12/12/2011 Inside Out North West

This week for our final programme of the year, I am in Manchester,

famous for its Christmas markets, and a venue for the homecoming of

one of the country's most famous tenors, Alfie Boe, who would talk

to us later. Tonight, the Liverpool boy who

suffers from a condition called narcolepsy. His family say it

happened after he was vaccinated against swine flu. He was the funny

one out of all of my children. He did the silliest things to make me

laugh. It is all gone. We are seeking answers, and we will

talk to the manufacturers of the vaccine. There is currently no

evidence to indicate there is Ailey -- a link between Pandemrix and

narcolepsy. And opera start Alfie Boe opens his

At this time every year, colds and flu are most likely to spread. A

family from Liverpool are among those with serious concerns for a

vaccine for swine flu. Pandemrix was given to nearly one million

children to protect them, but now there is mounting evidence that it

could be linked to a sleep disorder Most parents worry about their

child's sleep. We have to get up. But for Caroline Hadfield, it

dominates her life. Come on. Her six-year-old a son Josh has a very

rare condition which means he cannot regulate his sleep patterns.

It came on suddenly at the early part of last year, just after he

was vaccinated against swine flu. Trying to get you to wake up. He

was vaccinated in January 2010 and then three weeks later, he went

from an energetic boy to someone who wanted to sleep. He was

sleeping around 18 hours a day on average. We did not know what was

wrong. It took nearly a year of trips to hospitals and specialists

before Caroline to find out what was wrong with dosh. I put it down

to being the end of term, coming up to half term week. He was tired and

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

properly. You have to support his hand because it was dropping

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

collapses. Are you OK? Even watching something funny on

television brings on an attack. For 11 months, Caroline and her husband

searched for an answer. The we did lumbar puncture, and MRI, cat scan,

just to rule things out. Josh, we have to go to school. Finely in

January this year, Josh was diagnosed with narcolepsy and

catoplexy, a condition that makes him collapsed when he gets excited.

See you later. 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 is on a quadruple dose of Ritalin.

It is heartbreaking. I have lost my son. It is heartbreaking to see

what has happened and to know that this is his life now. He copes with

it fantastically well, but he should not have to because he is 6.

He takes six different tablets every day and he has do, just to

get through the day. That is wrong. As the family struggled to come to

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

there is a link between the swine flu vaccine and Judge's condition.

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

Pandemrix, and there is 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

have come to the capital city Helsinki to find out more.

Public health doctors here have much better ways of keeping closer

tabs on who has had a vaccination and any possible side-effects.

Sleep experts started noticing cases of narcolepsy and catoplexy

here in the spring of 2010. I am meeting Dr Markku Partinen who

runs a specialist clinic in Helsinki. It was he who first

noticed an unusually large number of children developing narcolepsy

and catoplexy. Dr Markku Partinen is an expert in sleep disorders,

but he had never seen so many cases of Chartered narcolepsy as he did

last year. Before 2010, we had one child under nine years old

diagnosed, that was in 2003. Now in In the following months, around 70

more cases of child could narcolepsy came to light, and Dr

Markku Partinen's research suggested a link -- suspected a

link with the vaccine. -- chartered As the cases came to light last

year, it generated media attention and strong public feeling. After we

had information in June and July in about the number of narcoleptic

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

my own children or children of my friends or relatives because the

evidence was already so strong at that point. I told my friends that

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

what the Finnish authorities thought when they saw his research.

The first person to see it was a vaccine specialist Hannah Nohynek.

We had to go out and find out if this was true. Then we needed to

stop the vaccination and find out and eliminate things. That is what

we did. We halted the vaccination campaign as a precautionary measure

so that we could measure what truly was happening and how much that was

in association to the vaccine. So it in the middle of two dozen 10,

Finland with true Pandemrix from its vaccination campaign and

immediately made Dr Markku Partinen's research public. -- in

the middle of 2010. Given the amount of media attention they were

getting and the concerned that parents had, we really had to be

transparent about our results. We could not have kept them to

ourselves. That was an impossibility. Our responsibility

was to publish the results, whether or not Europe or the manufacturer

like debt. Hannah's team published Dr Markku

Partinen's findings and sent them to the European regulator which

started an investigation. At home, conclusions were drawn about the

link between the drug and the vaccine. TRANSLATION: We believe

there is a link between Pandemrix and narcolepsy, and we have a

national working group with a number of experts who are certain

there is a link. The Finnish government has made sure their art

support groups and specialist drugs available to help the families cope

with their lifelong illness. TRANSLATION: We have decided to

take these measures because the decision to acquire the vaccines it

was ours under the threat of a pandemic and therefore the one to

take responsibility for the outcome. And the Finnish government is

promising money as well, pledging to make sure the family is are

looked after for life. The final figure for compensation

for children affected by a narcolepsy in Finland has yet to be

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

compensation, as well as the bright and medical treatment and follow up.

