Don't You, Forget About Me. Immunocompromised people and Covid restrictions

Coronavirus restrictions are easing here in the UK and around the world. We are said to be on the road to freedom; masks are dropping, hand sanitiser solidifying, and we're willing to take a chance again. 

For many, this is excellent news, but not for all. For those who are immunocompromised (500,000 people UK) or clinically extremely vulnerable (3.7m people UK), the road to freedom has many potholes. They have a greater risk of catching Covid, and they are more likely to go to a hospital, more likely to be admitted to ICU, and face an increased risk of dying. Life for this minority is still restricted. As the majority move on, is there a risk of people being left behind?

We reached out to some affected listeners and spoke with them about the impact and their current lives. Sarah Baxter, who works for a UK bank and Gareth Berliner, is an actor and comedian. Both are immunocompromised. They tell us about asking a fellow train passenger to put on their mask, of donating work clothes to charity in March 20202, realising future office visits will be few. There's even a fortuitous career change as the new workplace adheres to strict Covid protocols. As well as Sarah and Gareth, we hear from Christina Clegg in the UK and Denise Rei and Jen Risser in the USA. All five of our guests talk of the early days of the pandemic, when for a few months, we were unified when we all faced a significant health risk.  

The stats might not lead the news bulletin, but Covid-19 is still here. What can society and individuals do to avoid a twin-track society? How do we consider the needs of the few whilst allowing the many to continue?

Links

Join Zoe Covid info, trackers and stats

Guardian Jan 2022 first article "More people will die fears."

Guardian Jan 2022 second article "Disabled people Plan B restrictions."

Colin Angus on Twitter Sheffield University | Health inequalities | COVID-19 | Data visualisation 

Selected info 

• Those with underlying health conditions are not also at death's door. 
• One-third of the UK adult population have hypertension (high blood pressure)
• Just under a third are obese.
• Once you get past your mid-50s, chances are you have a long-term health condition. By the time you reach your 70s, you have to be extremely lucky not to.

ICNARC Statistics and research Intensive Care National Audit and Research Centre. Levels of dependency prior to admission to acute care (Dec 2021) report shows 89.5% lived without assistance, 10.4% had some assistance, 0.4% had total assistance. 

Sarah Baxter on Twitter

Gareth Berliner on Twitter

Transcript

Sarah  0:11  
I might come across as a very level headed person, I'm absolutely furious. I'm a seething ball of anger inside about all of this.

Gareth  0:18  
 You could support us more because we're helping you like that's why I felt like during the whole pandemic, we've shielded, we're helping you, the disabled and the vulnerable are helping you when they lock themselves away.

Simon Minty  0:37  
Hello, and welcome to The Way We Roll with me Simon, Minty, 

Phil Friend  0:41  
And me Phil Friend, 

Simon Minty  0:42  
restrictions around COVID are being lifted here in the UK, the government has determined we are on the road to freedom and mask-wearing can be relaxed and we can all meet again,

Phil Friend  0:53  
this is with a backdrop of numbers and positive cases having haven't reduced completely not everyone is vaccinated, and the variant Omicron arrived less than two months ago.

Simon Minty  1:04  
Still, for many this is good news after two years of restrictions and life can finally get back to something like normal. And all the good things we've learned will remain of course, as we head into what will be the sorry, new normal.

Phil Friend  1:18  
However, there are a group of people who aren't so pleased. For people who are immunocompromised, and that is upwards of half a million in the UK, and 3.7 million people if you include people clinically extremely vulnerable. This is a very worrying time. Firstly, they have a greater risk in catching COVID. They are also more likely to go to the hospital with COVID-19. And they're more likely to be admitted to ICU. And at an increased risk of death and dying as a result of the virus.

Simon Minty  2:05  
If that's not enough, are we heading into a twin-track society those who are vaccinated at regular immunity or indeed just don't care? They get out and about and those for whom the vaccine has no impact are left at greater risk. So they can't mix and they may have to stay at home.

Phil Friend  2:22  
But how do we balance this? Do the 50 million people stay in so that the 4 million stay safe? What about the mental health of everyone under restrictions? And what about the economy?

Simon Minty  2:33  
Regular listener Sarah Baxter dropped us a line and suggested we explore the issue of people who are immunocompromised. Now that restrictions are being lifted. We have Sarah with us. Hi there. Sarah

Sarah  2:45  
Hi there and I'm very happy to be here today.

Phil Friend  2:48  
And we also have comedian and actor Gareth Berliner. And he's with us too. Hi, Gareth

Gareth  2:54  
Hi, guys. Great to be here today

Simon Minty  2:55  
 Later on, we'll be hearing from a few more of you who have actually sent this audio clip. So thank you for that. And now first off, Sarah, how is it very hard to encapsulate in an answer. But how are the last two years been for you? Because of COVID. And your condition

Sarah  3:14  
It has been a funny two years, hasn't it? Really? It's been quite extraordinary. I would say that. I mean, right from the beginning, I sort of felt that having a chronic illness kind of prepared me for it. Because having a chronic illness, a variable condition. I was used to having periods of my life when I was on my own and we stay and used to that of God, I really did want to go out today, but I can't. I'm quite resourceful, you know, self sufficient resilient, sort of a person, all all of that born by having like a chronic illness for the last, you know, 35 years. So I was ready. And I think more ready than some of my Dare I say normal friends were because they seem to take the isolation, much harder. Whereas I was able to sort of step through it, knowing that it was the safest thing for me to do. So it's been, you know, up and down. It's not all sunshine and roses about it's been really difficult for lots of people, myself included. But you know, I've got through,

Simon Minty  4:18  
it's a common thing we've heard in this sort of your bit more prepared than everyone and you're nodding, Gareth, is this the last two years for you? 

