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04th December 2023

bbc.co.uk/accessall

Access All 鈥� episode 81

Presented by Nikki Fox and Emma Tracey

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NIKKI-听听听听听听听听听听听听 Hey, Emma, I got very excited. I noticed there鈥檚 a Nikki Fox doing Desert Island Discs.

[Clip]

LAUREN-听听听听听听听 Dr Nicola Fox, welcome to Desert Island Discs.

[End of clip]

EMMA-听听听听听听听听听听 Yeah, the most recent episode. Did you forget you鈥檇 done it?

NIKKI-听听听听听听听听听听听听 I mean, you know I鈥檝e been having trouble with this CPAP machine that I need for my sleep apnoea. And I鈥檓 not getting any sleep whatsoever. And when I saw it I did think to myself, oh my goodness, have I really not slept that much that I鈥檝e done Desert Island Discs and I didn鈥檛 remember it [laughter], because it is the dream job. And so I had hoped that I would remember it. But yeah, I would love to go on Desert Island Discs, Em.

[Clip]

LAUREN-听听听听听听听 Nikki Fox, I want to talk to you about your mother. Tell me about her approach to bringing you up?

[End of clip]

EMMA-听听听听听听听听听听 But it wasn鈥檛 you?

NIKKI-听听听听听听听听听听听听 No, it wasn鈥檛 me, it was a doctor. [Singing] doctor, doctor鈥�

EMMA-听听听听听听听听听听 Dr Nikki Fox.

NIKKI-听听听听听听听听听听听听 Yes, which I am definitely not.

EMMA-听听听听听听听听听听 Head of Science at NASA, yeah.

NIKKI-听听听听听听听听听听听听 No, definitely not me. I have not got enough in the old bonce to be that smart. I mean, I would agonise for weeks beforehand as to what tracks I would choose. It鈥檚 stressing me now thinking about it.

EMMA-听听听听听听听听听听 Well, you don鈥檛 have weeks to agonise.

NIKKI-听听听听听听听听听听听听 No, I don鈥檛.

EMMA-听听听听听听听听听听 Because let鈥檚 pretend that we鈥檙e on Desert Island Discs right now.

NIKKI-听听听听听听听听听听听听 Okay.

EMMA-听听听听听听听听听听 [Desert Island Discs theme music] Nikki Fox?

NIKKI-听听听听听听听听听听听听 Yeah.

EMMA-听听听听听听听听听听 If you could take one disc to the island what one would it be?

NIKKI-听听听听听听听听听听听听 Oh. Don鈥檛 you come up with different tracks on Desert Island Discs?

EMMA-听听听听听听听听听听 Yeah, but I thought I鈥檇 try and shortcut it and get to the last one.

NIKKI-听听听听听听听听听听听听 Okay, one of them would be Moments of Pleasure by Kate Bush from the Red Shoes album. It links to my family, it鈥檚 beautiful and it makes me cry. If it was going to be an album, I鈥檓 just going to put it up there, it would be Kate Bush Hounds of Love.

EMMA-听听听听听听听听听听 Okay. So, what would your luxury item be?

NIKKI-听听听听听听听听听听听听 Oh, that鈥檇 be wax strips [laughs].

EMMA-听听听听听听听听听听 But no one鈥檚 going to see you on the island!

NIKKI-听听听听听听听听听听听听 It doesn鈥檛 matter. I don鈥檛 wax for anyone else, Ems, I wax for me.

EMMA-听听听听听听听听听听 Anyway, let鈥檚 move on. You can take the Bible and the Collective Works of Shakespeare, but you can also take one more book to the island. Nikki, what would that be?

NIKKI-听听听听听听听听听听听听 Does My Bum Look Big in This by Arabella Weir.

EMMA-听听听听听听听听听听 Wow. Why?

NIKKI-听听听听听听听听听听听听 It鈥檚 just the first book I ever read and I was so proud of myself for reading it.

EMMA-听听听听听听听听听听 I met her on a train once.

NIKKI-听听听听听听听听听听听听 Did you?

EMMA-听听听听听听听听听听 I did. Now, how accessible do you think this island would be for you, Nikki?

NIKKI-听听听听听听听听听听听听 [Laughs]

EMMA-听听听听听听听听听听 How are you at roughing it?

NIKKI-听听听听听听听听听听听听 Oh, I鈥檇 be lucky if I lasted two days, let鈥檚 face it. But I鈥檇 be hair free.

EMMA-听听听听听听听听听听 Well, Nikki, thank you for joining me on this Desert Island Discs.

NIKKI-听听听听听听听听听听听听 Somebody get this girl the gig.

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 This is Access All from the 麻豆社, where we have gone 100% Christmas.

EMMA-听听听听听听听听听听 Uh, no we haven鈥檛. That鈥檚 another radio station, Nikki. I think the 麻豆社鈥檚 a little bit more restrained than that.

