大象传媒

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06th April 2023

bbc.co.uk/accessall

Access All 鈥� episode 47

Presented by Nikki Fox and Emma Tracey

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NIKKI-听听听听听听听听听听听听 Ooh, I forgot to tell you actually, my sister got these blow-up legs the other day.

EMMA-听听听听听听听听听听 What?!

NIKKI-听听听听听听听听听听听听 I tried them for the first time. Emma, oh.

EMMA-听听听听听听听听听听 Blow-up legs? Did you just say blow-up legs?

NIKKI-听听听听听听听听听听听听 Yeah. I mean, I鈥檓 sort of, I鈥檓 misrepresenting that. I have no idea what they鈥檙e actually called.

EMMA-听听听听听听听听听听 What are they?

NIKKI-听听听听听听听听听听听听 They鈥檙e inflatable legs. You put them on when you鈥檙e lying down. You zip them up, you put them on a setting, and they basically inflate, like you鈥檙e having your blood pressure done, and they kind of work on different parts of you. Oh, my sister, her legs are like three times smaller. Not because Rachel鈥檚 big in any way, it鈥檚 just Rachel and I get a lot of swelling, water retention, and it鈥檚 like a lymphatic 鈥� these blow-up babies, honestly.

EMMA-听听听听听听听听听听 Do they look medical or do they look fun?

NIKKI-听听听听听听听听听听听听 I鈥檇 probably wear them on a night out, do a Shania Twain wearing them. But no, they鈥檙e medical. They are for people that need regular lymphatic draining.

EMMA-听听听听听听听听听听 Oh, that鈥檚 really sexed them up for me.

NIKKI-听听听听听听听听听听听听 Yeah, that鈥檚 a bit of a downer, innit?

EMMA-听听听听听听听听听听 Do you have to blow them up with your mouth or does someone else, like a pump?

NIKKI-听听听听听听听听听听听听 No, you pack them in, baby, and off they go.

MUSIC-听听听听听听听听听听 Theme music.

NIKKI-听听听听听听听听听听听听 It鈥檚 Access All, the 大象传媒鈥檚 disability and mental health podcast. We鈥檙e here every single week with a unique and hopefully hilarious look at what life is like if you鈥檙e disabled. I鈥檓 Nikki Fox and I鈥檓 in London.

EMMA-听听听听听听听听听听 And I鈥檓 Emma Tracey in Edinburgh.

NIKKI-听听听听听听听听听听听听 And this week, with an all-women production team, we are finally talking smear tests.

EMMA-听听听听听听听听听听 Woo-hoo.

NIKKI-听听听听听听听听听听听听 Hopefully busting a few myths, and finding out why they can be so hard to arrange.

EMMA-听听听听听听听听听听 We鈥檒l also be meeting an author who鈥檚 managed to bring together romance, chess and arthritis into a young adult novel that I literally couldn鈥檛 put down.

NIKKI-听听听听听听听听听听听听 And we鈥檙e also going a little bit sci-fi, aren鈥檛 we, getting in on the old Chat GPT talk. I have no idea what I鈥檝e just said. But we are going to be finding out what it all means for disabled people.

We鈥檙e on 大象传媒 Sounds or wherever you get your podcast from. Just search for Access All and if you like us don鈥檛 forget to subscribe, she says, with little cute voice. Shall we get on with the show, Emma?

EMMA-听听听听听听听听听听 Let鈥檚 do it.

NIKKI-听听听听听听听听听听听听 I鈥檓 so glad we鈥檙e covering this story today, Ems, because as you know I鈥檝e got a bit of personal experience, and it also means I get to say my favourite word 鈥� sorry dad 鈥� vagina.

EMMA-听听听听听听听听听听 Well, it鈥檚 a very important subject.

NIKKI-听听听听听听听听听听听听 鈥�and women鈥檚 problems.

EMMA-听听听听听听听听听听 Yes! And I feel like you鈥檝e been waiting nearly a year for this subject to come up, and I鈥檓 delighted it has as well.

NIKKI-听听听听听听听听听听听听 I have. Literally since we started this podcast, Emma, I鈥檝e been waiting for this subject to come up. I think I鈥檝e pitched it in every meeting pretty much.

EMMA-听听听听听听听听听听 Most of them anyway.

