0:00:05 > 0:00:08The Kent woman who no longer qualifies for mobility benefit
0:00:08 > 0:00:09because she has a prosthetic leg.
0:00:09 > 0:00:14The most frustrating thing is actually how hard I've worked to
0:00:14 > 0:00:17walk, to go back to work, to live my life, and I feel like I've been
0:00:17 > 0:00:23penalised for that.
0:00:23 > 0:00:29The fed up passenger setting up his alternative
0:00:29 > 0:00:30to Southern Rail.
0:00:30 > 0:00:31Train had been cancelled.
0:00:31 > 0:00:33I had just been left and abandoned.
0:00:33 > 0:00:35I thought, "Well, let's see what we can do."
0:00:35 > 0:00:37You know, there's got to be room for competition out there.
0:00:37 > 0:00:39And the Brighton scientists fighting type
0:00:39 > 0:00:42one diabetes.
0:00:42 > 0:00:46It was really quite frightening because if I didn't
0:00:46 > 0:00:49recognise the symptoms when I was in the pool and blacked out,
0:00:49 > 0:00:52potentially I could have drowned.
0:00:52 > 0:00:54I'm Natalie Graham with untold stories closer to home.
0:00:54 > 0:00:56From all around the south-east, this is
0:00:56 > 0:01:06Inside Out.
0:01:13 > 0:01:16Hello and welcome to the programme.
0:01:16 > 0:01:19Which this week comes to you from Broadstairs in East Kent.
0:01:19 > 0:01:22Now, if you struggle to get about then your
0:01:22 > 0:01:27car can be a lifeline.
0:01:27 > 0:01:32Some disabled people have a motability vehicle.
0:01:32 > 0:01:37But others aren't disabled enough, as John Cuthill reports.
0:01:37 > 0:01:38Portsdownhill.
0:01:38 > 0:01:42A popular spot for petrol heads.
0:01:42 > 0:01:52Especially if you've had a few modifications.
0:01:54 > 0:02:00Becky, Trevor and Adam are all amputees.
0:02:00 > 0:02:02All three have their cars thanks to the Government's motability
0:02:03 > 0:02:03scheme.
0:02:03 > 0:02:09It hits 40 this year and has around 620,000 car users.
0:02:09 > 0:02:13But they fear the brakes could be slammed
0:02:13 > 0:02:15on any moment and their wheels taken away.
0:02:15 > 0:02:19What you don't realise, how are you going to carry and
0:02:19 > 0:02:20balance your burger and your coffee?
0:02:20 > 0:02:22Yeah, I have fallen over a few times.
0:02:22 > 0:02:23Thank you.
0:02:23 > 0:02:24Cheers, now.
0:02:24 > 0:02:26You'd be forgiven for thinking our three
0:02:26 > 0:02:29amputees would definitely count as disabled.
0:02:29 > 0:02:32It is a completely different sensation, doing slopes
0:02:32 > 0:02:32and grass.
0:02:32 > 0:02:36It is lethal.
0:02:36 > 0:02:39But it seems they might not be disabled
0:02:39 > 0:02:41enough for the new personal independence payment or Pip, which
0:02:41 > 0:02:44has replaced the old disability benefits.
0:02:44 > 0:02:48The man who came out to assess me said to me, "If you had
0:02:48 > 0:02:56both legs amputated, you wouldn't have any problems
0:02:56 > 0:02:58at all getting PIP because you'd be classified as disabled."
0:02:58 > 0:03:01And I was like, "So I've got to get both amputated?"
0:03:01 > 0:03:07Before Becky lost a leg, she'd had several
0:03:07 > 0:03:10operations and been on crutches for seven years.
0:03:10 > 0:03:13And she qualified for a car to help her live independently.
0:03:13 > 0:03:16But now, with a prosthetic leg, she could lose her car.
0:03:16 > 0:03:21They think I might not be disabled enough because
0:03:21 > 0:03:25I can now walk with my prosthesis and they don't classify a prosthetic
0:03:25 > 0:03:26leg as a walking aid.
0:03:26 > 0:03:27Wheelchairs, crutches, anything like that is
0:03:27 > 0:03:28classified as a walking aid.
0:03:28 > 0:03:33Apparently legs aren't.
0:03:33 > 0:03:38Becky had to pay the first ?1,800.
0:03:38 > 0:03:43Then the car is funded by a ?55 a week allowance,
0:03:43 > 0:03:49but no PIP means no allowance.
0:03:49 > 0:03:52I can't drive a normal car, so without the PIP allowance,
0:03:52 > 0:03:56I'm going to be very stuck.
0:03:56 > 0:04:00Amputees who can walk 20 metres unaided are unlikely to
0:04:00 > 0:04:02qualify for motability.
0:04:02 > 0:04:05But like Becky said, a prosthetic leg isn't
0:04:05 > 0:04:10classed as an aid.