Gareth  4:26  
Yeah, I mean, I can,I can totally echo a lot of what Sarah said. And it certainly feels like it's been a roller coaster because I've had moments where I worked. I worked overseas for a period of kind of the last two years for about three months. And because I was working within kind of the television industry, there was constant testing. And I was working in a country where you needed a COVID pass to get into a venue. And I don't fully know where I where I stand on exactly my conviction on how people should behave. With regard to these matters, I certainly know I felt incredibly safe. Not in the UK under a different rule of law. But I recognise People's Choice, you know, choice. So I feel I've felt very compromised, not just immunocompromised over the last two years. 

Phil Friend  5:21  
Was that Gareth? Because the rules were clear and enforced. And people were in quotes, going along with that, obeying it, and so on you were in France.

Gareth  5:33  
Yeah, I mean, but they still had this, you know, you still had anti vaxxers In France, and you had still had people who objected to the law. Just for me, it meant I had a greater level of feeling safe. I think that's the problem here is that I feel like we, the disabled, vulnerable, immune compromised, are being asked mostly to make the sacrifice for the good of everybody else. 

Simon Minty  6:03  
Rather than the everybody making a bit of a sacrifice to allow it.

Gareth  6:09  
Yeah, of being a community. But you know, the, the social model of disability would argue that that's the same thing. If society looked around and went, Well, how can we make everything around here much safer, because of COVID for disabled people in particular? You know, we might be in a better position then.

Phil Friend  6:28  
So Sarah's point about mask wearing and so on, if people wore masks routinely, like they do in many other countries, particularly Asia, I think that would be good for all of us. We wouldn't be seeing them as a as a sacrifice, because everybody be doing it. Yeah. Okay.

Simon Minty  6:48  
Can I add to that? I mean, Sarah, you mentioned a couple times, and I hate to do this, but in terms of the your condition, what might it be? And what sort of precautions did you take, particularly during the height of it?

Sarah  7:00  
And so I have multiple sclerosis. And I am on a drug which suppresses my immune system, and suppresses the same part of the immune system that would form go into the battle for me against COVID. So it was like, Oh, of course, it does have, you know, just my luck, and really, continuing to take that drug has meant I've had to make a decision between, you know, my safety in terms of COVID versus the chance of B, what would happen if I came off this drug to be more resilient to COVID? What would that mean in terms of disability progression. So I've had to take a risk based approach to this. And I've always thought that my safety, whether that be from disability progression, or COVID, is my like responsibility. So I will, you know, wear a mask, I will I wear it on the bus, or were aware in the shop or wear it on the train. Even when I don't need to wear it in, I just wear it, when I'm not when I have not breathe in fresh air outside, I will wear the mask. And that is a choice I will make for myself for a long time. But I do realise there's kind of this. So the consequence of me taking this immunosuppressant for my long term health this meant that I've I'm experiencing this kind of new, sort of it's, it's almost like a new disability and that I'm now excluded more from spaces, which is and I think particularly for me, the workspace. So although I'm under no pressure from my employer to return to work, we've all worked remotely, we've been very lucky to be able to do that. And my team mostly there all over the country anyway, says there's not a question that I need to return to on get on a train for an hour ago from the Essex into the city. It's more, you know, how am I excluded in terms of my career, all those sort of, you know, they call them the water cooler conversations you have with people. So really, my my precautions that I took was just people avoidance, you know, I live by myself. So there's no other humans in here. Or biohazards it's just me and I. And I've also this is going to sound awful, but I've avoided children and young people because they have tended to be the not vaccinated, although, I don't even know if vaccines are that important anymore. Because, you know, we all know in terms of the numbers that COVID can resist them. So I feel that testing and is perhaps has swung to be more important now.

Phil Friend  9:44  
What intrigued me was you're living on on your own so therefore, the family kind of stuff isn't so applying to you. What about you Gareth because you have a partner? What's the impact been on your friends and family? In relation to you having to be the person you're being because of Covid

Gareth  10:04  
Well, obviously, not obviously, but my family down in Brighton, most of the rest of my family, my brother and his kids and my parents, so we've seen them far less than we might have otherwise seen them. My parents are elderly as well. So there's that concern that they have their own vulnerabilities. It's really funny, like the works, but I mean, it's really, it's pretty much caused me to do an about turn on where my career's been at prior to the two years. Because I feel like the TV and film industry right now is a safer place for me, just because they're, you know, they can't get insurance for production now, because of the risk of COVID, without everyone testing every week, and that becoming part of the budget. So it's actually in my interest, if I'm going to work at all, and that's going to be outside and in, in an industry, that's where I feel safer. Whereas the comedy circuit, it's been a really a battle for me with with my community in a way, and even an audience like for years, I've never felt, I've never known how my audience as a group thinks or feels about anything in politics. And I've been quite happy to perform for them. But the pandemic has brought about in me some anger, at some attitudes in public. And now, I don't know if I want to go into a club that doesn't care about me to get all the acts tested before a gig in the same way the industry, the film and TV industry might. And I don't know if I want to perform to an audience, where some of them don't believe in vaccines believe that the vulnerable and disabled people should just lock themselves up and deal with it themselves. And get on with it. So it's really for me, it's it's brought a lot, a lot of thought with regard career and work changes.

