. She’s wearing her KAFOs for a prolonged stretch of her hips and knees, and instead of just lying there being bored with them on, she’s playing with her teaching assistant ball games again, and that’s something she really enjoys.

Sling suspension is something that I really like. So this girl is, I set it up with her using her ceiling track hoist, so she has her arms supported. We do boxing where she’s punching my hands. We’re incorporating four different shoulder movements. She doesn’t want me to show the video, which is a shame, because you see the look on her face on the video. She was in such a foul mood when I arrived and really did not want to see me, and just a few minutes of exercise and it changed her completely. She’s suddenly smiling and laughing because she’s enjoying it, and she’s enjoying the movement. So you can do it like that.

I rig it up all sorts of ways with little children. You can use a play gym and tie their legs up that way and get them to do some kicking. This is another homemade sling suspension, again using a ceiling track hoist, so you’re getting leg movements in that position.

Swimming or all water-based activities. We all know there’s a massive lack of hydrotherapy pools and hydrotherapy availability in the UK. It was bad enough before, it’s been worse since COVID. So many pools have closed down. But it doesn’t have to be hydrotherapy, it’s any water activity. So with the little ones, bath time is a great time for exercise, paddling pool in the summer, swimming lessons can be modified or have one-to-one swimming lessons. Any movement in water.

One of the parents last night actually showed me a video of her son in water, and he was doing some great stuff, things that he can’t do online. Nice picture of Ezra there in his hot tub, enjoying it. There’s a whole range of buoyancy aids, so ask your physio what’s suitable, whether they need something to support head or arms or trunk, and we can always advise on that.

So, what we’re saying is connecting play, fun and activity physio. The best physio programmes have a variety, including special interests, updated, adapted regularly. We want him to be active.

I’ve just realised that was your slide. It doesn’t matter. Yeah. So what we’re trying to say is that if we can bring the two together, that we can provide that challenge to work muscles or stretch muscles.

But actually physio is a long game in SMA. Providing activity, promoting activity, stretching, keeping joints mobile. It is a long game. Even with the treatments, we know, unfortunately yet, there’s not the cure. And we’ve seen those improvements. So physios need, programmes need adapting with age and changing interests. But it also needs to be doable over a long period of time.

That yes, you can have a short, sharp physio session, or hopefully not sharp, a dynamic physio session. But actually, it’s got to be something that a family or a school care team or TA or whoever can provide over a long period.

So we’ve got to find a way of joining together physio and play. Yes. So a lot of what we’ve talked about is great with younger children. They want to play. Teenagers, they only want to play online games. So it’s a little bit more difficult.

I don’t have any experience of this particular programme, but I know someone who does. And she uses it with her OT and physio. So she’s practicing, this is a teenage girl, she practices her sitting balance with the physio behind her. And then she’s using this online programme with the OT. And I said to her, I asked her if I could interview her today, which she said no. So I asked her for some quotes. And she said, it’s not as boring as most physio, was the first line. The second one is it distracts me. So I don’t think about the fact I’m doing physio. And the other thing was that it was really good fun. And because she’s playing a game, she’s not thinking about the sitting balance. And she’s playing the game. And without knowing it, she’d done 100 of the same upper limb movements, because she was enjoying the challenge of the game. My understanding is this is in development. I think it’s an Australian company. But I do have the details if anybody wants to look into it. But certainly for this teenager, she enjoys this activity. And I think this is something that we need to look at more. And this is probably one of the ways of moving forward.

Thank you. So you’ve heard what we think about physio and what we think about activity. But we actually thought it’d be really good to try and ask one of our young people and thankfully his mum as well if they’d be prepared to share their story.

So Cai and his mum Hannah have kindly agreed to come. Cai, do you want to come up? And you can bring your mum.

Yeah. Give him a clap, just give him a clap. And they’ve agreed to be interviewed about having physio. Expert driving, Cai. Just watch the edges. Brilliant. Thanks so much. Give him a clap, everybody.

Hannah, have a seat. Do have a seat. So actually we maybe could do with another mic if we have one. Okay. They’re bringing another mic.

So it’s quite bright up here, isn’t it, Cai?

It’s a little bit more scary. Right. Thanks. Great, thanks. Okay. Cai, can your mum hold the mic for you? Is that alright? Oh, you can hold your own mic. Brilliant, even better. So Cai, do you want to tell us a bit about you? How old you are? Where you’re from? What year are you in at school? Things like that.