NIKKI-听听听听听听听听听听听听 Because today we鈥檙e looking at the problems many disabled women can face when trying to access the appropriate gynaecological care. It鈥檚 a huge topic. So, today we鈥檙e going to focus primarily on cervical smears. Now, like I said, I have got some experience, some good, some bad, some downright ugly. I鈥檒l go into all that shortly. But the wider picture is pretty shocking, isn鈥檛 it, Em?

EMMA-听听听听听听听听听听 Yes, it is. We鈥檝e heard about physically disabled women not being able to have their smear tests due to lack of adapted beds, so I guess adjustable beds and with the right stirrups etc. We鈥檝e heard of women with learning disabilities who have been afraid to undergo a smear test because of lack of information. And there are over 7 million disabled women in the UK, and the research suggests that they鈥檙e more likely to have a delayed diagnosis or to die from cervical cancer partly due to a lower screening uptake.

NIKKI-听听听听听听听听听听听听 Just not going for that smear?

EMMA-听听听听听听听听听听 Yeah, just not going to it, due to fear, due to the place not being set up for them, due to the information not being in an easy to read format.

NIKKI-听听听听听听听听听听听听 In 2019 Jo鈥檚 Cervical Cancer Trust carried out research of their own. It was a research project called We鈥檙e Made to Feel Invisible. Now, the research spoke to women with a physical disability about barriers to cervical screening and found that 88% of women in this group find it harder to access or attend cervical screenings. 88%! It also found 49% chose not to attend based on previous bad experience. Now, we are joined by Samantha Dixon, who is the CEO of Jo鈥檚 Cervical Cancer Trust, to help us explore this subject a bit better. Hello Samantha.

SAMANTHA-听 Hello there.

NIKKI-听听听听听听听听听听听听 Thank you so much for coming on the pod to talk about this.

SAMANTHA-听 Not at all. Delighted to be here.

NIKKI-听听听听听听听听听听听听 Now, for those who don鈥檛 know, what is a cervical smear?

SAMANTHA-听 So, cervical screening, otherwise known as a smear test, is a test which actually helps prevent cervical cancer. And it does that by checking for a virus called high-risk HPV, human papillomavirus. So, a lot of people think it鈥檚 a test to detect cancer, but it actually is a test to prevent cervical cancer from developing in the first place, and that鈥檚 why it鈥檚 so important. And in the UK women and other people with a cervix aged between 25 and 64 are invited to cervical screening or a smear test either every three or five years, depending on where you live and your age. But some women will be invited more regularly if they need to be more closely monitored. And that isn鈥檛 something to be worried about; that鈥檚 a really good thing.

NIKKI-听听听听听听听听听听听听 So, what you鈥檙e saying, Samantha, is they鈥檙e a preventative measure really then, aren鈥檛 they, cervical smears? That鈥檚 why they鈥檙e so important.

SAMANTHA-听 Absolutely. Cervical screening saves lives. And almost every case of cervical cancer, something like 99.7% of cases are caused by some strains of HPV, human papillomavirus. It鈥檚 a really common virus, and most of us will get it at some point in our lives, eight of ten of us will. I鈥檝e probably had it and don鈥檛 even know it. And normally the body clears the virus, often with us not even knowing we鈥檝e had it. But there are a few types of HPV that if they persist can cause cervical cells to change, which if left untreated in some cases can develop into cervical cancer. So, cervical screening means that we identify those women and other people with a cervix at higher risk of developing cervical cancer at the earliest possible stage, and then monitor or treat them.

NIKKI-听听听听听听听听听听听听 Potentially silly question alert here, Samantha. Do you get the HPV virus from having nookie-nooks?

SAMANTHA-听 Well, HPV 鈥� and we鈥檙e still learning lots about it 鈥� tends to be spread by close intimate skin-to-skin contact, so it can be intercourse, but it can also just be touching and kind of things like that. But as I say, it鈥檚 very common, and we know lots of women go for their screening, are told that they HPV, and get quite worried about it. on our helpline at Jo鈥檚 we hear from lots of women who feel this is a real stigma, they don鈥檛 understand how they鈥檝e got it. And I鈥檇 say to any women out there who do get this very common virus, if you鈥檙e worried go on the Jo鈥檚 website, because there鈥檚 lots of information that can really help you to understand it and feel better about it.

NIKKI-听听听听听听听听听听听听 Because one of the reasons why I asked that, Samantha, my sister, who won鈥檛 mind me telling you this, is physically disabled, and she went for her smear test some time ago and she wheeled in in her electric wheelchair, and the nurse just turned around to her straightaway and went, 鈥淥h no, no. No you don鈥檛 have to come if you鈥檝e not had sex鈥�. It was that presumption that somebody in a wheelchair wouldn鈥檛 have actually had nookie, which was why she didn鈥檛 need a smear test. But is that technically true?

