:00:08. > :00:14.Tonight we're reporting on concerns about a vaccine given to nearly one
:00:14. > :00:17.million children. This boy suffers from a condition
:00:17. > :00:22.called narcolepsy which causes and to suddenly fall asleep without
:00:22. > :00:28.warning. His family say it all happened after he was vaccinated
:00:28. > :00:36.against swine flu. My child when from a healthy and energetic young
:00:36. > :00:43.boy to someone who just wanted to sleep. No one will ever convince me
:00:43. > :00:47.that it wasn't as a consequence. Tonight, we are seeking answers and
:00:47. > :00:57.bowls beat to the manufacturers of the vaccine. There is currently no
:00:57. > :00:57.
:00:57. > :01:00.evidence to suggest a causal link. Also in the programme tonight -
:01:00. > :01:07.after the M5 Crash, is it time to install automatic fog warning
:01:07. > :01:13.lights on our motorways? Ahead of us, we noticed a wall of white and
:01:13. > :01:19.I said, that's the thickest fog I've ever seen. There should be
:01:19. > :01:29.some way of giving warnings ahead of time.
:01:29. > :01:31.
:01:31. > :01:34.This is Inside Out West. First tonight, we're meeting a
:01:34. > :01:36.family from here in Frome with some serious concerns about a vaccine
:01:37. > :01:39.that was given to nearly one million children. Pandemrix was
:01:39. > :01:42.designed to protect children against swine flu. But now, there's
:01:42. > :01:52.mounting evidence it could be linked with a sleep disorder called
:01:52. > :01:52.
:01:52. > :01:55.narcolepsy. Here's our health correspondent, Matthew Hill.
:01:55. > :02:04.Most parents worry about their child's sleep, but for Caroline
:02:04. > :02:09.Hadfield it dominates her life. Her six-year-old son Josh has a very
:02:09. > :02:13.rare condition that means he can't regulate his sleep patterns. It
:02:13. > :02:16.came on suddenly in the early part of last year, just after he was
:02:16. > :02:18.vaccinated against Swine Flu. He had the vaccination in January 2010
:02:18. > :02:28.then three weeks later suddenly went from a very healthy energetic
:02:28. > :02:31.
:02:31. > :02:37.boy to someone who just wanted to sleep. He was sleeping on average
:02:37. > :02:40.about 18 hours per day. We didn't know what was wrong. It took nearly
:02:40. > :02:48.a year of trips to hospitals and specialists for Caroline to find
:02:48. > :02:52.out what was wrong with Josh. Initially, I put it down to being
:02:52. > :02:54.the end of them coming up to half term week he was tired and then he
:02:54. > :02:57.started losing muscle control so he couldn't hold things properly he
:02:57. > :03:04.needed you to support his hand because it was just dropping
:03:04. > :03:07.forward or anything like that it was horrible.
:03:07. > :03:10.Whenever Josh gets excited, he loses control of his muscles and he
:03:10. > :03:13.collapses, even watching something funny on the TV brings on an attack
:03:14. > :03:17.and for 11 months Caroline and her husband searched for an answer, He
:03:17. > :03:27.dad a cat scan, an MRI, lumbar puncture, more blood tests than I
:03:27. > :03:39.
:03:39. > :03:42.can shake a hat at just to try to Finally in January this year, Josh
:03:42. > :03:52.was diagnosed with narcolepsy and a condition associated with it called
:03:52. > :03:53.
:03:53. > :03:59.cataplexy. With the help of medication, his parents and a broad
:03:59. > :04:04.minded school, Josh copes with his illness. While his friends play, he
:04:04. > :04:10.takes naps in the classroom and he's on a quadruple dose of Ritalin.
:04:10. > :04:14.It's heartbreaking, I've lost my son. It's heartbreaking to see
:04:14. > :04:20.what's happened and to know this is his life now. He copes with it
:04:20. > :04:23.fantastically, he really does, but he shouldn't have to. He's six. He
:04:23. > :04:28.takes six different tablets every single day and he has to just to
:04:28. > :04:31.get through the day. That's wrong. As the Hadfields struggle to come
:04:31. > :04:39.to terms with what's happened to their son, they have often asked if
:04:39. > :04:42.there is a link between the swine Flu vaccine and Josh's illnesses.
