How do we integrate health and social care?
This Care Initiative event was held at Green Templeton College on 19 October 2017. This report was written by Senior Research Fellow Professor Trish Greenhalgh.
It was an evening of two halves. With apologies to the truly excellent guest speaker (Professor Martin Knapp), I want to talk about the second half first.
After the lecture, an audience member described how integrated care had happened in practice when her late husband was very sick. A patient of eight different NHS clinics, this man had had multiple needs and required a lot of assistance with personal care (provided almost exclusively by his wife) as well as the co-ordinated input of numerous professional carers including physiotherapy, palliative care and home nursing. In the absence of accessible and co-ordinated NHS and social care input, she had organised and funded almost all of this care herself. “If it happens at all,” said this carer with years of experience, “integrated care is achieved by the patient themselves and their [lay] carer”.
Another audience member, who is a trustee of Action for Carers (Oxfordshire) and also had been a carer herself, made a similar point from the floor. “[Lay] carers”, she said, “are personally trying to integrate all sorts of things from benefits to medication management. You can have all the diagrams you like showing this or that organisation ‘integrating’ with another, but it won’t necessarily achieve integration on the ground.”
Guest discussant Sara Livadeas of Social Care Works Oxford recalled a time in the early 2000s when a social care learning disabilities team were co-located with the community-based healthcare team to form the Community Team for People with Learning Disabilities. Although there was a formal partnership, “integration” of care happened largely informally as professionals from different organisations congregated in the coffee room or walked in from the car park. Importantly, it had a pooled budget. Because of that, “we stopped arguing about whose responsibility something was and just got on and delivered it.”
More generally, observed Sara Livadeas, we tend to view and understand “integration” of care in terms of structures rather than processes. Her experience as both a commissioner and purchaser of integrated care suggests that the latter more easily facilitates change at the level of everyday actions and interactions.
At dinner, talk turned to our own experiences attempting to integrate the health and social care for relatives – either by delivering care ourselves or commissioning it from others. One person described how their entire monthly take-home salary is currently being spent on a private care home for a parent with both cognitive and physical impairments. Another told how she and her husband, academics both, faced a choice five years ago: one partner had to give up work to do daily visits to a parent who is still living alone (a three-hour round trip). The parent remains (just) able to live independently, but with visits to (now) four different hospital clinics, progressive frailty and loss of confidence, it’s getting harder by the day.
Others had similar experiences. A high proportion of the annual leave of many people in work is used to make care journeys; every other weekend is written off; it’s more stressful than having young children – and so on. One academic commented on the irony of why his doctoral student, who is doing a research study into the health economics of dementia care, is late handing in. “She has to keep doing a 3000-mile journey to [a distant country] because her own mother has worsening dementia and the care co-ordination can’t always be done at a distance”.
These are some of the ‘warm stories’ shared over a very fine dinner after Martin Knapp’s lecture on integrated care, which was subtitled “lessons from research and practice”. As Director of the National Institute of Health Research’s School of Social Care Research, he was uniquely qualified to cover the topic. Introducing him, Professor Mary Daly had observed that whilst health care tends to be viewed as a matter of national priority and professional commitment, social care is generally seen as a matter for local administration and – predominantly – family commitment. Their respective funding streams have – at least until recently – been separate. “Integration” between them does not come naturally.
Professor Knapp’s authoritative presentation (view his slides here) focused on what might be classified ‘cold research’ on integrated health and social care – the objective data that both corroborated and contrasted with the subjective stories of human commitment and suffering exchanged later. His talk was packed with robust theoretical models, rigorously-conducted empirical studies, descriptive statistics and estimates of the effect sizes of specific interventions.
He began with an economic (and as he admitted, unrealistically linear) model of integrated care, which, roughly transcribed, consists of resources (taxation, insurance, out of pocket), purchaser budgets (health, social care), provider budgets (hospitals, care homes, community care), resource inputs (staff, buildings, medication), outputs (services), which, along with non-resource inputs (e.g. social environment, staff attitudes) shapes outcomes (e.g. fewer symptoms, quality of life).
