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NIKKI- Now, I’m very lucky, I’m going to go on a little summer break in Portugal. But it is actually taking longer, for disability reasons. We got this lovely villa in the middle of nowhere, but we found out that an accessible taxi or an accessible car to hire would have cost us around 2,500 euros a week. 

EMMA- Wow, that is a lot of money.

NIKKI- Yeah, on top of the holiday itself. And a lot of disabled people will know this, you factor in the fact that my holiday insurance is going to cost me 200 quid more than my fella’s. Expensive.

EMMA- Yeah. So, how are you getting there?

NIKKI- Ferry.

EMMA- Are you going to slip into that aisle chair and shimmy down the aisle?

NIKKI- I am avoiding flying. 

EMMA- Have somebody lift you up and pop you down for the whole journey in the same seat. 

NIKKI- We’re getting the ferry. But I’m trying to get organised for the holiday because there’s so much to do and so little time. Do you prep in advance, Em, when you go away?

EMMA- Packing and stuff I’m afraid happens the night before with me. 

NIKKI- The night before?

EMMA- Yeah.

NIKKI- The night before!

EMMA- It’s just as the washing gets cleaned it goes into the case. Isn’t that what you do?

NIKKI- No. I’m not going away for a couple of weeks, I’m already starting. 

EMMA- Wow.

NIKKI- Getting all the dresses out, getting the bikinis out. What’s really nice is that we’re going to have a swimming pool. So, you know me and swimming, very good for the old muscular dystrophy.

EMMA- Yes.

NIKKI- So, I’m going to do it every day. But I have also been bleaching my hair since around 15, so the hair does go green. So, I have had to pack six bottles of a hair cream that you whack on your hair to protect your hair. And then I’ve had to buy like a Smurf hat, because I’ve got a big head and a lot of hair. So, I’m going to look a right honey when I get in that pool. My boyfriend’s going to be like, twit, twoo. I have just been told in my ear, Emma, that Smurfs they actually wear white hats, not blue hats. I was obviously getting confused. 

EMMA- Because Smurfs are themselves blue.

NIKKI- Yeah. I didn’t come up with the name, I just got called it a lot. 

EMMA- By somebody who doesn’t know the Smurfs very well.

MUSIC- Theme music. 

NIKKI- This is Access All, the ³ÉÈË¿ìÊÖ’s disability and mental health podcast. I’m Nikki Fox and I’m in London. 

EMMA- And I’m Emma Tracey and I’m in Edinburgh.

NIKKI- Today we’ve got screenwriter, Jack Thorne. He’s joining us soon to talk about his new ³ÉÈË¿ìÊÖ drama series. It’s called Best Interests and oh my goodness, it is emotional. 

EMMA- And we’ll be revisiting last week’s story about roadside assistance when your car breaks down. 

NIKKI- So, if you like the sound of all of that then please do subscribe to Access All on ³ÉÈË¿ìÊÖ Sounds or wherever you get your podcasts. And if you can tell a friend. 

EMMA- Nikki?

NIKKI- Yes, Emma Tracey?

EMMA- Do you have a special affinity with mermaids?

NIKKI- Mermaids?

EMMA- Yeah. They don’t walk. 

NIKKI- Well, I was just about to say I love swimming. But you went straight in there with the old disability [laughs]. 

EMMA- The live action version of The Little Mermaid from Disney has just been released. And disabled people are talking about what it means to them on my timelines. Disabled people can identify with the swimming, as you said. Charlotte, who’s got cerebral palsy, it’s her favourite movie of all time, and she says she can identify with the kind of parents worrying about their children. So, the King, who’s Ariel’s dad, doesn’t want her to mix with the humans because he thinks it’s dangerous and he thinks she will get into trouble. 

It feels like you feel like I’m clutching at straws here. And I’m beginning to now doubt myself.

