Thank you everybody for your questions and comments on this post. I hope that I was able to answer your queries and perhaps convince you that it is a good thing to take part in research - that research might be useful and can make a difference, at least sometimes!
The questions people asked were very important as they got to the heart of why families should bother taking part in research. Somehow, we do all need to work together to get better evidence to support children, young people, and adults with learning disabilities and their families and carers.
Although it is referring to a study that we have now finished recruiting to (though it is an ongoing study - we are following these 1000 Families over time), you might be interested to read a blog from Jane Raca about taking part in research https://w3.cerebra.org.uk/tag/research-study/
Best wishes, Richard