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Immunisation

What type of information do parents want?

When being informed about their child's immunisations, parents would like information that is balanced, unbiased and presents both sides of the argument. Many believed that the information currently available was biased towards either a pro or anti-immunisation perspective and parents desperately wanted objective information to help them make the right choice for their child. 
 

Objective information giving both the advantages and disadvantages of immunisation is needed.

Objective information giving both the advantages and disadvantages of immunisation is needed.

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Yes, I think objective information, I would like to see there, really objective information, not coloured in any sense, really giving both advantages and disadvantages. Statistics, as much as information is possible, statistics, both sides of information, pros and cons, really pros and cons about the MMR. But really, really objective. That, that, that I really would like to see. That, that's the only thing in my opinion that really helps parents. Anything else is unfair I think, because anything else is just scaremongering, one way or the other. Because at the end of the day, the day it's both scaremongering. You know, people say, 'No, don't do the MMR, you don't need MMR, you don't need any vaccination because vaccination is this and that'. It, it's scaremongering. And there's so much information out there that's not true.
 

Parents wanted more detailed information about the risks and side effects of the immunisations. Many would like more information on the chances and probabilities of side effects/reactions occurring from the vaccines and also more data on the likelihood of complications or symptoms occurring if their child caught any of the diseases. Information in the United Kingdom on adverse (bad) vaccine reactions is not collected reliably and therefore cannot be assessed accurately (World Health Organisation). However, the system used to collect adverse vaccine reactions, known as the 'yellow card' scheme, is one of the better ones in the world and it does occasionally lead to the withdrawal of products.

Some parents also wanted information to be more available on the ingredients of the vaccines. Every parent should have access to a health professional to chat about the risks of catching the diseases and the benefits and potential risks of immunisation for their own child, and the population in general. More comprehensive information, including the vaccine product insert sheets, should be given to help parents make their decision. Health professionals should assess contraindications in relation to the individual child.

Information that failed to provide data on the risks or potential reactions from the vaccines alienated parents and damaged their trust in the reliability of the information being given.  

The overwhelming majority of parents believe in immunisation for their children. We have however included here the views of a few parents who do not believe immunisation is right for their own child based on their personal beliefs. Their views represent a small proportion of the population.

 

Parents should have access to the vaccine product insert sheets listing the side effects and...

Parents should have access to the vaccine product insert sheets listing the side effects and...

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Mother' And we're not given the full story about what the possible risks and side effects are. Now, you take any drug, any over the counter drugs, and every single packet has in it a little folded up piece of paper, in very small print, but if you read them, they can actually be quite scary things. You know, you can read drugs that, this carries risk of it for thrombosis and this carries risk of this and everything, all the information is published and written on these inserts, even though you accept that most of the time, probably, the chances of that happening are is very remote. Now that is not the case with the vaccine, you are not given the package insert. You're not given detailed information to read because I really believe if we were, parents would really think a lot more seriously or take... that's maybe the' parents would, it would really give you pause for thought. And we were certainly not given information, in that order.

 

More information should be available on the side effects of immunisations.

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More information should be available on the side effects of immunisations.

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I now realise that although we had quite a lot of information at our fingertips, we didn't really, we didn't really have quite enough. Again it was terribly difficult, even the poor chemist couldn't get hold of the, the side effects leaflet from the drug company because he, he knew our daughter and was appalled so he was trying to help us but he couldn't get hold of a copy. But even, even the admitted side effects there's a rider to every one of them, 'However, we don't believe our drug causes this' of course they, they have to put that so the whole thing is just a bizarre, it's like a mass of cotton wool, you enter it and then you get nowhere because you're, everything's muffled it, it's just. There seems to be no clear answers.

 

Wanted statistical information on the chances of getting a reaction to the vaccine as detailed by...

Wanted statistical information on the chances of getting a reaction to the vaccine as detailed by...

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It was just an overwhelming thing of, you know, 'What are the odds of my child, you know, developing autism or a, you know, sort of stomach issue, you know, sort of some serious kind afterwards?' you know. And you, you sort of really wanted statistical evidence. And of course there wasn't, there was no, because no link had been confirmed, it was just, you know, a kind of possible link. There was no statistical evidence around. 

So you just got this massive panic without any, you know, any sort of real hard evidence one way or the other. Because you can't disprove something either until it's been, been looked into. And I think it was that whole fear of possibility without kind of any, any concrete evidence. And you really just wanted someone to sit down and say, 'All right, there's...' you know, either, you know, 'There's 100 per cent chance that there's no link whatsoever' or, 'There is a link but it's a 98 per cent chance that you know, that they'll be fine and a 2 per cent chance they'll develop autism'. And, you know, '70 per cent chance that if they don't have a vaccination they'll get German measles'. So you could at least weigh up what the, you know, what your odds were to make a decision. But there was just nothing there at all. And I think that's what was most worrying. Because if you're, if you're presented with, basically with enough facts to be able to make a decision on, you at least feel that you've done it in a kind of best-chance scenario way. Whereas you just felt you were kind of, either way you were, you know, as I, I said at the beginning, about to endanger your child's life. 