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

regulator investigated Pandemrix, it was being reissued to GPs last

autumn due to the shortage of the seasonal flu vaccine. Caroline

Hadfield is travelling to Liverpool to meet another family coping with

childhood narcolepsy. Are you OK? Nice to meet you. Pauline Carlton

had her whole family vaccinated against swine flu in January 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 is to make me laugh

so much. He had a wicked sense of humour. He was the funny one out of

all my children. He did the silliest things to make me laugh.

It is all gone. All of that has gone. What is left his anger and a

frustrated a little boy, it is heartbreaking. Just like charge,

Lucas will collapse if he starts laughing when he gets excited. He

has been off school for the best part of one year, sometimes

sleeping 18 or 20 hours a day. His weight has doubled and until

recently, he was having regiment violent tantrums. Pauline had no

idea the vaccine was under medicines watchdog and she took her

family to get vaccinated. -- when she took her family to get

vaccinated. I wasn't told that there would be any side effects or

anything. I felt relieved that my kids would not get swine flu.

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. I have to making -- medicate

him at night to put him to sleep. It is just not right, is it? I

thought I was protecting my chart and yet what I have done to protect

them has left him with a disability for the rest of his life. I really

don't know how to handle that. the regulator has spent almost a

year investigating Pandemrix and eventually, in July this year,

decided they could be a link between the vaccine and chartered

narcolepsy. It now recommends 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. That is many fewer than in Finland. The

government doesn't accept there is a link here and Pauline and

Caroline -- for Pauline and Caroline, this compounds their

concerns. They won't acknowledge it. Hopefully people will look into it

and accept responsibility somewhere along the line. That is all we us

for as parents. Angry and frustrated, Pauline and Caroline

don't trust the government's figures and think there may be more

British children waiting for a diagnosis. The things that we are

aiming for is to get it publicised to see if they are more children

are suffering and doctors don't know anything about it. It is

publicity, but not ours. It is publicity for what has happened. We

want the family is going through this to note they are not on their

We would like to have put our questions to the minister involved

but, unlike her Finnish counterpart, she refused to give an interview

and refused to get a comment. The immediate IRA did comment. They

said no connection has been found apart from in Finland and Sweden. I

have come to the west London offices of Glaxo SmithKline to

needs one of their senior managers. I want to know if she will

acknowledge the apparent links between narcolepsy and Pandemrix.

We have not find a causal link. We are working very hard with the

regulatory authorities to try to understand what is happening. We

have conducted studies in the laboratory but also with

independent investigators in cubic to understand what is happening.

you disagree with the finish findings -- findings in Finland

where they say there is a link? the end of the day patient safety

is the most important to us and we would not put out a drug or leave

it out there if we felt there was a true issue. The main European

regulator does see a link. It said, in July, that in Finland and Sweden

at least, the results show an association between the Pandemrix

vaccination and narcolepsy in children and adolescents. It did

also say that the benefits outweigh the desks but further studies are

needed. -- outweighs the risks. This leaves Pauline, Caroline and

their families angry and determined to find answers. With Glaxo and the

politicians and all the rest of it, it's not their children going

through it. At the end of the day they don't care. They will say what

they need to say to make it sound good but they do not care because

it is not their children. This is our children we are going through

it, we care. And if they think that by tapping us on the head and

saying, "There, there it helped loads of other people, bad luck

about yours, go away nicely." It's not going to happen, we are not

going away, we will be making as much of a noise about this until

something is actually done because at the end of the day this is our

kids' futures. 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's irresponsible and it will

expose the British Government to legal actions. I think they should

have told at least to the parents what had been happening and taking

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

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

by Pandemrix. My child went from a very healthy energetic little boy

to 3 weeks after having the vaccine to someone who just wanted to sleep.

Now that's not normal and no one on this earth will ever convince me

that is wasn't to do with that Six years ago we were in the first

to predict a big future for Fleetwood's biggest singer, Alfie

Boe O. Now he is a big star and back in the north-west this week as

part of a sell-out tour. Now he has upset a few people. They have been

This is Alfie Boe or who once used to help make sports cars here in

Blackpool. Now he is back but this time he he is signing autographs.