NIKKI- No, don’t. Look, no Emma, because I suppose in a way where I would find this is that she wants to be part of that human world, doesn’t she, but she’s got no way of moving around. I kind of get that. 

EMMA- Yeah, and she’s sort of outside of it but inside of it, looking in at it, looking at all these people doing all these things that she would like to do but either she can’t physically do or she’s not being allowed to do.

NIKKI- Yes.

EMMA- And we all know that. We all know that feeling at the edge of a party, at the edge of a classroom, at the edge of a playground.

NIKKI- We can’t speak for all disabled people though. 

EMMA- No. I mean me. I mean me [laughter]. Now, you do have a tweet. I’ve written a tweet down for you on the script that will back me up here that there is a disability element to this film.

NIKKI- US activist, Imani Barbarin tweeted, I’m going to lose it upon seeing The Little Mermaid, as a disabled black woman I still maintain that part of your world is an unofficial disability ballad. 

EMMA- There you go, strong stuff. 

NIKKI- I guess it’s everyone that feels like they don’t fit in. That’s as far as I’m going to go with this, Ems.

So, on last week’s podcast we were joined by Sophie Smart. Now, Sophie is the mum of Karson who is a wheelchair user and has additional medical needs. Now, Sophie and her husband and her young son were coming back from Alton Towers where they were celebrating Karson’s eighth birthday and they broke down. Now, not only did they have to carry Karson out of the car and across the motorway – which just sends shivers down my spine – they were left at the side of the road for seven hours. They called RAC straightaway but nobody came to them. 

[Clip]

SOPHIE- Yeah, we were on call to Motability all of the time, then onto RAC. We called the National Highway several times, I think four or five times, we called those. And we also called the police.

[End of clip]

NIKKI- And actually their friends had to come and pick them up in the middle of the night. Now, the RAC, as many of you will know, is the callout service you have as part of your Motability package. And Motability of course is the scheme where many disabled people who struggle to get around can use part of their disability benefit towards the car. Now, lots of disabled car owners got in touch with us, didn’t they Emma, with similar experiences to Sophie. 

EMMA- They did. We had a lot of feedback on this to be honest. Nicola wrote to us to tell us that her Motability car broke down last week at 11pm at night time and the RAC never attended. But she did say that other help arrived. Nicola writes, ‘I cannot thank the individuals from Highway Patrol enough for their kindness, comfort and help’. So, the Highway Patrol of course are the government agency that looks after the motorways. Nicola tells us that her daughter was with her and she has medical needs, and there were two cats and a dog in the car as well. So, Nicola completed the survey that she got by text from the RAC after, and they responded with an apology and offered a goodwill gesture. And you’ll remember that the RAC also offered Sophie a goodwill gesture in apology for what happened to her and her family.

NIKKI- Now Ian also got in touch with us. He’s a disabled driver. He says he waited nine hours on a country lane in March – oh, on a country lane, oh my goodness – only to be told he’d have to arrange his own recovery vehicle as the RAC couldn’t get to him. Now, importantly Ian isn’t a Motability customer. He has a Blue Badge and so therefore he’s got Blue Badge priority. So, what is Blue Badge priority, Emma?

EMMA- Right, so the RAC has a special package for Blue Badge holders, so you can take up that package. As long as you’re a Blue Badge holder they will talk to you when you ring them up and they’ll find out your position, they’ll find out your needs, and they’ll make sure they prioritise you where appropriate. And the difference is if you’re a Motability scheme car driver you actually get answered by a specific handler who looks after the contract between RAC and Motability so they know, before they answer the phone, that you’re a Motability customer. 

NIKKI- See, I did not know about this Blue Badge priority, Emma. As I did not know about that SOS button that we spoke about last week.

EMMA- No, you didn’t. Did you go straight out? Graham told us about this; Graham from Disabled Motorists UK told us about this button that all cars after 2019 have apparently, where you can ring the emergency services. 

NIKKI- Yeah.