:04:42. > :04:47.Along with around one million other children in Britain he was given
:04:47. > :04:54.Pandemrix. And there's now evidence that that vaccine may have
:04:54. > :04:57.something to do with his illness. The evidence has come from Finland,
:04:57. > :05:02.one of the first countries to report concerns about Pandemrix.
:05:02. > :05:05.I've come to the capital city Helsinki to find out more.
:05:05. > :05:10.Public health doctors here have far better ways of keeping tabs on
:05:10. > :05:13.who's been vaccinated and any possible side effects. Sleep
:05:13. > :05:21.experts started noticing cases of narcolepsy and cataplexy in the
:05:21. > :05:29.spring of 2010. I'm meeting Dr Markku Partinen who runs a
:05:29. > :05:31.specialist sleep clinic in Helsinki. It was Dr Partinen who first
:05:31. > :05:39.noticed an unusually large number of children developing narcolepsy
:05:39. > :05:42.and cataplexy. Dr Partinen is an expert in sleep disorders, but he'd
:05:42. > :05:52.never seen so many cases of childhood narcolepsy as he did last
:05:52. > :05:53.
:05:53. > :06:03.year. Before 2010, we have had one child under 9 diagnosed in 2003 and
:06:03. > :06:05.
:06:05. > :06:14.now already in June I had five. So, one in eight years compared to five
:06:14. > :06:16.in six months. And in the following months, around 70 more cases of
:06:16. > :06:26.childhood narcolepsy came to light and Dr Partinen's researchers
:06:26. > :06:28.suspected a link with the Pandemrix vaccine. The risk of having
:06:28. > :06:35.narcolepsy was 12 times higher after having Pandemrix as compared
:06:35. > :06:44.to not having it. As the Finnish cases came to light last year, they
:06:44. > :06:47.generated media attention and strong public feeling. After we had
:06:47. > :06:51.information in June and July about the number of cases of narcolepsy
:06:51. > :06:57.in children after Pandemrix, no way I would have given it to any of my
:06:57. > :07:04.own children or the children of my friends or relatives. Because
:07:04. > :07:08.evidence was at that time so strong. For adults there is no problem, so
:07:08. > :07:11.I say to my adult friends, why don't you have it, because there is
:07:11. > :07:13.no risk, but don't give it to children. And that is exactly what
:07:13. > :07:23.the Finnish authorities thought when they saw Dr Partinen's
:07:23. > :07:28.research. The first person to see it was vaccine specialist Hannah
:07:28. > :07:31.Nohynek. We had to go out and find out if this was strictly true, then
:07:31. > :07:34.we need to stop vaccination. We need to find out and we need to
:07:34. > :07:37.alert the others. So that's what we actually did. We halted the
:07:37. > :07:40.vaccination campaign as a precautionary measure so we could
:07:40. > :07:47.find out what was truly happening and how much that was in
:07:48. > :07:49.association with the vaccine. the middle of 2010, Finland
:07:49. > :07:57.withdrew Pandemrix from its vaccination campaign and
:07:57. > :08:01.immediately made Dr Partinen's research public. Given the number
:08:01. > :08:04.of cases that we had by then it was over 80 and given the amount of
:08:04. > :08:06.media attention that they were getting and given the concern
:08:06. > :08:16.parents had, we had to be transparent and open about our
:08:16. > :08:16.
:08:16. > :08:19.results. We couldn't have kept them to ourselves only. That was an
:08:19. > :08:28.impossibility and our responsibility was to come out with
:08:28. > :08:30.results whether or not the manufacturer liked them. Hannah's
:08:30. > :08:36.team published Dr Partinen's findings and sent them to the
:08:36. > :08:39.European regulator which started an investigation. At home, the Finnish
:08:39. > :08:42.health ministry concluded that the vaccine was linked with the spread
:08:42. > :08:49.of narcolepsy in children and Health minister Paula Risikko took
:08:49. > :08:55.the problem very seriously. believe there is a link between
:08:55. > :09:00.Pandemrix vaccine and narcolepsy. We have a national working group
:09:00. > :09:02.with a number of experts who are certain there is a link.
