“Our voices need to be heard” - disabled witnesses at the Covid inquiry

19th November 2024

bbc.co.uk/accessall

Access All – episode 134

Presented by Emma Tracey

EMMA-               Party season is nearly upon us, and I have started to buy clothes online, try them on, not like them and send them back. And that’s what everybody does, right? It’s what everybody does. But me as a blind woman I feel like if I try to buy clothes online even the best description of a jumpsuit or a dress or a top is just not enough. I can’t get enough information from it to know whether it’s going to fit me properly, what the texture is really like, how it goes with my skin tone. I can’t do those apps where you can take a picture of yourself and put the clothes on; that doesn’t work for me. You see this is the thing, I need a robot. I don’t have a robot to sit there and do all this for me. And then you get the clothes, you try them on, they’re all wrong, and then you have to send them back which means, like, printing labels and barcodes and taping them up, and then getting them to the Post Office. Like, my nearest Post Office now is probably five miles away. It’s absolutely a nightmare.

I’d love to go clothes shopping, I’d love to spend lots and lots of time in the shops but again, I really need somebody to come with me for that. and I just don’t have somebody wandering around behind me every minute of my life to be my shopping buddy. So, I do do it and I have a great family and I have great support, but I’m actually finding it very stressful. So, if I am wearing something that looks absolutely ridiculous on me on the way up to Christmas this year it’s been really hard work, I’ve put the work in and, I don’t know, I’ve got a bed full of clothes that I need to send back and no idea how I’m going to do it. Pff. On with the show!

MUSIC-               Theme music.

EMMA-               Hello. This is Access All, the BBC’s weekly disability and mental health podcast, and I’m Emma Tracey. And just like I had when I was reliving my late ‘90s youth at the Corrs concert in Glasgow at the weekend, you have the best seats in the house when it comes to disability and mental health news and chat.

                            This time, as the COVID inquiry continues we meet some disabled people whose lives have been forever changed by the pandemic. And People Fixing the World, our sister podcast, we’ve been tuning into that too, and we’ve got reporter Ben Morris with us to talk about some wheelchair wizardry. It’s all about artificial intelligence.

                            Get in touch with us. We’re on your socials @BBCAccessAll. And you can email accessall@bbc.co.uk. And if you haven’t already or if you’re listening on 5 Live go into BBC Sounds, hit that big subscribe button, and you’ll get us every week without having to do another thing.

                            Disabled people and those who support them have been front and centre in the COVID inquiry in the past few weeks. Nearly six out of 10 of the people who died of coronavirus in England between January and November 2020 were disabled. And people with learning disabilities were six times more likely to die of the virus than the general population. This inquiry aims to look into how the pandemic was handled and what can be learned from it. This third phase of hearings is dedicated to the impact on the healthcare systems in the UK. On the line to tell their stories about how their lives have been forever changed by the COVID pandemic are Rachael Andrews in Norfolk, who’s visually impaired, and Lisa Burke in Wales whose son, Seth, has Duchenne muscular dystrophy. Hi, Lisa. Hi, Rachel.

LISA-                   Hello.

RACHAEL-         Hiya.

EMMA-               It’s lovely to have you on Access All. But first, BBC health reporter Jim Reed joins me. Now, Jim’s been following the COVID inquiry from the beginning. He presents the COVID Inquiry podcast on BBC Sounds, and he’s here to tell us more about this phase 3 and how it relates to disability. Hi, Jim.

JIM-                     Hi, Emma.

EMMA-               It’s a bit of a tricky job you’ve got at the moment. I’m sure there’s lots of difficult things coming out of this phase. What is the purpose of the inquiry first of all?

JIM-                     The first thing to say is this inquiry is incredibly wide-ranging. So, whereas other countries have sort of run their inquiries into the pandemic in literally just a couple of months, this is a full-on full public inquiry. It started really getting going last year and will run probably into 2027, so it’s a huge undertaking. Because it’s so wide-ranging, and you hinted at this at the start, it’s split into ten different sections. So, we’re currently on section 3, and this one looks just at the impact on healthcare and the NHS. It’s been running since the start of September and it wraps up next week, so it’s ten weeks of hearings just on that subject.

EMMA-               And Jim, what have you been hearing from a disability point of view? What have disabled people been saying in this phase?

