Supporting choice and control - adult carers

Empowering carers

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.”

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?

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 integrated care system to deliver assessment and support services to carers over 18. There are currently around 10,000 carers over 18 registered with the organisation, which supports adults or children. Carers are referred by a range of agencies and may self-refer. Each carer is offered the opportunity to talk about their caring role and how it affects their physical and emotional health and wellbeing, which includes the need to access breaks. Around 500 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, the breaks are either delivered directly by Carer Support Wiltshire or accessed through external funding such as local authority funding via a Care Act assessment, community grants or small grant funding organisations. Break options include Carer Cafés run in local areas by volunteers, hobby groups, social or leisure activities or therapeutic treatments. Some carers also access a volunteer led ‘Here to Talk’ which allows carers simply to talk about themselves and take some time away from their situation.

  Carer Support Wiltshire facilitates the Wiltshire Carers Forum. The Forum works together with commissioners and service providers to influence the development and delivery of services for carers and those they care for in Wiltshire. The forum ensures that the challenges faced by carers are clearly understood by those locally who make decisions that impact on them and the person they care for.

  Carer Support Wiltshire employs 55 members of staff, complemented by 99 volunteers.

  Budget: £1,749,000 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

  The Dementia Peer Support Group 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. The service has more than 4,000 registered 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.

  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. We provide 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.

  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 an approach was trialled where both carer and cared-for attend together initially, once settled undertaking appropriate activities with trained staff. This created a range of services, some of which are described below.

  1. Monthly Dementia Peer Support Group - Dependents meet in one room with paid/trained care workers to enjoy appropriate activities, (music bingo is a particular favourite!), and have some refreshments. Next door, carers can enjoy a cuppa and a period of respite, knowing that their loved ones are safe and happy. Numbers for this have been increasing. Carers can talk openly, ask difficult questions, cry if they need to and gain information and support from staff and their peers. Some fantastic friendships have been formed along their journeys.
  2. There is a similar set-up at the Silver Linings Group at Every Cloud Farmhouse, working in partnership with Every Cloud volunteers, plus a local care company. A therapy dog attends too plus a member of staff and a volunteer from Swindon Carers Centre. Dependents are supported to engage in activities while carers can have a period of respite, they may choose to walk in the lovely surroundings alone, in a group or stay and chat with their peers. A volunteer makes wonderful cakes to be enjoyed with a hot drink. There are places for eight couples here.
  3. Walk & talk events are held at a park/woods in Swindon. Carers and dependents stay together and are supported by staff and volunteers. Groups stroll for about 40 minutes along various pathways and depending on whether attendees are using a wheelchair or walking aid. The groups then meet back at the cafe for conversation and refreshments. This event is increasingly popular and, in all winds, and weathers, people choose to attend for fresh air and company!

  Swindon Carers centre is part of the Dementia Action Alliance (DAA) and the Dementia Steering Group, with the aim of making Swindon a dementia friendly place. Various organisations were doing some great work but not everyone was aware of this, so a WOW Guide is produced (What's On Wiltshire-Swindon) every two months which includes all events going on in and around Swindon in a calendar format.

  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

• Finding time to relax including a ‘Taking a break’ fact sheet (Carers UK, 2022)
• Coping with guilt, resentment and other difficult emotions (Carers UK, 2019)
• Supporting adult carers, quality standard (NICE, 2021)
• Supporting adult carers, guideline (NICE, 2020)

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

• Funding, sources of support and my rights (Carers UK, 2019)