I contributed to a debate today in the Houses of Parliament hosted by Lord Filkin and the South East England Forum on Ageing, which has been looking into the future of information and advice services for older people. Information and advice services are not the most high profile within the care and health world, but like many bits of the system that don’t get a huge amount of attention, they matter.
They matter because knowledge is power. The information we have about our options not only shapes our own choices: it shapes the services which are available too. That’s because people can only choose, and invest in, what they know about.
We live in a world where there are more support and healthcare choices than ever: hundreds of thousands of people with personal budgets and personal health budgets can choose to spend those budgets outside of traditional services. The increasing number of ‘self-funders’ who have to pay for their own care can choose from a market of support services which includes some innovative start ups. Thousands now can also choose a widening range of community and asset-based models like Shared Lives and Homeshare
But for some, there are also fewer choices than ever: austerity has seen over a million people with no support at all and almost all social care cuts fell on poorest areas according to a Guardian newspaper report.
So the first conversation someone has with their local council or NHS is crucial. Information and advice services are not a passive pipeline through which information flows, they are the first place where someone’s relationship with services and ideas of what’s possible are shaped.
So whereas some information services see their role as ‘signposting’ people to (an often diminishing number of stretched) services, a Local Area Coordinator’s role is to help someone to think about what a good life looks like to them, before thinking about the best way to achieve it. That may involve drawing on services, but equally it might start with building or rebuilding relationships with a whole range of people around them. Local Area Coordination is explicit in its goal not just to support individuals to have better planning conversations and make better individual choices, but also to reshape services and communities around those choices.
We are at the sharp end of this relationship between knowledge and power at Shared Lives Plus, because our members offer two ways for people to form supportive households which are both under-offered and under-used. Shared Lives and Homeshare could be offered to everyone, but are currently offered only by those information services which think outside the box and start with the good life question. Approaches which are used by a small group only attract small development budgets: this is one of the self-fulfilling prophecies that I argue in my book are hard-wired into our system, promoting endless tweaking to the most-used models but stifling more radical change.
After the death of her husband, Rosemary became lonely and by the time she came across services’ radar, she was increasingly depressed and struggling with independent living in her own home. The information she offered at that point, but also the way in which it is offered, are likely to have huge implications for what happens next:
- Someone offering advice from a medical perspective is likely to focus on relieving the symptoms of her depression. This may be a discussion about medicines and talking therapies.
- Information could focus on practical support, as Rosemary loses confidence to do things for herself, but that support could contain as many risks to her independence as benefits, if others start doing things for Rosemary that she could start doing again for herself.
- Information given via the VCSE sector, or a social prescribing scheme, might be more likely to link Rosemary to charitable befriending services, transport and local activities.
- Someone who understands the model could link Rosemary to a Homeshare organisation, but even in areas where Homeshare is available, that might depend not just on its availability, but also on information services’ curiosity about new models and attitudes to real and perceived risk.
Those would be very different journeys. They are all shaped by the information that Rosemary is offered in the crucial first conversations she has with those offering help, and the ability of the person giving her information to find out what a good life looks like from Rosemary’s point of view.
The more we can get recognition for this illness the better