Latest / Thick No More / A Diagnosis Doesn't Define You | Ben Sutcliffe on Epilepsy, Purpose & Resilience

Transcript

A Diagnosis Doesn't Define You | Ben Sutcliffe on Epilepsy, Purpose & Resilience · Thick No More

0:00
Hello everyone, welcome again to think there more.
0:02
Today I have the privilege of being joined by Ben.
0:05
Ben's story is 1 of resilience, purpose, impact, who's diagnosed
0:10
with epilepsy as a child. So Ben knows first time what
0:13
it's like to navigate school, friendship, a life while
0:16
carrying a condition that often comes with misunderstanding and
0:19
stigma. But his story doesn't stop
0:21
there. Ben has gone on together
0:23
dedicate his career to Called Our Children, which is an
0:26
extraordinary charity that changes lives for children with
0:29
disabilities, facilities and their families across the UK.
0:32
Through his work, Ben brings hope, advocacy and practical
0:36
support to those who need it the most.
0:37
Today we're going to talk about his childhood experiences, the
0:40
people who made a difference and the mission that drives him on
0:43
today. Well, those we're also going to
0:45
be looking ahead at the future, Why Ben believes changing
0:48
schools and community matters more than ever.
0:50
This story is about challenge, purpose and also what it means
0:53
to be thick. No more.
0:54
Ben, welcome to the show. Thank you, Jay.
0:56
Yeah, it's great to be here and thanks for inviting me.
0:59
Now you're very, very. You're welcome.
1:00
So I'm I'm probably sure you know what the first question is
1:03
because I always ask it to everyone.
1:05
You fling a door open, my friend.
1:07
You walk through and every time that door opens, a theme tune
1:09
playing. What would your song be and why?
1:11
This is such a difficult question because music means so
1:15
much to me and it's very hard to pick one.
1:19
But what I'd what I ended up with was 10 story love song by
1:22
the Stone Roses. Wow.
1:24
What a trap that is. It's a beauty.
1:28
And I think what really stands out for me about that as a song
1:33
is is what it meant to me when I first heard it.
1:36
And then my situation changed and I noticed that the meaning
1:41
of the song changed to me and that because initially it was
1:45
about how I needed help and the song was helping me, my heart
1:51
was black and broken. And then when I came through
1:54
that period of my life where I was in a more, I guess a
1:57
positive place, I realized that it was about how music or me
2:03
could help other people and other people that need that, you
2:06
know, the helping hands that they talk about.
2:08
So yeah, it really, really reflects that we all go through
2:12
these periods in our lives where we need help.
2:15
And for me, music can can really be powerful in in doing that.
2:19
So yeah, that's what and Story loves.
2:22
Everyone that comes on, we've had people with dyslexia, people
2:26
with ADHD, trauma, yourself. The music plays a massive part
2:33
in your life and it's funny how a song can go from being this
2:37
reminds me of this to it changes its whole outlook.
2:43
I mean, for me, I whenever I go on holiday as a kid, I always,
2:46
always a song that used to stick in my head, either because we
2:48
heard it in the car when we were driving on holiday or when
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you're on the beach. I think music just paints those
2:53
pictures in life as you're going along.
2:54
Oh. It definitely does that.
2:56
In fact, Sunday I was with my brother.
2:58
It was, it's his 50th birthday and a song came on in the the
3:03
pub that we were in and it both reminded us of our childhood
3:06
holidays because there was a certain tape, it was heard it
3:09
through the Grapevine and there was a certain tape that my
3:11
sister bought and we played in the car and it reminded us of
3:14
those long journeys up to to Yorkshire or Northumberland as
3:18
kids. Yeah, yeah, it's crazy.
3:21
So when when we spoke, we, we obviously we had a chat before
3:24
this and, and you talked about, you know, your epilepsy and
3:28
being diagnosed with it. What, what, what do you remember
3:31
about those early years, you know, and talk us through it a
3:34
bit about the, the diagnosis and, and the effect it had, I
3:38
guess. Yeah, it's always interesting
3:41
reflecting on that period of my life because, you know, there's
3:45
no getting away from it. I came out of it in a very
3:49
lucky, very lucky, and ended up being very grateful for the
3:54
people that I had around me. It could have been, it could
3:57
have been very different because I was diagnosed not until I was
4:01
17. A number of incidents growing up
4:06
where I'd had head injuries which apparently led to this to
4:12
eventually having tonic chronic seizures.
