Practice examples - adult carers
These are examples of practice from organisations that are currently running respite and breaks for people who use services and carers. These examples are included to encourage reflection and innovation. Inclusion does not mean formal approval by SCIE.
Argenti Care Technology in Hampshire
Providers: Hampshire County Council and PA Consulting Open
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 – home-based respite in Ealing
Provider: Dementia Concern (voluntary sector) Open
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
See: Providing breaks
Carefree – annual short breaks in UK in partnership with hospitality industry
Provider: Carefreebreaks (charity) Open
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.
See: Providing breaks
Carers Holiday Lodges – Council-owned lodges in Bournemouth and Poole
Provider: Bournemouth Borough Council and Borough of Poole (Council-owned service) Open
This is a local authority-led project. Carers in the two boroughs were asked if they would be interested in having a break in a lodge at a holiday park. Following positive feedback, the councils purchased lodges with money from what was then the primary care trust. They involved a carer in the selection of the first lodge in the seaside town of Brixham in Devon. The second lodge was in Weymouth in Dorset as some carers could not travel to Devon. This lodge was specifically designed to be more accessible and dementia-friendly, as carers usually took the person they cared for.
Between 2016 and 2018, over 300 carers had breaks at the two lodges. The services receive regular, positive feedback from carers describing it as 'a breath of fresh air', 'a chance to renew my batteries'. Holiday park staff are seen as especially helpful. Both parks have bus stops near to the entrances so that there is easy access to local leisure facilities.
As part of the project design, carers agreed to a highly reduced 'booking fee' of £10 per night, as a way of contributing to the cost.
Funding: c £25,000 p.a. to run both lodges.
See: Market shaping
Carers sitting-in service
Provider: n-compass North West Ltd 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
See: Providing breaks
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.
Adult Respite Support – Review and codesign of services
Cheshire East Council Open
In 2017/18, council commissioners embarked on a 12-month review of their current service, talking to service users and carers, with the aim of creating a modern respite service to meet the varying needs of Cheshire East residents. It was apparent that for some people, the bed-based support was a lifeline; however, it was clear that it was not appropriate for others.
Co-production was at the heart of the re-designed service including one-to-one meetings, group meetings, an online survey (with support available via telephone to complete), and a direct survey being shared with local carer groups and forums. Recommendations based on the evidence collated were presented to service users, carers and professionals. This was then used to inform the specification for a new service.
One outcome of this was the Carers Hub offering information, advice and guidance and a 24-hour chat line manned by other carers with access to community, health and wellbeing services. The Hub offers a dedicated carers support worker specialised in fields such as young carers support and dementia.
The Community-based Respite Support service was launched in January 2019, offering a range of different services including a sitting service, support to access employment or volunteering support and employment-related skills, daytime opportunities and residential respite support. Residential bed-based support has been maintained and the range of different bed types available to support individuals’ different needs has been extended.
It is too early to assess the overall impact of the newly co-designed range of respite support services. However, the Carers Hub was launched on 1 April 2018 and the following feedback has been provided:
You and your service make my life more bearable. You are always there for me to talk to. It helps me to cope as a carer, in what are sometimes difficult situations.Female Carer, aged 75–84
I think the service is amazing. It lets the children be children and not have to worry or be carers. It also lets them make friends. The kids love it and there is always someone there they can talk to.Parent of two young carers
This service has allowed my pupil to no longer feel isolated and that no one else understands. He is now engaging in fantastic opportunities and thriving on the care and understanding given.Head teacher, primary education
Funding: £1.1 million per year (Carers Hub, Community and Bed-based support)
Dementia Adventure – Supported group outdoor holidays
Provider: Dementia Adventure (Charity) Open
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.
See: Providing breaks
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
Fairburn – Residential short breaks for adults with disabilities
Provider: Milestones Trust (not-for-profit organisation) Open
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.
