23rd July 2024
bbc.co.uk/accessall
Access All – episode 114
Presented by Paul Carter
PAUL- Hello,
I’m Paul Carter and this is Access All. For those that don’t know me, I’m a
technology journalist here at the BBC. You can frequently see me on the
programme Click.
SIRI- Hey
Paul, it’s Siri, your favourite AI assistant. I’ve got a few questions for you.
PAUL- Okay.
Hey Siri, what have you got for me?
SIRI- Why
have you switched to Access All?
PAUL- That’s
a very good question. So, Emma, who usually hosts this programme, is taking a
very well-earned break, so for the next two weeks unfortunately Siri you’re
going to have to listen to me instead.
SIRI- Happy
holidays, Emma. Next question is: what is your favourite bit of accessible
technology?
PAUL- Excellent
question. So, I was born without any arms and legs, so selfishly I have an
interest in prosthetics. And I’d say my favourite thing that I’ve seen
recently, I was lucky enough to go to San Francisco and test out a
mind-controlled bionic arm. You operate the controls for it, but instead of
actually wearing the arm you’re operating it on a screen. So, you can do all of
the hand movements, the wrist movements, the elbow movements, everything like
that; things which are obviously completely alien movements to me. To be able
to do that on a real arm was quite mind-bending.
SIRI- Final
question: what’s on this episode?
PAUL- Well,
I’m very glad you asked. We’ve got some great stuff for you this week. We have
a fascinating conversation about ADHD medication, and an interview with the
bestselling thriller writer, Jack Jordan.
SIRI- Let’s
get on with the show.
PAUL- Indeed,
let’s do it.
MUSIC- Theme
music.
PAUL- Hello,
I’m Paul Carter and this is Access All, the BBC podcast all about disability
and mental health. If this is your first time listening to us hit subscribe,
tell your pals all and get in touch. We’re @BBCAccessAll on socials,
our email address is accessall@bbc.co.uk,
and you can also send us some voice notes on WhatsApp, we’re 0330 123 9480.
Also stay tuned until the end of the show when we’ve got some exciting news to
reveal. Ooh. Anyway that’s enough of me jabbering on; let’s get going.
Getting
the right drugs to manage ADHD can be difficult, especially when there is a
global shortage of medication. Some Access All listeners have told us they’ve been
so desperate when their prescriptions cannot be fulfilled they’ve turned to
unregulated products d online. In the last few weeks the UK’s
Advertising Standards Authority has banned a number of adverts claiming to cure
ADHD and autism, which have left people hundreds of pounds out of pocket.
ing me now is Nicky Baker from the Advertising Standards Authority, and
Professor Marios Adamou, consultant psychiatrist based in Southwest Yorkshire.
Hello to you both.
NICKY- Hello.
MARIOS- Hello.
PAUL- We’ll
come to you both shortly. I’ve also got Amy Barber on the line. Hello Amy.
AMY- Hello.
PAUL- Now,
you bought an unlicensed product online for your ADHD. Can you tell me what it
was that led you to do that?
AMY- Before
I was diagnosed with ADHD I always felt like there was something wrong with me.
And then when I was diagnosed and medicated it completely changed my life and I
finally felt like I wasn’t just someone who was defective. And then when I then
couldn’t access medication, and I’d been stable on it for six months, it was
the best six months of my life, it suddenly just was gone and I had no way to
access it. I’d been given different replacement drugs but none of them worked
the same. I needed something and I was completely desperate.
PAUL- Was
this the point that you then went online to try and source an alternative?
AMY- After
the methylphenidate hadn’t worked I went on and tried to source an alternative,
and I used that alternative for about a month and a half. And then I ended up ing
my prescriber again because it didn’t work. I was just so frustrated. And I
felt a bit embarrassed as well because it wouldn’t be the first time, and it
probably won’t be the last, where I’ve invested in something because I’ve just
been desperate to try and be normal and be like a successful person, and I
really was not in a good place.
PAUL- I
think people can relate to that. But how did you go about choosing the
alternative that you went for? What kind of research did you do?
