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.
Practice examples of 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.
Contact Steve Taylor, PA Consulting
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 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.
See: Providing breaks
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
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
Provider: Carer Support Wiltshire (voluntary sector organisation)
Carer Support Wiltshire is a voluntary organisation commissioned jointly by the local authority and integrated care system to deliver assessment and support services to carers over 18. There are currently around 10,000 carers over 18 registered with the organisation, which supports adults or children. Carers are referred by a range of agencies and may self-refer. Each carer is offered the opportunity to talk about their caring role and how it affects their physical and emotional health and wellbeing, which includes the need to access breaks. Around 500 carers are assessed every quarter and each is provided with a personalised support plan to either maintain or improve their wellbeing either through access to services provided directly by Carer Support Wiltshire or other services local to the carer.
When it is identified that a carer might benefit from a break, the breaks are either delivered directly by Carer Support Wiltshire or accessed through external funding such as local authority funding via a Care Act assessment, community grants or small grant funding organisations. Break options include Carer Cafés run in local areas by volunteers, hobby groups, social or leisure activities or therapeutic treatments. Some carers also access a volunteer led ‘Here to Talk’ which allows carers simply to talk about themselves and take some time away from their situation.
Carer Support Wiltshire facilitates the Wiltshire Carers Forum. The Forum works together with commissioners and service providers to influence the development and delivery of services for carers and those they care for in Wiltshire. The forum ensures that the challenges faced by carers are clearly understood by those locally who make decisions that impact on them and the person they care for.
Carer Support Wiltshire employs 55 members of staff, complemented by 99 volunteers.
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 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.
See: Providing breaks
The Dementia Peer Support Group supports unpaid family carers from age five to no upper age limit, from the Swindon area. While most carers for those with dementia are adults, the Centre does also support a number of young carers who are supporting a relative with dementia. The service has more than 4,000 registered carers.
Following a full organisational review of inclusive practice and carer diversity in 2016, which is reviewed annually and includes an action plan, there has been an increase in the percentage of carers from different protected groups and from marginalised communities using the services. Strong leadership, organisational values and skilled staff were essential to this change which included being more reflective, more curious and reaching out to different communities. By picking up the phone, visiting neighbours, asking questions, sharing experiences and having open and honest conversations, doors opened and mutual trust and respect developed between the Centre and diverse communities of carers.
The charity also works in close partnership with a local dementia nursing home. Here trained care staff provide appropriate activities and support for the cared-for persons, while their carers meet in another room. We provide support groups, training, activities, benefits advice, one-to-one support, a counselling service, telephone support line, GP/outreach, end of life care support for carers and support post bereavement.
A person with dementia may not want someone coming in to sit with them at home, while their carer comes to a support group. So an approach was trialled where both carer and cared-for attend together initially, once settled undertaking appropriate activities with trained staff. This created a range of services, some of which are described below.
- Monthly Dementia Peer Support Group – Dependents meet in one room with paid/trained care workers to enjoy appropriate activities, (music bingo is a particular favourite!), and have some refreshments. Next door, carers can enjoy a cuppa and a period of respite, knowing that their loved ones are safe and happy. Numbers for this have been increasing. Carers can talk openly, ask difficult questions, cry if they need to and gain information and support from staff and their peers. Some fantastic friendships have been formed along their journeys.
- There is a similar set-up at the Silver Linings Group at Every Cloud Farmhouse, working in partnership with Every Cloud volunteers, plus a local care company. A therapy dog attends too plus a member of staff and a volunteer from Swindon Carers Centre. Dependents are supported to engage in activities while carers can have a period of respite, they may choose to walk in the lovely surroundings alone, in a group or stay and chat with their peers. A volunteer makes wonderful cakes to be enjoyed with a hot drink. There are places for eight couples here.
- Walk & talk events are held at a park/woods in Swindon. Carers and dependents stay together and are supported by staff and volunteers. Groups stroll for about 40 minutes along various pathways and depending on whether attendees are using a wheelchair or walking aid. The groups then meet back at the cafe for conversation and refreshments. This event is increasingly popular and, in all winds, and weathers, people choose to attend for fresh air and company!
Swindon Carers centre is part of the Dementia Action Alliance (DAA) and the Dementia Steering Group, with the aim of making Swindon a dementia friendly place. Various organisations were doing some great work but not everyone was aware of this, so a WOW Guide is produced (What’s On Wiltshire-Swindon) every two months which includes all events going on in and around Swindon in a calendar format.
Funding was historically provided by donations and grants from Carers Trust and TE Connectivity. In March 2019 it changed to work in partnership with a nursing home and the rooms being used there, the trained carers who support the loved ones, activity resources and refreshments are all paid for by the nursing home.
Website: Swindon Carers
Contact: Mrs Heather Goldsmith, Senior Groups & Activities Coordinator
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.