So the questions really were just based around, 'If there is a link, how high, you know, what chance is there? How many children have been vaccinated entirely safely as opposed to any possible children that may have developed effects, side effects afterwards?' I think it was based more around that, trying to establish some kind of reassurance that statistically it was likely to be fine, and not have any problems with it.

When discussing their child's immunisations with a health professional, many parents wanted the opportunity to discuss their concerns and not to feel forced into immunising or to feel that their decision had already been made. 

 

Assumptions shouldn't be made that parents will immunise their children and more information...

Assumptions shouldn't be made that parents will immunise their children and more information...

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When I went to have my first set of jabs for the baby, you, we were just given them, you know, you were saying this is your DTP whatever, no-one really tells you what they're for, it's pretty much left up to you to go, go away and find out what these things are for. I don't think there's as much information out there about jabs for small children as, as there should be. And it's more presumed that you will go ahead with them whatever. It would, it would be nice to be given the choice.

And what information do you think you'd have wanted?

I would've wanted to know what the downsides would've been if I hadn't chosen to have the jabs. I would want to know about all the diseases a bit more in-depth that I'm immunising against. I would liked to have known if there was other options available to me if I had to have them there and then, or if I could choose to have them separately? Yeah, things, things like that. There was really no, to be honest, there was really no information given at all, it was a presumption that you would have, have the jabs. And okay yes, I understand that people are, these jabs are being given because a lot of research has been done and it, they've been proven to be the best way forward, but it's always nice to be spoken to as, as a human being and being told why, the reasons why and why it doesn't make sense not to do it.

Some would like information leaflets to be sent with the letter telling them of the date that their child's immunisation is due. Others preferred a conversation with a health professional and then leaflets to be given for parents to take away to help them make their decision. One mother thought that it was the responsibility of health professionals to make sure that parents are given comprehensive information rather than them finding it from other sources, which may be providing inaccurate information.  

 

A chat with a health professional with written information to take away is a better way to get...

A chat with a health professional with written information to take away is a better way to get...

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But actually pressurising parents, I don't think that's right, pressurising parents to have the immunisations. I think it's important to realise that parents do have that choice. If they don't want their baby to be immunised, you know, they have that choice. But you, as a health professional you should try your best to give them the information, and, and they know the consequences of not having that immunisation. I think that's really important. As I said before some health profess-, I mean professionals, they might not, they just give you the leaflet and not talk about it. But it's important for professionals to actually talk to the parents and tell them, you know, why it's important as well, and the consequences of not having these immunisations as well. I think it's really important, not just to think about all the what's it called the high level, getting the immunisations up, levels up. Because I mean you have to think of it as, you know, they're parents, you know, they're going to make their own decisions. You can't really make any decision for them or you can't really force them into something, which they're not happy about.

 

A comprehensive information pack needs to be sent with the appointment card.

A comprehensive information pack needs to be sent with the appointment card.

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Yes, actually I think, for, for things that have been controversial like the MMR, I think it would be worthwhile having something sent out to parents. I know these, there probably are leaflets that are available from practices and everything, but people don't always see them or don't always pick things up or whatever. It might be actually quite useful to get something sent with the appointment card, just to say, 'Here are some useful, you know, Internet links or, you know, reference points from the library or whatever that, that will help you make your decision' or even just a few facts saying possibly, if it's possible, I don't know, if it's government funded it might not be, but weighing up the pros and cons of, of it as, you know, as, as investigated in the past couple of years. I think that would help a lot of people, because as I say I think sometimes people just base things on, 'Oh, the newspaper said it was bad so therefore we won't do it'.  

 

Parents need to be given comprehensive information from health professionals.

Parents need to be given comprehensive information from health professionals.

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There are lots and lots of people who have never really been educated about this. And why should they be? This is a matter of health, public health. So it's only those who are in this field who know a lot more about it. But the majority of people just know what they read on the papers or, or are told on TV, which is not always the right amount of information and is never all the information available. Yes, you can find it in the Internet, but that is also I think limited to a certain type of population. Not everybody goes and makes an Internet search when they want to know something. So I think the, the main responsibility is for the health personnel, because these are the people who are absolutely obliged to provide you with the right information. It's their job to do it. And it's their job to help you to reach that decision. Even if, if you have received all the information available, with all your questions addressed, and still you've decided you don't want it, fine, you are free in this country to decline the, the vaccine. But you shouldn't decline it because you haven't been given the, the right information and you have still some vague ideas and some obscure fears about vaccines.

