In this blog, Visiting IPC Research Fellow Dr Melanie Henwood comments on support for carers.
The annual snapshot from the Care Quality Commission (CQC) on The State of Health and Social Care has highlighted once again the shortcomings in support for unpaid carers. It’s a familiar story – carers are not identified adequately by local authorities, and in turn this means they are not being signposted to, or offered, the care and support that can help them. The reality for carers is that they are coping unsupported with more intensive and complex care needs and doing so for longer.
CQC also acknowledged the significant variations that exist between councils across England. This is particularly stark when looking at support that enables carers to take a break from caring (defined as between 1 and 24 hours), which varies from 7% to 61% of carers, with an average of only 20% of carers having access to such support. There is even greater variation in support enabling carers to have a break of more than 24 hours, which is true for an average of just 13% of carers, and ranging from 4.7% to 40% across the country. The wider research evidence on the value of respite is equivocal, but it is highly valued by carers who are able to reclaim some time for themselves.
There is an irony that on the one hand carers have been increasingly recognised in policy discourse and legislation over recent years, while the lived reality for most carers continues to be an experience of being below the radar of services and support unless and until there is a crisis.
CQC found that “most local authorities have not published a recent carers strategy and there is little up to date data on local carers that they have shared publicly”; often councils are still using 2011 census data, rather than the most recent analysis from 2021. Common themes across local authorities identified by CQC include:
- Carers identification: although the number of carers is increasing, sometimes they do not identify themselves as carers and so they are not identified by local authorities.
- Intensity of caring is increasing: carers are caring for longer in both the number of hours each week, and the length of time (months or years) they provide care.
- Increased complexity of care: carers are caring for people with increasingly complex conditions; this is affecting their physical and mental health, as well as financial and employment opportunities.
- Young carers pay a high price: for young carers, there is a negative impact on their education.
- Carer diversity: some councils report that carers from ethnic minority groups are less likely to seek help than their counterparts from White groups.
Those (relatively few) councils which demonstrate a more strategic approach to supporting carers are more likely to be characterised by:
- Improving carer awareness: raising awareness to enable carers to find information about assessment and support.
- Greater recognition of diversity needs: identifying a more ‘culturally sensitive’ approach, to encourage more people in ethnic minority groups to identify and seek support.
- Recognising needs and capacity: including unpaid carers in some market position statements as part of an approach to shaping the care market, including in relation to hospital discharge and enabling people to return home.
Ensuring there is proactive carer identification and access to assessment are the building blocks for personalised care and support that both addresses carers’ wellbeing and supports the person they are caring for. Why it remains so difficult to embed such practice is more fundamental; at a time when local authorities are facing continued austerity and budgetary demands, it is easy for carers who are so often hidden from sight, to be overlooked. The legacy from the Covid-19 pandemic continues to be felt and carers were arguably impacted particularly heavily when many services were unable to operate in person and carers needed to step in and do more. It is likely that fewer carers have been identified and supported as a consequence.
As we have found in working with different organisations and leadership teams, there can be substantial internal barriers to change, not least the organisational and managerial culture. The development of a strategic approach to support for carers is more likely in councils characterised by an approach that:
- adopts a ‘what matters to you’ approach to conversational assessment;
- promotes strengths-based and flexible personalised support, including the use of personal budgets for carers;
- trusts social workers to exercise autonomy and judgement without multiple bureaucratic impediments (such as panel approval); and
- pays close attention to carer experience and outcomes.
The need to support carers is widely accepted and the Department of Health and Social Care (DHSC) has earmarked £327 million from the Better Care Fund to provide short breaks and respite for carers as part of the wider objective of enabling people to stay safe, well and independent for longer at home. The Association of Directors of Adult Social Services (ADASS) has established The Carers Challenge 2023 to create “an online storehouse of great ideas that anyone working in care can use to inspire what they do next to improve support for carers.” In gathering local stories ADASS wants to highlight positive impact and “in particular, evidence from carers of the difference you’ve made to their life.” DHSC has also announced that the Accelerating Reform Fund should include projects that offer “new ways to support unpaid carers and improve services.” Innovation, including appropriate technological development, is important, but it is vital this builds on strong local strategic approaches to carer identification and support. As the evidence from CQC has identified once again, too often these foundations are lacking or inadequate.
If you would like to know more about how IPC can support your organisation to develop and embed changes to improving greater awareness of carer needs, or support improvement to a strengths-based approach relevant to the “carers pathway”, then please contact Professor Fiona Richardson.
