28/01/2013 Inside Out West

$:/STARTFEED. Hello from Frome in Somerset, where

we are uncovering new evidence about a vaccine given to nearly a

million children. This boy suffers from narcolepsy

which causes him to suddenly fall asleep without warning. Tonight, we

reveal new evidence that links his condition with a vaccine he was

given against swine flu. The risk is so much increased it is

very unlikely that this is a biased result. It is likely to be real.

Also tonight, will young families in larger council properties be

kicked out of their homes while older tenants are allowed to stay

put in theirs? I was quite shocked. I don't think

it is a right at all. Whoever came up with the idea has not really

thought it through. And...

The traditional Irish song with distinctly West Country roots.

I'm Alastair McKee, and this is Just over a year ago we met a

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

that was given to nearly a million children. Pandemrix was designed to

protect against swine flu. But now Inside Out West has new evidence

that links it with a sleep disorder called narcolepsy. Here's our

Caroline Hadfield is about to go on a long journey from her home on

Frome to get justice for her son. Her seven-year-old son, Josh, has a

very rare condition that means he can't regulate his sleep patterns,

which she believes was caused by his vaccination against swine flu

in 2010. A year later he was finally

diagnosed with narcolepsy, which makes him sleep most of the time,

and catoplexy, a condition that makes him collapse when he gets

You see other children who can laugh and enjoy things. Yes, Josh

laughs and enjoys things, but his reaction means he goes unconscious.

The swine flu vaccine that Josh took, is alled Pandemrix. -- is

called an Pandemrix. It is made by GlaxoSmithKline, one of the world's

largest drugs companies. They have always denied any link. But tonight

we can reveal new evidence which has made them think again. And one

of the country's leading experts in vaccination also speaks out. If you

look at the figures, from what I can see, the risk is so much

increased that it is very unlikely this is a biased result. It is

likely to be below. It was the lethal threat of the

swine flu pandemic which made Caroline goal for the vaccination

offered to all under fives. Now there is growing and that --

evidence internationally that some youngsters like Josh developed both

narcolepsy and catoplexy within weeks. For instance, in Finland,

where I visited this leading sleep specialist a year ago, he told me

the risk of narcolepsy was higher. When I showed the results to GSK

they denied any link. There is currently no evidence to suggest a

link between Pandemrix and narcolepsy. We're working very hard

to with the regulator Ray authorities to understand what is

happening. -- regulatory. And after we first featured Josh's

story, his mother was inundated with calls from other families.

Hearing their stories brings her son's condition home. They were

shocked to see their child's story being told by someone else. They

were relieved there is someone they can go on talk to. Sorry...

And we have now obtained evidence that, since our documentary, more

children are being reported to to the British authorities with a

suspected reaction to the bank scene.

At the time of our broadcast a year ago, there were seven document

cases of narcolepsy brought into authorities, but since then the

number has more than doubled to 15. Last April, new evidence emerged

from Ireland about a link with that the vaccine. An increased risk of

the sleeping disorder narcolepsy in people aged between five and 19

years old he received the Pandemrix swine flu vaccine. Following this

report, the Health Protection Agency in England commissioned a

study to see if children here were also affected by the vaccine from

GlaxoSmithKline. Caroline is anxious about answers it may bring.

In the meantime, she has decided to go to Ireland to find out more.

She has come to meet her campaigning counterpart in Dublin,

who is also convinced the Pandemrix and vaccine caused her son, Alex,

develop narcolepsy. I still remember him having the

test and it being confirmed, and that horrible sinking feeling. Even

though we knew at that stage what it was, it was still like someone

had hit us. Mairead Lawless has met the Irish

health minister, who is now considering help.

A we got a promise from the Minister for Health here that a

support package proposal would be put to Government prior to the

summer, but that has not happened. We are now putting pressure on them

to do that. Unfortunately, our Government is on the same lines,

because Glaxo's is -- GSK is denying it.

So, as Caroline waits for the results of the study on English

children like Josh, she decides to come to an international conference

in Manchester. It is an opportunity to meet other

families affected and talk to experts who are taking blood from

patients in the search for better treatment.

My hope is that we will find a blood test for narcolepsy and in 10

or 20 years we will be able to prevent narcolepsy and treat the

people who have it better. I saw your documentary it this time last

year. That was a big help to us, as parents, with a child with

narcolepsy. It does take something pretty major

for people to realise they are not on their own. I a couple of weeks

ago, I finally got hold of the Health Protection Agency's study on

English children. This is the report Caroline has been waiting

for for over idea of, of which she hopes will prove that Pandemrix

caused her son's devastating condition.

The while the full paper is still being considered for publication,

the in Finland, Sweden and Ireland. They found a tenfold increased risk

in the condition within six months of having the jab, which suggests a

causal association consistent with reports from Finland and Sweden.

