
The Sunflower Conversations
Welcome to the Sunflower Conversations, the podcast where we explore the experiences of disabled people with non-visible disabilities through the lens of the Hidden Disabilities Sunflower.
This is a space to hear authentic stories from disabled people navigating life with non-visible disabilities such as chronic illness, mental health conditions, neurodivergence, and more. While most episodes focus on lived experience, we also feature occasional insights from experts in healthcare, accessibility, and inclusion.
Whether you or someone you care about wears the Sunflower, our conversations aim to raise awareness, build understanding, and help create a more inclusive and compassionate world.
Empowering voices. Raising awareness. Challenging assumptions - one conversation at a time.
The Sunflower Conversations
PIP with Murray Goulder
Murray Golder shares his experience with epilepsy and Personal Independence Payment (PIP), highlighting how this support enables him to continue working full-time while managing his condition safely.
Murray explains that his absence seizures, which can cause him to lose awareness for 20 seconds to 2 minutes, can place him in danger as he isn’t conscious of what he is doing. And more recently, as a consequence of the medication, Murray's memory function has deteriorated rapidly.
- PIP provides essential support towards Murray's costly transport needs and medication expenses
If you are experiencing any issues discussed in this podcast, please get in touch with your healthcare practitioner.
Support
Hosted by Chantal Boyle, Hidden Disabilities Sunflower.
If you enjoyed this podcast, please rate, review and share it to increase awareness and understanding of non-visible disabilities.
Find out more about the Sunflower by visiting the website hdsunflower.com
Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby websiteS is a Sunflower member, specialising in providing legal support and online advice for tribunal appeals for PIP, ADP, ESA, and UC Claims.
Personal Independent Payment, PIP with Murray Goulder
Speakers:
Chantal Boyle
Murray Goulder
00:00:03:00 - 00:00:05:05
Welcome to the
Sunflower Conversations
00:00:05:05 - 00:00:10:04
My name is Chantal, and today I have
the pleasure of welcoming Murray Goulder
00:00:10:04 - 00:00:12:15
A back to the Sunflower
Conversations.
00:00:12:15 - 00:00:17:02
We first met in 2023 with Daniel Jennings
from Epilepsy Action,
00:00:17:02 - 00:00:20:14
and we learnt about the type
of epilepsy that Murray has,
00:00:20:14 - 00:00:23:14
as well as the services
that Epilepsy Action provides.
00:00:23:14 - 00:00:29:02
So do check out that episode
on this on the podcast platform.
00:00:29:02 - 00:00:32:17
Some of our conversations,
it's really great. Very informative.
00:00:32:17 - 00:00:37:13
Today the conversation
is about Personal Independence
00:00:37:13 - 00:00:42:24
Payment PIP what it is, who is eligible
and how it supports disabled people.
00:00:42:24 - 00:00:49:08
So Murray is joining us to talk from
a perspective of his lived experience,
00:00:49:08 - 00:00:51:16
you know,
using PiP and,
00:00:51:16 - 00:00:54:08
the benefits that
it provides to him.
00:00:54:08 - 00:00:56:22
So welcome. Murray.
How are you?
00:00:56:22 - 00:00:58:02
I'm fine
thanks Chantal
00:00:58:02 - 00:01:01:19
Thanks for having me back.
I'm very well.
00:01:01:19 - 00:01:03:16
And first of all,
00:01:03:16 - 00:01:05:17
we're going to give a
visual description, Murray,
00:01:05:17 - 00:01:09:10
so that anybody listening to
this is able to kind of get
00:01:09:10 - 00:01:13:14
an idea of what I've look
like, so I'll go first.
00:01:13:14 - 00:01:16:03
I am
a woman.
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I am in
my midlife,
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and, I have
got brown skin.
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I've got long brown
curly hair, and I am wearing,
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clear framed
glasses.
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I have
makeup on.
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I've got a very multi-colored
sleeveless blouse
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on, and I have an earring in
my nose and in my ears.
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So, Murray,
over to you.
00:01:44:23 - 00:01:46:10
I identify as
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‘he’
I am white.
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I'm 45
years old.
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My hair is slowly
graying up.
00:01:53:16 - 00:01:55:18
I'm like
a badger.
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I'm just wearing
a t shirt.
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And I have,
an implant
00:02:02:06 - 00:02:05:22
with a device on the right
hand side of my head.
00:02:05:22 - 00:02:06:06
Thank you.
00:02:06:06 - 00:02:10:00
Murray and Murray is also wearing
his green Sunflower lanyard
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with the yellow
sunflowers on it.
00:02:11:15 - 00:02:14:17
So let's
get started.
00:02:14:17 - 00:02:19:07
So what type of epilepsy do you have
and what symptoms do you experience?
00:02:19:07 - 00:02:24:04
I started to have seizures
about 30 years ago.
00:02:24:04 - 00:02:27:06
I experienced
Absence seizures.
00:02:27:06 - 00:02:30:10
I've had a few tonic clonics
but with the absence seizures,
00:02:30:10 - 00:02:35:22
I can lose control of
my autonomy.
00:02:35:22 - 00:02:39:11
or anything from 20 seconds
to two minutes.
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And. Yeah the
00:02:41:20 - 00:02:45:05
the build up to it if I,
if I get any sort of build up at all,
00:02:45:05 - 00:02:48:14
I just get a riseing sensation
from my stomach right up to my throat.
