12/12/2011 Inside Out West

Tonight we're reporting on concerns about a vaccine given to nearly one

million children. This boy suffers from a condition

called narcolepsy which causes and to suddenly fall asleep without

warning. His family say it all happened after he was vaccinated

against swine flu. My child when from a healthy and energetic young

boy to someone who just wanted to sleep. No one will ever convince me

that it wasn't as a consequence. Tonight, we are seeking answers and

bowls beat to the manufacturers of the vaccine. There is currently no

evidence to suggest a causal link. Also in the programme tonight -

after the M5 Crash, is it time to install automatic fog warning

lights on our motorways? Ahead of us, we noticed a wall of white and

I said, that's the thickest fog I've ever seen. There should be

some way of giving warnings ahead of time.

This is Inside Out West. First tonight, we're meeting a

family from here in Frome with some serious concerns about a vaccine

that was given to nearly one million children. Pandemrix was

designed to protect children against swine flu. But now, there's

mounting evidence it could be linked with a sleep disorder called

narcolepsy. Here's our health correspondent, Matthew Hill.

Most parents worry about their child's sleep, but for Caroline

Hadfield it dominates her life. Her six-year-old son Josh has a very

rare condition that means he can't regulate his sleep patterns. It

came on suddenly in the early part of last year, just after he was

vaccinated against Swine Flu. He had the vaccination in January 2010

then three weeks later suddenly went from a very healthy energetic

boy to someone who just wanted to sleep. He was sleeping on average

about 18 hours per day. We didn't know what was wrong. It took nearly

a year of trips to hospitals and specialists for Caroline to find

out what was wrong with Josh. Initially, I put it down to being

the end of them coming up to half term week he was tired and then he

started losing muscle control so he couldn't hold things properly he

needed you to support his hand because it was just dropping

forward or anything like that it was horrible.

Whenever Josh gets excited, he loses control of his muscles and he

collapses, even watching something funny on the TV brings on an attack

and for 11 months Caroline and her husband searched for an answer, He

dad a cat scan, an MRI, lumbar puncture, more blood tests than I

can shake a hat at just to try to Finally in January this year, Josh

was diagnosed with narcolepsy and a condition associated with it called

cataplexy. With the help of medication, his parents and a broad

minded school, Josh copes with his illness. While his friends play, he

takes naps in the classroom and he's on a quadruple dose of Ritalin.

It's heartbreaking, I've lost my son. It's heartbreaking to see

what's happened and to know this is his life now. He copes with it

fantastically, he really does, but he shouldn't have to. He's six. He

takes six different tablets every single day and he has to just to

get through the day. That's wrong. As the Hadfields struggle to come

to terms with what's happened to their son, they have often asked if

there is a link between the swine Flu vaccine and Josh's illnesses.

Along with around one million other children in Britain he was given

Pandemrix. And there's now evidence that that vaccine may have

something to do with his illness. The evidence has come from Finland,

one of the first countries to report concerns about Pandemrix.

I've come to the capital city Helsinki to find out more.