NIKKI-听听听听听听听听听听听听 That鈥檇 be such a nice gig though, wouldn鈥檛 it, playing Christmas songs all day every day. But this is a nice gig too, innit, you know. We are the 麻豆社鈥檚 disability and mental health podcast, and we鈥檙e here every week. I鈥檓 Ronan Keating.

EMMA-听听听听听听听听听听 Uh, she鈥檚 actually Nikki Fox, and I鈥檓 Emma Tracey.

NIKKI-听听听听听听听听听听听听 Now, this week, finding it hard to get a wheelchair? Well, a new report agrees with you.

EMMA-听听听听听听听听听听 And we鈥檙e still celebrating International Day of Disabled People and have teamed up with Radio 3, get us, to talk about access to music. It鈥檚 all linked to an instrument called the clarion which has been created for everyone to play.

NIKKI-听听听听听听听听听听听听 I love it, I love it. And we鈥檝e talked about this before, but today we鈥檝e got a personal take on the subject. ADHD and autism is not recognised as easily if you鈥檙e a woman or a girl. Author and influencer Ellie Middleton is here to talk about this in about 20 minutes鈥� time.

EMMA-听听听听听听听听听听 Like, subscribe, follow us, hit those buttons wherever you see Access All, and tell your friends about us because we want to get this programme to as many people as possible who could benefit from it, which is everybody really.

NIKKI-听听听听听听听听听听听听 A new report out today paints a bleak picture for wheelchair users in England. It says provision for funding is a postcode lottery causing some users to have wheelchairs that don鈥檛 meet their needs, and many waiting long periods of time to actually get a chair. Now, joining us on the podcast to talk about this is Nick Goldup from the Wheelchair Alliance who commissioned the report. Hello, Nick. Thank you so much for coming on.

NICK-听听听听听听听听听听听听听 Thanks very much for having me.

NIKKI-听听听听听听听听听听听听 Oh, it鈥檚 brilliant, thank you. And we鈥檝e also got lovely Lachlan 鈥� I鈥檝e pronounced it right have I, Lachlan? 鈥� from Devon.

LACHLAN-听听听听 Yes, you have.

NIKKI-听听听听听听听听听听听听 Ah. Hey Lachlan. Now, we鈥檙e going to talk about your chair situation in a minute, so bear with us darling, bear with us. But Nick, let鈥檚 just establish some facts first of all for anyone that doesn鈥檛 know how the wheelchair service runs. But I鈥檓 right in saying that anyone who needs a wheelchair, whether that be temporarily or permanently, is entitled to one through the NHS. Normally people need a referral through the GP or any kind of specialist wheelchair service. That is correct? I鈥檝e not oversimplified that, have I?

NICK-听听听听听听听听听听听听听 No, that is correct, yes. People who need a wheelchair should be able to access that through their wheelchair provider.

NIKKI-听听听听听听听听听听听听 Perfect. So, the Wheelchair Alliance you鈥檝e got this report out today, give us an idea of the state of the wheelchair services in England. Just how much variation is there? Because we mentioned it鈥檚 a postcode lottery, so just fill us in, Nick.

NICK-听听听听听听听听听听听听听 I suppose for about three decades now we鈥檝e had reports made by various different people, government, voluntary sector, charities, and very little action in terms of improving access to the right wheelchair at the right time. And just last year the Wheelchair Alliance we pulled together our first report which really looked at the state of the nation. And there were three things really we found: one was that the funding levels were totally unacceptable, so the government spending on wheelchairs was averaging at about 拢196 per person per year.

NIKKI-听听听听听听听听听听听听 Wow.

NICK-听听听听听听听听听听听听听 So,听 that鈥檚 everything from a basic chair all the way through to a power chair, and maintenance and insurance. And data didn鈥檛 exist, so there was a real data desert. So, how can you understand the scale of demand if you don鈥檛 know how many wheelchair users you鈥檙e seeing through your local service?

NIKKI-听听听听听听听听听听听听 That is not going to cut the mustard, is it, 100 odd quid per person?

NICK-听听听听听听听听听听听听听 It鈥檚 not. And that鈥檚 an average. But that鈥檚 really a reflection of the lack of data.

NIKKI-听听听听听听听听听听听听 Which is always a problem when it comes to disability. I spend my life in this job just fighting with a lack of data. Also I used to know the wheelchair services, I always used to call them the NHS wheelchair services, but obviously, like we鈥檝e touched on, it鈥檚 all be diverted now, hasn鈥檛 it, to 42 integrated care boards. Is that right? So, basically just explain how it all works now, rather than all coming from the NHS.

NICK-听听听听听听听听听听听听听 I鈥檒l try and do it simply. There are 42 integrated care boards, so they are the organisations that basically commission 鈥� when I say commission, sort of buy the services on behalf of government so that local services can be run. And there鈥檚 a lot to be said about running services locally: you can meet local needs and make sure that the service matches local need. But with that comes a host of issues as well in terms of variation, and the report really digs into this and shows that if you鈥檝e got 42 different ICBs they鈥檝e got different contracts; they鈥檝e got different providers, some of which are the NHS and some are private organisations, and that split is about 55%, 45% private; different funding model; different methods; different levels of funding. And so what happens inevitably is you get these different eligibility criteria. So, they need to manage their budget so they say, if you have a certain disability or you can, I don鈥檛 know, walk a certain distance then we won鈥檛 give you a power chair, you can have a manual chair.