AMY- So,
I looked at reviews and things from other people who have tried it who also
have ADHD and claimed that it had been like a wonder drug for them. I looked at
what was actually in it, which essentially was just like multivitamins and a
couple of other things that are supposed to be good supplements for ADHD. So, I
was like, I might as well just give it a shot.
PAUL- How
much did you pay for it?
AMY- I
paid £60.
PAUL- That’s
not a small sum of money, is it?
AMY- No,
definitely not.
PAUL- And
did it work? I guess that’s the big question.
AMY- No,
no difference whatsoever.
PAUL- And
how did you feel after you’d spent £60 on this supplement that ultimately
didn’t do anything for you?
AMY- I
felt disheartened, and at the time I felt a lot worse because I then didn’t
have my medication to stop me from having a big emotional reaction to this. And
it felt like another instance in which ADHD had ruined my life and that I’d
tried to fix it yet again and it just hadn’t worked and I was back at square
one, and I was down money. I felt like I was always trying to find a solution
and nothing ever really worked until I’d been on medication.
PAUL- Nicky,
you’re from the ASA which has banned these products being d. Does
Amy’s story sound familiar to you?
NICKY- It
really does, and this is why it’s part of the ASA’s stated commitment to
protect vulnerable audiences and people like Amy. And so indeed over the past
few weeks we’ve banned a number of online ads, including Facebook ads, for food
supplements. And most recently we’ve banned ads for a supplement which made
claims to be able to treat or even “cure” development language disorder, autism
and ADHD. And this particular food supplement was made by a company called
Spectrum Awakening, and their advertising depicted a very young boy who
apparently had very limited speech, but within a week of taking the Spectrum
Awakening food supplement he was suddenly speaking in full sentences. And so we
considered that the depiction of a child with developmental language disorder,
or DLD, and the crediting of that supplement with the sudden improvement in
speech of that child was likely to be interpreted by the average consumer as a
claim to treat or cure that condition. We are very much aware that autism and
ADHD are not diseases or conditions which can be cured, or developmental
disorders. But to see some rs claiming to treat or cure those
disorders is a really serious concern for us.
PAUL- Have
you any idea of the scale of this problem? You can’t monitor every advert
that’s generated online. How does the ASA go about keeping across all of this
stuff?
NICKY- These
recent rulings form part of a much wider piece of proactive project work that
we’ve been undertaking at the ASA in which we’re harnessing the power of artificial
intelligence and employing cutting-edge technology, we call it our active ad
monitoring system, to detect ads at huge scale. And we’re talking millions of
ads per month. And then a subset of those ads are then flagged as being
relevant for review by human specialists. So, it’s not all totally automated,
there’s always human oversight, but it does make our work much more efficient
and effective. And in of the problem and the scale of the problem of these
types of ads our proactive monitoring work showed that there was enough of a
problem to warrant some regulatory intervention from the ASA.
PAUL- Thanks
Nicky. I will come back to you in just a second. But as you mentioned, Spectrum
Awakening is one of the companies which had their advertising banned by the
ASA. It is a different company to the one Amy used. Spectrum Awakening
d a product on Facebook called Power & Focus, which claimed it was
a, quote, natural, nutritional supplement for autism and ADHD. We reached out
to Spectrum Awakening and received a statement from Dr Jared Skowron who runs
the company. He told us his product shouldn’t have been d as helping
ADHD, but he does claim it cures autism. Now, Dr Skowron told us:
‘The
actions of the ASA, while having the right intentions to protect UK citizens
from misleading information, has not been sufficient enough to thoroughly
investigate autism science.’
So,
Nicky, you heard the statement there, how would the ASA respond to accusations
of it not leaning into the science when making its decisions?
NICKY- It
sounds to me like a rather cynical copout on the part of Spectrum Awakening.
And we’ve also in the past in the course of our work spoken to the National
Autistic Society who’ve told us that often people feel that being autistic is a
fundamental aspect of their identity. And actually anyone claiming to “cure”
something that is arguably incurable and something that’s part of the fibre and
fabric of an individual’s personality really needs to stop.
