'I'm visually impaired, but cancer information wasn't accessible'

28th October 2022

bbc.co.uk/accessall

Access All – episode 24

 

Presented by Nikki Fox and Emma Tracey

 

EMMA-         So, someone sent me an article yesterday where Love Island’s Tasha Ghouri, who’s deaf, her boyfriend, Tyler LePage. Is that his name?

NIKKI-           What a name. I love it.

EMMA-         I know, what a showbiz name. He’s got a tattoo with a hand saying ‘I love you’ in BSL, and a cochlear implant. I just don’t know what to make of it. I just think it’s very forever.

NIKKI-           Yeah. Which is always the worry with tattoos, when you personalise them to that degree that you’re still going to be with that person.

EMMA-         Yeah. So, I was just wondering if you would get a tattoo?

NIKKI-           Oh no. No. I’d get a wheelchair on my ass!

EMMA-         [Laughs] Would you not?

NIKKI-           No. No. Do you know what, I would probably get something like a little love heart somewhere on my finger. I’m very boring.

EMMA-         Well, I just don’t like pain.

NIKKI-           If you get something on your ass, apparently that’s like not as painful.

EMMA-         Oh really? So you need to pick the right spot.

NIKKI-           Do you want to get a tattoo of me?

EMMA-         I mean I could do. I’ve been thinking about this and-

NIKKI-           About me?

EMMA-         Well yeah. A big tattoo of you on my back. The only tattoos I would get maybe are like make-up tattoos.

NIKKI-           I’ve had the brows tattooed.

EMMA-         All right. So do you not still have them tattooed then?

NIKKI-           Yeah, yeah, yeah. They wear off over time. They’ve worn off quite a lot now, but they were there. I was going to say that to you actually.

EMMA-         Nobody told me they wear off.

NIKKI-           Depends what you do to your face.

EMMA-         I learned the other day that you could tattoo foundation onto your face.

NIKKI-           Oh wow!

EMMA-         That’s a lot of tattoo. So I was thinking either make-up, because that’ll be handy, or if I wanted something like Mr LePage did for Tasha, for Robin, it would probably be like some sort of fluorescent tattoo so he could see me in a crowd because he’s visually impaired.

NIKKI-           A fluorescent tattoo?

EMMA-         Well I don’t know because I can’t see, so I don’t know about colours.

NIKKI-           I don’t know. I mean you know you can get colours on tattoos, obviously, but a fluoro one, Em, I think might be pushing it.

EMMA-         Do you think?

NIKKI-           Although anyone who’s a tattoo expert please tell me that I’m talking rubbish.

EMMA-         A friend of mine once was very excited because she got a tattoo, and she said, “Quick, quick, come and see my tattoo because it’s still a bit scabby”, so I could feel the shape of the tattoo. And that’s the only tattoo I’ve ever felt actually. And fair play to her, she realised that it still had a bit of texture so she let me feel her tattoo.

NIKKI-           Well, if I ever get my eyebrows tattooed again, you can feel my scabby brows.

EMMA-         That would be great!

NIKKI-           Yeah? If you like feeling scabby things, I’ll like you touch me up, love!

MUSIC-         Theme music

NIKKI-           It’s Access All, our weekly disability and mental health podcast, made by the same BBC team as Americast and Ukrainecast and Newscast, all the biggies. I’m Nikki Fox, and I’m in London.

EMMA-         And I’m Emma Tracey, and I’m also in London.

NIKKI-           Yes. I love it when you’re in London.

EMMA-         I love it too.

NIKKI-           I’ll tell you what, Emma, I got quite excited about the podcast this week.

EMMA-         Did you?

NIKKI-           Yeah. Do you know why?

EMMA-         Well, I get excited about every week, Nikki.

NIKKI-           So do I. But I get quite nervous. You know obviously we record these bits and it’s just like me and you having a chat, we have a laugh, and I really thoroughly enjoy it. But there is that pressure that we both feel to have done something exciting in our lives.  But I actually did something.

EMMA-         Did you?

NIKKI-           I went out at the weekend. It was a placed called Sheffield Park. It wasn’t in Sheffield, which is my mum’s hometown, big up Sheffield. My boyfriend had booked it. Before I met Dave, honestly I’d watched Countryfile and I was dead inside, like I just thought the countryside was so inaccessible I just didn’t even bother with it. But I have become a real country bird now. I put it on Insta the other day. I was loving all the autumnal colours. I took so many photos. Honestly the trees, Emma, oranges and the reds. And it was actually quite accessible as well. But the best thing I saw, this sort of like big shed with loads of scooters inside.

