Fresh thinking to support people with long-term conditions

Finding a new way to work with people with long-term conditions has never seemed more important. Francis’ findings about the failings in Mid Staffs – and the subsequent realisation that the problems this highlighted may be more endemic than anyone appreciated – and the current controversy over the seemingly ‘good’ Liverpool Care Pathway now being labelled as ‘bad’, leave a lot of health staff bewildered. How did we get to this point?

It’s not so much that we can’t see ourselves or our families as the recipients of care or that we aren’t well intentioned, conscientious and hardworking, it’s more that it’s hard to see how things can change. This may be because we carry on seeing what we do in a particular way – how we were trained to see things and how they have been designed.

It seems that what’s needed is a fresh way of thinking about what we as health professionals are called on to be and to do.

Among the important developments recently is the thinking and work around personalisation of care and partnership working with patients and carers in the setting of long-term conditions. It’s probably fair to say that if personalisation and partnership working were ‘normal’ and care was truly integrated, it’s hard to see how Mid-Staffs could have happened or the Liverpool Care Pathway fallen into disrepute.

Maybe it just takes more time than we’d expect. But the ideas around partnership have been around for two decades and, despite some really important successes, we’re still a long way from it being routine.

It’s encouraging that we’re beginning to move from over a decade of theory and policy aspiration to some examples of effective translation into practice. It’s also encouraging that there is a developing coalition of policy makers, commissioners, senior health leaders and clinical teams across a wide range of areas, all aligning to take this forward – huge enthusiasm for change.

Vikki Entwhistle and Alan Cribb’s report, Enabling people to live well, is a really useful contribution for all of us working in this area. Using workshops involving both service users and professionals with experience of implementing partnership approaches, and tools available from philosophical thinking, they have taken a fresh look at some of the challenges and opportunities that we face.

They start by recognising that partnership working is currently a major health theme, with a central idea that it’s better for people to be able to do more, rather than less, to manage their long-term conditions and that clinicians can play an important role in enabling this.

The authors then scrutinise the current ideas around partnership working to try and get beneath the surface and understand why collaborative approaches to managing long-term conditions have not been adopted in practice as widely and consistently as many policy leaders and quality improvement advocates have hoped for. Or, when they have been adopted, appear to be less effective than evidence suggests they should be.

They examine two current models of personalisation as exemplars, recognising that these don’t pay sufficient attention to the complex personal and cultural contexts that influence service users, and make assumptions about which options users may potentially (be ‘allowed’ to) choose or be supported to choose in relation to their health. They recognise the necessary simplification that these models use to describe the shift from a current to a ‘better’ way of working. This in itself gives rise both to problems of detail and generalisability.

From a clinical perspective, the analysis is strikingly perceptive. As a participant in one of the workshops, it’s clear that Vikki and Alan have skilfully teased out not just the obvious, but also the underlying questions and concerns that are real issues in the delivery of collaborative care on the ground. They offer some thoughts about how these dilemmas could be resolved using new ways of thinking.

Firstly, they help us to recognise the complexity and subtlety of the lives of people with long-term conditions and the relational influences which shape their needs and perceptions (including interactions with health professionals).

They go on to extend our thinking of how service users and carers might frame their own aspirations for their health and wellbeing, and explore the potential role and limits of current health services in supporting these.

I hope I’ve piqued your interest. It’s beyond this short blog to describe, in any depth, the new thinking they use. But it’s a useful and challenging paper – short and worth the read. Let me know what you think. I’d love to know how it’s affected your thinking too.

Nick is Clinical Fellow, Shared Decision Making and Support for Self Management at the Royal College of Physicians.