Living With SMA
Living With SMA
Care One Year On (PAs Are Not Just for Care Part 2)
Welcome to the latest episode of our podcast, where we take an unflinching look at the state of care in the UK today.
As one of the wealthiest countries in the world, the UK has a moral obligation to provide high-quality care for all its citizens, particularly those who are vulnerable or in need. But as we'll discover in this episode, the reality is far from ideal.
We'll be delving deep into the complex web of challenges facing the care system, from chronic underfunding to understaffing and inadequate training. We'll hear from Ross Lannon, Luis Canto E Castro, Michaela Hollywood, and Katy Etherington who are directly impacted by the system, as we explore the causes and consequences of the current state of care in the UK.
But we'll also be shining a light on the inspiring efforts of individuals and organizations who are working tirelessly to improve care for all. From innovative new technologies to community-based initiatives, there are glimmers of hope and progress amidst the challenges.
So if you're ready to confront the harsh realities of the state of care in the UK, while also discovering the promising developments and solutions emerging, then join us for this crucial and thought-provoking episode.
Tune in now and let's start a conversation about how we can work together to ensure that every person in the UK receives the care they deserve.
*THIS PODCAST IS NOT JUST FOR PEOPLE WITH SMA*
This content is not solely for the SMA Community. We hope this discussion will be helpful to everyone. ❤️
You can contact SMA UK on the following social media platforms ⬇️⬇️
▶ | INSTAGRAM: https://www.instagram.com/sma_uk
▶ | TWITTER: https://twitter.com/SMA_UK_
▶ | FACEBOOK: https://www.facebook.com/SpinalMuscularAtrophyUK/
If you do have any questions for Ross, Michaela, Katy, Luis, and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
*Living With SMA Disclaimer*
The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or its 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.
One, two, three, four. 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. Three, two, one, go. Hello everybody and welcome back to another episode of the Living With SMA Podcast. My name is Ross and I am gonna be your host for today. Now, introducing today's episode for you. I just want to start off with a little bit of a trigger warning before we introduce today's guests. Not that they're anything scary or anything like that, but the topic of conversation today is, we're gonna be talking about the care system. And the care system itself, it's a very difficult time for many people at the moment. Many people are struggling to get access to services and support. And basically we are gonna be talking a lot about the system today and what's involved in that, sharing our experiences. And with that does come a lot of anxiety for a lot of people. But we did think it's still very important to discuss these topics, to share our honest opinions and personal stories and raise a little bit of awareness about the realities of what is happening within the care system. It's, I think it's fair to say it's a very broken system. So, yeah. Just a little warning to start us off today. Right. Let's introduce our guests for today. Now you may recognise some of these guests from before because today's episode is called the State of Care One Year On. And the purpose of us doing this is because we've been together before. So this time last year, episode 16, if you wish to catch up on the SMA podcast. We've been here before and we are gonna be having almost a one year refresher and an update talking about the care system. So let's start off with introductions. If you guys can briefly give me a little introduction of who you are, where you're from and a little bit of a brief history about your job role. So can I start with you please Katy? Hi. I'm Katy Etherington. I live in Hertfordshire and I am a freelance graphic designer, and I also run website called PA Pool which connects PAs with PA users. And I've been employing my own PAs for, oh, it was probably about 25 years now. So yeah, that's me. Amazing. And Michaela? Hi everyone. I am Michaela. I'm from Northern Ireland. But I have experience across the UK in my professional life. So I'm a PA user and employer. So I basically run the ship on my own. I'm sort of unusual in that sense that all of my PAs are under my control fully, but I also work in the charity sector and have worked in a number of charities, both in Northern Ireland and UK wide in order to help people with conditions either SMA or like SMA, and other disabilities as well to try and support them in the best way that we can. So that gives me a lot of relevant experience from that side as well, and a lot of my work takes me into writing policy and legislation. So I'm a little bit of a mixed background. Brilliant stuff. And Luis? Yeah. Hi everyone. So for those of you who don't know me, I'm Luis. I have SMA type two. I'm also an employer of my own PAs. For my work life, I'm pretty much involved in diversity and inclusion as a consultant, but I'm also involved in SMA UK as a freelancer. I'm very excited for today's episode. I've got a lot to share from last year. So yeah, really looking forward to it. Brilliant stuff. Now last year's episode was all about talking about how PAs aren't just for care and you talked about the positive effects of having a PA and how it really can benefit our lives. And the purpose of today's episode is, we wanna have a reflection one year on, and see where we're at in the world with these things now. And I think it's really important to check in really and see what each of our care situations are currently like and how that has really changed over the past 12 months. So if I kick things off myself first by