大象传媒

28th October 2022

bbc.co.uk/accessall

Access All 鈥� episode 24

听

Presented by Nikki Fox and Emma Tracey

听

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

NIKKI-听听听听听听听听听听 What a name. I love it.

EMMA-听听听听听听听听 I know, what a showbiz name. He鈥檚 got a tattoo with a hand saying 鈥業 love you鈥� in BSL, and a cochlear implant. I just don鈥檛 know what to make of it. I just think it鈥檚 very forever.

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

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

NIKKI-听听听听听听听听听听 Oh no. No. I鈥檇 get a wheelchair on my ass!

EMMA-听听听听听听听听 [Laughs] Would you not?

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

EMMA-听听听听听听听听 Well, I just don鈥檛 like pain.

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

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

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

EMMA-听听听听听听听听 I mean I could do. I鈥檝e been thinking about this and-

NIKKI-听听听听听听听听听听 About me?

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

NIKKI-听听听听听听听听听听 I鈥檝e had the brows tattooed.

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

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

EMMA-听听听听听听听听 Nobody told me they wear off.

NIKKI-听听听听听听听听听听 Depends what you do to your face.

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

NIKKI-听听听听听听听听听听 Oh wow!

EMMA-听听听听听听听听 That鈥檚 a lot of tattoo. So I was thinking either make-up, because that鈥檒l 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鈥檚 visually impaired.

NIKKI-听听听听听听听听听听 A fluorescent tattoo?

EMMA-听听听听听听听听 Well I don鈥檛 know because I can鈥檛 see, so I don鈥檛 know about colours.

NIKKI-听听听听听听听听听听 I don鈥檛 know. I mean you know you can get colours on tattoos, obviously, but a fluoro one, Em, I think might be pushing it.

EMMA-听听听听听听听听 Do you think?

NIKKI-听听听听听听听听听听 Although anyone who鈥檚 a tattoo expert please tell me that I鈥檓 talking rubbish.

EMMA-听听听听听听听听 A friend of mine once was very excited because she got a tattoo, and she said, 鈥淨uick, quick, come and see my tattoo because it鈥檚 still a bit scabby鈥�, so I could feel the shape of the tattoo. And that鈥檚 the only tattoo I鈥檝e 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-听听听听听听听听听听 Well, if I ever get my eyebrows tattooed again, you can feel my scabby brows.

EMMA-听听听听听听听听 That would be great!

NIKKI-听听听听听听听听听听 Yeah? If you like feeling scabby things, I鈥檒l like you touch me up, love!

MUSIC-听听听听听听听听 Theme music

NIKKI-听听听听听听听听听听 It鈥檚 Access All, our weekly disability and mental health podcast, made by the same 大象传媒 team as Americast and Ukrainecast and Newscast, all the biggies. I鈥檓 Nikki Fox, and I鈥檓 in London.

EMMA-听听听听听听听听 And I鈥檓 Emma Tracey, and I鈥檓 also in London.

NIKKI-听听听听听听听听听听 Yes. I love it when you鈥檙e in London.

EMMA-听听听听听听听听 I love it too.

NIKKI-听听听听听听听听听听 I鈥檒l tell you what, Emma, I got quite excited about the podcast this week.

EMMA-听听听听听听听听 Did you?

NIKKI-听听听听听听听听听听 Yeah. Do you know why?

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

NIKKI-听听听听听听听听听听 So do I. But I get quite nervous. You know obviously we record these bits and it鈥檚 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.听 But I actually did something.

EMMA-听听听听听听听听 Did you?

NIKKI-听听听听听听听听听听 I went out at the weekend. It was a placed called Sheffield Park. It wasn鈥檛 in Sheffield, which is my mum鈥檚 hometown, big up Sheffield. My boyfriend had booked it. Before I met Dave, honestly I鈥檇 watched Countryfile and I was dead inside, like I just thought the countryside was so inaccessible I just didn鈥檛 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-听听听听听听听听 Ooh.

NIKKI-听听听听听听听听听听 But they weren鈥檛 just any mobility scooter, they were tandem scooters.

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

NIKKI-听听听听听听听听听听 Well I鈥檓 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-听听听听听听听听 Okay. So it could be a non-disabled person and a disabled person on it.

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

EMMA-听听听听听听听听 I鈥檇 love that.

