Ep37 Transport for All in 2024

1, 2, 3, 4. Hi everyone and a big welcome to the Living With SMA podcast. We talk about all things spinal muscular atrophy related, but topics discussed are not exclusively for individuals with SMA, so there should be something here for everyone. We also do things differently. For starters, our charity, SMA UK uses different hosts and everyone involved gets a final say in the creative process of making these episodes. We cut through the jargon and the content is accessible for everyone. All the stories are individual, and we are committed to sharing as many different perspectives as we can for our listeners. So if you're listening to this and have a burning desire to talk about a particular subject, then please reach out to us on our social media channels or send us a quick email. And remember, no topic is off the table. If there is something the SMA community wants to talk about, this is the place. We really hope you enjoy the podcast. And please do connect with our charity and share your comments online and let us know what you think, from all the team at SMA UK, thank you for listening. 3, 2, 1. Hello everyone and welcome back to another episode of the Living with SMA podcast. My name is Ross Lannon and I'm going to be your host for today. And today's subject is all about getting around and using public transport. And I think probably between us at some point in our lives, we have all probably had a good and a bad experience of public transport. So we're coming together today to talk about our experiences and just generally explore some of the options that are out there and available to us when it comes to getting around on public transport, particularly with the disability as well. So let's start things off with the introductions. Let's meet some of the team who we're going to be chatting with today. Ellie, can you give us a little introduction and let our listeners know who you are and where you are from, please? Hi, I'm Ellie. I'm from originally in southeast London, but I go to University at Wembley. Brilliant stuff. And Mr. Luis over to you? Yeah, so most people already know me, but those who don't, I'm Luis, I'm in the community services SMA UK. I have some other roles that I'm involved with, like a diversity and inclusion consultant, which means I use public transport quite regularly to travel across the whole in the UK. So yeah, really looking forward to being here today. Awesome. Okay. Well, I think probably the best place for us to start is to try and get a little bit of a grasp of how experienced we are individually when it comes to public transport, because I think probably between the three of us, we're going to cover a range of topics that we can discuss regarding this subject. I think for me personally, if I sort of start things off, I'll hold my hands up a bit. I'm not the most experienced, so I'm still learning, which I think is kind of good and bad in certain aspects because every time I use public transport I'm still surprised or I'm still learning new things along the way. I've been very fortunate enough that I've been a driver for the last 10 years, so I've been in that lucky position where I haven't had to rely on it quite as heavily, but there have been moments where I definitely have used it. So I think that's, just want to put it out there. That's where I stand or sit on that subject. Ellie, what's your general experience? Are you a regular user of public transport? Yes, sir. I moved to university in 2022, and that is when I started using public transport regularly. So before that I used the car mainly and just the railway when I moved to university then drive. So I had to rely heavily onto public transport, particularly the hand around and the railway. But that has been a bit of a learning experience that coming to university. There's been good days and bad days learning experiences. Yeah, you hear that quite a lot, don't you? The up and down, this is kind of the problem when it comes to the inconsistencies of public transport, which is probably what drives us all mad the most. Luis, what about yourself? You said that you've had quite the experience in the past. Yeah, I mean, so my roles that I do at the moment for quite that I've travelled all over the UK. And I guess it's a contrasting story because in where I'm from in South Africa, there isn't really infrastructure that caters to disabilities as well as we find here in the UK. So it's been a bit of a playground for me, but again, it's a learning experience because I'm still... Even though I use it regularly, I'm still learning new things and new ways of doing things and new avenues that we can pursue as people living with disability and times when you're stuck and don't know what to do. And other times when things just work really well and everything, it just falls into place as it should. So yeah it's... I guess it's creates an environment where I'm not afraid to use public transport because I know I have options. Yeah, it's almost sad, isn't it, that we have to really celebrate the wins because sometimes they're so rare when everything goes smoothly, you're like, oh, what a relief. That is such a win. Whereas actually for most people, that's just the everyday norm, isn't it, of they haven't got a worry about all those extra barriers that we as people with disabilities face. And I think that's why it makes this subject very important for a lot of us. And I think it's really important to note as well that the fact that public transport can have a massive impact on our daily lives because there's that negative assumption that people with disabilities don't... We don't go out, we don't socialize, we don't work. Whereas actually a lot of us do and public transport, we rely heavily on