EMMA-         Ooh.

NIKKI-           But they weren’t just any mobility scooter, they were tandem scooters.

EMMA-         I know you and your sister are both disabled. Is it for two disabled people to go on?

NIKKI-           Well I’m guessing. I suppose you could have a non-disabled on the back if you wish. But I sort of envisioned it as the less glamourous, less exciting version of a motorbike and a sidecar.

EMMA-         Okay. So it could be a non-disabled person and a disabled person on it.

NIKKI-           I could chuck you in the back, we could go round together.

EMMA-         I’d love that.

NIKKI-           That would be quite good fun actually.

EMMA-         I would love that. But you would have to audio describe it because you know I wouldn’t be able to feel or see the trees if I was on the back of a scooter.

NIKKI-           There could be a gig in that, I could go round in a tandem scooter and be a real life audio describer. Anyone can drive it, Emma. You’ve got to imagine, right, it’s very long, it’s like the pimp machine of the scooter world. It’s not just any scooter.

EMMA-         Stretch.

NIKKI-           It’s the limo scooter. But it was very long, it was like a stretched limo, but it was exactly sort of two scooters, only the front had the handlebars. So you could sit in the back, or a PA, or anyone could sit in the back on a nice plush seat, kick back, relax, wouldn’t have to do anything. I’d do all the steering, they could just, you know, have a nice time. The only issue was there were obviously very narrow pathways, and that bad boy had a turning circle, I mean there was no hope, you’d need a car park to turn that around.

EMMA-         Was it like one of those trucks that actually talks when it’s reversing?

NIKKI-           Yeah, it needed that, “This vehicle is reversing”, like an HGV. It needed it. Because I saw an older fella using it and oh, he went straight into a hedge.

EMMA-         Oh, gosh.

NIKKI-           It was very difficult to manoeuvre. I would have been all right because I’m a professional mobility scooter rider.

EMMA-         Yeah.

NIKKI-           But you need a bit more arm strength, and you need a bit more control with it.

EMMA-         But isn’t it great that they have that sort of thing.

NIKKI-           Isn’t it. What else has happened this week, Emma?

MUSIC-         Strictly theme tune in background

EMMA-         Well, I watched my second episode of Strictly ever, because I’m keen to see Ellie. Obviously I can’t see her dancing, but I’m keen to know how she’s doing, and she still is very, very much there.

NIKKI-           She’s amazing.

EMMA-         She’s doing great.

NIKKI-           My family love her.

EMMA-         This week coming up is the Halloween special.

NIKKI-           Yes.

EMMA-         And it’s already out there that Ellie and Nikita are doing the foxtrot to Scooby Doo.

NIKKI-           Oh wow! I like the authentic music.

EMMA-         You know what, Beth said that as well, the Producer, Beth said she likes it when it’s just straight. But it did make me think of Halloween and fancy dress because I dislike fancy dress.

NIKKI-           Oh, me too.

EMMA-         Because I don’t know what I look like, never mind what anybody else looks like.

NIKKI-           Yeah.

EMMA-         And like a mask to me just feels like a bit of plastic, it doesn’t feel like what it’s supposed to look like. I avoid it at all costs, and I have one sort of 1920’s skirt and top that I wear every single time and I’m like, ‘Yeah, I’m in fancy dress, I’ve met the brief’.

NIKKI-           Yeah.

EMMA-         See, you strike me as someone who loves her fancy dress.

NIKKI-           Oh no. No. It’s taken a very long while for me to develop anything that resembles a style, Emma, you know what looks right and what doesn’t.

EMMA-         Yeah.

NIKKI-           So I have a little style that I stick to, and I’m very comfortable. Mainly it’s a maxi dress, a blazer over the shoulders, bright pink lipstick, bleach blonde hair, Madge from Benidorm. I can’t be faffing around with getting other clothes that I have to think about.

EMMA-         Yeah.

NIKKI-           I don’t have enough time. Don’t have enough money. You’re not going to wear it again, are you? I don’t like waste, Emma.

