Providing carers’ adult carers’ breaks

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.

Website Argenti Care Technology: Improving adult social care while reducing costs

Contact Steve Taylor, PA Consulting

See: National evidence base: What do carers want? and providing breaks

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

Website: Dementia Concern
Contact: Ade Adekola, Call and Care Manager

See: Providing breaks

Carefree is a multi-award winning digital charity, set up in 2017. Its mission is 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 1 million vacant rooms per week.

Carefree is currently partnered with 130 accommodation providers across England, Scotland, Wales and Northern Ireland, offering circa 1000-3000 donated room nights per month via its online carer break platform.

Full-time unpaid carers can gain access to the Breaks Hub through the organisation’s self-referral pathway or by being referred by one of Carefree’s 100+ Community Partners nationwide spanning Local Authorities, NHS Trusts and hyper-local carer support organisations.

This network reach ensures that the organisation is able to make the break offer available to a diverse array of carers from different backgrounds and more hard to reach groups. For example, in addition to working with the likes of Somerset NHS Foundation Trust and Leicester County Council, Carefree is receiving referrals from organisations like Bikur Cholim, a North London organisation supporting people of the Orthodox Jewish community and Milan Senior Welfare Organisation who support 50+ older people from Indian, Pakistani, Bangladeshi and Mauritian Communities in Edinburgh and Lothian.

97 per cent of Carefree’s Community Partners say that Carefree have increased access to breaks in their area, also giving the organisation an average score of 9.4/10 for their experience of working with them. Two-thirds cited strengthened voluntary sector delivery as a key benefit of Carefree’s work.

There is a £25 admin fee towards the operating costs of the charity for every break booked by a carer which can be paid for by the referral partner, the carer or sponsored by a member of the public.

The organisation has grown from 2,400 to 5,000 service users in the last seven months and 758 have accessed a break, which has had a huge impact on their lives: 92 per cent say they wouldn’t have been able to take a break without Carefree, 94 per cent stated that their wellbeing improved and 88 per cent also said they felt less socially isolated following their break.

Website: Carefree
Contact: Sarine Sofair, Community Partner Manager / Peter Causer, Director of Sustainability and Impact

See: Providing breaks

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

Website: n-compass North West: Carers Support
Contact: Steve Varley, Carers Service Lead

See: Providing breaks

Dementia Adventure started in 2009 to help people with dementia, and their families and friends to get outdoors and experience the benefits of nature. It offers supported group holidays as an alternative model of respite, designed so that people living with dementia, their partners, families, friends or carers can enjoy time outdoors together. To date it has provided over 164 holidays and provided 957 places for people to 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 user voice group.

The impact data it gathers includes carers’ and users’ perceived increase in happiness, feeling more physically able, with greater confidence to go outdoors after the holiday. Since the outset the charity has trained 17,384 individuals including people who support someone living with dementia, professionals working in a dementia setting, organisations offering outdoor activities or a green space.

It employs a small team of 22 part time staff supported by over 80 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, grant income, some income from clients, individual donations and through training and consultancy work. This enables the organisation to heavily subsidise holidays by 25%. If the subsidised cost of a holiday and transport is a barrier it asks people to get in touch for support so they can get the holiday they need.

Website: Dementia Adventure: Holidays
Contact: Catherine Reed, Head of Adventures

See: Providing breaks

Fairburn and Stibbs are both registered nursing homes providing short residential breaks for adults with learning and physical disabilities in and around south Gloucestershire and Bristol. Established for over 25 years, Fairburn has seven beds and Stibbs has 10 beds.

The services enable 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 supports 70 families and carers.

There is a nursing team that provides support across both services as well as a leadership team and a highly skilled support worker team.

Both Stibbs and Fairburn have provided breaks which have avoided families going into crisis or having hospital admissions. The service supports individuals to enhance their independent living skills whilst away from their home and encourages opportunities for social integration within the local communities. It provides networking opportunities for families and professionals, and advice on advocacy, transitional services and health issues. All participants have outcome-focused support plans which cover health and wellbeing. The support is person-centred to ensure that continuity of care is provided. Fairburn and Stibbs work 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 ICS funding and personalised budgets.

Website Milestones Trust: Short
Contact: Lizzie Jerome, Senior Operational Manager or Katharine Ford, Home manager

See: Providing breaks

Leominster Meeting Centre supports people with dementia and their carers to adjust to living with dementia by offering exercise, educational sessions, one-to-one meetings with support workers and therapeutic activities.

Family members use the centre as an opportunity for a break from caring or a chance to enjoy life together with the person they care for through social activities, classes and excursions and to gain support from peers. The centre is open four days a week. Staff and volunteers facilitate a flexible programme for both the person with dementia and the carer. The social club meets regularly with around 15 to 20 members every day. Sessions are built around the hobbies and interests of those who attend. Activities include: art classes, visiting hairdresser, movement and coordination classes.

