As a charity we constantly strive to make sure the ‘voice’ of families sits at the heart of what we do. Put simply, this means that we work closely with families in a variety of ways to make sure the support we provide and the ways in which we provide it properly meets their needs.

It also means that we’re continually seeking to better understand the issues that families raising disabled and seriously ill children are facing and their concerns and needs. This insight is shared with the different UK governments and key partner organisations to help shape policy and practice in ways that better meet families’ needs.

Some of the ways in which we gather and share ‘family voice’ include –

• Surveys, including an annual family survey;
• Directly consulting with parent carers on different issues;
• Facilitating workshop sessions with parent carers or disabled children/young people;
• Providing opportunities for families to meet with elected representatives, including Government Ministers.

Our Research

Family Fund is the UK's largest charity providing grants for families raising disabled or seriously ill children and young people. To make a difference we have to understand the challenges they face, their views and opinions. This is why Family Fund is committed to producing high-quality research exploring what life is like for families. We take pride in being a valuable source of information for those trying to understand the needs and views of families raising disabled or seriously ill children and young people.

Family Fund has a dedicated team undertaking regular research to gain greater understanding of our families’ direct lived experience of caring for a child or young person with a disability or serious illness. We do this by undertaking surveys, one-to-one interviews, and by cooperating with other organisations carrying out related research. We also continually review the impact of our work and the context in which we provide support, including uptake of our own grants and service trends.

 

Our Engagement

We share our findings with a wide range of voluntary and statutory organisations, including government departments, to ‘give voice’ to the issues and challenges families tell us they are facing. In this way we try to ensure their views on both existing and planned policy are heard, for example by responding to consultations and basing our comments on what families themselves have told us.

We also share our research with elected representatives individually at Ministerial and constituency level, or as part of All Party Working Groups with specific interests in disability and issues relevant to families raising disabled and seriously ill children and young people.

Family Stories

Find out more about the lived experience of our families by reading their stories.