What good looks like
Not all of this section applies to every provision, but there are some general themes for features of good support and good provider approaches.
- Clear information – about the range and variety of services and support. For each service, provide information about the type of setting and support, the duration and the cost. We need to know what to expect.
- Breaks need to be easy to arrange – times, costs, eligibility, availability, skills of staff, how to book, contact details.
- Ensure quality – comply with CQC fundamental standards and the family and friends test. Sign up to Quality matters. Involve carers and community members in checking your services. Get feedback from carers and people who use your services.
- Co-production – involve carers in shaping services. What would people like? Be flexible about how you do this and really listen to what they say. Are carers involved in your board, your training, your recruitment?
- Flexibility and variety – overnight breaks are valued, but so are regular breaks during the day. Carers often want to be with the cared for person while they are on a break. Are your services inclusive? Can they respond to specific needs? Can they offer support to people from particular backgrounds and identities?
- Business planning for continuity – have in place good plans in response to your own market research and market position statements. How do you fund and manage your contracts? Can you diversify your offer based on what’s needed?
- Build on what works and do more of what you are good at (e.g. good day services might be trusted and understand people well).
- ‘Get to know me and the person I care for – get to know our family’ – if a carer is experiencing care for the first time, they will need a period to adjust while they get a feel for what works.
- Skilled staff – people don’t want to ‘pick up the pieces’ after a failed break.
- Get the basics right around reliability and communication – keep service users in touch and informed.
- Measure impact – how do you know your service makes a difference?
- Be part of the community.
- Make it enjoyable.
- Use technology to complement support: Technology can offer peace of mind, but be aware that carers may not feel like they are having a break if they are in constant contact with the person they care for.
Argenti Care Technology in Hampshire Open
Providers: Hampshire County Council and PA Consulting
Hampshire County Council and the PA Consulting Group-led Argenti Telehealthcare Partnership have developed a telecare service for carers and those that they care for. Telecare services include environmental monitoring devices for the person‘s home (e.g. to identify gas leaks or fires), devices to detect whether the person has fallen or is experiencing an epileptic fit, and other communication aids to help carers keep in touch easily with the person they care for, either directly or via a monitoring centre. These devices can offer reassurance to families and offer peace of mind if an emergency were to arise.
Many carers in Hampshire struggle to get ‘Take a break’ services because of a lack of supply of appropriate services. Some rural areas have no coverage. Carers who cannot source these services can receive a care technology installation to help them manage. This may include, for example, sensors that alert via a mobile pager so that they can sleep or go out for short periods and be alerted if needed. Argenti receives and supports two or three new carers each month in this way in Hampshire.
Early diagnosis of dementia in Hampshire leads to a referral for care technology through Dementia Advisors. Argenti installs care technology as early as possible to encourage use and delay needs escalating to keep people as independent as possible. Over the last three years, 1,904 referrals for the service have been made, of which 1,174 were made partly to reduce carer stress to keep the person at home. There are currently 1,282 live connections.
Eighty-four per cent of carers report working less, and 60 per cent are more able to pursue their own interests and socialise because of their relative or friend’s telecare.
Argenti also offers all private pay customers access to the Carers UK portal as an additional service to support them in their caring role.
Argenti and Hampshire County Council ran a project trailing the use of Alexa (voice controlled service) for 50 eligible people in 2018. The project indicates significant impact on feelings of independence, isolation and connectedness; and reduction in carer breakdown risk.
Two participants saw a direct reduction in costs of care at a total value of £5k p.a.
Contact Steve Taylor, PA Consulting
Call and Care Open
Provider: Dementia Concern (voluntary sector)
This is a home-based carers' respite service for people living with dementia and their carers from all communities within Ealing, which is a diverse borough. It is rated ‘Good’ by the Care Quality Commission as staff are able to assist with personal care as needed.
Dementia Concern, which is a voluntary organisation, has run dementia services for 25 years. Carers are offered a weekly break of at least three hours on a regular or occasional basis. Staff provide stimulating activities in the person’s own home environment or take them out for walks, social activities, or to pursue hobbies and interests. Activities are tailored to meet the needs of all community groups, respecting their cultural and religious requirements.