Phil Friend  12:09  
And what just quickly, what's the impairment issue for you then Sarah was talking about MS.

Gareth  12:14  
So so I'm immunocompromised, I have something called Crohn's disease. And then I have various other conditions as a result of the Crohn's. But then I also have something called a Hickman line in my chest. And that's a point of entry that puts me at risk of sepsis, which, again, immunocompromised I mean, for me, I felt like my greatest risk during the pandemic was when we were at the height of deaths and ICUs, I would have been left to die. And I kind of know that. And so that's when my wife and myself were most afraid of me getting anything or being there anyone. Because I you know, if you could choose between Gareth, who's at risk, and he's married, and he's got no kids, and the guy to my right, who's married, he's got four kids, maybe he's got grandkids, you know, I just know how I think moral choices are made.

Sarah  13:16  
I mean to Gareth's point? Oh, my God did I carry a lot of fear with me and I, I had I packed a bag, like a go bag, if I had to go to hospital, I'm going to need all these things. In medical bits and bobs and I also wrote a letter which I tucked in the bag, and that was for a doctor, so that they if I was ventilated, they could. And I had a picture they could read about me and I, when I said, you know, it was about I felt I needed to prove that I lived a life of purpose. And just because I was living by myself and don't have children, I was still worth saving. And I showed that letter a long time later to my friend who's a consultant in in a&e, and he cried  he cried because he just said, I can't believe you wrote that. And I thought I thought I had to, to make people know who I was and that I was worth it. Because we are we are we are vulnerable. And if you have to make choices, who do you choose? And that I thought doctors might be pushed, pushed to make those choices when they weren't enough when there weren't enough ventilators in the country.

Phil Friend  14:25  
It's this vulnerable but we're not but we're also valuable. 

Sarah  14:29  
Exactly I didn't I wanted someone who didn't know me to see that I was valued.

Simon Minty  14:36  
I was gonna say the early days. Do you remember there's a lot of people particularly with learning difficulties were asked to sign Do Not Resuscitate notices. There was a you've taken me right back to the beginning. There was almost value judgments. There was a big discussion about what advice doctors would be given in terms of the body and its value. Goodness me.

Phil Friend  14:56  
I mean is thinking of it from a medical point of view. Do these are really difficult decisions to make at that point, isn't it as Gareth was saying at the height of it, when everything was up in the air and nobody to be fair, nobody quite knew what was going on. Everyone was charging about from pillar to post trying to make sense of everything. Disabled people then viewed as less valuable than other groups. And, you know,

Simon Minty  15:21  
the one advantage Gareth had over all of us is Kieraner, who is his wife. Now, if I wanted someone to go into battle for me, I would get Kieraner any day of the week she is awesome. But I remember speaking to both of you early doors, and that both of your lives I mean, she had to stop everything, because otherwise you do. I mean,

Gareth  15:41  
Yeah. Yeah. I mean, she had to be careful, for my sake, totally. And we were going a little bit mad in lockdown. I mean, I don't know, I don't know, Sarah, where you've been at with regard to choices. I mean, my choices have gone up and down between, you know, like I have gone out in public, I have gone out and eaten to a restaurant, I've had to make choices on my risk. Certainly, those choices have got a little bit easier than they were when we're talking about ICUs being full. So I feel like I've been afforded treats socially, to myself, that I couldn't have made a year ago, or more.

Sarah  16:29  
I mean, I know that I have to emerge into society. Because for myself and society sake, I've got a lot to do. And so I decided, I'd throw myself into the deep end, and I'd start an acting class with my local theatre, when I turned up the first day with my mask, and I was in a room with like, over 30 people, and I lasted like two minutes because I just can't do it. And then I spoke to the organisers, and they said, Oh, we were so sorry, you've been oversubscribed. But next week, it'll be better, there'll be fewer people. So I did go back. And I mean, that has been a massive game changer for me, because it's a safe space that is very inclusive. I've met a lot of friends, we've continued on into the next term. And their friends that I have met, they do and are happy to do lateral flow test, they tell me we've done our flow test. And then the teacher lets me work with those people, because I know they are safe. But I do feel I've had to split people that I know into safe, not safe. And that so I've had to sort of step through some choices. So I am starting to unlock myself. But in a very measured way, with the help with people like around when your honest and I did, I caught a train the other day. And it was a young chap, and he got on I had my mask on he didn't have a mask on. He did not have his mask on and I said oh, I'm sorry, do you have a mask because he was booked next to me? And he said I'm really sorry, I'm, I'm exempt on that. Oh, okay. And I said, it's just I'm on immunosuppressants. I'm just a bit worried. He said I've got a mask I will wear it if you want me to so he put his mask on. And then we got chatting he was a lovely guy, absolutely lovely. Worked in health care was triple jabbed. They said, um, and then but he started to get a bit breathless. I said, Look, just take the mask off. You know, I've had four ja§bs now you said you've had three. That's not I'm not going to be like, just just take your mask off because I don't want to be that person that you're you're experiencing discomfort now in keeping me safe. And then you know, took his mask off and everyone was fine. You know, just it was but it was about having that conversation with him. He was looking at me not just that middle aged lady it was perfectly fine.

