The right help, in the right place, at the right time.

I was talking the other day with a colleague from another voluntary organisation, which, like us, provides support that improves people’s health and wellbeing, and keeps them out of hospital. They were trying to negotiate funding for what they did with a hard-pressed NHS body.

The challenge from potential commissioners was one with which people working in Shared Lives and Homeshare, and other community-based services, will be familiar: “You may be able to demonstrate what you do is good for people’s health and wellbeing, but in the current climate, how could we invest in it if it can’t demonstrate reduction in hospital bed days?”

One of my continuing frustrations is that, in return for investments which are a tiny fraction of local or national budgets, we demand from community-based support and preventative interventions a higher level of evidence than we demand of much more expensive formal state services. There are, for instance, large parts of the NHS, sucking up billions every year, which cannot demonstrate they reduce bed days: they are seen as having intrinsic value. And they do, but the value placed on a part of the health and care system should rest solely on the health and well-being outcomes it achieves, not on how well-established it is as part of the public service furniture,

Every recent health and care strategy talks about the value of community and voluntary services. Much of that value lies in their distance from hospitals and crisis services: not just in the sense that they reach people in their own homes, but also in that they can often act early, rather than close to the point of crisis; and they are culturally far removed from the medical world. If those interventions are valuable because they are far away from hospitals in time, distance, and approach, it makes no sense to demand, above all else, that they demonstrate their direct impact on those hospitals: if they are genuinely community-embedded, they will always fail that test.

This isn’t to say that we should not ask community providers to demonstrate the evidence of their impact. We have worked with Kent University and the Shared Lives sector to develop an academically-robust outcome measuring tool which is available without charge to every local Shared Lives organisation in the UK. The tool shows that Shared Lives services are reporting very high rates of improvement in the indicators of good health and well-being which matter most to people, which are as much about people’s connections (how many friends they have, for instance), as they are about their independence.

But as long as we continue to measure community services using terms defined by acute and crisis services, we will continue to conclude that life-changing approaches like Shared Lives are nice, but not essential, and we will tie up the lion’s share of limited public service budgets in buildings which many of us could avoid with a little bit of the right help, in the right place, at the right time.

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?