GSK saved the road development there was no data suggesting a

potential for an increased risk of narcolepsy among those facts are

needed. -- vaccinated. I had brought Caroline to hear the

results from one of the country's leading and vaccine experts,

Professor Adam Finn who carried out one of the original trials of

Pandemrix on children. They found there was somewhere

between 10 and 16 times more likely to have had Pandemrix than other

children. That confirms studies done in other countries. These

researchers have put a number on it and said in their estimation the

disc was something like one in 52,000. That is a lot more positive

than other studies, because at least they are saying there is an

increase. Absolutely. I suppose the only silver lining to this cloud is

that it will perhaps mean we understand better, firstly how

vaccines work and they can cause side-effects, and also, what is the

cause of narcolepsy and what potentially is the cure?

High, it was a very interesting meeting. That is the first report I

have seen that it shows there is at 10-16 fold increase in cases since

the vaccine was given, so that is a huge leap forward, and I cannot see

how the Government can turn around and say there is no link, because

obviously there is. That European Medicines Agency have now told me

there is an association between Pandemrix and narcolepsy in

children. It has ordered manufacturer GSK to commit to a

complex research programme to look at the root causes. GSK say they

are working hard to better understand the researched emerging

from a select number of countries. A we sent the new study on English

children to GSK. This time, they did not want to do an interview,

but there are no longer denying there is evidence suggesting there

could be a causal link between The Department of Health refused to

comment, referring us to a statement by the Medicines and

Health Care regulatory Agency. It Josh and other children have had

their applications for vaccines damage payment turned down. The DWP,

who are responsible for this, has told me there is currently

insufficient medical evidence to show alike. That is something

Carolina and the experts I have spoken to disagree with.

These children are now affected for the rest of their lives. Their

whole lives have been changed, and they need someone to help them.

Do coming up... Goal I'll be here in sunshine or in

shadow. At a little piece of Porter's Head

which will be forever Ireland. -- It has become known as the bedroom

tax and could leave nearly 700,000 of the country's poorest households

with a very painful decision - either move out of your home or

face a hefty cut to your housing benefit. But this new welfare

change will not affect pensioners, leaving some local authorities and

campaigners asking if the new rules In April this year, the housing

benefit rules are changing. That means some people will receive less

money. Who ever came up with the idea has not really thought it

through. There are concerns that it is going

to cause conflict between young and old. While some lose money,

pensioners' housing benefit remains the same.

We certainly see a lot of people getting angry as they start to

realise the extent to which the older generation have pushed their

obligations onto the young. So, what does this welfare reform

really mean for those living in the West's social housing?

Seven-year-old Alfie loves his bedroom. He loves to read just

before bedtime. Due to changes in the benefits system this year,

Alfie might need to soon share his bedroom with his 14-year-old

brother Matthew and Matthew is a big football fan. With their

different and quite noisy interests, sharing a bed from might be a bit

of a challenge. But there is another reason it might be

different. My son Matthew has autism, so he needs his own space.

He is 14 and he is going through puberty. Under the new housing

benefit changes, Lawro what now only get enough money to rent a

house with one bedroom for her two sons. That is because children of

the same sex who are under the age of 16 are expected to share a

bedroom. Nor have to pay the extra rent herself or move to a smaller

home. But some local authorities are concerned they might not be

enough smaller properties and some people could end up homeless.

not build houses. However there is also the situation of their not

being enough money. Many young families are in work, but cannot

pay their bills with the salaries they receive. We have an imbalance

and it will stay with us for some period of time. The haves will get

richer and the have-nots will get poorer. In the end that will lead

to a social breakdown. Rick is concerned that young and old are

been treated differently by the welfare changes and unlike younger

people, pensioners will not have their benefits affected and will

not have to move out of their properties. I don't think it is

right. Whoever came up with the idea has not thought it through.

Christine and Bill Rendell used to live in a three-bedroom house and

are fully entitled to claim the benefit to stay there. This is an

would dog Max coming to greet you. The a have decided to do their bit

to help younger people who might find themselves without a house in

April. For them, it meant a move after 36 years in the family home.

It had to get rid of staff, but it had to go. Once you get in the

property, you think, yes, we are here. We are really over the moon

and we are happy to think we have done it. If some people thought a

little bit more about somebody else coming on behind them who may need

help, you know, they have had their chance. They are living in a

property they could give up to the young, so perhaps there should be

penalised. I can say that now because I had moved out! Sir, Brian

and Christine think older people should consider downsizing, but are

pensioners who are claiming money for spare rooms causing anger among

its those whose benefits have been cut? Certainly the younger

generation are angry about the older generation portion of their

responsibilities on to them. Deep Intergenerational Foundation are

researching how the older generation are being treated

differently. There are a lot of all the pensioners who are comfortably

off and are treated be friendly. Ros Altmann it is the director of

Saga who provide health care and insurance for people over 50. She

thinks the same rules should apply to everyone. That would be a more

reasonable way of judging how the benefits system works than

arbitrarily saying, this age group can only have a subsidy for one-

bedroom, a different age group can have subsidy for more bedrooms. It

is not the way the housing market works, it is not the way societies

work and it is not how families work. Shosh Copley owns her own

four-bedroom house. She signed up to a scheme to share it with a

younger person who is looking for affordable housing. Her younger

house mate is Millie. The application process that brought

them together is a bit like joining a dating agency. It has held Shosh

Copley out of a difficult situation later air in life. My husband died

a few years ago. There anything I tend to stick to is the house.