NIKKI-听听听听听听听听听听听听 And I suppose as the person that needs the wheelchair you鈥檙e not in control of where you live, are you? So, it鈥檚 not like you can go, oh I鈥檓 going to be in an area where it鈥檚 coming out of the NHS; you鈥檝e got no say in that really, have you? And I wonder, how do you find in your capacity, how is the money being spent really. Do you find it鈥檚 being spent efficiently across the board or not?

NICK-听听听听听听听听听听听听听 Well, because of the variation, as I say, in different levels of service you get different quality. And if you think about how money is spent through the wheelchair service there鈥檚 only two areas really where you can flex: and one is staff, and we need more staff supporting our NHS wheelchair services; or it鈥檚 equipment. And especially when the cost of equipment has gone through the roof in the last year or so the budgets have just come under a lot of pressure, a lot of strain.

NIKKI-听听听听听听听听听听听听 Are there parts of the UK that are worse than others when it comes to all this provision and eligibility criteria and everything?

NICK-听听听听听听听听听听听听听 It鈥檚 hard to say without, you know, I don鈥檛 really want to name names. But there are areas where people have a tougher time of getting what they need. But the benefit of having the right wheelchair is just huge in terms of autonomy, integrating into the community, travel, better education opportunities, and physical health as well, fewer pressure sores hopefully if you鈥檝e got the right piece of equipment you have a reduced likelihood of falling from your chair or having back pain, just improving your overall fitness through the right wheelchair.

NIKKI-听听听听听听听听听听听听 Yeah, 100%. Now, Lachlan, you鈥檝e been hearing all of this. Hello.

LACHLAN-听听听听 Yes, hello.

NIKKI-听听听听听听听听听听听听 You鈥檙e from Devon, aren鈥檛 you, darling. You鈥檙e 19 and you鈥檙e studying at college at the moment. What are you studying, out of interest?

LACHLAN-听听听听 I鈥檓 studying a Level 3 in health and social care.

NIKKI-听听听听听听听听听听听听 Nice, very interesting. So, tell our listeners what your current situation is. And do you mind me asking what disability you鈥檝e got?

LACHLAN-听听听听 So, I鈥檝e got Ehlers-Danlos syndrome, which is a connective tissue disorder, so I don鈥檛 have enough collagen. So, I use my wheelchair for that purpose. I don鈥檛 always use my wheelchair; I can walk quite a bit, but that increases fatigue.

NIKKI-听听听听听听听听听听听听 So, what have you got at the moment, what are you sitting your tush on?

LACHLAN-听听听听 I've currently got a Quickie Argon 2.

NIKKI-听听听听听听听听听听听听 Is that a motorised, do you mind me asking?

LACHLAN-听听听听 No, it鈥檚 a manual active use chair. The one I鈥檝e ordered next is the same type of chair, just a bigger version of it because I鈥檝e grown.

NIKKI-听听听听听听听听听听听听 But it鈥檚 not appropriate for you right now.

LACHLAN-听听听听 No.

NIKKI-听听听听听听听听听听听听 And as Nick鈥檚 touched on, I鈥檓 sure we鈥檒l go back to Nick as well, the wrong type of chair can be very detrimental. Is this particular one that you鈥檙e in now causing any problems for you?

LACHLAN-听听听听 I鈥檓 quite lucky in the fact that because I move around pressure sores aren鈥檛 a massive concern for me because I don鈥檛 sit still. But if I sat in a chair properly, how it鈥檚 designed to sit in, it would tear on the back of my legs. But I get around that by not sitting in it correctly; but then that causes other issues. So, it鈥檚 sort of a balancing act.

NIKKI-听听听听听听听听听听听听 So, how long have you been waiting for this new chair that you are due?

LACHLAN-听听听听 On 16th February we requested an appointment with Wheelchair Services of 2023, and that was when I first found it properly not fitting. It took till 4th April for us to have an appointment with Wheelchair Services, and at that appointment the clinician they didn鈥檛 feel confident prescribing a chair in the manner I needed it. The upper leg part needed to be longer than typical, so it delayed the whole process. And it鈥檚 really difficult one where you have to constantly ring them up, you have to constantly push them. Nothing gets done unless you鈥檙e literally on the phone to them sort of chasing the progress of the chair.

NIKKI-听听听听听听听听听听听听 When are you expected to get your chair, Lachlan? This is the thing, right.

LACHLAN-听听听听 I鈥檝e got an appointment for 15th December.

NIKKI-听听听听听听听听听听听听 Right okay. And is that when you pick it up?