just saying with my care situation, I have a mixture of direct payments and continuing healthcare funding for my carers. I don't have 24 hour care mainly just night overnight cover. But I wanna know for you guys because you really shared your personal stories in the last episode, how life has maybe changed over the past 12 months. Luis can I start with you?'Cause I think you've probably had maybe the biggest change of us all. Sure. I mean where do I begin? So in the previous episode I spoke about my experience as a service user of a care agency. And that was really really... It was really a mixed bag of good and bad experiences. But after the episode things really got a lot worse than what I had shared. I was pushed to the point of no return and just decided I'm gonna take the jump into employing my own carers and having direct payments because we are in a situation where... Just hold on. Just hold on. I'm gonna have to start again. Can I ask you to take that outside please? It's picking up on the microphone. Sorry. Okay. Let me try that again. So, yeah, absolutely. Thank you. A lot has changed since the last episode and I know that in the last episode I shared my experiences and that was a mixed bag of good and bad feedback for the care agency experience. But ultimately I have been pushed to the point of no return by the care agency system and ended up going down the direct payment route and employing my own carers. And I think that that has changed my life so much. With the care agency, they got new management in place and it was really I guess a shock to the system for me because they were wanting to now start to risk assess everything, where I had previously gone home with my carers they wanted to now know where I'm going for what purpose. They even wanted to know the details so that they could contact the venue and make sure that they had health and safety procedures in place for people with disabilities just going to a whole next level. And when I started pushing back they kind of just in simple terms said that, "Well, if you don't comply, we can't allocate a carer to accompany you to go do your job." And it pushed me to the point of going to go get legal advice, going down the Human Rights Act and the Equality Act and trying to shock the agency into realising what they're doing and how their processes were extremely exclusionary and were actually infringing on my rights as a human being. But that really made no difference for them, they're a large organisation and they knew that I wasn't gonna have the clout to take them to court, so I just made the decision to go and employ my own carers. It started off a little bit rocky where carers weren't paid on time by the payroll company. But essentially my life has improved tenfold, I have so much more freedom. I can go do physical activities like swimming at the leisure center that I couldn't do before. I have really had the ability to be as independent as possible with a carer that I've never, ever had in my life before. So for me it's just, it's been a major change. I'm sorry to hear that it sort of got to that stage, but it's great to hear that you've got that better freedom now. Michaela, coming to you, your sort of similar question. How has your life changed in terms of care over the past 12 months? I think nothing major has changed I suppose is the kind of overarching, probably good news of that. For me, I've been using self directed support for a long, long time now. So using direct payments or self directed support from when I was in my teens. I think the major change for me this year has been the uplift in the rate of pay. So there was a decision kind of October time last year to uplift everyone in Northern Ireland up to a new level of pay, which brought it up to £14.75 an hour, which means I'm able to pay my PAs a lot more per hour than what I was. It was just getting too close to the minimum wage that it was making it really difficult to recruit. That has really helped recruitment issues. So that has been a real bonus for me, I think. But in the same breath I don't think it should be viewed as a bonus, I think it should be interpreted that we're paying people poorly. So that's a good thing. But also just have your full staff too has been quite nice. With the pandemic it has been really difficult to pull together a full staff team, so having fewer issues has been really, really good. So my care thankfully is ticking along nicely, and for me no issues with the pay so thankfully not really all that much to report. That's good. And Katy, sort of from your personal point of view and also a business point of view, you've mentioned there the PA pool. Have you noticed any sort of major changes in the past 12 months? Is the demand a lot higher now? I would say demand isn't higher and it's gone... It went through quite a quiet period to be honest. In terms of new members joining, especially PAs obviously, 'cause we've lost almost a third of them because of Brexit. But in terms of people sort of voicing their kind of difficulties in recruiting. I haven't really heard that many stories, to be honest. But I think that's probably more down to the fact that people are kind of almost resigned to the fact that this is how it is and it's not gonna change anytime soon. They're kind of just trying to get on with it and make the most of things. But one thing I did notice in terms of PA Pool was the amount of complaints that I received about PAs last year was just through the roof. In my whole 16, 18 years of running it I've never ever experienced so many bad complaints against PAs, which is quite worrying. Anything from people just not turning up to people abusing. I've even had to deal with the police and safeguarding, and this has never ever happened before, which is quite worrying. I'm just hoping that there was a glitch and