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It's very,
very quick.
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It's not
nice.
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And and
then what?
00:02:54:03 - 00:03:00:06
What happens in terms of the symptoms
when you're having your seizure?
00:03:00:06 - 00:03:00:22
I've been.
00:03:00:22 - 00:03:06:03
I've been told that, I can continue
to walk if I'm already walking.
00:03:06:03 - 00:03:10:08
So if I'm going to work,
I can continue to cross roads.
00:03:10:08 - 00:03:14:02
I have I sometimes
can dribble, I can drool
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I can,
00:03:16:10 - 00:03:19:22
I can mumble,
fidget.
00:03:19:22 - 00:03:22:06
And. Yeah, that
that's about it.
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There's been instance
where I've almost choked in my sleep.
00:03:25:07 - 00:03:25:17
Right.
00:03:25:17 - 00:03:28:14
And I remember that
when we've met before.
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You said that that you've been
worried about
00:03:32:11 - 00:03:34:14
having a
seizure and
00:03:34:14 - 00:03:38:20
walking onto the train tracks
or crossing the road
00:03:38:20 - 00:03:41:13
because there's no awareness
from as far as you're
00:03:41:13 - 00:03:46:00
as far as you are in your body, you're
unaware of what's happening around you.
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Solutely from
outside.
00:03:47:11 - 00:03:48:24
Some people would
think potentially
00:03:48:24 - 00:03:51:20
or even drunk, and I've
been accused of that before.
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Which must
be awful.
00:03:53:14 - 00:03:53:23
Yeah.
00:03:53:23 - 00:03:56:20
It's I well, wearing my
lanyard and stuff like that?
00:03:56:20 - 00:04:00:07
Especially my Sunflower
one I’ll wear, as well as the bands.
00:04:00:07 - 00:04:02:06
It's the only
thing you can do.
00:04:02:06 - 00:04:06:00
You know, now that I've got a device
on my head, it might give an indicator.
00:04:06:00 - 00:04:08:07
Yet a lot of people
think it's a hearing aid.
00:04:08:07 - 00:04:11:09
Yeah, it's getting some
interesting conversations.
00:04:11:09 - 00:04:15:15
So what exactly is PIP
personal independence Payment.
00:04:15:15 - 00:04:18:01
And under the current rules,
who's eligible for it?
00:04:18:01 - 00:04:22:18
So first of all, what is
Personal Independent Payment.
00:04:22:18 - 00:04:24:04
Please explain.
00:04:24:04 - 00:04:24:18
Right.
00:04:24:18 - 00:04:30:13
PIP is there to assist people
who have conditions that affect
00:04:30:13 - 00:04:33:21
their mobility,
or affects the condition
00:04:33:21 - 00:04:36:23
if it affects their,
daily activities.
00:04:36:23 - 00:04:40:10
So if I keep it, you know,
example for me,
00:04:40:10 - 00:04:44:12
mobility is an issue because
of the seizures whilst I walk.
00:04:44:12 - 00:04:47:14
They ask you a question like,
can you walk over 200m?
00:04:47:14 - 00:04:48:10
Yes, I can,
00:04:48:10 - 00:04:52:09
but I've walked further during a seizure,
so it does affect me getting around.
00:04:52:09 - 00:04:56:03
We no longer have a car and
in our household so that, you know,
00:04:56:04 - 00:05:00:16
I need help with, transport,
and safe transport for me.
00:05:00:16 - 00:05:05:03
So sometimes it can be
if I'm going to my workplace, direct,
00:05:05:03 - 00:05:09:10
via a taxi, and people will say, oh,
that's expensive, but it's the safest way
00:05:09:10 - 00:05:11:02
for me to
travel A to B.
00:05:11:02 - 00:05:15:15
The daily living component is things like,
do you need help with washing?
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Do you need help
with cooking?
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Do you
need help
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with getting dressed?
there's lots of different,
00:05:23:14 - 00:05:26:04
areas within that.
Taking medications is another one.
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And, my example for
that would be my memory.
00:05:28:24 - 00:05:34:10
I've actually accidentally overdosed
or missed, medications.
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So I need I do
need help with that.
00:05:36:13 - 00:05:39:08
But that's more
memory impacted.
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That's
basically it.
00:05:39:24 - 00:05:41:08
There's two
parts to it.
00:05:41:08 - 00:05:44:00
Yeah, that's
really serious, isn't it?
00:05:44:00 - 00:05:46:15
We spoke
to
00:05:46:15 - 00:05:50:03
Lydia, who is a journalist
on the podcast,
00:05:50:03 - 00:05:54:03
and she was talking about PIP,
and I think she has somebody
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And so even if she has to have calls
to PIP people, she has somebody
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who will be with her to help
her with the communication
00:06:03:01 - 00:06:06:02
element of
of that.
00:06:06:02 - 00:06:09:14
So there are different ways,
aren't there, that that it can help.
00:06:09:14 - 00:06:13:23
So how much of a
lifeline is PIP for you?
00:06:13:23 - 00:06:16:14
For me
personally, it's,
00:06:16:14 - 00:06:20:13
it's I do need it
I require it.
00:06:20:13 - 00:06:23:02
you know, a lot of the talk at
the moment is about trying
00:06:23:02 - 00:06:26:10
to get people back to work,
and the rhetoric, I think is wrong because
00:06:26:10 - 00:06:30:24
it's anything now between 53
and 60% of people with conditions do work.