SAMANTHA-听 Yeah, well that鈥檚 a misunderstanding that we need to address. So, you referred earlier to the research that we did back in 2019, and one of the things that came out strongly there as a theme, and has also been echoed by some of the work that we鈥檝e done with women with learning disabilities, is both being told by healthcare professionals 鈥� obviously not all 鈥� but some healthcare professionals that they don鈥檛 need to go for screening, the assumption being that they aren鈥檛 having sex or in an intimate relationship. Therefore the likelihood of them having HPV is rare, therefore they don鈥檛 need to go for screening. And that is wrong. And certainly one of the recommendations we make in our report is around making sure that anyone involved in healthcare, sample takers for instance, GPs and nurses, understand that women with a disability do need to go for screening and they need to be given the access, the wraparound support to allow them to do that.

NIKKI-听听听听听听听听听听听听 What does your research show?

SAMANTHA-听 One of the biggest barriers, understandably, is GP surgeries not having adequate wheelchair access or lacking disabled parking. And nearly a quarter of the women that we spoke to said that a hoist would have been useful, but only 1% of their GPs actually provided that.

NIKKI-听听听听听听听听听听听听 That鈥檚 a good point actually. I鈥檝e never seen a hoist, I鈥檓 sure there are, but I鈥檝e never seen a hoist in a GP surgery before.

SAMANTHA-听 Yeah. And one of the things that we would look to in these recommendations is that every GP practice reviews their policies and procedures, they make sure that they can make adjustments so that every woman can go for screening. And it might not be that every surgery needs or could afford a hoist, but actually working in a network with others so that they can refer women to a nearby surgery that does have a hoist. But also things like the Care Quality Commission actually policing this and making sure that women are being provided with that care that need locally to be able to go for screening.

And we鈥檙e really keen to see innovations like HPV self-sampling. I don鈥檛 know if any of your listeners have heard of this, but this is where a woman takes a sample themselves using a swab, which they then post off with hopefully no need to even leave their home. Now, this isn鈥檛 actually part of the screening programme at the moment, but certainly at Jo鈥檚 we鈥檙e pressing for a speedy rollout of cell sampling, once it鈥檚 safe to do so. So, it鈥檚 still in sort of pilot phase. And we know that won鈥檛 be the answer for every woman with a disability, but actually as part of a more personalised approach where healthcare providers are saying, actually what do you need to be able to go for screening, we want to try and provide that, is the way forward.

EMMA-听听听听听听听听听听 Nikki, have you had any trouble getting a smear test yourself?

NIKKI-听听听听听听听听听听听听 In all honesty I have. I鈥檝e got a lovely nurse round the corner, and she really is great, but she dreads whenever I book in for a smear because the surgery isn鈥檛 hugely set up. I mean, they don鈥檛 have an adjustable bed, they don鈥檛 have stirrups; and I think stirrups would really, really help me. So, I get on the bed, she tries to shove about a thousand pillows under my butt-butt, and she does her best. But it takes such a long time. The nurse worries because it鈥檚 quite painful. And I am quite hardcore when it comes to pain, I鈥檝e got a good pain threshold, but there鈥檚 something, I think because I鈥檝e had so many bad smears it鈥檚 just an area that has made me go a bit sensitive now. Because I鈥檝e got the endometriosis and I feel like I鈥檝e been prodded enough, so I get a bit sensitive around that area. So, I鈥檓 probably a little bit of a baby as well. But a couple of pillows under the bum is not really going to enable me to get in the best position for the nurse to do her job. And she鈥檚 had so many incompletes 鈥� I think that basically means you do the swab, you send it off, and there鈥檚 enough sample on there. I鈥檓 not a medical professional 鈥� but yeah, I鈥檝e had so many incompletes. And she said to me, I think it was the last one, 鈥淧lease don鈥檛 book in with me again. Go to the hospital鈥�.

EMMA-听听听听听听听听听听 So, what would make a smear test better for you? Does that self-swabbing thing sound like a goer? Could you do that?

NIKKI-听听听听听听听听听听听听 Well, I don鈥檛 know what that involves, Samantha. Is that doing the actual smear yourself or is that a sort of easier way of taking? I mean, I know nothing is definite yet.

