12/12/2011

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:00:05. > :00:10.This week for our final programme of the year, I am in Manchester,

:00:10. > :00:15.famous for its Christmas markets, and a venue for the homecoming of

:00:15. > :00:18.one of the country's most famous tenors, Alfie Boe, who would talk

:00:18. > :00:22.to us later. Tonight, the Liverpool boy who

:00:22. > :00:27.suffers from a condition called narcolepsy. His family say it

:00:27. > :00:33.happened after he was vaccinated against swine flu. He was the funny

:00:33. > :00:39.one out of all of my children. He did the silliest things to make me

:00:39. > :00:43.laugh. It is all gone. We are seeking answers, and we will

:00:43. > :00:48.talk to the manufacturers of the vaccine. There is currently no

:00:48. > :00:52.evidence to indicate there is Ailey -- a link between Pandemrix and

:00:52. > :01:02.narcolepsy. And opera start Alfie Boe opens his

:01:02. > :01:26.

:01:26. > :01:30.At this time every year, colds and flu are most likely to spread. A

:01:30. > :01:33.family from Liverpool are among those with serious concerns for a

:01:33. > :01:37.vaccine for swine flu. Pandemrix was given to nearly one million

:01:37. > :01:47.children to protect them, but now there is mounting evidence that it

:01:47. > :01:50.

:01:50. > :01:56.could be linked to a sleep disorder Most parents worry about their

:01:56. > :02:03.child's sleep. We have to get up. But for Caroline Hadfield, it

:02:03. > :02:06.dominates her life. Come on. Her six-year-old a son Josh has a very

:02:06. > :02:12.rare condition which means he cannot regulate his sleep patterns.

:02:12. > :02:19.It came on suddenly at the early part of last year, just after he

:02:19. > :02:23.was vaccinated against swine flu. Trying to get you to wake up. He

:02:23. > :02:29.was vaccinated in January 2010 and then three weeks later, he went

:02:29. > :02:33.from an energetic boy to someone who wanted to sleep. He was

:02:33. > :02:38.sleeping around 18 hours a day on average. We did not know what was

:02:38. > :02:42.wrong. It took nearly a year of trips to hospitals and specialists

:02:42. > :02:47.before Caroline to find out what was wrong with dosh. I put it down

:02:47. > :02:50.to being the end of term, coming up to half term week. He was tired and

:02:50. > :02:53.then he started losing muscle control so he couldn't hold things

:02:53. > :03:03.properly. You have to support his hand because it was dropping

:03:03. > :03:06.

:03:06. > :03:16.Whenever Josh gets excited, he loses control of his muscles and he

:03:16. > :03:23.collapses. Are you OK? Even watching something funny on

:03:23. > :03:29.television brings on an attack. For 11 months, Caroline and her husband

:03:29. > :03:36.searched for an answer. The we did lumbar puncture, and MRI, cat scan,

:03:36. > :03:41.just to rule things out. Josh, we have to go to school. Finely in

:03:41. > :03:45.January this year, Josh was diagnosed with narcolepsy and

:03:45. > :03:52.catoplexy, a condition that makes him collapsed when he gets excited.

:03:52. > :03:57.See you later. With the help of medication, his parents and a broad

:03:57. > :04:02.minded school, Josh copes with his illness. While his friends play, he

:04:02. > :04:08.takes naps in the classroom and he is on a quadruple dose of Ritalin.

:04:08. > :04:12.It is heartbreaking. I have lost my son. It is heartbreaking to see

:04:12. > :04:17.what has happened and to know that this is his life now. He copes with

:04:17. > :04:22.it fantastically well, but he should not have to because he is 6.

:04:22. > :04:27.He takes six different tablets every day and he has do, just to

:04:27. > :04:30.get through the day. That is wrong. As the family struggled to come to

:04:30. > :04:36.terms with what has happened to their son, they have often asked if

:04:36. > :04:40.there is a link between the swine flu vaccine and Judge's condition.

:04:41. > :04:44.Along with around one million other children in Britain, he was given

:04:44. > :04:51.Pandemrix, and there is now evidence that that vaccine may have

:04:51. > :04:55.something to do with his illness. The evidence has come from Finland,

:04:55. > :05:00.one of the first countries to report concerns about Pandemrix. I

:05:00. > :05:03.have come to the capital city Helsinki to find out more.

:05:03. > :05:08.Public health doctors here have much better ways of keeping closer

:05:08. > :05:12.tabs on who has had a vaccination and any possible side-effects.