NIKKI-听听听听听听听听听听 That would be quite good fun actually.

EMMA-听听听听听听听听 I would love that. But you would have to audio describe it because you know I wouldn鈥檛 be able to feel or see the trees if I was on the back of a scooter.

NIKKI-听听听听听听听听听听 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鈥檝e got to imagine, right, it鈥檚 very long, it鈥檚 like the pimp machine of the scooter world. It鈥檚 not just any scooter.

EMMA-听听听听听听听听 Stretch.

NIKKI-听听听听听听听听听听 It鈥檚 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鈥檛 have to do anything. I鈥檇 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鈥檇 need a car park to turn that around.

EMMA-听听听听听听听听 Was it like one of those trucks that actually talks when it鈥檚 reversing?

NIKKI-听听听听听听听听听听 Yeah, it needed that, 鈥淭his vehicle is reversing鈥�, like an HGV. It needed it. Because I saw an older fella using it and oh, he went straight into a hedge.

EMMA-听听听听听听听听 Oh, gosh.

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

EMMA-听听听听听听听听 Yeah.

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

EMMA-听听听听听听听听 But isn鈥檛 it great that they have that sort of thing.

NIKKI-听听听听听听听听听听 Isn鈥檛 it. What else has happened this week, Emma?

MUSIC-听听听听听听听听 Strictly theme tune in background

EMMA-听听听听听听听听 Well, I watched my second episode of Strictly ever, because I鈥檓 keen to see Ellie. Obviously I can鈥檛 see her dancing, but I鈥檓 keen to know how she鈥檚 doing, and she still is very, very much there.

NIKKI-听听听听听听听听听听 She鈥檚 amazing.

EMMA-听听听听听听听听 She鈥檚 doing great.

NIKKI-听听听听听听听听听听 My family love her.

EMMA-听听听听听听听听 This week coming up is the Halloween special.

NIKKI-听听听听听听听听听听 Yes.

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

NIKKI-听听听听听听听听听听 Oh wow! I like the authentic music.

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

NIKKI-听听听听听听听听听听 Oh, me too.

EMMA-听听听听听听听听 Because I don鈥檛 know what I look like, never mind what anybody else looks like.

NIKKI-听听听听听听听听听听 Yeah.

EMMA-听听听听听听听听 And like a mask to me just feels like a bit of plastic, it doesn鈥檛 feel like what it鈥檚 supposed to look like. I avoid it at all costs, and I have one sort of 1920鈥檚 skirt and top that I wear every single time and I鈥檓 like, 鈥榊eah, I鈥檓 in fancy dress, I鈥檝e met the brief鈥�.

NIKKI-听听听听听听听听听听 Yeah.

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

NIKKI-听听听听听听听听听听 Oh no. No. It鈥檚 taken a very long while for me to develop anything that resembles a style, Emma, you know what looks right and what doesn鈥檛.

EMMA-听听听听听听听听 Yeah.

NIKKI-听听听听听听听听听听 So I have a little style that I stick to, and I鈥檓 very comfortable. Mainly it鈥檚 a maxi dress, a blazer over the shoulders, bright pink lipstick, bleach blonde hair, Madge from Benidorm. I can鈥檛 be faffing around with getting other clothes that I have to think about.

EMMA-听听听听听听听听 Yeah.

NIKKI-听听听听听听听听听听 I don鈥檛 have enough time. Don鈥檛 have enough money. You鈥檙e not going to wear it again, are you? I don鈥檛 like waste, Emma.

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

NIKKI-听听听听听听听听听听 He works it.

EMMA-听听听听听听听听 He really works it.

NIKKI-听听听听听听听听听听 The only time I ever had to dress up was for my friend鈥檚 hen do, and I can鈥檛 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, 鈥淵ou go as a nurse, I鈥檒l go as the patient in a wheelchair鈥�.

EMMA-听听听听听听听听 [Laughs]

NIKKI-听听听听听听听听听听 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-听听听听听听听听 That鈥檚 perfect!

NIKKI-听听听听听听听听听听 That鈥檚 the most effort I鈥檝e ever gone to.

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

NIKKI-听听听听听听听听听听 Awwh.

EMMA-听听听听听听听听 I just didn鈥檛 know what else to do.

NIKKI-听听听听听听听听听听 In a binbag?

EMMA-听听听听听听听听 You know you wear the black bag. I don鈥檛 know why you wear a black bag.