I’m Cai. I’m 10 years old. I go to Ireland Wood Primary School. Okay. Say it again. Say it again. Are you 10?

I’m Cai, I’m 10 years old and I go to Ireland Wood Primary School.

In which city?

Leeds. In Leeds.

Brilliant. Thanks, Cai. Thanks so much for coming up here. Right. I have to put my glasses on to read the questions.

So, we’ve been talking about play and activity and exercise. What activity and exercise do you like doing? The one that mum and Tiff pulls me in…

What do you like playing?

In football, wheelchair football.

Brilliant.

My Xbox, skiing, and hydro.

Okay. So you like hydro, you like powerchair football, I know that’s your big thing. We’ve got some video of that in a minute, which we might show. And gaming, did you say? What games do you play?

SE26.

I don’t know what that is.

Fortnite.

Oh, Fortnite. I’ve heard of that one.

Rocket League, Roblox, Minecraft.

Oh, Roblox, Minecraft, the works, basically. Okay. Sounds like you’re pretty much of an expert. Okay. So Cai, what does physio look like for you? What physio do you do in a week? What do you do on a school day?

Well, I go on the wedge and MMP and then I do twisties, like my…

So you have a school programme?

My legs go to the right and then my body goes to the left.

Oh, dear, that sounds a bit like yoga. Legs to the right, body to the left. So you have a school programme?

Yeah.

Do you do it every day?

Yes.

In school every day?

Yeah.

Excellent. And what about at home? What physio do you do at home?

Well, standing frame, my gaiters, and just some normally when mum tries to get me to do some stuff. Okay.

Maybe we could ask mum some questions, can we? Thanks, Cai. So, Hannah, what physio do you do with, or what does physio look like at home for you and Cai?

It used to be sort of, I’d say, right, okay, we’re going to do physio now, Cai. And it was half an hour here or an hour. Cai hated it, wouldn’t do it, very resistant. So now it’s more in the morning, getting dressed, Cai has to bring his knees up for me, Cai has to put his arm for his T-shirt now. So it’s starting from there and then bits like board games, playing Jenga, the table’s a bit higher, he has to reach higher. Trying to do it in bits like that so Cai doesn’t actually know he’s doing physio. He probably just thinks I’m being a bit mean, moving stuff a bit further, making him get his own things more. So I’m trying to put it in everyday life rather than physio.

Brilliant. So it sounds like you’re providing a bit of challenge to his activities. So make him work harder?

Yeah. Is the aim.

And how did you get to that stage where you knew how to do that?

Yeah. So we’ve got a physio called Tiff who’s great. And Cai’s really responsive to her and would do bits whereas his school programme, which is very regimented, it’s structured, it’s the same every day. It’s developed sort of every six weeks when a physio comes in or longer. And he doesn’t respond well to that. Whereas the ones with Tiff, it was bits where she’d just be like, Cai, you can do this when you’re getting changed. Or there’s some times where Tiff turns up and we do something and I can’t even work out that it’s physio. And I have to say to her, which muscles is he using for that? And she shows me and I’ll put my hand on it and it’s trembling. And so she’s shown me it’s not a programme where you’re reading through, do this, pull this way. It’s more everyday life sort of thing.

Brilliant. We’ve got a little clip, if I can get it to work. Oh, no. Okay. That develops though from, you know, that pig game where you feed them burgers?

No. So Tiff brought round a pig that you feed burgers and that’s how the physio started. And the next thing you go, we go from feeding this pig to that. And it’s just great.

You don’t even…

Yeah. She turns up with the most random things.

Brilliant.

And they’re the burgers in his hands from the pig.

Yeah.

I heard about burgers. I wasn’t sure what they were.

Yeah.

So Tiff is a colleague of mine who sees Cai privately, we would say. But you’ve just got a brilliant relationship and it’s really worked well for you, doesn’t it? Really works well for you. Cai, how do you feel doing physio helps you? Do you know how it helps you?

Well, it makes my body stronger and sometimes I sit straighter so my mum actually doesn’t moan at me.

Yeah. Say that last bit again. You feel sit straighter and say what?

So my mum doesn’t moan at me.

Your mum doesn’t moan at you. Okay. I’m sure she doesn’t moan at you really. But yeah.