4:14
And then through my teenage years I started having seizures.
4:18
And it wasn't until I was 17 that I was formally diagnosed
4:23
with epilepsy that moment. So I was, I was in the sick
4:29
form, I was driving and I had AI was captain of the first team
4:33
rugby team at school and I went to the hospital, met my mum and
4:37
dad there. And in that moment I don't
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think, I doubt I even heard the words epilepsy.
4:43
What I heard was him I was getting diagnosed with a
4:46
lifetime of restricted opportunities, awkward social
4:50
situations. You know, I, I could only see
4:54
the impact it was going to have on me and I didn't know what
4:56
where I was going to go from there.
4:58
It felt like just when my whole world was opening up to me,
5:01
planning on university and all the rest of it, suddenly that
5:04
all came crashing down and I didn't know where I was going
5:07
to. Go So what, what's for you at
5:09
the age of 17? You know, I remember my, my
5:13
teenage years that they're, they're really when you build
5:16
your bonds, your friendship and you start to explore life, you
5:19
start to learn, you know, the joys of the pub and things like
5:23
that. I guess for you those those
5:25
teenage years really were were were stripped right back, right?
5:28
They were, and this is where I was lucky.
5:30
I've got the greatest group of friends I could possibly dream
5:35
of. They're still my best friends
5:36
today and they were right through school so just when it
5:40
all came crashing down around me, they were there to pick me
5:44
up. I remember going, I went back
5:47
into school after that diagnosis got dropped off because I was
5:50
told straight from then I can't drive anymore.
5:53
Walked into the common room and one of my best mates who's twice
5:56
the size of me and he was a big second row, just kind of stood
6:00
there while I trashed the room out of just anger and
6:04
frustration. And he protected me from hurting
6:08
myself, from hurting anybody else.
6:10
And then let me calm down and just got to understand what was
6:14
going on and that the rest of my friends, they did exactly the
6:17
same. They were there.
6:18
They were my protection for the next few, well, for the rest of
6:21
my life. But the definitely the next few
6:23
years, they always had my back. I knew that I'd be safe with
6:27
them. If I was going to have a
6:28
seizure, then they knew what to do.
6:30
And then I knew they'd look after me.
6:32
So I was incredibly lucky to have that support.
6:34
Yeah. Just just for, for people, there
6:37
may be some families that are going through the whole, the
6:39
whole process of being diagnosed with epilepsy.
6:43
I've been there myself and I know what it's like to go these
6:45
three things to tell people kind of like the process and how long
6:49
it, how long it it takes to get the full diagnosis, how long it
6:53
takes for them. Because I can imagine you've had
6:55
quite a bit of blood test to get the balance of your drug levels,
6:57
right. Talk people through that process
7:00
and, and you know, the difficulties of I guess seeing
7:05
the last latter part of school life and, and, and balancing
7:09
your epilepsy, I guess. Yeah, the diagnosis feels now
7:14
like it was a whirlwind. I had a couple of seizures and
7:19
then quite quickly I'm having CAT scans and Mris to get to a
7:24
point of diagnosis. But really that is at the start
7:27
of the journey and, and then after that, it's about trying to
7:31
find the right treatment for it depending on, you know, your,
7:35
your genetic make up and your, the way that your brain works.
7:39
And also every, every opportunity, every treatment
7:42
opportunity that's available to you comes with some side
7:45
effects. So I remember that that
7:47
discussion with the neurosurgeon around which side effects I'm
7:52
not going to best going to be be able to live with.
7:55
And so we, we picked 1 and it was Lamotrigine, the first one,
8:00
the first one I had and I was, I was taking that for about seven
8:07
years. And throughout those seven
8:08
years, initially I was still having, it wasn't controlled too
8:13
well. So we were up in dosage.
