Supporting choice and control - adult carers

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.

Hazel Brown, Liverpool Care Centre

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

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.

Amy Cook, former carer and volunteer, Carers UK

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.

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

  • Carer assessments and support with breaks
    Provider: Carer Support Wiltshire Open

    Provider: Carer Support Wiltshire (voluntary sector organisation)

    Carer Support Wiltshire is a voluntary organisation commissioned jointly by the local authority and clinical commissioning group to deliver assessment and support services to carers over 18. There are currently around 10,000 carers registered with the organisation, which supports adults or children. Carers are referred by a range of agencies and may self-refer. Each carer has an initial assessment of the impact of caring on their physical and emotional health and wellbeing, which includes the need to access breaks. Around 400 carers are assessed every quarter and each is provided with a personalised support plan to either maintain or improve their wellbeing either through access to services provided directly by Carer Support Wiltshire or other services local to the carer.

    When it is identified that a carer might benefit from a break, they are either delivered directly by Carer Support Wiltshire or accessed through grant funding, which the organisation raises. There is information available both to the assessors and the assessed about the range of breaks that are available. Break options include Carer Cafes run in local areas by volunteers, coach trips, hobby groups, holidays, driving lessons etc. There is also access to counselling services and referral to psychological support.

    Carer Support Wiltshire facilitates the Wiltshire Carer Involvement Group, which represents a wide range of carers across Wiltshire. The group agrees action on areas of importance that affect carers and the person they care for. There is a wider group of 300 carers working to ensure the voice of the carer helps develop services. Ninety per cent of carers involved in the scheme report that they feel that their physical or mental health has improved as a result. Ninety-seven per cent reported that they felt it has helped to support them in their caring role.

    Carer Support Wiltshire employs 47 members of staff, complemented by 82 volunteers.

    Budget  £1,130,000 pa
    Website: Carer Support Wiltshire
    Contact: Judy Walker, Chief Executive

    See: Supporting choice and control: Information and advice

  • Dementia Peer Support Group – Groups and activities for carers, with support from nursing home
    Provider: Swindon Carers Centre (Charity) Open

    This charity, which has been running its Dementia Peer Support Group for three years, supports unpaid family carers from age five to no upper age limit, from the Swindon area. While most carers for those with dementia are adults, the Centre does also support a number of young carers who are supporting a relative with dementia.

    It provides support groups, training, activities, benefits advice, one-to-one support, a counselling service, telephone support line, GP/outreach, end of life care support for carers and support post bereavement.

    It has more than 4,000 registered carers. The charity also works in close partnership with a local dementia nursing home. Here trained care staff provide appropriate activities and support for the cared-for persons, while their carers meet in another room. The care home also provides free refreshments and dementia training for the carers.

    It has found that a person with dementia may not want someone coming in to sit with them at home, while their carer comes to a support group. So it trialled an approach where both carer and cared-for attend together initially, once settled undertaking appropriate activities with trained staff.

    The carer then moves into the nursing home lounge to meet with other carers for a cuppa and to share hints and tips. They can talk openly without their loved one hearing, they can gain support from centre staff, share phone numbers with other carers. The agency also arranges for a programme of speakers as requested by the carers.

    Following a full organisational review of inclusive practice and carer diversity in 2016, which is reviewed annually and includes an action plan, there has been an increase in the percentage of carers from different protected groups and from marginalised communities using the services. Strong leadership, organisational values and skilled staff were essential to this change which included being more reflective, more curious and reaching out to different communities. By picking up the phone, visiting neighbours, asking questions, sharing experiences and having open and honest conversations, doors opened and mutual trust and respect developed between the Centre and diverse communities of carers.

    Funding was historically provided by donations and grants from Carers Trust and TE Connectivity. In March 2019 it changed to work in partnership with a nursing home and the rooms being used there, the trained carers who support the loved ones, activity resources and refreshments are all paid for by the nursing home.

    Website: Swindon Carers
    Contact: Mrs Heather Goldsmith, Senior Groups & Activities Coordinator

    See: Supporting choice and control: Information and advice

  • Funky Fitness and Fun (FFF) – Breaks involving fitness and leisure activities
    Funky Fitness and Fun Open

    Funky Fitness and Fun was set up to meet demand. It offers various fitness activities. Staff includes four fitness and dance instructors, two chefs, four holistic therapists and five other bank staff ranging from artists to teachers. Fifty members now use the service each week. In addition to fitness, members learn about good nutrition/ cook healthy meals and how certain foods can benefit specific parts of the body. Aims are to promote independence, work as part of a team whilst promoting mindfulness and awareness of others; increase self-confidence and esteem; develop new skills and build on existing ones. Carers gain a break while FFF supports their loved one.

