Evidence matters

The Think Local, Act Personal partnership supports a national network of activists, practitioners and leaders who are engaged in building communities, which I chair. We have done lots of thinking about how we demonstrate that the many incredible initiatives in the network do what they claim to do. At today’s seminar in Manchester, for instance, we heard from Debs who talked about Creative Minds helped her swap pills for paints, after a lifetime inside a mental health system where people with power had reinforced her view of herself as someone who would always be ill, never in work and always in need of significant support and medication. She is now an accomplished speaker, professional artist and change maker. Her daughters, who had been her carers, have both now won places at University. She has now had several years without medication or NHS support and no longer needs to claim benefits.

Some impacts of Debs’ interaction with Creative Minds can be counted: the cost of her medication alone, let alone hospital stays, welfare benefits and unsuccessful support packages far outweighed the cost of her Creative Minds support. But could you measure her impact upon the audiences she talks to, the training sessions she delivers, and the benefits to her daughters and the community? Are stories, however powerful, even considered to be evidence? The difference between medicine A and medicine B may be possible to isolate and measure, but what about the difference a single support intervention makes to someone’s life, given how messy and complex all our lives are?

We have been developing ideas in response to these questions, such as those in our report in response to the government’s assessment of the evidence for personal budgets. With a Green Paper on the way, we wanted to develop some more actions for Think Local, Act Personal, its members and the wider system. Here are some we came up with today:

  1. Think Local, Act Personal (in liaison with SCIE’s Prevention Library) is using the Six Innovations format to gather one page examples of community-orientated interventions, which we will put into a catalogue to help commissioners and others understand some of the many approaches out there and how to makes choices between them. If you want to submit your initiative or organisation’s work, please contact Think Local, Act Personal.
  2. Measuring the impact of complex service systems is almost impossible using traditional methods. But in Engaging and Empowering Communities, we and all the main health and care bodies agreed that, whilst there is endless variety in our sector, all of us are aiming for a small set of shared outcomes for people, which include (in Prof Jane South’s formulation), people being in control and more connected to each other, and greater equity. We will explore the possibility of making measures for those universal outcomes available to any organisation, so that data on them could potentially be collected about large numbers of people.
  3. TLAP Chair, Clenton Farquharson made a powerful point: if we accept something as a basic tenet of a decent society, we stop demanding evidence for it. Few people in health and care would ask if there is evidence for the idea of providing support with dignity for instance. So if it were accepted across the system that connectedness, being in control and equity are the universal values they appear to be, would the question of evidence feel less of an excuse not to pursue them?
  4. There are one or two places which are doing lots of community-orientated or asset-based approaches, such as Wigan, Thurrock and Leeds. Does this offer the opportunity to observe and evaluate something approaching whole-system change? Some of us are already working with Thurrock and Birmingham University to consider its programme of work. Today we heard more about the whole-system approach being taken by the Greater Manchester city region. Do you know of other areas out there which are taking a whole system approach?

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No such thing as neutral

What does the social care sector need from academia? There has long been a gap between what national government says about the need for social care to achieve and evidence outcomes, and the reality of the kind of basic functional support that local government can and will buy. This gap has widened during austerity to and is now unbridgeable without significant additional funding for councils to provide adequate social care.

There is no ‘neutral’ position for academics to take on this. Do they look for outcomes which are set out in legislation but which many services, particularly for older people, are not asked or paid for and do not attempt to achieve? To whom do they ascribe blame for the gaps and failures they will surely find: hard pressed, underpaid frontline workers, providers which teeter on the edge of financial viability, local government commissioners who lack the money to buy what people need, or central government which has devolved spending decisions to the local level? Those are political judgements.

Funding bodies and the institutions which bid to them put the majority of their resources into researching the most prevalent models. That is pragmatic – those models offer large sample sizes and are the most significant budget lines in council and NHS budgets – but it also ensures that the evidence base for traditional models strengthens, whilst innovative models like Shared Lives, Homeshare, Community Circles, Time Credits or Local Area Coordination are locked into an endless cycle of small scale qualitative research which finds them to be promising but unproven. This in turn entrenches risk-averse procurement on a ‘better the devil you know’ basis: certain kinds of predictable failure look less career-threatening to commissioners than the possibility of success, particularly where ‘success’ would mean outcomes valuable to people but not valued by the broken economics of our health and care system.

I am honoured to be joining Birmingham University as an honorary senior fellow. Birmingham University’s school of social policy has the mission  ‘to change the world as well as to understand it’ – as 2017 draws to a close, it feels like the world has never needed changing more.

This is an extract from my blog for the university: https://www.birmingham.ac.uk/research/perspective/academic-decisions-for-social-care-sector.aspx

More research needed

We are lucky to be working with some great academics at Kent University’s PSSRU, who are carrying out the first major research into the cost-effectiveness and impact of Shared Lives in recent times. You’ll find summaries of two ongoing pieces of research on our website with Cabinet Office funded evaluations of family carer support and mental health care coming soon. Kent University have also researched outcomes for older people and designed an outcome measuring tool which we’ve made available to all of our member organisations, and which is starting to gather a national dataset of information on the outcomes which people achieve in Shared Lives. A key feature of this tool is that enables people to say whether Shared Lives has a positive, negative or no impact on a number of areas of their lives and wellbeing. I think that being prepared for unintended negative consequences of care and health interventions is a key step towards getting a rounded picture of the contribution that support makes to living a good life. We’re confident that the tool will show the positive impacts that people tell us about constantly, but where there is variation, it will enable us to work with local organisations to improve.

We have just started a conversation with another university about Homeshare, which is also being evaluated by the Social Care Institute for Excellence as part of the £2m Big Lottery and Lloyds Bank Foundation funded national partnership. However, both Shared Lives and Homeshare remain under-researched compared to other sectors. Here are some of the things we’d love to know, or be able to prove, which are not yet being researched:

  1. What are the ‘preventative’ outcomes of Homeshare? How can Homeshare make the most impact upon people being able to live well for longer in their own homes?
  2. The cost-benefit of Shared Lives breaks and day support: most of the research at the moment looks at live-in arrangements, but this is only half of Shared Lives provision.
  3. What motivates Shared Lives carers? Some local organisations have a handful of Shared Lives carers, whilst others have hundreds. Shared Lives schemes appear to experience very small turnover of Shared Lives carers compared to other forms of care. We need to know more about who to reach, how to reach them and what best motivates people to take the huge step of becoming a Shared Lives carers, and to stop. We think we know, but it’s never been ‘properly’ researched.
  4. What impact does Shared Lives have on the rest of the household? We hear lovely stories from the children of Shared Lives carers: it would be great to collect more of their stories and understand their and other family members’ experiences and contributions in more detail.
  5. We know that matches can last a lifetime, but what factors make some matches last decades and what leads to the small number of matches which break down and what happens to people post-Shared Lives? There may be no ‘typical’ length of a Shared Lives arrangement: some people want to use Shared Lives as a stepping stone to their own place and others are looking for somewhere to settle down forever. What goes in to some matches being able to continue even when the individual develops complex health needs: the role of the Shared Lives household but also the local organisation and partner agencies?