Understanding local needs - adult carers
Effective commissioning should help to drive up quality, enable people to choose or direct their own care, facilitate integrated service delivery and make the most effective use of available resources. It should stimulate new approaches and address gaps to improve locally agreed outcomes.
Commissioners will be familiar with the classic commissioning cycle of understand/analyse – plan – do – review. Good commissioning is about leadership – using evidence, local knowledge, working in partnership across health and social care and beyond, and working in true co-production with local people. Good commissioning fosters positive relationships with providers.
Issac Samuels has accessed services plus is a carer
To develop a full picture of what’s needed, commissioners must gather and make sense of information from a range of sources. They need to get a view of what’s wanted and what will make a difference. Understanding supply – what is available and how it is used – is essential. This includes provision that’s off the radar because it is not commissioned by the local authority, or because it is small scale or not described as a ‘break’. Carers may have put in place their own arrangements and solutions. Commissioners need a sense of how direct payment users are utilising their budgets and what self-funders are doing.
The section on the national evidence base sets out what carers have said is important to them, how they take breaks and the barriers they face.
The Local Government Association (LGA) report Integrated commissioning for better outcomes (LGA 2018) is a great resource to support commissioning for outcomes. The toolkit can be used to focus on carers’ breaks – to analyse local supply, needs, secure stakeholder sign-up and co-produce commissioning plans for carers’ breaks.
Clare Tessla has accessed services, whose daughter is her carer
Staff who carry out assessments need to understand that people who use services and carers often feel guilty about asking for support.Carers’ Breaks Reference Group discussion, February 2019
Understanding local aspirations and needs is vital if planning is to deliver what is needed and valued. Commissioners need to aggregate and utilise information from individual assessments to base planning and messages to providers on needs, outcomes and preferences.
Empower social work staff to take risks and do things differently without fear of reprimand.Carers’ Breaks Reference Group discussion, February 2019
Assessments record the rich detail that helps understand specific needs, aspirations, barriers, diversity and local variations. Commissioners need to establish channels with practitioners and those undertaking assessments to gain this intelligence. It helps to consider the following questions.
- What information is being collected within organisations and across organisations (e.g. mental health trusts, ICSs, integrated assessments)?
- What recording systems are used – can themes and trends be extracted?
- Are carers’ assessments carried out by an external organisation? Are they asked to identify themes and issues?
- Are providers doing their own assessments?
- How do you gather information from and about self-funders?
A more detailed understanding will shape the right support and responses. It will help identify where breaks are not being addressed, discussed or provided. This can enable analysis about equalities and different needs groups, and identify gaps and opportunities.
Employers, including local authorities, should improve the skills of assessors and continuity of skillsCarers’ Breaks Reference Group discussion, February 2019
Commissioners, with others, will want to consider how assessments can be improved in relation to carers’ breaks. Recording and addressing relevant information is one aspect of understanding needs and impacts. Another key aspect is exploring options and developing solutions with carers so that they get the breaks they need.
National evidence reveals issues with the quality of carers’ assessments – there is a huge variation in how they are carried out, recorded and implemented. They are often not outcome-focused, updated or followed up. Carers are unsure what assessments are for or even if they’ve had one. Assessments should be helpful to the carer and there is a need to get the basics right in order to be Care Act compliant.
Many assessments do not properly address the carer’s need for a break. The State of caring report (Carers UK, 2022) noted that the need to have regular breaks from caring was the most likely issue (33 per cent) not to have been properly considered in assessments. Many carers don’t get breaks because they don’t have information about them or know what’s possible. If they are only presented with limited options – because social workers or assessors aren’t aware or aren’t confident – then they may feel those options aren’t suitable. Sometimes carers do not feel they can be open and honest about their need for a break. Many feel they must be seen to be ‘coping’, or they don’t recognise their own need for a break.
Care Act-compliant assessments can help to:
- understand emotional barriers carers may face in thinking about breaks
- understand what’s wanted and needed and how breaks may help with sustainability
- use strengths-based approaches to help carers consider their own skills and networks as well as what’s important to them
- assist carers in thinking through what would work for them and what’s possible
- take whole family approaches that consider outcomes and impacts holistically
- ensure joined up approaches by linking with health or mental health assessments
- provide and gather vital information at key points in a person’s life such as transition to adulthood
- provide tailored follow-up information about breaks, or how direct payments could be used to create flexible and individualised arrangements.