PAUL- Thanks
ever so much, Nicky. Nicky Baker there from the Advertising Standards
Authority. We also received this voice note from listener, Emma, who has chosen
natural remedies rather than conventional medicines to treat her ADHD:
EMMA- So,
I’ve decided to kind of use myself as a bit of a guinea pig, human guinea pig
to try out alternative ways to manage ADHD. So far I’ve found the Lion’s Mane
has been really helping me. I’ve done lots of research online, just by reading,
like, a lot about different ways to manage it, and have found that Lion’s Mane
comes up quite highly.
PAUL- Lion’s
Mane is a form of mushroom. Listening across all of this is clinical
psychiatrist Professor Marios Adamou. Professor, thank you for waiting. How are
you feeling after hearing the lengths people are going to to manage their
condition?
MARIOS- There
is licensed treatments; Amy has benefited from them. And she deserves to
maintain that benefit. If this medication is not available people will try
anything out of, well, desperation I would say. And this is not only common in
ADHD, it’s found in many other conditions. And there are all sorts of remedies
and promises.
PAUL- ADHD
UK has told us that the shortage of medication, as you were alluding to there,
is driving people to seek out alternative treatments. I mean, is that something
that you’re seeing with your patients that’s happening a lot due to the supply
issue?
MARIOS- I
would expect that if people find something that they believe helps then they’ll
try. I think the perspective of the advertising agency is to protect consumers.
I would on this occasion comment that their guidance which is also protecting
patients as well as consumers.
PAUL- And
we heard from Emma just now who mentioned Lion’s Mane, which is a herbal
remedy. There’s a lot of chat online about it. Is there actually any basis for
it being able to help with ADHD?
MARIOS- People
have this idea that because they’re herbal remedies then they are safe. But we
don’t know that because we haven’t studied it. So, I couldn’t come out and say
that there is no herbal remedy in the whole world that wouldn’t be helpful in
ADHD, but I can say that there haven’t been many, or any as far as I , herbal
remedies who went through the robust scientific methodology in assessing if
they would work. So, as a professional I cannot recommend any of them. But if
people want to have a try with their hard-earned money and feel it works then
that’s up to them.
PAUL- But
obviously people are desperate and they’re turning to these medications because
of the shortage that we’re seeing. What advice would you give to someone who’s
struggling to find the drugs they’ve been prescribed to manage their ADHD?
MARIOS- The
main point is conversations with their prescriber. We have a guidance around
several options and substitutions that are appropriate for people. And in
fairness for most of the people that we see they are successful. Also for some
we say maybe they can have some medication breaks so they can save up the right
dose and use it when they need it. Also we advise on occasions lowering the
dose.
PAUL- Amy,
I just want to come back to you. I mean, you’ve heard all of that advice, does
any of that ring true to you? Is that reflected in your experiences?
AMY- I
think some of it is, maybe not all, because if you’re still in that stage where
you’ve had, like, a taste of something good but you’re not yet in a healthy
routine and you don’t yet have accommodations in your life that can you
to have ADHD in an unmedicated way then that would be really difficult to just
come off it for a month.
PAUL- We
also reached out to the Department of Health about this story and they told us
the following:
‘We
are aware of global supply issues affecting ADHD medications, and are acting to
help mitigate risks to patients while these issues are addressed. We have
provided comprehensive guidance to healthcare professionals about how to manage
and advise patients while there is disruption to supply, and advise any patient
with concerns to speak to their clinician.’
We’ve
heard lots there about alternatives to helping ADHD. There’s further
information and on the BBC’s Action Line. And it’s always advised to
speak to your GP when making decisions around your ADHD. Thanks to everyone who
spoke to us about this. Thanks again to Amy, to Nicky and to Marios. Please get
in touch if this story relates to something you’re going through at the moment.
We’re @BBCAccessAll on socials, our email address is accessall@bbc.co.uk, and our WhatsApp is
0330 1230 9480.