:09:03. > :09:05.Finnish government has made sure there are support groups and
:09:05. > :09:15.specialist drugs available to help the families cope with a lifelong
:09:15. > :09:18.
:09:18. > :09:24.illness. We have decided to take these measures because the decision
:09:24. > :09:30.to acquire the vaccines was ours. Under the threat of a pandemic, and
:09:30. > :09:33.therefore we want to take responsibility for the outcome.
:09:33. > :09:38.the Finnish government is promising money too. Pledging to make sure
:09:38. > :09:40.the families are looked after for life. The final figure for
:09:40. > :09:44.compensation for children affected by narcolepsy here in Finland is
:09:44. > :09:52.yet to be agreed but what has been is the principle that there will be
:09:52. > :10:01.compensation as well as the right medical treatment and follow-up.
:10:01. > :10:03.Back In the UK though, nothing changed. In fact, even while the EU
:10:03. > :10:08.regulator investigated Pandemrix, it was being re-issued to GPs last
:10:08. > :10:11.autumn because of a shortage of the seasonal flu vaccine. Caroline
:10:11. > :10:19.Hadfield is travelling to Liverpool to meet another family coping with
:10:20. > :10:25.childhood narcolepsy. Pauline Carlton had her whole family
:10:25. > :10:29.vaccinated against swine flu in January of this year. Long after
:10:30. > :10:38.the vaccine had been withdrawn in Finland. Soon after the vaccination,
:10:38. > :10:41.her youngest son Lucas developed the same symptoms as Josh. He was a
:10:41. > :10:45.humorous little boy. He used to make me laugh so much. He had a
:10:45. > :10:53.wicked sense of humour, he was the funny one out of all my kids, the
:10:53. > :10:56.most humorous. He'd do things just to make me laugh and it's all gone.
:10:56. > :11:04.All that's gone and all that's left is this little angry, frustrated
:11:04. > :11:09.little boy and that's heartbreaking. Absolutely heartbreaking. Just like
:11:09. > :11:12.Josh, Lucas will collapse if he starts laughing or gets excited.
:11:13. > :11:17.He's been off school for the best part of a year, sometimes sleeping
:11:17. > :11:25.18 or 20 hours per day. His weight has doubled and until recently he
:11:25. > :11:27.was having regular violent tantrums. Pauline had no idea the vaccine was
:11:27. > :11:37.under investigation by the European medicines watchdog when she took
:11:37. > :11:40.her family to get vaccinated. was no warning about nothing. I
:11:40. > :11:50.didn't get told about any side effects or anything but I felt
:11:50. > :12:00.
:12:00. > :12:06.relieved that my kids weren't going But just like Caroline's son, Josh,
:12:06. > :12:10.within three weeks of the jab, Lucas was a different child. I have
:12:11. > :12:15.to medicate my son to keep him awake, I have to medicate him every
:12:15. > :12:22.day. And I have to medicate him every night to put him to sleep. It
:12:22. > :12:26.is just not right, is it, really? I thought I was protecting my child
:12:26. > :12:36.and what I have done, protecting my child, has left him with a
:12:36. > :12:37.
:12:37. > :12:42.disability for the rest of my life. The EU regulator spent almost a
:12:43. > :12:46.year a investigating Pandemrix and invest -- and eventually decided
:12:46. > :12:52.they could be a link between the vaccine and trialled could
:12:52. > :12:56.narcolepsy. It now recommends that Pandemrix is not given to people
:12:56. > :13:01.under 20 unless there is no alternative. According to UK health
:13:01. > :13:05.records, only seven children have developed narcolepsy after taking
:13:05. > :13:10.Pandemrix in the UK. Many fewer than in Finland. The Government
:13:10. > :13:16.does not accept there is a link here, and for Pauline and Caroline,
:13:16. > :13:20.this compound their problems. will not even acknowledge it and I
:13:20. > :13:26.think, hopefully, people will start looking into it and accepting
:13:26. > :13:31.responsibility somewhere along the line. That is what we ask for as a
:13:31. > :13:35.parent. Angry and frustrated, Pauline and Caroline do not trust
:13:35. > :13:41.the Government's figures and think there may be more British children
:13:41. > :13:44.waiting for a diagnosis. The thing that we are aiming for now is to
:13:44. > :13:50.get it publicised to see if there are any more children that are some
:13:50. > :13:55.-- suffering and doctors that know anything about it. It is not
:13:55. > :13:58.publicity for us, it is publicity for what has happened and so that
:13:58. > :14:04.families which have not been diagnosed and are going through
:14:04. > :14:08.this know that they are not on their own. We would have liked to
:14:08. > :14:13.put our questions to the minister responsible for vaccinations, and
:14:14. > :14:19.Milton, but unlike her Finnish counterpart, she not only refused
:14:19. > :14:29.to give an interview but also to comment. The MHRA raided, and, it
:14:29. > :14:31.