The term 'assessment' can stigmatise carers who are from different backgrounds, Carers UK (2023) gives examples of alternative language being used, such as 'Carer Conversations', and 'check-ins'. Carers should be approached with accessible language, but also be informed that these are formal carers assessments so that their rights are not understated.
Diversity in carers assessments
Data on LGBTQ+ carers, Black Asian and minority ethnic carers, and carers with disabilities suggest these groups face barriers in accessing services (Carers UK, 2023). In the Carers UK report, 'Carers' assessments: developments, digital, diversity, co-production and good practice', carers from Black, Asian and minority ethnic backgrounds describe a lack of awareness raised regarding carers assessments and what they are useful for, and the difference they can make.
The State of Caring 2022 report states that LGBT carers are less likely to have an assessment than heterosexual carers, with 30% of bisexual carers not thinking an assessment would be beneficial, compared to 21% of gay and lesbian carers and 19% of heterosexual carers.
The Carers UK (2023) report includes resources and recommendations to engage with people from different cultural and faith backgrounds, and make assessments more relevant and tailored to people’s needs, such as through translation and co-producing assessments.
- Assessments: Looking after someone (Carers UK, 2022/23)
- Person-centred care: care planning, SCIE
- Taking a break (Carers UK, 2022/23)
- NICE supporting adult carers guideline – assessing carers’ needs (NICE, 2020)
- Carers’ assessments: developments, digital, diversity, co-production and good practice (Carers UK, 2023)
- Carers UK State of Caring report (Carers UK, 2022)
Remember not every carer wants to be a carer and don’t assume [the] family will fill in.Carers’ Breaks Reference Group discussion, February 2019
Co-production and engagement
Co-production improves outcomes. Relevant provision can only be developed when it’s truly shaped by the people who will use it. The right relationships and platforms can offer efficient ways of getting people’s views quickly. Co-production doesn’t have to be unwieldy. For example, in one area young adult carers were asked their views about breaks and within a couple of days rich and varied ideas and insights were shared via their Facebook group. See also SCIE’s resources on co-production).
Tips for good co-production and engagement
- Be flexible and use a range of approaches so that carers can be involved in any way possible. Ask carers what works for them. Use established groups such as your carers’ reference group or partnership board but don’t make that the only way.
- Engage with people at different times and in different ways: at weekends, via telephone calls and webinars. Be creative – use social media, information boards at shops, pharmacies or GP surgeries. Without this you may miss key voices or particular groups. Ask the people who will be receiving the care and support for their views. There’s no point planning services that people don’t want.
- Equalities and diversity. Co-production needs to be inclusive of all communities and needs. Some carers or communities are seldom heard, they may be reluctant to engage or your engagement approaches might not work for them. Can you link through other channels? Who do they feel safe talking to? Are there carer organisations, faith groups or community groups that people trust that you can link through? People may also be linked with groups focused on specific needs such as dementia, stroke and mental health. Have you missed anyone?
- Understand the context. People fear losing what they have – even if it isn’t perfect. It needs to be safe for people to give their views. What is available will shape what people say they want and ultimately what people choose. You can help broaden horizons of what’s possible by sharing people’s stories and examples of different breaks.
- Respect and value people’s views. Ask carers if you have the questions right. Have they been asked something similar recently, or responded to surveys that you don’t know about? Engage people with meaningful questions that will make a difference. What’s stopping people taking a break? What would a good break look like?
- Let people know how information is going to be used – what difference it will make and by when. Let people know what has changed as a result of their work.
- Don’t forget reward and recognition, whether that’s paying carers for their involvement in developing specifications or ensuring refreshments for people giving their time for free at an event.
- Carers UK Carers’ assessments: developments, digital, diversity, co-production and good practice (Carers UK, 2023)
- Time away from caring: good practice in carer breaks (Carers Trust, 2023)
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.
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 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.
Supporting stakeholder engagement
What are your approaches and channels to engage a range of stakeholders? Engagement helps foster collaboration and enables a broad picture of needs and potential solutions. Partners may have ideas across wider agendas as well. Some approaches to consider are as follows:
- Bring all stakeholders together. It’s important for providers, commissioners and decision-makers to hear from carers – their stories are particularly powerful. Providers can showcase good practice and innovation can be shared. Together stakeholders are more likely to stimulate new discussions and change power dynamics.