The queue goes around the block. He is hot property right now. It is

six years ago and Alfie is walking with me on a cold, wet and windy

Fleetwood beach. We made a film then predicting he would be a star.

Back then, it all seemed so simple for Alfie. I will always be Alfie

Boe from Fleetwood, I will never be anything else than that, I am just

a singer. I am an instrument for a beautiful music to entertain people,

that is about it. It just comes out of here and does its job really,

that is about it. Dream the dream? Not bad for a lad who started his

life back in Fleetwood. He is arriving in style it these days. He

has top-ten records here, awards in America and today he is to ring

radio stations. He has 15 interviews lined up and television

appearances. Life is a bit of tabla right now. This morning I got up at

5 o'clock because I was singing on live television this morning at

about 8 o'clock. Does it feel like a bit of a whirlwind at the moment?

A whirlwind in a good sense, not in a negative sense. I am not getting

taken away by betide if you know what I mean. I am swimming with the

current. Like a good Fleetwood boy would do! I have had plenty of

practice! It is this role that has had an impact on his career during

the last year. There is something which has really turned my life

around. It is really something which has been so cool to-do and to

have been asked to play that role for the 25th anniversary was such

an honour. People associate me with that shown now and that role. It is

nice to be associated with something which is so credible and

has stood the test of time for 26 years. He is also an unlikely hit

on YouTube West Matt Lucas. Take a bow you. Take another one. Take one

more about you. Well, the dog like it. Matt Lucas is a good guy. We

worked together on the 25th anniversary and we just hit it off

really well. We did the West End run. He is a good singer and

performer and a good friend. ready. His welfare is my concern!

was living in hotels when I first came over from the States. Because

we were rehearsing every day together he said, I have got a big

enough house, move out of the hotels, I have a few other friends

to stay with me, come and stop. I did and I moved into his attic room.

My pay back four that was two to 10 food because he is not a very good

cook. He is not a very good cook. Anfield has got such a history. I

am a bit Liverpool fan. I was amazed by singing the year and

being surrounded by the cleaning staff who just stopped. The whole

stadium was empty. I was amazed at these acoustics in that place. The

sound just travels. The sound that you get when an goal is scored is

just incredible. And you'll never # Live and Let Die. Live and Let

Die. Live and Let Die. #. Bds of earning a living just on the opera

circuit are long gone. Now Alfie earns a living on the commercial

circuit. I have done a duet with Robert Plant from Led Zeppelin.

Rock god Robert Plant, how did that come about? I was in a bar and I

bumped into him. I thought I have got to talk to end because I will

not get the opportunity again. I thought you would be chatting for

five minutes but about an hour later we were still talking about

music. It was really cool. He has worked with some of the greats in

the opera world and is regarded as an outstanding tenor. His

commercial success has led to some rifts in the opera world. It all

began with his comments on Desert Island Discs. I said I did not like

going to the opera, I did not like going to watch, I would prefer to

be up on the stage doing it. I am a performer, not an observer.

their reaction irritate you at all or did you think what the hell?

made me laugh. Some of the highbrow people that were in the industry

came out and said what they said. I thought it was just ridiculous. It

was like a spoilt little kid in the playground who would not share his

sweets. And how do you see your courier musically moving on? The

album is an interesting next. Do you see you're moved eventually

more to opera full time or do you think you will move away from that?

I do not want to say I have closed the door to opera because it is

great music. It is wonderful music. I love sitting at home and

listening to it. I absolutely adore singing it. It is incredible music

which fills you with such emotion but at the minute I want to try to

discover other genres. I want to try to open the door to other

worlds in the music world and see where that leads me, what I can do

to combine all my interests in music. He sold out most of the

venues on his current 20 three-day tour of Britain. He arrives at

Liverpool on Wednesday and there is a special moment for him, his

family and friends on Friday. He has a homecoming concert at

Blackpool's opera house. Lancashire is always going to be in my blood.

That a red rose is deeply embedded in my heart. You do those dates,

they are going to be special? yeah. When it comes to the world of

opera do you still feel like an outsider? I could not give a damn.

I do not care really. I go into those sorts of places and just be

Alfie Boe and if the white media like me, if they don't, they don't.

I do not try to be something else just because I am working gear. I