Okay. So you feel it helps you sit straighter and you feel it helps you get a bit stronger because you have done some strengthening work.

So Cai does some… That work that you saw there was some strengthening work as well, wasn’t it?

Yeah.

And you work hard on that. Well done. I’m just going to show you this is Cai’s passion ifI can get this to play. Here we go. Are you in the pink on here, Cai? Okay. So tell us about the powerchair football, Cai. How did you get into that?

My mum just kind of found it on the website.

Okay. Your mum found it on a website. And when do you play?

Two years ago.

When you started two years ago?

Yeah. Yeah.

And what day do you play?

Saturdays and sometimes Wednesdays.

Okay. Training and matches?

Sunday. Always Sunday.

So quite a big commitment.

Wednesday, Saturday and Sunday sometimes.

Yeah. And I think you might be a striker.

Well, kind of I play any position really, but mostly I’m middle.

Mostly in the middle. And do you like scoring?

Yeah.

Are you the top goal scorer?

I was last season, but yeah.

Brilliant. No. And do you get tired playing football?

No, not really.

Not really?

He used to.

Yeah. I used to because my neck wasn’t strong enough,but yeah.

Used to ’cause your neck wasn’t strong enough did you say?

Yeah.

Okay. And do you think football’s helped your neck get stronger or did you work on some activities?

Yeah.

What did you do?

I still don’t know. I just played the game, I guess.

Not when you did the one with Tiff? Give your mum the mic.

So, because he was struggling, it was his neck weakness in powerchair football. And so Cai came to Tiff and he’s like, I want my neck to be stronger in football. So, Tiff being Tiff, they have this game where Cai lays on the floor, probably doesn’t sound great, but it is, with a really strong sort of adult thera-band under his head. And they fight and Cai has to try as hard as he can to get his head down, while Tiff’s trying to pull his head up through a thera-band. And it’s games like that he sees as such fun, but I can see the progress it’s made in the powerchair football.

So, he has so much less support than he did even a year ago, don’t you? What’s great about that is you set your own goal.You set your own goal there, didn’t you? That you knew what you wanted to achieve.

Yeah.

Brilliant. Thanks very much. So, Hannah, for you, what do you think has worked well in your kind of life doing physio with Cai and what’s not worked well? And do you think anything will change as he gets bigger? What do you think?

I think it’s got better since I’ve understood it’s not… I think I really struggled with physio trying to almost think I had to have a plan every day of being, okay, today we are working on legs, we will do these exercise work on. And it was stressful if I’m honest. And then the next day it was meant to be arms and I was thinking too much about that. And I think it’s got a lot better when it’s trying to just make movements into everyday life. And now Kai’s got a bit older, he can tell me which bits he struggles with or which bits he’s finding easier, if he’s starting to find things harder. And you choose as well, don’t you, Cai?

So some days I’d be like, I want to work on my legs today. And mostly arms, legs are harder and we try to do it that way and try to do it more through fun. And I think that’s been easier for me. Since I sort of stopped putting the pressure on myself of, we have to do physio for this amount of time, it became a lot easier. And I don’t think I realized how much physio I was doing everyday without calling it physio just in everyday life.

Brilliant. That’s really, really helpful. Thank you so much. Is there anything else you want to say Cai? No? Okay. Well thanks ever so much for coming up and sharing your experience.

That was, Cai gave us a perfect example of how to make things fun. Physio can be boring, but we need to make it interesting. But what was really good is Kai set his own goal by something that he saw that he wanted to achieve.

And that’s not easy with the little ones, but when they’re a little bit older, you don’t have to work on everything but work on something that you want to get a benefit from. And I think that’s what we’re trying  to say. It’s very difficult to get play in a whole range of 0 to 17, but there is something for everybody.

So, any questions? Do you raise your hand for questions? I’m going solo, I’ll try and do both. Any questions? Come on, there must be a question about physio. Who’s going to kick us off? Thank you. I’m going to get my steps in.

Hello there. I was just wondering, do you find it easy to write this sort of functional play approach into like EHCPs, where they often want time, when’s it going to happen,how long is it going to happen, how many reps, that sort of thing?

