Interview 28

Brief Outline:

For DTaP/IPV/Hib' Followed recommendations of health professionals. For MMR' Talked to friends, her father who is a doctor, family friends who were doctors, and alternative practitioners. Gathered some information from the media. Talked to their GP about her daughter's egg allergy.

Background:

At time of interview' married, one daughter, aged 3 years who has an egg allergy. Parent's occupation' Mother- Bookshop owner/Teacher, Father- Floor Layer. Ethnic background' White-British.

Believed the evidence wasn't strong enough to prove a causal link between MMR and autism.

The underlying piece of evidence I was told was basically they took files from autistic, they were looking at, at trying to find links between autistic children and looked at everything they had in common. And one of the things that they all had in common was MMR. Which was inevitable because at the time everybody was being vaccinated with it. But it didn't, to me that doesn't justify any kind of cause, link. I mean it was probably something worth investigating just like wheat and hamburgers over, you know, a certain period of time, but it doesn't, in no way does it, you know, was it conclusive for me at all. It didn't allay necessarily other fears but it was, you know, basically wasn't enough for me to feel that it was, you know, a strong piece of research to support any, a problem with it.
 

There was evidence that single vaccines especially as offered by private clinics might not be a safe alternative to MMR.

I investigated it. What, I mean what I found slightly annoying was I mean you couldn't, you couldn't do it. But I did feel that you ought to have the option through your GP. You ought to have to pay for it extra if it was costing more. But I probably would, had it been available to my GP, I probably would just at the time. I don't know that I would, I don't think I would with the next one. But I think I would at the time possibly have, have sort of paid for it, the extra, whatever the extra was, you know, through the GP. But the whole idea of going private, I was never, you know, sort of particularly comfortable with doing, doing that, without there being any hard evidence that it was necessarily going to be more beneficial or safer or whatever else. 

Because there's always people who are willing to exploit it in that degree. And equally there were articles about how, you know, having single jabs didn't necessarily provide the protection that the children needed, and, you know, there were, it wasn't conclusive that, that was going to be a kind of good way forward. And I didn't, I, it sort of wasn't, in a way wasn't really the issue for me. The issue was whether it was safe or not safe. And I just wanted to, you know, sort of make sure that I was fully reassured that I felt that it was statistically going to be, you know, overwhelmingly okay at the end of it, although you can never rule anything out altogether. But I mean all of life and you know, health is, is, you know, kind of best-fit scenario. So you just have to kind of take what you can with it.
 

She talked to a lot of people and gathered a lot of information before making a decision to give her daughter MMR.

But it did become, you know, sort of really anxiety-inducing thing for the whole of the first year. And all of my friends who had children that age were, it was kind of, the main topic of conversation was, 'What have you read? What have you seen? Who have you spoken to? Have you got anything that's going to sway it one way or the other?' And I think the hardest thing, particularly with the MMR, was that you felt whatever you did you were endangering your child's sort of well-being. And that's, you know, which was what made it such an incredibly tough decision. Because it wasn't just, 'Is it going to be good for them or not so good for them?' It was kind of like, 'Am I being socially responsible as far as, you know, everybody else goes? And am I risking my child's life and health and all the rest of it in order to be socially responsible? And if I don't immunise, then am I risking my child's life that way round as well?' 

So it was a kind of, you know, it was a really, really big issue. I then basically read everything I could get my hands on and spoke to anybody who could possibly bear to have another conversation about immunisation with me. And in the end I didn't feel that the evidence or the research against it at the time was strong enough to warrant me not doing it. And I, you know, I then thought about having them all done individually, and just thought, 'Actually, I know I'll end up doing half and not doing the other half, and then I might as well not have started in the first place'. So we decided just to go for it and I was holding my breath and praying that it was all going to be all right.
 

She talked to family friends who were doctors about their decisions for their own children or grandchildren.

I talked to dad and various doctor friends that he had and asked what they'd done with their children and grandchildren. I wanted to know very much people who had given their children the jab and who had been fine, particularly medical people who'd given their children the jab and it had been fine. So I suppose in a way I was geared towards finding people who'd had it and it had been all right, because I did want to be able to go and have it done. But I just needed some support for it.

