27/02/2017 Inside Out South East

The Kent woman who no longer qualifies for mobility benefit

because she has a prosthetic leg.

The most frustrating thing is actually how hard I've worked to

walk, to go back to work, to live my life, and I feel like I've been

penalised for that.

The fed up passenger setting up his alternative

to Southern Rail.

Train had been cancelled.

I had just been left and abandoned.

I thought, "Well, let's see what we can do."

You know, there's got to be room for competition out there.

And the Brighton scientists fighting type

one diabetes.

It was really quite frightening because if I didn't

recognise the symptoms when I was in the pool and blacked out,

potentially I could have drowned.

I'm Natalie Graham with untold stories closer to home.

From all around the south-east, this is

Inside Out.

Hello and welcome to the programme.

Which this week comes to you from Broadstairs in East Kent.

Now, if you struggle to get about then your

car can be a lifeline.

Some disabled people have a motability vehicle.

But others aren't disabled enough, as John Cuthill reports.

Portsdownhill.

A popular spot for petrol heads.

Especially if you've had a few modifications.

Becky, Trevor and Adam are all amputees.

All three have their cars thanks to the Government's motability

scheme.

It hits 40 this year and has around 620,000 car users.

But they fear the brakes could be slammed

on any moment and their wheels taken away.

What you don't realise, how are you going to carry and

balance your burger and your coffee?

Yeah, I have fallen over a few times.

Thank you.

Cheers, now.

You'd be forgiven for thinking our three

amputees would definitely count as disabled.

It is a completely different sensation, doing slopes

and grass.

It is lethal.

But it seems they might not be disabled

enough for the new personal independence payment or Pip, which

has replaced the old disability benefits.

The man who came out to assess me said to me, "If you had

both legs amputated, you wouldn't have any problems

at all getting PIP because you'd be classified as disabled."

And I was like, "So I've got to get both amputated?"

Before Becky lost a leg, she'd had several

operations and been on crutches for seven years.

And she qualified for a car to help her live independently.

But now, with a prosthetic leg, she could lose her car.

They think I might not be disabled enough because

I can now walk with my prosthesis and they don't classify a prosthetic

leg as a walking aid.

Wheelchairs, crutches, anything like that is

classified as a walking aid.

Apparently legs aren't.

Becky had to pay the first ?1,800.

Then the car is funded by a ?55 a week allowance,

but no PIP means no allowance.

I can't drive a normal car, so without the PIP allowance,

I'm going to be very stuck.

Amputees who can walk 20 metres unaided are unlikely to

qualify for motability.

But like Becky said, a prosthetic leg isn't

classed as an aid.

Now that I've walked more than 20 metres, that

means I have to hand the car back.

That's terrible.

There you go.

The new PIP medical assessments are aimed at saving public money.

But Philip Connelly of Disability Rights

UK says removing people's motability cars is a false economy.

Denying them the opportunity to reach places using a mobility car,

an adapted vehicle, has got to be counter-productive.

These people are going to become more reliant upon

statutory services, which is more expensive,

but they also lose a lot of choices and control over their

own lives, so the consequence of that would be to put people...

Make people prisoners of their own properties,

gradually putting them under house arrest.

That's description Leah from

Tonbridge in Kent recognises only too well.

Hello.

Hi, nice to meet you.

Nice to meet you.

You too.

Leah lost a leg in a motorbike accident five years ago.

She got a prosthetic and a motability car,

which allowed her to carry on working full-time.

Just feel the weight of it.

Oh, that is heavier than I thought.

Two months ago, Leah had her PIP assessment.

The decision was that I am not entitled to any mobility at

all.

Leah's car was taken away, so she can no longer work and is now

totally reliant on benefits.

I had to turn down the new job that I had

got.

I had been for interview, was offered the job,

was really excited

about starting it, and due to the location, I couldn't get

there without my vehicle.

I think the most frustrating thing...

Sorry.