EMMA-听听听听听听听听听听 I would imagine you鈥檇 have to stick a long pole with a swab on the end of it up your vagina till it gets鈥� But how do you know when you鈥檝e reached the right spot? My cervix is a bit tilty.

SAMANTHA-听 So, as I said, this isn鈥檛 currently part of the screening programme but when it鈥檚 safe and effective to do so we hope it will be. But no, it鈥檚 not akin to a nurse taking it. It鈥檚 almost like a long cotton wool bud, and they don鈥檛 need to touch the cervix, they just need to get enough cells from the walls to be able to see whether there鈥檚 HPV on it, which is the primary test.

EMMA-听听听听听听听听听听 Like a COVID test but not up your nose.

NIKKI-听听听听听听听听听听听听 It鈥檚 a COVID test for the vagina.

EMMA-听听听听听听听听听听 Yeah, the same kit.

NIKKI-听听听听听听听听听听听听 I mean, finally Samantha, before you go, what would you like to see done to ensure that disabled women can access their cervical smear?

SAMANTHA-听 I think it鈥檚 really important that women鈥檚 voices are heard. And for us there are a few things: as I said previously, that each GP practice tries to take a personalised approach to understand what it is that a woman needs to go for screening and applies that. And that that is then policed by the Care Quality Commission. When it鈥檚 safe and effective to do so, the rollout of HPV cell sampling. And training for all staff to make sure that they really understand and are empathetic about the needs of women with a disability.

NIKKI-听听听听听听听听听听听听 Thank you so much, Samantha. It鈥檚 been great talking to you about this. I think it is such an important one that we need to keep discussing, because it impacts all disabled people, physically, people with learning disabilities, the whole lot. So, thank you for coming on and talking to us on Access All.

SAMANTHA-听 Not at all. Thank you very much.

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NIKKI-听听听听听听听听听听听听 Emma, do you ever get the feeling that someone else could do your job?

EMMA-听听听听听听听听听听 No, no, I don鈥檛 think they could. I mean, they鈥檇 have to be full of Irish banter, and they鈥檇 also have to be a dab hand with the old braille display as well I feel. Why are you asking me this? Why are you opening up all my insecurities about my job?

NIKKI-听听听听听听听听听听听听 I wasn鈥檛 actually talking about another human, Emma. I was talking about a computer.

EMMA-听听听听听听听听听听 Are you talking about some sort of smart techy thing?

NIKKI-听听听听听听听听听听听听 I am, because have you seen the articles this weekend? It鈥檚 about this much-mentioned Chat GPT-4. Apparently it evaded one of those capture tests. Now, they鈥檙e those quizzes you know that they ask you how many traffic cones are in the picture.

EMMA-听听听听听听听听听听 Well, try doing them if you can鈥檛 see, Nicola.

NIKKI-听听听听听听听听听听听听 How do you do them if you can鈥檛 see?

EMMA-听听听听听听听听听听 You get an audio version, which is sort of a load of static with some words popping out, some random words, and you have to listen really carefully and then remember seven words to put into the typing bit. So, anyway, so this Chat GPT-4 thing?

NIKKI-听听听听听听听听听听听听 That article over the weekend, did you see it?

EMMA-听听听听听听听听听听 Yes, I did. I read it in The Sun. And basically Chat GPT-4 hired someone to solve a capture. And the human said, 鈥榃hy do you want me to do this job? You鈥檙e not a robot are you?鈥� And Chat GPT-4 said, 鈥楴o, I鈥檓 not a robot, I鈥檓 visually impaired鈥�. So, it looks like this AI tool pulled out the disability card to get out of doing something.

NIKKI-听听听听听听听听听听听听 So many questions! You know who we need?

EMMA-听听听听听听听听听听 Who do we need? Who are we going to call?

NIKKI-听听听听听听听听听听听听 He鈥檚 one of my favourites. He鈥檚 like the superstar tech reporter. It鈥檚 only Paul Carter from 大象传媒 Click.

PAUL-听听听听听听听听听听听听 Hello.

NIKKI-听听听听听听听听听听听听 Hello Paul.

EMMA-听听听听听听听听听听 Hi.

PAUL-听听听听听听听听听听听听 How are you doing?

NIKKI-听听听听听听听听听听听听 Good. How are you, darling, are you all right?

PAUL-听听听听听听听听听听听听 All the better for being back with you lovely people on here.

EMMA-听听听听听听听听听听 Did you understand any of that, Paul?