See: Providing breaks
Family Carers’ Prescription – Access via GP to Carers Trust worker
Provider: Caring together Open
A Family Carers’ Prescription (FCP) gives carers of all ages, including young carers, access a specialist worker at Caring Together who will discuss the support options available, support the carer to access them and give them an information pack. The worker supports the carer to design a short break that works for the carer and they also provide support for this break to happen. The carer decides what gives them a break – it may be assistance going out with the person they care for, someone being with the person they care for whilst they do something or it could be something else. Carers access the ‘prescription’ through their local health professional, including GPs, or directly via Caring Together who will then liaise with the GP on their behalf.
This service was commissioned to prevent carer breakdown based on evidence that this was the biggest cause of avoidable hospital admissions. The aim is to prevent unnecessary admissions to hospital and/or permanent care and to raise awareness. Originally commissioned to provide care/emergency breaks and to support carers to attend their own health appointments, they recognised that other breaks and support for carers are equally important. They adapted the service to enable more tailored solutions (comparable to a personal budget approach), with support available to meet the needs of the whole family. They introduced help with planning ahead in case of an emergency and, adapted the service to enable a broader range of health professionals to prescribe, not just GPs (e.g. community-based practitioners). As a result the service is now more preventative, with earlier identification, not just crisis response.
Examples of family prescriptions include Kieran, who is 6 and helps care for his sister who has cerebral palsy. Due to his sister’s deteriorating condition, his mum had to give up work. The financial impact of this meant that they also had to give up the weekly swimming sessions which impacted on Kieran’s mental health. The FCP funded Kieran and his mum to go swimming together as their break.
The FCP has been used to help support carers where they have their own health needs. For example, one young adult carer was struggling with her anxiety and was becoming very isolated at home. She loved reading and so an FCP paid for her to purchase books from a local charity book shop – this supported her to get out of the house more as well as purchase books to help her to try and relax at home.
Surveys indicate that over 95 per cent of those using the service would recommend it to a friend or relative. Eighty-nine per cent said they were less stressed or anxious. Eighty-eight per cent said they coped better with the caring role. Carers said they benefited from: replacement care being supported to access a flexible break by attending a carers hub; accessing emotional support or being supported to access an activity to promote health and wellbeing such as relaxation therapies.
The estimated saving through avoided hospital and residential admissions was £1.7 million in 2018/19. These figures do not take account of the additional potential savings associated with the prevented admission of the person they care for, nor those associated with maintaining either individual’s physical, mental, or financial health or wellbeing as a result.
Feedback forms are issued after each home visit and follow-up phone calls are scheduled to review, and to give a measure before and after the intervention. Feedback through other services highlighted the need for a lighter touch carers assessment, which has also been introduced and carers were involved in the development of this.
Budget £400,000 pa.
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
Give Them a Break Campaign – Fundraising campaign for carers’ breaks in South Lakeland
South Lakeland Open
South Lakeland Carers identified through carers groups and one-to-one that carers who were not eligible for a County Council Budget were finding it increasingly difficult to have a break from their caring role. This holiday/night away did not always fit with carers’ circumstances. So it initiated a campaign in conjunction with the local newspaper to raise awareness of the carer’s role and asking local people and businesses to donate to the Give Them a Break Campaign which raised £20,000 to enable 200 carers to access a 'break' from their role. The monies raised by this campaign will be used by February 2020.
As yet the service has not been evaluated.
Budget £20,000 to be used by February 2020.
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.
Kingham Cottage – whole-family holiday home in Bath
Provider: After Umbrage (charity) Open
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.
See: Providing breaks
Leominster Meeting Centre – day time activities for people with dementia and carers
Provider: Leominster Meeting Centre Open
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.
See: Providing breaks
Mytime – Breaks in partnership with hotels, leisure services, restaurants etc in Liverpool
Liverpool Carers Centre, Local Solutions (not for profit) Open
Evidence from carers accessing the Liverpool Carers Centre showed that the most requested type of support was a respite break. Demand in the city was outweighing supply so the Centre looked at how best to respond this request. Contact was made with a hotel and it offered complimentary bed and breakfast for a carer and a guest.