JIM-                     Previous parts of this inquiry have looked at things like the planning for a pandemic, the big political decisions made in COVID, lockdown and so on. And I have heard from organisations like Disability Rights UK, we’ve heard some expert evidence from academics looking at the impact on people with disabilities. I think what’s different this autumn is they’ve been running what they call impact testimonies. So, this is literally hearing direct evidence from individuals who were affected. And within that we’ve already heard some very powerful testimony from people with disabilities and their relatives.

EMMA-               And you heard particularly recently from someone who’s deaf.

JIM-                     That’s right. So, we’ve heard from, for example, a woman called Dr Sarah Powell. She’s a clinical psychologist. She was the first person to give evidence through a BSL interpreter. And she was talking about her experience as a deaf person in COVID and also her husband who’s deaf as well, and he was very seriously ill after catching the virus. This clip here is her talking through a sign language interpreter about the communication difficulties she had when her husband was taken very seriously ill one evening:

[CLIP]

SARAH-              My husband couldn’t breathe and he was having to really struggle with breathing. The communication was nowhere. I had to again wake up my son. So, I woke up my son… Sorry, it’s difficult because for the first time I had to use my son for communication. I’m adamant I don’t want to use my children for my communication needs but I could not communicate with paramedics or the doctor, we couldn’t write things down to explain what was happening. There was no time. It was an absolute emergency. It was life or death, my husband couldn’t breathe. So, I had to use my son for communication. And I don’t know what it was like for him; I can only imagine. To see his father in this state, the ambulance, the doctor.

MALE-                Take a breath, Dr Powell, take a breath.

[End of clip]

EMMA-               Gosh, that is hard to listen to, Jim. Now, what other disability related subjects have come up?

JIM-                     So, we heard evidence from a man called John Sullivan at one point. He gave very powerful testimony about his daughter, Susie, who had Down’s Syndrome. And she died very early on in the pandemic. She was admitted to hospital, she deteriorated in hospital, but she was not then escalated up to intensive care. And in her medical notes it actually said, ‘intensive care declined in view of Down’s Syndrome and cardiac comorbidities’ so other heart problems that she had. And that’s been a concern that’s been raised by Mencap and some autism charities as well.

EMMA-               Okay. So, she wasn’t sent into intensive care because she had Down’s Syndrome?

JIM-                     That’s what was in her medical records, and that’s what not just her family have been saying, the many other people with learning disabilities at the time and other disabilities say that some disabled people were effectively written off and not given the chance of lifesaving treatment that maybe other patients were given. Now, NHS England have consistently said, look there wasn’t a national policy on this. But I guess the question that the inquiry is going to have to answer is did policies like that exist in a less formal way at local hospitals? Because they were under so much pressure, Emma, that they were having to make decisions on the hoof, and some of those decisions may have been made very quickly and may have not been made correctly, I think is the allegation here.

EMMA-               Jim, will you stay with us? Because we’ve got a couple of people on the line who are going to tell us their stories about how their lives have been changed by the COVID pandemic. We’ve got Rachael. Hi, Rachael.

RACHAEL-         Hi, hello.

EMMA-               And Rachael, you’re visually impaired and you’ve got fibromyalgia, so you live with chronic pain. You’ve been listening to Jim talking there, does what he said chime with you?

RACHAEL-         Yes, it does. I have fibromyalgia, as you say; I am also severely sight impaired. And one of the symptoms of fibromyalgia is something called allodynia where you have nerve pain that doesn’t really correspond with any injury or anything like that. I had a very painful patch on my thigh and I described is as if I were being attacked with a red hot cheese grater; which sounds extreme but that’s true. I’m fairly used to pain because I have fibromyalgia so that’s not my first fear there, but that was rolling on the floor painful. And I’d been waiting for this treatment. They called up during the pandemic and said, ‘We’ve got a slot for you at the local hospital, but you can’t use public transport, you can’t use a taxi to get there because you need to isolate’. So, I said, ‘Well the only way I can get there is via the help of my PA’ because I have a sighted PA who will come and take me to places that I don’t already go with my guide dog. And they said, ‘Okay, well you need to self-isolate for three days and she also needs to self-isolate for three days’. And I said, ‘My PA doesn’t only work for me, she works for many other people with care needs as well because she comes from an agency. So, we cannot self-isolate, that isn’t going to happen’. So, in the end they said, ‘Well, as you cannot self-isolate and the person that you need to come with you, your carer can’t self-isolate, you can’t have the treatment’. So, that was the end of that.

