91Èȱ¬

30th April 2024

Access All – Episode 102

Presented by Emma Tracey

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EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Here we are again with another massively busy week for disability news in the UK. I mean, the word disability has actually been uttered this week many times on our TVs, on our radios, written in our newspapers, and we’re going to bring you as much of that as we can. We’re going to talk about exam adjustments for people doing their GCSEs and A-levels. And we’re going to talk about proposed changes to Personal Independence Payments. So, on with the show.

MUSIC-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Theme music.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Hello, and welcome to Access All, the 91Èȱ¬â€™s weekly disability and mental health podcast. I’m Emma Tracey, and over the next half an hour or so, as well as getting into all the politics that’s been around this week, I’m going to speaking to Pippa Stacey whose new book about living life with a chronic illness is out now. Please subscribe to us on 91Èȱ¬ Sounds or wherever you get your podcasts from and get in touch. We’re accessall@bbc.co.uk.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý The government is proposing some changes to Personal Independence Payments, that’s the non-means tested benefit which is designed to cover the extra costs, or some of them anyway, of being disabled. The idea for the changes was introduced in the Prime Minister’s speech a couple of weeks ago, which was mostly focused on getting more people back to work. Now a green paper has been published specifically aboutÌý Personal independence Payments and what the government would like to see happen to those, and the consultation is open for three months. Here to talk to me about the green paper, what it's all about, what it means and what we can expect from the consultation is the head of policy at disability charity Scope, James Taylor. James, this green paper’s all about PIP, isn’t it?

JAMES-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It is. It’s all about PIP, it’s all about reforming and modernising PIP, in the government’s words, and I think ultimately how to bring some of the cost of the total PIP down.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Right, so that’s interesting because the original speech was about work, and PIP is not a work-related benefit, is it?

JAMES-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s not. And I think there has been so much confusion over the last, sort of, week since the Prime Minister announced this a week ago about what PIP is there to do. A lot of conflation between out-of-work benefits and PIP. I think, you know, PIP is not an out-of-work benefit; you can claim it if you work, you can claim it if you don’t work. And I think this confusion is probably causing quite a lot of anxiety at the moment.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, why do you think there has been that confusion? Why was PIP included in that speech and then specifically pulled out for a consultation?

JAMES-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It probably demonstrates a lack of knowledge and a lack of nuance about our welfare system. I think it probably points to people’s stereotypes about disabled people. This consultation though is purely about PIP. It’s purely about, in the government’s words, about how we can make PIP targeted at those who might need it most.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Okay. So, how are they proposing that they make PIP more targeted to who needs it most?

JAMES-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Having read the consultation there’s very little sign of a clear strategy of actually what the government wants to do. And ironically a lot of this has been trumpeted around the need to reduce the welfare bill, the need to reduce the spend on PIP; but nothing in the consultation talks about how much money might be saved. The consultation spends a lot of time focusing on some quite big questions about what the assessment might need to look like, what activities might need to be included. But then it goes on to explore things like whether PIP should be a voucher based system, or should there be a catalogue that people can choose things from, or should people provide receipts instead of getting cash – which is the case with PIP at the moment. I would say with any of these things they’re all proposals, it’s really unclear how any of this would actually work in practice or would really save the government any money at all. And the government have made clear that nothing will change until after an election. If people have an opinion, if people have a view please have a look at the consultation and do complete it.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý But I mean, sometimes people aren’t happy with how the assessments for PIP are done at the moment. The government says that the money that’s given out for some disabled people isn’t actually enough, as well as saying that they want to lessen the money for other people or lessen the amount of support that they get. Don’t changes need to happen?

JAMES-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. I think anyone who’s used the welfare system, been assessed or claims or uses benefits at the moment would agree it’s not great. but the way to have this conversation is to engage disabled people, and it’s to really think what do we want our welfare system to do? How do we bring in kindness? I think ultimately how do we bring in some trust between the people who are using it and the people who are assessing you? It feels like the starting point for the government conversation and consultation is how can we bring down the bill as quickly as possible, and our solution is to make it much harder for people to claim. And I think that’s a really difficult thing for many disabled people to hear because we need to be building a system that works for everyone; we shouldn’t have our focus just on how do we bring the cost down.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý But they are sort of targeting their changes at specific aspects of the disability community. They’re talking a lot about mental health or have done in the initial speeches certainly.