that, don't we Luis? We do. I think when... Some of us are not fortunate enough to have Motability vehicles, public transport is the only option we have for independent travelling. Unless we're relying on family, which also isn't ideal because it's our lives being messed up into their lives instead of us just being the person that we want to be and doing the things we want to do. So absolutely, I think it's, for me, it was really empowering the first time I used public transport and realising that, okay, I can do this. You're very daunted in the beginning when you're worrying about, oh, am I gonna get there on time or how does this work and who do I speak too. But actually, it's not as complicated as people think especially when you know what's available to help you plan and make sure everything goes according to plan. I mean there will always be variables and there will always be scenarios when things go wrong, but in principle, there is a way that it can go very smoothly. Yeah, let's not mention the strikes, shall we? No one will. Let's not. Just saying it's real. Yeah, I bet. So I think it's important that we kind of touch on this. There's lots of different modes, obviously, of public transport, and I think each mode of transport brings its own stories and positives and negatives. So I think it'd be nice just to touch on a few of those different modes. Ellie, you mentioned there, obviously, being based in and around London. So I presume in your, it's that familiarisation with the trains and the underground. Yeah. Is there any sort of experiences positives and negatives that you can share with us? Yeah. So I live in Wembley, which is a 15 minute route from the Jubilee Line. The Jubilee Line, majority is accessible, but there are a few stations that aren't. But I've lived here for like two years now, so it's quite relatable on where I can and can't go. My station is accessible, so that's perfect. But I recently went on the Elizabeth Line for the first time, and that's a new line, so I didn't know whether it would be very accessible. But, so I got on at Bond Street, and I went to, I can't remember the station, but it wasn't in London, it was outside of London. And they told me that it was all right, that someone would be there to help me get off. We got there, and there was no one there. So we waited for about, and no one came. So we were like, what do we do now, and we actually stopped. And the next stop was at Oxford. I didn't really end up in Oxford. And so, I had to be lifted off the train by five members of the cabinet, 'cause there was no other option. The train was about to leave. So, in that sense, there are a lot of negatives when people don't turn up and things like that. Yeah, and that in itself you sharing that story there, it's not only incredibly stressful, I imagine, but it's not the most dignified way you having to rely on people to lift your chair. And even that comes with the added risks of damage to your chair, which is a knock on effect to other problems. I don't think people realise how much of an impact it makes by just not being there to get you off the train. It just around but they don't realise. Yeah, definitely. And when it comes to sort of trains from my experience here in Cornwall it's definitely not as manic and hectic compared to the London Railway. But I think on a positive aspect there, from the little use of the trains, I have used, I recently used the Passenger Assistance app, which I actually found to be really helpful considering from when I'd last used a train, which was years before, this is quite a new sort of still fairly recent development. And I was actually really impressed because the journey I had sort of locally, it went really well, I booked my assistants and they were there ready and waiting with the ramps. And I was a bit like shocked and impressed with this because all those years ago, when I would have to book assistance, you'd have to book it 24 hours in advance, at least if you wanted a journey. Whereas now, yes, they still encourage you to give as much warning as possible, but being able to do it on the app definitely made it easier. Have you guys had experience with using the app as well? Yeah. Yeah? Yeah. I think it would be useful if it was on the tubes as well, but that's just on the railway. So, and I'm a football fan, so I travel the country for football, and it's definitely useful for that, that long running distance journeys, definitely more useful. Yeah. And Luis, when it comes to railway experiences from your end, is there anything you can add to that sort of topic? Yeah, I mean, very similar to what the both of you have shared. I mean, the Passenger Assistance app has been brilliant for me. And I think that it adds a lot of value to our experience. However, I think it comes down to people retrofitting our lives instead of integrating that into the railway systems. Why don't we have that built into a website where we're booking our tickets so that we don't have to go on three, four different platforms to plan our journey? People don't understand that's challenging for a lot of people and it can take a lot of time. But having said that, I think that it's really added a lot of value and probably made my travel a lot smoother. I do wish, like Ellie, that it included the underground stations, I think. I don't have enough fingers, toes, limbs and family member's, fingers, toes, and limbs to count how many times I've looked for a staff member on the tube lines to give me the, even the small ramp to cross the gap. And there's no one in sight. I just have to wing it and hope your wheel doesn't go skew and get stuck in the hole or... Taking that risk of going over the threshold. Yeah. And it's really, what I really like about the app is that real