The Sunflower Conversations

PIP with Murray Goulder

Hidden Disabilities Sunflower

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.


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Hosted by Chantal Boyle, Hidden Disabilities Sunflower.
 
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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.

 

00:01:16:03 - 00:01:21:02

I am in 

my midlife,

 

00:01:21:02 - 00:01:24:16

and, I have 

got brown skin.

 

00:01:24:16 - 00:01:30:02

I've got long brown

curly hair, and I am wearing,

 

00:01:30:02 - 00:01:32:05

clear framed

glasses.

 

00:01:32:05 - 00:01:34:15

I have 

makeup on.

 

00:01:34:15 - 00:01:38:08

I've got a very multi-colored

sleeveless blouse

 

00:01:38:08 - 00:01:43:03

on, and I have an earring in 

my nose and in my ears.

 

00:01:43:03 - 00:01:44:23

So, Murray, 

over to you.

 

00:01:44:23 - 00:01:46:10

I identify as

 

00:01:46:10 - 00:01:48:22

‘he’

I am white.

 

00:01:48:22 - 00:01:50:16

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.

 

00:01:55:18 - 00:01:59:10

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

 

00:02:10:00 - 00:02:11:15

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.

 

00:02:39:11 - 00:02:41:20

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.

 

00:02:48:14 - 00:02:49:17

It's very, 

very quick.

 

00:02:49:17 - 00:02:52:09

It's not

nice.

 

00:02:52:09 - 00:02:54:03

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

 

00:03:14:02 - 00:03:16:10

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.

 

00:03:22:06 - 00:03:25:07

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.

 

00:03:28:14 - 00:03:32:11

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.

 

00:03:46:00 - 00:03:47:11

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.

 

00:03:51:20 - 00:03:53:14

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.

 

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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?

 

00:05:15:15 - 00:05:18:04

Do you need help

with cooking?

 

00:05:18:04 - 00:05:20:04

Do you

need help

 

00:05:20:04 - 00:05:23:14

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.

 

00:05:34:10 - 00:05:36:13

So I need I do 

need help with that.

 

00:05:36:13 - 00:05:39:08

But that's more 

memory impacted.

 

00:05:39:08 - 00:05:39:24

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

 

00:05:54:03 - 00:05:59:14

And so even if she has to have calls

to PIP people, she has somebody

 

00:05:59:14 - 00:06:03:01

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.

 

00:07:20:23 - 00:07:25:23

Yeah, disability and having 

to access medication.

 

00:07:25:23 - 00:07:28:07

I don't think 

many of us

 

00:07:28:07 - 00:07:33:15

appreciate the financial cost

associated with the prescription.

 

00:07:33:15 - 00:07:37:11

And all of that, because it 

would be an assumption

 

00:07:37:11 - 00:07:43:14

that if you have a life long condition

or even if it's temporary,

 

00:07:43:14 - 00:07:46:11

if that is 

 significantly affecting

 

00:07:46:11 - 00:07:49:11

your life,  or it's going 

to keep you alive.

 

00:07:49:12 - 00:07:53:08

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

 

00:08:14:13 - 00:08:18:20

a lot of those people from working,

or at least as much as they are.

 

00:08:18:20 - 00:08:19:03

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

 

00:08:26:00 - 00:08:29:11

for about the last 12 years

because I had no idea what it was.

 

00:08:29:11 - 00:08:30:10

I didn't 

even know.

 

00:08:30:10 - 00:08:32:12

So it's not I'm not

someone who's just claimed

 

00:08:32:12 - 00:08:36:08

and claimed and claimed,

and I think they look at the wrong people.

 

00:08:36:08 - 00:08:41:07

And there's also about 20% of people out

there without conditions that could work.

 

00:08:41:07 - 00:08:43:14

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.

 

00:09:31:23 - 00:09:35:09

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. 

 

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