LACHLAN-听听听听 That鈥檚 when I should get my chair. I should receive it on that date. I鈥檝e not got high hopes for it from a perspective of the whole process has been quite a messy process. And at no point have I received any confirmation that a chair has been ordered at all. And I鈥檝e lost count of the times we鈥檝e rung them up, we鈥檝e asked where it is in the manufacturing process, we鈥檝e asked is this confirmation it鈥檚 been ordered. The only thing that we鈥檝e had confirmation for is from the PWP team that I paid 拢50 for having a nice colour of paint rather than the standard, and 拢50 for castors as well. But other than that we haven鈥檛 had any confirmation paperwork at all to prove that I鈥檝e ordered anything.

NIKKI-听听听听听听听听听听听听 Does that worry you?

LACHLAN-听听听听 Previously I鈥檝e had bad experiences with chairs not being right, I鈥檝e had it before the chair鈥檚 come completely the wrong size, so much so that I couldn鈥檛 even squeeze into it, let alone it fit me correctly. I hope it鈥檚 right, I really do, and I really want it to be right, but I just don鈥檛 feel like it will be.

EMMA-听听听听听听听听听听 We reached out for a statement from the National Health Service executive and they said: the NHS is providing wheelchairs for the vast majority of people who need them within 18 weeks. And the NHS provides personal wheelchair budgets which give people more choice and control.

听听听听听听听听听听听听听听听听听听听听听听听听 And just a little bit of extra information: we鈥檙e told that in the second quarter of 2023 over 80% of adults and children had equipment delivered within that 18 weeks.

听听听听听听听听听听听听听听听听听听听听听听听听 Nick, what reforms would you like to see? What is the solution to this issue?

NICK-听听听听听听听听听听听听听 There鈥檚 a few things really we鈥檇 like to see. So, the report pulls out that firstly more investment is needed in wheelchair services, so that would result in such a huge positive economic impact. We calculate that, it鈥檚 not a lot of money, 拢22 million each year could really unlock some benefits to society that we estimate would be worth about 拢60 million. There are details in the report, but if the benefit to individuals increases by 1%, which is very, very modest, that benefit could be unlocked. If it was a 5% increase that would be 拢315 million benefit to society is the figure put on that. So, it seems a no-brainer.

EMMA-听听听听听听听听听听 So, 拢22 million and you guys have figured out that it would turn into 拢60 million in terms of what people could do if they had the right chair, work, out in the economy etc etc?

NICK-听听听听听听听听听听听听听 Absolutely yes. And I don鈥檛 know the overall budget of the NHS, but 拢22 million feels like a rounding error I would imagine. It鈥檚 not a lot of money, which would improve the quality of provision across England. And that needs to be spent on frontline services; it needs to be spent on people to run these services, staff I mean to do the assessments, but also on equipment. So, my next ask would be really that the NHS recognises this issue and we can implement some changes. This has to be the report that triggers change. We can鈥檛 put this on the shelf and let it collect dust; there鈥檚 been too many over the last decades [ironic laugh]. This needs to drive change, and that鈥檚 the goal of the Wheelchair Alliance.

EMMA-听听听听听听听听听听 Well done for getting that in, Nick.

NIKKI-听听听听听听听听听听听听 Yes, well done. Honestly, I love that. Thank you so, so much guys. Well, if you鈥檝e got anything to tell us about this story, if you鈥檙e having a problem with a wheelchair or if you can鈥檛 get the right one, or you鈥檙e waiting, like Lachlan, for well pretty much nearly a year, then get in contact with us: accessall@bbc.co.uk is our email address. And also check out the Wheelchair Alliance website as well. Thank you, thank you, thank you, you two.

LACHLAN-听听听听 Thank you.

NICK-听听听听听听听听听听听听听 Thank you so much.

[Clarion music plays]

NIKKI-听听听听听听听听听听听听 That beautiful music is called Soaring Sparks by Michael Betteridge, and it鈥檚 being played on a clarion. Now, a clarion is a musical instrument which is about to break open the music scene like no other. The clarion it鈥檚 a fully inclusive instrument, anyone can play it because it can hook up to assistive technology, a bit like the Eyegaze which enables people who can鈥檛 speak in a traditional way to use their eyes. And now the Associated Board of the Royal School of Music has recognised its potential, and similar to more traditional instruments like the piano and the violin and all the wind instruments and everything is going to be offering what they call open assessments to give players feedback on their playing from 2024 that鈥檚 going to happen. Now, this will help legitimise the clarion as an instrument which takes skills and a lot of practise to play. But there鈥檚 another dilemma, I find this fascinating, the clarion is driven by a computer, which means it can imitate any instrument it likes. But the designer behind it wants to give it its own unique sound to make the clarion in demand. Now, the question is: what should it sound like? We are joined now by Barry Farrimond-Chuong, one of the people who designed the instrument, and he also runs Open Up Music, which is an organisation which runs inclusive orchestras. Thank you so much for coming on.

BARRY-听听听听听听听听听 An absolute pleasure.

EMMA-听听听听听听听听听听 What does it look like, Barry?

