Testimonials from families about the opportunity to take part

“I think we'd have had to have waited a lot longer to get any help at all, whereas, this trial it meant that we got help straight away.” (parent)

“I liked the idea of it all being online, I think going to the appointments of different things can be difficult. Whereas this I can just do whenever I fancy.” (child)

“either way I know I’m gonna get some sort of treatment out of it, some benefit. […] which is better than nothing “ (child)

“I think that was the other thing that kind of attracted me […] it was like well if it means that she hasn’t got to actually go anywhere then yeah obviously that’s beneficial“ (parent)

“We were really pleased, it was a little bit like a lifeline, knowing that we could hopefully get some treatment for (name) and hopefully see an improvement in his health as well.” (parent)

“It was just interesting because [...] especially when the funding was cut, there was nothing I could do and it’s frustrating, but [...] when I saw the study at least it’s like an opportunity to try and manage my condition.” (child)