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Sarah  18:45  
It's that way you have to step through. I think by being honest.

Simon Minty  18:48  
That's amazing, Sarah. I mean, I applaud you  for the courage because you know, you never know what response you're going to get to that. And but I love the fact that both of you navigated it and you alluded to my next question, maybe start with you, Gareth, right here. And now as the restrictions are changing. Are you feeling supported? What are your thoughts about the next year or two? Are you feeling you could get left behind for want of a better phrase?

Gareth  19:22  
I feel like I've just had COVID I had COVID Yeah. And it was Omicron. I know it was Omicron because I think I would have had a much harder time if it had have been Delta. And I'm triple jabbed and boosted and actually initially I didn't get it from Kieraner she she got it she was on an acting job and someone there got it. But she actually the night before, I guess she began shedding viral load or wherever. She told me not to come to bed. She just had a feeling and I didn't so I never got it. And then I got it from a close contact outside, you know of our home, I went to two places I went to the gym because I'm trying to get fit but I wear a mask. And I went to the theatre socially distanced wearing a mask, and I still picked it up from there. I'm in this really weird precipice at the moment, where I feel a level of cockiness almost, or a little bit of a slight superpower. Briefly, which I realise I recognise, I'm a bit naive to make that assumption. I think I'm more worried as someone who's vulnerable, my greater worries are when the hospitals are chock full.

Phil Friend  20:50  
Do either of you see your working environments or the way that work changing? Do you think you're Sarah, let me ask you first, do you think your future looks like you're going to be working from home all the time? Or do you see a future where you will be able to go back?

Sarah  21:08  
Oh, no, I definitely think I'll be working from home the whole time after after the first lockdown back in whenever was that was it 2020, I can't remember, I took all my work clothes to the charity shop and donated them and said, I'm never going back. I'm happy to work from home. But if I do need to go into work, because we have a whole point in our team, we say we are going to travel, it has to be for purpose, because we all we're all very committed to our carbon footprint. So so if I did need to go to work, I would ask if I could work if I could travel off peak. So arrive later, I would ask if I could stay overnight in hotels, so I could then travel off peak the next day. And they'd be really flexible with that, I think I think they'd be very supportive of that. I think my worry is of what if I have to go into building but I don't know. So I would need to sort of have someone say, well, you're going to be in this building today. And but we're going to be in this meeting room. And it's this size, and this is how it will be set up. I need more confidence around the space to know what it is that I'm stepping through. And I would hope I mean, my office is currently on the 16th floor and I'm I'm not keen on being in the lift for that long, but I think it's just talking with, my, my line manager and they they are sensible and supportive.

Phil Friend  22:30  
So it kind of sounds like for you at least Sarah and we'll come to Gareth in a second. But it's an extension of adjustments you

Sarah  22:38  
It is I've been talking to people my employer. So this is this is a new sort of adjustment you need to make for people is a workplace adjustment for for people like myself.

Phil Friend  22:51  
Yeah. Gareth, you were saying earlier that because of the situation, you know, comedian and actor and so on, you're being almost pushed into the film theatre side more than the comedy circuit side because of the safety but you're also saying that there's a moral dimension for you an ethical one about the way comedy clubs work

Gareth  23:12  
It is just a weird one in that, you know, I I Sarah mentioned earlier sort of being people who were better prepared in a way for this to happen. So I think when you have a disability or vulnerable vulnerability or a chronic illness, you are used to your life stopping on a dime for periods of time. So you develop an adaptabilty and resistance which I have or had. So my career has been stopped, countless times gigging then, I've got to cancel my gigs. Maybe in cancelling my gigs. I've burned a bridge of that promoter, because I'm not reliable. So it's, it's always been hard. And I think during the pandemic, when my colleagues experienced that same hardship, and I saw them take it really hard, some of them psychologically, I felt briefly like even though it was terrible, they were going through it like, oh, wow, we're all in this we're actually in this together, they actually get it they actually understand my experience. And then as the barriers started coming back down, they went I don't give a shit anyway, so I'm back to work, right? Because I'm fine. So I got I just got to get out and gig loads because I don't care. Because I need to make up for the money I lost. So I'm pushing it harder than so I just just have found myself in kind of falling out of love with with something I've loved doing. And seeing for myself. I mean, to be fair, I've had a greater success in a shorter space of time as an actor than as a stand up, I would say. So it's it's still a sensible choice to go, well, maybe, you know, push in there. And the voiceover same thing. That's something I can do from home. So it's more looking at things that I can either do at home, or do solo projects like Arts Council theatre based projects, but not looking particularly at the moment like, I really want to join the circuit again.

Simon Minty  25:22  
Sarah,, you suggested this as an idea, and we are grateful, and we've had a great response. Now, was there a single issue behind that? It is something that you said, is it just that you think people should be talking about this more? Or is there something that sort of rattling around your head that you want me to express?