Every family accessing the service knows when and where they will receive the service and has a ‘short break plan’ detailing the frequency, duration and type of short breaks available.
From April 2019, the Call and Care service will be funded by fees paid by individual carers and people living with dementia and partial funding from Ealing Council.
The service is co-produced with people who use services and carers in terms of agreeing hours and days of the respite break. A care plan is individually tailored to meet the needs of the person living with dementia to take into consideration their needs, wants, preferences and aspirations. Regular feedback from services users and carers is requested via surveys, consultation events and a newsletter to inform them about improvements and developments.
Funding: The annual cost of the service is £280,000
Provider: Carefreebreaks (charity)
Carefree is a national charity, set up in 2017. The programme aims to offer every full-time unpaid carer in the UK the chance of an annual short break by partnering with the hospitality industry to donate its excess capacity, estimated at 140,000 vacant rental rooms per day. Carefree conducted research into the carer and hospitality sectors before agreeing eligibility criteria for these carer breaks, and ran four Cornish trials prior to incorporation to test the business model.
Over the past 18 months, Carefree has focused on building and piloting an online-booking system to manage referrals from carer support organisations (CSOs), gifted accommodation and carer reservations.
To date, Carefree has leveraged over £126,000 of gifted accommodation, which offered just under 750 three- or seven-night short breaks across Cumbria, the South West, South East and Scotland to 1,000 full-time, unpaid carers referred by 41 local CSO partners. The accommodation is provided free of charge and carers pay a £25 administration fee towards Carefree’s operating costs (which can be subsidised by the CSO referring them).
From national pilots, 85.5 per cent of carers rated their wellbeing as significantly or notably improved after a break, and 84.5 per cent said they would not have been able to access any break at all without Carefree. Consultation has also focused on understanding the digital user needs of the carers better and how to improve their user journey on the web.
Their next step is to work with local authorities to test a self-enrolment system to enable carers from hard-to-reach regions, to access this service directly. They aim to launch a fully automated platform in 2020 and will be conducting intermittent pilots until then.
Carefree believes that this ‘sharing economy’ model can bring significant benefits for creating a more sustainable social care sector, by leveraging the excess capacity of the hospitality industry to widen carer access to short breaks without the burden of cost falling to the public sector.
Carers sitting-in service Open
Provider: n-compass North West Ltd (not-for-profit organisation)
n-Compass North West provides carer support services in Lancashire, Cheshire East and Rochdale. It delivers a range of activities that enable carers to take a break from their caring role, including supporting around a hundred carers per month through a sitting-in service which enables the carer to take a break whilst they provide a volunteer to sit with the cared-for person. It delivers around 35 community-based Coffee and Chat groups each month which provide peer support to carers. It also delivers training opportunities for carers through local colleges, and a 24-hour chat line for carers which is delivered by 12 volunteers.
n-Compass North West takes feedback from carers who attend these opportunities and through a quarterly newsletter sent to all carers it supports. In addition, it has a Citizen Involvement Board which includes a number of carers/former carers. This Board is chaired by the CEO who feeds back to the Board of Trustees
Dementia Adventure Open
Provider: Dementia Adventure (Charity)
This charity started ten years ago to help people, mostly in the earlier stages of dementia, and their carers get outdoors more, connect with each other and their communities. It offers supported group holidays as an alternative model of respite, designed so that partners can stay together and support each other. To date it has provided over 100 holidays and in 2018 it helped c 200 people have a break they would not otherwise have had. It engaged focus groups and ongoing service improvement from the beginning, regularly takes on feedback from clients, and has a special interest group that is part of its governance structure.
The impact data it gathers includes carers’ and users’ perceived increase in happiness, feeling more physically able, greater confidence to go outdoors etc before and after the holiday.
It employs a small team of 18 staff supported by over 100 volunteers.
Budget: The organisation has a turnover of about £800,000 a year of which about a third is associated with the holidays. The charity is funded in part by People's Postcode Lottery, some income from clients, individual donations and through training and consultancy work. This enables the organisation to heavily subsidise at least one holiday a year.