Sorry, I didn’t hear you. Time into EHCPs, this approach, is it? It’s difficult, I think. I would always say start with PE and find a way that you can be involved in PE. And if the activity isn’t exactly right, then you make it right. So, you’d want your physio to go in and do a school visit. Whoever’s helping the child, show them what to do. Other things can be brought in. It’s easier in primary school to have some time on the floor, much more difficult in secondary school. But then that’s how you’ve got to look at how to incorporate. And what I hate is hearing that a secondary school child is in the library during PE time. Everybody else is getting a break from academic work. Everybody else is getting some movement and exercise. And children with SMA should be as well. And there’s always a way of making that happen.

One here has been submitted. Any good exercises for a just new 1-year-old? 1-year-old, just turned 1.

Oh, I think that’s the best group. Because all they want to do is play. So, you can do lots of rolling, lots of tummy time, sitting balance if they’re ready for that. Sitting, holding their hips if they’re not sitting independently, reaching for toys, getting them to reach out of the base, getting them to reach up for things. Lying on the back, reaching, kicking. Easiest age group, I think, actually, to work with. Because they want to play and explore, that’s their nature. And they haven’t quite got to the stage of, I don’t want to do physio. Hi.

Thank you so much for that, by the way. Just interested in the importance of massage, given that SMA well, my SMA child doesn’t have contractures, but I’m conscious that if he’s been standing all day during school time, you know, he might be tired or if he’s done some physio, it’s really difficult to understand how, you know, much relaxation he then needs. Do you need to then every day be focusing on massage to avoid any contractures or also them just feeling knackered? ’cause I just think that’s, you know, if I’ve done too much, I probably need to have a break or I need to have a massage.

Thank you. I mean, I can start. I think you’re absolutely right. There’s a real balance between exercise and activity and fatigue and rest and recovery. So, if a child is fatigued, then they do need to rest or if a young person or an adult is fatigued, we all need to rest.

I think massage can be a really comforting, pleasant time for a family member to do with a child. I think you’d go gentle. I think if I booked a massage, which I don’t because they often hurt, I would expect it to be deep tissue massage and I would come out feeling quite different. I think if you’re thinking about massage with a child with SMA then it would need to be gentle. It needs to be soft, it needs to be tolerable, and they need to enjoy it. So you can use some oils. I think it can be a really nice bonding time and it can be a fun time.

The other thing I’d think about is ensuring that the muscles you stretch, that you’re massaging are not being overstretched because overstretch can be a problem in SMA if you’re actually extra bendy, then you want to be careful with the joints that are a bit more mobile and maybe concentrate on the muscles where there’s possibly a bit, could be potentially a bit of tightness. But there’s nothing wrong with massage. It can be very comfortable and pleasant. It doesn’t take or doesn’t overtake or replace stretching if you’ve got some contractures, it’s a different type of movement. But again, it can be a nice thing to do and it can be part of rest and recuperation.

Yeah. I completely agree. And regarding the fatigue, I think it is really important to recognize that and have rest. I remember treating a child a few years ago who would have physio with a physiotherapist and then an hour off and then do an hour with mum. And I explained that would be like me going to the gym, going home for an hour and then going to the gym for an hour again, I wouldn’t do it. So, you’d need to take into account fatigue is a factor for everybody, but especially as in SMA and there’s indications there that you might say, oh, we want to do 10 of these, but actually five, it’s a struggle, stop. And you and you do something else.

Hi, I just remember on the previous slides, it said physio programmes, best physio programmes, and we’ve been talking about different types of things we can do. When you say that, are we just talking generally about physio or is that something we can look forward to as parents of children with SMA? Is that something neuromuscular centres are going to be offering? Are we going to be dependent on our community services for the physio programmes or are we still going o be reliant on private physiotherapy for it like Cai’s?

Do you mean the one with the tights? Yeah. So that’s all the things that we’d be looking at and wanting to address. I’d love to say it was going to be provided by neuromuscular centres, but it isn’t. Unfortunately, it’s just not going to happen. Certainly at Evelina, we’ve got a caseload of nearly 1000 patients, not all with SMA. So our role is to advise the parents on what to do, advise the community physios on what to do. But again, there’s not enough community physio.

But I think what we’re trying to say is physiotherapy doesn’t have to be a physiotherapist. Our role is more to guide you on what to do and show you that there are ways of making it fun by explaining to you what we’re aiming for, what we want to do.