Sarah  25:37  
I think it's just because we are by very nature invisible, it's not like you take immunosuppressants, and suddenly you start glowing pink, because I want people to, you know, you have you see people in the park sometimes and they they're walking the dog, and the dogs got like a special coloured like lead or little little jacket on, which says, Please give me space. Because the, you know, the dogs bit bighty or anxious, and I kind of feel like I need a little jacket or so please give me space because I am a bit bitey and anxious about you being too close to me. But I think I think it's because it's this. I feel like people like myself and Gareth we have we're gonna have to retreat again from society. But I guess it's more about just making me other people more visible in the hope that people respond to that, in the same way as the guy did on the train, you know, positively with understanding and compassion.

Simon Minty  26:33  
I think you make a huge point. I want to even narrow it down. One of the people we're gonna hear from later on, Jen mentioned in the US or the guidance, ignored people who were immuno suppressed. The guidance was just for everybody else. Is that the same for you, too. So when the government's guide in this, they don't mention enough about the effect on you?

Sarah  26:53  
Yeah, I mean, I don't know about Gareth. But my goodness was Matt Hancock writing to me a lot. I was getting like a letter a week from signed Matt, all about your, your clinically, you should be shielding, you should be shielding, you should be shielding. So I got emails, texts, you know, multiple times from the government like personal advice. But in the sort of general, the general, you know, the briefings that we see on telly or in the more, I don't see any mention of it. And it's to my my employer's credit that they recently put out a statement about returning to the office and had a whole separate section for people who are immunocompromised. So they absolutely called it out right from the beginning.

Gareth  27:36  
I don't think we can kid ourselves on where Tory policies were going and have been going for a number of years. They were gonna go with eugenics here. They weren't. They talked about it in even the way they talked about Boris surviving COVID. He was a fighter. He was a survivor. He was a strong man who fought you know that that kind of sulliess anyone that passed away is just they were pathetic. They they really make an effort. They were looking at the Swedish model. And I noticed and I and I can't have been alone on this. But I really feel like I noticed there was a two week period before the first lockdown, where he stopped mentioning disabled and vulnerable and just kind of mentioned the elderly. There is a little bit of a, I'm just going to inadvertently forget and the elderly, not that I want anyone old to die, but we all go oh, well, they are on, you know, they're closer to the pathway. That's that's what we think in our heads. You know, that's part of what you think. And that's, and I feel like they tried to fob off the rest of the public, in forgetting about vulnerable and disabled people. And I think that's been the case throughout the pandemic, that that they are not talking about it. And we know that people died in care homes, vulnerable people died in care homes, we know that they sent people back without testing them. I think those are choices that you can't make by accident. Like I feel they're really awful choices. But it seems uncanny that everyone forgot, every hospital forgot when they sent people back.

Sarah  29:25  
As I have felt a little bit like I could be and people like me could be collateral damage. So for the sake of the majority, if we lose this minority of people who may or may not be taxpayers, but you know, a lot of us are. It was it was all it was fair game. And that's because of the narratives that the society and the government have abandoned, disabled people being less than and other and I'm, I'm very sick of that.

Simon Minty  29:55  
Stay with us listener at the end. Just a couple of myths because this is phrase where people go someone died of COVID oh do they have something as though once you've said that, they will, there you go. And it's horrific. I hate the whole concept of that because it's it sullies a brilliant word it devalues. And I remember having debates with what I thought were very liberal, open minded friends in the very early days, who just there's this whole side of him, it's immensely selfish and okay, and then go, Well, hang on, they've got kids, they're not getting any money, they're terrified, they slip through the crack. And that does make you selfish, and I can kind of get where they're coming from, but it was, it was a no win place.

Sarah  30:34  
And I totally understand that there are, there are people in this country who you know, have, you have to work, you don't have the sort of don't have the same resources to sort of fall back on I absolutely get it and I think, but that's not the fault of the of the of people with disability, that's the fault of like the government, they're not not giving these people a safety net, so that they can make choices for themselves to self isolate. And it's a terrible situation to put people in,

Phil Friend  30:59  
One of the thoughts that run through my head is that both of you are pursuing careers in in, you know, in quotes, sort of middle class, well educated people. And so what about an immune suppressed individual in I don't know, the 13th floor of a council flat with four kids. And you know what I mean, I wonder what life is like for them, because you're describing horrific situations that you're having to manage. And I wonder what, and we know there are a lot of people in those environments, in those situations were really struggling. Perhaps we could spend that what time we have left, thinking about what what we could do that would make a real difference to both of you. And in some ways, you've commented along the way about what some of those things might be. But it might be a good idea now to kind of come up with your three points sort of wish list, if we could change these three things, it would make a difference to those of you managing these very complex issues. As well as I think Sarah your point, the general population of disabled people who also feel very, very worried about what's going on around them with COVID. and stuff, who wants to start what you what would be your three,

Gareth  32:12  
I can I can offer if I can offer a few I don't know if its exactly three what first of all, I would collect all of the money defrauded from the government in the PPE scandal plus all of the tax owed from people in higher positions than the average working class person. And I would commit now that all of that money, when we find it will go on the new extreme costs to mental health of the nation. And so we're just going to invest this money in therapies, we're not we're not going to talk about doing anything else with it, because we were prepared to lose it, because we didn't care about getting it back. So now we know what we're going to do that

Phil Friend  32:58  
It's a great start Gareth

Gareth  33:02  
I'm very, very, very angry.