This inputs-outputs model is under strain, argued Martin, because of well-documented and mutually-reinforcing trends: ageing population + rising expectations + emergence of new technologies that extend the lives of the frail and needy + widening inequalities + growing mismatch between funding and activity in public-sector services. We can measure the strain in metrics – for example, 37% of DETOCs (“delayed transfer of care”) in patients ready to leave NHS acute hospitals are now explained by the code “waiting for care package”.
Around 40% of the over 80s still live completely independently, and another 40% need some care but less than daily. The remainder require some form of daily care in their own homes or residential care. Shrinking finances mean that resources are almost invariably targeted towards “high need” cases for whom all the stops are pulled out to prevent hospital re-admission, leaving “low need” cases to – and I quote from the speaker – “fend for themselves”. The latest figures suggest that more than two-thirds of people needing care either get no help at all or rely exclusively on friends and family. Approximately one-fifth receive council-funded care and the remainder are what are known as “self-payers”, purchasing care from private providers.
Several years of strategically-directed NIHR research funding have begun to address the “what works?” questions in public sector social care. There is now a section of guidance from the National Institute of Health and Care Excellence (NICE), for example, setting out the evidence base on topics such as supporting transition from hospital admission to community support; management of older people with social care needs and multiple long-term conditions; and best ways of delivering home care.
An emerging evidence base on integrated care, especially one that carries the prestigious NICE kitemark, is surely a milestone to celebrate. But few people in this audience seemed confident that research-based guidelines, however “robust”, are going to solve the challenges of integrated care any time soon. There seemed to be four main reasons for their skepticism.
First, the social care evidence base remains sparse. There are eight social care guidelines on the NICE website compared to several hundred healthcare guidelines. And as Professor Knapp observed, whilst researching activity in the public sector is now feasible and ongoing, the evidence base on the varied experiences of “self-payers” with multiple small private-sector providers remains virtually non-existent – and will much harder to build.
Second, much of the social care evidence base appears to be politically contested. Martin gave a very diplomatic account of how government ministers responded when told that, by and large, older people do not seem either keen or able to manage their own care budgets. The response seemed to be that rather than scrapping such budgets, perhaps older people might be “supported” or “taught” to manage them. Personal care budgets, it seems to me, are a key part of prevailing ideology, and as social policy researchers demonstrated long ago, this kind of evidence never did flow smoothly into practice.
Third, there is a philosophical question about what kind of research we need to inform decisions about integrated care. Professor Knapp talked a lot about randomised trials, and although he acknowledged the need for other forms of evidence, some audience members were quick to challenge his implicit ‘hierarchy’ in which the controlled experiment took precedence over more naturalistic designs (e.g. in-depth case study) or computer-supported microsimulation or modelling studies. Even when experiments are justified, said one eminent economist in the audience, many randomised trials in the integrated care literature seem embarrassingly crude (I was reminded of the “telecare on” versus “telecare off” Whole System Demonstrator study; such studies usually lack a clear theory of change and pay little or no attention to mediating and moderating variables. As ever with academic paradigm wars, no agreement was reached.
The final reason why research that seeks to produce generalizable answers to the abstract question “what works?” through systematic (and necessarily somewhat slow) inquiry may not provide the answer to integrated care is that the current UK situation is evolving too rapidly. As one audience member put it, “Because services are continually being cut, the information we have [on what is available] may be out of date by the time we try to use it.” Social and demographic changes are also occurring more rapidly than at any time in history.
Sara Livadeas pointed out, for example, that a high proportion of both council and private-sector carers are from EU countries and paid at or marginally above the minimal wage. They live in a twilight economy, sending a proportion of their earnings back to their home country to support relatives there. Overnight on 24th June 2016, the exchange rate (pounds to Euros) dropped by more than 10%. Many such workers are now moving to other EU countries to seek a salary in Euros rather than risk a further drop in the value of the pound. We simply do not have enough ‘home-grown’ carers to fill their places. Research on “what works” can stack up on the NICE website but it won’t steady the shifting practical and political sand on which integrated care policies are currently being built.
The uncertainties of Brexit provided a good cliffhanger on which to suspend discussion until the next Care Initiative seminar, which will occur on 23rd November at 6pm with Professor Nicholas Mays who will present evidence from the recently-completed evaluation of the NHS England-funded ‘Integrated Care Pioneers’.