00:06:30:24 - 00:06:33:09
So for me,
00:06:33:09 - 00:06:36:03
the mobility element
goes towards my travel.
00:06:36:03 - 00:06:39:16
That actually doesn't
even cover it, doesn't touch it.
00:06:39:16 - 00:06:42:16
So I, I also use
the daily living
00:06:42:16 - 00:06:46:11
part to pay towards medications are aren't
prescribed
00:06:46:11 - 00:06:50:19
side effects from my own
epilepsy can be severe headaches.
00:06:50:19 - 00:06:53:16
I take preventative medication
that is prescribed,
00:06:53:16 - 00:06:57:09
but if you have anything else,
you just have to take,
00:06:57:09 - 00:06:59:07
ibuprofen.
You know, any,
00:06:59:07 - 00:07:03:12
any other type of over-the-counter
painkiller, and it's expensive.
00:07:03:12 - 00:07:05:13
Epilepsy is an
expensive condition.
00:07:05:13 - 00:07:08:02
So I find if I lost it,
it would probably.
00:07:08:02 - 00:07:13:16
I'd probably be looking for £500 to £700
a month just for having epilepsy.
00:07:13:16 - 00:07:16:17
That's just
so cruel.
00:07:16:17 - 00:07:20:23
I don't think unless you are living
with a health condition.
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Yeah, disability and having
to access medication.
00:07:25:23 - 00:07:28:07
I don't think
many of us
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appreciate the financial cost
associated with the prescription.
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And all of that, because it
would be an assumption
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that if you have a life long condition
or even if it's temporary,
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if that is
significantly affecting
00:07:46:11 - 00:07:49:11
your life, or it's going
to keep you alive.
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You would assume
that that would be
00:07:53:08 - 00:07:56:07
something that everybody
would have access to.
00:07:56:07 - 00:07:57:10
Yeah, I.
00:07:57:10 - 00:08:00:19
Think that's a catch 22 situation
where you you are employed,
00:08:00:19 - 00:08:01:24
but if you
had to spend
00:08:01:24 - 00:08:06:03
that amount of money on your medication,
then you wouldn't be able to work.
00:08:06:03 - 00:08:07:03
Would you.
00:08:07:03 - 00:08:10:08
That's that's exactly the point
I've thrown over, is that if I
00:08:10:08 - 00:08:14:13
if they take this away from people,
then you're going to actually stop
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a lot of those people from working,
or at least as much as they are.
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I mean, I'm
00:08:19:03 - 00:08:23:09
a full time work, and I have been
since I visit, since I was a teenager.
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I have only
claimed
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for about the last 12 years
because I had no idea what it was.
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I didn't
even know.
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So it's not I'm not
someone who's just claimed
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and claimed and claimed,
and I think they look at the wrong people.
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And there's also about 20% of people out
there without conditions that could work.
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I would say it's a better thing
to try and get.
00:08:43:14 - 00:08:46:23
Let's get 100% of people working
without a condition first,
00:08:46:23 - 00:08:50:18
and then work
on the rest. So yeah.
00:08:50:18 - 00:08:51:24
And so
00:08:51:24 - 00:08:56:11
you didn't you didn't know
about it until the last decade.
00:08:56:11 - 00:08:58:09
No.
00:08:58:09 - 00:09:03:17
What is the process of applying
for it like I've heard a lot of things
00:09:03:17 - 00:09:08:22
I'd like to hear from your perspective,
what is the process of applying for it?
00:09:08:22 - 00:09:12:15
Originally it was an interview
over the phone, the old system.
00:09:12:15 - 00:09:14:18
Then when
they moved,
00:09:14:18 - 00:09:17:17
the DLA, the disability living
allowance to PIP,
00:09:17:17 - 00:09:19:20
they said, you're going to
be coming off of this.
00:09:19:20 - 00:09:21:06
You need to
be reassessed again.
00:09:21:06 - 00:09:25:20
So this is this is back in that,
you know, this is years ago.
00:09:25:20 - 00:09:28:17
But you would you would
write to apply then I would
00:09:28:17 - 00:09:31:23
that would send
you a quite a large form.
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And you would have to fill out
sections of why, why you need it.
00:09:35:09 - 00:09:37:04
So, washing
and stuff.
00:09:37:04 - 00:09:40:01
So it's basically
what are the risks to you,
00:09:40:01 - 00:09:41:18
and cooking would be one for me.
00:09:41:18 - 00:09:46:11
I don't, I, I can cook, I can make
food, but I've got to be very,
00:09:46:11 - 00:09:50:03
very careful because, you know,
sharp knives and stuff like that.
00:09:50:03 - 00:09:55:00
And one of my reviews, it came back that
I, it was okay, I could use a microwave.
00:09:55:00 - 00:09:58:05
My argument back
was, that's expensive.
00:09:58:05 - 00:10:01:13
And also, I find it offensive that you
think that anyone with conditions
00:10:01:13 - 00:10:07:02
like this would have to use a microwave
and just eat those sorts of foods?
00:10:07:02 - 00:10:09:12
So you apply
that way,
00:10:09:12 - 00:10:14:04
then you can, so my
case get knocked back.
00:10:14:04 - 00:10:16:09
And then you
have to escalate
00:10:16:09 - 00:10:20:11
that eventually you go to a
tribunal and you win your case.
