Breaks and respite in context
Holistic approaches are about considering people in the context of their families and support networks, not just as isolated individuals with needs. They are essential to good practice and a core principle of the Care Act.
Integrated or joined-up approaches across services – health, social care, mental health, adult and children’s services – are also key. Many carers feel confused navigating complex service systems with ‘cliff edges’ of funding and provision. Liaising within and across health and social care becomes another job for the carer. Fragmentation adds to people’s anxiety – it certainly doesn’t promote health and wellbeing. This extra stress can be hugely off-putting and result in carers not getting the help they need. It can also mean that the support that is available doesn’t have the best possible impact.
Breaks should not be seen in isolation. Carers want breaks to be part of a range of support that they and the person they care for need to live well and that enables carers to have a life alongside their caring role. The approach should be holistic in terms of:
- whole family approaches – addressing what works for particular families
- the wider support that people need to live well – not compartmentalising people
- integrated approaches across health and social care and wider agendas.
Commissioners and providers need to see respite and breaks as part of the bigger picture of support in the local area. Don’t plan it in isolation: think about what the carer and cared for-person needs before and after the break as well, otherwise the value of the break may be limited.Carers’ Breaks Reference Group discussion, February 2019
Whole family approaches
The most effective approaches are ones that are meaningful to families and understand the interrelationships that are so vital in supporting respective needs. Offering breaks that may be good on paper for the cared-for person but are only available at times when the carer is at work, or when the friends they wish to see aren’t free, for example, is not going to deliver the best outcomes. Also, a carer will not enjoy a break, or may indeed stop taking a break, if their loved one does not enjoy their own experience or if it’s too inconvenient.
Commissioners and providers need to understand the complexities of families. Some carers may not want social care involved or be wary of it. Carer organisations, for example, may be more able to open up the conversation. Support to enable really personalised approaches, such as pooled personal budgets for families, can be a great way to tailor solutions. However, just offering budgets is often not enough and can add to people’s stress. People may need support with ideas or administration to get things working.
Caring relationships are not linear. Other family and friends may be involved, or there may be co-caring, as is frequently the case with older couples. Valuing the roles that different people play and responding to their respective gifts, interests and needs can help in planning effective breaks. Many carers want more inclusive approaches – services that know the family rather than ‘deal’ with just the carer or the cared-for. Hospices do this well. Commissioners and providers can learn from them in order to build whole family approaches.
As well as good co-production with carers (including self-funders) and their loved ones, so that carers define and shape what’s needed, commissioners need to create channels for assessments to inform delivery. To do this well, assessments need to be truly strengths based – really listening to what families need, helping them tailor solutions that are right for them. More on this is the assessment section.
Continuity of support
Breaks will be most effective if they are part of an overall and well-coordinated approach to support. A ‘sticking plaster’ approach to breaks, when other support is absent or simply not working, will not deliver the intended outcomes. People may hold on to services that aren’t right for them as they fear losing what they have with no alternatives offered. To offer the best possible experience and outcomes, breaks should be aligned with other services in terms of availability and consistency of approaches to support individuals. Communication between services, about timing and what works for a person, as well as some flexibility, can make a world of difference.
It is important for commissioners and providers to consider the wider climate of local services and the big picture in the community. Have there been changes or reductions in day services or support groups? Carers may get occasional breaks but if that’s against a backdrop of wider service reductions or extra pressures, then those breaks, while vital, may be less beneficial as the carer is pushed to breaking point. Carers may need advice about accessing alternative support. There may be opportunities for providers and community groups to respond to these changes. What makes a difference to people’s lives isn’t just about health and care services. There may be untapped community resources – clubs or sports groups, for example – that match people’s interests or are keen to reach a wider demographic.
The Care Act (plus) places a duty on statutory services such as health, mental health and social care to ensure approaches are integrated for the benefit of individuals. Carers should not have to navigate multiple and complicated ‘customer journeys’, nor endure multiple assessments requiring the same information to be given over and over again. Nor should it be their job to make services join up and talk to one another. That is the job of those services, and in many cases it is their legal duty. Integrated approaches, when they work well, can really maximise outcomes and make the best use of everyone’s time and resources.
Summary message for commissioners and providers
Ensure specific delivery but align to the big picture and understand people’s lives and what’s important to them.