Living With SMA

18 - Part 2: You've Got a Friend in Me

July 21, 2022 Spinal Muscular Atrophy UK (SMA UK)
Living With SMA
18 - Part 2: You've Got a Friend in Me
Show Notes Transcript

Welcome to the Living With SMA Podcast. 

Today in part 2 of this episode, Ross Lannon, Luis Canto E Castro, Connor Thompson and Lauren Townsend talk about setting boundaries with your PA, the relationship process, the skills needed to become a PA and the importance of empathy and compassion.

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 and 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 two of You've Got A Friend In Me. In part one, we talked about the experience of having your very first carer, we heard from Lauren, Connor's PA who shared her perspective and talked about recruitment. Today, we'll be talking about setting boundaries with your PA, the relationship process, the skills needed to become a PA and the importance of empathy and compassion. Talking of boundaries, Luis 16 PA, a lot of it comes down to consistency, time and setting those boundaries almost quite early on. From my personal opinion, I sort of have boundaries with my PAs in the sense of, they know that I'm quite a social, but also quite private person. So if they know I'm having an evening with my friends, they know I like to be left alone and they'll keep themselves back away in another room or give me some privacy which is nice. Luis what can you add to that in terms of boundaries with your PA? Really it's important that they understand what you're expecting from them. And I think we're in a position where we're relying on someone else. So for them to understand when we do want to be left alone, and when we need to be left alone, it is important. I work from home and, I'm in meetings maybe majority of my day. And if you have a carer that's coming in and asking you questions or coming in and disturbing you in the middle of a meeting, it doesn't really work. So by setting those boundaries, they understand that from the beginning. But I also think care is a lot about a give and take relationship between us and our carers. I have to be able to accommodate them when I can and vice versa, because otherwise it doesn't work. It's not how relationships are built. Relationships are never a one way street. It's always a two way street. And whilst most people won't agree with that because I've been challenged on that ideology before, I have found that I have far more rewarding relationships with PAs or carers because of that kind of mentality. And even though that person is here for me, they're human, they have their own good days and bad days, they have their own family commitments. So you have to be able to accommodate for that as well. That's a very good point. Yeah. And Connor, sort of coming to you, I wanna focus on the positive relationships that we have here. What would you say is the best thing about having PAs? How has it enhanced your life? It's all about enablement and proximity and not only the client, but both client and PA in the relationship. So yes, one day it might be a chill day, maybe the energy levels are low and then the next day might be, oh! Let's go for a meal with some friends or a drink. And it's all about facilitating each other to achieve whatever task you're trying to do. So for Lauren, it might be, if we're going to the pub, maybe check the road or see what the pavements are like. And for me it's all about making Lauren feel comfortable in that scenario because the more comfortable Lauren is the better quality of care is provided. Absolutely. And it is a big thing. I think it's important that we should note that it's a big thing letting somebody into your personal home, into your personal space. And I think just sort of touching back briefly on the process that it takes to meet a new carer or the recruitment side of it. What skills or what skills do you think are involved in becoming a carer? I'm gonna throw this one to you Lauren, because I know often you hear of stories of people who maybe go to a job center and they're looking for any old job. And then you hear talk of... I'll just get a job in care, which as a disabled person, that's very frustrating because although you may not need certain skills or qualifications to get a job in care, I think it takes a certain person to be able to survive the job. So what's your thoughts on what it takes to be a carer? Yeah, see, I would say I feel the same really.'Cause obviously, to me, it's not just a job. It's obviously you're looking after somebody's livelihood and obviously it's their family as well. So yeah, I'm sure as well when people just think that care is just the easiest option, but obviously you need to be someone with a bit of empathy, putting yourself in their shoes. And that's the same, like Connor was saying that if he wants to go to the pub and I don't intervent or anything if he sits on the next table, obviously in the distance and that 'cause I appreciate, obviously, he's a young lad that obviously wants his own independence as well, but I'm there if he needs me for anything. So, gotta have a bit of respect and just a kind heart just to make sure that you can see yourself on the other foot as well. If you treat somebody the way you would like to be treated, then that's the best qualification I think really. Yeah. No, you couldn't have put it better. And I think we all know that Connor obviously likes going to the pub. I think that's been made pretty clear. Luis, what about yourself? Other than providing care, what things has a PA enabled you to do? You got any cool stories for us? Before I answer the next question, I want to touch on what Lauren said. I think that it's very important to highlight the word that she used which is empathy. I am a firm believer that in any recruitment process for the care industry, that people need to be assessed for empathy and for compassion. I think the challenge that we're facing is, I sometimes have better care from someone who's never done it before, because they are empathetic and compassionate compared to someone who's been doing this for 15 years and are just about getting as many calls done in a day as possible so they can