Personal Independent Payment, PIP with Murray Goulder

Speakers: 

Chantal Boyle

Murray Goulder

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Welcome to the 

Sunflower Conversations

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My name is Chantal, and today I have

 the pleasure of welcoming Murray Goulder

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A back to the Sunflower

Conversations.

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We first met in 2023 with Daniel Jennings

from Epilepsy Action,

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and we learnt about the type 

of epilepsy that Murray has,

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as well as the services

that Epilepsy Action provides.

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So do check out that episode 

on this on the podcast platform.

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Some of our conversations,

it's really great. Very informative.

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Today the conversation

is about Personal Independence

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Payment PIP what it is, who is eligible

and how it supports disabled people.

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So Murray is joining us to talk from

a perspective of his lived experience,

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you know, 

using PiP and,

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the benefits that

it provides to him.

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So welcome. Murray. 

How are you?

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I'm fine

thanks Chantal

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Thanks for having me back. 

I'm very well.

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And first of all,

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we're going to give a

visual description, Murray,

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so that anybody listening to

this is able to kind of get

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an idea of what I've look

like, so I'll go first.

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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.

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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.

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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

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with a device on the right 

hand side of my head.

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Thank you.

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Murray and Murray is also wearing

his green Sunflower lanyard

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with the yellow 

sunflowers on it.

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So let's 

get started.

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So what type of epilepsy do you have

and what symptoms do you experience?

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I started to have seizures

about 30 years ago.

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I experienced 

Absence seizures.

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I've had a few tonic clonics

but with the absence seizures,

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I can lose control of

my autonomy.

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or anything from 20 seconds

to two minutes.

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And. Yeah the

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the build up to it if I,

if I get any sort of build up at all,

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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?

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What happens in terms of the symptoms

when you're having your seizure?

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I've been.

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I've been told that, I can continue

to walk if I'm already walking.

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So if I'm going to work,

I can continue to cross roads.

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I have I sometimes 

can dribble, I can drool

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I can,

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I can mumble, 

fidget.

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And. Yeah, that 

that's about it.

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There's been instance

where I've almost choked in my sleep.

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Right.

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And I remember that 

when we've met before.

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You said that that you've been 

worried about

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having a 

seizure and

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walking onto the train tracks

or crossing the road

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because there's no awareness

from as far as you're

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as far as you are in your body, you're

unaware of what's happening around you.

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Solutely from 

outside.

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Some people would 

think potentially

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or even drunk, and I've 

been accused of that before.

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Which must 

be awful.

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Yeah.

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It's I well, wearing my 

lanyard and stuff like that?

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Especially my Sunflower

one I’ll wear, as well as the bands.

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It's the only 

thing you can do.

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You know, now that I've got a device

on my head, it might give an indicator.

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Yet a lot of people 

think it's a hearing aid.

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Yeah, it's getting some 

interesting conversations.

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So what exactly is PIP

personal independence Payment.

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And under the current rules,

who's eligible for it?

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So first of all, what is 

Personal Independent Payment.

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Please explain.

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Right.

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PIP is there to assist people 

who have conditions that affect

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their mobility, 

or affects the condition

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if it affects their, 

daily activities.

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So if I keep it, you know, 

example for me,

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mobility is an issue because 

of the seizures whilst I walk.

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They ask you a question like,

can you walk over 200m?

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Yes, I can,

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but I've walked further during a seizure,

so it does affect me getting around.

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We no longer have a car and

in our household so that, you know,

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I need help with, transport, 

and safe transport for me.

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So sometimes it can be

if I'm going to my workplace, direct,

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via a taxi, and people will say, oh,

that's expensive, but it's the safest way

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for me to 

travel A to B.

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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,

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areas within that.

Taking medications is another one.

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And, my example for

that would be my memory.

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I've actually accidentally overdosed

or missed, medications.

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So I need I do 

need help with that.

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But that's more 

memory impacted.

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That's 

basically it.

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There's two

parts to it.

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Yeah, that's 

really serious, isn't it?

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We spoke 

to

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Lydia, who is a journalist 

on the podcast,

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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

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element of 

of that.

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So there are different ways,

aren't there, that that it can help.

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So how much of a 

lifeline is PIP for you?

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For me 

personally, it's,

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it's I do need it

I require it.

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you know, a lot of the talk at

the moment is about trying

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to get people back to work,

and the rhetoric, I think is wrong because

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it's anything now between 53

and 60% of people with conditions do work.