0:04:10 > 0:04:12Now that I've walked more than 20 metres, that
0:04:12 > 0:04:14means I have to hand the car back.
0:04:14 > 0:04:15That's terrible.
0:04:15 > 0:04:20There you go.
0:04:20 > 0:04:26The new PIP medical assessments are aimed at saving public money.
0:04:26 > 0:04:35But Philip Connelly of Disability Rights
0:04:35 > 0:04:38UK says removing people's motability cars is a false economy.
0:04:38 > 0:04:42Denying them the opportunity to reach places using a mobility car,
0:04:42 > 0:04:44an adapted vehicle, has got to be counter-productive.
0:04:44 > 0:04:46These people are going to become more reliant upon
0:04:46 > 0:04:47statutory services, which is more expensive,
0:04:47 > 0:04:50but they also lose a lot of choices and control over their
0:04:50 > 0:04:53own lives, so the consequence of that would be to put people...
0:04:53 > 0:04:55Make people prisoners of their own properties,
0:04:55 > 0:05:03gradually putting them under house arrest.
0:05:03 > 0:05:05That's description Leah from
0:05:05 > 0:05:07Tonbridge in Kent recognises only too well.
0:05:07 > 0:05:10Hello.
0:05:10 > 0:05:12Hi, nice to meet you.
0:05:12 > 0:05:13Nice to meet you.
0:05:13 > 0:05:17You too.
0:05:17 > 0:05:21Leah lost a leg in a motorbike accident five years ago.
0:05:21 > 0:05:22She got a prosthetic and a motability car,
0:05:22 > 0:05:25which allowed her to carry on working full-time.
0:05:25 > 0:05:27Just feel the weight of it.
0:05:27 > 0:05:36Oh, that is heavier than I thought.
0:05:36 > 0:05:43Two months ago, Leah had her PIP assessment.
0:05:43 > 0:05:46The decision was that I am not entitled to any mobility at
0:05:46 > 0:05:49all.
0:05:49 > 0:05:52Leah's car was taken away, so she can no longer work and is now
0:05:52 > 0:05:53totally reliant on benefits.
0:05:53 > 0:05:56I had to turn down the new job that I had
0:05:56 > 0:05:57got.
0:05:57 > 0:05:59I had been for interview, was offered the job,
0:05:59 > 0:06:00was really excited
0:06:00 > 0:06:03about starting it, and due to the location, I couldn't get
0:06:03 > 0:06:04there without my vehicle.
0:06:04 > 0:06:05I think the most frustrating thing...
0:06:05 > 0:06:06Sorry.
0:06:06 > 0:06:08I think the most frustrating thing is
0:06:08 > 0:06:10actually how hard I've pushed myself throughout
0:06:10 > 0:06:11this last five years, how
0:06:11 > 0:06:14hard I worked to walk, to go back to work, to live my life,
0:06:14 > 0:06:16and I feel like I've been penalised for that.
0:06:16 > 0:06:19They've taken it away from me and now they've made it...
0:06:19 > 0:06:21You know, impossible, nearly, to live that
0:06:21 > 0:06:24life again.
0:06:24 > 0:06:27I just don't understand how they can say that I don't have
0:06:27 > 0:06:37enough of a disability to warrant mobility.
0:06:40 > 0:06:42I just don't understand how they can say people who have
0:06:42 > 0:06:50lost their limbs aren't disabled.
0:06:50 > 0:06:53Adam lost his leg a year ago after an illness he had had since
0:06:53 > 0:06:54childhood.
0:06:54 > 0:06:57It is hard to get your head around when the sort of thing
0:06:57 > 0:06:58happens.
0:06:58 > 0:07:01You never think it is going to happen to you.
0:07:01 > 0:07:05Until a member of Parliament, God forbid, is in this
0:07:05 > 0:07:08situation, nothing ever at all will get done.
0:07:08 > 0:07:14Trevor's entitlement to PIP is worked out after a medical
0:07:14 > 0:07:17assessment with Atos, the company applied in the south by the
0:07:17 > 0:07:18Department for Work and Pensions.
0:07:18 > 0:07:20Today is the day of the D-Day.
0:07:20 > 0:07:22This is the time that I am now going into
0:07:22 > 0:07:25Atos to see them and be assessed on what they think my disabilities
0:07:25 > 0:07:27are, if I can cope around the house, who
0:07:27 > 0:07:29does what.
0:07:29 > 0:07:29How you feeling?
0:07:29 > 0:07:31A bit nervous because every time I have
0:07:31 > 0:07:33time now or third time I have
0:07:33 > 0:07:37been in to see them, and every time it is not the right answer.
0:07:37 > 0:07:39You have got to fight.
0:07:39 > 0:07:41Trevor will find out in the next few weeks if he will
0:07:42 > 0:07:44lose his car.
