to expect more parents to be outraged?

[MouseSquirrelMum]

Hi
I'm confused.

A vaccine has been licensed for use against a childhood disease that strikes quickly, is hard to diagnose, kills, maims and permanently damages babies and children (bacterial meningitis)- but it's not being made available through the nhs because it may not be cost effective.

Why isn't everyone talking about it, demanding to be given the right to be able to choose?

Do i just feel outraged because my dd had it, no rash, only ok because the 3rd doctor we saw decided to do tests (on a hunch) - and the same for others who have encountered it and lost children?

There's info and a petition on the board for anyone that does feel they want the choice.

Please help me understand, AIBU?
Thanks

[caroldecker]

You have the right to choose, go privately and pay.
There are lots of things the NHS would like to fund and, in order to ensure best use of resources, NICE decides where the best value for money is.

[MouseSquirrelMum]

Thanks caroldecker. It's a good point, there will be other people with other priorities and nhs funding has to somehow go round. Lots of people won't be able to choose the private option though and children will die or be left with horrendous problems, surely parents must be upset?

[countingmyblessings]

YANBU

[OutragedFromLeeds]

If the NHS can't afford it, they can't afford it. It's not a bottomless pot. What would you like them to drop in order to offer the vaccine?

How much does it cost to get it privately?

[WestieMamma]

The article I read on this says that there are lots of gaps in the science surrounding the effectiveness of the vaccination and that is why they decided it wasn't cost effective. It also said that so far every country has rejected the vaccine on the same basis.

Therefore I think YABU

[MouseSquirrelMum]

Hi outraged, great name!
I don't think anyone knows yet what it will cost privately, the meningitis trust website just says it may be available privately by the autumn. I just checked a random ad on the Internet for private mmr, which was £45 for each of 3 doses. No idea how men b will compare

[MouseSquirrelMum]

Hi westiemamma, I haven't heard that. Can you point me to an article, it would be interesting? Thanks

[WestieMamma]

'Tests have suggested the vaccine is effective against 73% of the different strains of the disease. It was licensed for use in Europe in January 2013.

However, there are questions about the effectiveness as very large trials would be needed to show how it affects the number of cases or how it would control the spread of the bacterium. So far no country has introduced the vaccine.'

...

'Prof David Salisbury, the director of immunisation at the Department of Health, said: "This is a very difficult situation where we have a new vaccine against meningitis B but we lack important evidence.

"We need to know how well it will protect, how long it will protect and if it will stop the bacteria from spreading from person to person.

"We need to work with the scientific community and the manufacturer to find ways to resolve these uncertainties so that we can come to a clear answer."'

www.bbc.co.uk/news/health-23422973

[MouseSquirrelMum]

Thanks westiemamma. From that article, it's clearly hard for them to know what to do, there seem to be different views and maybe no country wants to go first. The side effects/ risks seem quite limited so i guess it is coming down to not being able to accurately estimate cost effectiveness.

[girliefriend]

yanbu

[MouseSquirrelMum]

Thanks everyone for your help.
With all the very valid points people have answered with tonight, i'm still surprised not to hear more people talking about this and being concerned in different ways - I don't hear much at all on it.
I wonder if it's partly that people just don't know that much about what the disease does or how hard it is to spot, so perhaps it's not a problem people relate to? ( I don't mean people on this thread, I just mean in general)
Until dd had it, I knew to look for spots ( which is not right) and vaguely knew to rush to hospital if I saw them. I didn't expect the horrible deterioration in a single day, or all the awful possible effects, or such an urgent need to do the lumbar puncture test that the doctor said no time for an anaesthetic, we'll have to hold her down and best go outside so you don't hear the screams.
Probably I should talk about it to people more, but it's not a nice memory.

[trinners88]

YANBU. I haven't heard about other countries also refusing to roll it out yet. There seems to be some gaps in knowledge regarding this vaccine - like how long it lasts (for example) and whether it prevents the spread of the Men B bug but NICE do seem to be considering giving it to teenagers. The various Meningitis Charities are furious about this decision although it is not final. That's why the charities are challenging the decision.
It is a relatively new vaccine so I would be a bit anxious about that issue.

[MrsTerryPratchett]

People may not be talking about it because they read about it, agreed with the decision and thought no more about it. That's what I did.

More certainly needs to be done to educate parents generally about what to worry about.

[MrsTerryPratchett]

In terms of symptoms, I mean.

[noblegiraffe]

Chickenpox can kill but the vaccine isn't on the schedule either. They're just bringing in rotavirus vaccine and introducing a booster for something else (another meningitis? I think the nurse mentioned it at my DDs vaccinations) so clearly they do consider the evidence and introduce new vaccines where they think it will be cost effective. I think if they haven't brought in this one, they must have good reason.