:05:12. > :05:20.Sleep experts started noticing cases of narcolepsy and catoplexy

:05:20. > :05:28.here in the spring of 2010. I am meeting Dr Markku Partinen who

:05:29. > :05:33.runs a specialist clinic in Helsinki. It was he who first

:05:33. > :05:37.noticed an unusually large number of children developing narcolepsy

:05:37. > :05:42.and catoplexy. Dr Markku Partinen is an expert in sleep disorders,

:05:42. > :05:51.but he had never seen so many cases of Chartered narcolepsy as he did

:05:51. > :06:01.last year. Before 2010, we had one child under nine years old

:06:01. > :06:11.

:06:11. > :06:15.diagnosed, that was in 2003. Now in In the following months, around 70

:06:15. > :06:22.more cases of child could narcolepsy came to light, and Dr

:06:22. > :06:32.Markku Partinen's research suggested a link -- suspected a

:06:32. > :06:37.link with the vaccine. -- chartered As the cases came to light last

:06:37. > :06:44.year, it generated media attention and strong public feeling. After we

:06:44. > :06:49.had information in June and July in about the number of narcoleptic

:06:49. > :06:57.saying children after Pandemrix, no way I would have given it to any of

:06:57. > :07:05.my own children or children of my friends or relatives because the

:07:05. > :07:10.evidence was already so strong at that point. I told my friends that

:07:10. > :07:13.there was no risk, but don't give it to children. And that is exactly

:07:13. > :07:17.what the Finnish authorities thought when they saw his research.

:07:17. > :07:23.The first person to see it was a vaccine specialist Hannah Nohynek.

:07:23. > :07:27.We had to go out and find out if this was true. Then we needed to

:07:27. > :07:34.stop the vaccination and find out and eliminate things. That is what

:07:34. > :07:39.we did. We halted the vaccination campaign as a precautionary measure

:07:39. > :07:46.so that we could measure what truly was happening and how much that was

:07:46. > :07:52.in association to the vaccine. So it in the middle of two dozen 10,

:07:52. > :07:57.Finland with true Pandemrix from its vaccination campaign and

:07:57. > :08:04.immediately made Dr Markku Partinen's research public. -- in

:08:04. > :08:08.the middle of 2010. Given the amount of media attention they were

:08:08. > :08:12.getting and the concerned that parents had, we really had to be

:08:12. > :08:17.transparent about our results. We could not have kept them to

:08:17. > :08:22.ourselves. That was an impossibility. Our responsibility

:08:22. > :08:27.was to publish the results, whether or not Europe or the manufacturer

:08:27. > :08:31.like debt. Hannah's team published Dr Markku

:08:31. > :08:39.Partinen's findings and sent them to the European regulator which

:08:39. > :08:47.started an investigation. At home, conclusions were drawn about the

:08:47. > :08:52.link between the drug and the vaccine. TRANSLATION: We believe

:08:52. > :08:55.there is a link between Pandemrix and narcolepsy, and we have a

:08:55. > :09:00.national working group with a number of experts who are certain

:09:00. > :09:05.there is a link. The Finnish government has made sure their art

:09:05. > :09:10.support groups and specialist drugs available to help the families cope

:09:10. > :09:14.with their lifelong illness. TRANSLATION: We have decided to

:09:14. > :09:19.take these measures because the decision to acquire the vaccines it

:09:19. > :09:27.was ours under the threat of a pandemic and therefore the one to

:09:27. > :09:31.take responsibility for the outcome. And the Finnish government is

:09:31. > :09:36.promising money as well, pledging to make sure the family is are

:09:36. > :09:39.looked after for life. The final figure for compensation

:09:39. > :09:44.for children affected by a narcolepsy in Finland has yet to be

:09:45. > :09:50.agreed, but what has been is the principle that there will be

:09:50. > :09:56.compensation, as well as the bright and medical treatment and follow up.

:09:56. > :10:02.Back in the UK however, nothing changed. In fact, even while the EU

:10:02. > :10:07.regulator investigated Pandemrix, it was being reissued to GPs last

:10:07. > :10:11.autumn due to the shortage of the seasonal flu vaccine. Caroline

:10:11. > :10:19.Hadfield is travelling to Liverpool to meet another family coping with

:10:19. > :10:23.childhood narcolepsy. Are you OK? Nice to meet you. Pauline Carlton

:10:23. > :10:28.had her whole family vaccinated against swine flu in January this

:10:28. > :10:32.year, long after the vaccine had been withdrawn in Finland. Soon

:10:32. > :10:38.after the vaccination, her youngest son Lucas developed the same

:10:38. > :10:43.symptoms as Josh. He was a humorous little boy, he is to make me laugh

:10:43. > :10:48.so much. He had a wicked sense of humour. He was the funny one out of

:10:48. > :10:56.all my children. He did the silliest things to make me laugh.