Provider: Milestones Trust (not-for-profit organisation)
Fairburn is a registered nursing home providing short residential breaks for adults with learning and physical disabilities in and around south Gloucestershire and Bristol. It has been established for over 25 years and has seven beds. The service enables individuals to have time away so all family members can get a break. It provides support to families and carers with continuity of care for the cared-for adults. It currently support 38 families. The team has the equivalent of four full-time nurses, eight full-time support workers and one home manager.
Its services have adapted over the years. It has provided breaks which have avoided families going into crisis or having hospital admissions. It supports individuals to enhance their independent living skills whilst away from their home. It also encourages opportunities for social integration within the local communities. It provides networking opportunities for families and professionals, and advice on advocacy/ transitional services/ health issues. All participants have outcome-focused support plans which cover health and wellbeing. It is person-centred to ensure that continuity of care is provided. It works closely with family and other professionals to ensure the support being provided is right for the individual and the flexibility of the service recognises the individuals’ needs, wants and wishes.
Funding: It is funded via Block Bed from local authorities, as well as CCG funding and personalised budgets.
Revitalise Respite Holidays Open
Revitalise provides holiday-style respite breaks for disabled people who need 24-hour nurse-led care and their carers.
The service provides around 4,500 short breaks each year at three UK centres.
With 55 years’ experience, 97 per cent of guests rate the care and service they receive as good or excellent. As they look to expand their services they aim to become world leaders in leisure services/social care for disabled people and carers. Revitalise run the largest residential volunteer programme of any UK charity, with over 1,200 volunteers from across the world each year. The volunteers form a crucial part of the Revitalise team, and guests report that the relationships they form with the volunteers makes their break special. At the same time the volunteers, 90 per cent of whom are aged between 17 and 25, gain in confidence and experience.
Volunteers 2017/18 = 1,251
Staff (as of December 18) = 284 employees (227 permanent)
Guests pay cost-price for their stay, and pay only for their specific needs rather than a general level.
Revitalise also partners with The North West Regional Spinal Injuries Centre to provide breaks to patients from the centre, which has seen patients discharged significantly faster, and in the first year of the scheme it saved the NHS North West almost £2 million.
Revitalise’s own research found that: 96 per cent of their guests and carers think proper breaks away are essential to sustaining a good caring relationship; and 50 per cent of guests said a Revitalise break did or could have prevented their relationship from breaking down.
Revitalise regularly consults with guests on specific decisions, and includes guest representation in its governance through their participation in Trustee Committees which feed back to the Trustee Board. On an operational level Revitalise also speaks to guests in advance of their breaks, to make sure care plans are tailored and robust, and to learn about what they hope to get from the break and what they enjoy, to tailor elements of the break to them whenever possible.
Funding In 2017/18 income from various sources including charitable activities: £9,682,000, Expenditure: £9,542,000
Kingham Cottage, Bath Open
Provider: After Umbrage (charity)
Founded by a former carer, After Umbrage is a small charity established in 2013, offering short holiday breaks for carers and their families. The charity offers the accommodation at Kingham Cottage free of charge for up to four nights for anyone who has been looking after loved ones with a life-limiting condition. Each applicant is allowed up to three stays including time for those recently bereaved.
After Umbrage, run by three part-time members of staff, hosted 37 families in 2018 and a record number of referrals have been received this year to date. In recognition that caring impacts siblings too, it is proud to support the whole family, not just the carer.
Last year, the beneficiaries provided quantitative and qualitative information on the social impact of the charity. It asked beneficiaries to rank their wellbeing before and after their visit. Before they arrived, the average score was two out of five (with five being high). They said they felt tired, their energy levels were low and they were not feeling their best.
After a four-day break the average score was 4.5 out of five. When asked to put these feelings into their own words, and to describe the impact on them of their stay they said, ‘an ever-lasting memory of us as a family and a lovely break away from the stress of hospital appointments and daily life’.