0:07:44 > 0:07:47In the meantime, here's keen to show just how tough
0:07:47 > 0:07:54it will be to get around if it has to go.
0:07:54 > 0:07:57If you have this on, it is even worse, getting out,
0:07:57 > 0:07:58because it will twist.
0:07:58 > 0:08:00You can get caught under the pedal.
0:08:00 > 0:08:01Which I have done.
0:08:01 > 0:08:04It is not nice when you fall over with your leg hanging out of
0:08:04 > 0:08:05the door.
0:08:05 > 0:08:14People think you are drunk.
0:08:14 > 0:08:17Motability has told us its 620,000 cars are currently being
0:08:17 > 0:08:19handed back at an unprecedented rate of roughly 800 a week.
0:08:20 > 0:08:21Here is the drop curb.
0:08:21 > 0:08:23This is the only one around the area.
0:08:23 > 0:08:26If not, I've got to go all the way around which adds time
0:08:26 > 0:08:29and effort, so I have got to go slow because the front wheels catch, out
0:08:29 > 0:08:30you go.
0:08:30 > 0:08:32And I have done that twice.
0:08:32 > 0:08:34Trevor wanted to find out from the Government
0:08:34 > 0:08:38why so many people are
0:08:38 > 0:08:40losing their cars after a PIP assessment.
0:08:40 > 0:08:43The Department for Work and Pensions would only give as a
0:08:43 > 0:08:44statement.
0:08:44 > 0:08:46Having lost her car, Leah was keen to see it.
0:08:46 > 0:08:47This is what they say.
0:08:47 > 0:08:51Do you want to read that?
0:08:51 > 0:08:53"Decisions for PIP are made after considering all
0:08:53 > 0:08:55of the evidence from the claimant and their GP.
0:08:55 > 0:08:57Anyone who disagrees with a decision can
0:08:57 > 0:09:02appeal and in most cases, anyone leaving
0:09:02 > 0:09:05the Motability scheme is
0:09:05 > 0:09:08eligible for a one off payment of up to ?2000 to help meet their needs.
0:09:08 > 0:09:17What you make of that?
0:09:17 > 0:09:19Well, it is almost like, "Here you go, have some money,"
0:09:19 > 0:09:23pat you on the back and say it will all be OK, have some money.
0:09:23 > 0:09:24You know, it is just ridiculous.
0:09:24 > 0:09:26Leah plans to appeal the decision.
0:09:26 > 0:09:29Motability says more than half of those who do
0:09:29 > 0:09:29are getting their cars
0:09:29 > 0:09:30back.
0:09:30 > 0:09:34I would give everything to have my leg back, to be normal, to
0:09:34 > 0:09:35have a normal life.
0:09:35 > 0:09:36We want to give back.
0:09:36 > 0:09:37We want to go to work.
0:09:37 > 0:09:40We don't want to sit at home feeling sorry for ourselves.
0:09:40 > 0:09:42That is not what this is about.
0:09:42 > 0:09:44It is about getting that help to get on with
0:09:44 > 0:09:54life and be part of society.
0:09:54 > 0:10:04John Cuthill reporting.
0:10:07 > 0:10:09Coming up on Inside Out: can scientists
0:10:09 > 0:10:11in Brighton find a cure for type one diabetes?
0:10:11 > 0:10:14There was a time in my life where I had to have quite a
0:10:14 > 0:10:17build-up before I injected myself because I would scream and cry
0:10:17 > 0:10:20constantly when I knew that it was time to do my injections.
0:10:20 > 0:10:23Now, strike or no strike, regular users
0:10:23 > 0:10:25of Southern Rail have been suffering for years.
0:10:25 > 0:10:28If their train is late, they have no alternative.
0:10:28 > 0:10:38But one ambitious passenger has decided to change all that.
0:10:41 > 0:10:48Many a boy has dreams of running his own
0:10:48 > 0:10:51railway, but one man is setting about attempting to turn that dream
0:10:51 > 0:10:52into reality.
0:10:52 > 0:10:55Steve Williams would like his own grown up train set.
0:10:55 > 0:10:59Why?
0:10:59 > 0:11:01Because he is a passenger of Southern Rail.
0:11:01 > 0:11:03The eureka moment happened at the beginning of
0:11:03 > 0:11:04December.
0:11:04 > 0:11:06Train had been cancelled, I had just been left and abandoned.
0:11:06 > 0:11:11Pretty dire by the train company.
0:11:11 > 0:11:13Absolutely disgusted.
0:11:13 > 0:11:15Steve used to work as a train dispatcher at
0:11:15 > 0:11:19Gatwick Airport station.
0:11:19 > 0:11:27Coming from a railway background, I thought,
0:11:27 > 0:11:29"Well, let's see what we can do.
0:11:29 > 0:11:31"There's got to be room for competition out there."
0:11:31 > 0:11:33So this is Steve's big idea.
