Living With SMA

18 - Part 1: You've Got a Friend in Me

July 20, 2022 Spinal Muscular Atrophy UK (SMA UK)
Living With SMA
18 - Part 1: You've Got a Friend in Me
Show Notes Transcript

Welcome to the Living With SMA Podcast. 

In this latest 3 part episode, Ross Lannon, Luis Canto E Castro, Connor Thompson and Lauren Townsend have a very intimate conversation, talking about the positive side of care and the benefits that both the carer and the disabled individual can get from this relationship.

Watch this episode on our YouTube channel here.

Each of our guests today shares their own personal views and individual stories.

You can contact SMA UK on the following social media platforms ⬇️⬇️

If you do have any questions for Ross, Luis, Connor, Lauren and the team or would like to participate in any of our podcasts please email

Living With SMA - 'You've Got a Friend in Me' disclaimer:
The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or employees.  All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK.  The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.

Hi there and welcome to the Living With SMA Podcast. We're here to have conversations about living with spinal muscular atrophy. Throughout this podcast, we will be covering lots of different topics, from preparing for university, getting the most from your personal budget, sex and relationships, and lots, lots more. So we invite different hosts from across the SMA community to come together here. We want to answer your questions, provide you with useful tips and recommendations and also share personal stories. So please do reach out and connect with us here at the Charity SMA UK. Thank you for listening and we hope you find the podcast useful. Welcome to part one of You 've Got a Friend in Me. Today we have four people involved in this discussion where we talk about the two sides of the story, the experience of having your very first carer, the perspective from a PA, and the importance of being involved in the recruitment process when choosing your carer or PA. Hello everybody, and welcome to a brand new episode of the Living with SMA podcast. We have another exciting episode for you here today and we are joined by some great company. I think we're in good hands today. So, before I sort of kick off and explain what today's episode is gonna be about, I think we'll have a little introduction to each of us. If I kick things off and just let you know, my name is Ross Lannon, I'm a disability and lifestyle blogger and presenter, and I have spinal muscular atrophy myself. I'll hand over now to you, Luis. Thank you. Hi everyone. I'm Luis. I have SMA as well, I am 36 at the moment and I freelance here and there and I am also a business development executive for a diversity and inclusion consultancy. Amazing. Connor. Hello, I'm Connor. I'm 20 years old. I'm an art student. I also freelance a bit of my art work and I also live with SMA. And Lauren. I'm Lauren, I'm one of Connor's carers. Amazing, lovely. Well, just to let everybody know at home who is watching today what the aim of today's podcast episode is gonna be about. We're gonna be following on from a previous episode where discussions were already had by Luis, Michaela and Katy. They did a fantastic job about... We were talking about PAs and how the fact that PAs are not just for care, but we're gonna have a little spin on things today, because obviously we are joined by Lauren who is a PA herself to Connor, and we're just gonna expand a little bit on that chat and talk about the positive side of care and the benefits that both the carer and the disabled individual can get from this relationship. And it's... We're gonna be looking at the importance of that relationship, and yeah, we think it's important to have a positive outlook on this because there is a lot of negativity out there when it comes to disabilities and the healthcare sector. To kick things off, I think it will be a good place to start right back at the very beginning and find out each of your stories. Luis, if I start with you in the sense of when you first had your very first carer, what do you remember feeling and sort of that acceptance of needing help? That's a very good question. For me it was really, probably around the age of 16 that my parents were considering bringing in someone to come and help. I was taken out of school by my stepfather and was based at home all the time. And obviously him and my mum had a job that they had to do. So we got a few people here and there and it never really stuck; it wasn't really a job that I think that they were made for, if that's the right term. But when it really started adding value to my life was at the age of 19 when I was introduced to Leonard, who had never done care before; he was a Malawian gentleman who came to South Africa to try and find job opportunities for the betterment of his family, and he was mainly doing housekeeping and treating and gardening jobs. And when he was asked would he be interested, he said he's got no problem, he'll give it a go. And we really just took to each other like, I don't know, grilled cheese on bread. He really flourished and we built such a real rich relationship. Before I came to the UK, he looked after me over 15 years and he named his firstborn son after me. That's the kind of relationship that we built. And unfortunately, coming to the UK, I've not been able to bring him with me; because of his age, he doesn't qualify for a work permit. And I've had to say goodbye to that and have to start again here in the UK. So that's been a little bit challenging. I like that, yeah. Well, wow, what a amazing first experience as well of accepting care and having such a strong relationship from the start. Connor, what about yourself? Do you remember your very first PA? I would've been around the age of seven, possibly eight, somewhere in between, so, very young. And that particular time was all about assisting the parents and family members on kind of more on a night routine. And then as my health condition progressed, we kind of moved it to more of a day routine. So kind of helping with school activities, that kind of stuff. So maybe homework, maybe going into school. And then around the age of eight and half, I met a guy who was called Scott, who is basically Luis' Leonard, but in my particular scenario, and yeah, we had him for over 12 years which is really impressive and became, yeah, became a family member, a lot more than just a carer. Love that. That's so nice to hear because... And to be honest, that's not often an uncommon thing, you know, the job retention within care almost has a bad reputation, but actually behind the scenes, a lot of people do have a lot of long time, long term carers, from my own personal opinion. I was quite late joining care because I was always very, almost against the idea. I put up quite a fight when I... When my parents sort of, that all came about. I was 21 when I moved out out from home, so that was the first time that I had to accept help from somebody who wasn't my family. So, already sort of an adult as such, it was quite a hard adjustment to accept help at a young age from a stranger. But now like, sort of looking back, you think, why didn't you do this sooner, because now it's opened up so many opportunities and increased confidence and talking about the longevity of carers, my current team. Yeah, I've had the same team for nearly seven years now and it's amazing, really. So it's nice to hear that we've all had those long term connections. Lauren, coming to you from an alternate point of view, what made you want to join the care sector? So I've always wanted to do something where you've helped others, and obviously it came with joining NHS to become a carer, and I thought it was something different, because obviously nursery nursing was great, but I think I'd reached the end of the career and wanted something different. So yeah, I just jumped ship and went with being a carer. I didn't know whether I'd be able to do it if I'm honest at first, but they said like give it six months and see how we go and 'cause obviously it's a little medical as well, isn't it, if you feel comfortable in yourself being able to do it and I can just always remember one of the nurses saying that just give yourself six months and see how you go. 