BARRY-听听听听听听听听听 It鈥檚 a piece of software, that鈥檚 the first thing to say. But it鈥檚 a musical instrument more than it鈥檚 a piece of software. I mean, it would be like describing a violin as a piece of wood. That鈥檚 just what this musical instrument happens to be made of. And what you look at when you鈥檙e on the screen, when the clarion pops up, you tend to see some colourful shapes, either circles or squares, and there can be one shape that鈥檚 covering the whole screen or there could be tens of shapes that are dotted all over the place. And they can be lots of different colours and they can be different sizes. Each of those shapes represents a note. Now, this is really important that you can add notes and remove them. You can鈥檛 really do that with a traditional musical instrument. But it's super important if you鈥檙e trying to play a musical instrument, say, with your eyes. Imagine how complicated a piano interface is and how many notes there are on there, and if you鈥檙e trying to hit that C sharp how difficult that is.

NIKKI-听听听听听听听听听听听听 It鈥檚 so clever. What is it that made you come up with this idea? What was the thought process behind it, Barry?

BARRY-听听听听听听听听听 So, we were doing a programme 鈥� this was over ten years ago 鈥� a research and development programme with Cardiff Metropolitan University, it was called Listening Aloud. And the whole idea was that we were going to go into a school and work alongside young disabled people and teachers and music leaders to create musical instrument prototypes that could be accessible. Because if you think about it most musical instruments require two hands and ten very dextrous fingers to play them. And for a lot of people that can鈥檛 access those musical instruments, well, they鈥檙e disabled by those musical instruments.

NIKKI-听听听听听听听听听听听听 Oh, a very social model, Barry. Tick.

BARRY-听听听听听听听听听 Very social model, yeah exactly. It鈥檚 an instrument that鈥檚 taken a decade to develop and now it鈥檚 being played by hundreds of young people all over the country.

NIKKI-听听听听听听听听听听听听 You know one of my biggest regrets was, I used to play the piano, I got to grade 7, but then I stopped playing for a period of time and now my fingers aren鈥檛 good enough to play anymore. I just should have kept them going, you know. I recognise the importance of having an accessible instrument like the clarion.

BARRY-听听听听听听听听听 It鈥檚 not saying that there鈥檚 not still a long way to go. We called it the clarion on purpose, because the clarion is actually like a medieval musical instrument. It鈥檚 like a really old one that people don鈥檛 play anymore. And what we wanted to do was make a statement to say yes, this instrument鈥檚 amazing and sounds very futuristic, you can play it with your eyes and it can sound like anything; but actually it鈥檚 a very early musical instrument as well. What we hope is that in 200 years鈥� time that there will be a new version of that clarion that鈥檚 so different, so markedly different and so embedded in our musical culture that they鈥檒l be looking back at what we created going, wow look at that thing, [laughs] it鈥檚 moved on so far.

NIKKI-听听听听听听听听听听听听 Yeah, the early work. This idea as well, Barry, about the sound and what sound you鈥檙e going to give it, my goodness that is a big question, isn鈥檛 it?

BARRY-听听听听听听听听听 Yeah, it is. And it鈥檚 not a question that I can answer or should be able to answer really. But what we want to do is make a very considered effort to design a sound, alongside clarion musicians: so what do they want it to sound like. Working alongside composers like Michael Betteridge and saying, what do you want it to sound like. And working alongside professional orchestras to say, what do you need. Because the ultimate dream, like the big picture is that if the clarion has its own sound composers can write pieces of music that require clarions.

NIKKI-听听听听听听听听听听听听 Exactly!

BARRY-听听听听听听听听听 And then orchestras will want to play it. And then that creates employment opportunities for clarion players.

NIKKI-听听听听听听听听听听听听 Earlier Emma spoke with Alessandro Vazzana, who has played the clarion of the past five years, and is part of the National Open Youth Orchestra. Now, Alessandro is considered one of the best players around, and his mum Anne is also part of that chat and describes herself as a music enabler:

ANNE-听听听听听听听听听听听听 He is an electric wheelchair user. He also has Fragile X syndrome, which is both a learning disability and can impact communication, but obviously not musical ability.

EMMA-听听听听听听听听听听 Alessandro, why did you want to learn the clarion?

ALESSANDRO-听 So I could play music.

ANNE-听听听听听听听听听听听听 Alessandro鈥檚 ability to play with his hands has decreased over time.

ALESSANDRO-听 Without my hands.

ANNE-听听听听听听听听听听听听 That鈥檚 right. And whilst he鈥檚 played the piano and guitar and drums and various things in the past, he was losing that ability to play the musical instrument to his ability to play music in itself. The clarion has given Alessandro the ability to reach his potential and play to a high standard.

EMMA-听听听听听听听听听听 Fabulous. Alessandro, what do you enjoy about the clarion?

ALESSANDRO-听 Playing great music with others.

EMMA-听听听听听听听听听听 And you鈥檝e played in some impressive concerns. Can you tell me about some of the performances that you were involved with?