0:11:33 > 0:11:36Instead of moaning about Southern Rail, he wants to set
0:11:36 > 0:11:37up his own railway service in competition.
0:11:37 > 0:11:40I am doing something about this so people don't...
0:11:40 > 0:11:50Are no longer treated this way any more.
0:11:52 > 0:11:53So would Southern passengers like an alternative?
0:11:53 > 0:11:56Well, it makes more sense to have a choice on the
0:11:56 > 0:11:57railway.
0:11:57 > 0:12:00Just because you would have the competition which leads to a
0:12:00 > 0:12:01better service.
0:12:01 > 0:12:03It would be brilliant to have a choice between
0:12:03 > 0:12:04who we could go with.
0:12:04 > 0:12:06I think Southern Rail are rubbish.
0:12:06 > 0:12:08This is all well and good, but of course, it
0:12:08 > 0:12:10is simply not possible to set up your own railway.
0:12:10 > 0:12:11Hello.
0:12:11 > 0:12:15I'm meeting up with Steve at King's Cross
0:12:15 > 0:12:25station in London to find out why on Earth he thinks it can be done.
0:12:26 > 0:12:36Steve, operating your own train company, it sounds crazy.
0:12:36 > 0:12:39It sounds crazy but giving a customer a choice
0:12:39 > 0:12:44of who they want to travel with, you've got a smaller company out
0:12:44 > 0:12:47there, it can be managed better, you can look
0:12:47 > 0:12:48after your customers a lot
0:12:48 > 0:12:50better, and you can do great things for them.
0:12:50 > 0:12:53Tell me what your company is going to be called and why you have
0:12:53 > 0:12:54given it that name?
0:12:54 > 0:12:57Basically, we're going back to the days of London,
0:12:57 > 0:12:58Brighton and South Coast Railway.
0:12:58 > 0:13:01We are going back to the golden era where you cared about your
0:13:01 > 0:13:03customers.
0:13:03 > 0:13:07So why are we on a train heading to Yorkshire?
0:13:07 > 0:13:10Well, we're on our way to meet someone who had the
0:13:10 > 0:13:18same crazy idea up north.
0:13:18 > 0:13:21Several years ago, Ian wanted to
0:13:21 > 0:13:23set up a railway service in competition with Virgin from
0:13:23 > 0:13:25Yorkshire in the North East to London.
0:13:25 > 0:13:26Hello, Ian.
0:13:26 > 0:13:27Hello, there.
0:13:27 > 0:13:28I'm Natalie.
0:13:28 > 0:13:29Nice to meet you.
0:13:29 > 0:13:30How are you?
0:13:30 > 0:13:31And this is Steve.
0:13:31 > 0:13:33Hello, Steve.
0:13:33 > 0:13:33Nice to meet you.
0:13:33 > 0:13:36You will find a lot of people will tell you
0:13:36 > 0:13:37it can't be done.
0:13:37 > 0:13:39And there are times when you start to think, "Have
0:13:39 > 0:13:40they got a point?"
0:13:40 > 0:13:42Particularly if it looks like you're not moving
0:13:42 > 0:13:43forward.
0:13:43 > 0:13:44But here's the thing.
0:13:44 > 0:13:45The Government gives out franchises to
0:13:45 > 0:13:51train companies to operate services in various parts of the country.
0:13:51 > 0:13:53But there is something called open access operation.
0:13:53 > 0:13:58It is technically possible for a company to apply for
0:13:58 > 0:14:02open access to run a service in competition with the existing
0:14:02 > 0:14:05franchise holder, as long as they add something
0:14:05 > 0:14:06extra like stopping at
0:14:06 > 0:14:09stations the existing service doesn't stop at.
0:14:09 > 0:14:14This is exactly what Ian did and the result was
0:14:15 > 0:14:22Grand Central Trains.
0:14:22 > 0:14:25If you look at traditional type open access, which is
0:14:25 > 0:14:27where Grand Central came from, we have opened up areas
0:14:27 > 0:14:29of the country that long ago lost all their direct
0:14:29 > 0:14:30services to London.
0:14:30 > 0:14:34There it goes.
0:14:34 > 0:14:37Do you feel proud when you see that go past?
0:14:37 > 0:14:38I do.
0:14:38 > 0:14:40Actually, still, it gives me a bit of a tingle, still.
0:14:40 > 0:14:43Not quite as much as the first days, but...
0:14:43 > 0:14:45The very first train went through with less
0:14:45 > 0:14:46than 30 people on it.
0:14:46 > 0:14:47Grand Central now runs nine daily services
0:14:47 > 0:14:50from the North East of West Yorkshire to central London.
0:14:50 > 0:14:52Other open access operators include Eurostar
0:14:52 > 0:14:59and the Heathrow Express.
0:14:59 > 0:15:04So Steve wants to do the same in competition
0:15:04 > 0:15:07with Southern Rail and it is technically possible, but Ian has
0:15:07 > 0:15:09worked as an entrepreneur in the railway industry for decades.