EMMA- So, did you find your button, so to speak?

NIKKI- I did. I found it. And I realised that if I was on my own my arms wouldn’t be strong enough to reach it. 

EMMA- So, where was it? 

NIKKI- It’s on the roof of the car.

EMMA- No!

NIKKI- Yeah. 

EMMA- On the roof?!

NIKKI- Not the roof, I mean not where you put the roof rack, actually inside the car on the ceiling. 

EMMA- Inside on the ceiling? 

NIKKI- Yeah. it’s a bright red button, it’s got SOS. It’s not the biggest button in the world, but it’s the first time I’ve ever noticed it. But I would need a bit of a stick to prod it if I needed to call that button if I was on my own. 

EMMA- Well, lots of people need sticks to prod buttons, do you know. 

NIKKI- Don’t they just, Emma, don’t they just. 

EMMA- It’s not unusual. And I’m sure somebody, we know the disability product landscape, I bet you there’s somebody selling somewhere an SOS button poker. 

NIKKI- Oh please, please, that would be great. 

EMMA- But it’s going to cost 250 quid.

NIKKI- Can you not just give us one of your white canes?

EMMA- Someone’s going to have an Etsy shop. There’s going to be all sorts of different designs for all sorts of different car heights. 

NIKKI- Yeah.

EMMA- I could give you one of my canes but that would be too long, wouldn’t it?

NIKKI- Don’t they fold down, I thought you told me the other day?

EMMA- Oh yeah, they do. But then they wouldn’t be as accurate as there would be kind of a wider top to them. I don’t know. 

NIKKI- That’s fine. In an emergency you just smash it, don’t you? [Laughs]

EMMA- Well, in an emergency what would you do? So, if it happened to you tomorrow how would you get to the button? 

NIKKI- I don’t know. I don’t think I’d get to that button. 

EMMA- Are you going to have to get a new car now? I know, you could get a pull cord.

NIKKI- Very excited. Oh, yeah. But aren’t they annoying in hotels though? Because I always pull that thing without wanting to. 

EMMA- I do it as well. I’ve done it before.

NIKKI- It’s really bad. It’s never in the right place.

EMMA- A bit awkward, yeah. 

NIKKI- And I guarantee when I’m driving I’d pull that cord. 

EMMA- When you pull the cord accidentally do people come running? 

NIKKI- Yeah. Not always though, and I think come on, hurry up love.

EMMA- Are you on the loo and they’re like banging on the door?

NIKKI- Yeah, yeah. 

EMMA- That’s embarrassing. 

NIKKI- Yeah, I know. Tell me about it. 

EMMA- Anyway.

NIKKI- Moving on. 

EMMA- That’s just a flavour of the feedback we got by the way. We got loads, and we will be coming back to this.

NIKKI- And please, if you have any experiences, I hope you don’t, but if you do tell us about them, or anything else for that matter. You can find us on Twitter or you can email us on accessall@bbc.co.uk.

Next week a new ³ÉÈË¿ìÊÖ drama hits our screens, Best Interests follows the struggles facing a family who are told it’s in the best interests of their young disabled daughter, Marnie, to stop her treatment and allow her to die following a serious infection. And so begins a legal battle between Marnie’s parents and doctors. Now, we’re very excited to say the writer behind the four-episode drama is Jack Thorne. And he’s only with us now. Hello Jack.

JACK- Hello. How are you? 

NIKKI- We’re very excited about this, Jack. But first, let’s hear a clip before we get chatting. This is Marnie’s parents talking together about what the doctors have proposed:

[CLIP]

DAD- I think we should consider it, consider ending it, the treatment – for her sake. We knew right from the start there was going to come a point when…

MUM- Yeah.

DAD- …we’d have to decide.

MUM- Yeah, we did. But this is not that point.

DAD- But the doctors are advising…

MUM- Two months ago she was smiling, she was looking out of her bedroom window at the birds. We were there, okay. The robin was back and she was delighted. 

