Podcast: Why Sarah’s fighting for free testing

The Disability Download

Sam catches up with Sarah to hear about her family's experience of shielding the last couple of years, and why vulnerable people should not be forgotten about.

Some of the subject matter in this episode around coronavirus and isolation may be triggering.


Sarah Walker: I was absolutely flabbergasted, though to hear that that isolation was ending and, and that the tests were going because it just feels astonishing to me like OK, so everyone can just have COVID and they can just be wandering around. And because actually although you know people were referring to when they had the Freedom Day and things like that, all of these easing of restrictions for the general public have increased the restrictions on our lives.

Erin O’Reilly: Hello and welcome to the Disability Download; brought to you by pan disability charity Leonard Cheshire. I’m Erin O’Reilly and on this podcast we respond to current topics, share stories and open up conversations about disability.

Hi everyone and welcome back. Now at the time of recording this episode, in England, all coronavirus restrictions have been lifted. So this means there’s no obligation to self-isolate and free testing is also winding down. Understandably, this has been met with a lot of questions and many people are going to be feeling anxious by this news. As someone who is actually classed in the high risk group herself, hearing people talk as if the pandemic is you know just completely over is really frustrating.

And it’s definitely been difficult seeing how differently people have approached the pandemic, and you know this idea that vulnerable people should just stay inside it’s just completely callous and lacking in any empathy for those who have been isolating for the last couple of years. And while the government may be set on returning to normal – whatever that means – there are a few things that should definitely still be in place to help protect clinically extremely vulnerable people – and one of those is access to free lateral flow testing.

You know asymptomatic testing enables people to meet friends, family and colleagues – and you know you can protect yourselves and others with that kind of testing. So at Leonard Cheshire we feel that the the government must, as a minimum, provide free testing for clinically vulnerable people regardless of age, as well as the people who have support from carers and people living in care homes as well.

So that actually leads me onto this month’s guest. So we’re supporting her with her petition for free Lateral Flow Testing for Clinically Extremely Vulnerable People and those that support them. Her name’s Sarah and her brother Dan is Clinically Extremely Vulnerable to COVID and they’ve been shielding. So my colleague Sam catches up with Sarah to talk all about her petition and her family’s experiences over the last couple of years. Now, some of the subject matter in this episode around coronavirus and isolation may be triggering.

Let’s go over to Sarah and Sam!

Sam: Thanks Erin and hello everyone and welcome to The Disability Download. I'm really happy to be here today talking to Sarah Walker, who's been campaigning absolutely tirelessly for the government to protect access to free coronavirus tests for those, like her brother Dan, who are Clinically Extremely Vulnerable.

In a wider sense, the campaign also looks to preserve some of those coronavirus protections that we seem to be leaving behind at the moment in a bid to declare the pandemic over. So, in any case, we're extremely lucky to have Sarah with us today and she has very kindly taking time out of her very busy schedule as a carer to Dan to speak to us about her campaign. So Sarah, thanks so much. It's wonderful to have you here. Welcome to The Disability Download.

Sarah: Thank you for having me.

Sam: So my first question is, Sarah I think I speak for everyone when I say our world changed completely two years ago. Absolutely turned upside down. But for you, your brother and your parents, you actually had to make some particularly drastic changes at that point. Could you tell us a bit about your sort of situation there and as I know you have a really close relationship with Dan and you all very much work together as a unit to keep each other safe, how...what's your experience with the pandemic been?

Sarah: Yes, so obviously we were erm..things happened really quickly, didn't they? I had actually been to a course in the Netherlands in February and looking back, you kind of feel astounded that I felt able to do that. But uhm, I remember on the 17th of March, my mum rang me and said, basically, we're we're watching the news and we just, we need to lock ourselves down. You either need to move back in with us or we sort of, you'll not be able to sort of come into the house. And so that was like a week before Boris made the sort of announcements for the official lockdowns.

So I kind of packed like a weekend bag, erm, I only live 5 minutes up the road from them anyway. And Dan has an individual budget for his support, which we manage as a family. And I worked to support Dan as part of that team. But it was just the absolute fear of what was happening and how that could impact Dan. The real genuine fear of how vulnerable he was to COVID was...so yeah I packed my bag and I moved back in, with my dog, into my family home and we went into you know, full kind of lockdown from that point. 