0:15:09 > 0:15:11Steve, on the other hand, is just a guy
0:15:11 > 0:15:12with a vision.
0:15:12 > 0:15:15As I'm sure Steve is finding, everybody is telling you it
0:15:15 > 0:15:16won't work.
0:15:16 > 0:15:21"You won't make any money."
0:15:21 > 0:15:26And we found it will.
0:15:26 > 0:15:30It takes a bit of time.
0:15:30 > 0:15:32If you get your plans right, it will.
0:15:32 > 0:15:34Ian says the rules for open access operation
0:15:34 > 0:15:37have eased slightly, so
0:15:37 > 0:15:40he's actually now looking for opportunities down at the other
0:15:40 > 0:15:42end of the country, namely Southampton to London, to compete
0:15:42 > 0:15:43with South Western trains.
0:15:43 > 0:15:46One of the other things that has recently
0:15:46 > 0:15:48happened, a decision last by the regulator on the east coast,
0:15:48 > 0:15:49allowed head-to-head competition for the
0:15:50 > 0:15:51very first time, based upon pricing.
0:15:51 > 0:15:54Now, nobody in the South really has any price
0:15:54 > 0:15:56competition, certainly south of
0:15:56 > 0:16:02the river, which is why your proposal has come along as well as
0:16:02 > 0:16:05the new journeys you offer and why we have also got
0:16:05 > 0:16:06an application currently live
0:16:06 > 0:16:09south of the river.
0:16:09 > 0:16:10Proposed mainly to relieve passenger congestion
0:16:10 > 0:16:12because of significant overcrowding even on that route.
0:16:12 > 0:16:14But also to bring some price competition, which
0:16:14 > 0:16:19is long, long overdue.
0:16:19 > 0:16:21We asked the Department for Transport about open
0:16:21 > 0:16:23access operations and this is what they told us.
0:16:23 > 0:16:26"We have a highly competitive rail franchising system.
0:16:26 > 0:16:31"For competition to work effectively, both
0:16:31 > 0:16:33"the existing franchises and
0:16:33 > 0:16:36"open access operators need a level playing field."
0:16:36 > 0:16:38We also asked Southern Rail what they felt about
0:16:38 > 0:16:41Steve's plans to set himself up in competition with them.
0:16:41 > 0:16:47But they declined to comment.
0:16:47 > 0:16:49So one frustrated Southern Rail passenger
0:16:49 > 0:16:52has a dream to set up an alternative.
0:16:52 > 0:16:54Some would say he is inexperienced and has no financial
0:16:54 > 0:16:58backing.
0:16:58 > 0:17:01But Ian, the expert of open access operation, has got some words
0:17:01 > 0:17:02of encouragement.
0:17:02 > 0:17:03It is a difficult one.
0:17:03 > 0:17:05You've got to believe it yourself first of all.
0:17:05 > 0:17:09You will have to do, as I am sure you are doing, a
0:17:09 > 0:17:10detailed business plan and proposition.
0:17:10 > 0:17:16Bearing in mind that most open access operators have been
0:17:16 > 0:17:18successful and are successful then there is no reason why you couldn't
0:17:18 > 0:17:21find somebody who would be prepared to invest in your proposal.
0:17:21 > 0:17:23It sounds like you've got a mountain to
0:17:23 > 0:17:24climb, Steve.
0:17:24 > 0:17:25Have you started?
0:17:25 > 0:17:26Started to climb that mountain, yes.
0:17:26 > 0:17:30One day going to reach the top.
0:17:30 > 0:17:32I can't wait to see the view on the other
0:17:32 > 0:17:33side of that mountain, believe
0:17:33 > 0:17:34me.
0:17:34 > 0:17:44It is going to be absolutely beautiful.
0:17:45 > 0:17:49Now, 10,000 people have type one diabetes in the south-east.
0:17:49 > 0:17:52It is a disease that can strike young and can last a lifetime.
0:17:52 > 0:17:54But solutions are being found.
0:17:54 > 0:18:02Rachel Royce reports.
0:18:02 > 0:18:05As a child, Penny from Brighton hated
0:18:05 > 0:18:10needles, but she had to have at least five injections a day.
0:18:10 > 0:18:15There was a time in my life when I had to
0:18:15 > 0:18:17have quite a build-up before I injected myself
0:18:17 > 0:18:19because I would just scream and cry constantly when I
0:18:19 > 0:18:22knew that it was time to do my injections.
0:18:22 > 0:18:23And I just really, really hated it.
0:18:23 > 0:18:26She was diagnosed with type one diabetes when she was
0:18:26 > 0:18:27six.
0:18:27 > 0:18:30She was rushed to hospital for emergency treatment after alarming
0:18:30 > 0:18:32symptoms appeared on a family holiday.