Public health doctors here have far better ways of keeping tabs on

who's been vaccinated and any possible side effects. Sleep

experts started noticing cases of narcolepsy and cataplexy in the

spring of 2010. I'm meeting Dr Markku Partinen who runs a

specialist sleep clinic in Helsinki. It was Dr Partinen who first

noticed an unusually large number of children developing narcolepsy

and cataplexy. Dr Partinen is an expert in sleep disorders, but he'd

never seen so many cases of childhood narcolepsy as he did last

year. Before 2010, we have had one child under 9 diagnosed in 2003 and

now already in June I had five. So, one in eight years compared to five

in six months. And in the following months, around 70 more cases of

childhood narcolepsy came to light and Dr Partinen's researchers

suspected a link with the Pandemrix vaccine. The risk of having

narcolepsy was 12 times higher after having Pandemrix as compared

to not having it. As the Finnish cases came to light last year, they

generated media attention and strong public feeling. After we had

information in June and July about the number of cases of narcolepsy

in children after Pandemrix, no way I would have given it to any of my

own children or the children of my friends or relatives. Because

evidence was at that time so strong. For adults there is no problem, so

I say to my adult friends, why don't you have it, because there is

no risk, but don't give it to children. And that is exactly what

the Finnish authorities thought when they saw Dr Partinen's

research. The first person to see it was vaccine specialist Hannah

Nohynek. We had to go out and find out if this was strictly true, then

we need to stop vaccination. We need to find out and we need to

alert the others. So that's what we actually did. We halted the

vaccination campaign as a precautionary measure so we could

find out what was truly happening and how much that was in

association with the vaccine. the middle of 2010, Finland

withdrew Pandemrix from its vaccination campaign and

immediately made Dr Partinen's research public. Given the number

of cases that we had by then it was over 80 and given the amount of

media attention that they were getting and given the concern

parents had, we had to be transparent and open about our

results. We couldn't have kept them to ourselves only. That was an

impossibility and our responsibility was to come out with

results whether or not the manufacturer liked them. Hannah's

team published Dr Partinen's findings and sent them to the

European regulator which started an investigation. At home, the Finnish

health ministry concluded that the vaccine was linked with the spread

of narcolepsy in children and Health minister Paula Risikko took

the problem very seriously. believe there is a link between

Pandemrix vaccine and narcolepsy. We have a national working group

with a number of experts who are certain there is a link.

Finnish government has made sure there are support groups and

specialist drugs available to help the families cope with a lifelong

illness. We have decided to take these measures because the decision

to acquire the vaccines was ours. Under the threat of a pandemic, and

therefore we want to take responsibility for the outcome.

the Finnish government is promising money too. Pledging to make sure

the families are looked after for life. The final figure for

compensation for children affected by narcolepsy here in Finland is

yet to be agreed but what has been is the principle that there will be

compensation as well as the right medical treatment and follow-up.

Back In the UK though, nothing changed. In fact, even while the EU

regulator investigated Pandemrix, it was being re-issued to GPs last

autumn because of a shortage of the seasonal flu vaccine. Caroline

Hadfield is travelling to Liverpool to meet another family coping with

childhood narcolepsy. Pauline Carlton had her whole family

vaccinated against swine flu in January of this year. Long after

the vaccine had been withdrawn in Finland. Soon after the vaccination,

her youngest son Lucas developed the same symptoms as Josh. He was a

humorous little boy. He used to make me laugh so much. He had a

wicked sense of humour, he was the funny one out of all my kids, the

most humorous. He'd do things just to make me laugh and it's all gone.

All that's gone and all that's left is this little angry, frustrated

little boy and that's heartbreaking. Absolutely heartbreaking. Just like

Josh, Lucas will collapse if he starts laughing or gets excited.