Dan would normally have support workers coming in into the home to provide his support and they stopped from 17 March. We didn't have any outside support for over three months. Dan didn't leave the house. We were only able to like myself, my parents to leave the house one at a time to maybe like walk, walk the dog or something, somewhere really distanced 'cause we were so worried about being near anyone. And we just, we sort of struggled to get the online shopping slots and things like that.

For months and months, I sat on the doorstep of our family home and anti-bacced every single item of anything that came over the threshold. My mum taped up the letterbox so that even post wasn't coming into the house. We had a box on the doorstep, we literally just completely closed ourselves away. For the first few weeks after we did that, we were still nervous that it might have got in somehow.  And so yeah, it was a really scary time. But, I think part of that, those massive changes, for us as a family were less shocking to deal with. Because when as a family you already are caring for someone who has really high-level support needs, you're always putting somebody else’s considerations ahead of when you make your own plans and things like that, so it's it's not so out of out of character. It's not so out of routine for us to kind of have to cancel things and drop things and things, so I think actually at the beginning it it was it was kind of OK. Yeah, it sort of made sense that that was how we had to behave.  

It was terrifying, mainly because, you know Dan has had breathing difficulties, hospital admissions to do with his breathing and stuff, and he'd had a hospital admission just a month or so before the pandemic hit. So you know, we felt very strongly that he was very vulnerable to COVID. He has a rare genetic condition that results in profound and multiple learning disabilities. And it's called ATRX. And we have another younger brother that had the same condition who had passed away just the year before COVID came into our lives, vry very suddenly from sepsis pneumonia.

So obviously we were living with the the sadness, but also the increased anxiety of having lost someone so close to us in those kind of circumstances. But then also, you know, knowing that that someone like Dan is that much more at risk, he can't wear a mask, if he was to be admitted to hospital, you know it would be a struggle to get him to have the sort of oxygen on and different things like that really. So yeah the beginning it was just that very physical fear of sort of absolutely needing to protect him. We were scared about whether Dan's life would be valued enough for him to sort of earn space on a ventilator, when you know when the numbers were so high. And we were terrified that because people weren't allowed to support people in hospital, they weren't allowed to visit people and we were terrified that that if Dan needed a hospital admission for any reason that it would be, you know that we wouldn't be allowed in with him and that that would be unthinkable, really. So yeah, that was, that was what was happening right at the beginning for us. 

Sam: Thanks Sarah, and I'm I just did want to say how much I appreciate you talking so honestly about what's been a very eventful couple last couple of years for you and often quite a difficult couple of years. Really appreciate you saying. Now fast forwarding two years, earlier this year the Prime Minister vote basically declares the pandemic almost over. We're ready to go back to normal and now thinking about your petition, what was your initial reaction when you first sort of heard that statement being... that sentiment being expressed, and that we can all go back to normal again?

Sarah: Well, hey, I'd love to go back to normal [laughs]. But unfortunately he didn't back that up with much evidence did he? I have never known so many people have COVID than I did over the Christmas period. It felt like every other person I knew had COVID over Christmas and so to to go from that, of it just being absolutely everywhere, to deciding that we wanted it over and done with was a real shock to the system. Obviously there were hints that something was coming. So I started like ordering the lateral flow tests every 24 hours, which you can do on the system, at that point.

But I think there was just a genuine feeling that surely, surely they can't forget about us again. Surely the people that have suffered the most from this pandemic, that have had the biggest impact to change to their lives, you know that that they'll be putting some safeguards in place because people with learning disabilities were very much forgotten at the beginning of the pandemic. For when they were sort of creating the shielding list and things we had sort of many people that we knew, with neighbors and things like that that had been told to shield, you know, because of a certain health condition, but we knew that in no way could they be as vulnerable to COVID as Dan was. We had to contact the GP and sort of basically request that he get put on the shielding list and the GP said to us, well, why do you need us to do that? Because you're basically you're shielding him already. But as a family, we felt very sure that things were gonna change and we needed the sort of paperwork really to back things up. And obviously that was the case. 

So it's been a real sadness because basically as people have been easing themselves out of the strong restrictions, obviously I want to, I want to go on a night out. I want to hug my god daughters, I want to sit on my best friend’s sofa and have a glass of wine. You know, we aren't different to the people that don't have someone vulnerable in their lives in any way except that our priorities are different. And so as much as I desperately want to be able to do those things, I don't feel that that's safe. So I was absolutely flabbergasted, though to hear that the, the isolation was ending and that the tests were going because it just feels astonishing to me.

