Recognising and rewarding family and informal carers fairly

What this means

Family and informal carers are an enormous fount of knowledge. They have informed ideas about how to improve the systems the person they care for is part of, and the services that support them as carers. While they shouldn’t step in to do the work of the state, the fact is that they currently save health and social care enormous amounts of money – and this isn’t properly acknowledged in the public narrative. When thinking about positive person-centred work, carers’ ideas, experiences, and the empathy carers’ show, should be drawn upon, with appropriate recognition and reward.

What is the one thing you would most like to change about social care if you had a magic wand?

In the video below, Laura Collins outlines what she would want to change about social care:

The group reflected how carers experienced a very difficult time during COVID-19, and there were legacies from this - that support services, including respite care, did not feel fully restored. As one group member said: Carers are burnt out.

Many carers experience being ignored, having unrealistic expectations forced upon them, being taken for granted, or even being blamed for wider societal or systemic issues. For example, carers can feel erased in conversations about ‘hard working families’ versus ‘economically inactive’ people. Other citizens simply do not identify themselves as carers, and therefore miss out on the support they are entitled to. This all needs to stop, with respect and compassion for carers a key part of strength-based and person-centred work.

As a carer, you can’t just opt out. Who’s the backstop? We are.

How can services work positively with carers?

In the video below, Kadie Chapman explains how services can work positively with carers:

The research

Official data puts the estimated number of carers across the UK at 5.7 million people. However, Carers UK estimate that the figure could be as high as 10.6 million people in the UK (Carers UK, 2022a). Carers Week (2023) found that 73% of people who currently provide unpaid care, or have done so in the past, have not identified themselves as a carer – missing out on financial and practical support as a consequence.

44% of working-age adults who are caring for 35 hours or more a week are in poverty (Joseph Rowntree Foundation, 2022) even though, through the care they provide, carers in England and Wales contribute an estimated £445 million to the economy every single day – equating to £162 billion per year (Petrillo & Bennett, 2023). The value of unpaid care is equivalent to a second NHS in England and Wales (Petrillo & Bennett, 2023).

In terms of the particular issues brought up by the More Resources, Better Used group, some other statistics tell a stark story of the reduction of monetary and other support for carers in the years between 2015/16 and 2020/21:

• An 11% drop in the numbers of carers in receipt of ‘direct support’. This represents 13,000 fewer carers who now do not have access to the kind of choice and personalisation that this type of support is designed to offer.
• Access to breaks for carers declined by 42%.
• Local authority gross expenditure on services for carers was reduced by 11%.
• 36,000 carers in this period have been offered information and advice only, instead of support.

(Paddison & Crellin, 2022)

Carer’s Allowance is the lowest benefit of its kind, £76.75 per week at the time of writing, and only available to carers who provide more than 35 hours a week of care (Carers UK, 2022b). This means that carers are particularly vulnerable to the cost-of-living crisis, with one in six of all carers currently in debt – something which increases to two in five of all carers on Carer’s Allowance (Carers UK, 2022b).

Petrillo et al. (2022) found that the economic and career hit that most carers will experience is not equal. While people in management and professional occupations form the majority of people who become carers every year, those who provide the most intense care – defined by the research as over fifty hours per week – were more likely to come from ‘semi-routine and routine’ occupations (Petrillo et al., 2022). People in these occupations are less likely to earn higher salaries than those in management or professional occupations (Williams et al., 2020).

The COVID-19 pandemic was found to have impacted carers’ mental health, with issues including isolation, exhaustion and reduced trust in statutory services all increasing during the pandemic (Linden et al., 2022). Personal care, socialising, and monitoring at home, often continued or became entirely undertaken by family members (Samsi et al., 2022). Carers felt they had to ’shout louder‘ than they normally did in order to be heard (Linden et al., 2022) and the lack of respite care, personal space and external activities risked making their caring role unworkable for them (Burrows et al., 2021).

Templeton et al., (2021) found a positive example to support carers in Wales. Where carers’ needs assessments were carried out by voluntary sector workers trained in conducting assessment, and who were allocated up to eight hours with each carer to complete the assessment, the reaction from carers was more positive than when the same assessments had been carried out by local authorities, and more people were encouraged to come forward for assessment (Templeton et al., 2021).

What you can do

If you are in senior management: Set the tone for appreciative, empathetic work with carers throughout your workforce. Celebrate carers as the fount of knowledge and experience about both their own needs and strengths, and those of the person they care for. Even small gestures, such as organising events for the annual Carers Week, can underline that people’s caring work – and the economic value it brings – is acknowledged and appreciated. It may also encourage people who do not identify as carers, but do provide unpaid care, to reach out for support.

Recognise carers’ value in co-production. Value their time with money and with your actions. Ensure carers’ feedback is regularly and meaningfully sought out, and acted on, to improve your response to carers.

Consider the role of the caring identity and how it may be preventing carers from accessing the support they are entitled to – encourage your workforce, providing more resources where possible, to spend more time with carers to proactively encourage carers in getting the support they are entitled to, including a carers’ assessment. Ensure legal literacy training covers rights for carers under the Care Act 2014.

If you are a commissioner: Paddison and Crellin (2021) suggest two specific actions for commissioners:

1. As part of place-based commissioning, recognise carers as a group for whom there is clear evidence of poorer health outcomes. Include carers in health inequalities impact assessments, and explicitly include data on carers’ health outcomes and care experiences as part of the Core20Plus5 approach (which is an approach to reduce healthcare inequalities).
2. Develop a succinct plan identifying actions to support carers, with clearly identified indicators of success, and clarity on responsibilities for delivering this.

If you are in direct work: Carers very much value your direct acknowledgement of the hard work they do. Understand their world. Appreciate their stories and their perspectives. Be their champion. Fight for their rights.

Of direct practical importance is your support in helping carers access financial support they are entitled to. The research is clear on the amount of financial stress that carers are facing. Are the carers you are working with getting all the benefits they are entitled to? Are there any local services that can help them? While being sensitive towards shame and stigma, helping with finances and economics is an incredibly important aspect of working with carers.

Further information

Explore

There is a wealth of research knowledge on carers (Research in Practice has an entire section of its website devoted to carers, for example). Iriss (based in Scotland) has a helpful overview of the evidence on carers’ mental and physical health, with an additional focus on finances and employment.

Watch

In this video, carers directly explain what they would like from a social worker. The website also contains a number of useful training resources and case studies for positive, strength-based working with carers.

This video from Carers’ Week 2023 provides a selection of carers’ voices via tweets and social media posts.

Connect

Carers First has information and links on financial support for carers, and an online support service for further help and advice.

Read

Carers’ Week 2023 produced a report on unpaid carer identification.