A freshly designed survey will provide more accurate data to give government invaluable insights into the experiences of, and support needed for, unpaid carers.
The University of Birmingham, in partnership with the University of Sheffield, is designing and delivering a new nationally representative survey of unpaid carers in England.
The Centre for Care has been commissioned by the National Institute for Health and Care Research (NIHR) and will work with academics at both universities to make this new survey available in the autumn of this year (2026).
Unpaid carers are people who provide support to others for a range of reasons, such as long-term illness, disability, physical and mental health, or older age. They provide most of the care to these people in England, yet no quality national data exists about who they are, what support they receive, and how caring affects their lives.
Existing surveys, such as the Survey of Adult Carers in England (SACE), only include carers known to local councils. This means many carers are missed, especially those who arrange care privately or are new to caring. Without better data, it is hard for the national government and local authorities to plan services, support carers, and make fair decisions.
It's an opportunity for us to ask the questions that unpaid carers feel are most important for us to understand about their experiences, needs and priorities.
The Centre for Care team will work with unpaid carers, stakeholders in local authorities, local and national government, and grassroots organisations and charities to codesign the new survey to ensure it accurately reflects their needs and priorities.
This will include the development of new questions and sampling designs to capture a representative picture of unpaid carers known and unknown to local authorities. The work will also inform the review and refresh of the existing Survey of Adult Carers in England (SACE).
Matt Bennett, Professor of Social Policy at the University of Birmingham and Co-Investigator at the Centre for Care, is leading the project. He said: “We're excited to bring together different voices to codesign and test the delivery of a new survey of unpaid carers in England. It's an opportunity for us to ask the questions that unpaid carers feel are most important for us to understand about their experiences, needs and priorities.
“The project will enable us to evaluate how best to capture a more diverse and representative picture of unpaid carers, whilst also modernising the methods and infrastructure we use to do this.”
Professor Kate Hamblin, Director of the Centre for Care, University of Sheffield, said: “The Centre for Care is delighted to have been commissioned by the NIHR to lead this vital project. Unpaid carers are the backbone of our care system in England, yet so many remain invisible in our national data. By co-designing this new survey alongside carers, charities, and local authorities, we can capture a representative picture of carers across the country. This is a crucial step toward building the robust evidence base needed to ensure fair decisions, better services, and the right support for those who give so much."
The project builds on previous reviews and recommendations to address these long‑standing evidence gaps in unpaid carers’ experiences, needs, outcomes and support across the whole population.
Stephen Kinnock, Minister of State for Care, said: “Unpaid carers are at the heart of families, communities and our health and care system.
“For too long, they and their experiences have been overlooked. We’ve commissioned the Centre for Care to run a pilot survey of thousands of unpaid carers to help build a broader and more detailed understanding of their circumstances and experiences. The findings will help shape future policy based on the realities of carers' lives.
“This government is committed to building a system that identifies and recognises our unpaid carers, and our action plan, published this week, sets out how we’re supporting them.”
We’ve commissioned the Centre for Care to run a pilot survey of thousands of unpaid carers to help build a broader and more detailed understanding of their circumstances and experiences.
Stian Westlake, Executive Chair, Economic and Social Research Council, said: “We are pleased that the Centre for Care has been commissioned to pilot a new nationally representative survey of unpaid carers in England. This work will address critical gaps in our understanding of carers’ lives.
“As the UK’s largest funder of economic, behavioural, social and data science, ESRC recognises that high-quality surveys are a cornerstone of the UK’s data infrastructure. By co-designing the survey with unpaid carers, this project will capture wider information about their lives and generate the robust evidence needed to inform better policy and support.”
The initial pilot of the new survey is being run across the West Midlands and South Yorkshire regions. The team has already begun engaging with over 100 carers to design the survey, and 10 local authorities in the West Midlands and South Yorkshire have signed up to take part in the process.
For more information and media inquiries, please contact Ellie Hail (e.hail@bham.ac.uk), Communications Officer, University of Birmingham, on +44 (0)7966 311 409. Out-of-hours, please call +44 (0) 121 414 2772.
Professor of Social Policy
Matt Bennett, Professor of Social Policy in the School of Social Policy and Society, University of Birmingham
