Estimates suggest there are 310,000 unpaid carers in Wales (10.5% of the Welsh population) providing help or support to individuals because they have long-term physical or mental health conditions or illnesses, or problems relating to old age (1). Understanding the health and wellbeing of unpaid carers is essential to help identify those who may need support to maintain their good health whilst they also care for others. However, information is fragmented across different data systems, making it more difficult to understand needs in an area and provide an integrated offer of support. In Wales, local authorities carry out carer’s assessments to help inform the type and level of support (2), but other routes to support may include through primary healthcare and social care.
This short report, conducted by the Networked Data Lab (NDL) Wales, investigates the potential of combining local authority carers' assessment data with routine healthcare records to better understand the demographics and needs of unpaid carers in a local area. This approach aligns with Priority 1 of the Welsh Government’s 2021 strategy aimed at identifying unpaid carers (3).
NDL Wales is a collaboration between Public Health Wales, Digital Health and Care Wales, Swansea University, and Social Care Wales, and one of five advanced analytical teams in the UK. Funded by the Health Foundation, these teams work collaboratively using linked datasets to address key issues facing health and care services (4).
For this research, NDL Wales worked with Neath Port Talbot, Swansea, and Denbighshire local authorities. The team linked carers' assessment data, routinely gathered by these authorities, with extensive routinely collected electronic health record (EHR) and administrative healthcare data housed in the SAIL (Secure Anonymised Information Linkage) Databank's Trusted Research Environment (TRE) (5). This method provided novel insights into the demographic profile, health status, and healthcare use of unpaid carers across these three regions.
There was an increase in unpaid carers recorded in primary care during the COVID-19 pandemic.
There was little overlap in the unpaid carer population recorded in the primary care and carers’ assessment data.
Overall, unpaid carers were mostly female, from older age groups and living in areas of lesser deprivation.
Unpaid carers had poorer health and higher health service use than non-carers.
Health service use by LA-identified unpaid carers was higher than GP-identified, though this was largely due to the older age of LA-identified unpaid carers.
This study has demonstrated that it is possible to use local-level routine data from local government linked to anonymised individual-level, routinely-collected, population-scale electronic health record (EHR) and administrative health care data sources available within the SAIL Databank to understand the population of unpaid carers at a local level. This study also suggests that LA and GP data sources capture demographically distinct populations. It is difficult through routinely collected data to identify unpaid carers and to inform plans to support unpaid carers which highlights a need to have a more integrated system for supporting unpaid carers to ensure they receive the support they need.
(1) Unpaid care by age, sex and deprivation, England and Wales - Office for National Statistics [Internet]. [cited 2023 Aug 17]. Available from: ons.gov.uk
(2) Carer's needs assessment - Carers Wales [Internet]. [cited 2024 Jan 24]; Available from: carersuk.org
(3) Strategy for unpaid carers: delivery plan 2021 [HTML] | GOV.WALES [Internet]. [cited 2023 Sep 5]. Available from: gov.wales
(4) The Networked Data Lab - The Health Foundation [Internet]. [cited 2024 Jan 24]; Available from: health.org.uk
(5) Home - SAIL Databank [Internet]. [cited 2024 Jan 24]; Available from: saildatabank.com