Like, OK, so everyone can just have COVID and they can just be wandering around. And because actually, although you know people were referring to when they had the Freedom Day and things like that, all of these easing of restrictions for the general public have increased the restrictions on our lives. Because as we feel like OK, we maybe feel safe enough to go out for lunch if we've got our masks on and everyone else has got their masks on and the tables are distanced and you know all of these things are put in place. But then when they take those things away that make us feel safer, you know they're, they're taking away our choice to participate in these things.

So it has felt quite strange and yeah, I mean obviously there's a petition out which has got a massive support behind it that is looking at you know that they want to keep the isolation and the testing, and all of the all of the new easing of restrictions. I absolutely agree with that personally. But when I was sort of thinking about what was happening, I really didn't see that there was going to be any change to these plans. And I sort of spoke to my mum and I said what is the, what's the bare minimum that we need? What's the bare minimum that we feel we can ask for and someone might listen to us? And the answer to that question was just the ability to have free access to the lateral flow tests. 

So that means that anyone that comes into my brother’s house to support him, is able to use a test before they come in the house. So that we know that they're not bringing COVID into the house. They wear a certain level of PPE, but because of Dan’s support level needs, and you know the way he's nonverbal, so the way that he communicates he is very physical, he needs a lot of sort of hands-on support. Soit's not the same as kind of being able to go in, in a full range of PPE and feel like you know you've got that in place. And it also means...you know I would hope that as a carer to Dan I would have you know, if I have free access to those tests that would mean that if it's a friend’s birthday I can ask them to test so that I can feel confident sitting next to them in a ventilated room, for example, perhaps, or you know, I still haven't really, I haven't been in a lot of people’s houses and things like that.

But I've kind of maybe sat in a conservatory with the door open and you know, it really doesn't feel like a lot to ask for. And it's such a small thing compared to everything that's been going on for us to feel that little bit of control. That little bit of of safety. And yeah, it's just the idea of of us not having any idea is genuinely, you know, it's threatening us to have to go back into our own lockdown. This narrative that was kind of around at the beginning of the pandemic and has popped back up again, now of well we need to get back to normal and you know, quote ‘that they need to keep the economy moving and things like that. But we need to do this so the vulnerable can stay at home’.

Firstly that's really mean. And you know, it's not just one person, it's the entire, you know our entire family that are supporting Dan that would all need to sort of lock ourselves away. And I don't know how society can possibly ask that of us. But also we can't even do that, keep Dan safe if he was to just stay in his house, unless we go back to it, being entirely family care, and unless everybody that is in his support team is completely shielding for him, because even when he's in his home, people are coming into the home to, you know, to provide him with support so, we can't even just stay at home, but you know, please, people don't say that. And don't ask that of us. And you know please try and realise how hurtful it is to just say that the vulnerable can stay at home. It's just terrible.

Sam: I completely agree, and I think like a lot of people I was quite shocked by some of the callous attitudes that were on display at certain points in the pandemic with regards to vulnerable people and people with underlying conditions. Is that something that you've experienced? What have the attitudes of other people been like, members of the public?

Sarah: You would really hope wouldn't you that times of hardship and things like this bring the best out of people, bring people together, and there was a little bit of that, you know, obviously we had all the sort of clap for carers, sort of thing. And in my mum’s street they set up like a neighbors WhatsApp and there were several neighbors that every time they went to the shop they would, you know ask if we needed anything, because you know we really, we weren't, we didn't step inside a shop for 18 months or so. And there's always going to be something that doesn't come with your, with your shopping delivery or something that you forget about. So you know there was some of that. There's also the fact that you know, we appreciate that this was unprecedented, and that everybody was having a really hard time,  so as much as you can feel a bit disappointed that people are maybe not checking in on you as much as you might like you know, you understand that it was, it was pretty rough for everyone. 

But at least when everyone was in the same boat, it was less hurtful. And also there were things in place, weren't there like everyone celebrated their birthday via some kind of like zoom, murder mystery or something. We were, you know, we were doing them together. There was a sense of togetherness. But now the general public have got rid of all of their sort of things. You know, obviously people have put into place risk assessments and all of that kind of thing. But if we don't feel that that is enough to protect Dan, then we're basically left out in the cold.