00:10:20:11 - 00:10:21:06
I've done
it twice.
00:10:21:06 - 00:10:24:03
I'm expecting a third one
this year, even with the changes.
00:10:24:03 - 00:10:27:24
But just out of interest,
I thought I'd show you my paperwork.
00:10:27:24 - 00:10:31:10
And then if you can see how thick
that is, that's all my paperwork.
00:10:31:10 - 00:10:33:17
Murray’s
holding up a
00:10:33:17 - 00:10:38:19
ring binder, the likes I haven't
seen since I was at college.
00:10:38:19 - 00:10:39:17
And it's very
00:10:39:17 - 00:10:44:16
thick, and it is
rammed full of paper.
00:10:44:16 - 00:10:45:19
Yeah
00:10:45:19 - 00:10:48:03
That includes further
medical evidence.
00:10:48:03 - 00:10:50:24
Evidence of
tests
00:10:50:24 - 00:10:56:01
I've had. Psychological tests, that prove
that I was having problems with my memory.
00:10:56:01 - 00:10:57:04
And also proof
00:10:57:04 - 00:11:02:02
that I could not have an operation
resective surgery to stop the epilepsy.
00:11:02:02 - 00:11:05:08
Because if I had it on my type
I would actually lose
00:11:05:08 - 00:11:09:01
the use of my arm,
my leg.
00:11:09:01 - 00:11:12:11
I would completely lose my memory,
and I'd have to learn to speak again.
00:11:12:11 - 00:11:16:22
So my argument was, I don't think
that's really an option for me.
00:11:16:22 - 00:11:21:08
I'll know from medication and monitoring
that, but I'm doing the best I can.
00:11:21:08 - 00:11:23:13
It's yes,
I can do.
00:11:23:13 - 00:11:28:19
when you're
already,
00:11:28:19 - 00:11:31:05
you know,
navigating life
00:11:31:05 - 00:11:36:01
as somebody who lives
with epilepsy, experiencing
00:11:36:01 - 00:11:38:02
quite the memory
loss, the
00:11:38:02 - 00:11:40:22
it must be a continual fear
in the back of your mind, like,
00:11:40:22 - 00:11:44:23
am I going to do something to really
injure myself or somebody else?
00:11:44:23 - 00:11:45:12
Yeah.
00:11:45:12 - 00:11:48:18
Then to have to be
advocating for yourself
00:11:48:18 - 00:11:51:24
in such a manner,
it must take so much energy.
00:11:51:24 - 00:11:55:23
Like do you do you find that
that has an impact on your health?
00:11:55:23 - 00:11:58:02
Just this
continual fight?
00:11:58:02 - 00:12:01:04
I'm probably I'm probably
a stress head, but
00:12:01:04 - 00:12:04:22
because I like people asking me questions
about how I've done it.
00:12:04:22 - 00:12:07:04
So it's all about that honesty thing.
00:12:07:04 - 00:12:10:18
And don't let people tell you
what they have got no idea about.
00:12:10:18 - 00:12:14:16
So if you've got someone
assessing you, I got assessed
00:12:14:16 - 00:12:17:12
and the person said
Murray had a good gait,
00:12:17:12 - 00:12:21:02
and I said, that's got nothing
to do with my when I have a seizure.
00:12:21:02 - 00:12:22:15
I don't know
what I looked like.
00:12:22:15 - 00:12:26:23
I saw one recently on a video
on a ring camera when I fell over.
00:12:26:23 - 00:12:30:21
And I've never, ever seen
myself have a seizure.
00:12:30:21 - 00:12:34:16
They said that I was dressed well,
I was well kempt.
00:12:34:16 - 00:12:36:13
I said, well, that's
just how I dress.
00:12:36:13 - 00:12:40:15
I, you know, do you expect
someone of epilepsy to have odd socks?
00:12:40:15 - 00:12:43:17
And then, one of
the other ones was,
00:12:43:17 - 00:12:46:18
they set up to hold
a reasonable conversation.
00:12:46:18 - 00:12:48:10
At that time, I said, I'm a coach.
00:12:48:10 - 00:12:50:06
I have to be
able to do it.
00:12:50:06 - 00:12:52:20
If during seizure, it could
be complete gobbledygook.
00:12:52:20 - 00:12:53:15
I've got
no idea.
00:12:53:15 - 00:12:57:17
So they base it on what they say
at the time and not on the evidence.
00:12:57:17 - 00:13:01:04
You've been you actually being given
my neurologist is really, really good
00:13:01:04 - 00:13:04:15
because when I explain this stuff
to her, she writes down
00:13:04:15 - 00:13:06:12
he will never
actually get better.
00:13:06:12 - 00:13:08:22
Or we can hope
for is trials of meds
00:13:08:22 - 00:13:12:11
and anything else might help,
but actually it's not going to go away.
00:13:12:11 - 00:13:14:22
So I just think I wouldn't
I don't know my mind.
00:13:14:22 - 00:13:17:11
It's like you have
a diagnosis of epilepsy.
00:13:17:11 - 00:13:18:17
That’s the
diagnosis.
00:13:18:17 - 00:13:23:00
I mean, all of this, this,
you know, interrogation
00:13:23:00 - 00:13:27:02
If you, if you're someone in a wheelchair
or you know, you've got diagnosed,
00:13:27:02 - 00:13:30:07
other issues, hearing and stuff like that,
what you do need this help
00:13:30:07 - 00:13:31:10
you've got
a diagnosis.
