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Understanding local needs for adult carers’ breaks

Good commissioning

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.

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.

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

Issac Samuels has accessed services plus is a carer

Clare Tessla has accessed services, whose daughter is her carer

Assessments

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 skills.

Carers’ Breaks Reference Group discussion, February 2019

Improving assessments

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.

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.

Practice examples

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

Understanding demand

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

Addressing gaps

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.

Practice examples