I think the most frustrating thing is

actually how hard I've pushed myself throughout

this last five years, how

hard I worked to walk, to go back to work, to live my life,

and I feel like I've been penalised for that.

They've taken it away from me and now they've made it...

You know, impossible, nearly, to live that

life again.

I just don't understand how they can say that I don't have

enough of a disability to warrant mobility.

I just don't understand how they can say people who have

lost their limbs aren't disabled.

Adam lost his leg a year ago after an illness he had had since

childhood.

It is hard to get your head around when the sort of thing

happens.

You never think it is going to happen to you.

Until a member of Parliament, God forbid, is in this

situation, nothing ever at all will get done.

Trevor's entitlement to PIP is worked out after a medical

assessment with Atos, the company applied in the south by the

Department for Work and Pensions.

Today is the day of the D-Day.

This is the time that I am now going into

Atos to see them and be assessed on what they think my disabilities

are, if I can cope around the house, who

does what.

How you feeling?

A bit nervous because every time I have

time now or third time I have

been in to see them, and every time it is not the right answer.

You have got to fight.

Trevor will find out in the next few weeks if he will

lose his car.

In the meantime, here's keen to show just how tough

it will be to get around if it has to go.

If you have this on, it is even worse, getting out,

because it will twist.

You can get caught under the pedal.

Which I have done.

It is not nice when you fall over with your leg hanging out of

the door.

People think you are drunk.

Motability has told us its 620,000 cars are currently being

handed back at an unprecedented rate of roughly 800 a week.

Here is the drop curb.

This is the only one around the area.

If not, I've got to go all the way around which adds time

and effort, so I have got to go slow because the front wheels catch, out

you go.

And I have done that twice.

Trevor wanted to find out from the Government

why so many people are

losing their cars after a PIP assessment.

The Department for Work and Pensions would only give as a

statement.

Having lost her car, Leah was keen to see it.

This is what they say.

Do you want to read that?

"Decisions for PIP are made after considering all

of the evidence from the claimant and their GP.

Anyone who disagrees with a decision can

appeal and in most cases, anyone leaving

the Motability scheme is

eligible for a one off payment of up to ?2000 to help meet their needs.

What you make of that?

Well, it is almost like, "Here you go, have some money,"

pat you on the back and say it will all be OK, have some money.

You know, it is just ridiculous.

Leah plans to appeal the decision.

Motability says more than half of those who do

are getting their cars

back.

I would give everything to have my leg back, to be normal, to

have a normal life.

We want to give back.

We want to go to work.

We don't want to sit at home feeling sorry for ourselves.

That is not what this is about.

It is about getting that help to get on with

life and be part of society.

John Cuthill reporting.

Coming up on Inside Out: can scientists

in Brighton find a cure for type one diabetes?

There was a time in my life where I had to have quite a

build-up before I injected myself because I would scream and cry

constantly when I knew that it was time to do my injections.

Now, strike or no strike, regular users

of Southern Rail have been suffering for years.

If their train is late, they have no alternative.

But one ambitious passenger has decided to change all that.

Many a boy has dreams of running his own

railway, but one man is setting about attempting to turn that dream

into reality.

Steve Williams would like his own grown up train set.

Why?

Because he is a passenger of Southern Rail.

The eureka moment happened at the beginning of

December.

Train had been cancelled, I had just been left and abandoned.

Pretty dire by the train company.

Absolutely disgusted.

Steve used to work as a train dispatcher at

Gatwick Airport station.

Coming from a railway background, I thought,

"Well, let's see what we can do.

"There's got to be room for competition out there."

So this is Steve's big idea.

Instead of moaning about Southern Rail, he wants to set

up his own railway service in competition.

I am doing something about this so people don't...

Are no longer treated this way any more.

So would Southern passengers like an alternative?

Well, it makes more sense to have a choice on the

railway.

Just because you would have the competition which leads to a

better service.

It would be brilliant to have a choice between

who we could go with.