EMMA-         There is a guy called Josh Sundquist and he’s got one leg, and he’s known for his fancy dress costumes. We said we don’t like fancy dress, but not all disabled people, that’s all I’m saying. So he’s done a flamingo once. He’s done a half-eaten gingerbread man. He really like uses his one leggedness to embellish.

NIKKI-           He works it.

EMMA-         He really works it.

NIKKI-           The only time I ever had to dress up was for my friend’s hen do, and I can’t remember where we were, Magaluf or somewhere like that, and I was a part-time wheelchair user at the time. I t they were going as the emergency services or whatever, and so I just said to my very good friend Lee, “You go as a nurse, I’ll go as the patient in a wheelchair”.

EMMA-         [Laughs]

NIKKI-           And then we just literally got an old rag, and I put some red lipstick on it and I tied it round my head like a bandana.

EMMA-         That’s perfect!

NIKKI-           That’s the most effort I’ve ever gone to.

EMMA-         As a kid I was always the one in the binbag. Always.

NIKKI-           Awwh.

EMMA-         I just didn’t know what else to do.

NIKKI-           In a binbag?

EMMA-         You know you wear the black bag. I don’t know why you wear a black bag.

NIKKI-           Why do you wear a black bag, Em?

EMMA-         I don’t know. It’s something to do with-

NIKKI-           Who told you to do that?

EMMA-         [Laughs]

NIKKI-           Who told you to wear a black bag?

EMMA-         Other people were doing it as well.

NIKKI-           Somebody was taking the-   

EMMA-         [Laughs]

NIKKI-           Somebody was taking the mickey.

EMMA-         Do you think I was the only one in the black bag?

NIKKI-           I think you might have been the only one in the black bag. And I’ll tell you something, Emma, if we’d have been friends that would not have passed on my watch.

MUSIC-         Music

NIKKI-           Hospital appointments can be pretty rubbish at the best of times, but a lack of access to relevant information can make the experience so much worse. Anna Tylor, the Chair of the RNIB, that’s the Royal National Institute of Blind People, got in touch with us at Access All about her own personal experience. Anna has a visual impairment and she is going through treatment at the moment for breast cancer. To say she’s been horrified by a lack of information is an understatement. Anna, thank you so much for joining us today. How are you feeling?

ANNA-          Actually I’m feeling pretty good today. Thank you for asking, Nikki.

NIKKI-           Well you sound very chipper. But Anna, we’re going to talk about one of the main issues which is access to information. Have you come across any issues that have been difficult for you?

ANNA-          I think the challenges that I’ve experienced have been around accessing information about breast cancer. Accessing information about the surgical procedures and the processes that I’m going to find myself a part of. About how I will take medication. How I will know what to take and when to take it. This has been really problematic. This is not the fault of any one individual, but it’s a systemic failure.

My observation is that certainly in my NHS Trust the system simply wasn’t set-up for somebody like me, and there seemed to be a widespread lack of understanding of what should be in place. It really fell on the shoulders of a couple of extremely thoughtful and kind individual nurses who went the distance. This meant that they spent time, presumably out of their busy clinical schedules, creating PDFs or copies from hardcopy and turning it into something that they would email me. Sometimes, because of the way the system was set up, information couldn’t be rotated so that you could only read it if it was upside-down.

NIKKI-           Right.

ANNA-          Things like consent forms where a surgeon may have written on a consent form, because they’re not designed to be enlarged, would become very blurry and inaccessible. So none of the material that I received via email really was designed to be as read as large print, so it was all a bit of a hotchpotch.

When I first started chemo, I was told that pharmacy had advised them that it wasn’t possible to provide large print instructions for my drugs. I’d asked for colour coding between the drug boxes, and a large print sheet of instructions. I thought that was the minimum safety standard that really I required in order to manage my drugs at home. I’ve been absolutely adamant I will not undergo any drug therapy or take any drugs unless I have a full set of accessible information about the drugs that I’m being asked to take, and I’ve absolutely put my foot down on that. And indeed this was provided. But on a subsequent visit to chemo, I was asked if I still had the instructions from previous drugs because if so I wouldn’t need new ones. You will always need to re-issue the instructions.

NIKKI-           Because I would imagine as well, Anna, when you’ve been given this diagnosis you must have had to think about what options, what routes you want to take when it comes to treatment after the diagnosis, and there’s a lot of decisions to be made. And to make a decision we all need information, it’s key, it’s power, isn’t it?