:14:31. > :14:36.Pandemrix is made by GlaxoSmithKline, one of the world's
:14:36. > :14:41.largest drugs companies, almost 100,000 employees. I have come to
:14:41. > :14:45.the company's west London offices have to meet a senior manager. I
:14:45. > :14:49.want to know if she will acknowledge the apparent links
:14:49. > :14:54.between Pandemrix and narcolepsy in Lucas, Josh and other young
:14:54. > :14:58.children. There is currently no evidence at all to indicate that
:14:58. > :15:01.there is a causal links between Pandemrix and narcolepsy. We are
:15:01. > :15:06.working very hard with the regulator authorities to understand
:15:06. > :15:11.what is happening. We are conducting a number of studies in
:15:11. > :15:14.the laboratory and with independent Sleep investigators in Quebec to
:15:14. > :15:19.understand what is happening. you saying you disagree with the
:15:19. > :15:23.Finnish Institute when they say there is a link with Pandemrix.
:15:23. > :15:28.the moment the regulator around the world believe that there is not a
:15:28. > :15:32.link between narcolepsy and Pandemrix. But at the end of the
:15:32. > :15:36.day patient safety is of utmost importance to us and we would never
:15:36. > :15:44.put out a drug or leave it out there if we believed that it was a
:15:44. > :15:48.true issue. They say regulators do not see a link but the main
:15:48. > :15:58.European regulator does. It said in July, or after up almost a year of
:15:58. > :16:02.
:16:02. > :16:07.research, that in Finland and It did also say that overall the
:16:07. > :16:12.benefits outweigh the risks but further studies are needed. This
:16:12. > :16:18.leaves Pauling, Caroline and their families angry and determined to
:16:18. > :16:22.find arts -- answers. With GlaxoSmithKline and the politicians
:16:22. > :16:27.of all the rest of it, it is not their children going through it so
:16:27. > :16:32.they do not care. It is not their children. These are children going
:16:32. > :16:39.through it, we care. If they think that happiness on the head and
:16:39. > :16:43.saying, there, there, it helped load of other people, go away. We
:16:43. > :16:53.will not be going away, we will be making a noise about this until
:16:53. > :17:00.
:17:00. > :17:04.something is done. At the end of Right now, the families are only
:17:04. > :17:08.focused on getting their children as well as they can be. However,
:17:08. > :17:15.lawyers in Finland believe they might have a good case for
:17:15. > :17:20.financial compensation in the future. I think it is irresponsible
:17:20. > :17:27.and it will definitely expose the British government to legal actions.
:17:27. > :17:32.I think they should have told to parents what had been happening
:17:32. > :17:36.elsewhere. Legal action is certainly a way off, but Caroline
:17:36. > :17:42.remains convinced that her son has had his whole life changed by
:17:42. > :17:49.Pandemrix. My son when from a healthy, energetic little boy to
:17:49. > :17:53.someone who wanted to sleep, that is not normal. No one will ever
:17:53. > :17:57.convince me that it was not to do with that vaccine.
:17:57. > :18:07.If there is something you would like us to investigate, then why
:18:07. > :18:31.