PAUL-听听听听听听听听听听听听 I did.

NIKKI-听听听听听听听听听听听听 I鈥檓 going to have to take this slower, right. So, let鈥檚 start off with this question: what is a Chat GPT? Is that the thing that鈥檚 the artificial intelligence?

PAUL-听听听听听听听听听听听听 In a sense, yes. So, basically Chat GPT is a chatbot. And you鈥檒l probably be aware of chatbots if you鈥檝e ever gone onto your mobile phone provider鈥檚 website or a retailer or anything and you鈥檝e needed any sort of customer service, and you get the little thing pop up in the corner and it says, 鈥楬ow can I help you?鈥� and it鈥檚 usually really rubbish, right, and it can鈥檛 find your account information, all of that. Well, Chat GPT is basically one of them but times a million. It鈥檚 got a huge amount of intelligence and resources behind it. I won鈥檛 get too technical, but it鈥檚 based on what鈥檚 called a large language model. It essentially can go and use everything on the internet from 2021 backwards to go and kind of research things and present it to you in a way that makes sense and sounds like it鈥檚 a person.

NIKKI-听听听听听听听听听听听听 Really? It could go back on the internet and get enough information to basically play the disabled card?

PAUL-听听听听听听听听听听听听 Yeah. I mean, it鈥檚 essentially been trained on absolutely vast quantities of information and words and knowledge. I think it鈥檚 important to remember it鈥檚 not alive, it鈥檚 not sentient, it doesn鈥檛 have feelings, it鈥檚 not doing any of this out of spite or malice; it鈥檚 just presenting words in a way that make it sound kind of human. But it does have that ability to kind of learn and understand context.

EMMA-听听听听听听听听听听 And it can do stuff around pictures, can鈥檛 it? I mean, there鈥檚 a new blindy tool coming along called Virtual Volunteer Tool, which is one of those video call, nice sighted volunteer people being kind to blind people and spending a couple of minutes of their day helping me to use my pressure cooker buttons. But this virtual volunteer means you would cut out the person apparently, because you could show it a picture and then it would tell you all the information about the picture; which suggests to me that it鈥檚 not visually impaired at all, Paul.

PAUL-听听听听听听听听听听听听 Well, that鈥檚 the thing; Chat GBT it uses AI, but it鈥檚 only little version of AI. AI can be lots and lots of things, and one of which is image recognition and machine learning, which touches on what you鈥檝e just mentioned there. Look, there鈥檚 a lot being kind of written and said about AI, how it鈥檚 going to steal everyone鈥檚 jobs and it鈥檚 going to be the end of the world and everything else, but I actually think for disabled people in particular it could potentially have some really useful applications. You鈥檝e just touched on one there, Emma.

EMMA-听听听听听听听听听听 Yeah. And are there any other impairments that it could help with make our lives a bit easier? What can it do for Nikki, say? So, Nikki鈥檚 dyslexic; what do you think it could do for her?

PAUL-听听听听听听听听听听听听 Well, I think things like chatbots, like Chat GBT and there鈥檚 also Bard as well, which is Google鈥檚 version, because they are so good with language and language processing 鈥� that鈥檚 kind of what they鈥檙e built on really 鈥� anything that affects people鈥檚 ability to use language effectively or efficiently can be improved by this. Because you can essentially go to Chat GBT and say, 鈥楾his is all the information about me, can you write me a CV?鈥� and it will be able to do that. Even for people with learning difficulties being able to break stuff down and rewritten in a more kind of understandable and digestible way, these are all applications that it could have. But it needs someone to take them on and actually develop them and make them happen.

NIKKI-听听听听听听听听听听听听 You see, that would have changed my life at school that. I always think now if I鈥檇 gone through school not in the 1980s and 1990s I would have done better because I have kind of learnt a lot as I鈥檝e got older and it has been down to computers. We鈥檙e responsible journalists, aren鈥檛 we, Ems?

EMMA-听听听听听听听听听听 We are.

NIKKI-听听听听听听听听听听听听 We wanted to give Chat GBT-4 its chance to explain itself. It鈥檚 like it鈥檚 very own right of reply. So, we reached out and we sent it a couple of questions.

EMMA-听听听听听听听听听听 Right, so we asked: why did Chat GBT-4 pretend to be blind to avoid answering a question about images? And it said:

CHATBOT-听听听听 I apologise if there was any confusion or miscommunication, but as an AI language model I do not have the ability to see or perceive images in the same way as humans do, therefore I cannot provide visual descriptions or interpretations of images. If you have any questions or concerns please feel free to ask me, and I will do my best to provide a helpful response.