DAD- And that was two months ago, you know. She’s brain damaged. She’s having bloody seizures!

MUM- It’s not always going to be like that!

[End of clip]

NIKKI- Oh, it’s such an emotional watch.

JACK- I suppose the thing for me was trying to tell a complicated story about disability and parents of a disabled child. But also it tells a story about disability now and where we’re at and how we are post-pandemic, and what the pandemic did, and the scars the pandemic left. 

NIKKI- You raise so many important points about health inequalities, about unconscious bias, about the pandemic and what everyone went through. Was that your intention when you started out writing it?

JACK- Yes, though I started writing it before the pandemic. But certainly those questions came much more sharply into my head, when Liz Carr said to me that she was thinking of changing her name to Underlying Health Condition, because that’s how she felt like she was being treated. The whole notion of dividing deaths in was just an extraordinary thing and I think it is something that has seeped into our society. And TV can and should challenge. And hopefully this drama does challenge it a bit.

NIKKI- Because that time there was just so much that was going on when it came to disabled people and how they felt at the time, if it was not being able to get online shopping, or the worry what if I go into hospital and I’m not going to be given a ventilator. I think what’s great about your drama is you’re telling an audience that might not have kind of understood that time and what it was like for disabled people, they’re going to understand it through your drama. Your main character in it, Marnie, she has congenital muscular dystrophy, which is exactly what I’ve got. I was a bit like, ooh. But obviously she has a different very kind of rare condition which is life-limiting. What kind of research did you have to do?

JACK- We did an awful lot of research. And actually one of the biggest piece of research right in the beginning was finding the right condition. And we had to find a condition that met the story arc, did everything that we needed it to do, but one that hadn’t a case in the courts because we didn’t want any parent feeling like we were telling their story, any child feel that we were telling their story, and one that would behave in the way that we wanted it to behave. And then we had various different doctors and advisors just telling us exactly how to present it as we went through it. 

We took it very, very seriously, and I hope we present it with accuracy.

NIKKI- The young woman that plays Marnie, amazing. The rest of the cast you’ve got Michael Sheen, you’ve got Sharon Horgan. I normally see her in comedy roles so it was lovely to see her in something like this. But she’s still got that twinkle. 

JACK- Yeah, she’s an amazing actress. 

NIKKI- And Matt Fraser pops up. The cast is incredible. 

JACK- Lenny Rush. 

NIKKI- Yes. 

EMMA- Yes!

JACK- The immortal Lenny Rush.

NIKKI- The guy from Am I Being Unreasonable?

JACK- I’ve been lucky enough to be part of the Christmas Carol at the Old Vic, and so Lenny was one of our first Tiny Tim’s and he stayed in the role as Tiny Tim for a long time through it. And Niamh Moriarty, who plays Marnie, was a Tiny Tim in Dublin. So, that’s really nice just seeing them grow up. When Mattie asked me to write Christmas Carol I said I only have one condition, which is that Tiny Tim be played by a disabled actor. And he said okay. And it was a hard process because they needed four young actors that were able to be in London and do the role. And now those actors that were young when they were playing Tiny Tim are starting to have professional careers, and it's just really exciting to see them all grow and change. 

EMMA- What a picture! You’ve basically created an incomparable theatre school for disabled kids. They’re going to grow up and take over the world. 

JACK- Lenny already has taken over the world I think, if the past is anything to go by in terms of just killing it at the BAFTAs. 

EMMA- Oh, the speech. 

[Clip]

LENNY- What?! [Laughter] I just want to say I’m so happy. I can’t believe I won along so many other great nominees. Thank you. 

[End of clip]

NIKKI- Do you worry, because I know a lot of people in this industry do think okay, they’re going to have their moment and then that moment is going to go, because it is a difficult industry if you’re disabled, do you worry about that now or do you think things are getting better? 