time updates. So rather than you arriving at the station and finding out that lift is out of order, you'll actually being updated with that beforehand so that you almost have... If it comes at the right time, you have that opportunity to retrofit or at least speak to a member of staff. I had to do that traveling to Manchester on the train I got a notification that the lift is out of order at one of the stations, and I had to change that. When they came post check tickets, I said, by the way, I've had the certification, can you check it? What do I need to do? And they could then go to the train manager and find out what do I actually have to do to retrofit my trip? And it meant that I had to go to Birmingham, Moor Street and then change there to get to Manchester. I think that it's a really brilliant piece of tech. I just, wish it was built into the platforms that we're using to buy our tickets. Yeah, that's a really good point actually. I, yeah, I wasn't aware that they gave those real time updates, which is really good. I like that. Missed it. Yeah. And I think for me as well as, I feel I am the novice when it comes to the public transport here. I'm in the process of planning a trip to London at the moment. I'm come... I'm going to London in the summer, and I kid you not, I have spent hours and hours researching, trying to find hotels that are nearby to underground stations and accessible in the area that I want to be in. And honestly, it has caused me so much stress and I can't even exaggerate the amount of time I've spent because I've genuinely lost count. And it just blew my mind because in my head as this little, southern boy, in the south of England, I always presume that London nowadays is, top notch when it comes to the accessibility. That's the assumption I made. We're in 2024 now and, I assume that the majority of these stations are step free and they've got all this great access. But actually doing my research, I was really surprised at how inaccessible it still was. And, I genuinely couldn't believe it. And I guess for you, Ellie, that is the everyday reality of what you are dealing with. Yeah. Literally. out of your way to back onto your journey. It's just people don't understand and then they're like it'll be fixed in two weeks. But two weeks is. I use it every day. So I have to out of my journey each way just to get to London. Yeah. And I suppose that leads us to the fact that, we shouldn't have to, but, I guess because we have to plan so much, it takes away that spontaneity that we have to have a backup plan, don't we? I guess that leads to another form of transport being an alternative backup plan potentially more expensive again, adding to pricing. But, taxis, Luis, when it comes to using taxis and black cabs and things like that. How have you found that? It's different from region to region, unfortunately if we talk about London, I find that quite easy to navigate. It's expensive, but it's at least accessible. I think. The power chair that I have, I've learned through trial and error that, if I get the newer black cabs that are the electric blacks, then I fit really well. And there's enough head room, there's enough space for me to get in it, it's a better ramp. I struggle a lot with the older cabs, I usually use GET, which is like Uber for black cabs and that allows me to actually choose the type of cab I want. And I don't even go for the accessible cabs, 'cause they accessible cabs usually are a Sprinter van, not a Sprinter van, a Mercedes, I think it's having or whatever the heck is called anyway, but it's a Mercedes van that pitches up. And the floor to roof height is not high enough for the power chair that I use. I don't actually book accessible. I just book the electric cabs, or they call it the Green cabs because I know the ramp's good, head height. And there's enough space for me to drive in and my PA to get in behind me and sit down on the chair beside me. When you talk about Leicester, that's a very challenging place to go because they only have vans and that means that my PA has to bend my head to the side really hard to fit into the cab, and then once you're in the cab, re adjust the chair with the headrest, make sure I'm comfortable and then undo it all just to get out again. So that's quite challenging. Manchester is pretty good though because Uber is quite good in Manchester. So they usually have rear loading taxis that you can order on Uber. And therefore, it's more accessible than having to try and figure out black cabs. I mean, there are black cabs, but they call it for in two between. So, I guess, again, it depends on the area, the region you're travelling in. I also know that there are some places that have no cabs and then they have to use the bus. So, yeah, that's kind of the experiences that I've had. Yeah. And I think, as well, like you said, again, a lot of the time, it does come down to that postcode lottery of the location of where you live. I know, coming from personal experience living in Cornwall, there's only one, off the top of my head, sort of well known taxi company that have accessible vehicles. And that is... It's not good when you're just relying on one taxi company. They have the monopoly. They have your business. They've got you regardless. And, yeah, it does kind of leave you high and dry at certain times because I know before, if I've had to use a taxi, for example, if my car is out of order, if I'm having any repairs or anything to do with the car, I'll have to get a taxi to work. And trying to book a taxi at specific times... Because a lot of the taxi companies locally here, they prioritise the school run and things like that. They use their accessible vehicles because they're bigger. They use them for the school run. So if you need to