See: Providing breaks
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 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
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.
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.
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.
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.
See: Providing breaks
Evidence from carers accessing the Liverpool Carers Centre showed that the most requested type of support was a respite break. With demand in the city outweighing supply, the Centre looked at how best to respond. Contact was made with a hotel and it offered complimentary bed and breakfast for a carer and a guest.
The service 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 centres and Aintree Racecourse. 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 Children’s BBC to see their roadshow. Many families that have young carers enjoy going to the pantomime 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.
An evaluation of the service shows an increase in carers’ health and wellbeing using 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 that the services have helped them to remain in their caring role.
One of the key lessons Mytime 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.
Mytime support a diverse range of carers. For meals, everyone is asked if there are any food requirements to be aware of. One of the volunteers who is also a carer is able to speak several languages and, for example supported a carer whose first language was Punjabi to access a break.
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. Mytime is aiming to expand to other geographical areas and work with more commissioners.
Mytime has received four years funding from Liverpool City Council which gives stability to the project. Mytime Wigan has also been set up which was well-received by the commissioner in Wigan and was offered two years’ funding for the project.
Budget: Approx £80k per annum. At present the service is funded through the Big Lottery Fund and other charitable trusts.
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.
Cheshire East Council recognised that adults and young people 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, while knowing that the person they cared for was in a safe environment with appropriately skilled staff. Furthermore, people who draw on services 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, including supporting 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 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). The service has now been in place for the initial three-year contract period (December 2022) and a two-year extension in line with the contract has been agreed with commissioners.
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 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; 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 the CQC registration process. Site visits by the council should also take place as part of the tender evaluation in future.
The service has been able to support complex individuals, and there is evidence of good outcomes have been achieved with service users developing independent living skills and accessing social activities in the community during their stay.
The service remained active during the COVID-19 lockdowns but occupancy was severely affected with many people not wanting to utilise respite. As a result wellbeing calls and outreach provision was offered to provide carer respite.
A further success has been the increasing numbers of young people aged 16+ who have gradually began using the respite service. This has been a valuable support for the transition process into adult services, with people becoming more familiar with being in a supported living environment, developing new life skills and building relationships. The council commissioned an additional flat specifically for this age group.
The wonderful support your team have given my daughter, has enabled us to confidently leave her in your care. We have peace of mind, knowing that she is with people who are both capable and caring your service has given our family a much-needed break.
Mr and Mrs P
This was an excellent piece of multi-agency work in my opinion leading to an extremely positive outcome for this young person. The experience of staff and management at 1st Enable was invaluable in assisting ourselves to support this young lady during a period of crisis and eventually leading to positive outcomes moving forwards.
Funding: £170,000 pa.
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
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 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)
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
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)
Swindon Carers Centre was established 24 years ago to support unpaid carers aged five years and over. The aim is to improve the wellbeing of children, young people and adults with caring responsibilities in and around Swindon.
Specifically for young and young adult carers, who may be looking after a parent, sibling, or other family member/s who have a long-term illness, disability, mental health issues or drug and/or alcohol dependency.
The Young Carer team provide respite opportunities, through term-time groups and/or holiday activities, to allow young carers to have a break from their caring responsibilities. Additional services can be available such as one-to-one support and/or funding when respite alone is not enough. Funding can support young carers’ own interests, employment, education, or training. The team also provide general advice relating to the caring role.
A team of three support practitioners support over 900 young carers in Swindon. Support is also given in many other ways, including working with 79 schools and colleges to raise young carer awareness and identification and ensure the correct level of support is in place. Each school and college have a Young Carer Lead, who are given the opportunity to meet three times per year, facilitated and organised by the Young Carer team, to share best practice, increase skills and knowledge, and given up-to-date support available for young carers.
During COVID-19, the service continued to support carers through different methods, such as online activities, which included movie and quiz nights, magicians, and art sessions; with materials being sent by post prior to the activity. Weekly telephone calls were made to carers who are deemed vulnerable and particularly struggling due to a decline in mental health. Drawing on additional funding to support home schooling, the service purchased laptops, tablets, and equipment. Swindon Carers Centre championed for carers to receive priority food shopping, and issued food vouchers for local supermarkets.
Since COVID-19 restrictions have lifted, the service has been offering a full support, face-to-face service and have adapted some of the provision to support with the aftereffects of COVID-19, such as, offering wellbeing sessions to support improved mental health. Working closely with the local council, Integrated Care Alliance (ICA), and other network partners, together they ensure support is easily available to meet the needs of carers.
In 2022 Swindon Carers Centre was successful in a bid to Carers Trust to deliver a project called ‘Making Carers Count’, to continue to develop their work engaging with under-represented minority ethnic carers in Swindon, through the employment of a new Community Engagement Officer.