00:13:31:10 - 00:13:36:05
I think they've lost control of what's not
diagnosed and it's how they assess you.
00:13:36:05 - 00:13:41:10
So I guess they assess me
on things like physicality.
00:13:41:10 - 00:13:45:17
And if you've got mental
health, neurological disorders
00:13:45:17 - 00:13:49:16
and physical disorders,
they throw it all into one assessment.
00:13:49:16 - 00:13:52:14
Everyone is an individual
and that's fine.
00:13:52:14 - 00:13:56:02
We learned on this podcast
is that I could speak to
00:13:56:02 - 00:13:59:02
somebody else with epilepsy
tomorrow, and their experiences
00:13:59:02 - 00:14:01:16
will be different to yours.
Absolutely.
00:14:01:16 - 00:14:06:22
So person centered
does seem to be the sensible option.
00:14:06:22 - 00:14:09:22
I was just wanting to go back
to what you said about,
00:14:09:22 - 00:14:13:03
and that you get support with your travel
00:14:13:03 - 00:14:16:10
so that you can get to work safely again.
00:14:16:10 - 00:14:20:14
You said it doesn't cover
the full cost of that, so there are caps
00:14:20:14 - 00:14:24:08
are there on or anything
that you are awarded
00:14:24:08 - 00:14:28:03
and there's a cap it's not like,
but I now have a private chauffeur
00:14:28:03 - 00:14:33:24
and I can travel everywhere
all the time by.
00:14:33:24 - 00:14:37:14
It's I would say travel
wise, just for work.
00:14:37:14 - 00:14:42:14
That cost me £20 pounds
a day in total.
00:14:42:14 - 00:14:44:24
So I'll be spending
upwards of £300
00:14:44:24 - 00:14:48:19
£320 to £400
a month for work.
00:14:48:19 - 00:14:50:09
And it depends
where I need to go.
00:14:50:09 - 00:14:52:15
Then you've got to think
about your own travel.
00:14:52:15 - 00:14:54:08
You know,
I can use
00:14:54:08 - 00:14:56:22
trains and
stuff safely.
00:14:56:22 - 00:15:00:09
I have to tell the guards
and the wellbeing officers about that, so.
00:15:00:09 - 00:15:03:22
But all of it, all of that cost because
you've got your personal life as well.
00:15:03:22 - 00:15:07:14
Like I say, we no longer have a car
because my wife got diagnosed
00:15:07:14 - 00:15:08:24
with leukemia
last year
00:15:08:24 - 00:15:12:06
and she's not going to be to
drive again because she can't see.
00:15:12:06 - 00:15:14:01
So it's yeah.
00:15:14:01 - 00:15:17:12
So where you could help towards
paying for fuel and stuff.
00:15:17:12 - 00:15:19:01
It's going to be
more expensive now
00:15:19:01 - 00:15:22:05
because neither of you
has a way to get around.
00:15:22:05 - 00:15:23:06
Yeah.
00:15:23:06 - 00:15:26:07
And, and my workplace, by the way,
the reason I use tax,
00:15:26:07 - 00:15:30:05
it's on a very, very busy industrial
site next to Gatwick airport.
00:15:30:05 - 00:15:32:06
If I walk there, take
me about an hour.
00:15:32:06 - 00:15:34:22
But I couldn't trust
what would happen.
00:15:34:22 - 00:15:35:05
00:15:35:05 - 00:15:39:04
Yeah, I mean, that is basically
the motorway, isn't it?
00:15:39:04 - 00:15:41:08
Yeah. Yeah.
00:15:41:08 - 00:15:43:10
It's very, very
busy down that way.
00:15:46:20 - 00:15:50:19
Do you think that
there is a misconception
00:15:50:19 - 00:15:54:06
among the public
about what PIP is actually for?
00:15:54:06 - 00:15:58:04
I think we've been I think
in terms of disabled people
00:15:58:04 - 00:16:01:19
and the way they
talk about benefits.
00:16:01:19 - 00:16:05:15
I would not even change the word
benefit to assistance.
00:16:05:15 - 00:16:10:16
I believe that they've lumped everyone
in, when I talk to people about it
00:16:10:16 - 00:16:15:00
and I say, well, why do you need it and
stuff like that, you know, you can walk.
00:16:15:00 - 00:16:18:23
I think people think that benefits
is basically scrounging
00:16:18:23 - 00:16:21:18
and that there will
be people out there
00:16:21:18 - 00:16:24:23
who are taking the rise
and taking advantage of it.
00:16:24:23 - 00:16:28:05
And I couldn’t
tell you who,
00:16:28:05 - 00:16:29:22
but that's what they
really need to look at.
00:16:29:22 - 00:16:33:24
They need to they need to break
it down into the types of people
00:16:33:24 - 00:16:35:18
that are claiming
these things.
00:16:35:18 - 00:16:39:16
And then I would expect mental health
and the things you know, in the news
00:16:39:16 - 00:16:44:02
at the moment, especially with youngsters
and stuff, it's a it has spiked.
00:16:44:02 - 00:16:49:03
They really need to then look into why
is it like this, why is this happening?