8:15
But even when, even when the tonic chronic seizures calm down
8:19
a bit, I lived with a knot in my stomach from the moment I woke
8:23
up until about mid afternoon because my, my epilepsy is
8:27
related to my sleep where I thought I was going to have a
8:30
seizure every day. I, I was on tenterhooks
8:33
thinking, am I going to have one?
8:35
How do I feel today? Am I twitching?
8:37
Am I having, you know, involuntary jerks with my arms,
8:41
which is always a telltale say? And it felt horrendous.
8:45
And I got to a point where I'd just about gone 12 months
8:48
without having a seizure, but I'd felt on the edge pretty much
8:53
every day of those those years. So I got my driving license
8:57
back, which was always my big thing.
8:59
I want to get my driving license back.
9:01
I'd only been driving a matter of months and it was a big thing
9:04
for me. So for to get that in a way, it
9:06
was a goal for me to get my driving license back.
9:09
So I did everything that I could to go those 12 months without
9:13
having a full seizure. I got it back and within a few
9:17
months of driving again, I had, I had a full tonic chronic
9:22
seizure at the wheel while I was driving.
9:25
I was at some traffic lights and I veered into an RAF base who
9:30
obviously treated it as some kind of terrorist attacks.
9:33
So I was dragged out of the car and.
9:35
Oh my God. Rifle point, Obviously I was
9:40
oblivious to all of this. I was told about it afterwards
9:43
and then they realised I was having a seizure and then I came
9:46
round when I was in the back of the ambulance and was told all
9:49
about it. But it it was after that and
9:52
losing my licence again and being backed to square one where
9:55
I said I can't live. I can't live like this.
9:59
I'm living on a knife edge every single day and it, it's affected
10:04
me in, in ways that I probably didn't even recognise.
10:07
I was living with one of my best friends at the time and he'd,
10:11
he'd say that he knew that I was in a, in a bad place, but I
10:16
didn't want to recognise it myself.
10:17
So I'd always say that everything was all right when
10:20
it, it blatantly wasn't. And then ultimately I went back
10:23
to the doctors and said that I couldn't live like this any
10:29
longer. And with this, with this cloud
10:31
hanging over me every day, thinking it was going to be
10:34
another bad day. So at that point we, we changed
10:37
the medication and fortunately I woke up the next day and it was
10:43
like, you know, the light being switched on and thought, Oh my
10:46
God, this is what life is supposed to feel like.
10:50
Yeah. And I moved on to Epilim and
10:52
there's lots of problems with that as a course of medication
10:55
now for different people. But I've been on it for what is
10:59
it 20 plus years probably or something.
11:02
I've not had a a single problem since.
11:04
I'm very fortunate that I found the right treatment for me.
11:08
And like a flick of a switch, I've been all right.
11:10
Yeah, that's amazing. I mean, I can't imagine what you
11:13
must go through because it feels like that's almost like meant
11:16
not only have you been diagnosed, oh, by the way,
11:18
there's the label, you're epileptic.
11:20
So that's, that's the label above your head straight away.
11:22
And then you've got the fear of am I going to have a fit?
11:25
Am I going to have a seizure? It's almost like double barrel
11:29
mental torture because you're living in fear of having a
11:32
seizure and also having to walk around with that branding that
11:34
someone's and there's nothing, I guess there's nothing physical
11:38
that anybody can see about you. There's no physical scar on your
11:41
head. There's no marks.
11:43
You've just been given a title of hey, you're epileptic, Ben,
11:46
you know. Yeah, and it one of the really
11:49
tricky bits to navigate during that period of your life as well
11:53
is, is relationships. It's great that I've got a group
11:55
of friends and family and I extended when I went to
11:58
university. I believe my friends there were
11:59
amazing as well. But then when you're looking at
12:02
girlfriends and partners in future, future wives, is, is
12:06
that something they want to live with?
12:08
How much is that affect their lives?
12:13
They're taking it on as well, right?
12:14
They're taking on that. They're taking on that constant,
12:17
I guess the constant fear of when am I going to have another
12:20
one? Am I going to have another one?