ANNA-          It probably didn’t alter my choices, but it certainly impeded the flow of discussion. All surgeons, all physicians, all clinicians, need to be satisfied that patients have understood the basis for the decision that they have made, that there’s absolute clarity that the risks are understood. Certainly in my case I don’t see how it would be possible for a surgeon to satisfy themselves that I have clearly understood all the risks around, say, anaesthesia, if I haven’t had access to that information.

NIKKI-           Emma, I know you’ve been looking into this for us. Anna’s experience is not an isolated one, is it, it’s far more wide-ranging.

EMMA-         It really is wide-ranging. And it’s not just blind people either, it’s anyone with any communication needs, so if you’re deaf, dyslexic, etc. You know what, we shouldn’t even be having this conversation, Nikki, because they were rules implemented in 2016 and they’re called the Accessible Information Standard, and they’re actually legally binding in all NHS settings. They’re there to make sure that people get the information they need in a format that suits them. So that might be a braille letter if you’re blind and a braille reader or audio maybe, or an email. It might be a text instead of a phone call if you’re deaf.

NIKKI-           And does this happen? Does this go to plan, Emma?

EMMA-         No it doesn’t. I mean the first thing I would say is that that information and your needs are supposed to be tagged on your file, so everybody is supposed to know about it, and they clearly don’t always know about it from Anna’s story. There was some work done with a coalition of charities, so the RNIB that you’re the Chair of, the RNID which looks after deaf people.

ANNA-          That’s right.

EMMA-         Healthwatch England, and Sense which looks after people with complex disabilities. They surveyed 900 people, which is like a mix of people who use services and also NHS workers, and they found out that after five years of the Accessible Information Standard being implemented, only 11% had equitable access to the NHS. 77% reported rarely or never receiving information in a format that suited them. And one in three social care providers were unaware of the rules at all.

NIKKI-           We’ve been sent a few messages via the RNID, that’s the Royal National Institute for Deaf People, about the challenges they faced at healthcare appointments. So Mel from Sandhurst said:

MEL-             I rarely visit my GP surgery, but when I have to I dread waiting to be called. Recently when I arrived for an appointment the receptionist said, “Wait next to the desk and we’ll ask someone to come for you”. It was awful. Everyone was staring at me as if to say, ‘Why’s she hanging around here?’. I felt like a child.

NIKKI-           Nicola from East Grinstead said:

NICOLA-       The BSL interpreter didn’t show up for my GP appointment. So when I was in the consultation room, the doctor made me write everything down, even though I find this difficult.

EMMA-         I also spoke to Abigail Gorman, and she’s from SignHealth, and they have done a lot of work around this standard and deaf people, and they do a lot of work around health information for deaf people. They did a lot in COVID as well. Abigail says actually that the standard is perfect as it’s written. There’s nobody checking that it’s being implemented. And in 59% of cases that they have found the complaints system is inaccessible, and she says that without complaints no-one will know how to improve the system.

NIKKI-           Because they don’t think there’s a problem.

EMMA-         Yeah.

NIKKI-           We also spoke to Macmillan as well, one of the big cancer charities, which said as well as offering cancer information in a variety of formats, earlier this month it also launched its Deaf Cancer Support Project alongside Self Help UK, to offer one-on-one emotional and practical support in British Sign Language, which is great. What do you think needs to be done to improve the situation, Anna?

ANNA-          I think that it would be really helpful if the Accessibility Information guidelines were built into all the contracts that happen in terms of setting up health services, and that health providers are measured against these standards. Because it goes to the heart of patient safety. I cannot emphasise this enough. The cost of ensuring that that happens has to be met. Leaders within the health sector have to take responsibility and have their own performance measured against the implementation of these Accessible Information Standards. They have to satisfy themselves that through their management team the relevant training, the relevant rollout of awareness, is put in place. I would strongly urge co-collaboration. So do not do unto us, nothing about us without us, to coin a phrase, Nikki. I just feel very strongly that if you co-create you will get a better outcome.

NIKKI-           Yeah.

ANNA-          And I don’t want anyone to go through the stress that I feel this has put me under. It’s made me livid.

NIKKI-           We also contacted your NHS Trust, Hampshire Hospitals NHS Foundation. Its Chief Executive, Alex Whitfield said, ‘it’s clear from Miss Tylor’s experience that we have fallen short of the standards our patients need and rightly deserve. I apologise unreservedly. We take this matter very seriously and are currently rigorously investigating the issues raised’. She adds that all patient information is available in both standard and large print online.