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

EMMA-听听听听听听听听 I don鈥檛 know. It鈥檚 something to do with-

NIKKI-听听听听听听听听听听 Who told you to do that?

EMMA-听听听听听听听听 [Laughs]

NIKKI-听听听听听听听听听听 Who told you to wear a black bag?

EMMA-听听听听听听听听 Other people were doing it as well.

NIKKI-听听听听听听听听听听 Somebody was taking the-听听听

EMMA-听听听听听听听听 [Laughs]

NIKKI-听听听听听听听听听听 Somebody was taking the mickey.

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

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

MUSIC-听听听听听听听听 Music

NIKKI-听听听听听听听听听听 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鈥檚 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鈥檚 been horrified by a lack of information is an understatement. Anna, thank you so much for joining us today. How are you feeling?

ANNA-听听听听听听听听听 Actually I鈥檓 feeling pretty good today. Thank you for asking, Nikki.

NIKKI-听听听听听听听听听听 Well you sound very chipper. But Anna, we鈥檙e 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-听听听听听听听听听 I think the challenges that I鈥檝e experienced have been around accessing information about breast cancer. Accessing information about the surgical procedures and the processes that I鈥檓 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鈥檚 a systemic failure.

My observation is that certainly in my NHS Trust the system simply wasn鈥檛 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鈥檛 be rotated so that you could only read it if it was upside-down.

NIKKI-听听听听听听听听听听 Right.

ANNA-听听听听听听听听听 Things like consent forms where a surgeon may have written on a consent form, because they鈥檙e 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鈥檛 possible to provide large print instructions for my drugs. I鈥檇 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鈥檝e 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鈥檓 being asked to take, and I鈥檝e 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鈥檛 need new ones. You will always need to re-issue the instructions.

NIKKI-听听听听听听听听听听 Because I would imagine as well, Anna, when you鈥檝e 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鈥檚 a lot of decisions to be made. And to make a decision we all need information, it鈥檚 key, it鈥檚 power, isn鈥檛 it?

ANNA-听听听听听听听听听 It probably didn鈥檛 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鈥檚 absolute clarity that the risks are understood. Certainly in my case I don鈥檛 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鈥檛 had access to that information.

NIKKI-听听听听听听听听听听 Emma, I know you鈥檝e been looking into this for us. Anna鈥檚 experience is not an isolated one, is it, it鈥檚 far more wide-ranging.

EMMA-听听听听听听听听 It really is wide-ranging. And it鈥檚 not just blind people either, it鈥檚 anyone with any communication needs, so if you鈥檙e deaf, dyslexic, etc. You know what, we shouldn鈥檛 even be having this conversation, Nikki, because they were rules implemented in 2016 and they鈥檙e called the Accessible Information Standard, and they鈥檙e actually legally binding in all NHS settings. They鈥檙e 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鈥檙e blind and a braille reader or audio maybe, or an email. It might be a text instead of a phone call if you鈥檙e deaf.

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

EMMA-听听听听听听听听 No it doesn鈥檛. 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鈥檛 always know about it from Anna鈥檚 story. There was some work done with a coalition of charities, so the RNIB that you鈥檙e the Chair of, the RNID which looks after deaf people.

ANNA-听听听听听听听听听 That鈥檚 right.

EMMA-听听听听听听听听 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-听听听听听听听听听听 We鈥檝e been sent a few messages via the RNID, that鈥檚 the Royal National Institute for Deaf People, about the challenges they faced at healthcare appointments. So Mel from Sandhurst said:

MEL-听听听听听听听听听听听听 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, 鈥淲ait next to the desk and we鈥檒l ask someone to come for you鈥�. It was awful. Everyone was staring at me as if to say, 鈥榃hy鈥檚 she hanging around here?鈥�. I felt like a child.

NIKKI-听听听听听听听听听听 Nicola from East Grinstead said:

NICOLA-听听听听听听 The BSL interpreter didn鈥檛 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-听听听听听听听听 I also spoke to Abigail Gorman, and she鈥檚 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鈥檚 written. There鈥檚 nobody checking that it鈥檚 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-听听听听听听听听听听 Because they don鈥檛 think there鈥檚 a problem.

EMMA-听听听听听听听听 Yeah.