EMMA-听听听听听听听听听听 Why did it say that, Paul, do you think?

PAUL-听听听听听听听听听听听听 It needed to give a reason to get the person to do what he was asking. And I would imagine that, 鈥榃ell I can鈥檛 see the capture鈥� was probably the most common reason why people aren鈥檛 able to do captures. So, I suspect that that鈥檚 why it went down that path.

EMMA-听听听听听听听听听听 So, it just pulled out the easiest reason. So, when I鈥檓 asked to do a capture, how many traffic lights are in this grid, just below that it鈥檒l say, if you鈥檙e visually impaired here鈥檚 an audio version. So, that is the most common reason why you wouldn鈥檛 be able to do the capture is because you can鈥檛 see it. So, the chatbot wasn鈥檛 being that clever; it just looked on capture sites, saw that there were audio versions and that they were for blind people and said, 鈥業 can鈥檛 do the visual version because I鈥檓 visually impaired鈥�. So, that kind of makes sense, doesn鈥檛 it?

PAUL-听听听听听听听听听听听听 Yeah, it鈥檚 exactly that. At the end of the day a chatbot doesn鈥檛 have any more capacity to understand what being sneaky is than a fork has to understand what it is to be hungry.

NIKKI-听听听听听听听听听听听听 I think it was doing what I used to do back in 1995 onwards, and just try and get out of something by saying, 鈥業 can鈥檛, I鈥檓 disabled鈥�.

PAUL-听听听听听听听听听听听听 [Laughs]

EMMA-听听听听听听听听听听 Paul, could Chat GBT actually be a disability ally?

PAUL-听听听听听听听听听听听听 I think it could be. I mean, as with all these things, there鈥檚 never any kind of really clearcut answer. But I think it really has the potential to be, if it鈥檚 used in the right way, and it鈥檚 developed in the right way, and applications for the tech are developed with disabled people, as we always say, and it鈥檚 used in a way that doesn鈥檛 exclude us. So, I think it really has the potential to be an ally, but it is that word potential. It鈥檚 one of those things that won鈥檛 ever properly catch on until people actually find an application for it. It鈥檚 an amazing solution without a problem at the moment, and I think that鈥檚 what the next stage is.

NIKKI-听听听听听听听听听听听听 You see, I still don鈥檛 know whether I鈥檓 impressed or absolutely terrified.

PAUL-听听听听听听听听听听听听 I mean, it sounds more accessible than a lot of physical venues I鈥檝e been into.

NIKKI-听听听听听听听听听听听听 It really does, doesn鈥檛 it? You鈥檙e not wrong. You are not wrong.

MUSIC-听听听听听听听听听听 Access All.

NIKKI-听听听听听听听听听听听听 Now, do you remember the phenomenon that was The Queen鈥檚 Gambit?

CLIP-听听听听听听听听听听听听听听 I want to know what that is you鈥檙e playing.

NIKKI-听听听听听听听听听听听听 During lockdown I rinsed the lot of them. It was a story all about chess. Well, this is amazing, our next guest has combined chess, romance and 鈥� and I never thought I鈥檇 say this 鈥� arthritis, to create one of the hottest young adult debut novels, set to hit the bookshops soon. And it鈥檚 called The First Move. I鈥檓 so excited to say this, welcome to Access All, it鈥檚 Jenny Ireland. Hello Jenny.

JENNY-听听听听听听听听听听 Hi, thank you so much for having me. I鈥檓 so excited.

NIKKI-听听听听听听听听听听听听 Oh, it鈥檚 brilliant, chess, romance and arthritis, honestly it鈥檚 a killer, you鈥檝e got me hooked immediately. Now, your book is out next week, isn鈥檛 it? How are you feeling about it all?

JENNY-听听听听听听听听听听 I am really excited, but I鈥檓 also really nervous. I didn鈥檛 expect to be this nervous, but there we go.

NIKKI-听听听听听听听听听听听听 What is it you鈥檙e nervous about? Is it just audience reaction? I guess there鈥檚 probably lots of things.

JENNY-听听听听听听听听听听 I鈥檓 also excited, so that鈥檚 a good thing.

NIKKI-听听听听听听听听听听听听 Now, I teased the audience there, didn鈥檛 I, by saying that the book combines chess, romance and arthritis. So, why don鈥檛 you tell us a bit more about the book? Make that make sense.