ANNA-          I really appreciate the fact that Alex has apologised. I’m very sorry that she hasn’t yet spoken to me, but this is not the end of the matter.

EMMA-         Anna, stay with us because we are going to talk about the other aspects of being a visually impaired woman with breast cancer.

MUSIC-         Access All

NIKKI-           It’s actually Breast Cancer Awareness Month, and Blindness Awareness Month.

EMMA-         It is a reason to talk about this a bit more, isn’t it, and to bring it into the next section of the pod.

NIKKI-           Yeah, absolutely. Anna, obviously the communication around your cancer treatment is a huge issue, as we’ve just discussed. But has your experience and treatment for cancer been different do you think to people without an impairment?

ANNA-          I would say so actually, because I think just going into the hospital where COVID restrictions still persist and just navigating, having that spatial awareness. I always take my cane. I’m not a full-time cane user, but definitely hospitals and airports are absolutely essential. I went to have a heart check before I started chemo. I went on a Saturday morning to find that the main door was locked and all the lights were off. Well, I had absolutely no idea that there was a sign on the door sort of at hip height in small print that said ‘if the door is shut, use the side entrance’. But I didn’t know where the side entrance was.

EMMA-         When you’re in hospital it’s spatial awareness.

ANNA-          Yeah.

EMMA-         When you said spatial awareness, I remember being in hospital with a kid last year and they moved us from one place to another in the middle of the night, and the anxiety around that for me was awful because I really need a map of where we were in my mind.

ANNA-          Yeah. I have a ritual certainly around going to chemo. I like to go on my own because there’s a particular walk I do, and there’s a bit of a tunnel of trees that I go through, and when I go in I’m leaving my normal life, and when I come out at the other end psychologically that’s me in chemo mode and I know that I’m about to start something which is going to wipe me out for a few days.

NIKKI-           I was going to say that. How are you handling the side effects of chemo? Is it any different to having sight loss?

ANNA-          It certainly has affected my sight and my balance.

NIKKI-           Right.

ANNA-          My arms and legs feel very muffled, I think is a good way to say it.

NIKKI-           Awwh.

ANNA-          I need my feet and I need my hands as part of keeping myself safe and moving around, so it’s been a bit irritating from that point-of-view. But it’s a temporary state of affairs, it’s not going to be forever.

NIKKI-           What does a muffled feeling feel like, Anna?

ANNA-          Well, it just feels as if... imagine you’re wearing a pair of gloves or something like that, or you just can’t quite feel things as sharply as you might do normally.

NIKKI-           Yeah.

EMMA-         That’s really scary for me. I hate wearing gloves so much because I just can’t get on with them at all.

ANNA-          Absolutely. Yeah.

EMMA-         I need that depth of feeling to get a lot of things done.

NIKKI-           Oh wow!

EMMA-         Well yeah, because you’re using your hands. Your hands aren’t your eyes, that’s rubbish. But your hands are taking in a lot of the information that someone else’s eyes are taking in. So you need to know by touch that – I don’t know – that there’s dirt on the countertop.

Some people do lose their hair, don’t they, when they’re going through chemo. Has that happened to you, and how have you managed that?

ANNA-          I have lost my hair. I’ve got a very ancient stuffed dog that was a toy that belonged to my mother when she was growing up that sits on the table next to my bed, and he’s rather bald in patches and he’s got to the odd tuft of hair left, and I look a bit like Jock the dog.

NIKKI-           Jock.

ANNA-          You know, a sort of slightly alopecia stuffed toy. I’ve got a bit of fluff on the top of my head, but I am largely bald. There is a liberation about it because you never have to shampoo, you never have to blow dry, you never have to do anything. But I do rather miss my hair and I’m looking forward to it coming back. But in the meantime I thought the best thing to do is to have some fun with fabric, and there isn’t anything you can’t learn either by asking a friend or watching a YouTube video or just sort of working it out. I’ve been really fortunate that I’m wearing a head covering at the moment which is an enormously long piece of silk that a friend of mine bought back from Delhi a few weeks ago.

EMMA-         Awwh.

ANNA-          So I’ve just sort of had fun with all kinds of head coverings. I thought I may as well just go large on that.