Phil Friend  33:06  
A revolutionary, yeah,

Gareth  33:07  
it's anger is a good motivator. I think, also, I would ask that if we get to a level under which the government can write to me a letter that says we would suggest, but don't want to commit to saying that you should lock yourself up. I would say then, if you want to say for the good, you know, for the good of society, you need to lock this small group away for a period of time, compensate this small group in some way, whether that be access to services while we're shielding income, while we're shielding commitment to not lose your job from your employer, while we're shielding. There were so many people that wanted to throw us away and lock, you know, lock, lock the key away, that I feel like okay, if we get really hit hard and you feel next time, you can't lock the country down, then if you want us to make that sacrifice again, because really, we have no choice, cuz we're vulnerable, then then look after us, because you'll actually be saving money like the economy will keep going for a period, you'll be okay. So actually, you could support us more because we're helping you like that's why I felt like during the whole pandemic, we've shielded we're helping you the disabled and the vulnerable are helping you when they lock themselves away. And that's what I think a lot of in not invulnerable, but people who didn't, who didn't feel were who weren't the same and that's how I feel they felt and my number three it would be nice to have some kind of vaccine passport system because my argument there is and I understand everybody's fear of big Brother an identity. I'm sorry, What world are you living in? If you're using a computer, if you've got a phone, we've got our ID system is in place, let's not kid ourselves that suddenly actually having to have an ID card would mean that we now have identity politics. We've already got it. So that's, that's where I'm at.

Simon Minty  35:22  
Thank you, Gareth. And I liked your bit about we were helping because the whole point of the full lockdown was to stop all that or many things, but to stop the beds being caught up in the NHS. And if you're saying we've got to carry on doing that to stop it, then where's that sort of balance? Sarah, you alluded to one of yours, which was testing, testing, testing. Is that is that your number one? So

Sarah  35:44  
I might come across as a very level headed person I'm§ absolutely furious, I'm a seething ball of anger inside about all of this. So yes, I think testing should continue to be available for free if people choose to test. I'm not a person who advocates evryone should have a vaccine, because I believe in your body autonomy, and you can choose what's right for you. But yeah, testing is something that is I mean, it's, it's a bit icky. It's just so simple, and can really help protect a lot of people. I also say that I would like to take some of the money that has been squandered, misspent and fund science. Because science has saved us with this. I don't believe in many things. But I've even I believe in Professor Whitty and Jonathan Van Tam, and this will happen again, pandemics, pandemic X is coming, it's coming because of the way the way the world is that we are putting pressure on natural resources and diseases will cross over from pathogens, no innocent furry creature, A to innocent furryy creature B to human and that that will happen. And we need to do deeply invest in horizon scanning for all of this to see what is next. And I take comfort from the fact that there are brilliant people out there like Professor Sara Gilbert, who got on it, and within days had sequenced, you know, put together her design for the for the the AstraZeneca vaccine. And we really need to make sure given the the shock that education has had, that we are funding those new scientists that are going to come up and help us fight the next one.

Phil Friend  37:29  
I completely i i watched her Dimbleby lecture, one of the was it Dimbleby I think she gave a lecture anyway about the work they were doing, what an impressive individual she is. But she said that we should treat science in this area like we do the army. We have an army that's invested in hugely, just in case there's a war. So we should be investing the same sums in science just in case something like this happens. That was one of our lines, I've always remembered. That is such a good way of explaining. But interesting, neither of you said, we want to cure for MS or we want to cure for Crohn's disease, what you're saying is we want to get this bloody science, right so that we can live open and

Sarah  38:18  
MS is an important part of my identity. It's and I could ask for that it still doesn't guarantee I won't be on a ventilator because COVID takes no prisoners. Really. It's got no rhyme or reason to it. Yeah.

Phil Friend  38:33  
Well, we are sadly very close to the end of the time we have but Simon was there anything you wanted to say

Simon Minty  38:42  
No just to say thank you both for being so articulate, and eloquent and amazingly brilliant ideas that you know, this stuff you clearly thought about and which really helpful and really useful. I also I'm struck by your point, Sarah, that you're on a podcast so you're gonna talk about to people listening but deep down inside those fury and there's frustration and, and I think that is part of it. It's yeah, so thank you for anyway, then want to say thank you both.

Phil Friend  39:13  
I think what would you do the three well, I don't know whether someone wants to join us but I'm quite happy to join Sarah and and Gareth in a scurrilous little plot where we sit in dark rooms and think about the revolution. We get our Che Guevara T shirts out, go for it.

Simon Minty  39:33  
But we got to do it online. So there's no big crowds as it were,that's what I'm saying

Phil Friend  39:37  
anyway, it's been an absolute pleasure.

Sarah  39:40  
It really it really has. Thank you. Thank you, Gareth.

Gareth  39:42  
Otherwise, Sarah, and yeah, good to see you guys.

Announcer  39:45  
You're listening toThe Way We Roll with Simon Minty and Phil Friend.

Simon Minty  39:50  
We have a listeners corner we did a shout out for the show beforehand to say if you've got any thoughts or comments we couldn't have everybody on the show partly where they live but also timings so on, we heard from three of you. Thank you so much. These, these people have recorded audio clips, which we're going to play for you now. First up is Christina Clegg, and she is explaining her situation.