EMMA-               Right. So, you didn’t get treatment that you needed, and you had the feeling of a red hot cheese grater on your thigh because of the needs you had in relation to your impairments?

RACHAEL-         Yeah, basically. Because I needed a carer or a PA to take me, which is not unique in that many disabled people do, that was it, no treatment for me.

EMMA-               Now, we’ve also got Lisa Burke from Wales. Hi, Lisa.

LISA-                   HI there.

EMMA-               And you’re Seth’s mum, and Seth has Duchenne muscular dystrophy which is a muscle wasting life-limiting condition. And Seth’s a teenager. And you guys were massively impacted by the pandemic, weren’t you?

LISA-                   Our first stumbling block was that Seth, who was still fully ambulant at the start of the pandemic, had a simple, small fall, which unfortunately resulted in a small fracture in one of his ankles. So, unfortunately due to the pandemic we weren’t able to access any of the rehabilitative services that he would normally be able to access, which would have obviously included things like hydrotherapy, physiotherapy to have allowed him to keep mobile and learn to weight bear again to actually keep him walking. We weren’t able to see any of the specialists that we would normally have been able to see. And the advice that we were given was to non-weight bear, which was unfortunately the wrong advice as it turns out.

EMMA-               Oh right. So, what did that lead to then?

LISA-                   Well, after six weeks of being advised not to weight bear he was in a cast. He has subsequently not been able to regain the ability to walk and is now a full-time powerchair user, and also cannot even weight bear anymore as his muscles had sort of wasted away.

EMMA-               Right. So, you blame that kind of speeding up of the wasting of the muscles and of him becoming a powerchair user on not getting the access to the services he needed. But you’ve also had to move house, is that right?

LISA-                   Yes. Because he unfortunately came off his feet so suddenly, it’s normally a much slower experience, you have a bit more notice, we had to sell our home during the pandemic – I don’t recommend trying to sell and buy a new home during a pandemic – and find somewhere that was fully wheelchair accessible as we couldn’t adapt the property that we were in. So, that went from us being mortgage free and leading a sort of relatively normal, standard life to suddenly having to uproot and having a huge mortgage and moving away from where we used to live.

EMMA-               What does Seth think of it all? What impact has it had on him?

LISA-                   He’s a fairly typical teenager, so he’s a man of few words, to try and drag him away from his gaming to get him to talk about it. But I know he does feel sort of forgotten, I think is the word I would use, and it’s certainly the word that he’s used for us previously. He felt sort of low priority, if that makes sense.

EMMA-               Well, you did actually manage to drag him away from his gaming and get some words out of Seth. Let’s hear him:

[Clip]

LISA-                   So, Seth, how did you feel about your care during lockdown?

SETH-                 During lockdown I thought I was quite overlooked. Didn’t get the care I really needed and it was quite upsetting really.

[End of clip]

EMMA-               Oh bless him. You can actually hear the emotion in Seth’s voice there. Have you been following the inquiry, Lisa? And do you think that carers are listened to more now than they were during the pandemic?

LISA-                   Yeah, I have been following the inquiry with interest, as I said, particularly as it directly impacted us and lots of other people I know in the communities that I circulate in. I think a big part of what I would like to see is, because we know probably the likelihood of there being another pandemic at some point is fairly high, I would like to see what the recommendations are to actually forward plan.

EMMA-               Okay, so have a plan basically.

LISA-                   Yeah.

EMMA-               And Rachael, have you been following the inquiry? And if so, what are your hopes for what can come out of it?

RACHAEL-         Yeah I think, as Lisa said, a plan, because vulnerable people, disabled people, we do exist in the world. And I think our voices need to be heard, our advice, our lived experience, the things that we can offer, we’ve a wealth and breadth of information as to how we need care and how systems need to work for us, and there needs to be more communication with people with disabilities and more planning for us. That’s just the end of it. That’s as simple as you can say.

EMMA-               Jim, you’ve been listening to Rachel and Lisa, are their stories familiar to you? Does that chime with what you’ve been hearing?