NIKKI-           Yeah, I love that.

ANNA-          I’ve got some great 1980’s/1990’s earrings that I was on the cusp of throwing out.

NIKKI-           Oh yes!

ANNA-          You know, great big wooden ones and things like that.

EMMA-         Nikki loves her big, big earrings.

NIKKI-           I love it. I love the fact I can visualise it.

ANNA-          So I’m sort of getting all these out and having some fun, because why wouldn’t I? I was invited to attend the late Queen’s funeral and I was bald, it was at the height of my hair falling out, and it was extremely uncomfortable, I couldn’t wear a hat because it just hurt so much. So a great girlfriend of mine went and bought me three and a half metres of navy blue cotton lining fabric, very, very lightweight, and I wore an enormous navy blue turban. It stayed on for the entire morning. I was a bit worried it was going to fall off. Anyway, I managed to get through the whole thing, and it was my first really serious go at doing it and actually it didn’t turn out too badly.

NIKKI-           I’ve absolutely, well we’ve both loved speaking to you, Anna. This is such an important issue. We’d love to open this up to our listeners as well and ask you all, have you been through similar experiences to Anna when it comes to communication? Or other kinds of support, whatever your disability impairment, whatever, what is it like when you have to go to hospital or have some form of medical treatment? We would love to hear from you. You can email us accessall@bbc.co.uk, or you can tweet us @bbcaccessall, or you can send us a text message or voice note, whatever you want on WhatsApp, the number is 0330 1239480. Just pop the word ‘access’ if you can at the front of your message so that we know that it’s meant for us. Thank you so much.

EMMA-         Thank you. And good luck with the rest of your treatment.

NIKKI-           Yeah, I hope it’s all right, darling.

ANNA-          Thank you, guys.

MUSIC-         Access All

NIKKI-           Our guest this week is somebody that Emma and I are very excited to chat to.

FEMALE-      You have had relationships, haven’t you, you’ve had girlfriends in the past?

MALE-           Yeah, I have. I’ve had some great relationships, and I think they’ve ended for one reason or another. My last one ended because she wanted to be with an able bodied person. So it’s not easy, like I just need to find that person who connects with myself.

NIKKI-           It’s Asta Philpot.

ASTA-           Thank you.

NIKKI-           Asta, thank you so much for coming on the show.

ASTA-           Hi.

EMMA-         I love how you got your name, Asta. Your brothers are Simon and Robin, right?

ASTA-           Yeah they are, yeah.

EMMA-         And then you’re Asta.

ASTA-           I know, it’s random.

EMMA-         Yeah. Because your mum saw a sign when she was going to see you in the hospital and you were really poorly after coming off a difficult C-section and she was coming to see you for the first time, and she saw a sign saying ‘Asta, Miami is glad you’re here’.

ASTA-           Yeah.

EMMA-         How cute is that!

ASTA-           Yeah.

NIKKI-           I’m so looking forward to speaking to you, because I first spotted you on Steph McGovern’s show, Steph’s Packed Lunch. How are you enjoying that?

ASTA-           It’s fun. It’s a lot of fun. Steph makes it a lot of fun.

EMMA-         Asta, what kind of things have you talked about?

ASTA-           It’s quite serious. Anything from politics to people doing random things in society. But it’s good, it allows us to be involved in debate. For me it keeps me current, and I just like the studio kind of vibe and I love being in front of camera, I love it.

NIKKI-           Give me a run down of your working life up to this point, like what kind of stuff have you done? Because you’re aiming to be more on TV, aren’t you?

ASTA-           Yeah. I started off at ITV, I was a video editor there for nine years.

NIKKI-           That’s it.

ASTA-           At college I did performing arts. I always knew then that I had this zest for being on stage and performing. Then I worked at ITV, and then I did the famous BBC ‘For one night only’ documentary. That took me and two other guys with disabilities on a road trip to Spain to lose our virginity in a Spanish brothel. It’s kind of progressed from there and it’s gone on and on and on really. I’ve always felt this kind of barrier between me and whoever makes the decisions or the media, in that I want to do more in front of camera.

NIKKI-           Yeah. When it comes to diversity, when it comes to disability on screen, we know that there’s still a long way to go, the stats kind of back that up. What is the barrier? Why are we not seeing more people? Why are more people not coming through?

