Introduction

WHO ARE WE?
We are a research charity called Demos. We are working with another charity called the True Colours Trust.

WHAT IS THIS ALL ABOUT?
We are trying to find out about what sort of help and support is available for children and young people with a complex disability, or a life-threatening or life-limiting illness, and their families.

DOES THAT MEAN ME?
If you’ve been sent this survey, then probably, yes! If you have a disability or health condition which means you need help and support with everyday things – like washing and dressing, getting around, eating, learning, or having a conversation – then we’d like to hear from you.

WHAT DO YOU WANT TO KNOW?
We want to find out about your experiences: Who helps you, and how? What works well, and what doesn’t work so well? How do you think people could support you better?

WHAT HAPPENS TO MY ANSWERS?
The information you give us will help us to write a report, but any answers you give will be anonymous (we won’t use your name).

WHAT ELSE DO I NEED TO KNOW?
There are 18 questions, and the survey should take about 20 minutes to fill in. You don’t have to answer anything you don’t want to. You might need help from someone else (like a carer or family member) to fill in the survey.

WHAT IF I'M STUCK?
If you get stuck, or if you want to give your answers on the phone instead, you can call Ally on 020 7367 6330. Just say you’re filling in the True Colours Trust survey and you’d like some help.

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