:10:56. > :11:03.It is all gone. All of that has gone. What is left his anger and a

:11:03. > :11:07.frustrated a little boy, it is heartbreaking. Just like charge,

:11:07. > :11:11.Lucas will collapse if he starts laughing when he gets excited. He

:11:11. > :11:16.has been off school for the best part of one year, sometimes

:11:16. > :11:23.sleeping 18 or 20 hours a day. His weight has doubled and until

:11:23. > :11:30.recently, he was having regiment violent tantrums. Pauline had no

:11:30. > :11:32.idea the vaccine was under medicines watchdog and she took her

:11:32. > :11:37.family to get vaccinated. -- when she took her family to get

:11:37. > :11:47.vaccinated. I wasn't told that there would be any side effects or

:11:47. > :11:48.

:11:48. > :11:54.anything. I felt relieved that my kids would not get swine flu.

:11:54. > :11:58.just like Caroline's son Josh, within three weeks of the jab,

:11:58. > :12:04.Lucas was a different child. I have to medicate my son to keep him

:12:04. > :12:10.awake, I have to medicate him every day. I have to making -- medicate

:12:10. > :12:14.him at night to put him to sleep. It is just not right, is it? I

:12:14. > :12:19.thought I was protecting my chart and yet what I have done to protect

:12:19. > :12:28.them has left him with a disability for the rest of his life. I really

:12:28. > :12:32.don't know how to handle that. the regulator has spent almost a

:12:32. > :12:37.year investigating Pandemrix and eventually, in July this year,

:12:37. > :12:43.decided they could be a link between the vaccine and chartered

:12:43. > :12:47.narcolepsy. It now recommends Pandemrix is not given to people

:12:47. > :12:52.under 20 unless there is no alternative. According to UK health

:12:52. > :12:57.records, only seven children have developed narcolepsy after taking

:12:57. > :13:01.Pandemrix in the UK. That is many fewer than in Finland. The

:13:01. > :13:06.government doesn't accept there is a link here and Pauline and

:13:06. > :13:12.Caroline -- for Pauline and Caroline, this compounds their

:13:12. > :13:17.concerns. They won't acknowledge it. Hopefully people will look into it

:13:17. > :13:22.and accept responsibility somewhere along the line. That is all we us

:13:22. > :13:27.for as parents. Angry and frustrated, Pauline and Caroline

:13:27. > :13:32.don't trust the government's figures and think there may be more

:13:32. > :13:35.British children waiting for a diagnosis. The things that we are

:13:35. > :13:40.aiming for is to get it publicised to see if they are more children

:13:40. > :13:50.are suffering and doctors don't know anything about it. It is

:13:50. > :13:50.

:13:50. > :13:53.publicity, but not ours. It is publicity for what has happened. We

:13:53. > :14:03.want the family is going through this to note they are not on their

:14:03. > :14:07.

:14:07. > :14:11.We would like to have put our questions to the minister involved

:14:11. > :14:21.but, unlike her Finnish counterpart, she refused to give an interview

:14:21. > :14:25.

:14:25. > :14:31.and refused to get a comment. The immediate IRA did comment. They

:14:31. > :14:36.said no connection has been found apart from in Finland and Sweden. I

:14:36. > :14:42.have come to the west London offices of Glaxo SmithKline to

:14:42. > :14:51.needs one of their senior managers. I want to know if she will

:14:51. > :14:57.acknowledge the apparent links between narcolepsy and Pandemrix.

:14:57. > :15:02.We have not find a causal link. We are working very hard with the

:15:02. > :15:07.regulatory authorities to try to understand what is happening. We

:15:08. > :15:13.have conducted studies in the laboratory but also with

:15:13. > :15:22.independent investigators in cubic to understand what is happening.

:15:22. > :15:28.you disagree with the finish findings -- findings in Finland

:15:28. > :15:31.where they say there is a link? the end of the day patient safety

:15:31. > :15:39.is the most important to us and we would not put out a drug or leave

:15:39. > :15:45.it out there if we felt there was a true issue. The main European

:15:45. > :15:52.regulator does see a link. It said, in July, that in Finland and Sweden

:15:52. > :15:57.at least, the results show an association between the Pandemrix

:15:57. > :16:02.vaccination and narcolepsy in children and adolescents. It did

:16:02. > :16:12.also say that the benefits outweigh the desks but further studies are

:16:12. > :16:17.

