A great new blogpost in our “in my shoes” dementia series today: Laura Robinson, stresses the need to put the person in the centre of “Integrated Care”. I first met Laura at a co-production event at Birmingham University last year and was immediately impressed by the passion she brought to her role – and that was before she recently moved on to National Voices!
I think Laura is a “natural blogger” and am delighted to give her this forum for her in-depth and thoughtful ideas. She mentions one of my most admired carers – Barbara Pointon – and highlights the irrelevance of who provides a service, emphasising instead the requirement for a helpful, joined-up approach. Similarly, I recently attended a fascinating talk at King’s Fund by Cieran Devane , CEO of Macmillan Cancer Support, talking about the extra clout charities can have if they join forces and put the person’s interests first rather than arguing between themselves as to who has the greatest needs…
Getting personal: it’s not you, it’s me.
Health and social care have a complex relationship. An ageing population and growing numbers of individuals with longer term conditions have led numerous governments to devise policies and programmes to reunite the estranged brothers.
As the Health and Social Care Act places a duty on the new members of the healthcare family to promote the integration of service provision, now seems a good time to think about where we are, and where we want to be. What does integration, coordination and personalisation mean for those who receive services? You, me and our families.
Barbara Pointon cared for her husband, Malcolm with dementia for over a decade. Her experiences paint a vivid picture of some of the ongoing barriers to integrated care. A lack of communication between services led to unsuitable provision, leaving Malcolm frustrated and unstimulated. Funding focused assessments left them without vital equipment and Barbara without much needed respite. The image illustrates how services users and carers can become lost in the complexity of the system, caught in a web of multiple professionals, uncoordinated assessments, repeated patient information requests.
Sandie, from Norfolk, has MS and has a different experience. At diagnosis, she felt like she was put in a box and defined by all the things that she couldn’t do. But by creating her own care plan, supported by personal budgets, Sandie now feels she has freedom and control over her life. As Sandie puts it: I am a whole being. I am not made up of ‘health’ and/or ‘care’ – they overlap [and] my brain and body cannot separate the two.
Distinctions between primary, secondary, domiciliary, respite – these words mean very little to patients and service users. They want care – where it comes from, how it is arranged, who delivers it, who pays for it, is secondary. So how can we get less of the former and more of the latter? How can we get past the history, the silos, the funding and avoid losing the person in the mix?
To get some answers, National Voices, a coalition of health and social care charities working to strengthen the voice of patients and service users, took a look at the research evidence, and spoke to over 100 charities representing people with conditions common and rare, physical and mental.
We found that there can be no single definition, model or system for ‘what works’ – care is personal, and solutions need to be too. A range of approaches should be developed and tested to enable integrated and personalised care to be delivered in practice. However, we did identify a series of common principles which could help put patients and service users at the heart of care.
What came out loud and clear was that integrated care is not about organisational structures but about organising provision around the needs of the individual. People are not interested in institutions and their peculiar barriers, drivers and vested interests. Changes should not be driven by saving money but by the goal of delivering the best value services possible, which will provide individuals with the support they need, when, where and how they need it.
But health and social care are not alone in rising to meet this challenge. Community and voluntary sector partners are well placed to identify gaps and act as an integrator in bridging them. Carers, if adequately supported as a vital part of the system, will be better enabled to locate all the pieces of the jigsaw and work with professionals to bring them together to get to the full picture quicker.
But most importantly, individuals themselves need to be at the heart of that picture. Services that are co-designed with the individuals which will use them will not only be better integrated but more effective too. By providing comprehensive, tailored information and encouraging personalised care planning, individuals can take ownership of their health, become more involved in decisions about their treatment and better placed to support coordination and self manage their conditions.
Now the framework’s in place, the culture needs to change. The individual is not a bundle of needs to be addressed or a package of problems to be resolved. Their knowledge, insight and preferences are the foundations of a solution.
Here’s to the start of a new relationship: it’s not about you, it’s about me.
I co-manage a LinkedIn group called “The Personalisation Group to integrate social care, health and housing”… a very lively group with 1800 members. This is just the kind of approach we are aiming to encourage. I will post this in our group now! Gill Phillips