Personalised care, individual budgets, self-directed support: what’s the thinking?

More than a decade ago, the user movement exploded on to the scene and began a long revolution whose effects are still being felt. It marked the end of the idea of people as passive recipients of welfare, spoon-fed services by the state, and heralded something entirely new: the idea of people as masters of their destiny, able to exercise choice and control over their lives. That, at least in social care, was the theory.

The truth was more prosaic. “User involvement” became a buzzword, user groups sprang up locally and nationally, and people who had never felt happy taking whatever they were given found themselves drawn into the planning and delivery of services. Legislation on direct payments, which the user movement had campaigned for, was passed by parliament. But progress was patchy and sometimes tokenistic, with well-organised groups of disabled people often making an impact where others failed.

Fourteen years after full implementation of the NHS and Community Care Act 1990, which ushered in these changes, the old-fashioned framework of welfare as a poorly funded, safety net service still survives. Take-up of direct payments languishes at about 50,000 recipients.

New language

It gave rise a few years ago to a new round of soul-searching in the think tanks, much exercised by how to break through the institutional inertia that seemed to have stalled the reforms. A new language, involving words like “personalisation” and “self-directed support” began to emerge.

The intention was to put the needs of the person before the needs of services. Users would be given the money and power to direct their own care with the state, they would be “co-producers” of their own outcomes. But some are asking whether the latest jargon has any real substance or whether it’s just a way of buffing up the tarnished hopes of a generation of users.

The political will certainly appears to be there. Care services minister Ivan Lewis regularly restates the commitment to personalisation first given in the 2005 green paper Independence, Well-Being and Choice, and next month’s government spending review is likely to provide a road map for it. It can also be seen as part of a broader policy to rebuild communities and awaken civic activism in the context of what former Downing Street policy adviser Geoff Mulgan and his one-time boss Gordon Brown like to call the “servant state”.

“In the case of therapeutic services,” Mulgan says in his recent book Good and Bad Power, “the servant’s job is to change the master, to make him or her healthier, fitter, happier. So true service for states implies a profound rethinking of service models towards shared production and responsibility” This, he says, is likely to involve smaller-scale providers, more “co-creation”, and more personal responsibility.

Jon Glasby, reader in health and social care at Birmingham University, speaks of a “partnership of equals” between users and practitioners that should have resulted from the 1990 Act but was thwarted because employers guarded their power jealously. Personalisation is a second chance to get it right. “This is not old-style user empowerment dressed up this is new,” he says. “Practitioners have knowledge of the system and its resources, while the individual is the expert in their own life and their own condition. Co-production is the two coming together to design appropriate services.”

Many pilot projects have been set up to test the pillars of personalisation such as individual budgets, which service users are given money to spend freely on their own support, and self-assessment, which captures the idea that users know best about their own needs.

The In Control project pioneered the approach, launching four years ago as an experiment to put people in charge of their support and the money to pay for it. It was controversial at the time because it was not user-led, but evaluations have shown that it produces better outcomes than traditional services and sometimes at less cost.

“If you need help it’s common to find that you have lost control of your life and you can’t achieve the things other people take for granted,” says John Waters, technical director of In Control. “In fact, the current social care system seems to ensure that people who need help are excluded from active citizenship.”

Users as citizens

For In Control, the key to personalisation is that users are reinstated as citizens, active economic and social participants in their communities. But are they citizens or merely consumers choosing among the “products” in a social care supermarket? And does it even matter?

The growth of consumerism has been evident as public sector talk of customers, value for money and choice has become common. Glasby thinks it matters hugely whether the goal of personalisation is consumerism or citizenship. Consumerism focuses on good service and a supple response to customers’ needs they can take their business elsewhere, but so can providers if the market is weak. Citizenship, by contrast, puts the onus on human and civil rights to a reasonable quality of life.

“If as a public body you take the consumer view, you’re likely to focus on efficiency and keeping down costs,” Glasby says. “If your interest is in citizenship, you’re likely to see direct payments and individual budgets as honouring a fundamental moral obligation to help citizens meet their needs.”

Glasby says it is so far unclear which of the two principles the government has in mind. Peter Beresford, stalwart of the user movement and professor of social policy at Brunel University, is suspicious. “There’s a lot of political pressure for personalisation to be like a magic bullet, achieving better services for less money,” Beresford says. “People like [ex-care services minister] Liam Byrne have made it very clear that this can be a more economical, more efficient way of providing services. I’ve always been worried about this quest to find savings from personalisation. If we do that, all the good things about it will be put at risk.”

Much may depend on how seriously councils are able to take the resource allocation system developed by In Control and at the heart of individual budgets. More than 100 councils have signed up to In Control’s ethical framework, including its insistence on “sufficiency”, meaning that individual budgets should be properly negotiated and have enough money in them to enable users to be full and active citizens. It is a moot point whether councils’ own budgets will be up to this challenge with an imminent spending squeeze, but Waters reports a genuine desire among the practitioners and managers he has worked with to empower people.

Even where local authorities have tried, they have had a hard time selling the concept of direct payments to older people and people with mental health problems, and some wonder whether it will be any different with individual budgets when the people expected to manage them have to be in ever greater need to receive help in the first place. Councils that have invested in quality intermediate care will probably find it easier to build capacity among frail older people, having had some success with reablement programmes intended to help them regain skills and confidence.

Personalisation has an affinity with another concept beloved of the think tanks: social capital, the networks and resources that sustain people in their communities. Service users should be able to spend individual budgets in a way that stimulates existing social capital – relatives, friends, neighbours, lunch clubs, and so on – rather than exploit it as traditional services have done.

Despite the new vocabulary, older social workers may sense faint stirrings of the community social work that once attracted many of them and was believed to have been killed off by the Thatcher government. In the “partnership of equals”, their role will be to act as advocates and advisers, informing self-assessments rather than doing the job themselves.

Sceptics will ask why personalisation should fare better than community social work did. Academics Melanie Henwood and Bob Hudson, whose report on personalisation is expected to be published by the Department of Health in the autumn, say that “with the right strategic support from the centre”, the transition should take between five and seven years. They are optimistic, seeing it as the “first genuine attempt to empower service users”.

“Personalisation is about a major paradigm shift,” Henwood adds. “It is probably the most radical change in social care for 60 years.”

Related articles
Essential information on individual budgets
Service User special issue
Where now for user involvement?

Further information
Green paper 

Contact the author
Mark Ivory

This article appeared in the 13 September issue under the headline “Ground control”