it's not an upcoming trend. But we'll keep an eye on that. But actually in terms of my personal year of being a PA user, yeah, I was actually... Last year when we spoke, I was actually sort of bumping along quite happily and everything was very nice and secure. I'd have a couple of long term PAs who had been with me and then back in the summer that all changed in the blink of an eye, it seemed one of the PAs who'd been with me for two years had to leave very suddenly to the point where I didn't actually know if I was gonna get out of bed that morning which was really scary. I think for the first time in my life I actually felt really vulnerable. I don't have a partner, I don't have family close by, it actually did make me think, oh dear, what am I gonna do if she just ups and moves and I haven't got anyone to get out of bed. That was quite stressful because I had to obviously find emergency cover and then rebuild my team. But it was... It actually turned out to be a blessing in the end. I was lucky to get a couple of brilliant new PAs very quickly. And also, because of the situation, the nature in which the old PA left, it kind of shocked a few people, a few of my friends who I was talking to and one of them actually volunteered to get trained up and be my emergency PA, so she just lives 15 minutes away. It was absolutely perfect. So yeah. Good. Good stuff. I wanna talk about some of the issues surrounding the care system because there's been a lot of the outreach team themselves have done a lot of independent research on this, reaching out to different people who have got sort of different services. And I think probably one of the most common issues that we can all agree on is the fact that when it comes to securing a care package or funding, there seems to be this sort of postcode lottery where there's no sort of standardisation of criteria of what makes you eligible for a certain amount of hours or support. Luis, is this something that you're aware of as well and agree with? Yeah, absolutely. I couldn't agree more. I am... I think we're all part of that system, whether we want to admit it or not. I know that myself in point, I have a lot of medical equipment in my home and I know that certain criterias have been altered by CHC and that's Continuing Healthcare for those who don't know that acronym, to the point where I don't qualify, or I was told I didn't qualify for CHC, even though I'm surrounded by medical devices. And when I informed them that I was going to appeal, they then said, "Okay, we will part fund care". And they've allocated something crazy like 12 and a half hours a week out of the bulk of hours that I get.
I'm supported Monday to Saturday with care between 6:30 and 6:30 PM and my family do my evening care, and it's crazy how talking to my peers and other people in the SMA community, how it's so dependent on your assessor and on the social worker that's dealing with your case and how likely they are to fight for you. It's dependent on the county that you live in and the budgets that they have available to them. It's really a stark contrast to someone who would be, let's say, employing childcare. There's a standard rule that you can't pay below a certain rate or you are guided by a certain set of principles as employing someone to take care of your children. But when we look at the care system, there's very little of that kind of stringent policy around, PAs will be paid this amount and these are some of the guidelines that you need to follow as an employer. It's kind of dependent on the payroll organisation that you're working with and the advice that they give you on, this is what your contract should look like. So for me, I've never had to employ my own care and it's a completely whole new ballgame doing payroll. I have no idea how to do that. So I'm relying on an organisation who's in charge of my area to run that for me. And they dictate the state of play. They don't offer the level of support that someone as an employer would need when they don't know what they're doing. I mean, my carers never got paid for the first two months that they worked. And what I mean is... What I mean is they never got paid on time. So if I hadn't had an original relationship with those carers, how could I have guaranteed that they would've stayed, getting their salary a week, two weeks late? No one would stand for that. They wouldn't stand for that but from their employer. So I think this is a really tricky topic. And I don't wanna take all the air time but I guess for me the challenge is I think social services also plays a significant role in this. They don't come together to share learnings. There are a lot of assessors out there that don't understand what it's like to have SMA and therefore have their own perception of our disability. In my assessment, I was told that because I'm not getting medical help from my doctor for pain, and I'm self medicating with over the counter medication, it doesn't make me eligible for points on the CHC assessment, yet I'm managing pain on a daily basis. I'm using CBD oil and I'm using paracetamol and I'm using neuromol and I'm using other anti inflammatories because I can buy them over the counter and don't have to contact my GP. But because I'm not doing it through the GP it doesn't count. So criteria selection, it's just so all over the place and it explains why we struggle so much. Yeah. And Michaela you're sort of shaking your head there as well. It's crazy that there is this almost, hierarchy, isn't it? Of where people are based as to what access you can get. Yeah, very much. I think what I've noticed especially in the last six months is that disabled people are being pitted against one another and honestly it's like the hunger games, and may your odds be ever in your favour with the assessor. And that is not how it should be. And