Recently, Barclays hosted the first in a series of breakfast events that brings together a range of decision makers and influencers within the sector to discuss issues in care. The events are part of the Design for Care programme, led by Design Council, which brings together organisations from private, public, voluntary and community sectors to find better ways to address our needs as we age.
We asked: how can we support people to make effective choices for their own care needs or those of a loved one? The insights below summarise the discussion at the first event, focused on ‘Enabling Better Choices’.
1. Language matters
Typical language, while well-meaning, can be stigmatising. This might lead to a delay in people seeking support as well as the association of negative emotions and behaviours in receiving care. The word ‘care’ is itself difficult and unattractive, ‘frail’ and ‘frailty’ is also not language that is really used by non-professionals.
People just want ‘a bit of support’ – it is the use of this euphemism that can help, especially in the early period of need.
How might we find a better lexicon that reduces the stigma of care?
2. Care and support must be ‘normal’
We all need a bit of support in our lives, not only in our later years.
If help with cleaning and childcare from an extended network of family, neighbours and friends is normal in many households, then why can’t we expand this notion to later life? Support should be life-long and seen as ‘normal’.
How might we frame care and support so that it feels life-long, not just for ‘end-of-life’?
3. Work with people’s motivations
Key motivations to act include: “I don’t want to be a burden to my family” and “I don’t want to lose my mobility”. While these feelings are ones of loss, they still represent goals. We need to show that planning ahead gives those who need care the greatest chance of staying in control and maximising their independence.
This is a response that is in direct contrast to the fear that if you plan for it, it will somehow happen sooner.
How might we allow people to voice their motivations and goals more clearly, whether negative or positive?
4. Goals can take work to align
By voicing motivations more clearly, we will see that they do not always align. An individual might want to do things irrespective of apparent risk, whereas family and friends might want certainty and safety.
How might we show where interests can align, where they diverge, and help individuals and their networks to more consciously navigate such challenges?
5. The basic options are unclear
There is no ‘tube map’ of the situations where people can receive a bit of support and what it might look like. We need to visualise the ‘main settings’. We also need better and more consistent terminology. People tend to stumble upon their care options and at the moment the options are often offered as an alphabetical list.
How might we visualise the options in a way that simplifies the journey of care, but is not too simplistic?
6. We need more positive and diverse visions
The basic options, however well visualised, need to offer more diverse and positive visions and choices. Making the options consistent (to roughly know what is available) but not uniform, is hard (as localities will always be unique), but we believe more can be done.
How might we allow people to find things that work for their unique needs and wants?
7. Key sign-posters do not always have all of the answers
GPs are often the first port of call, but many of them can feel ill equipped to advise. GPs sometimes don’t have the time to understand the breadth of the care options available, including ‘social prescribing’, for example, which goes beyond clinical therapies. Local authorities, who have ever more responsibility, typically focus solely on formally assessed services that only meet some needs.
How might we expand the vision of those on the front line of advice and support them to make the most of their trusted status?
8. We must diversify people’s understanding of who can advise and what their strengths are
We know that there are many other places and organisations that foster trusted advice, such as libraries, post offices, wider advisory organisations and community hubs.
How might we find the right online and real-world places to gain expert advice?
9. Peer support is under-developed
What role might those who have been through the experience recently play – would something along the lines of an online community, such as Mumsnet, be beneficial for carers? Local cafés enabling people and their carers to chat within the community could also be helpful.
How might we enable people to draw upon a wide variety of expertise?
10. Support for choice only matters if you have actual choices
There is not a suitable pipeline of options to choose from. We need to find ways to use people’s expressions of need to help create diverse solutions. How can service providers be stimulated and informed to offer what is desired in any locality?
How might we enable commissioners and service providers to better understand the underlying market need?
Hear some additional insights from those who attended on the day:
The insights gained will be used to inform and guide onward research that is currently underway in collaboration with Warwick Business School’s Behavioural Science Group, Which? and Philips.
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