00:16:49:03 - 00:16:49:17
But yeah
00:16:49:17 - 00:16:53:10
I believe that everyone if someone hears
that, you'll get your receiving PIP that
00:16:53:10 - 00:16:54:03
you’re just
00:16:54:03 - 00:16:57:11
you'll know better than someone
who isn't working immediately jump to.
00:16:57:11 - 00:16:58:24
You're not
working.
00:16:58:24 - 00:16:59:22
Yeah, you're
not working.
00:16:59:22 - 00:17:01:13
I had that
from an MP.
00:17:01:13 - 00:17:05:02
When I was at Parliament and
I was talking about PIP there, and he
00:17:05:02 - 00:17:06:08
He immediately
went to,
00:17:06:08 - 00:17:07:20
so you can't
work then?
00:17:07:20 - 00:17:09:12
And I said,
I absolutely do work.
00:17:09:12 - 00:17:12:06
I probably do more hours than
some of the people in this room.
00:17:12:06 - 00:17:14:15
Yes, you
probably do.
00:17:14:15 - 00:17:16:09
It's
00:17:16:09 - 00:17:19:11
I don't know
when it started,
00:17:19:11 - 00:17:24:18
but there used to be a lot of headlines
in the newspaper benefit scroungers
00:17:24:18 - 00:17:28:11
and really
diminishing
00:17:28:11 - 00:17:29:22
individuals.
00:17:29:22 - 00:17:32:09
It was dehumanizing
them really.
00:17:32:09 - 00:17:32:14
Yeah.
00:17:32:14 - 00:17:35:23
This is somebody
who's actually down on their luck,
00:17:35:23 - 00:17:41:04
needing some assistance
to live, to literally buy the basics.
00:17:41:04 - 00:17:41:13
Yeah.
00:17:41:13 - 00:17:44:14
And where we
are dehumanizing
00:17:44:14 - 00:17:48:21
them. Sadly, there are people
that take advantage
00:17:48:21 - 00:17:51:05
in every
walk of life.
00:17:51:05 - 00:17:53:20
Unfortunately,
that's just that's just a fact.
00:17:53:20 - 00:17:55:00
That's just what happens.
00:17:55:00 - 00:18:00:12
But as you said, you know, you
you are a living, breathing example
00:18:00:12 - 00:18:05:22
of somebody who wants to work
is it has a supportive employer.
00:18:05:22 - 00:18:08:23
So it's just right,
how can I get there safely?
00:18:08:23 - 00:18:12:14
And how can I also live
a, you know, live a life and,
00:18:12:14 - 00:18:16:13
you know, do things
which actually bring bring me joy, etc..
00:18:16:13 - 00:18:20:14
So and I think I was just going back
to what I was going to say
00:18:20:14 - 00:18:24:02
before you mentioned
about, mental health,
00:18:24:02 - 00:18:28:20
and I was talking about the fact
that you've got a supportive employer.
00:18:28:20 - 00:18:33:24
And I think if we were looking at, okay,
the the section of people who are claiming
00:18:33:24 - 00:18:39:07
PIP who are not in work at the moment,
as you said, what are those reasons
00:18:39:07 - 00:18:43:11
and what can
we do to support
00:18:43:11 - 00:18:46:20
those people to
be in employment
00:18:46:20 - 00:18:51:07
so that they are able to enjoy
the things that you're talking about?
00:18:51:07 - 00:18:56:05
Because if you're not working,
you're not able to have a holiday
00:18:56:05 - 00:18:57:18
or have
a break.
00:18:57:18 - 00:19:01:09
You know, those benefit payments
don't allow you to do that.
00:19:01:09 - 00:19:04:17
It's the it's the
luxury of being able
00:19:04:17 - 00:19:07:18
to work that enables
you to do those things.
00:19:10:23 - 00:19:15:03
The reality
for you is
00:19:15:03 - 00:19:19:03
if you are no longer
eligible for PIP,
00:19:19:03 - 00:19:21:10
what impact will that
have on your life?
00:19:21:10 - 00:19:22:22
The costs
will increase.
00:19:22:22 - 00:19:26:21
I'll have to find the money that I talked
about earlier that that would be.
00:19:26:21 - 00:19:29:00
I'll just have to look at what
we spend money on.
00:19:29:00 - 00:19:30:01
And I would say
right
00:19:30:01 - 00:19:31:02
that stops
that stops.
00:19:31:02 - 00:19:33:18
It's it would be
that that simple
00:19:33:18 - 00:19:36:03
because the main things is
that you can pay your bills.
00:19:36:03 - 00:19:39:15
You can you can still you
can still work as much as you can
00:19:39:15 - 00:19:41:17
that make it
incredibly difficult.
00:19:41:17 - 00:19:44:09
It took me
14 months
00:19:44:09 - 00:19:47:23
the last time to go through,
get all my paperwork.
00:19:47:23 - 00:19:51:14
I wrote up almost 200
pages of evidence myself
00:19:51:14 - 00:19:52:13
to challenge
back.
00:19:52:13 - 00:19:55:17
And the DWP didn't
even turn up to court on the day.
00:19:55:17 - 00:19:58:14
And the judge
put it in my favor.
00:19:58:14 - 00:20:00:20
And that's for like, say,
for a diagnosed condition.
00:20:00:20 - 00:20:06:02
I mentioned my wife with leukemia
while she was in a bed in Brighton.
00:20:06:02 - 00:20:07:05
I phoned
up about
00:20:07:05 - 00:20:11:12
getting assistance for her because she's
and that she's still not back at work.