that is not a laughing matter. We're talking about really basic things here. If someone is in the kitchen and they're preparing a meal and they turnaround for a second, slip and fall, they might have a problem, like you mentioned they're gonna take some painkillers to address that pain. I mean, for us to do something like that, you'd have to jump through hoops and it shouldn't really be happening. And I'm seeing that on a day and daily basis. I'm seeing people really frustrated with the level of support they have or how of hours they have, but also with what those individuals then can do, and that can also be restricted. It's just a really frustrating time at the moment. And I think, ultimately what we need to do is wake up and realise we're not asking people to benefit off it, we're asking them to help us get up, to maybe take some medication, maybe take some medication for indigestion, maybe go to work, to get us out to the cinema, whatever it is that people do on a day and daily basis. We're not asking for something that's unreasonable. And at the moment I'm hearing time and time again that people feel like they're asking them for the world. But they're not. And then that spirals into people not having the confidence to ask for that help, for that support, because they're then afraid of losing the support that they already have. It's a real interesting situation, but it seems to be quite widespread. Yeah. I was gonna say, Katy, this sort of brings me onto the topic of a lot of people are scared to maybe ask for that little extra bit of support, or when we have those assessments it brings on a lot of stress for a lot of people because there's that fear, isn't it? That these assessments that we have to go through, they could end in a review or a reduction of your own package, which is terrifying for a lot of people. And I think a lot of people don't understand the stress and the mental health effects that come with that. Katy, I wanna sort of ask you about that side of things. When it comes to the stress and the anxiety that comes with employing a PA and having to go through these assessments. What are your thoughts on that? Yeah, I mean, you would think that we have quite enough of our own stresses and anxieties to deal with without all this red tape that we have to go through, but I mean we do have to deal with it, and I think a lot of people don't realise how stressful it is. Even just relying on someone totally 24 hours seven is a stress in itself because you never know, something might happen and you might be left with nobody. You can't tell. I mean, life is life, things happen, and that's difficult enough in itself to deal with, but I think when you've got unreliable people as well it brings even more stress and anxiety into the mix. And I think that is definitely... I've definitely noticed more instances of unreliability in the past year through PA Pool. I've also noticed the complete disparity of wages across the country. I've seen some people can offer up to £250 a day for a live in PA, and then other people can only offer £70 and their support needs don't differ that much. And as Luis and Michaela have said, it's a lottery. It is an absolute lottery and I think there needs to be some centralised organisation, like we had with ILF who oversee care across the whole country. Local authorities are stretched, they can't cope and this additional task that they now have had to do since ILF was closed you can see it's not working. It's not working. Yeah. Yeah. And just for those that don't know what the ILF is, are you able just to briefly explain or just describe what they are? Sure. It was a government, correct me if I'm wrong Michaela 'cause you probably know a bit more than me, but they were a government organisation who took on the role of providing funding and support for people who use care. So they would liaise with the local authority, who would also contribute towards the care package. But they were great because they totally understood the requirements of a PA, the needs of a PA user, they understood all of that, and they also were very good at advising on wages and stuff like that. So I think back then things were a lot more level across the country, and obviously local authorities weren't so stressed because they didn't have the entire burden of having to understand this relatively new concept back then. So yeah. I don't know if you want to add anything to that, Michaela? Yeah, I might jump in there. I'm one of, I know, very lucky people who still receive ILF funding. So we know that there was decisions made in Scotland and Northern Ireland to keep the fund open even in the money sense. So I started receiving ILF funding before it was closed and because I'm still alive I still receive that funding. And I mean if I separate my ILF care from my social services provided care, I'm gonna choose ILF every time, it's so much more straightforward and they trust me as a service user. I have to send bank statements in every quarter for my social services care. I understand the need to do that, but ILF review them once every year, or once every two years. They review them all in one go, I know when it's coming up and it's much more flexible to my needs as well as ensuring that the public procurement and public money is managed appropriately. But I think what gets me most is the staff in it. The staff in the organisation know what we're going through, they understand what it takes to be an employer, they understand what you need from a PA. And they just get it, it doesn't need to be explained time and time again. Like if you say to them it takes me an hour and a half to go to the toilet, they don't question that, they know it's true. And that's the difference, they're really putting person centered care into action. But I think the irony of it all is they are a