Interview 12

Brief Outline: For DTaP/IPV/Hib' Followed recommendations of health professionals for their son. For MMR and immunisations for their daughter' Conducted an extensive review of the literature and scientific studies using the Internet and talked to their GP and health visitor.

Background: 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.

Felt the media reporting always had a certain spin or gloss and didn't recognise the concerns of parents who chose not to vaccinate.

Father' I think it, the way it appeared to us was that there, there was obviously the generalised story, which is, 'MMR is completely safe' and, and given the data set that's been examined that's probably a valid conclusion to, to draw. And so that's the one that everyone put across. And every time it's reassessed and they said, 'New survey says that it's completely safe' they're examining the same data set. What they don't always recognise or, and they certainly don't put in their editorials or whatever, is that actually that data set doesn't include certain children. And when you include those children there's, there's more of a concern. But obviously, you know, when you're trying to get herd immunity, you're trying to take everyone to take a vaccination, you won't necessarily put all the bad points in because you, you want everybody to take it as, as much as possible. So-

Mother' I think we felt that there'd been a lot of gloss -

Father'  Yes

Mother' -  put on it. There wasn't acknowledgement that there are some children who should not be vaccinated, even though obviously the pharmaceutical companies say that themselves, that, you know, whenever you see anything about MMR on the television or whatever it, it's always put with a certain spin, and that, you know, parents who don't vaccinate are selfish and, you know, you're silly to have concerns.
 

When they weren't getting the information they needed from the health professionals about immunisations for their lactose intolerant son, they decided to do their own research.

We have a very supportive surgery. The nurse there was very happy to talk to us. I think there is, I suspect the GPs feel that there isn't any case to answer and that MMR is safe and for many children it probably is. But they were open-minded, they were happy to talk to us, and we have had absolutely no pressure at all from them to vaccinate any further. They understood our concerns, they understood our reasoning for the decisions we took, and have, if not, I wouldn't go so far to say that they've been supportive, but have been understanding.

But many times we had done far more research. And at the end of the day a GP is a general practitioner, they can't be expected to be experts in every field. But what frustrates me is when you get to see somebody who is sometimes an expert in a particular field and they are still very reluctant to acknowledge bowel damage, that lactose intolerance truly exists and that both children had had it from birth, which we are led to believe is very unusual.

So there was a, you know, we felt quite rebutted a number of times. But in many ways it, it worked well for us because it gave us a natural scepticism about I guess the medical profession. And so that's what drove us to then do our own research and do the amount of research we did. Whereas, you know, maybe if people had just said, 'Oh, yes, you're right' or, 'you need to do this' we wouldn't have actually been driven. But because we were being, I guess people just didn't know that much or, you know, if they did, they didn't have the depth of information that we actually felt we had to do ourselves. It was up to us to make that choice for our children, it was up to us to do that research. So that's the path we led.
 

Using the Internet to review research papers of scientific studies led them to decide that immunisation was not the right decision for their lactose intolerant children.

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.
 

Thought that the government information did not acknowledge the possible side effects of vaccines.

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' Yes.

Mother' But

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.  
 

Be aware that different information sources have different agendas.

Mother' I think research. Just keep reading everything you can get your hands on and make your own view. You know, there are some very good websites that have balanced information. You do just have to go through it, you have to trawl and make your own judgements about what you think's right and what's wrong. And ultimately it's your gut instinct as a parent. I truly believe that parents do have that instinct for their children and you have to look at your child and decide. Make sure you understand what the potential side-effects are but look at your child and think, 'Are they well enough? And do they need this vaccination? Do I understand the illnesses it's vaccinating against and, you know, the complications or otherwise of that?' And, and then make, make your own choice based on that. So we're not saying, 'Absolutely don't vaccinate' but, 'Just make sure you understand the risks'.  

Father' And double-check the information as well, that as much as you can't trust information necessarily from websites.  You obviously go to technical papers and they have to go through peer reviews and you get people who disagree with those anyway, scientists in a similar field. 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.
 

Parents need to weigh up the risk of potential side effects of the immunisation versus the risk of their child catching the disease or having complications from it.

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.
 

Feels more comfortable with the risk that their children may catch measles than immunising against it.