:18:31. > :18:41.Sam Smith has been investigating why a fog detection system has not
:18:41. > :18:46.been installed on the M5. Last month's horrific pile-up on
:18:46. > :18:52.the M5 was Britain's worst for 20 years. Unusually, the police were
:18:52. > :18:55.quick to suggest the cause. There was very significant smoke on the
:18:55. > :19:01.carriageway which was very distracting and difficult to drive
:19:01. > :19:09.through. The role of smoke, possibly from a nearby fireworks
:19:09. > :19:14.display, is currently under investigation. Travelling on the M5
:19:14. > :19:19.and getting up to speed and ahead of us we noticed a white wall. I
:19:19. > :19:24.turned to Dad in the cab and said, that is the thickest fog I have
:19:24. > :19:30.ever seen. I have never seen anything like that before, I have
:19:30. > :19:35.driven for many years, and driven through fog before. But I have
:19:35. > :19:41.never seen anything as sudden as this. There was no fog previously,
:19:41. > :19:45.just suddenly hitting a wall of extremely impenetrable fog. Inside
:19:45. > :19:50.Out has learned that despite their apparent focus on smoke, the police
:19:50. > :19:55.are also investigating the possible role of fog. Tonight, we can reveal
:19:55. > :19:59.that the part of the M5 where so many died is known by the
:19:59. > :20:06.authorities to be a highly fog prone stretch of the motorway. So
:20:06. > :20:11.bad, in fact, that only last two consultants recommended up grading
:20:11. > :20:15.the fog warning system there. A recommendation on which there are
:20:15. > :20:21.apparently no plans to act. The current warning system is outdated,
:20:21. > :20:25.its electronic boards can signal fog but only if staff at the
:20:26. > :20:30.Highways Agency activate them and they rely on people on the ground,
:20:30. > :20:38.like the police, reporting a problem. On that night, no one did,
:20:38. > :20:42.so fog was not signed. Fog has always been a danger on
:20:42. > :20:48.Britain's roads and early efforts to protect motorists ranged from
:20:48. > :20:53.the basic to the bizarre. Motorway police have been armed with a ray
:20:53. > :21:00.guns. They are harmless... Because they relied on human intervention,
:21:00. > :21:05.the systems could be hit and miss. A motorway copper shows how good he
:21:05. > :21:10.is on the move would be new space- age lamplight of. It took nine
:21:10. > :21:15.deaths in the 80s for things to change. The coroner's court heard
:21:15. > :21:22.how police had no warning of a sudden blanket of fog which
:21:22. > :21:27.descended on the motorway. The M25 pile-up was at the time Britain's
:21:27. > :21:31.worst. Questions were asked about the fog warning system. It was the
:21:31. > :21:37.job of the police to switch the lights on, but they had not. It
:21:37. > :21:41.must be remembered that a policeman has to physically come down here
:21:41. > :21:46.himself and by the use an electronic device such as this one,
:21:46. > :21:49.orate he, to turn those lights on. In spite of the fact that there is
:21:49. > :21:56.a fully operational motorway control centre a few miles away
:21:56. > :22:04.from here, this, Britain's most modern motorway, is still manually
:22:04. > :22:10.operated. Signs which were automatically triggered by a
:22:10. > :22:17.roadside visibility sensors were introduced. It worked, motorists
:22:17. > :22:21.heeded the signs and slowed down. In 1991, tragedy struck again.
:22:21. > :22:30.These -- the smoke from the crash lingered over the scene for hours.
:22:30. > :22:38.50 yards of twisted and burnt metal strewn across the London-bound
:22:38. > :22:43.carriageway. What did Bob, a survivor of the crash, think when
:22:43. > :22:52.you heard about last month's pile up? Not again. Are people ever
:22:52. > :22:56.going to learn to match you had the M5, the M42 a few years ago as well,
:22:56. > :23:00.it seems to be forgotten very quickly, it just happens again and
:23:00. > :23:04.there is an outcry and then a few years down the line it happens
:23:04. > :23:09.again. Then it all rolls back. There was this one, there was that
:23:09. > :23:17.one, but it still seems to keep happening. There has got to be some
:23:17. > :23:21.way of giving Prix warnings for fog like it, I do not know the answer
:23:21. > :23:27.personally, but there are obviously brainy people around who should
:23:27. > :23:34.have answers. And indeed there are, I travelled to meet Hans Remain who
:23:34. > :23:40.helped to install an automatic fog detection system in Holland.
:23:40. > :23:45.1990 there was a very severe accident during very dense fog.
:23:45. > :23:52.There were many deaths, many casualties except for. This caused
:23:53. > :23:58.the Ministry of Transport to ask us to implement a fog warning project
:23:58. > :24:03.to detect dense fog and won the drivers' with speed limits.