JAMES-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý They are. There’s been a big focus on two mental health conditions, on anxiety and depression. And statistics have sort of shown that there’s been a huge increase in the number of people who say they have anxiety, say they have depression, and a huge increase in the number of people who now claim PIP as a result of that condition. What some of the government have been saying is that this is a mental health culture that’s gone too far. Our position, and I think many others’ position would be, well this is the result of NHS waiting lists that are now out of control, the result of rising poverty and the result of poor quality jobs, which all impact on our mental health. This isn’t about someone’s individual circumstances; this is I think the impact of six or seven, eight years of declining investment in the things that would actually improve this country’s mental health and wellbeing.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Okay. So, at the moment PIP is given out as cash, if you manage to get access to it, into your account. So, there are low and high rates of mobility, and there are three different rates of care. So, it’s money and it’s specifically targeted at those two areas. When you’re thinking about the proposals around vouchers for equipment or receipts for maybe things like talking therapy, is that practical does Scope think?

JAMES-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Our initial reaction is no. I can’t see any government department wanting to deal with thousands, millions of people’s receipts and reimbursing them.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It sounds like a lot of admin, doesn’t it?

JAMES-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I think it sounds an incredible amount of admin, more admin than the system is at the moment. And, you know, claiming and accessing PIP is not an easy thing to do. Most people do not get it when they apply. It is also not a lot of money. If you are able to get the higher rate it is around £800 a month. Now, that is a lot for some individuals, but some of what we’ve been hearing is that people are claiming thousands and thousands of pounds a month from PIP. That is not true.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I think on vouchers, again that feels extremely stigmatising. I think you only have to look at where voucher schemes across the world, in places like America, and food vouchers, food stamps, many people feel quite stigmatised and discriminated against for having to use them.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

JAMES-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, actually the cash that PIP provides really gives the individuals who access it a better standard of living. And that is what PIP is all about really: offsetting the inequalities that many disabled people face just because of who we are.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Do you think they don’t trust disabled people on how they use the money? Do you think that might be a reason for changing it over to that sort of format?

JAMES-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý You could say that’s how it is coming across: we will only allow you to spend money in certain places on certain things. It could be a way of trying to control how people use PIP more. I think what we know from our own research into PIP is that people use it for a whole range of different things to offset the cost of disability. And trying to categorise it into a small number of areas is extremely difficult, and will probably mean many people will miss out.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý But it could mean more targeted help. It could actually mean that someone gets the talking therapy, could it, that they need? Or it could mean that someone does get the power chair that they need, that they don’t have to crowdfund it this time.

JAMES-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I mean, it could potentially I suppose with therapy yes, that would be great. To access therapy we’ve got a 2 million long waiting list to access NHS talking therapy services. So, I think reforms to PIP and conversations about PIP cannot happen in isolation. We need to be able to have the conversation about the bigger drivers of what’s really causing economic inactivity in this country. So, it’s fine to say we’ll refer you to therapy, but if you then are faced with a huge waiting list to even access it that doesn’t really improve anything.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý James Taylor, thank you.

JAMES-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Thank you.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Here’s the government’s thoughts on the publication date of their green paper:

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Over 2.6 million people of working age now get Personal Independence Payments, with monthly new claims doubling since 2019. The government is worried that the PIP bill is going up and up and seems to now have a great deal more people with mental health difficulties since the pandemic. They say they want people to get the support they need to achieve the best outcomes, with an approach that focuses support on those with the greatest needs and extra costs.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Over the next few weeks teenagers all over the country will be doing their A-levels and their GCSEs. Every year thousands of them are given something called exam access arrangements. And as the numbers of students increase so do the numbers of people getting these arrangements, which has led to some headlines like this:

PRESS-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Campaigners have accused parents of gaming the system over the scandal of record numbers of GCSE and A-level students being given extra time to complete exams.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý But there is much more to these exam access arrangements than that. And somebody who knows all about them, somebody who’s right in the thick of it right now in a school would you believe, is Martine Chapman. She’s a specialist literary teacher at Dorothy Stringer School in Brighton. You’re so welcome, Martine. Thanks for joining me.

