Other information sources
It is absolutely right and normal that parents are concerned about the health of their children and it is important that parents seek reliable scientific evidence on which to base their decisions and there is now a mass of this information available.
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.
Every parent should have access to a trained health professional to chat about the risks of catching the diseases and about the benefits and potential risks of immunisation for their own child, and the population in general. Parents can talk to their GP, health visitor or practice nurse. There is also an immunisation advisor in each local health protection unit, whom parents can talk to about their child's immunisations. (See Public Health England's website for details about local contacts).
Some parents felt the decisions around having their child immunised, especially the MMR immunisation was so important, that they believed the onus was on them to gather their own information to fully understand the potential dangers to their child. Generally these parents had decided that the information given by members of their general practice team might not be fully independent of pressures - financial, bureaucratic or practical. (See 'Information from health professionals'.)
Having said this, most admitted that the task they had set themselves was not an easy one.
Some parents used the Internet to find information on immunisations, to help them make a decision, to research single vaccines or to get information to check that the reactions that their child had were normal. Discussions between parents on parenting web sites had been a useful source of information for some mothers. Others had used the Internet to access scientific papers on immunisation research.
Using the Internet for information on MMR did have its problems however; it was easy to be overwhelmed with a considerable amount of information, which was often conflicting and controversial, and it was difficult to know which sources were reliable. One mother suggested that going to the sites on the Internet where there were stories of disasters attributed to immunisation was likely to frighten people without providing the appropriate information about the likelihood of such things occurring.
- At time of interview' married, one daughter, aged 15 months. Parent's occupation' Mother- Doctor, Father- Software manager. Ethnic background' Latin American (Mother), Father (White-British).
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 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 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 vaccine. But you shouldn't decline it because you haven't been given the right information and you have still some vague ideas and some obscure fears about vaccines.
Some parents said that the more time they had spent researching the subject, the easier it was to identify reliable sources.
- At time of interview' married, two children, aged 4.5 years (son) and 2 years (daughter). Both children are lactose intolerant. Parent's occupation' Mother- Accountant, Father- Home Dad. Ethnic background' White-British.
Mother' Subsequent to that, as the lactose-intolerant problem continued and I guess my thirst for information continued I did more research. And we had concerns about our son's gut, particularly from the damage that we believe was done initially when he was still having lactose before we realised he was lactose-intolerant. And that's really where I came across the links with the bowel problems and certainly the triple jab. And I had done hours and hours of research. I think initially, the first time I found those websites and started reading, I think I was up until two in the morning, just reading and reading and reading. And suddenly a lot of things started to fall into place that.
But [my husband] was quite rightly a bit sceptical at that point, and so we basically then went further and thought, 'Well, we're not going to just take one data point on this, we need to find out more information ourselves'. So we went through, well, I certainly spent a lot of time researching the actual vaccinations themselves, the diseases they're meant to protect, the comparison between the triple jab or having singles, and the benefits and otherwise of that. And obviously we were looking at it specifically from our child's medical point of view. So that was where we started really. It took a long time, I spent a lot of time researching it to make sure that I felt I was informed, and that's my whole point.
And was this largely on the Internet?
It was all on the Internet, yes.
And you said you felt sceptical at the beginning, at that stage, what were you feeling sceptical about?
Father' Partly it was because the source of information was the Internet and there's no interlocks onto what information is put on the Internet. It could be any group or cult or anybody can put anything up there. So it was really double-checking the information that's on there and going to various sources. And also going to known good sources, essentially, independent scientific assessments, and just double-checking what they say and based on the information they've got.
Mother' I think it was, the more I read the more I was able to differentiate between scaremongering and sensible editorials if you like. And ultimately it just came down to the volume of research we did, from all around the world not just the UK. We went to, you know, the beauty of the Internet is obviously you can look at other countries. And obviously this wasn't just a vaccination, pure vaccination issue. At the same time we were looking in to bowel issues and digestive problems. So we had data points from a lot of different sources, not just the vaccination. And I think that helped us, because understanding some of the biomedical issues I think helped us make that decision and feel when we had accurate information or not. Ultimately I think there is still a lot of scepticism out there about the whole bowel issue. But we have a son with bowel problems. It's not caused by MMR but I think is a contraindication to him having it. And that was how we came to that conclusion.
- At time of interview' married, two children, aged 6 years (daughter), 4 years (son). Parent's occupation' Mother- Environmental Consultant, Father- Farmer. Ethnic background' White-British.