NIKKI-听听听听听听听听听听 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-听听听听听听听听听 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-听听听听听听听听听听 Yeah.

ANNA-听听听听听听听听听 And I don鈥檛 want anyone to go through the stress that I feel this has put me under. It鈥檚 made me livid.

NIKKI-听听听听听听听听听听 We also contacted your NHS Trust, Hampshire Hospitals NHS Foundation. Its Chief Executive, Alex Whitfield said, 鈥榠t鈥檚 clear from Miss Tylor鈥檚 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鈥�. She adds that all patient information is available in both standard and large print online.

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

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

MUSIC-听听听听听听听听 Access All

NIKKI-听听听听听听听听听听 It鈥檚 actually Breast Cancer Awareness Month, and Blindness Awareness Month.

EMMA-听听听听听听听听 It is a reason to talk about this a bit more, isn鈥檛 it, and to bring it into the next section of the pod.

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

ANNA-听听听听听听听听听 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鈥檓 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 鈥榠f the door is shut, use the side entrance鈥�. But I didn鈥檛 know where the side entrance was.

EMMA-听听听听听听听听 When you鈥檙e in hospital it鈥檚 spatial awareness.

ANNA-听听听听听听听听听 Yeah.

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

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

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

NIKKI-听听听听听听听听听听 Right.

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

NIKKI-听听听听听听听听听听 Awwh.

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

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

ANNA-听听听听听听听听听 Well, it just feels as if... imagine you鈥檙e wearing a pair of gloves or something like that, or you just can鈥檛 quite feel things as sharply as you might do normally.

NIKKI-听听听听听听听听听听 Yeah.

EMMA-听听听听听听听听 That鈥檚 really scary for me. I hate wearing gloves so much because I just can鈥檛 get on with them at all.

ANNA-听听听听听听听听听 Absolutely. Yeah.

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

NIKKI-听听听听听听听听听听 Oh wow!

EMMA-听听听听听听听听 Well yeah, because you鈥檙e using your hands. Your hands aren鈥檛 your eyes, that鈥檚 rubbish. But your hands are taking in a lot of the information that someone else鈥檚 eyes are taking in. So you need to know by touch that 鈥� I don鈥檛 know 鈥� that there鈥檚 dirt on the countertop.

Some people do lose their hair, don鈥檛 they, when they鈥檙e going through chemo. Has that happened to you, and how have you managed that?

ANNA-听听听听听听听听听 I have lost my hair. I鈥檝e 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鈥檚 rather bald in patches and he鈥檚 got to the odd tuft of hair left, and I look a bit like Jock the dog.

NIKKI-听听听听听听听听听听 Jock.

ANNA-听听听听听听听听听 You know, a sort of slightly alopecia stuffed toy. I鈥檝e 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鈥檓 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鈥檛 anything you can鈥檛 learn either by asking a friend or watching a YouTube video or just sort of working it out. I鈥檝e been really fortunate that I鈥檓 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-听听听听听听听听 Awwh.

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

NIKKI-听听听听听听听听听听 Yeah, I love that.

ANNA-听听听听听听听听听 I鈥檝e got some great 1980鈥檚/1990鈥檚 earrings that I was on the cusp of throwing out.

NIKKI-听听听听听听听听听听 Oh yes!

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

EMMA-听听听听听听听听 Nikki loves her big, big earrings.

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

ANNA-听听听听听听听听听 So I鈥檓 sort of getting all these out and having some fun, because why wouldn鈥檛 I? I was invited to attend the late Queen鈥檚 funeral and I was bald, it was at the height of my hair falling out, and it was extremely uncomfortable, I couldn鈥檛 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鈥檛 turn out too badly.

NIKKI-听听听听听听听听听听 I鈥檝e absolutely, well we鈥檝e both loved speaking to you, Anna. This is such an important issue. We鈥檇 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 鈥榓ccess鈥� if you can at the front of your message so that we know that it鈥檚 meant for us. Thank you so much.

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

NIKKI-听听听听听听听听听听 Yeah, I hope it鈥檚 all right, darling.

ANNA-听听听听听听听听听 Thank you, guys.

MUSIC-听听听听听听听听 Access All

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

FEMALE-听听听听听 You have had relationships, haven鈥檛 you, you鈥檝e had girlfriends in the past?

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

NIKKI-听听听听听听听听听听 It鈥檚 Asta Philpot.

