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Supporting choice and control – adult carers’ breaks

Empowering carers

To facilitate choice and control, and overcome the barriers that people face in taking a break or feeling able to do so, carers need to be empowered.

They need to understand what is available, what might work for them, how to access support, how to fund it and how feel confident to do so.

The overall approach needs to be responsive to the diversity of carers and their situations, including:

  • BAME (Black, Asian and minority ethnic) carers
  • LGBT (lesbian, gay, bisexual and transgender) carers
  • male carers
  • young carers in transition to adulthood
  • carers of people with dementia
  • older carers
  • ‘sandwich’ carers

NICE (2021) specially states that: “Services that provide replacement care and support for carers to have a break should make reasonable adjustments to ensure that people with additional needs, such as physical, sensory or learning disabilities, and people who do not speak or read English, or who have reduced communication skills, can use the service. The service provided should be culturally and age appropriate.”

Hazel Brown, Liverpool Care Centre

Information and advice

Information about breaks is a significant enabler for carers and should form part of the information and advice service that local authorities are duty bound to deliver under the Care Act. Carers need appropriate information at the right time. This also needs to be part of co-production. What have local carers said about the information they want and how they access it? What does this mean for young carers?

Carers’ breaks need to be discussed in assessments and be included in the tailored information to carers following an assessment.

Assessors and social workers need to be confident to talk about breaks, the variety of ways of having a break and have the relevant information to support this.

Extra effort may be needed to ensure older carers, self-funders, carers of people with mental health support needs and other ‘hidden carers’ have access to the information they need. Carers want accessible information on breaks – about availability, eligibility and costs, as well as contact information. Your supply mapping can help build this information resource. Carers also want to know how to access funding for breaks – regardless of whether they are known to services or funding their own arrangements.

The anticipated cost of taking a break can be off-putting for many carers. Information must be clear about any charging policy applied by the local authority. The Care Act allows for local authorities to charge carers for services to meet their needs, but recognises that doing so may be a false economy. The Act, however, is clear that carers cannot be charged for replacement care provided directly to the person they care for. Any such charges can only be charged to the person directly receiving care.

To enable people to think more broadly about breaks, information should include a range of examples of different caring situations. Videos of local carers and their stories can have a real impact in helping carers to think about what a break could look like for them. Commissioners and providers should ensure images of breaks reflect local communities and a wide range of caring situations. Ensure your local carers know about and have access to the new Carers UK resource about carers’ breaks. The Carers UK resource will be published in April.

Think about how information reaches carers. Where do people go, what are their communication channels? Information at the GP surgery, pharmacy or via carers groups or faith groups is more likely to reach people than just a leaflet at the town hall.

Amy Cook, former carer and volunteer, Carers UK

Building carer confidence

Some carers need support to even consider taking a break. Investment may be needed in services or approaches that help tackle carers’ guilt, concern or where the person they care for will not accept outside help. Assessors may need training to do this in a sensitive and empowering way. Are there positive stories that show, for example, how a provider has offered something that the person really wants to do? Are there reassuring examples of providers getting to know someone over time and so reducing anxiety? Can providers offer drop-ins or open days?

Peer support can be particularly powerful. Facilitating opportunities for carers to talk with other carers can break down barriers or provide reassurance in a way that services just can’t achieve. Carers’ groups are really important to provide a safe way for carers to support each other and share positive stories. They may need to be creative or have visiting services to reach out to carers who feel they cannot leave the person they care for.

People may also want to come together around shared interests or identities. Needs-specific groups may foster good peer support (for example, the local stroke club or dementia café). Are there ways that young carers want to link up? Are there other communication channels that can bring people together, such as social media? What does this mean in rural communities? How are you fostering peer and mutual support in other services that you could learn from?

Remember, carers may be entitled to advocacy support to engage in assessments, care planning and reviews. There may also be general advocacy services that help carers to have a voice.

Practice examples

Using personal budgets

Personal budgets offer a great opportunity for carers and families to tailor support in creative and flexible ways. The practice examples show how people have developed breaks that really work for them.

Local authorities and health services need to offer clear information about personal budgets and personal health budgets, and about options to take these as direct payments. Staff need training and must be confident in their understanding that there should be no unreasonable limits to how people use their budgets to meet their needs and achieve their outcomes. Local authorities and health services should work together so that integrated budgets are available where appropriate and people aren’t left without choices if their funding stream changes.

National evidence shows that some carers, particularly older people, are put off direct payments because they don’t want the hassle of arranging care and the extra responsibilities of reporting spend. Support may be needed to encourage flexible solutions for breaks and ensure people understand their rights and responsibilities. Direct payment organisations and practitioners could offer varied examples to illustrate what’s possible. Carers will also need information to understand the costs of services or costs of employing personal assistants to develop costed support plans.

Commissioners and support staff need to be transparent about funding – what is available to carers and how can they be supported to understand funding? Don’t just give me a direct payment and not take any responsibility for helping me to manage it. Understanding money and personal budgets is part of empowerment. Explanation is key.

Carers’ Breaks Reference Group discussion, February 2019

Useful links