'Cause originally I did look after another child before I met Connor, so it just went from there really. And I think I just loved the job, loved meeting different people, and that was it really. I had more clients and obviously met Connor. It makes you feel part of the family. I like it knowing that I treat obviously Connor as a normal young man and I don't see him with a disability or anything. I'm just there to have a laugh with him, have fun with him and stuff. Absolutely. So, yeah. And Connor, coming back to you, obviously you were part of the process of obviously I presume selecting Lauren for the job. How important is it for us to be involved in the recruitment process and in choosing our helpers? Yeah, it's really important that as a client on the receiving end of a service that your input is valued because you as the client are gonna understand what you're looking for in a carer, and you will sense straight away that kind of bond or connection with a possible member of staff and you as a client know kind of instinctively what you're looking for, and no one can really voice that for you as accurate as yourself. It's very true. And Luis coming to you, sort of continuing on the lines of recruitment of carers and the interview process and things like that, what would you say is your view on that? Well, I think it's crucial. I unfortunately don't have that luxury. I call it a luxury because I don't have that available to me. The care company designates someone and I then have to trial it and see how the relationship goes. So when I first originally got given hours for care, it was very minimal and I was becoming very reliant on my partner in between the hours that were given to me and it wasn't really working. So I had to push for more, and we've got my package after having someone with me Monday to Friday throughout the day. And I... For the people... For those hours I have had close to 10 different people in my home for that. And at the moment there's only three that are really consistent. And there are others that have to try and cover when people are on leave or ill. So I'm not involved in the recruitment. I don't get a say on who gets put here until I've met them and I spend time with them. So I can then approach the company and say, look, I don't think this is working. But then the challenge is who do they put here if that's not working? So a change takes a long time to happen. When incidents also happen and you are at the point where you are about to refuse entry to... Getting that person off the rota, it takes time; it's not something that can just be organized in the drop of a hat, which is really challenging. And I think it's very important that we're involved in that process. Because as Connor said, we're able to not only gauge the person in the way that they answer the questions, but you are there to explain what you need. I'm a very firm believer that a care plan in a file or a mobile device does not give you a true reflection on you as an individual. It's not very human centered. It's very critical and policy orientated and that detracts a lot and also sometimes portrays the wrong picture. So I've had carers coming here expecting that I am the most complex person they've ever handled, that they've even doubted whether they can do my call, and then they come in the door and see who I am, and they're like, wow, this is actually a lot easier than I thought it was gonna be. So it just creates a lot of misperception, I think, and that can all be avoided if we were included in that process, I think. It's different when you're dealing with companies who don't understand that, and they talk about it's company policy, and we can't involve the service users with the interviews, because at the end of the day, they're not only gonna be there for you, they're gonna be seeing other service users as well. Yeah. And I think it's fair to say, there's almost two sides to this story in the sense of us as the client, it's, there's a lot of anxiety about having a new person or a stranger come in to provide personal care. But also on the other hand, from the carer's point of view, this is where we can go to you, Lauren. What's it like on, from your point of view of when you find out who you are gonna be working with somebody new for the first time, what goes through your mind at that stage? Yeah, I mean, see, it's cool for a few times to go to different clients, but, I like to stay where I am and stick to what I know really. 'Cause obviously with some people it's hard to take a long time to understand things. And I think it for me and Connor, we got off to a slow start, and I think it was more him learning about me respecting him. Like I said that if obviously we wasn't gonna get along, then obviously there's no point in upsetting him or me. But as time's gone on and we've learned more about each other and got to know each other, obviously that's made it better, which is why I think learn about people is crucial, really. But obviously now, we get on really, really well. And that's... At first, it was a little bit hard because I think you are told a bit different to what you think it is. So obviously other people involved, not just Connor. So yeah, what's the question again? Yeah, no, that... You've answered that lovely. And throwing over to you, Connor, what is it about the relationship with Lauren that made it work for you? 'Cause we all know we all have different views on what we want out of the relationship with our PAs. What was it about Lauren that made your connection work in your home life? Yeah, so originally when I met Lauren, I was around the age of 14 and kind of just starting to engage a lot more in the care industry, so we was both kind learning our roles and what our responsibilities are at that time. So it was definitely a bit bumpy to start off with from both point of views. And then we kind of came in agreement a bit later on, a couple of months later, on kind of what each of those roles are. And then from then, yeah, it's worked perfectly for, what, almost seven years now. Yeah. Amazing. Yeah. I think Connor accepted me and obviously, like we say, we learnt about each other. Obviously if he's unwell, then obviously I'd go above and beyond what I'm meant to do, 'cause that's just obviously in the nature, and I think, obviously, hopefully trusts me, because obviously, like I say, you get a part of the furniture. He's come to me wedding and we've been out together to watch football on the telly at the pub and things like that. So, yeah, I think we've got quite a good relationship, obviously still within the boundaries of work. You've been listening to the Living with SMA podcast. We hope you can join us again next time. But in the meantime, please don't forget to like and subscribe so you don't miss an episode. You can find out more on our website at