JACK- I think things are getting a lot better, and I think people are able to sustain careers. And if you look at Ruth Madeley, who I worked with on Don’t Take My Baby, in 2016, and she stayed working for a while but then she started getting more and more parts and now she’s a lead actor in projects, and she’s fantastic. And I think the TV access project we’re really starting to get somewhere I think with accessibility being baked in. 

EMMA- So, accessibility is starting to be baked into productions? 

JACK- Yeah, exactly. And people are really taking it seriously. It’s remarkable what’s happening. Is it enough? Not yet. 

NIKKI- So, do you feel like things have moved forward from your 2021 MacTaggart lecture? You were very, very strong about the frustrations that you felt with the industry. 

JACK- I think things have moved on markedly since then. I am very excited. It’s slow, but I’m seeing in the writing world – and I don’t think any of them have been announced yet – but I know that there are projects in the pipeline that are about to happen that you’re going to see disabled writers coming to the fore, and the change that will make will be huge.

NIKKI- You are passionate about all of this, aren’t you. And you’re so up on everything disability. You also revealed, when did you reveal it actually, that you were autistic. When did that come about, Jack?

JACK- December I think. I did Desert Island Discs and someone wrote to my agent afterwards going, I think Jack is autistic. So, I phoned my agent and said, ‘Do you think there’s any truth to it?’ and she said, ‘Well yes’. And I was like, ‘Really?!’ and she was like, ‘Yes’. And then I went downstairs to my wife and went, ‘Do you think there’s any truth to this?’ and she was like, ‘Yes, yeah’ [laughter]. And so I started pursuing it. It took a while but eventually yeah, I got this diagnosis. And it’s made sense for a lot of things for me. I’m still trying to figure out exactly what it means for my life, and I’m trying to stop it being an excuse for me to hide, which is my tendency. It’s had a positive impact on me generally. 

NIKKI- What was it you think your family and friends noticed in you to say yes straightaway?

JACK- I think it’s probably in lots of little things. The thing that became apparent to me, that they talk a lot about women being diagnosed as autistic very late on because women become very good at masking, and I think I was very good at masking. And I think it’s probably helped my writing actually because I think I was constantly looking at other people for how they worked in order so that I could present something that worked as a version of me. I’m a very happy person now. I think it probably did leave me quite unhappy for a long time, particularly through childhood and in my 20s. I’m in a good place now.

EMMA- You talked about masking, which is where autistic people look at what other people are doing and do that. And you said you looked at other people to see how they worked. But I’d imagine none of them have worked as hard as you and written as many successful things as you. Here’s just a list of some of the things that Jack has been involved with: 

Written the stage play, Harry Potter and the Cursed Child; the film Enola Holmes; the television programme, His Dark Materials; he’s been involved in writing Skins, Shameless and This is England; co-wrote Then Barbara Met Alan – amazing, and Please Don’t Take My Baby – amazing. We’ve had quite a few autistic people over the past year on Access All and lots of them talk about their ability to hyperfocus. Do you think that’s part of what makes you so prolific? Or if not what’s your secret? 

JACK- When I got diagnosed the first thing I said was, ‘Where am I on the spectrum?’ and the doctor said, ‘We don’t believe in that anymore’. And I sort of feel like that about it. And that’s part of I think my journey with it, which is just kind of like I don’t quite know what it has made me and I don’t quite know what it will make me. And so things like hyperfocus I just worry about it a bit as a sort of definition. 

I like writing, I find great pleasure in writing. My wife used to, whenever I was in a mess, she just used to say, ‘Go away and write, and then you’ll come down a human again’. I think that that has been my saving grace really through my life is the ability to be able to write and find comfort in creating situations where I can understand situations better. I don’t know whether it’s hyperfocus or whatever, but I think it’s that I take great pleasure in understanding. And I think that the thing that exhausts me, if I have to spend a day on set I come home and I am totally exhausted; if I have to spend 14 hours writing I’m not exhausted at all. I’m a bit tired but I’m not really exhausted at all. It’s the navigating through how to be the person that people want me to be in those situations that I find really, really tough. I just find writing very soothing since I was a kid. So, I think it’s just I love it. 

