What works in transforming services for unpaid carers?

Introduction

Download the IPC publication here.

IPC Consultant Dr Agnes Turnpenny and Visiting Research Fellow Dr Melanie Henwood reflect on some of the key findings from a major piece of evaluation of Norfolk County Council’s model of support for unpaid carers.

In the UK there are 5.7 million people caring unpaid – or ‘informally’ – for family members or friends; the size of this population of carers far exceeds those working in both social care, and the NHS in England (1.6 million in each). It has been estimated by ONS that the total hours spent in informal adult care (7.9 billion) would equate to more than 4 million adult social care workers to provide individual level care. It is often observed that it would be impossible for NHS and social care services to function if unpaid carers did not provide the support they do and the total value of this care is estimated at almost £60 billion per annum. For many, it is a significant commitment and at least 1 in 4 carers are caring for over 50 hours a week, with many providing continuous care around the clock. For all these reasons, supporting carers makes sense, and the 2014 Care Act enshrined the rights of carers to assessment of their own needs, and support to meet eligible needs. The 2021 White Paper on adult social care acknowledged that “the full spirit of the Care Act has not always been realised” and underlined the importance of ‘kick starting’ a change in the services provided to support carers by identifying and testing new and existing interventions.

We reviewed the research literature on carers and identified a range of risk factors as well as mitigating variables. Carers are more likely to experience negative impact on their wellbeing when the demands on them are intense, when they feel overwhelmed and struggle with the relationship with the cared for person.

Evidence on ‘what works’ to support carers is relatively thin or contradictory; research reviews and meta reviews have found positive evidence around psychological therapy, training and education for carers (essentially giving carers techniques to adopt when they are stressed by caring demands). Support groups and peer support also have positive effects on carers, while respite and short breaks appear to have negative or no measurable effect on carers’ wellbeing, although carers identify positive impact and satisfaction. Different carers need different support, and often a combination of interventions to best meet their needs.

Evaluating Carer Support in Norfolk

IPC has been working with Norfolk County Council since 2020 to evaluate in real time their transformation of support for carers. Carers Matter Norfolk is a partnership of organisations that delivers a county-wide service to unpaid carers. This is funded by Norfolk County Council and the NHS using a social impact bond mechanism. Our evaluation was completed in July 2023 – although the service continues – and our findings are of wider relevance to local authorities and partners seeking to transform their carer service to improve carers’ wellbeing and support them in their caring roles.

Norfolk County Council set a number of objectives for the new service including:

  • Creating a universal service for carers with a single point of access and a simplified pathway to access other services.
  • Improving carer identification and contact, and identifying carers that were in most need of support, and at high risk of breakdown.
  • Improving the wellbeing of carers and sustaining them in their caring relationship (defined as preventing carer breakdown).
  • Operating a ‘carer-centric’ (person-centred), and strengths-based approach to identify intended wellbeing outcomes, and the assets available to support these goals.
  • Identifying simple needs and requests for information (low level support) and distinguishing these from needs requiring specific help and interventions (high level support).
  • Providing time limited support intended to build resilience and sustainable independence of carers.

A central assumption underpinning the commissioning of the service was that improved carer wellbeing would reduce the likelihood of “carer breakdown” and reduce spending on adult social care. It was projected that the service would realise savings of £8m over a period of five years in delayed and reduced demand for adult social care and support.

Our evaluation used a theory-based mixed-methods approach drawing on a range of data including administrative data (performance indicators and case files), carer-reported outcome measures, and semi-structured interviews with stakeholders, including carers, at various points during the three-year evaluation.

Our analysis found a varied picture of achievement and outcomes. Certainly, there was qualitative evidence of positive impact on wellbeing for some carers, which was also reflected in enhanced scores on the Carers StarTM used as one of the key outcome measures. Carers particularly valued practical help and flexibility to respond to their needs and enable them to have time away from caring. They were, however, sometimes frustrated by the short-term nature of support rather than regular and on-going help they could rely on and structure their caring commitments around.

Targeting higher risk carers, or those with greatest needs, was not always effective, with lower level support (information, advice and signposting) being offered to carers needing more bespoke support. The service appeared more effective in supporting carers with lower levels of need or those who were caring for someone not (yet) in contact with services. This is likely to reflect higher complexity and intensity of need being associated with service receipt, where carers would already be experiencing stress and negative impact on wellbeing.

We also found that the risk of the caring relationship breaking down – where carers give up their caring role – is rare. Most carers continue to care despite significant negative consequences for themselves over time. When we examined cases where the carer was no longer caring, these were predominantly due to unavoidable circumstances, primarily reflecting a major intensification of the cared for person’s needs requiring more intensive or specialist support. Therefore, focusing on carer breakdown as a key outcome for a carer service can be a distorting objective which over-estimates potential savings. There are also some ethical considerations about whether sustaining caring is always the right pathway, and the decision to stop being a carer should also be supported as a choice rather than viewed as a failing (something which is implied in the use of the term ‘breakdown’).

Conclusions

There are some important findings and conclusions in our analysis for local authorities and integrated care partnerships reviewing their support for carers. Supporting carer wellbeing is likely to require a well-coordinated combination of low-level flexible support to as many carers as possible, while ensuring that higher need carers benefit from contingency support (such as respite) provided through adult social care and delivered taking into account the holistic/dyadic needs[1] of adults with care and support needs and their carers.

Carers who had this contingency support were coping with more intensive demands, and without their continued care, the support required from adult social care would be considerably higher. Providing high quality support to carers makes moral and economic sense; sustaining carer wellbeing enables carers to continue to provide support – where that is their preference – and to complement social care support for the cared for person. It is unlikely, however, that this will enable councils to realise major savings through reduced spending on adult social care, but it should maximise the value of expenditure and enable better informed commissioning to identify and support carers facing the greatest demands.

[1] Rand, S. et al (2022). Applying a dyadic outcomes approach to supporting older carers and care-recipients: A qualitative study of social care professionals in England. Health & Social Care in the Community, 30, e5001–e5009. https://doi.org/10.1111/hsc.13914

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