Mother' And actually I don't have a fear of, you know, every year since our son has been born there has been, 'There's going to be a major measles epidemic'. Well, in reality I think there's measles epidemics every three, two to three years anyway, and obviously, you know, it depends on the seriousness of that. But the kind of scaremongering that goes on just actually really frustrates, makes me more cross and, and more determined in some ways that parents should have more information. Because it does feel like scaremongering every year when they say there's going to be a, an epidemic. And, yes, we have a risk that both our son and daughter could catch natural measles. But actually I feel far more comfortable with that and dealing with that than, than actually vaccinating them against it.

Why is that? Why do you feel comfortable with the measles?

Father' Because I think partly, I had measles as a child and it I think it was far more common then. But now the media has portrayed it as a deadly killer disease, which, okay, it can be, there can be complications that cause horrific problems for children, but it's a childhood disease that, it's not like smallpox. It was something that used to exist and it's been a nicety that people are vaccinated and it's helped obviously with some children who have the complications. But it's always portrayed now as a deadly killer, which I'm not sure is the whole truth.

And I, and I think part of it is, when I was a child everyone got mumps, you know. You, it was, I certainly had it. And all I remember is my father keeping out of the way, you know, when I had it. And it was just something all the kids had.

Mother' And I think there is, there is an element that it, again we believe that having some of these illnesses actually builds the immune system, which protects against other illnesses as you get older. The, you know, the immune system needs to be challenged. You know, it's the same theory about you mustn't have your house too clean and, you know, people who have animals for example, dogs, cats, you know, children seem to have fewer allergies because they, you know, they are exposed to some of these things. And I kind of feel the same way about, about some of these illnesses, you know. Having chickenpox is, is fine. It's a, an illness and children's bodies need to develop and go through these things to actually build their immune system against perhaps more serious illnesses as they get older.

Father' It's why their immune systems are there.
 

Have a personal belief that immunisations are good for the majority but should not be given to a small subset of children.

Our view, having done the research we've done, is that there are some children who should not have vaccinations at all. And I think those children, it may, it is a subgroup, but it's not clear to me is how big that subgroup is at the moment. I know many children who've had the triple jab, who've had other jabs without problems, and I perfectly accept that, you know, for many children it is fine. I would like to make sure that parents know what the side effects are and I do feel strongly that they're not informed about that.  

There are known side effects to all vaccinations. That's a stated fact and that's, you know, normally in the literature that should accompany any vaccination. So I think what we decided was that knowing the bowel problems our son had, had we felt that, that was really a contraindication for him having certainly the triple jab. But also after further research we decided that even the single measles jab would be too dangerous, based on his condition. And that was why we decided not to vaccinate any further at all. On the basis that we do believe that there are some children who should not have any vaccinations at all. For many it is fine, it is safe. We have a lot of friends who've come to me for advice on vaccination and I have said they have to make that choice themselves based on how well they feel their child is and whether, you know, they are able to take those vaccinations. So I'm certainly not dead set against vaccinations. I just think that parents should have all the information, know that there are actually side effects that can come from any vaccination, and obviously to make sure that if they are vaccinating their child that the child is in the best health state to take that vaccination. 
 

They personally believed their son's lactose intolerance problems would put him at greater risk of a reaction if he had the MMR or single vaccines.

There are known side-effects to all vaccinations. That's a stated fact and that's, you know, normally in the literature that should accompany any vaccination. So I think what we decided was that knowing the bowel problems our son had, had we felt that, that was really a contraindication for him having certainly the triple jab. But also after further research we decided that even the single measles jab would be too dangerous, based on his condition. And that was why we decided not to vaccinate any further at all. On the basis that we do believe that there are some children who should not have any vaccinations at all. For many it, it is fine, it is safe. We have a lot of friends who've come to me for advice on vaccination and I have said they have to make that choice themselves based on how well they feel their child is and whether, you know, they are able to, to take those vaccinations. So I'm certainly not dead set against vaccinations. I just think that parents should have all the information, know that there are actually side-effects that can come from any vaccination, and obviously to make sure that if they are vaccinating their child that the child is in the best health state to, to take that vaccination. 
 

They are personally certain that not giving MMR to their lactose intolerant children was the right decision.

So for us we decided that with the bowel as it was it was certainly too dangerous to have the MMR at that time and, we have not had single vaccines either. Subsequent things that have happened which, with certain reactions to foodstuffs, colourants etcetera have actually just reaffirmed that decision for us. We have absolutely no doubt in our minds that if he had, had the single measles vaccine that we would have seen complications from it. I have no doubt in my mind at all that would have been the case.