00:20:11:12 - 00:20:14:01
And it took me four
minutes to get that.
00:20:14:01 - 00:20:19:22
I barely scraped nine points and she got
43 points in four minutes over the phone.
00:20:19:22 - 00:20:24:14
And that was me talking on that behalf,
right, to get assistance for her, you see.
00:20:24:14 - 00:20:26:12
So there's a
disparaging thing
00:20:26:12 - 00:20:30:10
because cancer is almost
like a protected characteristic. Yes.
00:20:30:10 - 00:20:33:20
They would never, ever
I think that would be a bad headline
00:20:33:20 - 00:20:37:11
for them if they if I didn't help
someone like that, you know. Yes.
00:20:37:11 - 00:20:40:03
When it's something else
a bit more, you know, epilepsy
00:20:40:03 - 00:20:43:05
is a hit and miss
and it's, wrong.
00:20:43:05 - 00:20:45:11
The way they take
judge it is totally wrong.
00:20:45:11 - 00:20:48:17
So 200 pages
of evidence.
00:20:48:17 - 00:20:48:23
Yeah.
00:20:48:23 - 00:20:51:20
I don't think I would
be able to do that.
00:20:51:20 - 00:20:52:10
I know, I just.
00:20:52:10 - 00:20:55:08
I use my medical
evidence is a story.
00:20:55:08 - 00:20:55:13
Yeah.
00:20:55:13 - 00:20:58:12
They said there's no there's
no proof on it on an assessment
00:20:58:12 - 00:20:59:19
that he's got
memory problems.
00:20:59:19 - 00:21:01:05
I said I've
already supplied it.
00:21:01:05 - 00:21:02:24
It says
that I have.
00:21:02:24 - 00:21:06:08
So yeah, they did lots of
tests on me to prove that as well.
00:21:06:08 - 00:21:09:08
Even almost doing what we would
class as children's games
00:21:09:08 - 00:21:12:13
and trying to remember stories,
I couldn't do it, I couldn't.
00:21:12:13 - 00:21:16:07
I felt silly, but the doctors
were doing it to make sure
00:21:16:07 - 00:21:19:21
that if I was going to have an operation,
what would it do to him afterwards?
00:21:19:21 - 00:21:20:21
Thank goodness
they did.
00:21:20:21 - 00:21:22:24
And you didn't proceed
with the operation?
00:21:22:24 - 00:21:23:22
Yeah, yeah.
00:21:27:02 - 00:21:30:09
So you're wearing
your Sunflower lanyard.
00:21:30:09 - 00:21:33:02
Why do you
wear it?
00:21:33:02 - 00:21:37:04
It's become part of my
routine now, in a way,
00:21:37:04 - 00:21:41:03
that shows that I've
got a hidden condition,
00:21:41:03 - 00:21:46:16
but , I'd like people to actually ask
you if you need any help.
00:21:46:16 - 00:21:48:09
Even if
I don't, it's, if
00:21:48:09 - 00:21:50:03
they can, you know,
if they look at you and say,
00:21:50:03 - 00:21:53:16
and you do get people say it doesn't
the like, is anything wrong with you?
00:21:53:16 - 00:21:57:19
But, you know, a lot of times
I end up having better conversations.
00:21:57:19 - 00:22:01:02
I try to promote
it to people.
00:22:01:02 - 00:22:04:22
I have a friend who
has a condition and I
00:22:04:22 - 00:22:07:04
that they have problems
with their workplace.
00:22:07:04 - 00:22:11:02
And, I said, why don't you talk
about the condition that you have?
00:22:11:02 - 00:22:15:02
And they felt that it was a bit
of a stigma to have to wear something.
00:22:15:02 - 00:22:16:07
I said, it
really isn't.
00:22:16:07 - 00:22:18:14
And it really,
really can help you.
00:22:18:14 - 00:22:22:11
So mine, I wear a few different things
that a lanyard, definitely because
00:22:22:11 - 00:22:27:03
people identify that they relate
to it, but also things where,
00:22:27:03 - 00:22:30:23
they would if I had if I had an
accident because of my condition,
00:22:30:23 - 00:22:34:09
they wouldn't, they wouldn't
do the wrong, first aid on me.
00:22:34:09 - 00:22:36:09
Yeah. Some people might think
you're having a heart attack.
00:22:36:09 - 00:22:40:00
So I have little identifiers
and things to say, but
00:22:40:00 - 00:22:41:24
it's definitely
epilepsy as well.
00:22:41:24 - 00:22:44:21
Yes, I could do more damage
trying to help you.
00:22:44:21 - 00:22:45:14
Yeah.
00:22:45:14 - 00:22:48:09
So do you wear it
whenever you go out? Yes.
00:22:48:09 - 00:22:49:23
And I've
I've got.
00:22:49:23 - 00:22:52:16
At the same time
I wear the band.
00:22:52:16 - 00:22:57:12
And I was involved with the
team at the O2 to really kick off
00:22:57:12 - 00:23:00:19
what they're doing
there with, promoting it now.
00:23:00:19 - 00:23:05:23
So the O2 arena really, really sort of
got going with things like that.
00:23:05:23 - 00:23:07:22
And yeah,
it all works well.
00:23:07:22 - 00:23:09:02
It all ties in.
00:23:09:02 - 00:23:12:00
So whenever I can
tell people to wear one.