- Is there a forum to meet with providers? Does that engage different types of organisations – community enterprises as well as traditional services?
- Gather information and get views from GPs and pharmacists – they are seeing carers regularly.
- Are elected members involved? As well as shaping decisions, they will have a view and represent the needs of their constituents.
- Are carers represented on the health and wellbeing board? Are breaks part of the agenda?
- Ensure carers’ breaks are on the agenda of formal partnerships across the local authority, health and mental health.
- Link with your local Healthwatch. They are the independent champion for people using health and social care services. They promote a community voice to shape and improve services. Can they focus on breaks?
- Are you linking with disabled people’s organisations (DPOs), carers’ groups and needs-specific groups? Community organisations and faith groups will also have a view and may be able to offer more creative solutions. Carers are part of the community too.
- Don’t forget local businesses – many want to contribute to their local community. They may want to develop their corporate social responsibility (CSR) plans.
Commissioners and providers need to understand their area and listen to carers to get their views. Ensure there are multiple feedback loops and ensure you use that feedback. If something is not working, move on.Carers’ Breaks Reference Group discussion, February 2019
Analysing supply and demand
Mapping provision and supply
Commissioners will need information from a range of sources to understand the local supply of carers’ breaks. Remember, many breaks are not funded or arranged by statutory services. Good supply mapping will look at:
- A stocktake of existing information. What does your carers strategy identify? Is your market position statement up to date? Has there been any wider mapping of registered suppliers, the voluntary and community sector and micro-enterprises?
- What do you know about local spend and investment in breaks?
- Analyse the range of supplier types and contractual arrangements. What are your contracted services? What is the uptake of breaks? What registered services are there in the area? What other types of services are there?
- What do you know from assessments and reviews?
- What have carers told you about the services they use? How do they get a break?
- Providers – what is their honest view of supply, need and sustainability?
- What is the quality of local supply? How do you know this? Through contract monitoring, CQC inspections, peer quality checking? How does it compare with ‘What good looks like?’
- What do people perceive as the barriers to taking a break?
- What has been the impact of cuts or changes to other services?
Check that you are commissioning what’s needed, including protected characteristics.Carers’ Breaks Reference Group discussion, February 2019
As well as understanding supply, commissioners need to understand the demographics of, and the needs and trends in, demand. Information from engagement, co-production and assessments will form a key part of this.
- What do local carers want and need? How do you know this? How much care are carers providing? What does your local carers’ survey say? What information is there from assessments and reviews?
- What demographic information is available? Census data and the Joint Strategic Needs Assessment (JSNA) should show how many carers and people with needs there are in an area, age profiles and ethnicity. You may already have a targeted area needs assessment about carers.
- How many people are known to statutory services? Lack of integration across the whole system can make this difficult to quantify, so utilise channels across health, mental health and social care.
- Equalities – how does use of services compare to expected demographics? Is there lack of uptake by particular communities or age groups? Might you need targeted campaigns to reach some carers?
- What intelligence do providers have? Providers, do you have a waiting list? Do you receive approaches from people you can’t help?
- Are there trends that indicate particular pressures on carers and their ability to carry on caring? Does this happen at particular ages, life stages or more so with particular conditions, or for particular protected characteristics, for example? Is there more breakdown with working carers or where people aren’t receiving other support?
Shift the power dynamic between commissioner, provider and carer so that there is mutual respect.Carers’ Breaks Reference Group discussion, February 2019
Commissioners and providers need to understand the gaps – the difference between supply, availability, demand and quality compared with ‘what good looks like’, so they can plan how to address this with communities.
You may find you have gaps in your own local data and evidence. You may want to address this by developing breaks-related performance measures, improving understanding of outcomes through peer evaluation and working with partners to understand the wider benefits of breaks.
It's important to understand the role that carers play and what the impact would be if they stopped caring, so that you can commission based on the long-term support needs of carers and their families. Targeted approaches may be needed to address equality and access issues particularly where there is under-representation of some carer groups.
Working up options for development needs to be similarly co-produced and evidence based. Carers and stakeholders will have ideas for addressing these aspects. Providers may have proposals for development. Innovative approaches may have scope to grow. There may be wider agendas and strategic opportunities to embed effective breaks. This is addressed in more detail in the Market shaping section.
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.
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 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.