He's been off school for the best part of a year, sometimes sleeping

18 or 20 hours per day. His weight has doubled and until recently he

was having regular violent tantrums. Pauline had no idea the vaccine was

under investigation by the European medicines watchdog when she took

her family to get vaccinated. was no warning about nothing. I

didn't get told about any side effects or anything but I felt

relieved that my kids weren't going But just like Caroline's son, Josh,

within three weeks of the jab, Lucas was a different child. I have

to medicate my son to keep him awake, I have to medicate him every

day. And I have to medicate him every night to put him to sleep. It

is just not right, is it, really? I thought I was protecting my child

and what I have done, protecting my child, has left him with a

disability for the rest of my life. The EU regulator spent almost a

year a investigating Pandemrix and invest -- and eventually decided

they could be a link between the vaccine and trialled could

narcolepsy. It now recommends that Pandemrix is not given to people

under 20 unless there is no alternative. According to UK health

records, only seven children have developed narcolepsy after taking

Pandemrix in the UK. Many fewer than in Finland. The Government

does not accept there is a link here, and for Pauline and Caroline,

this compound their problems. will not even acknowledge it and I

think, hopefully, people will start looking into it and accepting

responsibility somewhere along the line. That is what we ask for as a

parent. Angry and frustrated, Pauline and Caroline do not trust

the Government's figures and think there may be more British children

waiting for a diagnosis. The thing that we are aiming for now is to

get it publicised to see if there are any more children that are some

-- suffering and doctors that know anything about it. It is not

publicity for us, it is publicity for what has happened and so that

families which have not been diagnosed and are going through

this know that they are not on their own. We would have liked to

put our questions to the minister responsible for vaccinations, and

Milton, but unlike her Finnish counterpart, she not only refused

to give an interview but also to comment. The MHRA raided, and, it

Pandemrix is made by GlaxoSmithKline, one of the world's

largest drugs companies, almost 100,000 employees. I have come to

the company's west London offices have to meet a senior manager. I

want to know if she will acknowledge the apparent links

between Pandemrix and narcolepsy in Lucas, Josh and other young

children. There is currently no evidence at all to indicate that

there is a causal links between Pandemrix and narcolepsy. We are

working very hard with the regulator authorities to understand

what is happening. We are conducting a number of studies in

the laboratory and with independent Sleep investigators in Quebec to

understand what is happening. you saying you disagree with the

Finnish Institute when they say there is a link with Pandemrix.

the moment the regulator around the world believe that there is not a

link between narcolepsy and Pandemrix. But at the end of the

day patient safety is of utmost importance to us and we would never

put out a drug or leave it out there if we believed that it was a

true issue. They say regulators do not see a link but the main

European regulator does. It said in July, or after up almost a year of

research, that in Finland and It did also say that overall the

benefits outweigh the risks but further studies are needed. This

leaves Pauling, Caroline and their families angry and determined to

find arts -- answers. With GlaxoSmithKline and the politicians

of all the rest of it, it is not their children going through it so

they do not care. It is not their children. These are children going

through it, we care. If they think that happiness on the head and

saying, there, there, it helped load of other people, go away. We

will not be going away, we will be making a noise about this until

something is done. At the end of Right now, the families are only

focused on getting their children as well as they can be. However,

lawyers in Finland believe they might have a good case for

financial compensation in the future. I think it is irresponsible

and it will definitely expose the British government to legal actions.

I think they should have told to parents what had been happening

elsewhere. Legal action is certainly a way off, but Caroline

remains convinced that her son has had his whole life changed by

Pandemrix. My son when from a healthy, energetic little boy to

someone who wanted to sleep, that is not normal. No one will ever

convince me that it was not to do with that vaccine.

If there is something you would like us to investigate, then why

Sam Smith has been investigating why a fog detection system has not

been installed on the M5. Last month's horrific pile-up on

the M5 was Britain's worst for 20 years. Unusually, the police were

quick to suggest the cause. There was very significant smoke on the

carriageway which was very distracting and difficult to drive

through. The role of smoke, possibly from a nearby fireworks

display, is currently under investigation. Travelling on the M5

and getting up to speed and ahead of us we noticed a white wall. I

turned to Dad in the cab and said, that is the thickest fog I have

ever seen. I have never seen anything like that before, I have

driven for many years, and driven through fog before. But I have

never seen anything as sudden as this. There was no fog previously,

just suddenly hitting a wall of extremely impenetrable fog. Inside

Out has learned that despite their apparent focus on smoke, the police

are also investigating the possible role of fog. Tonight, we can reveal

that the part of the M5 where so many died is known by the

authorities to be a highly fog prone stretch of the motorway. So

bad, in fact, that only last two consultants recommended up grading

the fog warning system there. A recommendation on which there are

apparently no plans to act. The current warning system is outdated,

its electronic boards can signal fog but only if staff at the

Highways Agency activate them and they rely on people on the ground,

like the police, reporting a problem. On that night, no one did,

so fog was not signed. Fog has always been a danger on

Britain's roads and early efforts to protect motorists ranged from

the basic to the bizarre. Motorway police have been armed with a ray

guns. They are harmless... Because they relied on human intervention,

the systems could be hit and miss. A motorway copper shows how good he

is on the move would be new space- age lamplight of. It took nine

deaths in the 80s for things to change. The coroner's court heard

how police had no warning of a sudden blanket of fog which

descended on the motorway. The M25 pile-up was at the time Britain's

worst. Questions were asked about the fog warning system. It was the

job of the police to switch the lights on, but they had not. It

must be remembered that a policeman has to physically come down here

himself and by the use an electronic device such as this one,

orate he, to turn those lights on. In spite of the fact that there is

a fully operational motorway control centre a few miles away

from here, this, Britain's most modern motorway, is still manually

operated. Signs which were automatically triggered by a

roadside visibility sensors were introduced. It worked, motorists

heeded the signs and slowed down. In 1991, tragedy struck again.