Leominster Meeting Centre is one of ten centres in the UK. UK Meeting Centres Support Programme, led by the Association for Dementia Services, aims to set up between 15 and 20 more meeting centres across the UK over the next three years. The centres follow the ethos and concept of helping people to adjust to change but will vary in opening days and costs to attend. Further details are available at UK Meeting Centres.

Budget: £60,000 pa
Website: Leominster Meeting Centre
Contact: Joy Valentini

See: Providing breaks

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 welcomes guests with every kind of disability, over 150 different types. This approach to diversity extends to supporting disabled people of all backgrounds. For example, arranging trips to multiple places of worship. Revitalise supports guests who are LGBTQI+, and from different ethnic backgrounds. Volunteers come from all over the world, and speak a wide range of languages. The people supported by the service have different family and carer networks; they may be supported at home by their partners, their parents, their children or perhaps even their grandparents.

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

Website Revitalise Respite Holidays: Our impact
Contact: Andy Simons, Director of Marketing and Fundraising

See: Providing breaks

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. Carers are offered two stays of four days each plus one during the first year of bereavement.

After Umbrage has given over 300 free holidays to carers and their families and a record numbers of referrals are coming in. In recognition that caring impacts siblings too, the charity is proud to support the whole family, not just the carer.

Beneficiaries are asked to rank their wellbeing before and after their visit. Before they arrive, the average score is 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 is 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 endless hospital appointments and daily life”’.

Funding: The cottage is also hired commercially to paying guests, with 100 per cent of the proceeds from the hire fee going to the charity to sustain this service. The cottage is leased to the charity for £2 a year and it fundraises to cover refurbishment and running costs. The National Lottery Community Fund has covered marketing costs for several years.

Website: After Umbrage
Contact: Tracy Wilkinson, Head of Marketing

See: Providing breaks

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)

Website: Shared Lives Plus
Contact: Anna McEwen

See: Market shaping and Providing breaks

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 Care 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 Care 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.

Silva Care is committed to ensuring people are supported to attain their individual values and goals, by providing person-centred care which respects diversity; supporting people’s values, beliefs, cultures and lifestyles. Examples of this include: supporting people to attend places of worship during their stay, supporting and providing prayer spaces at appropriate times, and facilitating continuation of a regular bible class. Silva Care supports different dietary requirements, and this includes providing food preparation utensils which are stored separately, and meal planning with individuals and families. Silva Care employs a diverse workforce and where possible match people with staff appropriately; for example, Polish staff who support someone who only speaks Polish. The services celebrate different occasions and festivals throughout the calendar, and Silva Care has people who choose to watch specific TV programmes during their stay such as Hindi speaking series. The adherence of culturally appropriate personal care is also integral to this person-centred approach.

In terms of lessons learned, Silva Care 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 Care 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 Care 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

See: Providing breaks

The Time for You Project, based within The Fed’s volunteer services, supports carers in the North Manchester Jewish Community. The neighbouring areas of Manchester, Salford and Bury have the highest Jewish population outside of London, with 5.6 per cent of the Bury population identifying as Jewish (2011 Census). While the history of the Fed dates back to the 1800s, in 2000 The Fed merged with sister charity ‘Time for You’ to provide respite to family carers, enabling access and support to a community who would otherwise not do so through mainstream services. Drawing on a combination of local knowledge, cultural understanding, power to negotiate on behalf of their respective constituencies, the team is able to work with the community to develop a bespoke service that accommodates its wish to maintain a distinct sense of cultural otherness. 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 culturally appropriate volunteers who sit with or take out the person being cared for, enabling the carer to have some time away from their caring responsibilities. This gives volunteers, carers and the cared-for a real sense of belonging and engagement with the community they live in. 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 to enable them to support the diverse range of carers and people being cared for.

Carers receiving support come from a diverse range of ethnic backgrounds, religious backgrounds, family types, gender identities, physical disabilities and mental health needs. Carers and the cared- for span across the religious spectrum from very observant to people who identify themselves as culturally Jewish only. The Fed also provides support to many Holocaust Survivors and Refugees.

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. The volunteers relieve carers on a regular basis by sitting with the cared-for person, taking them shopping, out for a coffee or to medical appointments. 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.

The Fed receives regular feedback from carers, cared-for and volunteers about the impact of service on people’s lives. The Fed evaluates the service through regular supervision with volunteers and wellbeing calls with clients.

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.

Website: The FED
Contact: Caroline Malvern, Carers Engagement Coordinator, Bury Council

See: Providing breaks