Novel insights show the potential of data across health and care systems to inform support for unpaid carers in Wales

Unpaid carers suffer poorer physical and mental health than non-carers and use healthcare services more than the rest of the population, so it is vital that unpaid carers are able to access support and advice, both for their own health and wellbeing and those they care for. 

A new report from Networked Data Lab Wales (NDL Wales) – a partnership between Public Health Wales, Social Care Wales, Digital Health and Care Wales and Swansea University - shows that by using data from multiple sources including GPs and local authorities, agencies have a more complete picture of the number of unpaid carers across Wales.   

The report, published today, demonstrates that data linkage provides new insights into the population of unpaid carers at a local authority level in Wales, and has the potential to help better understand and support the needs of unpaid carers. 

There are 310,000 unpaid carers identified in Wales in the most recent 2021 Census.  The report found very little overlap between the unpaid carer populations recorded in General Practices and by local authorities, and that unpaid carers had poorer mental and physical health and therefore a greater need for healthcare.  

The NDL Wales team partnered with Neath Port Talbot, Swansea and Denbighshire local authorities to link anonymised carers’ assessment with routinely collected NHS Wales data sources within the Secure Anonymised Information Linkage (SAIL) Databank https://saildatabank.com/.   

The research demonstrated that by using routine data from local government sources, linked to anonymised, routinely-collected health and administrative data  within Swansea University’s SAIL Databank, it was possible to gain a much greater understanding of the population of unpaid carers at a local level. 

Alisha Davies, Head of Research and Evaluation at Public Health Wales, said: “Understanding the size of the unpaid carer population in Wales, and their needs is essential to inform the support available to this critically important population in Wales.  Yet, often this is limited by only having one viewpoint eg from primary care or local government.  Here, this novel approach has demonstrated the value of bringing anonymised data from across health and care systems together, to provide a more comprehensive understanding of unpaid carers as a group, and to support agencies to respond to unpaid carers’ needs across Wales”.   

Jake Smith of Carers Wales, said “This research represents a valuable contribution to our understanding of the unpaid carer population and how unpaid carers interact with different services. It is clear a significant proportion of those with unpaid caring responsibilities are not being identified as unpaid carers and they may be missing out on support as a result. By combining local authority and NHS data sets, this research shines a light on this issue and should serve as motivation for a renewed focus on collaborative working to deliver improved identification and support for unpaid carers.” 

Sarah Waite of Neath Port Talbot council, one of the three local authorities who participated in the study, said: “The research has informed and supported a local review into unpaid carers across adults and young people within NPT.  It has helped start the conversation with our Primary Care colleagues, about how we strengthen our pathways of identification and support throughout the Carers Journey to facilitate a more preventative and early intervention approach.  With the aim of ensuring carer wellbeing, timely access to information and advice and where possible preventing carer breakdown.”