Funding: The cottage is also hired commercially to paying guests, with 100 per cent of their hire fee going towards offering the service free to carers. The cottage is leased to the charity for £2 a year and it fundraises to cover refurbishment and upkeep costs. The National Lottery Community Fund has covered marketing costs for two years.
Shared Lives Open
Shared Lives offers adults the opportunity to use small-scale, family and community-based support to meet their care and support needs. Shared Lives is used by people of all ages from 16 onwards, with a wide range of difficulties. Support is offered through Shared Lives carers, who share their own homes and family life offering long-term live-in arrangements, short breaks or day care. Short breaks can be anything from a few hours a day on a regular basis to overnight stays for an agreed length of time. Time is spent making sure that the match between the service user and the Shared Lives carer is a positive one. At the heart of Shared Lives is the relationship between the person using the service and the Shared Lives carer and their family.
Shared Lives is funded in the same way as other forms of short breaks. The local authority will undertake an assessment for the person being cared for and their carer. This will look at the needs of the person being cared for and consider what services they may be able to provide bearing in mind local priorities and availability of services. They will also do a financial assessment which means that the family carers or the person being cared for may be charged for the services according to means. Charges vary according to the area and the support needs of the person using Shared Lives.
In 2015–16 Shared Lives participated in the Carers Social Action Support Fund project funded by the Cabinet Office which explored different way to support family carers. The evaluation of the project, undertaken by TSIP, showed that using Shared Lives for short breaks provided a reduction in caring stress and in the likelihood of breakdown and an improvement in wellbeing. (TSIP 2016)
Short Breaks Open
Provider: Silva Care Ltd
Silva Care Ltd runs five short breaks houses for people with learning disabilities, each catering for a maximum of five people staying at one time, and each house has a specialism (e.g. supporting people with complex physical and health needs, supporting people who have behaviours which may challenge). Silva also provides community Outreach and its short breaks services have grown organically in response to the needs of the people it supports. As each house has become fully utilised, the organisation has looked to develop another service where identified needs were being raised in person-centred planning meetings, and school reviews for young people preparing to transition to adult services.
Each house offers a personalised service with one-to-one or one-to-three support and staff are trained to meet individual needs including: autism, sensory sensitivity, MAPA, communication and Makaton, plus various health conditions.
Stays will vary so some people stay a regular night per week, a weekend a month, or for holiday breaks. As well as supporting families and enabling family carers to have a break, the service aims to be a home from home and an opportunity for the person staying to have social opportunities including cinema, pub, music venues.
Before the first stay, Silva arranges tea visits and takes the person shopping so they can choose their own bedding and towels. This is funded by the service, but will remain personal to the person staying and will not be used by anyone else. The stays also support people to develop independence skills – for example, one of the houses specialises in supporting people looking to move on to independent/supported living.
In terms of lessons learned, Silva has found that it has been important to develop positive relationships with local GPs and health professionals to ensure ongoing health needs can be met during a person’s stay. It has also had to be reactive to the changing needs of the people it supports and now keeps one emergency bed as families wanted to know that it could provide emergency stays rather than just planned stays. Silva is not funded on the bed block; so this expense is carried by the organisation.
As it supports people to move in to supported living, it has adapted and set up supported living services. This has enabled people who already access services and have developed friendships to move on together in a planned way with support from staff they already know.
Silva has regular service user core group meetings to discuss service delivery and also quarterly parent/carer forums. Before opening the last service, it organised a joint meeting with people interested in using the service and their families to view the proposed property, and input ideas on the environment, type of service provision, allocations and if anyone had preferences, for example, if they wanted their stay to be at the same time as existing friends also accessing the service.
Budget: Each care service has a separate budget
Website Silva Care
Contact: Sharon Moore, Registered Manager/Director, Silva Care Ltd
Time for You Project, Bury Open
Provider: The Fed volunteer service
The Time for You Project, based within The Fed’s volunteer services, supports carers in the North Manchester Jewish Community. The project has been providing this culturally appropriate service to carers for over 20 years. It aims to provide carers with a much-needed break from their caring role.
