Building a more inclusive picture of family and friend carers to improve support

The Centre for Care at Birmingham University is piloting a new national survey of family and friend carers in England. It has been working with family and friend carers, as well as sector stakeholders including Think Local Act Personal (TLAP) to co-design the refreshed survey. Fi Flowers, TLAP, reflects why surveys should be co-designed alongside a broad range of people to ensure the findings reflect people’s lived experience and encourages family and friend carers to participate in this survey.

Adult social care co-production and co-design rests on a simple idea: the people who draw on care and support and family and friend carers are best placed to say what good support should deliver. Services should not start with existing models or assumptions, they should start with what matters to people and what a good life looks like.   

This means asking better questions and enabling people to share their experiences in ways that work for them. 

Surveys can contribute to this by offering a consistent, anonymous and flexible way for many people to take part, while helping to identify patterns over time. 

However, concerns about how representative and meaningful the Adult Social Care Survey (ASCS) and the Survey of Adult Carers in England (SACE) have been building for years. The surveys can be difficult to access or complete, may not capture the context behind someone’s experience and may indirectly exclude people who are less connected to formal services. 

Through the ADASS Spring Survey and a follow up focus group with the National Co-production Advisory Group (NCAG), ADASS asked Directors of Adult Social Services and people with lived experience exactly what they thought about these surveys. 

The findings do not make comfortable reading. Fewer than 6% of Spring Survey respondents were fully confident that ASCS and SACE are fit for purpose, and around a quarter had no confidence at all. Directors and people with lived and living experience raised concerns about accessibility, timeliness, and who gets represented — alongside real doubts about how useful the results are for understanding people’s actual, lived experience. NCAG pointed to the barriers created by postal surveys and long questionnaires: surveys need to be easier to read, understand, and complete.  

To see the full findings from ADASS Spring Survey, please see the topic report.

Currently, the SACE only reaches family and friend carers already known to their local council. That means anyone arranging care privately, or newer to caring, or who aren’t or don’t feel able to engage with the local authority, can simply slip under the radar. We need to ensure that we hear from everyone’s experiences. 

The good news is that this has been recognised nationally and that there is a real opportunity to change this. 

The Centre for Care at the University of Birmingham has been commissioned by the National Institute for Health and Care Research (NIHR) and the Department of Health and Social Care to pilot a new, nationally representative survey of family and friend carers in England. Co-designed with family and friend carers, local authorities, government, charities and grassroots organisations, it aims to build a fuller picture of carers — both known and unknown to councils. 

Kate Sibthorp co-chair of NCAG says “As a family and friend carer, it’s encouraging to see parts of the new national survey co-produced with carers themselves. Too often, surveys don’t fully reflect the realities of caring or ask what really matters to us. 

Involving carers in shaping the questions is a positive step towards making our voices heard and our experiences better understood. What matters now is that our feedback leads to real improvements in support.” 

This is the direction we need to take: working with people to understand what matters to them and designing better ways to capture it. And then ultimately working together to make it happen. 

A well-designed survey is one valuable route, but it should sit alongside conversations, focus groups, accessible online and paper options, and opportunities to respond through trusted local organisations. Proactive outreach is essential to include communities often missing from formal feedback. Although this takes time and investment, it produces a richer and more representative picture. The new Survey of Carers should therefore be seen as part of a wider approach to listening and acting on what people say. As part of the Spring Survey, ADASS also collected lots of great examples of the work councils are doing in this space. 

The Survey of Carers is being piloted across the West Midlands (Dudley, Sandwell, Birmingham, Coventry, Warwickshire, Solihull, Shropshire) and South Yorkshire (Doncaster, Barnsley, Sheffield and Rotherham). It opened on October 14 and closes on December 14. We would like to encourage family and friend carers based in these areas to take part and help shape the evidence that will guide the future of carer support across England. All responses will be 100% anonymous. That is a Survey of Carers guarantee.

You can find out more information from on the Survey of Carers here. 

Fi Flowers is the Head of Practice Improvement: Making It Real at Think Local Act Personal.