00:23:12:00 - 00:23:12:17
Yeah.
00:23:12:17 - 00:23:17:05
The O2 in London, they, you can
when you arrive, you can actually go and,
00:23:17:05 - 00:23:22:04
request to sort of I said to the guy,
can't you with air defendant etc..
00:23:22:04 - 00:23:23:06
That's right.
00:23:23:06 - 00:23:27:20
And they just got their platinum award as well,
the only, first venue in the UK to get it.
00:23:27:20 - 00:23:31:17
So yeah, we, we,
we had a last meeting last, Friday
00:23:31:17 - 00:23:35:11
and yeah, people from all different
backgrounds and disability is brilliant.
00:23:35:11 - 00:23:37:07
And you do that
on a voluntary basis. don’t you?
00:23:37:07 - 00:23:41:03
Yeah, yeah.
If anybody's listening to this
00:23:41:03 - 00:23:43:07
take the Sunflower
to your organization.
00:23:43:07 - 00:23:46:19
We have training and resources
that sit behind the Sunflower.
00:23:46:19 - 00:23:51:17
So everyone at the O2 has been briefed
about what the Sunflower
00:23:51:17 - 00:23:56:17
is, what non-visible disabilities are,
how to interact with Sunflowers.
00:23:56:17 - 00:23:58:07
And we
have webinars.
00:23:58:07 - 00:24:04:06
There's all lots of things that sit behind
this very simple and unique symbol.
00:24:04:06 - 00:24:08:05
It's so much more
than just the Sunflower.
00:24:08:05 - 00:24:12:23
But it's about, you know, is a
way to be seen if you want to be seen.
00:24:12:23 - 00:24:16:08
And you can choose when you
wear it and where you wear it.
00:24:16:08 - 00:24:20:12
And as Murray has explained,
it can bring huge benefits
00:24:20:12 - 00:24:25:02
to the wearer in terms of access
and confidence to go out
00:24:25:02 - 00:24:28:13
and just do
normal daily activities.
00:24:28:13 - 00:24:32:17
In most places, like airports, are a lot
easier to access go through as well.
00:24:32:17 - 00:24:35:18
So I noticed when I was last
there a couple of years ago,
00:24:35:18 - 00:24:38:24
people come straight up to you
and ask if you need any help.
00:24:38:24 - 00:24:42:01
I used to always
hate the X-ray section
00:24:42:01 - 00:24:43:21
so it was so
hectic and busy.
00:24:43:21 - 00:24:45:11
They took me
through a side section.
00:24:45:11 - 00:24:49:05
I was done within a minute,
two minutes guided me all the way through
00:24:49:05 - 00:24:50:23
nice
and easy.
00:24:50:23 - 00:24:52:12
That's
is superb.
00:24:52:12 - 00:24:56:09
It's superb and it's airport
travel is very
00:24:56:09 - 00:25:00:11
can be very draining
and overwhelming.
00:25:00:11 - 00:25:04:07
It's great that the Sunflower
is the perfect travel companion.
00:25:04:07 - 00:25:07:01
I say.
Yeah. It's
00:25:07:01 - 00:25:12:10
so thanks for spending the time
with us today to tell us a little bit
00:25:12:10 - 00:25:18:05
what PIP is and how PIPis a cover
support to you and the process.
00:25:18:05 - 00:25:24:17
We do have another organization who are
Sunflower members, and they are called
00:25:24:17 - 00:25:27:15
they're called PIPP
but it's PIPP
00:25:27:15 - 00:25:31:18
and they support people
who are having trouble with it
00:25:31:18 - 00:25:34:07
to apply for it,
because I think I saw
00:25:34:07 - 00:25:37:10
a statistic that it
was something like
00:25:37:10 - 00:25:42:17
either a 50% or something
of initial applications are rejected.
00:25:42:17 - 00:25:48:04
So if you don't have
the toolkit, I would say like
00:25:48:09 - 00:25:51:21
Murray has to be
able to fight these things
00:25:51:21 - 00:25:55:19
and get all the evidence together
and it's all completely overwhelming.
00:25:55:19 - 00:26:01:16
And if you are having chronic pain
or anxiety or whatever it might be,
00:26:01:16 - 00:26:03:00
this organization.
00:26:03:00 - 00:26:06:09
They are lawyers and they
all have lived experience
00:26:06:09 - 00:26:10:16
a disability, so they can
support disabled claimants
00:26:10:16 - 00:26:14:19
with the process to have a
successful outcome with PIP.
00:26:14:19 - 00:26:17:12
Because, as
Murray has explained,
00:26:17:12 - 00:26:20:15
it is sounds to me
like it is a real fight
00:26:20:15 - 00:26:23:01
and you've really got
to be up for that fight.
00:26:23:01 - 00:26:25:20
Murray thank you
so much for your time
00:26:25:20 - 00:26:30:00
and please give our
best wishes to your wife
00:26:30:00 - 00:26:32:11
and we hope
that you,
00:26:32:11 - 00:26:35:00
she's able to
continue to improve.
00:26:35:00 - 00:26:42:14
And, you know, you guys are able to get to
a concert at some point in the future.
00:26:42:14 - 00:26:42:24
If you are
00:26:42:24 - 00:26:46:22
concerned about any of the subjects
discussed in the podcast, please
00:26:46:22 - 00:26:50:10
follow up and seek support
from your health care practitioner.