12:22
And I guess also, you know, when you're still, I mean, listen,
12:25
you know, both you and I similar ages, you know, I still don't
12:28
think I've grown up now. But when you're 17, you're
12:30
still, you're still a baby, right?
12:32
You know, I keep telling my children, listen, it takes you
12:35
ages to grow up, you know, don't rush life.
12:37
But at 17, you're still, you're still learning your way, aren't
12:40
you? To have that dropped on you.
12:42
And like you say, to try and balance relationships and
12:45
things, it must have been really difficult.
12:47
Was it, was there a particular person that kind of like that
12:50
stood out to you, that kind of like made you believe in
12:53
yourself and, and, and made you feel like, OK, maybe I can get
12:57
through this? There's not a single person
13:00
because friends and family, we're all all contributed to
13:05
that. You know, my parents, I cannot,
13:09
I cannot stress how supportive my parents were.
13:13
They, they put themselves in uncomfortable positions because
13:17
they knew that I needed to be able to, to live my life and,
13:23
and, and try and still experience all of the
13:27
opportunities that I had. We, we had a, you know, long
13:30
conversation about whether I should go to universe, go away
13:33
to university. I, I, I pretty much bodged up my
13:37
A levels because of all of this that happened on.
13:40
So I had to go through clearing, but I managed to get a place up
13:43
at Edgy Hill in Ormskirk. And you know, it's quite a long
13:46
way away. And they, they thought that
13:50
maybe, and I wasn't sure, maybe I should take a year out.
13:53
Maybe I should try and get my epilepsy a better understand my
13:57
epilepsy because it was, it's probably only a year in at this
14:00
point. But then when I, I didn't want
14:03
to take that step backwards because it felt like a step
14:06
backwards. All my mates were going away to
14:07
university. My brother and sister had gone
14:09
away to university. I don't, I didn't want to take a
14:12
step back And I've, you know, it's like being in school and
14:15
being told, Oh no, you've got to go back a year.
14:17
You just wouldn't ever want to do it at that age.
14:20
So I wanted to carry on. And they were putting themselves
14:23
in a very difficult position knowing that their their
14:26
epileptic son is going to be 2 1/2 hours drive away.
14:31
And I know from being a parent now, kids need me.
14:35
I want to be there in seconds. Yeah, absolutely.
14:39
To have what, what you know at uni did, did you have any, I
14:42
mean, the latter part of school and, and, and, and going to uni,
14:47
was there anything that you felt maybe the schools could have,
14:50
Did they accommodate you with regards to epilepsy?
14:53
Were they aware of it? You know, there's anything they
14:55
could have, anything you feel they could have done differently
14:57
or, or was everything in your mind like how it should be?
15:00
It was OK. I don't think they, I don't
15:04
think they accommodated me in any way.
15:07
I have, I have to make people aware, but I don't think they
15:12
did anything different with me. I had lots of seizures while I
15:16
was away at university. I remember one particular one
15:20
where I was on the phone to my dad and had a seizure and he he
15:26
drove 2 1/2 hours and found me at the bottom of the stairs with
15:29
the phone off the hook. This has heartbreaking.
15:35
And like you say, now you're a parent, you can kind of imagine
15:38
what your parents have gone through.
15:39
I mean, and driving all up the motorway, God knows what was
15:43
going through his mind at the time, you know?
15:44
Yeah. But did he stop me from, you
15:47
know, being that belligerent young person who'd go?
15:50
No, I want to live on my own. I want to be away.
15:52
No, he didn't, and neither did my mom and I'll.
15:56
Sadly, I lost both my parents a couple of years ago, but they
16:00
taught me a lot during that time and where I find myself today
16:04
and the person I am today. I owe a lot to them and the way
16:08
that they they brought me up and the way they treated me and the
16:11
values that they taught me that that has led me to where I am
16:14
today. You know what, now I, I, I
16:17
guarantee you, my friend, I guarantee you you're making me
16:19
cry, mate. I guarantee to be super proud of
16:21
you, mate, And, and for what you've achieved and where you
16:24
are now is, is absolute credit to you.