ASTA-           It’s a hard one to figure, isn’t it? I’ll always remember, I met with an executive of a big soap on television and I said to him, I had a really frank conversation with him, I was like, “What’s the problem?”. I didn’t really get an answer, but the feeling I got is it’s almost a fear. People say to me, “Do you think disability’s changed in society and media and stuff like that?”, and I’m like well yes, in one hand yeah we’ve got the Paralympics and stuff like that. But has it really? Are people going to take the leap and actually say, “Hey, we can recognise your talent, we’re going to give you a chance”. Because that’s what it takes. That’s what it needs.

NIKKI-           Yeah, you’re right.

ASTA-           Especially in my circumstance.

EMMA-         Well you have had an awful lot on your plate, right, over the last few years. And I’m not saying that that’s any reason why you’ve been not getting different jobs or anything, but you have. You were talking about a lot of serious things on Steph’s Packed Lunch. We’ve talked a lot about serious things here as well. We’ve talked about cost of living a lot, and the other big one for us has been care.

NIKKI-           And support, yeah.

EMMA-         Yeah, and support.

ASTA-           Me too.

EMMA-         Yeah. So we’ve talked about PA support and lots of different aspects. Can you tell us a bit about your journey. You were living independently in a flat and that was going okay at the beginning?

ASTA-           Yeah. So basically I got my own flat and it was amazing, a whole new independent world. At the time I had a PA with me during the day. But it kind of fell down, because I had a meeting with social services. At that time they were sending me someone just at night to help me into bed.

NIKKI-           Oh wow!

ASTA-           I said to them, “Look, I need someone”, because they said, “We can offer you four visits a day”, and I said to them, “What happens in-between the four visits if I need to go to the loo?”.

NIKKI-           PAs, personal assistants are like carers, aren’t they.

ASTA-           Yeah.

NIKKI-           But also, Asta, can you just tell us the kind of support you need as well so that listeners can understand.

ASTA-           I need all the support. I need full support. Basically I can’t use my arms or legs. I can’t feed myself. I can’t wipe my own arse. It’s just you know I need the full-

NIKKI-           You need the whole hog, but yet you were only offered four visits.

ASTA-           “There’s just no more funding we can provide”. I said, “What’s the solution then?”, and he said, “Well, residential care”. So he said, “The only feasible thing we can do in your circumstances is to look at residential care”. At that point I was at the end of my rope in terms of care and stuff because I just wanted to feel secure.

NIKKI-           Yeah.

ASTA-           And I said to him, “Well, okay. This is really bad, but look into it”. So to cut a long story short, I moved into a care home.

NIKKI-           So how old were you then?

ASTA-           This was three years ago. 37.

NIKKI-           A bit too young to be in a care home.

ASTA-           Yeah, 36/37/38. The thing that bugged me is that social services would rather have put me into a care home than provide a little bit more funding to give me that life of living by myself. The care home cost £1,250 a week, and to care for me at home in my own place would have been half that. Then I start to think to myself, ‘What do people do in my position who can’t speak out?’.

EMMA-         Is it all right to ask what it was like day-to-day living in the care home?

ASTA-           [Sighs] Living in the care home was tough. On one level it was great because I could come and go as I please. But on the other hand you were still living in a care home.

EMMA-         And did you get the care you needed? Were you in your own flat, were you in a room? Did you get the food, the care?

ASTA-           I had my own little flat, and the care was there all the time. It was scary on one level, but it was an experience that I needed to have.

EMMA-         Did you make any friends?

ASTA-           Yeah. There were some great people in there. So funny. Sometimes we used to go into the lounge and stuff, and you could make a comedy show about some of the stuff that people came out with in there. They were lovely. It’s sad as well because there was a lot of people that wanted to live independently and it was impossible.

EMMA-         And that’s three years ago, that’s not 30 years ago.

NIKKI-           That’s what I’m saying, that’s everything that Baroness Jane Campbell fought for, wasn’t it, independent living, like to get away from that community setting.

EMMA-         That’s right.

ASTA-           Yeah. So then I moved in with my mum and dad. I advertised for a PA for two years.

NIKKI-           Oh wow!

ASTA-           A direct payment. Nothing. There’s a major, major problem in the social care. And it’s because always refer to social care as people elderly, but there are an awful lot of young people with disabilities who also need the social care support. But it’s just not there.

NIKKI-           I think a lot of young working age disabled people have certainly told me many, many, many times that they are just forgotten.