were young, I think I would want to make my own way, I would not want

to look with resentment at people who have made it. People need to

have personal responsibility. Yes, it is probably wrong but I am

living in a house was so many bedrooms, but I hope I have changed

that. Voluntary downsizing might be a way

of helping younger people who will struggle when the housing benefit

is reduced, but Laura, Matthew and Alfie are adamant they are staying

put in their home, even if they have to find another �60 a month.

It would be easier to live here than downsize to a two bedroom.

When we moved here, Alfie was seven months old. He has got all of his

friends here and I don't want to take him out of school. I probably

will remain living here and pay the council the extra money.

Now, of Danny Boy is one of those instantly recognisable songs that

everyone knows at least some of the words to. In our final film tonight,

while the world celebrates the centenary of this famously Irish

song, I had been tracing its less well-known West Country brutes. --

roots. In a quiet corner of Porter's Head stands a statue

called The Lady Sings. The words of her song are craft around the

plinth. I will be here in sunshine The words are from Danny Boy, a

song which has been recorded by everyone from Willie Nelson to

Gracie Fields. It is famous all over the world. What is less known

is that the words were written here in Porter's Head by Fred Weatherly.

Why should we be interested in Fred Weatherly? Because he wrote 3,000

songs, as many songs as Rabbie Burns, and yet he is unknown

outside the West Country. Those 3,000 songs include Bravo Bristol

and Roses of Picardy. This was built to commemorate Danny Boy.

2013 is that 100 eight macro anniversary of the song. So, he was

Danny Boy. -- 2013 it is the 100th anniversary of the song. This is

the house where Fred was born. His nephew reveals some family secrets.

He was a barrister and his songwriting was a hobby. There are

stories of him being on his way to court cases writing songs on the

train. Danny Boy it is this famous Irish traditional song. It is sung

to a traditional tune. However, the song itself was written by a man

very much rooted in the West Country. Had he been to Ireland?

Was the a fan of Ireland? He had not been to Ireland as far as I

know and he didn't have any strong feelings one way or the other over

what was happening in Ireland. he captured the spirit of Ireland

quite beautifully. How did you come to write those words? That is a bit

of a mystery. Nobody really knows. It is just that he had a set of

words that he had written in 1910 for another song. His sister-in-law

from America had introduced him to be -- to the Londonderry Air and he

saw that the words would fit back tune nicely and then in 1913 it was

first published. So this year being the Centennial anniversary, how are

you marking the anniversary? We are commissioning a new version of

Danny Boy. Bristol band Carmina rose to the challenge of making

this new recording, appropriately enough in Ireland. How did you go

about creating a new interpretation of this song? Danny Boy was an

Edwardian parlour song in a way. I see it as a traditional Irish tune.

One of the hallmarks is the simplification of the courts. -- of

the courts. Do you think Fred Weatherly would approve of your

version? It would be nice if he did. We have bought some jazz to

Whitbread the saxophone and piano. I would like to pin back Fred would

appreciate that blending. -- I would like to think. Over the years,

the song has been used by Unionists and loyalists in Ireland. In his

autobiography he says that Danny Boy it is sung by the Sinn Fein and

Ulster men alike. Obviously he knew the song had meaning? Yes, he

recognised it was being sung across the world. Fred made he's position

clear when he said that there is nothing of the rebel song in it.

For years there has been speculation of a Lost Bird first. -

Mark -- eight lost a third of verse. Here he has written in longhand the

whole of the second verse and states in the letter it is the last

one. Fred live most of his life in the West Country, including

Grosvenor Lodge in Combe Down, the house where he brickworks to Danny

Boy. -- where he wrote the words to Danny Boy. He had a son but died

and there is speculation that the song is dedicated to him. However,

he wrote the first verse of Danny Boy seven months before his son

died and made no connection between the song and any personal grief he

may have felt at the time. So, the mystery continues. And perhaps it

is this mystery which helps explain the song's enduring appeal. Whether

it is sunk as an anthem or at a funeral. It has these strong themes

of mortality and laugh, which I think everyone can relate to.

a lovely song and a lovely tune. Fred was buried in Bath and he will

always be remembered as the writer of one of the world's favourite

That new version of Danny Boy by Carmina is due to be released on St

Patrick's Day which is March 17th. That is it for tonight. You can

keep in touch with what we are up to on Sir Peter Fahy. You can also

e-mail us. -- on Twitter. Next week, we investigate concerns about how

the children's air ambulance is spending its money. If the