16:26
And what you've done there is LED me nicely into, because I, I
16:30
think it's really important that we shine a light where you were
16:34
and I'm where you are now. And I really, really want to
16:36
spend some time talking about Caldwell children because I
16:39
think what you do there is amazing.
16:41
So let's leave the epilepsy there for a bit and, and, and
16:45
not dwell on it. But tell me, tell me how your
16:48
journey from I guess uni LED you to Caldwell.
16:52
Tell us a bit about. That so communications, PR
16:55
journalism is what I studied at university and that was always a
17:00
passion of mine. Writing and communication has
17:03
always been a passion of mine. So I followed that after
17:07
university and ultimately that it led me home.
17:11
You know, it's a long story that you don't need to hear all of my
17:14
career, but it led me home back to Stafford.
17:17
And it was only meant as a, as a stop gap in between journalism
17:22
jobs. London's too expensive to try
17:24
and find your way as a struggling journalist.
17:27
So I came home for a little bit and it was just when a new hotel
17:31
in the town centre was reopening the Swan and it, and it's
17:34
interesting this part and how it impacted my career because I go
17:40
into the Swan, which was part of the hospitality group called the
17:42
Lewis Partnership. And Chris Lewis, who's the other
17:46
important part of my story, particularly professionally,
17:51
he's epileptic as well, by pure coincidence.
17:56
And I found a place at the Swan, like many people did at work for
17:59
the Lewis Partnership, probably still do today, found a really,
18:03
really supportive business community and had great friends
18:09
and more importantly was was given opportunities.
18:12
I knew that I had a mentor in Chris that the epilepsy would
18:16
not not play a part. Even though I had seizures
18:19
during my time at the Swan and it was still part of my life.
18:23
I knew that wouldn't affect his opinion of me or what he thought
18:27
that I was capable of. So I went from starting to be
18:29
just a part time barman at Swan when they reopened to then
18:34
starting to do their PR and marketing and then did the
18:36
group's PR and marketing. And then me and Chris opened up
18:40
a marketing agency in Stafford called Sponge Marketing.
18:44
And there was lots of great opportunities that, that, that,
18:49
that gave me starting up a live music festival during the
18:55
summers, one live, which still goes today.
18:58
I'm still proud to see that that carrying on, but, and I also got
19:04
the opportunity to work with local charities through that
19:08
position and, and, and using a mission, a community based
19:14
mission to support the charities, CSR and marketing
19:19
objectives. So I got to see that
19:23
interrelation between corporate and charity and benefits of, of
19:28
that for, for an employee base within a within a corporate.
19:32
And I think that alongside, alongside my experience with
19:37
epilepsy really lit the torch burning for and, and I've
19:43
reflected on this quite a lot recently with the passing of my
19:46
dad about because he, he, he, he was a volunteer, he was a civil
19:52
servant and also a volunteer for Amnesty International for my
19:56
whole life. And there was this attitude
20:00
towards service. And my mum was a teacher as
20:02
well. So she was a public servant as
20:05
well. And there was this, this sense
20:07
of service to community, to society that I didn't even know
20:12
was there, but it was like a fire burning inside me.
20:16
So when I saw the opportunity to join a charity which was
20:20
supporting children with additional needs, including
20:23
children. With epilepsy, but with a wide
20:26
variety of disabilities and special educational needs, I
20:30
knew that that was the path that I needed to go down.
20:33
I knew that I could use everything that every
20:36
professional and personal skills and attributes that I had to
20:40
serve to serve a community of people that I care about and
20:44
that's disabled and neurodivergent children and, and
20:48
their families. So it really lit the fire in me
20:51
and the ability to use the professional expertise that I've
20:55
developed throughout school, university and then in work for
21:00
something so meaningful was, was a fantastic, a fantastic
21:07
opportunity. And 1, you know, 17 1/2 years in
21:10
now and I haven't, I haven't looked back.
