Inside Out West and North-West BBC1 Monday 12th December 2011

We have had lots, as in hundreds, of concerned people contacting the charity after seeing the programme above either in the West or on I player. We as a charity are disappointed at the way the BBC have reported this story; in trying to make a complex story simple for good viewing, it missed out or did not fully explain the situation and left a small charity to pick up the pieces.
From the emails yesterday we have drawn together a list of the seven most asked questions and provide, what we think, are honest answers. We hope this helps. If you have any other questions please do contact the charity in the usual way.

1. Is Pandemrix Vaccine only for Children?
No. Many people asked this question because the report started by saying it was a vaccine designed to protect children from H1N1. Pandemrix is a vaccine that was designed to protect everyone against H1N1 and was given to far more adults than children. If you were given Pandemrix and are concerned you may have been given children’s vaccine don’t be!

2. Is Pandemrix safe?
Pandemrix provided good levels of immunity to H1N1 influenza. All drugs carry a risk but with Pandemrix that risk was minimal. In 2010 a number of countries reported seeing a greater number of children with Narcolepsy after having Pandemrix. The European Union asked its medical group, the EMA to carry out an investigation. They reported in April 2011 that an increased risk in children had been found and in the final report of the EMA in July 2011 confirmed the association between Pandemrix and childhood Narcolepsy. To date no association between adult Narcolepsy and Pandemrix has been proved; the issue arose in children and adolescents.

3. My child sleeps a lot and had Pandemrix does he have Narcolepsy?
Probably not. The increase in risk from giving your children Pandemrix and them developing Narcolepsy seems to vary from country to country. We don’t know why that might be. Finland reported a 13 fold increase while Sweden was much closer to 6 fold. Our expert advisors suggest that the numbers in the UK might reach an 8 fold increase. This sounds a lot but we are talking about 1,000,000 doses of Pandemrix given to children and adolescents. From that we expect to find an extra 80 children who develop Narcolepsy; that is a 0.0008% risk of developing narcolepsy.
For those families where Narcolepsy has been diagnosed it is a tragedy. Narcolepsy in children is a bewildering experience and our hearts and support must and does go out to them.
However the chances of your child developing Narcolepsy are very small. If you are really worried do arrange to see your GP. They will carry out a range of tests to discount any and all childhood conditions. Sleepiness in a child and a change of temperament could indicate many illnesses, some of them far worse than Narcolepsy, so they need to be ruled out first. You might mention to your GP that tests carried out on those children who had Pandemrix and developed Narcolepsy show a specific marker that might suggest you have a predisposition to sleep conditions; the marker is HLA-DQB1*0602. After discounting other conditions a simple blood test will show if your child has this marker.

4. Why aren’t the Government providing Compensation?
This was one of the most asked questions as the programme suggested that compensation was not available. This is absolutely not the case. The UK Government through the Department of Work and Pensions operate a Vaccine Damage Compensation Scheme. In fact the UK was the first European Government to actually offer a level of compensation to those who had developed medical conditions after taking Pandemrix.
While Finland is still talking about it and expect to have some rules out this year, the VDWP has been running for almost a year.
In fact we think the Government deserves congratulations for moving so quickly; and we never thought we would write that line!
Problems with compensation do still exist; like most European countries the scheme is only available to applicants who had the vaccine before August 2010. That is because H1N1 vaccines should not have been used after that date. However we have now informed the DWP that doses of Pandemrix were used up to March 2011 and we are in discussion with them about increasing the cut off date.

5. Are the Government covering up the scale of the problem?
No. We expect to see an extra 80 cases of Narcolepsy and so far we believe 7 have been identified. In children (and adults too for that matter) Narcolepsy is a difficult disease to diagnose; many of the symptoms could relate to other conditions and they have to be discounted first. Also Narcolepsy is a spectrum disorder and it could well be that the condition has not developed enough in the children to show as a problem yet.
An independent scheme where doctors (and members of the public) can register the vaccine incidents exists and is run by the MHRA. The “yellow card” scheme has a good reputation and we are convinced that it is accurately reporting events.

6. Should I have my child vaccinated in future?
Yes. Vaccinations have saved millions of lives and the benefits far outweigh the risks. If you have a history of sleep disorders in the family you might want to discuss with your GP the options of using specific vaccines or having your children tested for the HLA subtype but the charity remains strongly supportive of the immunisation programme.

7. Is medical support available for the children who have Pandemrix Narcolepsy?
Second most asked question and certainly the report suggested that support was not as good as in Finland. Medical support is available for the Pandemrix children and if this support had been replicated throughout the Narcolepsy community we would have a lot less work to do. Two out of the seven are on xyrem (imagine if we had 30% of adults on that drug!) and the other five are on medication that has stabilised their condition. Once again we find it very hard to criticise the effort of the PCTs who seem to be providing all the help they can.