We're left without access to sort of a lot of those things that did exist when everybody else was in lockdown. As a family, we very much have lived our lives visible and you know, we go on holiday together as a family. You know we kind of have always done things together; always wanted Dan and Sam to be, you know, contributing members of our community to be seen to be valuable, to have gifts and all of that kind of thing. So you know we’re used to being part of our community and stuff and yeah, it feels really alien to us to kind of feel like we're  separate to other people again.

At the beginning of the pandemic I bought Dan, bless him, got him T-shirts that sort of said ‘shielding keep back’. It's like completely the opposite type of thing than we were encouraging people before. And you know Dan's got really poor vision, if you're able to come up nice and close to him and he might want to reach out and look at you really closely, to support his communication. And you know you've got to change all of that just because you're scared of what being are carrying. We've got some very fetching high viz vests that, you know, say ‘shielding and keep two meters away’ that we wore when we were sort of going on walks earlier on. And we felt safer in those outdoor spaces and we don't go to super busy places that we haven't used them as much recently.

But I think we will probably have to reintroduce that and hopefully people notice. Hope people look at it because it's amazing how people sometimes manage to not see a neon reflective vest. Because it's like you need a prompt. A reminder to people sort of generally that everybody isn't able to just go back to normal. You can say it as much as you want. You know ‘we need to get back to normal’. But COVID is not less of a risk now. Thankfully, Dan, you know he's had three vaccines so far. There are still vulnerable people that haven't been able to access the vaccine for many different reasons and so obviously those people must be in an even more terrifying situation. 

But I know that people have contracted COVID after having the vaccine. I know people that weren't in any of the sort of vulnerable groups who have still, you know, suffered really serious consequences from COVID, even though they've been vaccinated, even though they weren't in an at-risk group. So there's nothing, there's no guarantee that Dan isn't still, at a really high-level risk, he can't wear a mask, he can't choose to kind of protect himself from other people in that way, and so we have to do everything we can to protect him. And we have to find a way that we can still get some life out of our, you know, out of our situation while living alongside COVID. So you know that we can still go out that we can still have all of those hugely essential things for our well-being. You know we need them as much as anyone else. 

It's the irresponsibility of them making statements like we're going to get rid of the free tests from the 1st of April, without any reference to anybody that might have been in the sort of higher risk groups. Without any kind of a nod like it's OK, we remember you and we remember we told you to stay in and we understand you'll be scared and this is what we based our decision on, this isn't easy to understand sort of figures and things. This is somebody that you can contact if you've got any questions about this, you know sort of a line of communication. None of that was offered, so you're just literally dumped into a state of panic. A state of anxiety.

So that was why, I've never set up a petition before in my life, didn't really know what I was doing, and I was kind of multitasking massively at the time when I was setting it up because I was supporting Dan. But I just felt this real physical need. I wanted to go down to London and stand outside Downing Street and just shout. And I can't do that because I love someone vulnerable and so I can't stand in a crowd. I can't travel to London so I can't even, I can't even use that method of expressing myself. So the the nearest thing I had to that was to set up a petition and I've spent every moment of the past week sort of messaging media and charities and support groups and random celebrities. Just trying to sort of amplify my voice and raise awareness. What a lot of people don't realise is you can have a free test if, so if my brother Dan showed symptoms of COVID I could then get a free test for him.

Well, in my opinion that is very much too little too late, because if he's got symptoms of COVID, we've done something wrong, because what we don't want him to get is COVID. We want to do everything we can to protect him from ever getting it. And you know in the same way, so again carers would get access to a test after they were exhibiting symptoms. Obviously, we know that lots of people can be asymptomatic and carrying COVID and not have any symptoms. They might have been infectious before they had any symptoms, and you know, have already been supporting Dan very closely, so that's absolutely not the answer for me. We need some reassurance and we need to know, we just need to feel like someone’s remembered that we're here.

Sam: Well, at the time of writing, or at the time of recording, I should say, this will be going out a bit later in March, but we've got all our fingers crossed and actually your petition has really struck a chord. It's soared past its initial target of 1000 signatures, and it's around 1500 now. So we do have our fingers crossed on this episode as we record it that we will see we'll see a bit of a U-turn and we will see free lateral flow tests reinstated. What has the reaction from people been like to that? Cause like we said it, it's clearly struck a chord with people. But what's the reaction been like from other charities and celebrities that you've found?