21:12
That's amazing. I think one of the things that's
21:14
really been highlighted on on these podcasts is we all start
21:19
with that label. We're all given in your case,
21:21
Hey, Ben, you know, here's your label, by the way, it's called
21:25
epilepsy. And everyone that's been on
21:27
these podcasts has been given a label, whether it be ADHD,
21:30
epilepsy, dyslexia, you know, trauma, PTSD, we all get given
21:34
that label. But there's something that
21:36
beautiful that comes out of it and it's lovely for people to
21:40
hear because you use the word, you know, a bright torch, a
21:43
flame that drove you on. We all find a purpose from it.
21:47
And if I guess in of its view. But it feels like you're giving
21:50
back for, for the things, you know, the support your mum and
21:53
dad gave you, the support that you got at the hospital, you
21:56
know, your friends, you now feel probably giving it back.
21:59
Have you? Have you?
21:59
Is it? Can you share a story that
22:02
you've come across that shows the difference Caldwell
22:04
Children's makes for families? OK.
22:05
Is there anything you can kind of share with us?
22:07
Tell us a story about that, perhaps?
22:09
Yeah, sure. And I do really relate it to the
22:13
people who saw beyond that label.
22:16
I talk about this quite frequently to, you know, to our
22:19
potential supporters and, and partners about how much a
22:22
difference somebody who looks you in the eye and tells you
22:27
that you can achieve something and, and looks beyond any
22:31
physical or, or medical label that you may have been given and
22:36
sees the potential in every child, every child, no matter
22:40
what. It's about looking at them and
22:43
seeing potential and making sure that they know that they have
22:47
potential. And that's the, that's the
22:50
beauty of the, the amazing team that we have at Caldwell
22:53
Children. And I see and hear it every day
22:56
here at our centre. I hear our team laughing,
23:00
smiling with children and the laughs that go out outside my
23:04
window. And I know that that's a group
23:07
of people who are, who are telling those children about
23:09
their potential and what they can do with their lives, with
23:12
their, you know, with their abilities.
23:16
And the the the greatest story of showing that potential is a
23:22
young girl that I've now known for and I'm proud to call my
23:26
friend. It's a girl called Tilly
23:29
Griffiths, and she has spinal muscular atrophy type 2.
23:34
She was born with it and it means that she has no muscle
23:39
tone in her body. So she has the strength of a of
23:42
a newborn baby. So needs support in everything
23:45
she she does. And you know, it affects her in
23:48
in a myriad of different ways. Full time wheelchair user, 24
23:52
hour support. What it but it never affected
23:55
was was her brain and her potential and she was first
23:59
introduced to the charity at an early age.
24:02
Her family were introduced to the charity in early age and we
24:06
provided her with a with a wheelchair, a powered wheelchair
24:08
a young age before the NHS would even contemplate spending
24:14
£15,000 on a powered wheelchair for somebody that young with a
24:18
with a life expectancy of only 7.
24:21
But what she now so eloquently puts and A and a my mum Jackie
24:28
has explained over years is the door that that opened.
24:31
And she said that the the equipment was one thing.
24:34
The equipment opened the door. But it was Caldwell children
24:37
that that took her through that door and showed her the world of
24:41
opportunity that was available to her and how she could
24:45
contribute to the charity, to her school, to the local
24:49
community. And it just grew and grew and
24:52
grew. She she's been a part of
24:55
fundraising for the charity and raised millions of pounds for
24:58
the charity through through her involvement.
25:01
But then her ambition, because that door was opened up to her,
25:05
she started not seeing things as as barriers as she probably once
25:11
did or that her parents maybe did, and she realised that she
25:15
could do anything she really wanted.
25:16
She started looking beyond. When she was a young child, her
25:20
ambition was to get from one side of the room to the other
25:23
without having to be carried because she had no, no
25:26
individual strength. The wheelchair allowed her to do
25:29
that, and she suddenly had some independence.
25:31
As she grew, that aspiration grew with her.
25:34
And she then eventually said, maybe I can, if I can get from
25:37
one side of the room to the other, maybe I can get from one
25:39
side of the world to the other. And she applied for Stanford
25:45
University. She got the top 2% of entry the
25:49
scores in the world. She travelled to the states, did
25:53
a degree in communications at Stanford University and then got
25:57
an internship with Disney. She's now gone back to do her
26:00
masters and she is the currently in New York doing it with a job
26:04
in APR firm. I've seen in that journey.