ALESSANDRO-听 In the Barbican, Bristol, Bournemouth and Birmingham, NOY in 2022.

ANNE-听听听听听听听听听听听听 With the National Open Youth Orchestra, the Bournemouth Symphony Orchestra last week playing.

ALESSANDRO-听 With the Bournemouth Symphony.

ANNE-听听听听听听听听听听听听 With the whole Bournemouth Symphony Orchestra plus other related organisations. So, there were about 60 to 70 musicians playing.

EMMA-听听听听听听听听听听 Wow! So, Alessandro what would you like the clarion to sound like?

ALESSANDRO-听 Great.

EMMA-听听听听听听听听听听 [Laughs]

ANNE-听听听听听听听听听听听听 We use quite a lot either strings in some of the鈥�

ALESSANDRO-听 Strings.

ANNE-听听听听听听听听听听听听 鈥lassical and orchestral pieces. But when he does solo we quite often use wind, say like clarinet.

ALESSANDRO-听 Wind, clarinet or flute.

EMMA-听听听听听听听听听听听听 It was such a pleasure to talk to Alessandro and hear his passion, with help from his mum, Anne.

听听听听听听听听听听听听听听听听听听听听听听听听听 Barry, what was it like working with Alessandro?

BARRY-听听听听听听听听听听听 I mean, Alessandro is pushing the instrument right up to its limit, which is so exciting.

EMMA-听听听听听听听听听听听听 But we all know about the grading for piano and violin etc. But the Associated Board鈥檚 open assessment of the clarion starting next year that鈥檚 going to be a bit different, isn鈥檛 it, Barry?

BARRY-听听听听听听听听听听听 The grade system, I mean it鈥檚 typically for musical instruments that have a deep-rooted heritage, that go back hundreds of years, the musical repertoire, they鈥檝e got loads of music that鈥檚 been written for them that you can pick from, and they鈥檝e got very well-established ways of being taught and being played that go back for generations. By contrast the clarion it鈥檚 a baby. Open music assessment isn鈥檛 comparable to the kind of traditional grade 1, grade 2, grade 3 etc. It鈥檚 more about a musician being able to play an instrument like the clarion, be assessed, have feedback given to them to help them progress in their musicianship; but without progressing through the grades at this stage.

NIKKI-听听听听听听听听听听听听听 So, how do people get hold of the clarion if they want to play it then, Barry?

BARRY-听听听听听听听听听听听 At the moment it鈥檚 available through our programmes; but next year in 2024 we鈥檙e going to be making it available to everyone. The best way to find out about that would be to go to the website, theclarion.uk. join up to the mailing list and we鈥檒l let you know when the clarion is going to be available.

NIKKI-听听听听听听听听听听听听听 And what鈥檚 the price range on it?

BARRY-听听听听听听听听听听听 At the moment we鈥檙e still trying to work that out, but we鈥檙e keeping the price as low as we possibly can because we don鈥檛 want price to be another barrier that people need to experience.

NIKKI-听听听听听听听听听听听听听 Thank you so much, Barry. Honestly, it鈥檚 been a real pleasure to speak to you.

BARRY-听听听听听听听听听听听 That was really fun. Thank you so much.

NIKKI-听听听听听听听听听听听听听 Sounds great everything that you鈥檙e doing. It鈥檚 right up my street. And thank you Alessandro and Anne for joining us too. If this has got you excited and you want to find out more about the clarion and the assessments then check out Open Up Music and ABRSM. Thank you also to Radio 3 Music Matters鈥� team who worked on this story with us. It鈥檚 been a great collaboration. You can find their episode on adaptive instruments on 麻豆社 Sounds.

JINGLE-听听听听听听听听听听听 Access All with Nikki Fox.

NIKKI-听听听听听听听听听听听听听 Well, it鈥檚 probably fair to say ADHD is still often seen as something that children or teenage boys have; but more recently we鈥檝e been hearing about women getting a late diagnosis of ADHD and autism. Neurodivergent activist and author, Ellie Middleton, has a brand new book out all about this, and about being diagnosed at the age of 24. And she is with us now. Ellie!

ELLIE-听听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听 We are very excited. Emma and I have both being listening to your dulcet tones.

ELLIE-听听听听听听听听听听听听听听 You鈥檒l be sick of hearing my voice already then before we even start [laughs]!

EMMA-听听听听听听听听听听听听 No, never.

NIKKI-听听听听听听听听听听听听听 It鈥檚 a nice voice, Ellie. Well, let鈥檚 get straight to the point: what does ADHD look like in women and girls?