Christina  40:15  
I'm immunosuppressed. And this means that my immune system doesn't work properly. And that's because of medication that I need to take. At the beginning of the pandemic, I was identified as clinically extremely vulnerable and needed to shield. I don't see myself as vulnerable I'm vulnerable to COVID. I was working as a primary teacher before the pandemic. So it's been a huge lifestyle change. For me. Being a shielder means changing everything that you ever knew, its impacts all the family that you live with. At the beginning, beginning there was a collective effort support slowly became available, you just found a new way to live. But as COVID restrictions were eased, anxiety crept in, and I realised that not much would change for me. immunosuppressed people don't always mount for immune response to the vaccine. This is really scary, because I don't know how effective my vaccinations have been. I don't know whether I'm safe or not. The official shielding period ended last year, and the guidance that we received was vague and contradictory. On the one hand, it says that we can now get on with life. But on the other hand, it suggests that we might like to take extra precautions, the HSE goes as far to say, as to say we should still be working from home. As restrictions ease and with less protections in place, how does my vulnerable status protect me, or include me in a world that's returning to a new normal, my argument is that our risk is unclear. And easing of Plan B effectively means more isolation for me, and nobody seems to be addressing it. I want society to know who we really are, to recognise our dilemma. We've all but been forgotten, viewed as a burden. And I'm starting to recognise a growing lack of tolerance in society for people who are viewed as unable to function, not normal. And this view is dangerous. We need recognition, a platform for discussion to discuss how policy and education for the wider community can allow us to move forward. I'm starting off by writing to my MP and I urge others to do the same.

Phil Friend  42:11  
So that was Christina, sharing her thoughts on how her life has been affected. Now let's listen to Denise who's from America. And this is what she has to say.

Denise  42:21  
Hello, my name is Denise. Thank you for having me on the show, I have a form of primary immune deficiency it's genetic condition. And basic explanation is that it's easier for me to get infections, it's harder for me to shake them off. And they tend to do more damage than they do to the average person. There are treatments, there's no cure. So even before the pandemic, I tried really hard not to get infections. And some of the precautionary measures like hand sanitizer and avoiding crowds and wearing masks, are things that I did all along. The pandemic has magnified it a lot though. I'm in California, they've gone above and beyond the federal regulations at times to try to keep people safe. I think they're really trying. But other states, every state makes their own rules. So other states have responded really differently. And the federal response has been really inconsistent. They finally recommended surgical and 95 masks like last month, but countries like Germany and South Korea made those same recommendations a year ago. So we're a little behind the times in some respect. For me, the most positive thing has been the development of more virtual events. Even without the pandemic, there are a lot of reasons somebody might not be able to go to a concert or social event in person. And when it's online, it allows a lot more people to participate and feel connected to their world. And I really hope that doesn't go away. The worst thing for me has been the isolation. My friends and family check in with me on email and phone all the time. But I haven't been able to see my family in person in over two years. They have health concerns. It's not safe for them to get on a plane any more than it safe for me. I saw my best friend for my birthday. But that's the only friend that I've seen in two years. Every holiday spent alone. That is very lonely, and there's really no way for it not to be lonely for me.

Simon Minty  44:19  
Thank you, Denise. I want to say a quick thank you to Beth Alderman. We haven't managed to squeeze you in Beth and I'm really sorry. But thank you so much. And I hope the show has done credit to what you said to us. And finally, Jen Reisser who is also in the USA in Virginia. We've got our lovely Trisha, who you heard at the top of the shows is reading Jen's piece which she sent in. And so we'll hear about now.