MARTINE-ÌýÌýÌýÌýÌýÌý Thank you very much. It’s a pleasure to be here.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What do we mean, Martine, when we talk about exam access arrangements? What kind of stuff are we talking about?

MARTINE-ÌýÌýÌýÌýÌýÌý We’re talking about making the exam process as accessible to those students who need our support as possible. So, we’re talking about students who may need a reader, a scribe, extra time because they have some kind of neurodiversity or a learning need that means that they’re not accessing the paper in the same way as the majority of their peers.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, a scribe is having somebody write the exam for you, you tell them what to write and they write it down?

MARTINE-ÌýÌýÌýÌýÌýÌý Exactly. And that is not an easy skill. We have a lot of parents and students who say, ‘Oh this student might be better off with a scribe’. But if we think about actually dictating to somebody, and it’s often somebody they don’t know, that is not the easiest thing for them to do. And that’s why from my point of view I have to get to know the student, and get to know their skills, what access arrangements will actually benefit them.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, how do you figure out then, or how does one figure out whether someone is entitled to an adjustment and what adjustment they’re entitled to?

MARTINE-ÌýÌýÌýÌýÌýÌý Okay, so from the beginning of Year 7 when they come into Stringer the students are screened then, so the basically literacy skills, so their reading and writing skills. That’s repeated, so Years 7, 8 and 9 they’re screened. And we also have teacher feedback that they will let us know what’s going on in the classroom. When they get to Year 9 that’s when the exam boards and the council for qualifications, the JCQ, direct us to screen the Year 9 students who we know have a history of need. And that’s a set of assessments where we assess their literacy skills, along with their speed of processing skills. And that then informs what access arrangements we can apply for. Everything is set very strictly by the exam boards, by the JCQ so that we only apply for those students who meet the thresholds.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý We asked some of the Year 11 students from your school about what adjustments they get and why they need them. Let’s hear them:

STUDENT 1-ÌýÌýÌý I get 25% extra time, and that gives me the ability to answer all my questions in the exam.

STUDENT 2-ÌýÌýÌý I can start my paper later on and finish later on, and this just helps me with anxiety at the beginning.

STUDENT 3-ÌýÌýÌý I get 25% extra time and I also get to put my answers on a laptop rather than writing it. It helps especially with some of the more wordy subjects like history and English because I struggle with the coordination and timekeeping of writing it.

STUDENT 4-ÌýÌýÌý I get a reader and a scribe in my exams because I’m dyslexic and I find it easier to work that way.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I was just wondering what are some of the lesser known arrangements that can be put in place? ÌýÌýÌýÌýÌýÌýÌý

MARTINE-ÌýÌýÌýÌýÌýÌý It is very pupil by pupil. Rest breaks is one of them where for some students who might have ADHD or autism extra time doesn’t suit them, the thought of sitting in the exam room for an extra half and hour. They would much rather take a break, and that can be at their exam desk where they literally put their head on the table, the paper is moved to one side, or they leave the room. You can have a prompt, somebody that if a child looks as though they’re drifting off we can say to them, ‘Are you okay? Do you need to start thinking about moving on?’ We can’t direct them to which questions to answer, but we can just give them a little nudge, remind them that they need to keep working.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Right, that sounds really helpful actually.

MARTINE-ÌýÌýÌýÌýÌýÌý And seating plans as well, you know. We have a massive exam hall, over 300 kids taking exams at one time when it’s a whole cohort English, maths or science exam. And sometimes the students they just need to know that actually I’m going to be at the back of the row so that I can see what’s in front of me, and I haven’t got the pressure of everybody watching me behind me. Or they prefer to be sat next to a door so that in their head they’ve got an escape route if they need one.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, really, really, really, really interesting. So, the extra time, which is something I had, how does that affect exam schedules? So, an exam schedule if you’ve got two exams in a day and you have quite a lot of extra time allocated to you, which you know you’re going to need to use, what happens then? What happens if they overlap?