I think Southern Rail are rubbish.

This is all well and good, but of course, it

is simply not possible to set up your own railway.

Hello.

I'm meeting up with Steve at King's Cross

station in London to find out why on Earth he thinks it can be done.

Steve, operating your own train company, it sounds crazy.

It sounds crazy but giving a customer a choice

of who they want to travel with, you've got a smaller company out

there, it can be managed better, you can look

after your customers a lot

better, and you can do great things for them.

Tell me what your company is going to be called and why you have

given it that name?

Basically, we're going back to the days of London,

Brighton and South Coast Railway.

We are going back to the golden era where you cared about your

customers.

So why are we on a train heading to Yorkshire?

Well, we're on our way to meet someone who had the

same crazy idea up north.

Several years ago, Ian wanted to

set up a railway service in competition with Virgin from

Yorkshire in the North East to London.

Hello, Ian.

Hello, there.

I'm Natalie.

Nice to meet you.

How are you?

And this is Steve.

Hello, Steve.

Nice to meet you.

You will find a lot of people will tell you

it can't be done.

And there are times when you start to think, "Have

they got a point?"

Particularly if it looks like you're not moving

forward.

But here's the thing.

The Government gives out franchises to

train companies to operate services in various parts of the country.

But there is something called open access operation.

It is technically possible for a company to apply for

open access to run a service in competition with the existing

franchise holder, as long as they add something

extra like stopping at

stations the existing service doesn't stop at.

This is exactly what Ian did and the result was

Grand Central Trains.

If you look at traditional type open access, which is

where Grand Central came from, we have opened up areas

of the country that long ago lost all their direct

services to London.

There it goes.

Do you feel proud when you see that go past?

I do.

Actually, still, it gives me a bit of a tingle, still.

Not quite as much as the first days, but...

The very first train went through with less

than 30 people on it.

Grand Central now runs nine daily services

from the North East of West Yorkshire to central London.

Other open access operators include Eurostar

and the Heathrow Express.

So Steve wants to do the same in competition

with Southern Rail and it is technically possible, but Ian has

worked as an entrepreneur in the railway industry for decades.

Steve, on the other hand, is just a guy

with a vision.

As I'm sure Steve is finding, everybody is telling you it

won't work.

"You won't make any money."

And we found it will.

It takes a bit of time.

If you get your plans right, it will.

Ian says the rules for open access operation

have eased slightly, so

he's actually now looking for opportunities down at the other

end of the country, namely Southampton to London, to compete

with South Western trains.

One of the other things that has recently

happened, a decision last by the regulator on the east coast,

allowed head-to-head competition for the

very first time, based upon pricing.

Now, nobody in the South really has any price

competition, certainly south of

the river, which is why your proposal has come along as well as

the new journeys you offer and why we have also got

an application currently live

south of the river.

Proposed mainly to relieve passenger congestion

because of significant overcrowding even on that route.

But also to bring some price competition, which

is long, long overdue.

We asked the Department for Transport about open

access operations and this is what they told us.

"We have a highly competitive rail franchising system.

"For competition to work effectively, both

"the existing franchises and

"open access operators need a level playing field."

We also asked Southern Rail what they felt about

Steve's plans to set himself up in competition with them.

But they declined to comment.

So one frustrated Southern Rail passenger

has a dream to set up an alternative.

Some would say he is inexperienced and has no financial

backing.

But Ian, the expert of open access operation, has got some words

of encouragement.

It is a difficult one.

You've got to believe it yourself first of all.

You will have to do, as I am sure you are doing, a

detailed business plan and proposition.

Bearing in mind that most open access operators have been

successful and are successful then there is no reason why you couldn't

find somebody who would be prepared to invest in your proposal.

It sounds like you've got a mountain to

climb, Steve.

Have you started?

Started to climb that mountain, yes.

One day going to reach the top.

I can't wait to see the view on the other

side of that mountain, believe

me.

It is going to be absolutely beautiful.