    People’s skills and talents have been realised and maximised: for example FFF works with DanceSyndrome (led by people with a learning disability) who train members to be dance leaders. Members also provide chair-based exercise for older people in care homes. FFF has identified a number of other volunteering opportunities for people e.g. in community cafes/ in local shops.

    General improvements in health and wellbeing

    FFF was set up in 2008 when in-house day provision for people with a learning disability was reducing. FFF ran free sessions offering a wide range of activities. People and carers attended. The fitness sessions were the most popular and it co-produced the community enterprise with people/ carers. On a monthly basis, members inform FFF of health activities they would like to try and it commissions it.

    With carers FFF has recently set up IMPACT – Inspiring More Parents and Carers Together, a networking group for parents and carers to share knowledge and ask questions whilst also creating friendships and reducing isolation. This work has been recognised by POINT (Parents of Oldham in Touch, a well-established local forum) who awarded FFF the ‘Passion for Parents’ award.

    Budget/ how the service is funded:  people pay via their Direct Payment.

    Contact details: Carita Smith, Director

    See: Supporting choice and control: Information and advice

Useful links

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
  • GP Carer Break Personal Budget – One-off payment for breaks in Surrey
    Surrey County Council, Surrey Clinical Commissioning Group and voluntary sector, including Surrey Independent Living Council Open

    This is an award winning programme (HSJ awards) covering the Surrey Heartlands Integrated Care System and the clinical commissioning groups that cover Surrey. It also has a partnership with the Ministry of Defence (MoD) to support carers on a military base in the county.

    Across Surrey, GPs can refer carers for a GP Carer Break. This is a one-off payment that allows carers to have some time away from their caring role. GP Carers Breaks are prescribed based on health needs of the carer at the discretion of the doctor. Since October 2019, each carer referred for a GP Carers Break has been provided with a personalised Carer ‘Care and Support Plan’. This sets down the outcomes the carer wishes to achieve from their Carer Personal Health Budget, and provides additional information on support services available.

    During 2019/20 the programme has been working with primary care colleagues from MoD Pirbright Medical Centre to improve ways of identifying carers on the base, providing 11 families with a Carer Breaks Payment. MOD Pirbright went on to receive an Outstanding CQC inspection. The first GP Carer Break referral has been received from MoD Sandhurst Medical Centre.

    The Carers Breaks Service is being actively promoted across the Black and Asian Minority Ethnic (BAME) community, which represent on average 10 per cent of total referrals. The impact of this is beginning to be evidenced in monthly monitoring reports with an increase from 889 BAME carers registered in 2018, to 1,442 in 2019 – an increase of 47 per cent. In addition, the service now has referrals to carers from the Gypsy Roma and Traveller (GRT) community. Monitoring surveys are run annually.

    The Carers Break Personal Budget may be used to pay for a week away in a care home for the cared-for person to give the carer a break; purchasing replacement care in the home on a short-term temporary basis; part- or full-payment for a break for the carer and the cared-for adult to go away together for a day or longer and other costs such as travel, accommodation, subsistence and hire of mobility aids.

    Some people use this money to purchase replacement care, buy a laptop to keep in touch with people or towards a bigger expense such as a holiday. Whatever is agreed with the social worker is written in the Care and Support Plan for the cared-for person or the carer’s Support Plan.

    Once a break has been prescribed, Surrey Independent Living Council processes the payment on the council’s behalf. Carers are required to produce receipts to verify what they have spent their personal health budget on. The number of Carers Prescriptions made up to the third quarter of the last year across Surrey Heartlands ICS was 1,257 and across the six CCGs 1,717. The number of Carers Breaks across six CCGs was 1,530.

    Contact:  Debbie Hustings, Partnership Manager (Carers), Surrey Heartlands ICS & East Surrey CCG

    See: Supporting choice and control: Using personal budgets

Useful links

Carers’ breaks: guidance for commissioners and providers
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