make their money and go home early as if they worked the full shift. So I think that is highlighting... Some of the experiences I've had since being in the UK now have been very hit and miss. And again carers who have zero experience have offered me a better quality and standard of care because they care about their job or they care about the impact that it's making for me. So, a great way to highlight that would be to then answer the question that you just asked me, which would be talking about some of the carers that I have with me on a consistent basis right now, which is a lady called Kim who is semi retired and she's only here three days a week. But Kim even though she's far older than I am we just get along like a house on fire and we have banter, we go places locally. It's really difficult to get out of my house 'cause I don't have an adapted home yet. So it's quite a tedious process going in and outside, I only go out if I have to. And she'll walk with me to go cut my hair at the barber or go to the pharmacy to get my medication, or if I just wanna go for a walk, she would do that in a heartbeat. I have... I did have a very young carer called Phoebe who's 19 years old. And the first time I was introduced to her, my immediate thought was, how is this young lady gonna actually take care of me? Because this is not an easy job. And after a couple of months I had to eat my words and I even apologized to her because the standard of care that she delivered was just phenomenal. And we did on... Like we're family and Phoebe has actually given me an opportunity to go to work events for the whole day. So Phoebe normally only does afternoons, but she came in especially at six thirty in the morning so we could catch a train to London, spend the day at the London ExCel at the work conference, come back and then do it all again the next day. It's those kind of amazing experiences that they allow you to have that you wouldn't be able to do without care. Kim is now coming with me not next week, but the week after on a work trip. I have to go to Birmingham for sales training and Kim coming with is allowing my partner, who's driving to be less stressed about having to drive all the way, take care of me throughout the day, get me dressed and washed and all that stuff for every day that I'm going to training, which is three days. So I don't think people sometimes understand the independence that we're given by having someone commit their time to our lives and help us achieve things. Phoebe and I have a blast when we go places because Phoebe is absolutely terrified of lifts. So what she has to do is put me in the lift, press the button, run up the stairs and meet me when it opens, because she's just... She has a serious fear of lifts. And unfortunately there's been two occasions where she had to go in with me and you can just see the anxiety on her face. So I don't mind, I know that nothing's gonna happen in the 30 seconds that it takes me to get to the next floor, so she's happy to run up the stairs to meet me, that's all good with me. But I think a funny story would be, when we went to the London ExCel event last year, we were on the way home and she put me in the lift and forgot to press the button and started running downstairs and the doors closed and the lift is still not moving. She got to the bottom and realized that I wasn't there. She's like, oh my God, I've lost him, and then she thought, oh wait, let me press the button and see, and then obviously, the lift went down and she could meet me at the bottom. So that was quite funny, but I think the main point that I'm trying to make is that, having a relationship that is mutually beneficial, not just because she's earning money for taking care of me, but because it's rewarding for her as much as it is for me, allows you to enjoy experiences like that, where you go out and you say random things about people when you have people watching and you can have a laugh about it and you can go do things that you wouldn't be able to do without your partner or family member that's with you. And so this really allows you to live as much of an independent life as possible. I'm still very limited because the care company is very policy orientated so there are a lot of things that they can't do with me. So we can't go on holiday together, even if I could afford to pay for their care, it's not allowed. And that's a major impact on me because is it really a holiday for my partner if she's doing my care? No it's not. So what I'm now forced to do is to get an agency care to come in, who doesn't know my care from a bar of soap and has to not provide some kind of care that's gonna be adequate while we're away. So it's challenging. Yeah. No it's very, very challenging and I think you mentioned some really great things there, and it's sort of continuing on the fact that what we're saying here is the fact that PAs are not just for care, you can really build a fun and social friendship out of it as well. Connor coming back to you, is that... This is your chance by the way to really throw Lauren under the bus and say something to shock her. Is there anything... Is there anything that you have yet to achieve that you really want to do that a PA can potentially support you with? So you could say, do you want Lauren to go skydiving with you or something? I feel very similar to Luis like I turn 21 in a couple of months in September it'll be. So we was looking at kind of holidays and what activities we can do and there's a lot of boundaries and policies on why certain things can't be done that really are breakable barriers. There's definitely ways around them that doesn't harm or show any kind of negative impact on anyone. So we're constantly looking at improvement on kind of travel and holiday and that kind of stuff going forward, because I've not been abroad since I was eight years old, purely for kind of travel and care reasons. So if there's one thing that I would like to do objectively speaking going forward, that will definitely be travel more, a lot more. That sounds good to me. I think we all need a bit of sunshine to be fair. Don't we? 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