:24:03. > :24:09.sensors are similar to those on the M25. They detect and warned not
:24:09. > :24:14.only of fog but anything that affects his ability. And according
:24:14. > :24:21.to Hans Remain, they rarely get it wrong. This is completely automatic,
:24:21. > :24:24.there is no human being involved? No, it is better not to, it is
:24:24. > :24:29.better not to lay the responsibility with human beings in
:24:29. > :24:35.these cases. It is so unexpected, you cannot give this task to a
:24:35. > :24:38.human being. So, a totally automated system, built from the
:24:38. > :24:43.ground up in just six months, designed to make a Dutch motorway
:24:44. > :24:49.safer. But does it work? I went to meet the man who spent two years
:24:49. > :24:55.evaluating it. The system did help people in reducing their speed
:24:55. > :25:04.further than they do just too bad visibility situations. You get
:25:04. > :25:11.fewer accidents? After the system was installed, fog accidents ceased
:25:11. > :25:19.to to happen. How important is it that drivers believe the signs they
:25:19. > :25:23.are seeing? Trust is important. As soon as you have fog the system
:25:23. > :25:29.once the people and that means that if you have such a warning them
:25:29. > :25:34.quite soon you will be confronted with fog. It means there is very
:25:34. > :25:39.close correspondence between the warning and the fog itself, trust
:25:39. > :25:43.will automatically develop. Back then, the cost of the technology
:25:43. > :25:47.was high, nearly a quarter of a million pounds per mile. That did
:25:47. > :25:51.not put the Government off. The political will to install this
:25:51. > :25:57.expensive but apparently effective technology came about because
:25:57. > :26:01.everybody knew that a maze it -- major cause of the accident was fog.
:26:01. > :26:08.But back in the UK with the M5 pile up, things are not quite so clear
:26:08. > :26:13.cut. Here it is not just for but smoke
:26:13. > :26:20.that is under investigation. Experts say that pollutants are
:26:20. > :26:24.like smoke can make fog worst. consists of droplets of water
:26:24. > :26:28.suspended in the air which scatter the light and reduces visibility.
:26:28. > :26:31.When the droplets form in the atmosphere, they have to form on a
:26:31. > :26:35.particle of pollution. There is always some pollution in the
:26:36. > :26:40.atmosphere. If there is a lot of pollution, in general there will be
:26:40. > :26:50.more droplets formed and more scattering, so the fog will appear
:26:50. > :26:51.
:26:51. > :26:55.denser. Crucially, whether the M5 crash happened it in a fog or smoke,
:26:55. > :26:59.or a sensor at the crash site would have detected reduced visibility.
:26:59. > :27:04.But there are no senses at the site or in the south-west. They have
:27:04. > :27:12.been installed in the north-west, as part of an automated system. The
:27:12. > :27:17.cost? �180,000. We obtained a consultant's report from last year
:27:17. > :27:21.which identified the accident spot as at high risk from fog. It
:27:21. > :27:26.recommended installing an automated fog warning system. We asked the
:27:26. > :27:29.agency whether it had any plans to do so. It said it did not and it
:27:29. > :27:33.would only look at safety improvements once the results of
:27:33. > :27:41.the police investigation were known. But some of those involved in that
:27:41. > :27:48.terrible accident would like accent that smack action now. -- would
:27:48. > :27:52.like action now. The earliest indication you can give people to
:27:52. > :27:57.slowdown will be beneficial. Even 10 miles an hour or 15 miles an
:27:57. > :28:02.hour would have made those fatal crashes near fatal and given people
:28:02. > :28:06.half a chance. I think it would be a phenomenal idea. And why not? If
:28:06. > :28:12.that is something that can be provided or a lesson to be learned
:28:12. > :28:18.then a great idea. That is it for this edition of
:28:18. > :28:23.Inside Out West. You can keep in touch with what we are up to one
:28:23. > :28:27.Facebook and Twitter. Next week we will have a special edition of the
:28:27. > :28:31.programme looking back at the April riots in the Bristol area of Stokes
:28:31. > :28:37.Croft. A Tesco Express store found itself at the centre of the trouble.