Volunteers for Demos Survey

Volunteers for Demos Survey

Feb 26, 2015

Demos is an independent think-tank (research charity) based in London. They are currently being funded by the True Colours Trust to look at what support is available across the UK for children and young people with complex disabilities, life-limiting and life-threatening illnesses, and their families.

The aims of the research are: to increase funding to the sector, influence government policy, and improve services for these families.To help achieve these, they would like to hear your views about:

  • what support matters most
  • what is working well
  • what is working less well
  • what improvements you would like to see

If you would like to help with the research, please click on the relevant link below:

If you are a young person (16-26) with a complex disability, life-limiting or life-threatening condition, please click here to complete

If you are a family carer of a young person (26 or below) with a complex disability, life-limiting or life-threatening condition, please click here

If you are a practitioner or formal service provider for children or young people with a complex disability, life-limiting or life-threatening condition, please click here

To find out more about their research, please click here

The survey is open until 16 March.

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  • Children like Lucy don’t get the opportunity to go to sleepovers or to their friends for tea, so the interaction she has at the hospice is priceless. Heather, Lucy’s mum
  • EACH supports families when they’re at their absolute lowest, helping them to come to terms with their child’s illness, losing them and beyond Brad, Stanley's Dad
  • EACH helps us to create lovely memories and has played an important part in all of our lives, not just Lucy’s. Heather, Lucy’s mum
  • We are also supported by the 24/7 True Colours nurses and it’s so reassuring knowing we can call on them whenever we need support or advice Helen, William’s mum
  • EACH has helped us keep Stanley’s memory alive. And allows us to look to the future Brad, Stanley's Dad
  • It’s been a great opportunity to meet other parents in a similar situation, something that doesn't really happen anywhere else. Helen, William’s mum
  • Renee loves going to The Treehouse, but it’s great that care staff are also able to visit us at home too. Stacy, Renee’s mum
  • I can’t imagine what it would have been like. Nobody should have to, every family should be offered the support we were, and are still getting Claire, Jacob’s mum
  • When we first heard about the hospice we were apprehensive because we didn’t know what to expect. When we got there we realised it was a lovely place where Renee would be well looked after, and we would be able to have a much-needed break. Stacy, Renee’s mum
  • The play specialists are excellent and I also get inspiration from the activities they organise. Heather, Lucy’s mum
  • We arrived at the hospice feeling scared and alone. We had so many questions – they answered them all and more. Claire, Jacob’s mum
  • I didn’t realise hope was a gift until I became a mum. My little boy taught me many things and that was one of them Claire, Jacob’s mum
  • EACH helped us with coping mechanisms and special ways of remembering Stanley. Brad, Stanley's Dad
  • I really love going to the hospice. I’ve made friends there and get to do loads of fun stuff. Renee

The Treehouse

St. Augustine’s Gardens,
Ipswich, IP3 8NS


Church Lane, Milton,
Cambridge, CB24 6AB

The Nook

Pigot Lane, Framingham Earl
Norfolk, NR14 7PX