0:18:32 > 0:18:35This is when we went to Center Parcs.
0:18:35 > 0:18:39But that little girl there with those big eyes I now
0:18:39 > 0:18:41recognise as a very sick little girl.
0:18:41 > 0:18:42I look kind of scary.
0:18:42 > 0:18:43You do.
0:18:43 > 0:18:49You've got enormous eyes and you look just ill.
0:18:49 > 0:18:52It was really horrible and we just used to have
0:18:52 > 0:18:54to grin and bear it.
0:18:54 > 0:19:01I would often cry when she was crying.
0:19:01 > 0:19:04But it had to be done - she would die without
0:19:04 > 0:19:05insulin.
0:19:05 > 0:19:06So it wasn't a question.
0:19:06 > 0:19:08One thing that can happen with diabetes is something called
0:19:08 > 0:19:09hypoglycaemic episodes.
0:19:09 > 0:19:12That is when your blood sugar falls so low it is
0:19:12 > 0:19:22possible to suffer from blackouts.
0:19:24 > 0:19:27Leslie from Bexhill has suffered from type one diabetes since
0:19:27 > 0:19:32she was a child and knows all about so-called hypos.
0:19:32 > 0:19:35It was really quite frightening because I would find
0:19:35 > 0:19:41myself just waking up on the kitchen floor and being completely
0:19:41 > 0:19:44disorientated as to which time of day it was, which day it was, where
0:19:44 > 0:19:47I was.
0:19:47 > 0:19:50And there was always the risk that one day I wasn't going to wake
0:19:50 > 0:19:53up, I would actually die.
0:19:53 > 0:20:00The human body is an incredible biological
0:20:00 > 0:20:03machine and it is powered by our ability to convert food into energy,
0:20:03 > 0:20:09enabling us to move our bodies.
0:20:09 > 0:20:13Whether that is just breathing and thinking or taking part
0:20:13 > 0:20:16in extreme exercise.
0:20:16 > 0:20:21But we need the hormone insulin to do it.
0:20:21 > 0:20:23There are two types of diabetes.
0:20:23 > 0:20:24Type one occurs when the body stops producing
0:20:25 > 0:20:25insulin.
0:20:25 > 0:20:28Type two when the body stops reacting properly to insulin.
0:20:28 > 0:20:30Scientists around the world are trying to find solutions to
0:20:30 > 0:20:32diabetes.
0:20:32 > 0:20:34Type one presents particular challenges.
0:20:34 > 0:20:40We will be looking at pioneering research into
0:20:40 > 0:20:44the disease being carried out here in the South East.
0:20:44 > 0:20:45Professor Adrian Bowen, who is based at
0:20:45 > 0:20:48Brighton University, has dedicated his working life, more than 40
0:20:48 > 0:20:51years, to try to help find answers to the problem of diabetes.
0:20:51 > 0:20:52Hi, Professor.
0:20:52 > 0:20:53Thank you for joining us.
0:20:53 > 0:20:54You are very welcome.
0:20:54 > 0:20:56Is there anyway we can prevent people from
0:20:56 > 0:20:58getting diabetes?
0:20:58 > 0:21:01In the case of type two diabetes, absolutely, yes.
0:21:01 > 0:21:02With lifestyle change.
0:21:02 > 0:21:08Type one?
0:21:08 > 0:21:11That's a little more complicated in that it is a genetically based
0:21:11 > 0:21:12condition.
0:21:12 > 0:21:14But we now understand quite a bit about the disease
0:21:14 > 0:21:15process.
0:21:15 > 0:21:25And by understanding the disease process, we have an
0:21:27 > 0:21:28opportunity to identify parts of the process
0:21:28 > 0:21:30where we can target therapies.
0:21:30 > 0:21:32At Brighton University, the small team in the diabetic research
0:21:32 > 0:21:35unit, led by Adrian Bone, are adding to international efforts to find a
0:21:35 > 0:21:37cure.
0:21:37 > 0:21:40They helped identify that it is a virus that triggers type
0:21:40 > 0:21:41one.
0:21:41 > 0:21:43It is only with some developments in technique and
0:21:43 > 0:21:46technology that allowed us to actually discover some viral
0:21:46 > 0:21:53particles present in some of the insulin producing cells.
0:21:53 > 0:21:55But does open the way for a vaccine?
0:21:55 > 0:22:00Potentially, yes, it does.
0:22:00 > 0:22:10Or you understand the downstream things that are going on
0:22:12 > 0:22:15Or you understand the downstream things that are going on
0:22:15 > 0:22:17after the viral infection has taken place and that is where
0:22:17 > 0:22:18activities at the moment.
0:22:18 > 0:22:21Could that be a possible cure for type one diabetes?
0:22:21 > 0:22:24I would love to think so, yes, I am enough
0:22:24 > 0:22:28of an optimist to think that that is where the cure will come, yes.