MARTINE-ÌýÌýÌýÌýÌýÌý So, we have certain situations where that does happen. We have a Year 11 student this year who is registered as blind, and she will be using 100% extra time for her exams.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý That sounds like a nightmare! [Laughs]

MARTINE-ÌýÌýÌýÌýÌýÌý Exactly, exactly. And so the poor thing, there are times where she will need to be, often an exam needs to be put back by a long time, and so everybody else may have started, they may have done their exam or finished their exam already, and she has to be supervised on her own with an invigilator so that we know that we haven’t compromised the integrity of the exam, that she’s not been able to speak to somebody.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý That sounds horrible. It sounds like she must have enormously long days if she ends up having two exams in one day. And as a blind person myself I don’t have any more stamina than anybody else or, do you know, and actually things take a bit more effort in a lot of cases.

MARTINE-ÌýÌýÌýÌýÌýÌý We can apply to the exam boards for students in that situation. They do have a timetable that is specifically modified for them. So, the longer exams, we speak to those students, we’ve had it in a previous year as well, and yeah, we speak to them, we speak to the parents, and there are some situations where you have overnight delays.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Right.

MARTINE-ÌýÌýÌýÌýÌýÌý And so the student then we have to have an arrangement with the parent that all access to social media is taken away from them.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Ah.

MARTINE-ÌýÌýÌýÌýÌýÌý Which in this day and age, bless them, is an absolute nightmare.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý You don’t feel like putting them in a bunker in the school, you know, have a little restroom?

MARTINE-ÌýÌýÌýÌýÌýÌý Well, I mean that’s an option [laughs]. Unfortunately we would then need to supervise them. And most of them, funnily enough, don’t want to spend the evening with their teachers.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý [Laughs]

MARTINE-ÌýÌýÌýÌýÌýÌý [Laughingly] I don’t know why, you know. We can be fun.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Martine Chapman from Dorothy Springer School in Brighton, thank you so much.

MARTINE-ÌýÌýÌýÌýÌýÌý You are very welcome. It’s been a pleasure to do this and to talk to you.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý How to Live Life with a Chronic Illness, a book by Pippa Stacey, is out this week, and it does exactly what it says on the tin, or cover I suppose. Pippa has ME or chronic fatigue syndrome and she does her best to live life to the fullest, would you say Pippa, as best you can?

PIPPA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, just trying to do what you can with what you have is the big thing, the big lesson that I’m trying to take forward. You can’t always do everything you want to, but it’s about figuring out about working with what you’ve got and how you can live a life that still feels like yours.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, what is the book about? Tell me a bit about the various aspects of it.

PIPPA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I think the reason I wanted to write a book like this is because when you’re diagnosed with a chronic illness the support that’s out there is very much geared towards the medical side of it, so things like medication, managing your symptoms. And those things are really important and we definitely need more of them. But the gap I’ve always felt is what about the rest of life, what about the rest of the stuff that makes up my identity and how I like to spend my time, how do I go about making that sort of stuff accessible as well. So, I wanted to share my lived experiences in the hope it would give other people ideas for how they might do the same.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Then in that case let’s get the medical bit out of the way first, because I think it is useful to find out your situation to then find out why you’ve written what you have and what you’ve written. So, what is ME or chronic fatigue syndrome and how does it affect you?

PIPPA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s something that I’ve been living with for many years now. I got my diagnosis ten years ago, but I first started with the symptoms about four years before that. So, I would go to the doctor over and over again and I would try and explain that I had this fatigue that wouldn’t go away, no matter how much I rested. I was feeling really unwell, and I didn’t quite have the language to explain it. But eventually, just after a casual major relapse in a foreign country [laughs], all good fun…

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Where were you?

PIPPA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I was in Greece, Kos, working as a child holiday rep, working with little kids on holiday camps [laughs].

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And what happened to you there?

PIPPA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh my gosh, it was the final straw. I’d been pushing my body for years and years and trying to ignore that something was wrong because I’d been told that it was all in my head and it didn’t really exist. And then it got to a point where I finally stopped and I laid down in my hotel room, and my whole body just went through this really weird experience: it felt like I had poison running through my veins. And from that moment onwards, I had a really poorly night, I got some broken sleep, and I woke up next morning and things were just not the same. And it was at a point then when I just couldn’t ignore it anymore.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, your symptoms were so severe really, I mean, to make it very medical [serious voice] your symptoms were so severe Pippa…

PIPPA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý [Laughs]

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý …that you couldn’t go on. And your life was very full and busy before, wasn’t it?