But I was also aware that they had a government slant, that the government was very much pushing for it. And therefore I wanted to talk to them as a friend, on a friendly basis as to what they would do with their own children rather than just what the line was from the government. And fortunately there were a lot around that were saying, 'We'll absolutely immunise, and the MMR's fine and it to our knowledge is safe'.  
 

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

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.
 

More information should be given about the reasons that lie behind the changes that have been made to the immunisation programmes over the years.

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.
 

It is better to give a professional opinion and explain on what evidence the opinion has been based, rather than just give out the government line.

I think where you, wherever you felt they were talking from their own opinion rather than from the government line you, you were far more likely to trust what they were saying. If you felt they were regurgitating something they didn't believe, and you can kind of generally tell when people are sort of spinning out a, a line. Whereas when people were fairly adamant that it was, you know, kind of not worthy of, paying too much attention to, I was much more reassured by that. Not to encourage people just to lie about it, but it's, you did genuinely kind of want to know what they would do with their own children rather than what the government line was. 

And although I know that it's very difficult in a, in a professional thing, there's a limit to how much you're allowed to say, as a parent all you want to know is that your child's going to be all right. And so it, it's not reassuring to know what the government line is. It is reassuring to know that ultimately your doctor as a professional feels that your child's going, on an overwhelming basis of evidence, is going to be fine at the end of it. And it may be that they're the same thing, but you want to have it from their personal opinion rather than from a kind of government line, that someone is going to take responsibility at the end of the day for what happens. And I think, not in that you'd want to sue them or, just that your child's, you know, basically all you want to know is that your child is going to be okay. So anything that reassures you about that is probably the best way forward.
 

She was more reassured when it was obvious that a health professional had reviewed the evidence themselves and could give an informed opinion.

I was more reassured as well when people had clearly looked at the evidence. Where people were able to say, 'Look, this is...'. I mean I, as I said before, 'This is what the research was. This is what is was based on. This is the kind of outcome of it'. And where they clearly themselves had considered what the issues were rather than just, 'It's fine. Don't worry about it. It's not worth worrying about'. Where, it's just not reassuring at all because you're not even aware of whether they really know what those issues are. It was much, yes, much more reassuring. You felt that they too had considered as a professional and weighed up on a balance of judgement whether it was likely to be detrimental or not.
 

Parents have a social responsibility to immunise their children to keep the population as healthy as possible.

And the measles, I was, you know, just concerned from a social standpoint that basically people need to be vaccinated in order to keep these diseases under control for the good of everybody, not just, you know, for your own child. And I did feel that I had a social responsibility element to that, and that as a parent I would be very angry if my daughter was in a nursery with a lot of children who hadn't been vaccinated and it became an issue. I mean hopefully she'll be all right, having been vaccinated. But I, I think it's, you know, if the health was there and the preventative health was there, that you should take it up, provided you feel it's safe for your, you know, for your child.
 

She no longer has to worry about her daughter catching measles, mumps or rubella when she goes to nursery or to the park.

I would then worry about her being at nursery and swimming pools and ball parks and, you know, there's a lot of places where you come into a lot of contact with a lot of other children that, who you've no idea what, you know, what they may be catching from them. And I do feel that, at least I don't, when she's in those situations I just don't worry about the kind of more serious things. Because you're worried about her falling over and breaking her leg, not about her catching those sort of things. And I think it's a huge reassurance from that. I would be a lot more tense permanently. So although it was horrible at the time thinking, 'Ahh, I'm about to damage her permanently' at least now that she's, you know, sort of okay there are a lot of other things I now don't have to worry about as a consequence. So on balance because she's okay, I wouldn't be saying it at all if the, you know, obviously if the outcome had been any different, it, you know, I've now got a life basically where I'm not having to kind of be overly concerned every day of the week about her coming into contact with other children, which inevitably she's going to do. And she's been in full-time nursery from quite a young age, so it was even more important that she, you know, had some sort of protection against other things that she might come into contact with.