ASTA-听听听听听听听听听听 Thank you.

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

ASTA-听听听听听听听听听听 Hi.

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

ASTA-听听听听听听听听听听 Yeah they are, yeah.

EMMA-听听听听听听听听 And then you鈥檙e Asta.

ASTA-听听听听听听听听听听 I know, it鈥檚 random.

EMMA-听听听听听听听听 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 鈥楢sta, Miami is glad you鈥檙e here鈥�.

ASTA-听听听听听听听听听听 Yeah.

EMMA-听听听听听听听听 How cute is that!

ASTA-听听听听听听听听听听 Yeah.

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

ASTA-听听听听听听听听听听 It鈥檚 fun. It鈥檚 a lot of fun. Steph makes it a lot of fun.

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

ASTA-听听听听听听听听听听 It鈥檚 quite serious. Anything from politics to people doing random things in society. But it鈥檚 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-听听听听听听听听听听 Give me a run down of your working life up to this point, like what kind of stuff have you done? Because you鈥檙e aiming to be more on TV, aren鈥檛 you?

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

NIKKI-听听听听听听听听听听 That鈥檚 it.

ASTA-听听听听听听听听听听 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 大象传媒 鈥楩or one night only鈥� 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鈥檚 kind of progressed from there and it鈥檚 gone on and on and on really. I鈥檝e 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-听听听听听听听听听听 Yeah. When it comes to diversity, when it comes to disability on screen, we know that there鈥檚 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-听听听听听听听听听听 It鈥檚 a hard one to figure, isn鈥檛 it? I鈥檒l 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, 鈥淲hat鈥檚 the problem?鈥�. I didn鈥檛 really get an answer, but the feeling I got is it鈥檚 almost a fear. People say to me, 鈥淒o you think disability鈥檚 changed in society and media and stuff like that?鈥�, and I鈥檓 like well yes, in one hand yeah we鈥檝e got the Paralympics and stuff like that. But has it really? Are people going to take the leap and actually say, 鈥淗ey, we can recognise your talent, we鈥檙e going to give you a chance鈥�. Because that鈥檚 what it takes. That鈥檚 what it needs.

NIKKI-听听听听听听听听听听 Yeah, you鈥檙e right.

ASTA-听听听听听听听听听听 Especially in my circumstance.

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

NIKKI-听听听听听听听听听听 And support, yeah.

EMMA-听听听听听听听听 Yeah, and support.

ASTA-听听听听听听听听听听 Me too.

EMMA-听听听听听听听听 Yeah. So we鈥檝e 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-听听听听听听听听听听 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-听听听听听听听听听听 Oh wow!

ASTA-听听听听听听听听听听 I said to them, 鈥淟ook, I need someone鈥�, because they said, 鈥淲e can offer you four visits a day鈥�, and I said to them, 鈥淲hat happens in-between the four visits if I need to go to the loo?鈥�.

NIKKI-听听听听听听听听听听 PAs, personal assistants are like carers, aren鈥檛 they.

ASTA-听听听听听听听听听听 Yeah.

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

ASTA-听听听听听听听听听听 I need all the support. I need full support. Basically I can鈥檛 use my arms or legs. I can鈥檛 feed myself. I can鈥檛 wipe my own arse. It鈥檚 just you know I need the full-

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

ASTA-听听听听听听听听听听 鈥淭here鈥檚 just no more funding we can provide鈥�. I said, 鈥淲hat鈥檚 the solution then?鈥�, and he said, 鈥淲ell, residential care鈥�. So he said, 鈥淭he only feasible thing we can do in your circumstances is to look at residential care鈥�. 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-听听听听听听听听听听 Yeah.

ASTA-听听听听听听听听听听 And I said to him, 鈥淲ell, okay. This is really bad, but look into it鈥�. So to cut a long story short, I moved into a care home.

NIKKI-听听听听听听听听听听 So how old were you then?

ASTA-听听听听听听听听听听 This was three years ago. 37.

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

ASTA-听听听听听听听听听听 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 拢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, 鈥榃hat do people do in my position who can鈥檛 speak out?鈥�.

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

ASTA-听听听听听听听听听听 [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-听听听听听听听听 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-听听听听听听听听听听 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-听听听听听听听听 Did you make any friends?

ASTA-听听听听听听听听听听 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鈥檚 sad as well because there was a lot of people that wanted to live independently and it was impossible.