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So for me,

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the mobility element

goes towards my travel.

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That actually doesn't

even cover it, doesn't touch it.

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So I, I also use 

the daily living

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part to pay towards medications are aren't

prescribed

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side effects from my own

epilepsy can be severe headaches.

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I take preventative medication

that is prescribed,

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but if you have anything else,

you just have to take,

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ibuprofen. 

You know, any,

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any other type of over-the-counter

painkiller, and it's expensive.

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Epilepsy is an 

expensive condition.

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So I find if I lost it, 

it would probably.

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I'd probably be looking for £500 to £700

a month just for having epilepsy.

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That's just

so cruel.

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I don't think unless you are living

with a health condition.

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Yeah, disability and having 

to access medication.

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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

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your life,  or it's going 

to keep you alive.

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You would assume

that that would be

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something that everybody 

would have access to.

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Yeah, I.

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Think that's a catch 22 situation

where you you are employed,

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but if you 

had to spend

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that amount of money on your medication,

then you wouldn't be able to work.

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Would you. 

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That's that's exactly the point

I've thrown over, is that if I

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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

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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.

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Let's get 100% of people working

without a condition first,

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and then work 

on the rest. So yeah.

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And so

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you didn't you didn't know 

about it until the last decade.

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No. 

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What is the process of applying 

for it like I've heard a lot of things

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I'd like to hear from your perspective,

what is the process of applying for it?

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Originally it was an interview

over the phone, the old system.

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Then when 

they moved,

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the DLA, the disability living 

allowance  to PIP,

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they said, you're going to 

be coming off of this.

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You need to 

be reassessed again.

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So this is this is back in that,

you know, this is years ago.

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But you would you would 

write to apply then I would

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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.

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So, washing 

and stuff.

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So it's basically

what are the risks to you,

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and cooking would be one for me.

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I don't, I, I can cook, I can make 

food, but I've got to be very,

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very careful because, you know,

sharp knives and stuff like that.

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And one of my reviews, it came back that

I, it was okay, I could use a microwave.

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My argument back 

was, that's expensive.

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And also, I find it offensive that you 

think that anyone with conditions

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like this would have to use a microwave

and just eat those sorts of foods?

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So you apply

that way,

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then you can, so my 

case get knocked back.

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And then you 

have to escalate

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that eventually you go to a 

tribunal and you win your case.

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I've done 

it twice.

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I'm expecting a third one

this year, even with the changes.

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But just out of interest,

I thought I'd show you my paperwork.

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And then if you can see how thick 

that is, that's all my paperwork.

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Murray’s 

holding up a

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ring binder, the likes I haven't 

seen since I was at college.

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And it's very

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thick, and it is 

rammed full of paper.

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Yeah

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That includes further

 medical evidence.

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Evidence of

tests

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I've had. Psychological tests, that prove

that I was having problems with my memory.

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And also proof

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that I could not have an operation

resective surgery to stop the epilepsy.

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Because if I had it on my type

I would actually lose

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the use of my arm,

my leg.

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I would completely lose my memory,

and I'd have to learn to speak again.

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So my argument was, I don't think

that's really an option for me.

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I'll know from medication and monitoring

that, but I'm doing the best I can.

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It's yes, 

I can do.

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when you're

already,

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you know, 

navigating life

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as somebody who lives

with epilepsy, experiencing

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quite the memory 

loss, the

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it must be a continual fear

in the back of your mind, like,

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am I going to do something to really

injure myself or somebody else?

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Yeah.

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Then to have to be 

advocating for yourself

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in such a manner,

it must take so much energy.

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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?

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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.

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So it's all about that honesty thing.

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And don't let people tell you

what they have got no idea about.

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So if you've got someone 

assessing you, I got assessed

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and the person said

Murray had a good gait,

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and I said, that's got nothing

to do with my when I have a seizure.

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I don't know 

what I looked like.

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I saw one recently on a video

on a ring camera when I fell over.

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And I've never, ever seen 

myself have a seizure.

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They said that I was dressed well,

I was well kempt.

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I said, well, that's 

just how I dress.

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I, you know, do you expect

someone of epilepsy to have odd socks?

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And then, one of 

the other ones was,

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they set up to hold

a reasonable conversation.

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At that time, I said, I'm a coach.

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I have to be

able to do it.

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If during seizure, it could

be complete gobbledygook.

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I've got 

no idea.

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So they base it on what they say

at the time and not on the evidence.

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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.

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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.