Mother' Well it was quite difficult because if you're not careful you end up with reams and reams of paper and it just becomes too much to try and trawl your way through it which we did at one time. But we did actually put in a search code of immunisation and then reduce it down to things like MMR and got some useful papers. But I think more useful to us was talking to other parents who hadn't had their children immunised and the reasons being. Talking to medical advisors and just really reading books was certainly more useful than the Internet. But I think the Internet if you're more at ease with it can still be a useful tool, but if you're not careful you'll just end up being completely overcome with information.
Father' A lot of the information's from America isn't it?
Mother' Yeah, there's a lot of information from America and there's also several books that have been written in America because they actually have more injections in America then we do in this country and so there's certainly the pros and cons as to whether to have your children immunised, there's lots of literature from America. But I think in the end it, if you're not careful you'll never make a decision because there's so much information and you have to sort of decide what you think is best and that's what parents have to do regarding everything really. And you have to weigh up the risk factor.
- At time of interview' one daughter, aged 15 months.
But NHS Direct, okay, I'm on the phone to a government body and I'm asking them and I'm getting the same response. I'm asking, 'Well, who else can, where can I go to find alternatives?' 'Well, like I say, for the MMR you can...'. I'm like, 'You're not even answering my question'. That was incredibly irritating. You hang up the phone and you're back to square one. And all I can say is you're resorted back to finding your own information on the Internet.
Which also, to the point which is making doctors and anything the government can supply you with, if you want something different, is redundant. And then it's a guess as to, 'Okay, well, which one am I going to take her to?' I don't know whether one is better than another, if one is just some kind of room in a basement of somewhere or whether it's actually a professional doctor's clinic. You don't go on any websites that, I did come across one site I think from memory, but I had to pay '80 to actually get information off it. And I was thinking like, 'Fair enough, fine'. And then the closing tag, just to make the parents feel guilty, 'Yes, we understand, you have to pay for this, but you can't put a price on your child's health'. And I'm thinking, 'Well, thanks for that. That's really helpful'.
So I just kept on going to find information. And I eventually found places that could do, it but again it's finding information about those people and if they're, what the service is like. Hence why I saw Harley Street, thinking, 'Well, okay, you can have really shoddy doctors on Harley Street but, hey, on the whole they're going to be okay'. As opposed to someone suggesting, another website suggesting East Finchley, thinking, 'Well, Harley Street is a street of doctors. I think I'd better go there'. So it is difficult.
A few parents who accepted that reports in newspapers were probably scare mongering and exaggerated, felt that the best way to get information was to look at the original research papers of the scientific studies. But as with other information sources, it was also important to look for any conflicts of interest, for example, papers published by researchers attached to the drug company, which produced a particular vaccine.
Some admitted that research papers were difficult to read. See 'Resources section - Medical Research on MMR, autism and bowel disease, and other safety issues' which gives a short summary of each of the research papers and the key findings. Not all parents felt they needed this amount of information and often talking to a trained health professional provided the reassurance parents needed to make a decision. (See 'Information from health professionals'.)
- At time of interview' married, two children, aged 22 months (daughter) and 4 months (son). Autistic Spectrum Disorder in husband's family. Parent's occupation' Mother- Vet, Father- Letter Cutter. Ethnic background' White-British.
Medical journal, yeah medical papers really not from the newspapers, I don't think there was enough information really there. For me I needed to see the papers myself, the conclusive evidence of all the different tests and you know scientifically weigh up if there really was any evidence. And it didn't actually seem that there was any actually any really proper conclusive evidence that it was in anyway causing the MMR.
I think unless you actually see the medical papers then it was quite difficult at the time to make a proper decision.
Right from scratch and then the conclusions that each paper had drawn. Rather than the newspapers because they pick the bits that they want to pick and I don't think you necessarily get a true, I know they say they quote bits of papers but you don't know, depending on what angle they want to give you, they'll skew it and so I don't think you can necessarily trust what you read in the papers. But if you go right down to the research side of things then you surely can, and if you read medical journals or go to medical books to read about the side-effects of various illnesses then they should be truthful.
- At time of interview' married, one son, aged 17 months. Parent's occupation' Mother- Editor (Publishing), Father- Web Editor. Ethnic background' White-British.
So for me the decision was never not to vaccinate or not, it was a decision between triple jabs or single jabs. And I guess I just felt I really needed to be informed. Because you know that the GPs are going to tell you that it's the right thing to do is to have the triple jab. Because that's what they have to do. And I just wanted some sort of more impartial view. So again we're lucky, we had another friend who's a hospital doctor. And he pointed me in the direction of a paper, which had been written. It's from Drugs and Therapeutics Bulletin, volume 41, number 4, April 2003, page 25. And it says at the top, 'The independent review from the consumers' association'. I'm not sure which consumers' association. But what it is, is a review of a lot of studies that have been done looking for links between MMR and autism.