:16:18. > :16:23.needed. -- outweighs the risks. This leaves Pauline, Caroline and

:16:23. > :16:26.their families angry and determined to find answers. With Glaxo and the

:16:26. > :16:30.politicians and all the rest of it, it's not their children going

:16:30. > :16:33.through it. At the end of the day they don't care. They will say what

:16:33. > :16:36.they need to say to make it sound good but they do not care because

:16:37. > :16:40.it is not their children. This is our children we are going through

:16:40. > :16:43.it, we care. And if they think that by tapping us on the head and

:16:43. > :16:46.saying, "There, there it helped loads of other people, bad luck

:16:46. > :16:50.about yours, go away nicely." It's not going to happen, we are not

:16:50. > :16:53.going away, we will be making as much of a noise about this until

:16:53. > :16:58.something is actually done because at the end of the day this is our

:16:58. > :17:01.kids' futures. Right now, the families are only focused on

:17:01. > :17:03.getting their children as well as they can be. However lawyers in

:17:03. > :17:08.Finland believe they might have a good case for financial

:17:08. > :17:13.compensation in the future. I think it's irresponsible and it will

:17:13. > :17:16.expose the British Government to legal actions. I think they should

:17:16. > :17:22.have told at least to the parents what had been happening and taking

:17:22. > :17:25.place elsewhere. Legal action is certainly a way off but Caroline

:17:25. > :17:33.Hadfield remains convinced that her son has had his whole life changed

:17:33. > :17:38.by Pandemrix. My child went from a very healthy energetic little boy

:17:38. > :17:42.to 3 weeks after having the vaccine to someone who just wanted to sleep.

:17:42. > :17:52.Now that's not normal and no one on this earth will ever convince me

:17:52. > :17:58.

:17:58. > :18:03.that is wasn't to do with that Six years ago we were in the first

:18:03. > :18:09.to predict a big future for Fleetwood's biggest singer, Alfie

:18:09. > :18:16.Boe O. Now he is a big star and back in the north-west this week as

:18:16. > :18:26.part of a sell-out tour. Now he has upset a few people. They have been

:18:26. > :18:38.

:18:38. > :18:44.This is Alfie Boe or who once used to help make sports cars here in

:18:44. > :18:54.Blackpool. Now he is back but this time he he is signing autographs.

:18:54. > :18:59.The queue goes around the block. He is hot property right now. It is

:18:59. > :19:04.six years ago and Alfie is walking with me on a cold, wet and windy

:19:04. > :19:11.Fleetwood beach. We made a film then predicting he would be a star.

:19:11. > :19:15.Back then, it all seemed so simple for Alfie. I will always be Alfie

:19:15. > :19:20.Boe from Fleetwood, I will never be anything else than that, I am just

:19:20. > :19:26.a singer. I am an instrument for a beautiful music to entertain people,

:19:26. > :19:36.that is about it. It just comes out of here and does its job really,

:19:36. > :19:36.

:19:36. > :19:43.that is about it. Dream the dream? Not bad for a lad who started his

:19:43. > :19:50.life back in Fleetwood. He is arriving in style it these days. He

:19:50. > :19:55.has top-ten records here, awards in America and today he is to ring

:19:55. > :20:03.radio stations. He has 15 interviews lined up and television

:20:03. > :20:08.appearances. Life is a bit of tabla right now. This morning I got up at

:20:08. > :20:14.5 o'clock because I was singing on live television this morning at

:20:14. > :20:20.about 8 o'clock. Does it feel like a bit of a whirlwind at the moment?

:20:20. > :20:25.A whirlwind in a good sense, not in a negative sense. I am not getting

:20:25. > :20:33.taken away by betide if you know what I mean. I am swimming with the

:20:33. > :20:43.current. Like a good Fleetwood boy would do! I have had plenty of

:20:43. > :20:45.

:20:45. > :20:51.practice! It is this role that has had an impact on his career during

:20:51. > :21:01.the last year. There is something which has really turned my life

:21:01. > :21:03.

:21:03. > :21:08.around. It is really something which has been so cool to-do and to

:21:08. > :21:14.have been asked to play that role for the 25th anniversary was such

:21:14. > :21:18.an honour. People associate me with that shown now and that role. It is

:21:18. > :21:28.nice to be associated with something which is so credible and

:21:28. > :21:29.

:21:29. > :21:39.has stood the test of time for 26 years. He is also an unlikely hit

:21:39. > :21:40.