The Fed recruits, trains and supports volunteers who sit with or take out the person being cared for, enabling the carer to have some time away from their caring responsibilities. Potential volunteers are interviewed, DBS-checked and two references are followed up. Volunteers have to complete full induction training which includes the role of the volunteer (including their rights and responsibilities), confidentiality, boundaries, safeguarding, no response guidelines, moving and handling. Volunteers are also offered training on dementia awareness, first aid, working with mental health and more.
Referrals for this service come from social workers, GPs, other organisations and self-referrals. The clients who receive the support are caring for people with a wide range of vulnerabilities and needs e.g. a daughter caring for a mother with MS, a gentleman caring for a brother with severe mental health challenges, a wife caring for a husband with dementia and a friend caring for someone with Parkinsons. Two part-time coordinators assess the needs of each new client by visiting the carer and cared-for person in their home and completing an assessment form for volunteer services. A full risk assessment is carried out for each situation.
This bespoke service is tailor-made to meet the individual needs of carers with a view to providing the best possible service and the most appropriate volunteer match. The service aims to give carers a life of their own alongside their caring role.
Depending on the need of the carer and the person they care for, coordinators give information to carers about other specialist services (e.g. Age UK, Alzheimer’s Society, Dementia Care Advice, Cancer Care, Parkinson’s Society, Meals on Wheels).
The coordinators then match volunteers to clients. Volunteers visit their clients on a regular weekly or two weekly basis depending on the needs of the carer. The coordinators oversee the work of all the volunteers and support and supervise them regularly. The coordinators are also in regular contact with the carers and cared for by telephone support, visits or re-assessments. At any one time, the Time for You project supports approximately 50 caring situations in Bury on a regular basis.
This service is helping to reduce social isolation. For some receiving this service, the volunteer is the only person they may see on a regular basis. Providing carers with regular planned breaks enables them to have a life of their own alongside their caring role, allowing them to take up opportunities in social, leisure, education, etc. Knowing that there is a regular volunteer who is there to befriend the person they care for, gives carers peace of mind. Carers often mention that the service contributes towards their general wellbeing, helps to alleviate stress and improves their quality of life.
Budget: The contract value from Bury Council is £19,300 The Fed also fundraises to help cover most of the running costs that are not directly staff-related, this includes costs of maintaining IT, admin, supervision, insurance, and the office.
Consistency of relationships – and therefore continuity of staff – is important to build trust.Carers’ Breaks Reference Group discussion, February 2019
Workforce development and skills
Skills for Care and Skills for Health have set out key standards and requirements for staff working in care settings. For those working in breaks services or services that offer breaks as part of wider provision, specific approaches and skills may be needed.
The episodic nature of breaks means that communication is absolutely key – so staff who might not see someone every day can quickly adopt the right approach and understand how someone wants to be supported.
Carers may need reassurance to feel able to use a breaks service or trust someone in their home. Really valuing their approach and listening to what carers do can ensure continuity of support. Kindness is highly valued. Staff need to be confident so as not to be always calling on the carer – but need to be able to make judgement calls as to when it is right to do so.
Specific skills and knowledge may be needed to ensure appropriate support for people with specific needs or conditions such as dementia or mental health needs.
Providers will need to ensure their training addresses the specific range of needs of potential users of their services.
Providers can usefully develop collaborative workforce plans and liaise with other providers to make training more affordable. Skills sharing may be a useful approach. Funding may be available for local training consortia. Linking with the statutory sector can mean access to more varied and affordable training. What does the local mental health trust offer? Does the local authority or NHS have training on autism, for example, or can shadowing be offered?
Involving carers in training delivery is an excellent way of raising awareness and fostering good relationships. Training delivered by the local carers organisation may provide invaluable insights.
More innovative approaches will attract a workforce from a wider range of skill sets and backgrounds. Shared Lives arrangements are delivered by community members from all walks of life. Breaks that are based on access to shared activities, such as My Time, pull on a wider workforce engaged in the scheme or might seek to attract people, perhaps volunteers, with particular interests – a football fan, a tennis player, a theatre goer.
Look at offering a choice of breaks. Be flexible about what is possible, including when the break can be arranged.Carers’ Breaks Reference Group discussion, February 2019