Sarah: So a lot of people I haven't heard back from. Quite a common reaction has been that lots of support groups or charities, they just basically don't share petitions and, and that's frustrating because I feel like obviously we live in a time now where access to information should be so much easier than it ever was because so many people are together in these online communities. But if you're not willing to share information that that could be beneficial to the people in that community...

Sam: Absolutely right and followers of Leonard Cheshire will of course see the petition shared on our page and hopefully will have gone and signed, and we'll share some more details at the end of this episode about how you can support on this issue. Finally, I think to wrap up Sarah, what would be your sort of number one message? You know we've been hearing a lot of’ the pandemic’s over, you know, and move on’ like I said before and we've talked about the fact that that's not quite the case yet. What would be your number one thing that you'd want to say to people who are declaring it over and done with?

Sarah: We don't want to come across as weak. We don't want to come across as us begging for things, but you know, it's just like please remember that we all should be valued equally. Just because of our situations, you know, doesn't mean that we can just be sort of put to one side and completely forgotten about. It's so many people in, in our, you know, across the country, across the world, are vulnerable for a massive amount of different reasons. We are used to being sort of in an ‘other’ group. Because you know I've grown up, I've never known a time without, 'cause Dan's older than me, I have never known a time without him in my life. I know that you know people find us different and you know we need to be visible for people to learn and appreciate the gifts that Dan can can provide. The lessons that he can teach us. 

And actually one thing that's been quite strange is because we've been away from being in public I forgot about a lot of the stuff that we maybe have to deal with. The inappropriate questions and the staring and things like that, which is something that you know you get down to quite a fine art of how to deflect or answer politely or whatever depending on your mood. But, I think that was maybe a little, a little respite from that was one of the one of the only you know bonuses of not being near people. And so it's weird that you forget that that that's just something that that was part of your life and you have to go back to sort of remembering all of that.

I have, you know my absolute favourite response of my mum's when quite often like throughout my brother’s lives, she was asked ‘has he always been like that’ or ‘have they always been like that’? And her answer was always, ‘no he was a lot smaller’. And you know ‘was he born like that’? ‘No, he was a lot smaller’. And I love that and I, you know someone asked me that recently and I cracked that out because there was just, you know.....And I like people to ask questions because I want people to, you know, to learn. But you know, ask them respectfully and...but yeah, so I don't know that I have one particular thing that I would ask from people. But you know, just don't write us off. Don't forget about all of all of the people that can't lock themselves away again and you know, don't underestimate the fact that we're as fed up with it as you are. We want to go back to normal. I love traveling.

I've got friends in different countries around the world and I haven't left the country you know, for two years, obviously. I’d absolutely desperately love to go and get on a plane, but I'm not going to. I don't feel like I can. So you know, they're not the only ones missing out, but there are some people that I guess you know that's not....they're not able to hear you, they're not able to empathize fully. They're not able to appreciate how it affects other people because they've never had to.

Sam: Well Sarah I think it just remains me to say first just how grateful we are for you to join us today and how happy we are to support your campaign with this.

Sarah: Thank you so much for having me. And yeah, it's you know thank you for for giving me somewhere to raise my voice. [music begins] Thank you for giving me, you know, for listening. Because that in itself is valuable for for me to feel like we've got some power, that you know that there are people that are willing to kind of stand with us.

Erin: You know, hearing about Sarah and Dan's experiences I think it really puts into perspective the impact of the last couple of years and just how vital access to free testing really is. I think it's really easy to have a stance of, you know ‘well it doesn't affect me, so why should I care’? But if the last two years have shown us anything, it's that everyone should care, and we should do everything that we can to protect each other, especially people who are more vulnerable.

So I just want to say a huge thank you to Sarah for coming on and sharing her story. And for all the work that she's doing around her petition. I'll pop the link to her petition on the show notes on our website, so please do go and sign it and share it with your own networks as well.

As always, we'd love to know what you think of the episode, so please do email us at disabilitydownload@leonardcheshire.org or DM us on Twitter or Instagram @Leonard Cheshire. And if you've got an idea for a guest or you want to come on yourself, get in touch or tag them on social, tag us and let us know.

And as always, please do remember to like, share and subscribe to the podcast. Thanks so much for listening everyone, stay safe, until next time, I’m Erin and this has been The Disability Download.