00 PM

00 PM, you haven't got a hope in hell because they're prioritising. And when there's only one company, you just have to sit and wait, which is really not ideal at all. Yeah. I think that's brought on when you think about... Even in my area. So I live in Canvey Island, which is near Southend on Sea. And we have a taxi company in the area. And they have the big electric black cabs, but they don't have the licence to carry disabled passengers. So they have the accessibility, they have the ramp, they have the space, but they're not allowed to take me, unless I can self transfer onto the seat. So that's an option out of the window for me straight away because of the technicality. And you're kind of then forced to look at alternatives, like the bus or... I don't know if this is everywhere, but in our area, particularly in our borough, we have Community Transport, which is a volunteer organisation that you can pre book. And they help you get from point A to point B. And it's like a big Sprinter van with tie downs and

00

00. Because they are working off of the mentality that we don't work. So, therefore, if we are travelling, I guess like to go to the shops or go to the restaurant or go and visit the club or like a club for wheelchair

00 AM So, that's me stuck. And if you're thinking about the buses, I have a

00 AM. So if

00 in the morning to get to London for an 8 o'clock meeting, but I have to pay

00. Yeah, it defeats the object then if you're having that pass, isn't it? Frustrating. Yeah, what's the point? Yeah. Ellie, what's been your experience of the buses? Buses, I use them quite often in Wembley. I have a bus to go to... And I find them really easy to use. And I don't think everyone... So I have a bus pass, like Luis just mentioned, but I don't think it has a time limit on the buses. But on the railway,