Announcer  44:48  
I have cartilage hair hyperplasia, otherwise known as CHH which is a form of dwarfism. In addition to short stature, those with CHH have varying levels of immune deficiency I seem to have an immune system by name only. Thus my entire life has been spent avoiding germs and having been through chemo, I'm well aware of the more stringent precautions. So when the pandemic first hit, and no one was touching anything, and everyone was cleaning everything from light switches to door handles, I thought, finally, hallelujah, this is amazing. Thus the majority of precautions are nothing new to me, minus the wearing of masks and being scared of touching mail. That was a new one. life as I knew it completely altered as of March 2020. For the first time ever in my working life, I began to work from home. Social activities with my book group colleagues and friends and family completely ceased. As a true introvert. This delighted me for I'd say, the first year, as an editor working from home came naturally, my stress levels were the lowest they'd ever been. My sleep improved 100% however, as the pandemic went on, it became clear that a large swath of the US population wasn't going to get vaccinated, and new variants continued to emerge. So it's become increasingly difficult for me to keep a positive attitude about the current situation, with mask mandates long gone, and the omachron variants still raging where I live, I have essentially been in lockdown for over a month now. And two years into it. It's just beyond frustrating. For the past two years, I've only eaten out twice, I am sick of cooking. And I sincerely miss being with others laughing, catching up with friends, seeing family, etc. My closest family and friends, colleagues, they've all been very cognizant of my increased susceptibility to COVID. And their caring concern around me has been incredibly heartwarming. However, a fair number of my close family fall into the anti Vaxxer camp. And this has created enormous issues and I have not been able to see them for the past two years. From my personal experience in the US, yes, I have felt overlooked. The overwhelming majority of announcements made throughout the pandemic from the Centres for Disease Control and Prevention have been blanket announcements over and over again. Such as if you're fully vaccinated, you'll be fine, which is factually incorrect for someone like me, because although I've had four vaccinations, now, I have very little antibody reaction due to my basically non existent immune system. It's incredibly frustrating and rather soul depleting when mandate after mandate doesn't apply to you, you really begin to feel forgotten, especially as I've been sheltering alone at home for the past two years. And the case count isn't getting any better where I live. As for the future, it's definitely a new normal, but having had cancer, this is new normal round two. For me, I'm keeping a positive spin on what that entails. For instance, having a more flexible work schedule in terms of being able to work from home. And as for travel, which I did frequently for work before the pandemic, I think it just means doing things a little differently. I doubt there'll be a time in the future when I don't wear a mask on an aeroplane. Regardless of how far out we are from the pandemic. When travelling, at least for the foreseeable future, I see myself heading for parks versus crowded indoor venues, and being more careful in terms of eating inside and attending indoor events. And there's little doubt that I will be spraying down the hotel room from door handle to coffee machine to bathroom. And I likely just tossed them out out the window. As for the anti vaxxers or those who believe freedoms have been eroded, or that COVID isn't serious. In my mind, they're just a waste of space. In my country, it's all come down to this notion of it's my right not to get vaccinated, or for the religious, God will protect me, which is fine. But I think God would prefer you use your God given common sense. I just can't understand it. No one is saying it's the right to drive drunk here. Or it's my personal freedom to run a red light, both instances where you'd be putting others at risk. So I don't see spreading COVID any differently because for someone like me, or anyone undergoing chemo, or those who have had an organ transplant, we're relying on the rest of you to protect us. It does make me worried for the future of all vaccines, as what's to say that a huge number of the global population won't take vaccines after this. And I can't help but wonder what that means in terms of what's coming next. We've been able to eradicate so many horrible diseases, but I do wonder if that's a thing of the past. If I could have one wish, assuming COVID stays, it would be for vaccine mandates. But as I know that won't happen, at least where I live, then I hope they soon have medicines widely available for the immunocompromised should we get COVID In the future, as I really do not want to stay home For the next two years,

Phil Friend  50:03  
okay, so I'm a bit different the listeners corner this week, because they were talking to us, which is lovely. And can I just say to all of you listening, if you want to contribute in that way ie send us a very short couple of minutes worth on your phone or whatever, please do send it through to us at our email address, which is mintyandfriend@gmail.com.

Simon Minty  50:27  
And thank you, for all of you who contact this I was struck by the there's some commonality as well as Gareth and Sarah in this. Don't forget us still include us? Yes, there's been some good change. And the things like testing, which is critical, but there's clearly differences in the US and the UK and around the world as well.

Phil Friend  50:48  
Yeah, and I think just reflecting back on something Simon, you were talking about and came out from Gareth, Sarah to was this idea that people who are vulnerable, because they have other conditions would have died anyway, kind of thing. We know that's completely rubbish. Because many people in hospitals, for example, were in there for routine operations, or whatever it was, and then they got COVID. And that did for them, 

Simon Minty  51:12  
You'vepressed my button, right here wego . So someone says, oh, so and so died from COVID. And people go oh did they have something already though it is this immediate dismissal as though this was there's a really insidious piece that came up I spotted it on Twitter, and someone asked for a Freedom of Information request from the Office of National Statistics, asking for inverted commas "true death toll" of COVID. The argument being they had that was if you already had something that was different 160,000 people died from COVID had something else, but those who had nothing is about 17,000. The concept that because you had something else, therefore, I'm going to be horribly flippant. It's something you had coming. This is nonsense. A third of the adult population have got hypertension, high blood pressure, third are obese. I read some stuff about from Colin Angus ,at Sheffield Uni, working in health inequalities, he says this concept is nonsense. It's disgusting. If you pass 50 You've probably got a long term health condition if you're 70 you're extremely lucky if you haven't. And it's something like 99.9% of people who went into hospital and then died with COVID they were living independent lives. About 9% had some sort of support. So we're tiny percentages here. It bugs me that it's almost it devalues people it and you can have a condition that wasn't going to kill you. You were living your life COVID came along, tipped you over and that killed you.

Phil Friend  52:57  
It's been a really interesting show and I'm glad we've I hope that we've helped air something for people and you've got a perhaps a different view on what's going on in our country at the moment. 

Simon Minty  53:08  
Well as Sarah and other listeners said it's imortant not to forget about people

Phil Friend  53:12  
As always if you want to contact us you can contact us by email which is mintyandfriend@gmail.com Or

Simon Minty  53:20  
we are all over social media, whether the socials so LinkedIn, Facebook, Twitter, and Instagram our Instagram account has been very well.

Phil Friend  53:30  
Alright, so you Simon and thank you everybody for listening.

Simon Minty  53:33  
Take care everybody. See you next time.

Announcer  53:36  
This is The Way We Roll presented by Simon Minty and Phil Friend. You can email us at mintyandfriend@gmail.com or just search for minty and friend on social media. We're on Facebook, Twitter and LinkedIn

Transcribed by https://otter.ai