JIM-                     Yeah, there are a couple of really important themes there that I think we have explored a lot in this inquiry. So, one is the impact of those visiting restrictions on people with disabilities. We’ve heard more examples in the inquiry of people for example with learning disabilities who couldn’t have someone with them to explain what was going on. People who were deaf, were blind that couldn’t have carers and support workers there to explain what was happening to them when they might have had to have been put, for example, on to a ventilator with COVID. And I don’t think – and I think this came out in the conversations you just had with them, Emma – I don’t think those kinds of things were properly explained or properly planned for before the pandemic. And I think that’s one thing they’re going to be looking at in a lot of detail when they draw up the recommendations and findings in this part of the inquiry.

EMMA-               And the hearings end next week in this phase. What happens then?

JIM-                     Yeah, this is where it gets even more complicated I’m afraid. So, the ten sections of this inquiry are being run concurrently. So, what happens is Baroness Hallett, who’s the chair of this inquiry, and the rest of the team listen to all this evidence, they have done in this section for ten weeks; then they go away and they draw up a report with a set of recommendations for the government. Now, the government can either accept or reject those recommendations. It does take an awful lot of time though, so I would not expect to hear those findings probably until the spring of 2026.

EMMA-               And Jim, you present the COVID inquiry podcast on BBC Sounds, as I said at the start. When is that on?

JIM-                     The COVID Inquiry podcast comes out every Saturday morning on BBC Sounds. You can hear a wrap-up of all the evidence at the inquiry from the previous week.

EMMA-               Thank you Jim Reed, and thank you to Rachel and Lisa as well. I’m sure you’ve got stuff to say about this, listeners. If you have a story to tell, if you’ve something else you want us to talk about around COVID and the COVID inquiry please do get in touch, accessall@bbc.co.uk.

MUSIC-               [Electronic voice] People Fixing the World.

EMMA-               Ben Morris is with me. He’s a reporter on one of our sister podcasts, People Fixing the World, which is all about solutions. And hopefully Ben has all the answers for us today, all the solutions to all our problems. Do you, Ben?

BEN-                   Not all the solutions. I have one solution for you.

EMMA-               Okay. So, we’re going to be talking about artificial intelligence and how that might be able to help people to drive their wheelchairs more successfully. And Ben, you use a wheelchair and you’re a bit of a wheelchair nerd, is that right?

BEN-                   Yeah.

EMMA-               How geeky are you?

BEN-                   I’m on the level where I email developers of joysticks and say, ‘I think we can develop it this way and make it easier for people to use’. And they’re like, ‘Cool. Do you want to test stuff out for us?’ and I’m like, ‘Yeah, sure, why not? As long as I don’t crash’.

EMMA-               Right. So, you use a powered wheelchair then obviously if you’re using a joystick?

BEN-                   Absolutely, yeah. I have spinal muscular atrophy, so I’m basically paralysed from the neck down and very limited movement, and roll around in an electric wheelchair running over everyone’s feet.

EMMA-               So, you’ve been recently looking into a pretty nerdy thing about how artificial intelligence can help some wheelchair users get around more easily. Tell me more.

BEN-                   As many of your listeners will know not everyone can use a power wheelchair, whether that’s because of their physical limitations or whatever. But it’s a particular problem for people with severe cerebral palsy, and that’s just because of the uncontrollable movements that they experience on a day-to-day basis; they just can’t hold a joystick and the movements of the chair become sort of disjointed and very jerky and there’s just no control. Someone who this is a major issue for is 22 year-old Levi who lives in Flanders in West Belgium. The thing that we’re focusing on isn’t the wheelchair itself, but it’s more a series of wonderful devices that whack on the back of this thing and it’s all connected by sensored pads that go round his head and his feet. Now, this device picks up all of his unintentional movements and filters them out. So, as soon as he sits in the chair it sort of builds up a profile of him and how he functions basically.

EMMA-               That’s really cool.

BEN-                   I know.

EMMA-               So, it’s learning all the time, so it’s just going to get better and better and better?

BEN-                   All the time. But it’s really unique because when you turn it off and on it resets, so it’s going to forget what you did yesterday. It’ll have a basic sort of knowledge of what the unintentional and intentional movements are, but if he’s having a particularly bad day where he’s stressed then it will pick up on that and, in theory, filter it all out.