Now,
don’t worry, Emma hasn’t left you completely in the lurch. Before she signed
off for her summer break she interviewed the bestselling author Jack Jordan.
Enjoy:
EMMA- My
next guest is a number one bestselling author of some seriously intense
thrillers. He wrote his first book at age 17 while living with agoraphobia, and
then managed to self-publish two bestselling e-books by the time he was 24.
Then he went on to find a publisher and sell hundreds of thousands of books.
His book in 2023, Conviction, made it into my blindy talking book library,
which is surely a measure of success. And the new book, Redemption, is out now.
And he’s here to tell me all about it. It is of course Jack Jordan.
JACK- Oh
thank you so much for having me. I’ve been really looking forward to this.
EMMA- So,
go on then, go on, tell me about the new book.
JACK- So,
Redemption, I’m known for my moral dilemmas, and with this one I wanted it to
pack an emotional punch. Redemption is the story of married couple Evelyn and
Tobias who go on a road trip to avenge the death of their son who was killed in
a hit and run 11 years before, as the man who caused it had just been released
from prison. However, it’s Evelyn who is hellbent on revenge, and her husband
is desperate to stop her, to save her from herself, even if it means protecting
the man who killed their son.
EMMA- Oh,
so many layers. Is this very typical of the sort of book you write?
JACK- Yeah.
So, I think with my books, in particular the last three – I’m currently writing
my ninth at the moment and Redemption is my eighth – I realised that I really
wanted to create a story that shows the struggles and the moral dilemmas that
we have in everyday life and how the readers can relate to that. But then I
inject it with steroids and make it 20 times worse [laughs].
EMMA- And
really nightmary and scary. I don’t know if I’ve been able to sleep the last
couple of days.
JACK- Oh,
well I hope you get a really good sleep soon.
EMMA- [Laughs]
JACK- I
apologise if that was my fault. But I think I’ve always used my writing as a
vehicle to express my emotions. People meet me and they go, ‘Where do all these
dark ideas come from?’ and I think I’ve had a bit of a challenging life and I
went through some dark things, and I started writing to try and exude some of
that and understand that. So, I think I always lean to the darker side of
stories and the struggles we go through because I can relate to that.
EMMA- You’ve
mentioned your life a little bit there; when in that life did you start writing
books and how did that get going?
JACK- I
mean, to start off with I think always the question I get was, ‘You must have
had an amazing education. You must have gone to university’. That wasn’t the
case for me; I actually had quite a poor education.
EMMA- What
do you mean by that?
JACK- I
had a particularly bad time in school for being gay. And it was a bit
relentless to be honest, so I decided at 14 to remove myself from the system.
But doing that I then had to go to a different school, it was essentially for
kids who couldn’t be in mainstream school. So, downstairs were the naughty kids
who were excluded, and then upstairs were the kids who had to be there for
their wellbeing. And I was up there. So, I would be picked up by a teacher in
their car in the morning, driven to this place, escorted upstairs and put
behind a locked door. And I would have two hours of lessons a day.
EMMA- Why
were you put behind a locked door?
JACK- For
protection. The class I was in because we were particularly vulnerable. Also
putting two different groups of kids who were there for different reasons might
not have gelled well. So, it was quite a volatile place to be, so that really
did affect my education. So, I refused to go there as well. So, the only
lessons I could have for my last year of school was an hour a day when my mum could
come home from work and be there when the teacher was there for her lunch hour
to complete my GCSEs, which meant I could only do four. And I insisted six
weeks before the exam that they let me do English literature, and I got an A.
EMMA- Wow,
well done!
JACK- Thank
you. I think I’ve always been a champion for what I deserve, and that
resilience there was there from a very young age, and that’s definitely served
me in my career going forward.
EMMA- Yeah.
Now, I did say in the introduction that you wrote your first book at 17 while
living with agoraphobia. After your GCSEs how did that become part of your
life?