ELLIE-听听听听听听听听听听听听听听 I think this is the big question as to why it鈥檚 been missed for such a long time, because the way in which we鈥檙e socialised as women and girls we鈥檙e told to behave, to sit still, to be polite, which means if we鈥檙e not diagnosed at a really young age that way that we鈥檙e trained to be, I guess, as women and girls affects the way that we鈥檙e masking our neurodivergence, whatever that might be. So, I think if you think of little boys and they鈥檒l be a bit boisterous and they鈥檒l be a bit naughty; whereas with the girls I think a lot of it is more internal. So, for me my hyperactively, I鈥檓 not outwardly running around in circles, but my brain is just going round in circles at 100 miles an hour all the time. So, that鈥檚 something that someone wouldn鈥檛 be able to see from the outside but is very much still happening just internally.

NIKKI-听听听听听听听听听听听听听 What I love about the book, you explain things beautifully, I mean even I鈥檝e learnt stuff. I鈥檝e been in this job as a disability correspondent for years now, but I鈥檝e learnt things from you about language. So, thank you for that; I鈥檒l script better. But you also tell us a little bit about yourself. It sounds to me like you went from dropping out of school, and then becoming an author, in the space of two years. OMG.

ELLIE-听听听听听听听听听听听听听听 Yeah, it almost is like the poster girl of what can happen when you get the answers as to how your brain works, because it is literally like the perfect story [laughs] basically of dropping out of school, not being able to hold down a job. Because I was in this cycle of really struggling with my mental health for me it was like well, I鈥檓 never going to be able to climb the career ladder or do anything of any importance because I just get overwhelmed so easily and I always have these really bad phases of anxiety and depression. Whereas now understanding what was causing those cycles of bad mental health, which was basically the clashing of ADHD wanting to do everything all of the time, and autism, having a very small battery and needing a lot more rest than most people, and having that understanding of how my brain works I can prevent those crashes in the same way, and I can work in a way that suits me better. Learning the way that I work has changed everything for me really.

NIKKI-听听听听听听听听听听听听听 That鈥檚 amazing. And what did it mean to you to find out actually, this is why I felt the way I felt?

ELLIE-听听听听听听听听听听听听听听 First of all it was like that absolute validation and relief and understanding of just finally I know what鈥檚 going on and it all makes sense now. It鈥檚 like realising that actually every single day for the rest of my life I鈥檓 going to have to carefully manage my energy, because if I don鈥檛 then I get burnt out. So, it鈥檚 like coming to terms with the ways that you are disabled I think by your disability is a big thing that people need the space to process. I think there was a lot of forgiveness for myself. When you grow up being told or feeling like you can鈥檛 do everything the way that everyone else can and you just can鈥檛 seem to hold down a job and you seem to not be able to hold friendships, although you in your heart of hearts know that you鈥檙e not a bad person, it鈥檚 kind of inevitable that the more you鈥檙e told that the more it鈥檚 going to sink in. And especially socially I had such an awful time, never fit in in a friendship group anywhere and just had big drama and fallouts and stuff. And I think I was just like, I must be a bad person because I鈥檓 the common denominator here. And then I guess having that explanation of like, oh no, I鈥檓 not bad, I鈥檓 just different. And I was just going undiagnosed with these two disabilities my whole entire life. So, I was actually doing a really good job [laughs] of getting as far as I did.

EMMA-听听听听听听听听听听听听 What changed with the social side of things? What do you do differently now?

ELLIE-听听听听听听听听听听听听听听 Finding my people first of all. So, through a lot of my work online I鈥檝e found friends who are also autistic and ADHD, which it solves a lot of issues because I don鈥檛 have to explain myself if I go quiet or I don鈥檛 have to explain why I might be blunt and to the point. They鈥檙e the same, they understand. But also having that information for the friends that I do still have from beforehand they have that understanding as well of like, ah okay, if Ellie doesn鈥檛 text me back for two weeks it鈥檚 not that she doesn鈥檛 like me anymore or that she doesn鈥檛 care about me, it鈥檚 that she might be overwhelmed or she might have a lot on her plate right now.

EMMA-听听听听听听听听听听听听 Yeah. And what about work wise? You said that you weren鈥檛 able to hold down a job before your diagnosis; what鈥檚 changed in terms of work?

ELLIE-听听听听听听听听听听听听听听 Yeah, I think again it鈥檚 just that knowledge of learning how to work with my brain rather than against it. So, before I was doing either long hours in an office, which was just draining for me of, like, that sensory input all the time and making small talk all the time. I work from home a lot now because it just takes away from all that extra stuff. And I think I鈥檝e obviously been really lucky that I鈥檝e been able to be self-employed so I can give myself that flexibility. But I think another thing that I see looking back is because I didn鈥檛 know otherwise I thought everyone was just as drained as I was after an eight-hour day in the office. So, I would finish work, I would go home, I would basically just have to lie in a dark room and scroll, and I鈥檇 struggle to be able to have the energy to eat or to shower or anything like that. Every drop of energy had been taken from me from that day at work. But I guess I didn鈥檛 see anyone else when they finished work either, so I didn鈥檛 know that everybody wasn鈥檛 just as drained as I was. So, now I have that knowledge of oh, I鈥檓 supposed to have some battery left, so I won鈥檛 use all of my energy at work; I鈥檒l work in shorter sprints or I鈥檒l make sure that I鈥檓 going for a walk in between the day. And just being able to be a bit more flexible with it I think is a massive benefit of being self-employed.