JENNY-听听听听听听听听听听 The First Move is a teen romance, and it follows two protagonists, Juliet and Ronan. Juliet lives with inflammatory arthritis and is very cynical about love. Ronan has a huge secret that he cannot deal with, never mind talk about. And they both use playing chess online anonymously as a means of escapism, which eventually spills over into real life.

NIKKI-听听听听听听听听听听听听 Because they don鈥檛 know that they鈥檝e actually made contact with each other, do they?

JENNY-听听听听听听听听听听 No, no. So, they have this whole relationship online, so like getting to know each other, and they have no idea. And then they go to the same school.

NIKKI-听听听听听听听听听听听听 I鈥檓 a sucker for a romance.

EMMA-听听听听听听听听听听 It鈥檚 a bit like Dash & Lily. Have you ever seen Dash & Lily?

NIKKI-听听听听听听听听听听听听 No.

EMMA-听听听听听听听听听听 It was a Netflix thing a couple of Christmases ago about two听 young people who meet online. I mean, it鈥檚 not at all like that, but it鈥檚 got that kind of exciting suspense and cuteness and struggles. I love it.

NIKKI-听听听听听听听听听听听听 I love it too. Now, for the audience that don鈥檛 know, Jenny, you鈥檝e dealt with a lot of medical stuff yourself, haven鈥檛 you? First arthritis and then encephalitis.

JENNY-听听听听听听听听听听 Yes.

NIKKI-听听听听听听听听听听听听 Obviously the leading lady in your book, Juliet as you mentioned, also has arthritis. She has it as a teenager. And you were diagnosed in your early 20s, weren鈥檛 you? What were the first signs for you?

JENNY-听听听听听听听听听听 The first real signs were swellings in my knees. My knees will fill up with a lot of fluid. And looking back I had other signs, like pain in my neck and things like that. So, it wasn鈥檛 until I was home from university and the worst couple of years, and then it was back and forth to the doctors to try and get a diagnosis.

NIKKI-听听听听听听听听听听听听 The character, Juliet, in the book struggles, doesn鈥檛 she, to come to terms with having the condition. Was that the same for you or were you pretty okay? Because there is an age difference there obviously.

JENNY-听听听听听听听听听听 My dad was a doctor, he鈥檚 retired now, so it wasn鈥檛 a huge shock when I got diagnosed. I think the word must have been thrown about a few times, so it wasn鈥檛. And I had a really good support network, and it just wasn鈥檛 a huge shock. But it was actually after all the brain surgery and things like that I thought as a teenager having these things must be horrific. And you鈥檙e so self-conscious, and really what would these things be like to have as a teenager.

EMMA-听听听听听听听听听听 Yeah, and actually what鈥檚 interesting is that鈥檚 what really touched nerves with me was that teenage disabledness, the being left out of stuff, either consciously or subconsciously, and the difference in your parents鈥� life because you鈥檙e disabled. I felt like you really hit the nail on the head there, so I was very surprised to hear that you were diagnosed in your 20s and it wasn鈥檛 your story and your feelings and everything.

JENNY-听听听听听听听听听听 It was more that I was so self-conscious as a teenager, just as most teenagers are, so it was just adding that in. I think any teenager who goes into school with something extra, anything extra, is a hero, because it鈥檚 so difficult as it is, never mind adding disability or anything onto that.

NIKKI-听听听听听听听听听听听听 I always say to Emma, and she鈥檚 like, 鈥淒on鈥檛 Nikki, don鈥檛, enough of the hair鈥� but I was like this little Weeble that used to wobble around school trying not to fall over. Incredibly hairy at the same time, crooked teeth and well, acne, it was quite horrific. I deserve听 a medal Jenny quite honestly.

JENNY-听听听听听听听听听听 It鈥檚 so difficult being a teenager. And I still have all these feelings from being a teenager, just like heartbreak and self-conscious everything. It鈥檚 so much harder with anything else.

NIKKI-听听听听听听听听听听听听 How did you get into the writing then. How did this all happen?

JENNY-听听听听听听听听听听 I didn鈥檛 write until I had kids. It was actually after my son was born, my second child. And I think I went mad from my sleep deprivation, and I was like, I鈥檓 going to write a story, I鈥檓 just going to write a story. And then I loved it, I absolutely loved it and got completely hooked.