EMMA-               It sounds like a sort of magic, Ben?

BEN-                   Oh yeah, it really was. And it was just amazing to see him use the chair:

[Clip]

LEVI-                  I am steering with my head, and actually levitating using my foot.

BEN-                   Mate, honestly, you look so happy. You’ve got the biggest smile on your face. Much happier than you were in your manual chair, I can just sense it.

[End of clip]

BEN-                   The movements did become very, very fluid. It was almost like he was using a joystick. His posture was very relaxed, he didn’t seem stressed at all. But what I find absolutely amazing is that it can plug into the craziest of things, especially computer games and a games console.

EMMA-               So I’m clear: he’s in his wheelchair?

BEN-                   Yeah, and he’s got pads around the sides and back of his head. And then he’s got two pads that are under his feet that you need very minimal movement to use. They’re part of the AI device.

EMMA-               Okay. And then there’s like a box at the back of his chair which connects to those pads which learns the stuff, right?

BEN-                   Yes.

EMMA-               And that connects to the motor of the wheelchair which moves it around?

BEN-                   Precisely, yeah.

EMMA-               But you can plug that box out of the motor of the wheelchair and plug it into the computer console?

BEN-                   Yeah, as long as the chair has infrared he can control the TV, he can control his computer, you name it. As long as there’s a wireless connection at the end of the day he can control it. Now, he and I play the very popular football game which, well, you’ll see what happens:

[Clip]

BEN-                   Oh, no, no, no! Ah! [Laughter] That’s an incredible hit.

LEVI-                  Woo!

BEN-                   What did you think of my footballing skills?

LEVI-                  It was too short to tell.

BEN-                   Very diplomatic. Fair enough.

[End of clip]

EMMA-               [Laughs] I know the sounds of that computer game from my house. I mean, you know as well as I do, Ben Morris, that lots of people develop things for disabled people and the developers are non-disabled, and they look really amazing and whacky and great to non-disabled people and to some disabled people, but they’re far too expensive, they’re too complicated. Tell me, is this one of those? How much is it? How many people actually will it be able to help?

BEN-                   Yeah. So, it’s 10,000 euros, which is quite a lot. But there are roughly 3.5 million people around the world with severe CP who it could potentially help. At the moment they’ve only sold about 100, but they’re looking to conquer the world with this device.

EMMA-               Tell me, if you could have AI on your chair, because your impairment is a bit different to Levi’s, what would you have and what would it do?

BEN-                   I would get it to just do all of my admin.

EMMA-               [Laughs]

BEN-                   Honestly, the amount of admin in a disabled life is stupid. Just tell me where to go, what to do and I’ll do it.

EMMA-               I think you need a robot, Ben, not a little thing for the back of your chair, to be fair.

BEN-                   Yeah, I do.

EMMA-               And that’s not going to cost 10,000 euros.

BEN-                   No.

EMMA-               It’s probably going to cost a lot more than that.

BEN-                   More like a million.

EMMA-               For more stories about ingenuity and innovation like this one find People Fixing the World on BBC Sounds. Thanks, Ben.

BEN-                   Thanks for having me, Emma.

EMMA-               That is it. Thanks to Ben Morris. I could do with an admin robot myself, maybe a robot dog with some admin skills, that would be awesome. And thanks to the rest of my guests, and thanks to you for listening. We love to hear from you. Please do get in touch. You can email accessall@bbc.co.uk, we’re on X and Instagram @BBCAccessAll, or you can send us a WhatsApp text or voice message, starting with the word Access, to 0330 123 9480. Thanks for listening. Bye.

[Trailer for People Fixing the World]

MUSIC-               [Electronic voice] People Fixing the World.

MYRA-                People Fixing the World, brilliant solutions to the world’s problems.

FEMALE-            All right, let’s do this!

MYRA-                We meet people with ideas to make the world a better place.

MALE-                Trying new things that they’re really passionate about.

MYRA-                And investigate whether they work.

MALE-                The idea is you send in a robot where it’s unsafe to send another human being.

FEMALE-            Wow, okay.

MYRA-                People Fixing the World, from the BBC World Service.

MALE-                Buckle up and get ready to ride.

MYRA-                Listen now wherever you get your BBC podcasts.