But fine to have private physiotherapy. Nobody has a problem with that, but it’s expensive. But it’s more how you can incorporate it into every day. So our role is to say this is what you need to work on. But unfortunately, it’s not going to happen that somebody is going to be doing it.

Sorry, can I just have a follow-up on that? Because one of the things that we often get is parents wondering, how do I know what exercises I should be doing? How do I know that my child, because every child is different, they’re all impacted in a different way. And so we all know a lot of parents are looking at Instagram and saying, oh, that child’s the same age, therefore I should be doing that. And feeling really lost about what exercises there should be.

We know that Oxford, the team at Oxford, are doing the ACE SMA trial at the moment, which is really assessing the impact and feasibility of carers and parents doing physio at home. And that’s been great to understand and get that input. But outside of that, we don’t have input unless you pay for it. So it’s how, what that’s going to look like, how are we going to get the word out about the different exercises and make parents feel more empowered to do physio at home?

 

Thank you. I agree, it’s really challenging because as much as everybody should have a right to an individualized approach and that we would always seek to do that. I think there’s a couple of things. So, when you go to your neuromuscular centre or whoever you see, wherever you go to for your main care, there’s almost always a physio. In paediatrics, there’s almost always a physio in the clinic. And especially if you give them a heads up that you’re coming in and that you’ve got specific questions, say, I’d really like to talk to you about the physio that I could work with my child. Because even though we are a little bit bound up with assessment in physio clinics, especially the SMA reach clinics, because we are rightly collecting data to try to evidence the work around the drug therapies. But as physios, we want to treat children and young people as well. We want to be giving those programmes. So I think if you’ve got a specific question, there should always be time or perhaps a physio could arrange time afterwards.

The community physio, even though they’re few and far between, there should be a commitment from a community physio to review a physio programme and to go through it. Even if it’s happening in the school or nursery, they should be able to go through it with you to say, right, we’re working on sitting balance and these are three ways that you can do it. Or we’re working on reaching and these are the activities. It’s kind of getting your head around the principles behind the programme as much as the programme itself. Because from what Hannah conveyed was that it isn’t so much about doing an exercise. It’s about moving and reaching and being able to reach that across the table and be able to pick my drink up or put my arms through my clothes. So it’s kind of really a balance. But I can see it’s really challenging and we’re asking parentsto be physios as well as parents and that’s hard. And we recognise, but I think hopefully people, if you want to, it’s not all there for you to just cherry pick off the tree.Unfortunately, there’s not that amount of provision, but there will be specialist advice and it’s just about trying to focus in at the times when you really need it, I think.

I’m sorry if that doesn’t…

No, I agree. I think when you come to neuromuscular appointment, ask us, that’s what we’re there for. So we have to do the assessments, as Lindsey said, that’s important for the managed access. At Evelina, in between those six month standards of care appointments, we offer an appointment partway through just in physiotherapy just to look at orthotics and physiotherapy programme so that we can advise that way. And I think all centres do as we do and write to the community physiotherapists afterwards with, this has changed, that hasn’t changed, this is what you need to work on.

I’d just like to say there’s some excellent strength training going on in front of us here. Some very functional strength training. They don’t know they’re doing physio, but they are. Hi there.

 

Thank you very much for the presentation. How do we as parents know which physio approach to go for? So in my son’s case, we have the neuromuscular team at his specialist team, we have the local physio who’s seen weekly blocks. Very, very regularly at school. We have a private physio who was seeing weekly until he started school recently. And everyone’s got a different take on, so you can do KAFOs with this kind of walker or this kind of walker with just AFOs, and everyone agrees as well that it’s trying different muscles and things like that and it’s like, but what is best for our child? Who should we be following? Is it a bit of everything? Is it trying to get all of you to talk to each other, which no one has the time for? How do we know what’s best for our child?

Ideally, you want everybody to talk to each other. I would say as neuromuscular centres, I think we probably have the most experience. So part of our assessment is to advise on what orthotics and how to do things and we communicate with the community physiotherapists. We don’t always know if somebody’s having private physiotherapy and it’s much better if you tell us and if we say, what are they working on? And then we can contact them and go, that doesn’t work with what we’re suggesting or that’s not ideal in SMA. So the best way is communication, but it does have to be two-way because so often we don’t know if somebody’s having private physiotherapy and it’s really important that we do and that we can learn from each other.