It now has 30 hotels and 32 other organisations providing offers to carers. This includes overnight stays in hotels, and access to restaurants, theatres, universities, leisure and tourism, football clubs, watersports centre and Aintree Racecourse. Some carers are unable to leave the cared-for overnight so Mtime worked with organisations such as theatres/restaurants who could offer a few hours during the day. There are 1,300 carers now registered with Mytime, which is run by 1.5 paid members of staff plus a manager and two volunteers who were themselves carers. Carers chose the name and design of Mytime. They are also involved in the development of offers. This project was recently recognised by Nesta and the Observer as one of their ‘New Radicals’.
Mytime supports the whole family. Examples include breaks that are family orientated, to allow parents who are carers to be able to take their children on the break. This could be family concerts at theatres where children are encouraged to come and try the instruments, or using tickets provided by CBBC (Children’s BBC) to see their roadshow. Many families that have young carers enjoy pantomime tickets, something that they can enjoy together. There is support available for families who are caring for someone with dementia to take them to the event and help to make a memory.
Evaluation gained from the project shows an increase in carers health and wellbeing. This is evidenced by the Warwick and Edinburgh Mental Wellbeing Scale. They also use the carers outcome star to assess the carer pre and post activity. Carers are reporting back that the services have helped them to remain in their caring role.
One of the key lessons they learned, was that some carers are unable to leave the person they care for overnight so they worked with organisations such as theatres and restaurants that could offer a few hours of activity to carers during the day, such as Barista training.
Budget: Approx £80k per annum. At present the service is funded through the Big Lottery Fund and other charitable trusts.
For meals, everyone is asked if there are any food requirements to be aware of.
There is a carer who has been supported via the project volunteering for us. She is able to speak several languages and last week used this to support a carer whose first language was Punjabi access a break. The volunteer is keen to provide more of this type of support for carers.
The aim is to make Mytime as inclusive as possible and work on an individual basis to reduce any potential barrier to a carer being able to access a break.
Residential breaks for carers of younger people with dementia in West Sussex
West Sussex County Council Open
The impact of caring for people with young onset dementia on families can be particularly challenging as carers may be younger, have work commitments, or have the added responsibility of dependent children and ageing parents.
West Sussex needs analysis revealed that family carers struggled to find appropriate residential respite. Nursing and care homes were not always equipped to meet the needs of younger, more active people and so many carers were reluctant to use these to give them a break from their caring role.
Based on these findings, a pilot to test the feasibility of a short break service for carers of younger people with dementia was commissioned. Family carers and younger people with dementia were invited to two separate focus groups to help shape and inform the service and a full itinerary for the break was co-produced with the participants. The pilot took place over one weekend in March 2017. Following a successful pilot, a service was commissioned to run two short breaks twice a year.
The breaks take place over one weekend in the spring and autumn (one night stay). To date, there have been four short breaks that have supported a total of 30 family carers, with some family carers attending more than once.
The carer and the person with dementia can attend together or the family carer and the person they care for is welcome to attend individually.
Each short break can accommodate around 20 to 25 people but this number is dependent on the level of need. The short breaks take place at Roffey Park Conference Centre – a local not-for-profit residential establishment. Crossroads Care South Central provides care, support and entertainment for both the people with dementia and their family carers throughout the weekend. Crossroads also organises the breaks, conducts pre-assessments and supports people to complete their evaluation questionnaires at the end of the weekend. One or two waking night staff are in attendance overnight.
Carers Support West Sussex offers information and advice as well as emotional support to carers throughout the break. It also provides relaxation sessions and an art workshop. A volunteer dementia-friendly swimming instructor provides support for people in the pool and organises water-based activities. A volunteer therapist offers holistic therapies as free taster sessions.
British Red Cross offers free hand massage and a relaxation class to individuals and carers. Sussex Community NHS Foundation Trust’s Carers Health Team offers free health checks and advice for family carers.
Seventy-four people, including 30 family carers, have been reached through this service since its inception.
According to the evaluation of the pilot, all participants had achieved what they wanted from the break. They welcomed the opportunity to learn new skills and re-visit old ones, and carers appreciated the opportunity to participate in joint activities with their loved ones, and reported improvements in their relationship with the person they cared for.