PIPPA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It was, yeah. prior to this point I had quite a unique childhood, so I was very happy, I did normal school like any other person, but I was also training in classical ballet. It feels weird to say now. I was spotted by a leading British ballet company and I was doing very intensive training from the age of 9 to about 14.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, so I mean with all the books and the TV shows about ballet, it’s hardcore.

PIPPA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It is. They used to say to us when we were quite little, no pain, no career.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh my god! [Laughs]

PIPPA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. So, it’s a wonder why I am the way I am now, why I try to push through so much.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, you probably have quite a high pain threshold in that case?

PIPPA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, this is the thing. I have a thick skin, you have to in that environment, and it takes quite a lot to faze me. And that’s how I know that what I’m experiencing now is not for the fainthearted [laughs].

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, because you do experience pain as part of your disability, don’t you?

PIPPA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, chronic pain in, like, your muscles and your joints. A lot of people have head pain and migraine; that used to be one of the big symptoms for me. And just pain from sensory experiences as well; too much noise or light can really send people over the edge as well.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And you have some interesting ways of describing your pain in your book.

PIPPA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, I’m trying to remember which ones I used. I think the poison being pricked into your feet is the one that comes back to me more and more again. It just feels like poison is through your bloodstream sometimes.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, something bad is running through you?

PIPPA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. it’s like think about the most unwell you’ve ever felt, and you’re thinking oh my gosh, how did I ever complain about anything before I felt like this, it’s like that. But that’s the sort of innate sensation that’s there longer term. And you have better days and you have worse days, but the main thing has been trying to figure out how to live with that level of illness.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, how did you get diagnosed eventually?

PIPPA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It was only after that major relapse that my mum actually came into the GP appointment with me, because up to that point the GP had always explained away my symptoms, tried to attributed them to things like hormones and stress over exams. So, my mum came in and she really fought for me and she said, ‘This is not normal, this is not okay, and I’m not leaving until we have some answers’. And it was only then when I finally got the referral to a specialist service, and that was when I was diagnosed with ME.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, that’s really interesting that you had so much trouble with your GP, because ME and various chronic illnesses they’re still quite misunderstood, are they?

PIPPA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý 100% yeah. And I think when you’re that age as well, like I was 14, 15, the GP is the authority figure, and you don’t really have the language to explain how much it’s affecting you. And when you’re sat there in a GP consulting room and you look like any other 14, 15 year old, like, it’s not right that they push it to one side, but the way I appear definitely doesn’t reflect the way I feel 99% of the time. And that’s one of the things that we stillÌý have a lot of stigma around: the fact that people don’t look the way they feel, and so their symptoms can sometimes be brushed to the side or thought that they’re less significant than they are.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And how was it affecting you? Like, you’re sitting here right now chat, chat, chatting. What’s going on in Pippa?

PIPPA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý [laughs] good question, what is going on? I am very lucky now, I have experienced a lot of improvement. Like the fact I can sit here today and chat to you marks a significant improvement. So, while I’m sat here now I have pain throbbing in my head, I have quite…my fatigue isn’t too bad today actually, it’s okay, but my limbs feel quite heavy like they’re made of lead. When we’ve finished up today I’ll go back to my hotel room and I’ll have to rest and I’ll have to just be in quiet and darkness to kind of recalibrate a bit. But back when I was at my worst it was the majority of the day in bed. Being out of bed for a few hours was an accomplishment. And for a lot of people they’ve lived in that state for many years, so I am very much one of the lucky ones.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And what happens when you’re in bed all day? Is it lonely?

PIPPA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Of course, yeah. I think people often have this misconception that it must be so nice to spend all day in bed, and you’re watching Netflix and eating snacks; when the reality is it’s often complete rest that’s needed. Sometimes even watching TV for ten minutes or scrolling on your phone for five minutes necessitates a rest afterwards because of the sensory input. So, in those early days it was very much like I was segregated from the rest of the world. I felt like I didn’t really know what my place was in it anymore.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý You’ve had this over a lot of years, you’ve seen improvement, you’ve had worse days and good days. Is that why you wanted to write a book about it to kind of show other people who are 14, 15 struggling to get a diagnosis what it can be like and how you can manage it?

