With regard to patients/parents doing research, while there are people who approach their medical care that way, it's important to realize that many, many people do not. Whether it is about a drug they are given, a medical procedure, whatever, many people simply do what their doctor tells them, and don't question it much. They trust the experts to at least tell them where there could be problems or controversies they need to think about.
And while this issue is in the news as controversial in the UK now, it wasn't a few years ago in the same way. It still isn't here in Canada where I am, many parents would not twig that there is something they should look into, it is treated as a standard of care that is totally accepted.