NIKKI-听听听听听听听听听听听听听 In your book, Ellie, you say that looking normal 鈥� whatever that is 鈥� looking pretty even, made people believe that there wasn鈥檛 anything wrong with you. And you call that pretty privilege. Can you tell me about that?

ELLIE-听听听听听听听听听听听听听听 Yeah. So, I guess pretty privilege is this idea of all the other types of privileges that people have, so like white privilege or able-bodied privilege kind of combined together to have this extra privilege. So, having that would mean that you have an easier ride in life or face less barriers. So, I think it鈥檚 very much a privilege in most contexts. However, in the context of getting access to support it almost is a hindrance, because in one way it's still a privilege because it maybe stopped me from being ostracised as much or stopped me from standing out as much because I looked 鈥渘ormal鈥�.

NIKKI-听听听听听听听听听听听听听 Beautiful I think you mean.

ELLIE-听听听听听听听听听听听听听听 [Laughs] thank you. But then because of that that kind of stopped people from realising that there was anything different about me because I sailed through social situations that I didn鈥檛 actually have the skills to navigate, just because I looked more like I belonged there. So, I guess if I鈥檇 have been more visibly different, you kind of picture the kid stood at the corner of the playground with no friends, and at that point someone would step in and say, well what鈥檚 going on here, there鈥檚 something, they鈥檙e being ostracised, they鈥檙e being left out, they鈥檙e not making friends, let鈥檚 look into what鈥檚 going on. Whereas when I didn鈥檛 look as visibly different and I was able to mask, and my support needs were quite low, it was always put down to oh, well all teenage girls have troubles with friends, and all teenage girls have a rough time at high school. Whereas I had a social and communication disability.

NIKKI-听听听听听听听听听听听听听 There are consequences, aren鈥檛 there Ellie, to not getting an early diagnosis? And you talk about the lost generation in your book.

ELLIE-听听听听听听听听听听听听听听 Yeah. Up until now a lot of the research that鈥檚 been done to shape the diagnostic criteria of both ADHD and autism is all based on young white cis boys. So, for example one of the questions that I had to answer, that I use in the book as an example, is I collect information about categories of things, for example birds, cars, trains and planes. So, for me that was like no, I don鈥檛 collect information about any of those things; but that鈥檚 mostly because of the fact that I鈥檓 a 24-year old woman and not an eight-year old boy. So, I think it鈥檚 just these very small and simple biases in the diagnostic criteria that mean that we鈥檙e not accounting for the experiences of women, of people marginalised by gender, people of colour, of adults. That ties into our understanding of oh, well it must be only young white boys that have autism or have ADHD, so then we鈥檙e not looking for it in girls, in people of colour. So, there鈥檚 kind of all of these people that have gone their entire life without a diagnosis. And then I think a lot of us are getting to a certain age when we鈥檙e looking into things for ourselves and being like, actually there鈥檚 something else going on here.

NIKKI-听听听听听听听听听听听听听 Yeah.

ELLIE-听听听听听听听听听听听听听听 Especially with the internet that鈥檚 allowing us to see through social media different people鈥檚 experiences that are similar to ours and giving us access to more information that we didn鈥檛 previously have access to.

NIKKI-听听听听听听听听听听听听听 Going back a bit, just quickly, to collecting things, does that show up in you in another way?

ELLIE-听听听听听听听听听听听听听听 So, for me my special interests 鈥� which actually I do think played into why I went undiagnosed as well, even as an adult 鈥� I like football and I like indie music. And I think people that like those things tend to have quite an intense love for them as well. My intense level of interest wasn鈥檛 seen as abnormal because a lot of the people that like that sort of thing [laughs] are equally intense about it. But because it鈥檚 not the same stereotypical interest of, like, the London Underground or trains or whatever it is that we think of when we think of these young boys, no one considers it to be a special interest; when actually it is.

NIKKI-听听听听听听听听听听听听听 It鈥檚 been so lovely chatting to you. Thank you so much. If you want to have a read of Ellie鈥檚 book it is brilliant. It鈥檚 called Unmasked: the Ultimate Guide to ADHD, Autism and Neurodivergence. And it is out now.

听听听听听听听听听听听听听听听听听听听听听听听听听 Now, that is the end of our programme for this week. We鈥檙e back next week, and we鈥檙e here all year round. All year round, my goodness. Now, send us a message and tell us what you like or what you want to hear more of: accessall@bbc.co.uk is our address. Or you can find us on X, formerly known as Twitter.

EMMA-听听听听听听听听听听听听 We鈥檙e all about disability and mental health, so if you know someone who might particularly appreciate listening to us then please do tell them. Share us on your own social media as well, why don鈥檛 you?

NIKKI-听听听听听听听听听听听听听 Until next time, goodbye people.

EMMA-听听听听听听听听听听听听 Goodbye.

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