EMMA-听听听听听听听听 And that鈥檚 three years ago, that鈥檚 not 30 years ago.

NIKKI-听听听听听听听听听听 That鈥檚 what I鈥檓 saying, that鈥檚 everything that Baroness Jane Campbell fought for, wasn鈥檛 it, independent living, like to get away from that community setting.

EMMA-听听听听听听听听 That鈥檚 right.

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

NIKKI-听听听听听听听听听听 Oh wow!

ASTA-听听听听听听听听听听 A direct payment. Nothing. There鈥檚 a major, major problem in the social care. And it鈥檚 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鈥檚 just not there.

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

ASTA-听听听听听听听听听听 It鈥檚 almost like it doesn鈥檛 matter, they鈥檒l go away, or it鈥檒l be swept under the rug. Also, what happens when my mum and dad aren鈥檛 there?

NIKKI-听听听听听听听听听听 I know. It鈥檚 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 大象传媒 Sounds and have a little look for that.

MUSIC-听听听听听听听听 Music

ASTA-听听听听听听听听听听 I have met a partner recently. I met this incredible human being. It鈥檚 so beautifully organic the way it鈥檚 happened. As far as care and support and stuff, obviously I鈥檝e 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-听听听听听听听听 Asta interviewed his parents for his podcast, Asta Vision, about them being his carers, as he says. He said, 鈥淒o you not need a break, mum and dad?鈥�, and they said, 鈥淥h well, you know now you鈥檝e found Charlotte we get a bit of a break鈥�, and they sounded a bit relieved about that.

ASTA-听听听听听听听听听听 [Laughs]

EMMA-听听听听听听听听 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鈥檚 someone who鈥檚 younger than them who you鈥檙e their favourite person?

ASTA-听听听听听听听听听听 From my perspective and from my parents鈥� perspective, I think it鈥檚 more of a feeling of security that they know I鈥檒l be okay.

NIKKI-听听听听听听听听听听 What鈥檚 next for you, Asta?

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

NIKKI-听听听听听听听听听听 Yeah, yeah, yeah.

EMMA-听听听听听听听听 When you were on Steph鈥檚 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-听听听听听听听听听听 Do you know where I think people go wrong, is that they try to be someone else.

NIKKI-听听听听听听听听听听 Yeah.

ASTA-听听听听听听听听听听 And to me that鈥檚 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-听听听听听听听听听听 Yeah.

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

ASTA-听听听听听听听听听听 Yeah. Tinder.

NIKKI-听听听听听听听听听听 What?

EMMA-听听听听听听听听 And that鈥檚 where you found Charlotte, isn鈥檛 it, Tinder?

ASTA-听听听听听听听听听听 It was. Yes, it was.

EMMA-听听听听听听听听 Asta, thank you.

NIKKI-听听听听听听听听听听 Keep in touch.

ASTA-听听听听听听听听听听 Love you both. Thank you.

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

ASTA-听听听听听听听听听听 Thank you. You too.

MUSIC-听听听听听听听听 Theme music

NIKKI-听听听听听听听听听听 Well, if you enjoyed today鈥檚 podcast then please do subscribe to us on 大象传媒 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-听听听听听听听听 And that鈥檚 my excuse for talking about the podcast all the time.

NIKKI-听听听听听听听听听听 We鈥檒l see you next week. Bye.

EMMA-听听听听听听听听 Bye.

MUSIC-听听听听听听听听 Theme music

听

[TRAILER]

FEMALE-听听听听听 I could feel our house shaking.

MALE-听听听听听听听听听听 That was one of the scariest battles.

MALE-听听听听听听听听听听 I鈥檓 traumatised. I鈥檓 completely destroyed.

VICTORIA-听听 Hello, I鈥檓 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-听听听听听听听听听听 This is a European country and it鈥檚 at war. It鈥檚 extraordinary.

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

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

VICTORIA-听听 And we鈥檒l be here for you making sense of it all for as long as we need to be.

MALE-听听听听听听听听听听 People were being snatched and disappearing.

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

VICTORIA-听听 Ukrainecast is made by the same 大象传媒 news team that makes this podcast.

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

VICTORIA-听听 Listen to Ukrainecast on Mondays, Wednesdays and Fridays. Just search for Ukrainecast on 大象传媒 Sounds.