26:07
She's volunteered for me. I've worked closely alongside
26:11
her. She's my friend.
26:12
I'm super, super proud to call her my friend and she is.
26:16
That started with somebody going, yes, you can.
26:19
No, that's, that's just what a story.
26:21
I mean, what, just what a, what an incredible person.
26:26
I mean, you can't. I mean, we, we, we've talked
26:28
about epilepsy, we've talked about other stuff.
26:31
Imagine being given that at that age and this is what you've got.
26:38
You've got to deal with it. You know, you have to ask the
26:40
question if she, if she did, if she had not been given that,
26:43
that that powered chair that you guys gave her and and you know,
26:47
inspired her to push yourself. What what a story.
26:50
It's unbelievable lies. What an incredible person.
26:53
Yeah, yeah, I just. I love, I love that.
26:56
That it starts with somebody believing in you.
27:00
That's what the team do every day.
27:02
They believe in every child that they're in that's in front of
27:06
them. Yeah.
27:08
And who knows where that? You spoke about like, barriers
27:11
there. You and I both know this,
27:13
barriers still there. But what's in your opinion,
27:15
what's the biggest barrier children with disabilities still
27:18
face today? And it's sad that it's still
27:22
this after all of these years and all of the the evidence.
27:27
And, you know, particularly in today's society where
27:30
information is at our fingertips, there is still a
27:34
chronic lack of understanding about all types of disability.
27:38
And you've mentioned stigma before with the amount of
27:41
information that's available to us, this, there shouldn't be
27:45
stigma around any type of neurodivergence or, or
27:49
disability. We should be able to be fully
27:52
aware of everybody's challenges and capabilities and aware that
27:56
we're all, we all have our own challenges and we all have our
28:01
own skills. So we should be able to look
28:04
beyond a disability or an additional need nowadays.
28:08
But we don't. We don't, you know?
28:10
Yeah, no, I, I know mate. That's when we spoke previous to
28:14
this and and I told you, you know what the podcast was about.
28:18
It is, it is breaking those labels and breaking those
28:20
stigmas. And I really hope that that
28:22
young lady gets to hear how amazingly you spoke about her
28:26
because anything is possible. And it is upsetting when when
28:30
when you say things like that about the stigma.
28:32
And it shouldn't be there. It is, unfortunately, but it
28:35
shouldn't be. Yeah.
28:36
It's, I don't know whether it'll ever change.
28:38
I pray to God it does, but I don't know.
28:40
I don't know. So tell me, tell me.
28:42
We've talked about, you know, your work that you guys do
28:45
there. Tell me about the future of call
28:47
about children and, and what excites you about it in the
28:51
future? And also we get a lot of people
28:54
listening here. We get people, a lot of
28:56
businesses that listen. We get a lot of educators that
28:59
listen and obviously parents as well.
29:01
If anybody who kind of wants to get involved, what's what's a
29:04
good way for them to get involved or support or assist
29:06
you guys? Yeah, it's an exciting time.
29:08
Caldwell Children is just entering a new era for the
29:13
charity. We've appointed a new chief exec
29:16
back in November and since then we've been working on a new five
29:20
year strategy which all started with some in depth consultation
29:26
with our beneficiaries, the children and families that we
29:30
support, also with our team and with other professionals.
29:33
And we've recognised some of the things that public services and
29:38
other charities are failing to meet at the moment, and we're
29:42
going to address those. And a big part of that is
29:46
getting an increased level of face to face contact for people
29:50
who need support. We've all recognized the
29:52
efficiencies of moving into a more digital space, but with
29:56
that reduces the lack of human interaction and the, the emotion
30:02
and nuance that comes with the need for somebody to express
30:05
their, their own personal experience and, and get help.
30:09
So we're, we're going to begin in the within the next few
30:14
months starting to increase community based support for
30:19
families with children with additional needs to be able to
30:23
access clinical support. And we're going to be, it's
30:26
going to be support, not signposting.
30:28
So families will be able to come into clinics and get practical
30:32
support for their children and their situation in their
30:36
community. And that's, it's what the
30:38
families have told us that they need.