Now, 10,000 people have type one diabetes in the south-east.

It is a disease that can strike young and can last a lifetime.

But solutions are being found.

Rachel Royce reports.

As a child, Penny from Brighton hated

needles, but she had to have at least five injections a day.

There was a time in my life when I had to

have quite a build-up before I injected myself

because I would just scream and cry constantly when I

knew that it was time to do my injections.

And I just really, really hated it.

She was diagnosed with type one diabetes when she was

six.

She was rushed to hospital for emergency treatment after alarming

symptoms appeared on a family holiday.

This is when we went to Center Parcs.

But that little girl there with those big eyes I now

recognise as a very sick little girl.

I look kind of scary.

You do.

You've got enormous eyes and you look just ill.

It was really horrible and we just used to have

to grin and bear it.

I would often cry when she was crying.

But it had to be done - she would die without

insulin.

So it wasn't a question.

One thing that can happen with diabetes is something called

hypoglycaemic episodes.

That is when your blood sugar falls so low it is

possible to suffer from blackouts.

Leslie from Bexhill has suffered from type one diabetes since

she was a child and knows all about so-called hypos.

It was really quite frightening because I would find

myself just waking up on the kitchen floor and being completely

disorientated as to which time of day it was, which day it was, where

I was.

And there was always the risk that one day I wasn't going to wake

up, I would actually die.

The human body is an incredible biological

machine and it is powered by our ability to convert food into energy,

enabling us to move our bodies.

Whether that is just breathing and thinking or taking part

in extreme exercise.

But we need the hormone insulin to do it.

There are two types of diabetes.

Type one occurs when the body stops producing

insulin.

Type two when the body stops reacting properly to insulin.

Scientists around the world are trying to find solutions to

diabetes.

Type one presents particular challenges.

We will be looking at pioneering research into

the disease being carried out here in the South East.

Professor Adrian Bowen, who is based at

Brighton University, has dedicated his working life, more than 40

years, to try to help find answers to the problem of diabetes.

Hi, Professor.

Thank you for joining us.

You are very welcome.

Is there anyway we can prevent people from

getting diabetes?

In the case of type two diabetes, absolutely, yes.

With lifestyle change.

Type one?

That's a little more complicated in that it is a genetically based

condition.

But we now understand quite a bit about the disease

process.

And by understanding the disease process, we have an

opportunity to identify parts of the process

where we can target therapies.

At Brighton University, the small team in the diabetic research

unit, led by Adrian Bone, are adding to international efforts to find a

cure.

They helped identify that it is a virus that triggers type

one.

It is only with some developments in technique and

technology that allowed us to actually discover some viral

particles present in some of the insulin producing cells.

But does open the way for a vaccine?

Potentially, yes, it does.

Or you understand the downstream things that are going on

Or you understand the downstream things that are going on

after the viral infection has taken place and that is where

activities at the moment.

Could that be a possible cure for type one diabetes?

I would love to think so, yes, I am enough

of an optimist to think that that is where the cure will come, yes.

But as well as cutting-edge microbiology

research, the team also works in the community to educate people

on how to manage diabetes or avoid it altogether.

Doctor Wendy McFarlane has recently been trialling

equipment to help people understand the effect of food on their

metabolism.

One of these is the continuous glucose monitoring

system.

Which is a nice little system that tells you what your

glucose concentrations are all the time.

So if you know what a big bottle of fizzy pop is doing to your

blood glucose levels and you see that big spike in sugar, you know

what it is doing to your metabolism.

You know how you feel at that point and you can match it up with what it

is doing.

Continuous glucose monitors are still on trial and not

widely available.

Penny still tests blood sugar levels by her finger.

But a big improvement in her life has been the introduction of a pump

to deliver the insulin she needs instead of daily injections.

I just inject a cannula in once every two days and

then I can continuously decide how much insulin to give and it is

absolutely just given me so much more independence and so much more

control.

Can you show me the pump?