These -- the smoke from the crash lingered over the scene for hours.

50 yards of twisted and burnt metal strewn across the London-bound

carriageway. What did Bob, a survivor of the crash, think when

you heard about last month's pile up? Not again. Are people ever

going to learn to match you had the M5, the M42 a few years ago as well,

it seems to be forgotten very quickly, it just happens again and

there is an outcry and then a few years down the line it happens

again. Then it all rolls back. There was this one, there was that

one, but it still seems to keep happening. There has got to be some

way of giving Prix warnings for fog like it, I do not know the answer

personally, but there are obviously brainy people around who should

have answers. And indeed there are, I travelled to meet Hans Remain who

helped to install an automatic fog detection system in Holland.

1990 there was a very severe accident during very dense fog.

There were many deaths, many casualties except for. This caused

the Ministry of Transport to ask us to implement a fog warning project

to detect dense fog and won the drivers' with speed limits.

sensors are similar to those on the M25. They detect and warned not

only of fog but anything that affects his ability. And according

to Hans Remain, they rarely get it wrong. This is completely automatic,

there is no human being involved? No, it is better not to, it is

better not to lay the responsibility with human beings in

these cases. It is so unexpected, you cannot give this task to a

human being. So, a totally automated system, built from the

ground up in just six months, designed to make a Dutch motorway

safer. But does it work? I went to meet the man who spent two years

evaluating it. The system did help people in reducing their speed

further than they do just too bad visibility situations. You get

fewer accidents? After the system was installed, fog accidents ceased

to to happen. How important is it that drivers believe the signs they

are seeing? Trust is important. As soon as you have fog the system

once the people and that means that if you have such a warning them

quite soon you will be confronted with fog. It means there is very

close correspondence between the warning and the fog itself, trust

will automatically develop. Back then, the cost of the technology

was high, nearly a quarter of a million pounds per mile. That did

not put the Government off. The political will to install this

expensive but apparently effective technology came about because

everybody knew that a maze it -- major cause of the accident was fog.

But back in the UK with the M5 pile up, things are not quite so clear

cut. Here it is not just for but smoke

that is under investigation. Experts say that pollutants are

like smoke can make fog worst. consists of droplets of water

suspended in the air which scatter the light and reduces visibility.

When the droplets form in the atmosphere, they have to form on a

particle of pollution. There is always some pollution in the

atmosphere. If there is a lot of pollution, in general there will be

more droplets formed and more scattering, so the fog will appear

denser. Crucially, whether the M5 crash happened it in a fog or smoke,

or a sensor at the crash site would have detected reduced visibility.

But there are no senses at the site or in the south-west. They have

been installed in the north-west, as part of an automated system. The

cost? �180,000. We obtained a consultant's report from last year

which identified the accident spot as at high risk from fog. It

recommended installing an automated fog warning system. We asked the

agency whether it had any plans to do so. It said it did not and it

would only look at safety improvements once the results of

the police investigation were known. But some of those involved in that

terrible accident would like accent that smack action now. -- would

like action now. The earliest indication you can give people to

slowdown will be beneficial. Even 10 miles an hour or 15 miles an

hour would have made those fatal crashes near fatal and given people

half a chance. I think it would be a phenomenal idea. And why not? If

that is something that can be provided or a lesson to be learned

then a great idea. That is it for this edition of

Inside Out West. You can keep in touch with what we are up to one

Facebook and Twitter. Next week we will have a special edition of the

programme looking back at the April riots in the Bristol area of Stokes

Croft. A Tesco Express store found itself at the centre of the trouble.