30:40
And I'm delighted that that's what we're going to be doing.
30:43
But we're also going to increase efficiencies within our own
30:47
services to make sure that we can help more people without.
30:50
We've got a wide range of services that support children
30:53
with a wide variety of disabilities and neurodivergence
30:58
and particularly on that neurodivergent side, we're going
31:02
to open that up. We've got an autism service at
31:04
the moment, but we're hoping to broaden that into more of a
31:07
neurodiversity service so we can we can help more families in
31:12
that particular field as well. It's exciting times and
31:15
hopefully we'll be able to reach far more people over the coming
31:19
months and years. For those amazing to hear and
31:23
you know, I know, you know, I don't need to tell you this, but
31:25
there are so many people struggling out there.
31:27
There really is. And the fact that you guys are
31:29
now going well, you know what, we're going to give you the
31:31
opportunity. We're going to come out to you
31:33
and we're going to it's heartbreaking some of the people
31:37
that reach out and you come across in life.
31:39
But I mean, you, you guys are amazing.
31:41
And, and the fact that you're, you're changing lives and, and,
31:44
and that young lady that you talked about who's now on her
31:47
own journey, it's, it's fantastic.
31:49
So, so if someone wants to get in touch with you, Ben, I always
31:52
ask if it's OK. I, I don't want them to come to
31:54
me. How can they get in touch with
31:56
you? What's the best way for them to
31:58
reach out to you? If they want some information or
32:00
they want to support you guys, How how can they get in touch
32:02
with you? Yeah, the, the website's always
32:04
the best way to help. We've got an online chat
32:07
function on there so they can ask any questions and then
32:11
there's lots of information and direct links to our different
32:13
departments. Also, you know, we've got, we've
32:16
got a great marketing team, so reaching out through direct
32:19
message on social media will get picked up and we do respond to
32:23
all of the messages we get on social media.
32:25
So yeah, please reach out. And we always want people to get
32:30
involved as volunteering opportunities.
32:32
You know, there's fundraising opportunities.
32:34
So if you, if you also have that that fire burning within you to
32:39
to be of service, but maybe your role doesn't allow you to in
32:43
your job or your career, then volunteer or or or help us
32:46
fundraise and you'll scratch that itch, I'm sure.
32:49
I see and I always ask 2 questions in the show that I ask
32:52
to every people. One is the music question and
32:55
one is I guess my closing question to you, which is what
32:58
does thick mean to thick no more mean to you personally?
33:01
To me personally, it's that it's that look that I've talked
33:04
about. It's that, look, when other
33:07
people, including our doctors and so on have given you that
33:12
label and giving you the stigma that's attached to it, it's
33:16
that, look, when somebody goes, I don't see any of that, I see
33:19
the potential in you. So don't believe you're thick
33:22
anymore. Believe in your potential.
33:24
Amazing. Ben, listen, honestly, I want to
33:27
thank you personally so much because I know how busy you are
33:30
and to give us a bit of your time to talk about, you know,
33:33
talking about your past and talking about what you're doing
33:35
with Cora. I think what it's shown me
33:37
particularly and the listeners is that diagnosis doesn't really
33:41
define you. It actually shapes your purpose.
33:44
It hasn't given you any limits. It's at all.
33:46
It's in fact, if anything, really, it's driven you on.
33:49
And for me, I think you're living proof that you're you're
33:51
changing lives, which is amazing.
33:53
And I think for anyone that's listening, if this has inspired
33:56
you and you want to get involved and you want to do anything,
33:59
please reach out to the band, to to Caldwell children and and for
34:05
me personally, I, I want to thank you.
34:07
But you've just summed it up. Lovely.
34:09
Think there more. It's yeah, it really you, you
34:12
can leave that in the past, you know, push on.
34:15
Don't let it define you. Breakthrough those barriers.
34:17
And yeah, Ben, thank you so much for joining us today.
34:20
Thank you, Jay. Thank you for doing this podcast
34:23
and and giving people the opportunity to speak about these
34:27
important matters and thank you for inviting me and I really
34:29
appreciate it. You're very welcome.