NIKKI- Well, we could talk to you for absolutely ages. But what’s next for you?

JACK- Just writing. I don’t think I’ve got any projects that I can announce or talk about. I’m doing a play; that’s making me happy. 

NIKKI- Is that the Sam Mendes one?

JACK- Yes, that’s on now at The National. And I’m doing a new play at the Donmar as we speak. It opens next week. I’m just trying to keep writing, keep working. I’m writing Lord of the Flies, that’s exciting. 

NIKKI- Jack, you’re an ambassador for the ³ÉÈË¿ìÊÖ’s Writers’ Access Group, aren’t you? And that supports disabled scriptwriters. Is scriptwriting as important as seeing a disabled actor on the screen, do you think? 

JACK- I would say authorship comes in many, many different forms. And I think actors are authors. And I think having authors on screen so people can see them are really important. I think writers in getting things right, and I think disabled writers get disabled stories right. I think it’s really important to have someone doing hair and make-up who’s disabled. It’s finding everyone through the industry, but what is definitely true is there’s been a drought where disabled writers have been concerned in terms of getting disabled voices on the screen. So, I love the Writers’ Access Group and I hope it’s the start of seeing much, much more disabled writers writing for television. 

NIKKI- Em, why don’t you do the fun one? 

EMMA- I’m going to do the fun one, which you won’t want to answer. Are you ready?

JACK- Go on, hit me. 

EMMA- You’ve got 11 Baftas and 12 RTS awards. Where do you keep them all? Do you have a massive bathroom? 

JACK- I do not have 11 bathrooms!

EMMA- Oh. Anyway, where do you keep all those many awards you’ve won, Jack?

JACK- I have to confess, I do keep them out. And they’re in the telly room. I’m not cool enough to hide them away. And I wouldn’t have them in my office because then they’d be winking at me and making me feel [beeps] about myself. 

NIKKI- [Laughs]

EMMA- That difficult 35th drama or whatever. 

NIKKI- The pressure.

JACK- Yeah [laughs]. But I have them in the TV room where occasionally I look at them and go, okay, what’s next. 

EMMA- So, how many do you have then?

JACK- I have five. 

NIKKI- Oh. 

EMMA- That’s still amazing by the way. 

JACK- I know. I’m very happy.

NIKKI- Just quickly remind us of when and where we can watch Best Interests? 

JACK- So, Best Interests is on ³ÉÈË¿ìÊÖ One from 9 o’clock from Monday the 12th, and it’s also on iPlayer at exactly the same time. 

NIKKI- And it’s amazing. Thank you so much Jack.

JACK- Thank you. 

EMMA- Thank you. 

JACK- Awesome. Lovely talking to you. 

NIKKI- The Cystic Fibrosis Trust has found one in five people with the life-limiting condition ran out of food over the last year due to the cost of living crisis. Now, we know that this is a particular subject that affects a lot of our listeners. 

EMMA- The figures are from a new report which reveals the risks this poses to the health of people with cystic fibrosis, with one in three having to borrow money for basic essentials like food, clothing, heating and internet. 7% of those surveyed needed to use a food bank in the last year, which is more than double the UK average. 

NIKKI- Two people who have joined us today know a lot more about it than we do. Welcome Holly. Holly’s two year old daughter, Amelia, has CF, cystic fibrosis. And Ben Kind, head of policy and public affairs, is from the Cystic Fibrosis Trust. Lovely to meet you guys.

HOLLY- Thank you for inviting me. 

BEN- Thanks for inviting me on, Nikki.

NIKKI- Holly, can you tell me a little bit about Amelia? What’s she like?