JACK- I
would say the first 20 years of my life were a bit of a battlefield in of
traumas. It was a situation that I couldn’t escape, so when it came to being
out of the education system and trying to find who I was and find my new life I
was a bit rebellious and ran away. And so I was away for about six months, and
unfortunately didn’t have the life skills to protect myself properly and things
like that, and went through significant trauma. So, when I returned home I was
just a shell of who I was.
EMMA- Where
did you go? What did you do for the six months?
JACK- I
won’t go into detail, but for so long I’d been stuck and caged. And I think I
saw that as a sense of freedom but probably what I shouldn’t have been doing.
EMMA- Okay.
So, you came home?
JACK- Yes,
I came home, back to safety, back to my loving single mum and my Nan who raised
me. But unfortunately came home and I had a lot to process, a lot of anxiety, a
lot of panic attacks. And I soon realised that the anxiety was so bad that I no
longer felt safe to leave my home, and I was agoraphobic for a year.
EMMA- And
what did that feel like?
JACK- It’s
a bit like a prison. This time it was the limitations that my brain was given
me, in a form of protection really: anxiety is there to protect us. But the
things I’d gone through meant that I was hypervigilant. That meant that all my
fears were extremely heightened. It’s really lonely, or not many people can
relate to it. And you also can’t sleep because you’re not exerting energy, so I
was an insomniac. I knew I had agoraphobia and how bad it was when I was
walking down my staircase and at the same time the postman put a letter through
the letterbox and I had a massive panic attack.
EMMA- What
happened so that you could start moving, like, even to open the letterbox?
JACK- What
saved me was my writing. I had this idea rattling around in my head, I thought
right, I’m going to get this out. I had a BlackBerry, if you those?
EMMA- Oh
my goodness!
JACK- Yeah
[laughs]. And it was about 5 in the morning because I couldn’t sleep, and this
idea would just not leave me alone, so I typed a little short story on my BlackBerry
and finally went to sleep. And then the next day I thought, I’ll write a little
bit more, and then the day after that, I’ll write a little bit more. And then
six months later I had tricked myself into writing 100,000 word novel. And when
I wrote the end I realised that this was what I was always meant to do, and it
was going to get me out of this situation.
EMMA- A
massive relief I imagine.
JACK- Massive,
and a great way to connect with the outside world when I couldn’t, so I could
live vicariously through my characters. But then once I realised that this was
a path I wanted to take I thought well, I’m going to have to get out and experience
more of the world to be able to write about it.
EMMA- Yeah.
It’s fascinating to me though that you're writing in your house and you can’t
leave your house, but the types of books that you write invite nightmares into
your head and into your home, when that’s the only place you can be.
JACK- I
really do think with, or at least myself writing in the crime and thriller
genre, when you’re victims of crimes yourself you want to understand what has
happened to you, why it happened to you, how you’re going to get through that.
And so I think I wanted to write from the point of view of the person who’s in
that to see how they get out. And I think that was a cathartic process for me.
So, that’s become a lot of my inspiration, so I look inwards and I look at my
own limitations or my own pain or my own fears.
EMMA- How
have you been since? What do you do to kind of stay writing, stay going out?
JACK- It
really was desensitising myself to the fears. So, it would be going to the door
or going out into my garden. Then it would be going to pick something up from
the step, even if it was just like a flyer or something, I’d go and pick that
up. And then I’d walk out and just feel the sun on my skin. So, it was
self-exposure really. And tremendous amounts of therapy [laughs]. I’ve got a
phenomenal therapist who I still see to this day. And I think to be honest I
used my career, which I’ve realised now at the age of 31, so 15 years later
from when I was agoraphobic that I have been in fight or flight survival mode
ever since and only really itted to myself now. I’ve known I had it, I’ve
been diagnosed with it, but I did not accept it until now that I’ve had PTSD
for a very long time. I’ve done every coping mechanism you can imagine, the
good, the bad and the ugly. I think honestly writing this book, Redemption, has
saved my life.
EMMA- Wow.