Some parents wanted more information about the diseases that the vaccines provide protection from.    

Parents wanted to know more about the reasons for the changes that have been made to the immunisation programme over the years. For example:

  • what led the government to decide that it was necessary to immunise children?
  • why did they change to a combined MMR vaccine from the single measles mumps and rubella vaccines?
  • why did they change from the DTP (3 in 1) to the DTaP/IPV/Hib (5 in 1)?
  • what are the implications of these changes?

One mother had found it useful to be told about MMR on a larger scale, that it had been used in other countries for many years without any ill effects. 

 

More information should be given about the reasons that lie behind the changes that have been...

More information should be given about the reasons that lie behind the changes that have been...

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And also why they feel, why the government feels it's necessary. Like what led to them vaccinating. Because I think, I think that's one of the things also that people just kind of go, 'Well, measles was never a problem, or, you know, whatever. Why, why on earth are we all suddenly having to be vaccinated?' Because I felt like that about mumps. I was a bit, well, I had mumps, it wasn't that big a, big a deal, you know. And sort of, 'Why, you know, the re-, what led to them feeling that it was necessary to vaccinate that, against?' I think, because I think that as a parent you can see the bigger picture of, you know, and how your child's going to fit in as part of the whole, whole unit. And I think then it helps with people's sense of social responsibility. If they realise what the, you know, the possibility of if you don't have vaccinations, it's much, you know, you're much more likely to kind of go through with having it done probably.

And it's worth kind of, you know, making that point, not in a kind of bullying way, but just that realistically statistically this is the reality of the situation here. And the situation if you don't, you know, if a certain percentage don't have it done, that, you know, that there are, there is a reason why. It's not kind of done, done to annoy people, which, you know, the press around, it's been so bad lately that it's just kind of just like the government saying, 'You've got to have this done' and, and, you know, creating a system which is in GPs' surgeries that will basically make it impossible for people not to do it. Whereas I think if you just said to people on a reasonable basis, 'This is why it's being done'. And I don't remember ever reading anything that just went through kind of what the steps were leading to them doing the triple jab, and why they, you know, they made those decisions and what the implications were for it.

 

Parents need more information when changes are made to vaccines.

Parents need more information when changes are made to vaccines.

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Yes, I'd like to have been told a bit more. 'Your child' yes, absolutely, that, that, you know, 'We, we've discarded the 3-in-1. We're now bringing in a new'' I mean, I thought for example that, that she would probably have the 3-in-1, and then maybe in a few months time the 5-in-1 would be brought out for new babies. But I didn't realise that it would all be mixed. But apparently there's, there's not a problem with it. It's all been, you know, but I didn't know that at the time. And then I was sitting in the surgery with my child on my knee. 'Oh, she's having the new jab'. And I did actually think, 'Well, hang on a minute. Is she, you know? How long has it been around? A couple of weeks?' And, and she said that they'd had to discard all the old batches. And then you think, 'Okay. What's wrong with the old batches that she's just had?' [laugh] So definite, definitely more information on it, absolutely.

Information being given to parents on possible reactions varied across the country. Some parents wanted to be informed more clearly about the possible reactions to expect after their child's immunisations, including how ill their child could be, for how long and whether reactions could differ according to each set of immunisations. Some also wanted more information about what they should do if a reaction occurred. One mother would have found it useful to be told that she could give paracetamol to her child after his first immunisation. Giving paracetamol after immunisations is now not recommended for most injections, but the Men B vaccination (at 2 months, 4 months and 12 months) can cause high fevers so parents are now advised to:
 
“Administer 2.5ml liquid paracetamol at the time or shortly after the vaccine and repeat for 2 further doses 4–6h later.” - GP Update Handbook Spring 2014.
 
Other parents felt that the standard information leaflets provided had been given enough information for their needs.

 

She read the leaflets and found that they provided answers to the things she had been worried about.

She read the leaflets and found that they provided answers to the things she had been worried about.

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To be honest I felt quite happy that, that it was the right thing to do. And I did get, before each of them were immunised, I got sent I suppose pretty standard leaflets, information about, about immunisation, and I was happy with what, what was on there, those. And I think the information that I needed to know was, 'What side effects would they have?' Because obviously as I say, you know, I said I was quite happy for them to be immunised, which I was, but I'm also aware that they were going to have side effects in terms of temperatures and perhaps feeling a bit unwell. And I think, you know, giving any drug of any description you're going to have something. And I just wanted to know what they would be and how I could deal with those really. And that, and that was all, that was all dealt with in the, the information I received through the post.
 

Last reviewed October 2015.
Last updated October 2015.

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