And I read this and to summarise, one of the things it says is that autism has increased, or recorded incidences of autism have increased, you know, over the last ten or twenty years. The sort of line of autism has gone up like this. But at the time that the MMR jab was introduced, which I think was 1988, you might have expected the rate of increase to suddenly spike upwards like that. But the gist of this paper was that, although it was increasing, it wasn't increasing any more because of the MMR jabs. And it also suggested that there wasn't any link between numbers of people who reported autism whether they'd been vaccinated or not vaccinated. Again there didn't seem to be any connection. It seemed equally likely that you would report autism if you hadn't been vaccinated.
So on the basis of this I think I tried to engage my scientific brain and think, 'Okay, you know, these are independent people. They haven't got a particular axe to grind here'. There are further risks associated with the single jabs, because your child is not immunised for a longer period of time and is therefore in slightly more danger themselves, but also posing a slightly greater risk to the rest of the population, particularly babies who haven't been immunised because they're younger. So with a slightly heavy heart I thought I'd get him the triple jab. If I hadn't read this, I'm not entirely sure what I would have done actually. But this was sufficient for me to make my mind up.
Some parents trusted the information given by the government about immunisations and believed that if MMR was dangerous they wouldn't allow it to be given to small children. Others said they didn't pay any attention to information provided by the government and didn't let it influence their decision either way.
- At time of interview' married, one son aged 1 year. Parent's occupation' Mother- Full time mum, Father- Commercial Ship Operator. Ethnic background' White-British (Scottish).
Immunisations are a great thing and we're lucky in this country to have them offered to our children. So I strongly believe that we should get it done. The autism link is the only link that I've really heard about. I've not, to be honest I've not researched it or, maybe as much as I should. I just think sometimes you can read too much on things and get yourself all worked up and then it doesn't necessarily lead you to the right place anyway.
I've spoke to my parents about it, I've spoke to friends, and we're all of the same, like that the government wouldn't let you be doing this to your little child that's only one if there was something seriously going to happen to him in later life. And you have to go with that, just have faith that it'll work. And I've trusted the professionals this far. They delivered my son for me, they've looked after us at the beginning, so I don't see why I should turn against their great advice now when it's got us this far and everything went fine so far.
- At time of interview' married, one daughter, aged 10 weeks. Parent's occupation' Mother- Jeweller, Father- Jeweller. Ethnic background' White-British.
There's a lot of basically indecision around. I spoke to well, five or six mums, one of them had chosen to go the route of the single jabs and pay privately and interestingly enough she actually works in the healthcare industry. She said that the reason that she has decided to do it was because she would never forgive herself if they then did decide that there, there was some truth in the finding of the Wakefield report.
But all the other people that I've spoke to said, “Yes it's very difficult, it's a very difficult decision to make.” But I think they decided that the Government again, like me, couldn't possibly back an immunisation programme that was unsafe. As a result, probably five out of six of us are going ahead with the MMR programme. Yes, but there is concerns I mean following the BSE Crisis a few years back I think, you know, the general public did lose faith a bit in the Government and their honesty as to what goes on with the healthcare issues but no I feel that the MMR is the right thing to do, but like I've probably said earlier, if there had been a lot more reports and more evidence that there was problems then yes I would question it.
However, several parents actually did not trust information coming from the government. They personally believed that government information on immunisations has an agenda like other information sources. Some said it was not reassuring because they personally believed it unlikely to be objective and in favour of immunisations. Some felt the information wasn't in as much depth as they needed.
- At time of interview' married, two children, aged 4.5 years (son) and 2 years (daughter). Both children are lactose intolerant. Parent's occupation' Mother- Accountant, Father- Home Dad. Ethnic background' White-British.
Father' But also it's to be aware that information that comes from the government as well is also trying to achieve a purpose, and to actually try and read between the lines. Because you're not trying to fulfil some government quota or doctor's quota, what you're trying to do is to protect your child. So you need to determine what's the best way to protect your child.
So what do you think about the government's approach to it all?
Father' I think in terms of taking the country as a whole and trying to keep our country safe and trying to protect the children it's the way that you would do it. You know, you would actually en masse trying to...
Mother' So I guess we understand their position.
Father' And we're also aware that, you know, any sign of, 'There's a problem with this vaccine' just completely interferes with it and causes so much chaos that you don't actually achieve the objective. So you've got to keep the message very simple and say, 'This is completely safe. Please do it. Everyone will be safe'. But the story's never that simple.