Yeah.

So I've got this here, this tiny little insulin pump.

And it is just connected with a tube of insulin,

and it goes into a cannula and I can do just press a few buttons and it

will deliver however much I want.

An artificial pancreas.

That is an electronic device that can both read

blood sugars and deliver insulin is being trialled in the UK

but is still a few years off, and so far

there is still no cure or vaccine for type one diabetes.

But Lesley feels she has had the closest

thing to a cure.

She has had an unusual type of transplant and now

it means she is able to swim.

Before the operation, she would have unpredictable blackouts.

It meant that I went straight from walking

round to blacking out, and of course if I didn't

recognise the symptoms

when I was in the pool and I blacked out, potentially I could have

drowned.

After the transplant, I was able to have some adult swimming

lessons and now I can quite happily splash up and down the

pool, which is great.

The transplant Lesley had was a relatively new

procedure called an islet transplant, where cells from a

donated pancreas pancreas are transferred into the diabetic

patient.

It costs around ?40,000 per patient, but the benefits for most

people have been worth it.

Professor Bone is a big fan.

Of those 180 patients who have had an islet

transplant, 98% of those, that is virtually all of them,

have not had a single hypoglycaemic episode since

they were transplanted.

It really has been life transforming.

I am so grateful to the people who allowed

their relatives' organs to be used to enable me to have the transplant

because it really has made such a total difference to my life.

I can now live and do whatever I want to

do whenever I want to do it without having any worries.

But as is often the case with transplants, there is

a shortage of donors.

That may be resolved in the future with stem

cell research.

But at the moment, the team at Brighton is

concentrating on another way forward.

Their latest research involves using space age technology.

Right, Rachel, here we have got our throughput by a reactor system.

It is based loosely around technology

that was developed by Nasa to try and mimic

the lack of gravity on the

International Space Station.

So what we have got here is a system that

will actually allow us to grow and maintain cells

in negative gravity, so in other words they are

free-floating and in that way they are kept much more healthy and

metabolically they are able to perform better.

And so with this system, there could be more islet

available and ever more transplants.

That is precisely the idea.

The success of a graft is directly related

to the quality and number of

the islets that are transplanted.

And your work could help make it available for a lot more people?

We hope so because the very exciting thing that we have just done very,

very recently is that we have managed to make this in a

transportable form.

This equipment can now be put into a car or an

ambulance or everything else and the islets,

after they have left the

processing laboratory, can be placed in a portable one

of these and can be taken to the

transplant centres, where the islets will arrive in absolutely tiptop

shape.

So far, Penny isn't eligible for an islet transplant.

Islet transplants sound incredible and

they sound like they would change my life

completely, but I know that at

this point, I'm not in need of one, because my diabetes is not having a

terrible impact on my life.

I can survive with that.

Penny feels that there are other people that would

need it more and we know it is a very, very expensive operation at

the moment, but I have my fingers crossed

that the price of that, the

availability of that, will change so that all type one

diabetics including my daughter can have an

islet transplant.

Whilst the ultimate cure for type one diabetes is still

some way off, breakthroughs are being made all the time.

And some breathtaking developments are being

enjoyed by people with the disease in the south-east.

Now, for more information about the programme, go

to our live pages on the BBC News website.

You can watch the show again on iPlayer if go to the website.

Coming up next week - how clean is the air

that we breathe in the Southeast?

It is not very nice living around here because of the pollution

so I have just got to sit here and suffer.

Why a front room is becoming the new venue for bands.

I started posting house gigs about two

and a quarter years ago because I really missed having

a social life and I really missed live music.

And we meet our eight legged friends in

the English Channel.

It takes a couple of months to build up this

sort of trust between the keeper and an octopus but she loves it.

That is it from us for tonight from Broadstairs.

Thank you for watching.

See you next week.

Hello, I'm Riz Lateef with your 90-second update.

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more because of new rules.

The changes mean higher compensation pay-outs.