Funding: The short break takes place over two weekends per year. The indicative annual budget is £10,000: £3,000, for care costs and £7,000 for accommodation and activities. A contribution of £95 is requested from each participant towards the cost. Feedback from participants on the first pilot weekend suggested this would be a realistic, affordable contribution and this charge has not proved to be a barrier. Total costs vary depending on the exact number of participants attending (usually around 20) and the ratio of carers and cared-for.
Residential support for people with learning disabilities, autism and behaviour that challenges – Cheshire East
Commissioner: Cheshire East Council Open
Cheshire East Council recognised that adults and children over 16 with learning disabilities and/or autism who may also display behaviour that challenges (including those with a mental health condition and/or a physical disability) were often unable to access appropriate respite care within the borough. Evidence showed that existing services were often unable to meet these more complex needs, resulting in many people having to use respite in out-of-borough placements, which often did not offer best value for money.
In April 2018, the council hosted a series of consultative group meetings, issued easy read surveys and attended meetings with people who use services and their carers. Results showed that carers valued accommodation-based respite away from the family home, in order to give them a break from their caring role, safe in the knowledge that the person they cared for was in a safe environment with appropriately skilled staff. The survey also informed commissioners that service users wanted to undertake activities to develop their independent living skills and to be able to go out into the community.
A soft market testing questionnaire was issued in August 2018 to gauge interest from the local and wider provider market. This helped commissioners in understanding the potential interest and ability of providers to deliver such a service within Cheshire East, especially to support those individuals who may display behaviour that challenges.
In September 2018 the council invited tenders from potential service providers, who could evidence that they were able to provide community-based accommodation and could demonstrate that they would provide skilled support. The successful bidder was a provider called 1st Enable.
The service – provided by 1st Enable - was opened in January 2019. The service model consists of four beds (two beds in the south and two in the north of Cheshire East and included the flexibility for additional one-to-one/two-to-one support for those with complex needs). At this stage it is too early to evaluate the new service. However there have been early indications that the service provision is able to support complex individuals and that evidence of good outcomes have been achieved (with service users developing independent living skills and accessing social activities in the community as part of their respite stay).
The respite service ensures that people’s diverse range of needs are understood and supported right from the start of their stay. This process begins before they even arrive, by reading their initial assessments and meeting individuals and their families. Examples of this include helping a young person to their regular place of worship; helping them to remain an active member of their religious community during their stay. In another example a young person on a long-term placement required their hair and beard cutting. Staff supported them in visiting an ethnic hairdresser. Prior to the visit, staff went to the hairdressers and spoke to the barber to ensure they were able to cater to the person’s learning difficulties. At the visit, staff ensured that the individual was able to choose their desired hairstyle using photographs, alleviating the stress of them having to speak.
Diverse cultural backgrounds are also taken into account in the day-to-day activities at the service. Individual menus are created for each person, ensuring they include their cultural foods, as well as taking into account religious, ethical and dietary needs. The service has several kitchens available for use, ensuring that we can accommodate food that must be stored and cooked in specific ways, for religious and dietary reasons. Themed nights provide an opportunity for people to have a taste of different cultural foods from around the world, giving them a more diverse experience during their stay.
In terms of lessons learned from the commissioning process, it was felt that more time should be given to the service provider for the development or modification of accommodation, the recruitment of skilled staff and to provide greater clarification around CQC registration process. Site visits by the council should also take place as part of the tender evaluation in future.
Funding: £170,000 pa.
Inclusive commissioning – Review of Kingston upon Thames respite services
Royal Borough of Kingston upon Thames Open
The Royal Borough of Kingston is currently reviewing its respite services to ensure that carers have access to a variety of respite options. It is piloting an inclusive commissioning approach to ensure that the council and the market is well informed as to what is working and what needs to be improved. It contacted over 350 carers and a consultation report was sent to providers via London Portals to help inform future contracts for respite services. Carers were also invited to participate in the Providers Forum so that they and service providers were able to discuss respite services together. By emailing and telephoning carers directly, and by going to carers groups in the community; the council was able to get good qualitative feedback about what was working well and not so well. This informed respite service design and the council’s commissioning plan.