HOLLY- She’s a whirlwind. But she is your typical toddler. We are two and a half years [laughs] into Amelia. She’s just fun. She’s a bundle of energy, honestly. And to look at her she looks exactly like any other toddler. And I think that’s half the battle sometimes is that people don’t understand that there’s things going on internally. She’s a lovable whirlwind [laughs].

NIKKI- Oh, I love that. Well, firstly can we start with the basics, Ben? What exactly is cystic fibrosis, for people that don’t know?

BEN- So, cystic fibrosis is one of the most common genetic conditions in the UK. It’s an incurable, life-limiting genetic condition that affects around 11,000 people across the country. People with CF experience a build-up of a thick sticky mucus in their lungs, in their digestive system and in other organs, and this causes a wide range of challenging symptoms that affect the whole body. People with CF have to take around 40 pills a day if they’re on some of the medications, and they undergo hours of gruelling physiotherapy. And if they can catch a bug they can end up in hospital. The bottom line is you’re born with CF, you can’t catch it later in life, but one in 25 of us carry that faulty gene and this causes the cystic fibrosis. Often people don’t know about it, but if both parents have that faulty gene there’s a one in four chance of having a baby with CF. 

NIKKI- You spoke about symptoms, what are they, Ben?

BEN- It can be a bit of a mixture. You’ve got to bear in mind that each individual how their CF impacts on them can change. It depends on their age, it depends on things like where they live. But there are certainly elements to this that are more common. So, one in three people with CF have CF related diabetes for instance. People can spend challenging times with breathing. They need to have a high calorie intake, diet, and all of the extra food. That means you’ve got to have sometimes an extra fridge or larger capacity to store it all. And you’ve also got all of the additional complications that come around breathing, so therefore you might need medical equipment at home, a nebuliser or something. And a lot of this then becomes part of the daily routine that you’re doing. Like I said, sometimes when you take medications it can be up to 40 pills a day.

NIKKI- Forty, gosh that’s a huge amount. 

EMMA- That’s a lot of pills. A recent report from the University of Bristol found that the added cost of having cystic fibrosis are around £6,500 a year. Ben mentioned a few of those there, Holly, but can you tell us a bit more about those extra expenses that you incur?

HOLLY- Yeah. So, it’s just generally about keeping Amelia as well as possible. And extra costs, of course everybody is sort of struggling energy wise with gas and electric and things at the moment, but obviously that extra vital equipment that you need to store her medication, to use her nebuliser, to heat the home, to keep her warm and keep her well as possible is really important. Also physio equipment, airway clearance equipment; hospital stays, so parking expenses, fuel. And we have to buy a balanced diet, again, but fruit and vegetables are absolutely key to Amelia’s health; and gaining weight as well is quite difficult for them sometimes. And me and my husband have found ourselves not having fruit like we would before because it’s more important for Amelia and Alfie, my six year old son, to have those instead of us.

NIKKI- And prescriptions as well, you were mentioning, or Ben was mentioning the medication, and often some people have to take 40 odd tablets a day. You must have quite a high prescription bill?

HOLLY- She doesn’t pay at the moment. But of course we want to shout about it and tell people about it, because it is a worry on us as parents. As soon as she gets to 16 it’s another financial thing, and then obviously when she flies the nest eventually it’s another financial burden for her as well. 

EMMA- Ben, who has to pay and what can those costs be?

BEN- There are some exemptions that are out there. So, for instance if you’re pregnant you get free prescriptions as an adult. If you have diabetes, so if you’ve got CF related diabetes you get free prescriptions. We calculate that it’s around 2,500 adults with CF in the UK who do pay for their prescriptions. Obviously in Scotland, Wales, Northern Ireland that’s covered by the governments there. But this group of people all live in England where we don’t have free prescriptions. These are life-changing medications that can really fundamentally shift their future, the quality of life for those people who have CF. So, there’s a fairness and equality issue here that says why should you have to pay to be able to enjoy a healthier life. But at the same time on top of it everybody across the country is feeling elements of the cost of living crisis. But we know the additional financial costs of living with CF: £6,500 a year on average. Yes, there will be people who that doesn’t apply to, and there will be people who that will be a higher figure for. But ultimately all of this adds up. 