00 AM. But, yeah, on the buses, you don't. And it's a bit different in Wembley. Wembley is quite busy. But the people are pretty good, and they the bus drivers always prioritise me, that's the route I'm using. If there's a lady in there, they'll ask them to move so I can get on, unless or the kids have to move so I can get on. They are pretty good in London. I've only had one bad experience. They ran a route that while I was on the back, it didn't turn around, so I had to be lifted off then. There's a common theme here. I think Ellie just likes being carried. I think that's what we're seeing here. When it comes to the buses, I mean, I used a bus a couple of months back now, and again, it was the first time I'd used it in quite a long time. And generally, I was quite impressed with the actual access onto the bus, the fact that the drivers could just get out and pull the ramp down. Sorry, Ellie, carry on. There's a difference in London it's all electric. Right. They just hang out the side. You just ask them to create out of it, hung out the side, and then it's all electric. That's cool. I guess again, it comes down to there's pros and cons with that. I quite like the physical aspect of them pulling a ramp down because it doesn't almost matter what height pavement you're at then, or there's always the risk of the suspension. Electric's not working, you've got a physical ramp, put it out, done and dusted. Well, it's probably a little bit more reliable, however, it does involve obviously the bus driver having to get off their seat, which is, again, it comes down to bus driver's discretion and I think, yeah, the experience I had recently with the bus was, it was really positive actually. I really was impressed with, the general accessibility onto it. My only bugbear is the fact that there is generally only one wheelchair space on a bus, which again, like you said Ellie, it comes back to that battle with the buggies or if there's already a wheelchair user on the bus, you're having to wait potentially another 20, 30 minutes for another bus. It could be cold, it could be raining. That's really not... It's not fair is it considering one space. And that even if you're travelling with friends, you're all narrow in the back together. So you have to lifted out and very separately and that is not really fair. No, it's not. And Luis you mentioned about your bus pass earlier. A lot of public transport doesn't offer, your complimentary carer tickets or anything unless you've got a specific disabled person's rail card or the general tickets, they don't offer the carer complimentary, which again provides another barrier for a lot of people because it's that added expense, isn't it? It is. I think, it's really hard, when you think about PA tickets and when you're thinking about airlines, I can understand the argument. But if I were to talk about my local bus, if my PA travels with me on a return trip, that's two pound 40, is that really gonna break the bank for the bus provider? I don't think so. No. It's not like I'm using that bus every, every day six times a day. No. You think little simple changes like that would actually make a huge difference to individuals out there. And I think yeah... When it comes to actually making a call to action here, this is one of the things that I would absolutely recommend. There's these complimentary carer tickets. If we can get complimentary carer tickets to concerts and cinemas and theatres, how do they expect you to get to these venues, when you are requesting help if they can't provide that on the transport as well? I totally agree. I think, I mean, it's nice that we get a discount on our PA ticket if we have a rail card, but that only applies if you're getting benefits. So if you are not on benefits, you don't get a rail card. It's just another hurdle. So if you think about people who are travelling to this country for tourist purposes, they have to pay full price even though they have a disability. I lived here, I had to wait a year, sorry, had to wait two years so I was eligible for my personal independence payment. And only then once I had got to that was I eligible for my rail code. So for two years I paid full price for me and my PA. Wow. There's so many rules and hidden things that, a lot of us aren't even aware of. It is crazy. I think probably leading onto one of the final modes of transport is, we talk about using our cars and our vehicles and that is a nice opportunity just to mention the Motability Scheme, because that is an option available that people can explore if they are receiving that high level of mobility benefit. I know from personal experience, the Motability Scheme absolutely changed my life. And that's not even an exaggeration, without the support of that scheme, I would never have been able to afford the adaptions on a vehicle and yeah, without my vehicle, it just gives me so much independence having that vehicle now that I can independently, go to work and socialise in certain situations as well. Yeah, Motability is definitely an option for certain people as well. Luis, I know you've only recently joined the scheme, haven't you? Yeah, so November last year I got my vehicle and it has absolutely they've changed my life completely it means I'm not reliant on heavy planning anymore. The only qualifying criteria I have is a PA that has a driver's license. If I don't have, then I just switch to the default of plan A, B, and C to get from point A to point B with public transport. And when I do have a PA with a driver's license, it's essentially we're leaving at this time, we'll arrive at that time and we'll come back at this time it's so much easier. I've left my house a lot more than what I used to. I now go out every weekend, to go do something. It means that I can travel to clients rather than rely on cabs and buses and end up being late because this went wrong or that went wrong. So it has been a really liberating experience but again, it's dependent on whether what PA is working on the date. 'Cause not all my PAs have a driver's license yet. Yeah, it's definitely less stressful sort of having that personal mode of transport and having that public transport as your backup. We mentioned the backups earlier, instead of having public transport as your primary source of transport, that takes a little bit of the pressure off. Ellie, what about yourself? If you had any experience with the Motability Scheme? Yeah so I have high experience around, so I have a adapted car. I don't drive it myself, so I do rely on having carers that drive, and only two of my carers drive, so I made the decision to leave my car at home and just rely on public transport university, but it's definitely a lot easier than to have a car, and not have to plan your life around public transport. So I definitely do miss it. But, now I'm used to public transport. It has helped me in ways cars don't. Like, to get to Manchester it takes six hours to drive. And, whereas, on the train it's like three hours. So I prefer to get the train. It's less time in my chair, and it's just easier. So, yeah, it's pros and cons of cars. Yeah, and I think that's the beauty of that. There is there is no right and wrong. Like we said at the start of this chat, we're all gonna have good and bad experience and it probably is that inconsistency that makes us frustrated at times because it's not... Public transport in general is not one of those things that we can just have a hundred percent faith and confidence in all the time, like a lot of able bodied people potentially can do, apart from obviously, the general delays and cancellations that affect everybody. But yeah, I think it just comes back to the fact that as people with disabilities, we do have to plan a little bit extra harder. We have to really plan our journeys. It does take away a bit of the spontaneity. And also it comes to the, we have to be in the right mindset, don't we Luis? Absolutely. I think there are many trips that I can say I wasn't in the right mindset. And it shows when I look at the journey I ended up choosing in and the way that I got there, and it was more effort than what it was worth than just spending that little bit extra time on focusing on what's the best route, is it accessible? How far away am I gonna be from my destination when I get there? Because it's all dependent. So if I'm within walking distance, then great, I don't have to use multiple modes of transport, I'm just using the train, but most of the time I'm having to do a train and then catch a cab to the destination because there isn't an accessible station close to my destination, and then on return it's the same thing, cab to the station, then take the train from there to where I am at home. So it is important to have the right mindset and I guess, I know that people are going to feel very, very I guess frustrated and anxious about whether they should or shouldn't be using public transport and it's all about timing. So because I don't like peak hour because people's bums are usually in my face because that's the height that I sit. I choose to wake up earlier and travel earlier. But I know some people won't like that, but for me,

00. And then

00 to make up my hours. It doesn't make

00. I get to

30 and I'm ready to go. Have a coffee, have a breakfast, check my emails, make sure everything's done, move on to my client, do my work, and come home. And that works for me, so I think having the right mindset will allow people to just find what works for them and adapt their start and end of their journey. Yeah, and I think I totally appreciate what you're saying there. I think both mine and