governmental body so it can be done by the government. And I don't know I think if it was up to me I would be putting them in charge of care but I think it's really important that we reflect on the fact that there is a really system in operation in Scotland and in Northern Ireland and it would be easy to replicate across the UK. That's one of the main issues that obviously we're trying to highlight here, is the fact that there is no sort of that umbrella body that really understands the issues that people are facing at the moment. Luis, without going too political here, when it comes to the recruitment and the retention of staff and PAs, I think it's fair to say that the majority of the issues it comes down to, it comes down to money. We live in a world that revolves around money and funding and sadly there isn't that incentive, is there? At the moment, to really want people to think of PA work as a career. Yeah. I think it's, to be honest, it's a sad state of affairs because there are a lot of passionate people out there who want to do this kind of work. They find it rewarding. I just look at the two PAs that I have and Katy, you know that one of those PAs I found from PA Pool, and I'm so grateful for that because she has seven years experience working with a service user who has SMA, and talking to my peers, that's unheard of. So I'm very grateful that I found her, but ultimately there's the anxiety of am I gonna be able to retain her and am I gonna be able to retain my other PA. Richard has been in the care industry for over 30 years and he's earning £13.50 an hour. He's got certificates coming out the wazoo, I mean, he's done complex care, he's done end of life care. I mean, it's just his experience is probably one of the most experienced PAs I've had in my life and I'm 37 years old. And I'm paying him £13.50 an hour. It's crazy. I also know that, I think the decision makers have got a lot to do with the current state of affairs. And I'm going to try not be political, but I don't know if Katy or Michaela, you know an organisation called LiveYou, I came across them towards the end of last year, and they actually advocate for you with your local authority to get your rates higher so that you can pay your service users more. So after I had explained my situation that I had moved to direct payments and that the budget had been reduced from £19.50 to £14.50 an hour, And some of that £14.50 I have to retain on the side for things like sick leave and holiday and all of that jazz, which is why I can only pay £13.50 an hour. But when I explained the situation, they were like, but why? And I was told by the system that it's because they're providing an organisation that can run payroll for me for free. So that's why they're bringing the rate down, but it's not true because they have clients, LiveYou have clients in my area who have even higher than the £19.50 rate that they were paying, because they've advocated for them and they've made the justification and the need for that increase in budget. So these kind of decisions that are made at the top levels create an environment that is not really conducive for equal pay. And it's not conducive for people getting the right amount of hours that they require for their care package either. Exactly. I mean, we've seen it recently in the news, haven't we? With all the nurses striking even. It's not just fighting for better wages, it's coming down to principle now. It's the working conditions and it's the similar situation with PAs as well. I just wanna touch on as well, another sort of issue that has been raised, that's come to our attention via the research with the outreach team, is there seems to be a lack of support for us as employers as well. We are seen as employers, Michaela can I come to you for sort of comment on this? Because I understand, I'm trying to put a bit of a positive spin on here. I understand you work for Pathfinders and there's sort of some training opportunities available as well as an employer. Yeah. So it's a big field and I had to do a lot of learning. And being an employer of any description is just a big learning curve and nobody knows all of the answers. But I feel like we can put the answers together, if that makes sense. So Pathfinders Neuromuscular alliance is the name of the charity that I work for, and we support any muscle weakening conditions, so SMA, but also other conditions as well. We have an online training course that is for PAs of people with muscle weakening conditions. But coming up shortly, hopefully in the next few weeks, we will have an online training course which is for employers of PAs so people like all of us here today who are PA employers or you're thinking of becoming an employer, to understand what that role is like, how to manage it and how to really make the best of it, because I think Katy touched on it earlier, we know the mental health impact of having a PA is really difficult. Likewise not having a PA is really hard in your mental health. So actually we hope that by training people and teaching them how to do even some of the basics like putting together a rota or having difficult conversations around setting boundaries. All of those really important parts of having a PA. Actually we are making it easier not only to yourself so that you're living the life that you want to live, but it will also help you to retain staff and recruit staff in a way that's sustainable. So I'm really excited to see the training program up and running, and we've got a really good team working on it to make sure that it supports people in the right way. And I think that's one of the ways in which we'll able to really support people with the learning that comes with being an employer. Definitely. And Katy, I wanna sort of come to you now as well, a bit of a hard hitting question here, but I know you're a very passionate woman. If you had the opportunity to either sit down with the Prime Minister or a local councillor, somebody of power should we say, and I use the air quotes here... Okay. What would you say, what would you do? 