Knowledge is power

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 Continue reading

People are the most effective integrators

At a discussion about integration the other day, someone talked about the four agencies which came to see her parents to support her Mum who has dementia. Each with their own agenda (continence, aids and adaptations, homecare etc) and each demanding the same set of information from the lady who now struggles to communicate clearly and her husband who is at his wits’ end.  We’d all see that as wrong, but what to do?

If your world view is that of a service provider you may well suggest the solution to this is for the services to share their data. To do this, of course, you need to align everyone’s IT systems. This will cost £10bn and collapse in miserable failure about five years later.

Looking at this problem from the family’s point of view, however, you might decide that the key thing is that, if each agency wants a similar set of information, the information gathered by the first one needs to be given to the individual or their family, on a sheet of paper will do, but you could throw in a USB key as well if you want to get technical, and the family can then show that information to the next agency, who can add their own sheet if they’ve collected anything new. These days you can capture information in an instant via a photo on a smartphone and then translate that info into the agency’s particular format if they need to.

It’s a simple, virtually free solution, but there a couple of quite deep cultural changes implicit in it. The first is that an individual or family can and should take ownership of their own information, and by implication share ownership of their care package. The family might lose it, I can hear some people saying. True, they might, in which case they will need to accept having to repeat themselves.

Another challenge is that this only works if the agencies are after roughly the same info, which suggests perhaps that they are all interested in similar things. This would be more likely to be true if they shared the same goals and priorities. It’s time to set one set of goals for all public services. I suggest the goal of helping people to achieve well-being, which handily has already been set as the goal for social care by the Care Bill. From that shared, holistic goal will come far better results in terms of integration than a hundred restructures.