00 were like nah, nah, I'm out. No thanks. But again, it comes back to everybody has got their own system, our... Everyone's bodies are different. Everyone's mindset is different. And it comes down to finding what works for you. And I think this has been the nice thing about this chat today is that this hasn't been a bashing of public transport because, Ellie, you've said in certain situations, you prefer the public transport in certain timings and certain locations, which is nice. Can I just mention two more things? Of course. That might be helpful for wheelchair users. When I'm planning my journeys, I tend to use Google Maps. 'Cause they have an option as wheelchair accessible, and it tells you the routes to take, so you haven't got to do it all manually. But sometimes, it's not 100% up to your route. That's useful. And the other thing is, I'm not sure if this is just a random but If that is a lift broken, TFL offer a complementary taxi drivers to get you to a nearest train station and just take you to the destination. So they don't have to rely on finding none of the routes out of your way. There is definitely options they help with. That's really helpful to know. Thank you for sharing that. And I presume that TFL would, would find that taxi in advance, or would you have to claim it back? There's two options. They either print it for you, which is taxi, yeah. Or, you print it and then send them your receipt, through email, and then they'll refund you. Brilliant. So that's a really good point, Ellie. That happened to me when I was travelling to Leicester one time. I ended up at a station that didn't have a lift to get me to the other platform. So they booked a cab for me and I didn't have to pay for it. But I've also heard from other community members and from other peers who have disabilities that sometimes stations just shrug their shoulders and say, Oh, we don't know what to do because they know that most people don't know that they are obligated to book a cab to get you to where you need to go. So I think that that was a really important thing to share because we need to know our rights as wheelchair users and people with disabilities and they a legal obligation to get us to where we need to go if their infrastructure is not working properly. I forget when that happens, I just book a taxi and then email them and say this is the ride. Send them a screenshot of a bill that says you have to pay and then they have to pay. Yep. Brilliant. No, I think that's really helpful. Thank you for sharing that point and that advice with us. That's brilliant. I want to just sort of end on a final note here, a bit of a call to action and almost thinking about our dream public transport mode here. If we could live in a world where we could make some improvements, I just want to come to each of you and sort of what would be your priority improvement for any mode of transport. For example, for me, I think the two most important things, for me would be to have complimentary carer tickets on all modes of transport and when it comes to buses having extra wheelchair spaces, I think those are my main priorities that I would like to see changed. So if there's any big transport bosses out there listening or counsellors, whoever's involved in those design and planning, that's my wish that I would like. Ellie, what would your final wish be? I'd say I really dream around what you said different. On the underground there are some stations that have that this step, but my chair doesn't go up step. There's that so easy to fix. You need to get the get a small ramp. Like London Bridge for instance, they have a permanent ramp in place, so it's just there all the time and drive up there then you're on the train, but most stations can't do that, but choose not to. That would be my suggestion. That's a great suggestion. And Luis. Yeah, that is before I want Ross your idea about complimentary tickets for our PAs. I don't know if you're aware, but in Europe they've just passed something that airlines are going to look at doing the same thing. Unfortunately, it's only within Europe, unfortunately, but that is a word advice. Because it sets the precedent and hopefully the other airlines will pick up that. So I just thought I would answer that quickly. Brilliant. For me, very similar to Ellie, I think what might be a really quick one is not really relying on a permanent ramp on the platform, but rather having the ramps like you referred to in the bus that falls out because that means that all they have to do is make a cavity in the door where we go in with a ramp that can fold up and if we have a PA, PA can do it, so they won't even need a staff member to bring a ramp for us. I think that would be a really quick word and something that's really easily achievable. But I think systemically I would like to see a transport app that rules them all. So one place where we can go to book any mode of transport that has all of our information in it so that we don't have to go from platform to platform to platform trying to plan and inform people of what we need when we're on our way.. So the first time I went to Manchester I wasn't aware of the app and the people that work there just expected me to know. it would be easier to know. Exactly. It comes down to awareness again and marketing and everything of getting the word out there, isn't it? But hey, we are moving in the right direction slowly but surely. I think if we look back to 10, 20 years ago, we are definitely in the right direction. Yes, it's still frustrating at times and sometimes it's not moving quite fast enough, however, it's going the right way, so we'll take that. Guys, I just want to say a massive thank you to you both for coming on the podcast today and sharing your personal experiences, and advice to our listeners as well. I'm sure it's been very helpful and again, to anybody at home listening, if you've got anything that you want to share regarding this subject, please do get involved in the socials or you can comment through SMA UK as well and share your story. But yeah, thank you so much for listening today. We hope you've enjoyed this and found it helpful and we will see you again for another episode very soon. Goodbye guys. You've been listening to the Living with SMA podcast. We hope you can join us again next time, but in the meantime, don't forget to like and subscribe so you don't miss an episode. You can find out more on our website @smauk.org.uk.