How the experiences of people with complex disabilities are shaping our policy work

This week we’ve released the findings from a major new piece of research into the experiences and of people with complex disabilities. Our pioneering project involved using a range of research methods to reach over 1,500 people with complex disabilities and find out what matters to them.

By listening to disabled people and learning more about the lives of them and their families, we are ensuring that our policy work is grounded in their experiences.

Reaching out to people with complex disabilities through a range of methods

All our research methods in our recent project were designed with accessibility in mind to ensure as many people as possible were able to take part and that the views of people with complex disabilities were genuinely captured. This is the first time this has been done and it included a survey, interviews, polling and talking with a panel of people with complex disabilities who help shape the work of Sense.

Over 300 people with complex disabilities who receive support from Sense through our services were consulted as part of the project. We did this by including questions in the person centred reviews which regularly take place with every person we support. The research questions were asked by staff members who work closely with each person using the same communication support they would usually get to ensure that their opinions and feelings were captured.

We asked people about what mattered to them, what they want to achieve in the future and the changes they want to see for all disabled people. We also asked about the support they need to stay healthy, getting involved in politics and how the Covid-19 pandemic had affected their lives. Because of the methodology used, we weren’t able to ask every person about every topic, but we were able to ensure a range of perspectives were considered.

The importance of listening to lived experience

The voices of people with complex disabilities are at the heart of what we do and hearing real experiences is essential for us in our work with decision makers. A big part of our work is about communication the impact of policies on disabled people with government, ministers and MPs, and sharing lived experience is essential to this.

Lilias’ son is deafblind and receives support from Sense. She recently spoke to us about her experiences, and she had this to say.

“Your lived experience really matters, and people need to know about it. If they don’t know about it, then people don’t know that things need to change. And things really do need to change.”

Lilias, Fearghas’s mum

We’re so grateful to each and every person who shares their opinion and experiences with us as well as those people who take a more active role as part of our campaigns. Every story shared with us helps to shape the policy recommendations which we then present to decision makers.

For example, using the findings from the recent research project we’ve developed recommendations on how accessible communications need to be improved in healthcare settings and how more disabled people can be supported into work and volunteering.

Using our findings to make change

Everyone should be able to fulfil their potential. When people with complex disabilities get the right support, they’re able to live fuller lives, doing the things that matter to them.

This is why we continue to campaign for change on the topics that matter for disabled people.

We’ll be reviewing these research findings in detail, feeding them into our plans and sharing our recommendations with decision makers. We’ll also be letting everyone who took part in the research know about the impact they’ve had.

Read more about our research findings and the changes disabled people want to see.