NIKKI-听听听听听听听听听听听听 I love that. Mind you, you鈥檝e had two kids, you鈥檝e already got quite a lot on your plate and that鈥檚 when you start writing. And I wonder how you balance that, because obviously I was reading you do have to deal with fatigue, don鈥檛 you, and you like an early night, which I love an early night. A blanket and a hot water bottle early night, hello.

JENNY-听听听听听听听听听听 Oh yeah.

NIKKI-听听听听听听听听听听听听 But how do you balance all of that with the writing, with the kids, with the stuff that you also have to manage?

JENNY-听听听听听听听听听听 Well, when I鈥檓 writing I get up really early. I鈥檒l get up at five and I鈥檒l just write for two hours in bed. I鈥檝e always been a morning person so it really works for me, and it works round the kids. Then by about 7 o鈥檆lock my brain doesn鈥檛 work anymore so I鈥檓 just watching whatever on TV. But I get all my writing done.

EMMA-听听听听听听听听听听 That鈥檚 so organised. You mentioned having two children; how did your body react to that? Because I know arthritis changes depending on lots of different factors.

JENNY-听听听听听听听听听听 Yeah, well when I was pregnant I basically felt no pain at all. It was like a weird miracle cure. And then sort of six weeks after the birth it was a huge flare-up, just like I鈥檓 back.

EMMA-听听听听听听听听听听 That鈥檚 so interesting. That鈥檚 fascinating.

JENNY-听听听听听听听听听听 I mean, it must be something to do with hormones, I don鈥檛 know. But I think it happens for quite a lot of people, so there is something. I don鈥檛 know.

EMMA-听听听听听听听听听听 So, hang on a second, let me get this straight, you were at home with your kids in a pandemic writing what鈥檚 going to be a bestseller?

NIKKI-听听听听听听听听听听听听 Yeah.

JENNY-听听听听听听听听听听 Let鈥檚 hope. It鈥檚 a teen romance anyway.

NIKKI-听听听听听听听听听听听听 Would it be a good time though for you to read a little excerpt of the book, to give our listeners a kind of tease to what they鈥檝e got in store?

JENNY-听听听听听听听听听听 Yeah.

NIKKI-听听听听听听听听听听听听 Go on, Jenny.

JENNY-听听听听听听听听听听 [Reading] There should be a disclaimer at the beginning of teen movies: content warning, real life is nothing like this. We accept no liability whatsoever for the unrealistic expectations that will arise from watching this film. Your discretion is advised. Seems fair. People should be warned that the whole guy meets girl, they hate each other, or pretend to, get forced together and bang, they fall in love thing is total [muffled]. And yeah, I know it鈥檚 fiction, but none of this stuff is real, but I still get sucked in every single time. I even get butterflies when they stare at each other the way I stare at my hot water bottle and painkillers after a day of too much standing up. Real life is the doctor handing you two disgusting grey crutches and telling you that you鈥檒l need to use a walking aid for the foreseeable future. Real life is staring at yourself in the mirror and trying not to despise your new reflection.

NIKKI-听听听听听听听听听听听听 That was amazing.

EMMA-听听听听听听听听听听 Yay.

NIKKI-听听听听听听听听听听听听 Oh, that was brilliant, Jenny. And your voice as well, you鈥檝e got such a beautiful accent.

JENNY-听听听听听听听听听听 Oh, thank you.

EMMA-听听听听听听听听听听 Was this your first disabled character, Jenny?

JENNY-听听听听听听听听听听 It is actually, yeah. I didn鈥檛 set out to write a disability book or a disabled book. It鈥檚 just a love story and she just happens to have arthritis.

NIKKI-听听听听听听听听听听听听 I love this.

JENNY-听听听听听听听听听听 That鈥檚 the way it should be.

NIKKI-听听听听听听听听听听听听 Thank you so much for listening today. It鈥檚 been a right good podcast. Well, we鈥檙e going to be back next week, but if you want to get in touch before then, email us on accessall@bbc.co.uk. Or you can find us on Twitter.

EMMA-听听听听听听听听听听 You can also leave us a voice note on this number, it鈥檚 0330 123 9480. You can also subscribe to us, please subscribe and tell everyone else you know to subscribe, on 大象传媒 Sounds or wherever you get your podcasts from.

JENNY-听听听听听听听听听听 Have a lovely Easter, if that鈥檚 what you're doing. I鈥檝e just been told I鈥檝e got a chocolate cow to eat, not a bunny. Goodbye everyone.

EMMA-听听听听听听听听听听 Bye.

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