PIPPA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Absolutely. And I think the big thing as well is once somebody has that diagnosis it can really feel as though your life is over and all the best days are behind you. There isn’t really a prognosis or a recovery trajectory. It’s very, very different between people. Some people do experience recovery; some people get worse; some people kind of fluctuate up and down, which is the experience that I’ve had.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. So, is that why there’s a journaling aspect? Is it quite useful to journal that sort of thing to show medical people, to show yourself that you’ve had better days?

PIPPA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý For sure, although I’ve tried to take the focus away from the symptom experience and think more about life as a whole, so talking about things like hobbies and interests and goal setting. But it was important to have the journaling in there because I can only speak from my own experiences, and we all have the things that we love and our different hobbies and different interests and the glorious things that make us unique, so I wanted people to have the space to think about what they’ve read and what they can take away from it, but mostly how they can apply that to their own life and their own circumstances and the things that they want in life.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. And what are your goals, Pippa?

PIPPA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh, the big one for me I’m very happy to say is one I’ve achieved, and that was to have writing as part of my life. It’s something I’ve loved since I was tiny, and I never thought I’d be lucky enough to have it as part of my job, or even to write a book one day that other people would read. So, writing has always been the biggie for me. But outside of that I would love to start figuring out how I might travel a bit more. I want to start getting back to the theatre, which I love, and just figuring out how I can live a life that really feels like mine, even while navigating these very not ideal symptoms.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And do you know, your book has so many different themes in it from friendships and socialising, when you need to mind your energy, pacing, and dating and relationships. It feels like such a useful, useful thing for someone living with a chronic illness. And thank you for telling us your story and for explaining why you decided to write such a book.

PIPPA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Thank you so much. I really hope it helps people.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Pippa Stacey, thank you so much.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Thanks again to Pippa Stacey there for her really useful book. And there’s lots of different quotes and advice from various people with chronic illnesses in there as well, so a really, really great read. That’s your lot for this week’s Access All. Thank you to Pippa Stacey, James Taylor and Ms Martine Chapman from Dorothy Stringer School in Brighton. Contact us if you’d like to talk about anything we’ve discussed on today’s podcast. You can email accessall@bbc.co.uk. Get on the WhatsApp, stick the word Access before your message and send us a voice message or a text message to 0330 123 9480. And we’re @91Èȱ¬AccessAll on social media, so that’s Instagram and X, formerly known as Twitter. Please do subscribe to us on 91Èȱ¬ Sounds or wherever you get your podcasts. See you next week. Bye bye.

[Trailer for Reliable Sauce]

KIRSTY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Do you want to know what’s going on in the world but you can’t really be bothered to read the news?

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JONELLE-ÌýÌýÌýÌýÌýÌýÌý And me, Jonelle Awomoyi on our weekly podcast, Reliable Sauce.

KIRSTY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý We’re both journalists at 91Èȱ¬ News.

JONELLE-ÌýÌýÌýÌýÌýÌýÌý And each week we’ll be breaking down the stories everyone’s obsessed with. What the hell is going on with this Stanley Cup craze?

KIRSTY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý How often do you think about the Roman Empire?

MALE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý There are weeks that it will come up in my brain more than once.

JONELLE-ÌýÌýÌýÌýÌýÌýÌý Expect interviews with the hottest influencers and content creators.

KIRSTY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Jordan Theresa, welcome along. Matt, joins us now. Welcome to the Reliable Sauce studio!

MATT-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Thank you for having me.

KIRSTY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Let’s talk more about this with Catie Baser who’s in the studio with us.

CATIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Hi.

KIRSTY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And hand-picked experts to help us make sense of it all when we need them.

FEMALE-ÌýÌýÌýÌýÌýÌýÌýÌý So, the law is there, but we really need these social media companies to act.

FEMALE-ÌýÌýÌýÌýÌýÌýÌýÌý Terms like this seem quite flippant, but of course they can be really serious.

KIRSTY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And we willÌý have a little giggle too [laughter].

JONELLE-ÌýÌýÌýÌýÌýÌýÌý So, please come and join our spicy band.

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