NIKKI- Yeah, I can totally see why people with CF are struggling when you go through all of that. Holly, it’s difficult for me to ask this question because it sounds so awful, but CF is potentially life-limiting, isn’t it?

HOLLY- Yes, yeah, that’s right. 

NIKKI- And I wonder, it must be very difficult for you knowing that but also struggling, particularly at the moment, with all of these extra costs when actually you probably just want to give your daughter the best possible time. 

HOLLY- Yeah, it takes a mental strain, definitely, when you know it’s a progressive condition and you know the potential risks and things. And you just want her to have the best, and just to keep her well every day. And sometimes even those times it’s not enough and she does get poorly. So, yeah, that is very tough. 

NIKKI- Are there things that she can’t do because obviously you’re having to worry about money?

HOLLY- Yeah. So, since all the cost of living we were going to a trampoline park, which trampolining is really, really good, like the bouncing action, just general exercise. But that has gone on hold. We live month to month counting the pennies. There have been times where I’ve had a hospital appointment with Amelia, just as a general check-up, she goes every two months, and I’ve had to dip into the penny jar for £3.50. And then when I’m actually at the appointment I’m thinking, I’m hoping this doesn’t go over three hours because then it goes up, and I haven’t got the money. 

NIKKI- That’s for parking, is it? 

HOLLY- Yeah. 

BEN- I’d add to that Nikki, that Your Life and CF report that we’ve just published, we found some pretty shocking things through our report this year. 7% of people with CF that took part in the survey reported having to use a food bank in the last year. Now, it doesn’t seem much, but that’s double the national average for the whole population, so that’s a pretty significant difference for the CF community. 

NIKKI- Ben, what changes do you want to see? 

BEN- We’re obviously working hard to try and advocate for the whole CF community. So, there’s a range of options that we think really could help people with cystic fibrosis. We’ve already talked about prescription charges, but it goes well beyond that; we think that there should be free parking at hospitals for people with cystic fibrosis. Of course part of the challenge for cystic fibrosis is the exposure of cross-infection and being out there. So, more affordable travel, perhaps a subsidised travel scheme for patients at hospitals. That would be a real way that the government could intervene to try and make things fairer. We think there needs to be an affordable energy scheme through a social tariff that means that people with CF can have a warm home, and that can keep them healthy. 

NIKKI- Thank you Ben, thank you Holly. Well, we contacted the Department for Health and Social Care about the report and this is what they had to say: 

QUOTE- We recognise people with cystic fibrosis face extra costs, which is why many will receive any extra £150 disability support payment this year. We also have taken steps to support people with the cost of NHS prescriptions. And almost 89% of prescription items in England are already provided free of charge. For those not exempt from charges pre-payment certificates can be used to cap costs at around £2 a week for regular prescriptions. And the NHS offers help with costs for people on low incomes.

NIKKI- Thank you so, so much Ben, and thank you so much Holly as well. And Holly do give Amelia a big old squeeze from us. 

HOLLY- I will. 

NIKKI- Blimey, that’s the end of another show, Ems. 

EMMA- Yeah. What about Jack Thorne though? 

NIKKI- Oh, it was such a treat to have him in earlier. I just think he is brilliant. And his drama is just such an incredible watch. We’ve got Rose Ayling-Ellis on in a couple of weeks too. 

EMMA- Smashing it with the disabled celebrities!

NIKKI- Big guns. 

EMMA- We’ll be back next week in all the usual places, wherever you listen to us, online, on your smart speaker, on 5 Live, on your podcast machine. 

NIKKI- See you then people. 

EMMA- Bye bye. 

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