Mother' No. They're not acknowledging that there are the subset of children who potentially react to vaccinations. And as I say I believe that it's a trigger and it's part of a jigsaw, it's not the whole story, there are other underlying problems that, or maybe predispose these children to reacting to these things. I have no doubt in my mind that it may be twenty years down the line but that will be acknowledged. But the government it almost seems a heavy hand in this. I understand why they take the approach they do but it frustrates me that they refuse to acknowledge that this subset exist. You know, a lot of them will say, 'There are no side effects'. Well, there are side effects, those are actually noted by the pharmaceutical companies who manufacture these vaccines. So you can't say the vaccines have no side effects. There are risks with everything and you have to weigh up, 'Are you happy that the risk of that vaccination and the possible side effects were better for your child than the risk of maybe not having the vaccination and catching that disease naturally'. And that's ultimately what you have to weigh up and I don't think the government really give that view. I think they've just been very black and white about it.
- At time of interview' married, one son, aged 2.5 years. Parent's occupation' Mother- Teacher, Father- University Lecturer. Ethnic background' White-British.
And I remember it wasn't publicised whether the Prime Minister's son had had the MMR or whether he'd had them individually. And I remember thinking, 'I'd have found that really helpful, had I known what you had'. But for me that was all part of the conspiracy, that, 'I bet he had individual ones, because they know it's potentially dangerous'. So, yes, it all felt a huge conspiracy.
And we got glossy things from the NHS. I think I maybe got it in a magazine, a CD. And on the CD was a black and white photo of a baby and its parent, and it was all very moody and beautiful. And, 'I'm not even going to listen to it. I don't even want to know'.
Why was that?
Because I thought, 'Well, you'll just give me the same old information about how the triple vaccine is perfectly healthy'.
A few parents who were seeing an alternative practitioner, such as a homeopath, at the time they were making decisions talked to these professionals and got information leaflets about immunisations. Some of the big homeopathic pharmacies also have a range of books and information about immunisations.
Parent support groups
Some parents had found it useful to contact JABS (Justice for Vaccine Damaged Children) for information to help them make their decision or to get information about single vaccines.
Numerous books have been written on MMR and immunisations in general. Some parents had found it helpful to read books or magazines that discussed alternative options available to parents, to give them a balanced overview of both pro and anti-immunisation arguments. A couple of mothers who had lived in other European countries talked about their experiences of anthroposophical medicine* and they had found it useful to read books written by anthroposophical doctors following the Steiner School of thought.
- At time of interview' married, one son, aged 22 months. Parent's occupation' Mother- Full time mum, Father- Dental Technician. Ethnic background' White-British.
And I have a book, it's actually called 'A Guide to Child Health' and, I'm allowed to say that? 'A Guide to Child Health'. And it's written by two German doctors and they are probably called anthroposophical doctors, more on the anthroposophical way, it's Rudolf Steiner way. So it is actually an alternative way of looking into child health. But there again they're doctors. The, she is a doctor in a Steiner school in Germany and he is a GP in Germany. In Germany it works a little bit different because a homeopath in Germany has to have a doctor's degree first and then he can specialise in homeopathy, and I think he is actually also a homeopath. So in Germany you have the possibility to get alternative information but also linked to people who really also know the normal medicine, which for me personally is very reassuring.
So I came across this book about child health. It's just a general book about everything you can imagine that can concern your child from breastfeeding, immunisations, anything, it goes up to puberty and even psychological problems you might face with your child, or your child might face. And it's really, it's got everything. It also talks about measles, the illness itself. And I like the book quite a lot because I thought what they were talking about was very down-to-earth. In a way it was, the way I was brought up, I was brought up in the countryside in Austria and it was very down-to-earth.
But the one that I really liked was very, very, he made a point of not influencing you at all. He just wanted to give you every information he had as a doctor. And at the end of the day he said, 'You have to make up your own mind'. And he wrote this book together with other doctors that are on this panel and they call themselves anthroposophical doctors in a way. So I think, I don't know if all of them are also homeopaths but they're all doctors and they all look at it a little bit in an alternative way. And I thought that book really, really good because there was lots of information. It didn't make you feel guilty if you thought, 'I want to go for the jabs' because there is a lot of reasons why you should immunise as well as there are a lot of reasons why you might not want to immunise. I don't think it's as clear-cut as everybody wants to make it out as it is. It's not. It depends on the environment, it depends where your child grows up. It depends on very, very many factors. So he really showed all the various situations and I thought that was very good.
*Anthroposophical medicine is a complementary medicine that combines elements of conventional medicine with homeopathy and naturopathy.
Last reviewed October 2015.
Last updated October 2015.