JACK- So,
Redemption on the face of it is a crime thriller, so if you’re going on a beach
holiday you’re going to enjoy the tension of it, the cat and mouse chase. It’s
got all the aspects of a commercial thriller you’ll want. But I used it as the
creator to explore my own grief, explore my own trauma, explore my own emotions
with that. And I knew I was sharing a lot when I wrote it; I didn’t realise
quite how much until I listened back to the audio book, and it was only then
that I heard them talking back to me my trauma.
EMMA- Gosh.
JACK- I’m
getting shivers thinking about it. It was the most revelatory moment of my
life, and I realised it helped me accept my past, it helped me accept my PTSD
and it helped me to stop judging myself and stop harming myself through all of
these, quote unquote, coping mechanisms. Since exploring my past through
writing it’s freed me. And I think the most rewarding thing from this is the
reception the book has got, because I think when you write something so
personal you want to be accepted, you want people not to judge you for that.
And it’s under the guise of fiction, so people don’t know that they’re
effectively judging you. It’s been phenomenal, and it’s helped me have a sense
of self-acceptance that I never thought I’d get.
EMMA- Brilliant.
And you talked about barriers and you’ve written about a blind character,
you’ve written about a gay character, what would your advice be for writers in
a nutshell, Jack, particularly writers who have some extra barriers to get
through?
JACK- Know
what you deserve. You can often find when you’re from a marginalised community
you have to work very hard to get in the same room. I think we have such a
wealth of knowledge that we can share. We see the world differently, we
experience the world differently, and I think that really lends itself to
storytelling, but also allows readers to identify with a character. I think
everyone deserves to feel the representations of themselves in a book.
EMMA- Jack,
I’m being told we’ve absolutely run out of time. I genuinely could have talked
to you for an awful lot longer. And I’m hoping that you will come back and
speak to me again.
JACK- I
would love to.
EMMA- Jack
Jordan, thank you for ing me. And Redemption is out now.
PAUL- Thank
very much Emma for that interview with Jack. Now, it’s almost the end of the
show – I know, time flies – but as promised there’s one more exciting thing to
tell you. Drumroll please. Do we have drumrolls? I’m being told we do have
drumrolls. [Drumroll] Access All is hosting a live show at the Edinburgh
Festival Fringe, and you, yes you, can be part of the audience. Emma will be
hosting guests including award-winning comedians Dan Tiernan and Matt Ford, for
all sorts of fun, stories, and a bit where you get to ask the questions. The
show will be at Dynamic Earth on Friday 9th August at 3pm. And if you go to the
BBC’s Shows and Tours page you can get yourself some free tickets to come along
and watch. Sounds good. Okay, that’s it. Thanks to all my guests today. I’ve
had an absolute blast. It’s gone way too quickly. I’ll be back next week so I
look forward to speaking to you all again then. Thanks very much. Bye.
[Trailer for Reliable Sauce]
KIRSTY- Do
you want to know what’s going on in the world but you can’t really be bothered
to read the news?
JONELLE- Want
to understand what’s gone viral and what’s trending?
BOTH- Hey,
hey, hey!
KIRSTY-
me, Kirsty Grant.
JONELLE- And
me, Jonelle Awomoyi on our weekly podcast, Reliable Sauce.
KIRSTY- We’re
both journalists at BBC News.
JONELLE- 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- How
often do you think about the Roman Empire?
MALE- There
are weeks that it will come up in my brain more than once.
JONELLE- Expect
interviews with the hottest influencers and content creators.
KIRSTY- Jordan
Theresa, welcome along. Matt, s us now. Welcome to the Reliable Sauce
studio!
MATT- Thank
you for having me.
KIRSTY- Let’s
talk more about this with Catie Baser who’s in the studio with us.
CATIE- Hi.
KIRSTY- And
hand-picked experts to help us make sense of it all when we need them.
FEMALE- So,
the law is there, but we really need these social media companies to act.
FEMALE-
like this seem quite flippant, but of course they can be really serious.
KIRSTY- And
we will have a little giggle too
[laughter].
JONELLE- So,
please come and our spicy band.
KIRSTY- Listen
on BBC Sounds now.