And it works both ways. Somebody might be doing something in their private physiotherapy session that actually is working really well.And then we think, oh yes, that’s, you know, that’s a good thing to do. We do want you to carry on with that. But I think there has been awareness with community physiotherapy. There isn’t enough of it. And most of their caseload will be cerebral palsy and SMA is very different. So if somebody is teaching something in a different way, it may just be that they don’t know SMA that well. It can be the way they’re teaching transitions, for example, sitting to lying. We know how it works best in SMA, which is a different way to how it works in cerebral palsy. And I think most community physiotherapists are open to having that discussion with us and to have our advice. And we have networks. We have a Southeast network where we meet up with the community physiotherapists from the Southeast three times a year, and they bring case studies and ask us questions.

So education is really important. But I think it is important to remember most of their caseload will be cerebral palsy and that’s their experience. And their experience in that is certainly more than my experience in cerebral palsy nowadays. So I think they want to learn, but we do have to have that communication.

Thanks, Jennie. The only thing I’d say to that is that I agree with exactly what Jennie said, but there’s actually not always just one way to do things. There’s different ways. So it’s fine to have a slightly different approach. And even though obviously, it’d be good to be consistent, I think it’s easy to feel guilty and to worry that you’re not doing the best. I think if the child’s doing some activity, moving, they’re happy, they’re having fun, they’re enjoying it, it’s probably good physio, a good activity, and don’t worry so much about every, whether it’s exactly right, as long as they’re not getting hurt and it’s fun and they’re enjoying it and it kind of looks within normal ,if you know what I mean, then it’s probably okay. But yeah, getting them to talk to each other, I think would be a good idea to kind of say, right, what are we working on? Are we working on standing balance? Are we working on sitting? Or just so that, you know, yeah, it’s helpful for you to feel that you know what the principles they’re working on. So just have a chat and get them to talk to each other.

Hi, a bit touching on what has been talked about now, which is parents become a bit of physiotherapists. Isn’t there maybe kind of an area to look at kind of mini courses? I mean, obviously at the beginning, when the diagnosis comes in, is everything overwhelming, but now being like a year in, I feel like I would have loved to know a bit more of the progression of muscles. I mean, it was my first baby as well, so I didn’t know anything.

So it would be an area maybe to look at with SMA UK, with the chart as well? Yep. I think that is a good idea. The only problem is always remembering they might have the same diagnosis, but they’re all individual and they don’t all do the same things and they don’t all do the same things at the same age. But maybe that is something that SMA UK could consider. 100%, yeah, we’re down.

Any other questions to finish us off?

I’d quite like to know thoughts on intensive physiotherapy courses.

Oh, sorry. Okay? And then I’ll come to Laura. Your thoughts on intensive courses. I don’t know enough about them all individually. I know a lot of people do them. I hope that they are being individualised and I hope that they’re not so intensive that you’re getting fatigue by doing a huge amount in one day. That would be my concern. That said, if it’s, as Lindsey said, if it’s fun and they’re enjoying it, then great. But there are so many around there, I don’t know all the individual ones. I would just be concerned about the possibility of overdoing it and suffering from fatigue.

Thanks. Thank you. You might have just answered It actually. I’m a huge advocate for children learning via play. So I feel quite fortunate that with the whole physio play, just make it fun, I’m like a dog at a bone all day with her. But sometimes I do worry, should she be doing that? Is that too much in terms of overstretching and just exhausting her? So, is there any ways you can know whether you are doing too much in one specific action or movement or game, trying to make it too fun? I think it’s probably just a bit of self-doubt or guilt, like, should I? Shouldn’t I? It’s such a minefield.

I think with a young one, little and often. So when you’re doing a nappy change, you can do some lower limb things. You’re playing, you would play anyway with a mum with your baby. I think they’ll let you know if they’re tired and they’ve had enough, and be guided by that. You’re not pushing when they’re tired. It might be they’re tired doing one thing or they’re bored doing one thing and you do something else. Or maybe they’ve just had enough and you need to stop. I would trust yourself as a mum.

Okay. Thank you. Thank you. And thank you to Laura here, who is nanny Amy on TikTok and has brought us lots and lots of followers at SMA UK. Whoop, whoop.

Thank you so much. That was really informative. Yeah. Big clap please. Thank…