0:22:28 > 0:22:29But as well as cutting-edge microbiology
0:22:29 > 0:22:32research, the team also works in the community to educate people
0:22:32 > 0:22:34on how to manage diabetes or avoid it altogether.
0:22:34 > 0:22:36Doctor Wendy McFarlane has recently been trialling
0:22:36 > 0:22:38equipment to help people understand the effect of food on their
0:22:38 > 0:22:39metabolism.
0:22:39 > 0:22:41One of these is the continuous glucose monitoring
0:22:41 > 0:22:42system.
0:22:42 > 0:22:45Which is a nice little system that tells you what your
0:22:45 > 0:22:46glucose concentrations are all the time.
0:22:46 > 0:22:53So if you know what a big bottle of fizzy pop is doing to your
0:22:53 > 0:22:56blood glucose levels and you see that big spike in sugar, you know
0:22:56 > 0:22:58what it is doing to your metabolism.
0:22:58 > 0:23:02You know how you feel at that point and you can match it up with what it
0:23:02 > 0:23:03is doing.
0:23:03 > 0:23:05Continuous glucose monitors are still on trial and not
0:23:05 > 0:23:08widely available.
0:23:08 > 0:23:11Penny still tests blood sugar levels by her finger.
0:23:11 > 0:23:14But a big improvement in her life has been the introduction of a pump
0:23:14 > 0:23:21to deliver the insulin she needs instead of daily injections.
0:23:21 > 0:23:23I just inject a cannula in once every two days and
0:23:23 > 0:23:26then I can continuously decide how much insulin to give and it is
0:23:26 > 0:23:29absolutely just given me so much more independence and so much more
0:23:29 > 0:23:30control.
0:23:30 > 0:23:32Can you show me the pump?
0:23:32 > 0:23:35Yeah.
0:23:35 > 0:23:37So I've got this here, this tiny little insulin pump.
0:23:37 > 0:23:41And it is just connected with a tube of insulin,
0:23:41 > 0:23:45and it goes into a cannula and I can do just press a few buttons and it
0:23:45 > 0:23:47will deliver however much I want.
0:23:47 > 0:23:48An artificial pancreas.
0:23:48 > 0:23:51That is an electronic device that can both read
0:23:51 > 0:23:57blood sugars and deliver insulin is being trialled in the UK
0:23:57 > 0:24:00but is still a few years off, and so far
0:24:00 > 0:24:04there is still no cure or vaccine for type one diabetes.
0:24:04 > 0:24:06But Lesley feels she has had the closest
0:24:06 > 0:24:07thing to a cure.
0:24:07 > 0:24:10She has had an unusual type of transplant and now
0:24:10 > 0:24:12it means she is able to swim.
0:24:12 > 0:24:17Before the operation, she would have unpredictable blackouts.
0:24:17 > 0:24:23It meant that I went straight from walking
0:24:23 > 0:24:25round to blacking out, and of course if I didn't
0:24:25 > 0:24:27recognise the symptoms
0:24:27 > 0:24:30when I was in the pool and I blacked out, potentially I could have
0:24:30 > 0:24:31drowned.
0:24:31 > 0:24:37After the transplant, I was able to have some adult swimming
0:24:37 > 0:24:41lessons and now I can quite happily splash up and down the
0:24:41 > 0:24:44pool, which is great.
0:24:44 > 0:24:47The transplant Lesley had was a relatively new
0:24:47 > 0:24:52procedure called an islet transplant, where cells from a
0:24:52 > 0:24:54donated pancreas pancreas are transferred into the diabetic
0:24:54 > 0:24:56patient.
0:24:56 > 0:25:00It costs around ?40,000 per patient, but the benefits for most
0:25:00 > 0:25:04people have been worth it.
0:25:04 > 0:25:05Professor Bone is a big fan.
0:25:05 > 0:25:07Of those 180 patients who have had an islet
0:25:07 > 0:25:10transplant, 98% of those, that is virtually all of them,
0:25:10 > 0:25:12have not had a single hypoglycaemic episode since
0:25:12 > 0:25:13they were transplanted.
0:25:13 > 0:25:14It really has been life transforming.
0:25:14 > 0:25:16I am so grateful to the people who allowed
0:25:16 > 0:25:19their relatives' organs to be used to enable me to have the transplant
0:25:19 > 0:25:22because it really has made such a total difference to my life.
0:25:22 > 0:25:25I can now live and do whatever I want to
0:25:25 > 0:25:27do whenever I want to do it without having any worries.
0:25:27 > 0:25:30But as is often the case with transplants, there is
0:25:30 > 0:25:31a shortage of donors.
0:25:31 > 0:25:33That may be resolved in the future with stem
0:25:33 > 0:25:38cell research.
0:25:38 > 0:25:40But at the moment, the team at Brighton is
0:25:40 > 0:25:42concentrating on another way forward.