'Cause I also understand that you are sort of in the process of... In the very early stages of writing some kind of strategy to take to the government. Yeah. I'm very honoured to be involved with Baroness Jane Campbell and a lot of other really high power, knowledgeable people and we're kinda just discussing the problems and possible solutions to this problem. But I think, it's very difficult to try and make somebody that has no understanding or has had no experience of the kinds of things that we go through, it's hard to make them understand in a few sentences but I guess if I could sit the prime minister down, I would say think about this, at some point in your life, there's a high probability that you're gonna need to access social care. And if you can't fund it yourself, how would you feel about living your life if you were told that you couldn't live it the way you chose? So yeah, it's a difficult question, but I think it's so important that we get the choice on how we live our lives, because at the end of the day, we're contributing to society, we're paying our taxes. We're working. We are valuable assets and we can't be valuable assets unless we get the support to do that. Definitely. I think that is, as people with disabilities a lot often a lot of our decisions and choices are without any control. They are taken away from us. And if this is one thing that we want to have a little bit of control in, is when it comes to our PAs. These are the people that are helping us live our everyday lives. So it's incredibly important. I know for myself personally, I recruit staff, I've got a very small team of staff and I decided to go through an agency, but have a set... I've got a very small team, but a set team. 'Cause I didn't want random people each time having to go through the anxieties of explaining your routine each time. And even though I went through an agency, I made it very clear to the agency that I still wanna be in control. I still do all my own rotas. I still interviewed my staff and I still was very heavily involved. So I think I was lucky in that sense that the agency allowed that. I know that's not the case for many people, but it is important for us to still feel like we have some control. Luis, I wanna come to you sort of just for some closing words really, as we come to the end here. I just wanna have some words of wisdom from yourself obviously, as a little summary of what we've talked about today, and the care system. Wow. I don't know if they're gonna be words of wisdom, but I think listening to the whole conversation, it's very clear that there is something wrong. It's very clear that there are people like Katy and others and Michaela who are on the front lines trying to make things better. And organisations like LiveYou, who really I think are doing a great job to advocate for the service user as an individual and using the legal spectrum to convince adult social services in your area to do what's right. And that is enable us as individuals to participate in society like anybody else. If I take my case in point, I had to go through very difficult times with an agency who were literally telling me what I can and can't do to get to where I am now, where I have a lot of freedom. But with that freedom comes a lot of responsibility, a lot of anxiety, cost of living is not a joke anymore. And that's for our PAs as well. That's for us as employers, having extra people in our homes that we have to worry about. And I think ultimately the best advice I can give people is just try and build a peer network that can be there for you when you need them. I know that SMA UK have got an outreach team who do amazing work, and they're people and we need to remember that, and they're not gonna have all the answers. So the wider you grow your peer support group, whether it's online or in person, the better chance you have at being prepared for the difficult conversations and opportunities to improve your state of care. Definitely. You said you weren't wise, what are you talking about? That was great... I'm trying. I just wanna say a massive thank you to all three of you, Luis, Katy, and Michaela for sort of sharing your stories. At the start of this podcast we did say it's a subject that's very sensitive and often triggering for many, many people. And I think it's important that we're having these discussions, raising awareness, and hopefully showing people the realities of care. It's not easy whether you are an employer or whether you're receiving the care yourself. It's not easy. And hopefully we've showcased that today and people have maybe learned some more of the realities of what goes on. And hopefully along the line we can influence some change as well. Just on a final note, I just wanted to touch on the fact that the end of this month, the 28th of February is Rare Disease Day. And this is a day for the community to sort of come together. And the point I'm sort of... The reason why I'm mentioning this is because the theme of Rare Disease Day this year is to improve care coordination, which in itself is really important. I know the Genetic Alliance UK are gonna be running a report on that, on the day. So yes, just wanted to mention that, there's many virtual events going on around the month that you can check out with regarding that. So thank you guys for being involved in today's episode, really appreciate it. And we hope you've gone away from this with some information. I'm gonna leave it there for now. So just a big thank you to you all and we will see you next time. 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 at smauk.org.uk.