Support needs for young people in the UK with life-limiting conditions – call for evidence

Categories: Research.

The think-tank has been tasked by The True Colours Trust to investigate families’ priorities and current service provision, and identify where charitable funding can have the greatest impact.

The research will focus on:

  • Key changes to policy, legislation and practice over the past ten years, in all four UK nations, affecting the children, young people and families concerned.
  • Examples of best and innovative practice in providing support, and how these might be helped to grow.
  • The changing nature of the population requiring support, and how services can meet their evolving needs.

As part of this project, the researchers at Demos are keen to hear from young people with complex disabilities, life-limiting and life-threatening conditions, their families, and the practitioners that support them.

To this end, they have launched on online survey to gather feedback on what support matters most to these young people and their carers, what is working well (and less well) and ideas for how things can be improved.

Three separate surveys are available, for

The surveys will be available until 16 March 2015.

In addition to this call for evidence, researchers will also carry out expert interviews, focus groups, and case study visits and plan to publish their findings later this year.

Further information on the project  is available on the Demos website.