:21:40. > :21:48.on YouTube West Matt Lucas. Take a bow you. Take another one. Take one

:21:48. > :21:53.more about you. Well, the dog like it. Matt Lucas is a good guy. We

:21:53. > :22:00.worked together on the 25th anniversary and we just hit it off

:22:00. > :22:10.really well. We did the West End run. He is a good singer and

:22:10. > :22:20.

:22:20. > :22:26.performer and a good friend. ready. His welfare is my concern!

:22:26. > :22:30.was living in hotels when I first came over from the States. Because

:22:30. > :22:34.we were rehearsing every day together he said, I have got a big

:22:34. > :22:41.enough house, move out of the hotels, I have a few other friends

:22:41. > :22:46.to stay with me, come and stop. I did and I moved into his attic room.

:22:46. > :22:56.My pay back four that was two to 10 food because he is not a very good

:22:56. > :23:00.

:23:00. > :23:05.cook. He is not a very good cook. Anfield has got such a history. I

:23:05. > :23:10.am a bit Liverpool fan. I was amazed by singing the year and

:23:10. > :23:18.being surrounded by the cleaning staff who just stopped. The whole

:23:18. > :23:28.stadium was empty. I was amazed at these acoustics in that place. The

:23:28. > :23:29.

:23:29. > :23:39.sound just travels. The sound that you get when an goal is scored is

:23:39. > :24:13.

:24:13. > :24:23.just incredible. And you'll never # Live and Let Die. Live and Let

:24:23. > :24:28.

:24:28. > :24:33.Die. Live and Let Die. #. Bds of earning a living just on the opera

:24:33. > :24:43.circuit are long gone. Now Alfie earns a living on the commercial

:24:43. > :25:05.

:25:05. > :25:11.circuit. I have done a duet with Robert Plant from Led Zeppelin.

:25:11. > :25:15.Rock god Robert Plant, how did that come about? I was in a bar and I

:25:15. > :25:19.bumped into him. I thought I have got to talk to end because I will

:25:19. > :25:22.not get the opportunity again. I thought you would be chatting for

:25:22. > :25:28.five minutes but about an hour later we were still talking about

:25:28. > :25:33.music. It was really cool. He has worked with some of the greats in

:25:33. > :25:38.the opera world and is regarded as an outstanding tenor. His

:25:38. > :25:44.commercial success has led to some rifts in the opera world. It all

:25:44. > :25:49.began with his comments on Desert Island Discs. I said I did not like

:25:49. > :25:56.going to the opera, I did not like going to watch, I would prefer to

:25:56. > :26:01.be up on the stage doing it. I am a performer, not an observer.

:26:01. > :26:06.their reaction irritate you at all or did you think what the hell?

:26:06. > :26:12.made me laugh. Some of the highbrow people that were in the industry

:26:12. > :26:16.came out and said what they said. I thought it was just ridiculous. It

:26:16. > :26:24.was like a spoilt little kid in the playground who would not share his

:26:24. > :26:32.sweets. And how do you see your courier musically moving on? The

:26:32. > :26:36.album is an interesting next. Do you see you're moved eventually

:26:36. > :26:41.more to opera full time or do you think you will move away from that?

:26:41. > :26:45.I do not want to say I have closed the door to opera because it is

:26:45. > :26:52.great music. It is wonderful music. I love sitting at home and

:26:52. > :26:57.listening to it. I absolutely adore singing it. It is incredible music

:26:58. > :27:02.which fills you with such emotion but at the minute I want to try to

:27:02. > :27:06.discover other genres. I want to try to open the door to other

:27:06. > :27:16.worlds in the music world and see where that leads me, what I can do

:27:16. > :27:22.

:27:22. > :27:28.to combine all my interests in music. He sold out most of the

:27:28. > :27:32.venues on his current 20 three-day tour of Britain. He arrives at

:27:32. > :27:37.Liverpool on Wednesday and there is a special moment for him, his

:27:37. > :27:44.family and friends on Friday. He has a homecoming concert at

:27:44. > :27:48.Blackpool's opera house. Lancashire is always going to be in my blood.

:27:48. > :27:55.That a red rose is deeply embedded in my heart. You do those dates,

:27:55. > :28:00.they are going to be special? yeah. When it comes to the world of

:28:00. > :28:05.opera do you still feel like an outsider? I could not give a damn.

:28:05. > :28:10.I do not care really. I go into those sorts of places and just be

:28:10. > :28:16.Alfie Boe and if the white media like me, if they don't, they don't.

:28:16. > :28:26.I do not try to be something else just because I am working gear. I

:28:26. > :28:33.