The case for improving respite services is clear. Data showed that providing overnight and day services respite for 27 families generated a cost avoidance of over £1 million per year. This was calculated by collated the level of care these individuals would need if they were not living at home (chiefly residential or supported living placements) minus the cost of the respite service itself.
The council’s approach involves approaching carers before a commissioning plan for services has been developed, and having the consultation report inform the commissioning plan, engagement with providers, and the business case for developing respite contracts for tender. Carers will be directly involved in writing some of the contract specifications. These carers will also help evaluate provider responses to those specifications in their bids. Carers will be invited throughout the commissioning cycle to help review contract performance and further service redesign.
Budget £500,000 pa.
Revitalise Respite Holidays – Breaks in UK for carers and disabled people with nurse-led care
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 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
See: Providing breaks
Short breaks house for people with learning disabilities
Provider: Silva Care Ltd Open
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
Shared Lives – short breaks with Shared Lives carers who share their own home
Shared Lives Plus 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)
Time for You Project – Volunteer support to North West Manchester Jewish Community
Provider: The Fed volunteer service Open
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.
See: Providing breaks
Weekend Day Centre – Dementia Concern in Ealing
Dementia Concern Open
Dementia Concern is the only provider of weekend day care for people living with dementia in the London Borough of Ealing. It provides 100 day places across two locations. In 2017–18, it provided 27,471 hours of short breaks for carers for a total of 222 service users (128 people living with dementia and 94 carers). Currently Dementia Concern supports 1,119 people living with dementia and 920 carers.
The project provides a reassuring and friendly place for people with dementia to attend on a Saturday or Sunday and interact with others in a wide range of therapeutic activities according to their ability. As the only provider of weekend day care in the borough, it provides specific activities for people living with dementia at the two purpose-built centres, this includes meals which are culturally and dietary appropriate, a wide range of stimulating activities aimed at helping members to retain their skills, light physical exercise appropriate to the needs and abilities of members, and therapeutic activities to promote independence and enjoyment in a safe supportive environment.
Carers are also provided with information and advice about other services, opportunities and support, and sign-posted where appropriate.
The service is co-produced with carers and service users in terms of developing care plans and activities to suit their individual needs, wants and aspirations. Staff assess the person’s needs and create a care plan to ensure that activities are stimulating, appropriate and life enhancing for each individual. Annual satisfaction surveys and regular consultation events ensure that Dementia Concern understands the changing needs of service users to improve and develop useful and valued services in the future.
Budget: £255,000 per year (2019–20)
Holiday activities, groups and funding sources for young adult carers
Swindon Carers Centre Open
Swindon Carers Centre was established 23 years ago to support young carers, young adult carers, parent carers, and adult carers. The aim is to improve the wellbeing of carers in Swindon,supporting carers carrying out a caring role for persons with a physical or mental health condition, a learning disability or a drug or alcohol dependency and to promote the development of self-help. This will enable carers to have a quality of life alongside their caring role.
Specifically, for young adult carers, it offers holiday activities, term-time groups, a young carer-led forum, access to possible funding to support their own interests or employment, education or training, and general advice relating to caring role.
A team of four support practitioners support over 900 young Carers in Swindon, which includes a support practitioner working solely with young adult carers. Young adult carers are offered a transitions assessment once they turn 17 years old to ensure they continue to receive appropriate support and remain engaged with the young carer service.
Historically, young adult carers tend to decrease in number once they leave school, however, the team is working at various ways to ensure young adult carers continue to be supported, by actively working with local sixth forms and colleges by regularly attending ‘drop-in’ sessions. The team also provides several yearly activities specifically for 15–17 year olds, to ensure this age group remains engaged and supported while transitioning through to adulthood.
Young carers and young adult carers are sent annual questionnaires to provide feedback on the support they have received, and these questionnaires are used to determine the types of support and activities offered.