Disintegration

This blog was kindly published by the New Local Government Network last week here: Forget integration: we need to disintegrate our public services – New Local

Every few months I find myself in a debate about integration. Long-standing health and care watchers like Richard Humphries, previously of the King’s Fund, have pointed out that this has been happening for as long as there have been separate health and care systems, with plans to integrate the two appearing every few years – dozens and dozens of them in 70 years – but none of them working.

I believe this is because we always start from the wrong question. We look at complex NHS systems and at bureaucratic social care systems and ask, How can we join these bureaucracies up better?

As ever, it’s worth thinking about what it would look like to take a strengths– or asset-based approach to this challenge. This would mean starting with the question, “What does a good life look like for people who use or might need health or care services?’ And then, “What role do services have in enabling those people to live safely and well at home?’

The answers to those questions need to come from people themselves- particularly disabled people and older people, and their families. They need to be conversations which include everyone – the people who make most use of health and care services now, but also the groups and communities who are most at risk of being excluded from or poorly-served by those services.

So we need our national and local leaders to do two things:

  1. Set a new shared goal for our dis-integrated public services. In my book, I suggest a single government department for community services bringing at least health, care, housing & local government services together, and a single goal of creating wellbeing and resilience (which is the capacity to maintain wellbeing through challenge and crises).
  2. Share power through insisting on co-production and resourcing the citizen-led organisations which are needed to coproduce with everyone.

How would we know this was working? I can think of three useful tests for integration – I’d be interested in what you think of them:

1. Can the system work with households as well as individuals? This tests whether services for people with different needs (and often different ages, such as the disabled child and their parents who are finding it challenging to care for them) can organise themselves around the complexity of their lives, putting us in charge of how resources are used. Or do our lives look hopelessly messy to them?

2. Does integration reduce inequalities? If it doesn’t, then some services may be integrating with each other, but they are not integrating with all of our communities, and community organisations.

3. Can I own and share my own information? This is a process-y point, but it’s a good sign of whether we are aiming to help organisations integrate their existing information systems, or if we are trying to help individuals and families take charge of their own information, and share it with the services which are valuable to them. Having to give the same information over and over is perhaps the most common complaint about dis-integrated systems. It’s not just inconvenient – that information is sensitive, personal or can be deeply painful – so repeating it shows that our dignity is not at the heart of a service’s thinking and actions.

So real integration will be both simpler (not having to make sense of existing labyrinthine bureaucracies) and harder (services accepting new goals and less power). We can replace systems which spend lots of time and money assessing people, but often don’t have a service, let alone the right kind of support, at the end of it, with simpler and more human approaches like Local Area Coordination, which put the rights kinds of help in the right places.

Just as the really hard bit of scaling up innovation is scaling down what we do now, building new integrated systems requires us to recognise that what is needed for some existing monolithic bureaucracies is, in fact, disintegration.

People are the most effective integrators

At a discussion about integration the other day, someone talked about the four agencies which came to see her parents to support her Mum who has dementia. Each with their own agenda (continence, aids and adaptations, homecare etc) and each demanding the same set of information from the lady who now struggles to communicate clearly and her husband who is at his wits’ end.  We’d all see that as wrong, but what to do?

If your world view is that of a service provider you may well suggest the solution to this is for the services to share their data. To do this, of course, you need to align everyone’s IT systems. This will cost £10bn and collapse in miserable failure about five years later.

Looking at this problem from the family’s point of view, however, you might decide that the key thing is that, if each agency wants a similar set of information, the information gathered by the first one needs to be given to the individual or their family, on a sheet of paper will do, but you could throw in a USB key as well if you want to get technical, and the family can then show that information to the next agency, who can add their own sheet if they’ve collected anything new. These days you can capture information in an instant via a photo on a smartphone and then translate that info into the agency’s particular format if they need to.

It’s a simple, virtually free solution, but there a couple of quite deep cultural changes implicit in it. The first is that an individual or family can and should take ownership of their own information, and by implication share ownership of their care package. The family might lose it, I can hear some people saying. True, they might, in which case they will need to accept having to repeat themselves.

Another challenge is that this only works if the agencies are after roughly the same info, which suggests perhaps that they are all interested in similar things. This would be more likely to be true if they shared the same goals and priorities. It’s time to set one set of goals for all public services. I suggest the goal of helping people to achieve well-being, which handily has already been set as the goal for social care by the Care Bill. From that shared, holistic goal will come far better results in terms of integration than a hundred restructures.

Integration or co-operation?

I’ve been in a couple of roundtables recently in which the Labour party has outlined their plans for integrated care. It’s fairly broad and high level stuff at the moment, but a key part of their proposal is that health, care and perhaps other aspects of the welfare and support system will be integrated with a single budget, with, as I understand it, councils in the lead on commissioning (presumably using the new Health and Wellbeing Board structures) and NHS organisations acting as delivery bodies, with less emphasis on increasing competition from independent providers.

It’s an alluring idea, which addresses a split between health and social care which has never ‘worked’ and was hotly debated when the NHS was created in 1948. Back then, the NHS could focus on illness treatment and most people got any ‘social care’ they received from their families, not the state. Now the NHS and social care need to be effective and sustainable for massively increased numbers of people with manageable long term conditions, not short illnesses likely to be either treated or fatal.

I’ve blogged before about the need to integrate not just services, but the informal/unpaid support system and the formal/ paid service system. An integration of health and care will not automatically achieve this. A recurring phrase in today’s discussion, for instance, was ‘patient rights’. There was a little, but much less, about citizens (not patients) and shared responsibilities. It would be easy to integrate around the existing public services power bases of hospitals and professionals, not around individuals, families and communities. This would be to integrate illness treatment services, not health and well being (eco)systems.

The language of rights in relation to health and well being is interesting. Charities and politicians alike are more comfortable talking about rights and entitlements than about responsibilities. This can mean that charities contribute to ‘clientism’ and that politicians can’t deliver on promises. Continue reading

Joining up health and social care?

There’s been lots of discussion of the Nuffield and King’s Fund report on integrating health and social care, which came out this week.

Two personal thoughts on integration of health and social care: one is the view of Richard Jones, one of the most effective social services directors (and our newest Trustee), who says something like, Don’t ask us to integrate our structures, because we will. But it will take up all our attention and on past experience it’s doubtful whether end users will notice the difference.

The other is, do we need integration at the level of structures, at the level of communities (perhaps through GP practices and their colleagues commissioning jointly on a small scale), or at the level of the individual. If individual payment by results support contracts were based on a unified outcomes framework (across health and wellbeing) and if people with long term support needs had the opportunity to pool personal budgets awarded by both social care and the NHS, how much would it matter whether the area’s head honchos were part of one organisation, or just good friends?