0:25:42 > 0:25:47Their latest research involves using space age technology.
0:25:47 > 0:25:50Right, Rachel, here we have got our throughput by a reactor system.
0:25:50 > 0:25:53It is based loosely around technology
0:25:53 > 0:25:56that was developed by Nasa to try and mimic
0:25:56 > 0:25:58the lack of gravity on the
0:25:58 > 0:26:01International Space Station.
0:26:01 > 0:26:04So what we have got here is a system that
0:26:04 > 0:26:07will actually allow us to grow and maintain cells
0:26:07 > 0:26:11in negative gravity, so in other words they are
0:26:11 > 0:26:14free-floating and in that way they are kept much more healthy and
0:26:14 > 0:26:18metabolically they are able to perform better.
0:26:18 > 0:26:22And so with this system, there could be more islet
0:26:22 > 0:26:24available and ever more transplants.
0:26:24 > 0:26:25That is precisely the idea.
0:26:25 > 0:26:27The success of a graft is directly related
0:26:27 > 0:26:28to the quality and number of
0:26:28 > 0:26:31the islets that are transplanted.
0:26:31 > 0:26:35And your work could help make it available for a lot more people?
0:26:35 > 0:26:39We hope so because the very exciting thing that we have just done very,
0:26:39 > 0:26:42very recently is that we have managed to make this in a
0:26:42 > 0:26:45transportable form.
0:26:45 > 0:26:47This equipment can now be put into a car or an
0:26:47 > 0:26:49ambulance or everything else and the islets,
0:26:49 > 0:26:54after they have left the
0:26:54 > 0:26:56processing laboratory, can be placed in a portable one
0:26:56 > 0:26:58of these and can be taken to the
0:26:58 > 0:27:00transplant centres, where the islets will arrive in absolutely tiptop
0:27:00 > 0:27:01shape.
0:27:01 > 0:27:05So far, Penny isn't eligible for an islet transplant.
0:27:05 > 0:27:07Islet transplants sound incredible and
0:27:07 > 0:27:10they sound like they would change my life
0:27:10 > 0:27:15completely, but I know that at
0:27:15 > 0:27:19this point, I'm not in need of one, because my diabetes is not having a
0:27:19 > 0:27:20terrible impact on my life.
0:27:20 > 0:27:23I can survive with that.
0:27:23 > 0:27:25Penny feels that there are other people that would
0:27:25 > 0:27:29need it more and we know it is a very, very expensive operation at
0:27:29 > 0:27:31the moment, but I have my fingers crossed
0:27:31 > 0:27:34that the price of that, the
0:27:34 > 0:27:38availability of that, will change so that all type one
0:27:38 > 0:27:39diabetics including my daughter can have an
0:27:39 > 0:27:41islet transplant.
0:27:41 > 0:27:44Whilst the ultimate cure for type one diabetes is still
0:27:44 > 0:27:46some way off, breakthroughs are being made all the time.
0:27:46 > 0:27:48And some breathtaking developments are being
0:27:48 > 0:27:58enjoyed by people with the disease in the south-east.
0:28:00 > 0:28:03Now, for more information about the programme, go
0:28:03 > 0:28:10to our live pages on the BBC News website.
0:28:10 > 0:28:18You can watch the show again on iPlayer if go to the website.
0:28:18 > 0:28:21Coming up next week - how clean is the air
0:28:21 > 0:28:29that we breathe in the Southeast?
0:28:29 > 0:28:33It is not very nice living around here because of the pollution
0:28:33 > 0:28:37so I have just got to sit here and suffer.
0:28:37 > 0:28:39Why a front room is becoming the new venue for bands.
0:28:39 > 0:28:41I started posting house gigs about two
0:28:41 > 0:28:44and a quarter years ago because I really missed having
0:28:44 > 0:28:46a social life and I really missed live music.
0:28:46 > 0:28:48And we meet our eight legged friends in
0:28:48 > 0:28:49the English Channel.
0:28:49 > 0:28:51It takes a couple of months to build up this
0:28:51 > 0:28:54sort of trust between the keeper and an octopus but she loves it.
0:28:54 > 0:28:56That is it from us for tonight from Broadstairs.
0:28:56 > 0:28:57Thank you for watching.
0:28:57 > 0:29:01See you next week.
0:29:06 > 0:29:09Hello, I'm Riz Lateef with your 90-second update.
0:29:09 > 0:29:11It's been described as the worst blunder in Oscars history -
0:29:11 > 0:29:14when the wrong winner for best film was announced.
0:29:14 > 0:29:16The stars of LaLa Land were accepting the award
0:29:16 > 0:29:20when they were told the winner was actually Moonlight.
0:29:20 > 0:29:23There's a warning that insuring your car could cost a lot
0:29:23 > 0:29:24more because of new rules.
0:29:24 > 0:29:26The changes mean higher compensation pay-outs.