ASTA-           It’s almost like it doesn’t matter, they’ll go away, or it’ll be swept under the rug. Also, what happens when my mum and dad aren’t there?

NIKKI-           I know. It’s also worth mentioning actually to Asta and some of our listeners that we covered the issue of PAs and lack of and people trying to find anyone, anyone, and also get the right support. That episode was out on 2 September, so you can go back on BBC Sounds and have a little look for that.

MUSIC-         Music

ASTA-           I have met a partner recently. I met this incredible human being. It’s so beautifully organic the way it’s happened. As far as care and support and stuff, obviously I’ve discussed this with Charlotte, and she says there is absolutely no way that I would see you go into social care or need support.

EMMA-         Asta interviewed his parents for his podcast, Asta Vision, about them being his carers, as he says. He said, “Do you not need a break, mum and dad?”, and they said, “Oh well, you know now you’ve found Charlotte we get a bit of a break”, and they sounded a bit relieved about that.

ASTA-           [Laughs]

EMMA-         I honestly do think, because I met Robin just as I was moving to London, and I do think my mum was relieved because I had someone to watch out for me, which is fairly standard. But Nikki and Asta, do you think your parents are a little bit relieved because there’s someone who’s younger than them who you’re their favourite person?

ASTA-           From my perspective and from my parents’ perspective, I think it’s more of a feeling of security that they know I’ll be okay.

NIKKI-           What’s next for you, Asta?

ASTA-           Good Morning Britain have approached me to see if I want to be on their panel sometime, so that’s exciting. I think it’s starting. You know when the ice starts to melt and you see little gaps in it, I can see little chinks of light.

NIKKI-           Yeah, yeah, yeah.

EMMA-         When you were on Steph’s Packed Lunch, the clip that we use is when Paul Brunson from Married at First Sight was in, and he was giving you some advice, Asta, on how to find love and how to find your soulmate. So I just wondered, you found someone recently, tell disabled people listening to Access All the best way to find their soulmate.

ASTA-           Do you know where I think people go wrong, is that they try to be someone else.

NIKKI-           Yeah.

ASTA-           And to me that’s just ripping myself off of who I am. And as soon as I start to connect with who I am, then the universe really opens up.

NIKKI-           Yeah.

EMMA-         You also said you need to be on three dating apps.

ASTA-           Yeah. Tinder.

NIKKI-           What?

EMMA-         And that’s where you found Charlotte, isn’t it, Tinder?

ASTA-           It was. Yes, it was.

EMMA-         Asta, thank you.

NIKKI-           Keep in touch.

ASTA-           Love you both. Thank you.

NIKKI-           You too, darling. Take care. [Blows a kiss]

ASTA-           Thank you. You too.

MUSIC-         Theme music

NIKKI-           Well, if you enjoyed today’s podcast then please do subscribe to us on BBC Sounds. And you can tell your friends about us as well if you like, because word of mouth is very important in the world of podcasts.

EMMA-         And that’s my excuse for talking about the podcast all the time.

NIKKI-           We’ll see you next week. Bye.

EMMA-         Bye.

MUSIC-         Theme music

 

[TRAILER]

FEMALE-      I could feel our house shaking.

MALE-           That was one of the scariest battles.

MALE-           I’m traumatised. I’m completely destroyed.

VICTORIA-   Hello, I’m Victoria Derbyshire, one of the hosts of Ukrainecast. We actually put out the first episode of Ukrainecast on the very first day of the war when Russia invaded Ukraine.

MALE-           This is a European country and it’s at war. It’s extraordinary.

VICTORIA-   So much has happened since then, and all the way through we’ve been trying to tell people’s stories, what’s really happening on the ground in Ukraine.

FEMALE-      My elder daughter was lying on the ground. She had been dead.

VICTORIA-   And we’ll be here for you making sense of it all for as long as we need to be.

MALE-           People were being snatched and disappearing.

FEMALE-      People took to the streets even after the Ukrainian forces had gone. [In the background the sound of people demonstrating]

VICTORIA-   Ukrainecast is made by the same BBC news team that makes this podcast.

MALE-           Is this it? This is the war of the darkest evil against all the humanity.

VICTORIA-   Listen to Ukrainecast on Mondays, Wednesdays and Fridays. Just search for Ukrainecast on BBC Sounds.