Three years ago, just 60 adult service users in England who needed care and support had their own personal budgets. Today that number has rocketed to 46,000 involving 79 different local authorities – an indication of just how far personalisation has come. Today marks another significant milestone in this new system with the official launch of the government's Right to Control initiative, where eight "trailblazer" local councils with £7m funding, will aim to give service users the right, rather than just an entitlement, to control their own services and budget. But while personal budgets have increased, and an increasing body of evidence is building up to show the benefits personalisation can bring to individuals and the wider community, uptake across England has been patchy.
A recent roundtable hosted by the Guardian, in association with social enterprise In Control considered why this was happening and what needed to be done to break down any barriers and help reach the government target for 30% of all adults who use care and support to have their own personal budget by 2011. The roundtable was conducted under the Chatham House rule, which guarantees anonymity of reporting to encourage frank debate. This report therefore reflects the key themes of the discussion, without attribution.
One participant spoke about the significance of giving service users a defined right to control their own budget and care. The person said: "Disabled people and user organisations have been saying for years that what has been missing in all of this is our right to have choice and control. Right to Control trailblazers will try to bring together a system which is based on rights [and] an understanding of the significant cultural change that you have to bring about in order to deliver the rights. Both of these are missing at the moment."
The roundtable was told that as local authorities have grappled with introducing personal budgets, they have focused more on systematic change than on looking at how the role and contribution of the service user needs to change. This has led to service users being allowed their own personal budget, but being told by their local council how to spend the money.
"It means that a lot of the ethics of people being in control and getting that level of flexibility and creativity is being lost and that is a worry," one participant said. But it was also pointed out that it is individual people within organisations, and good leadership within those organisations – rather than the organisations themselves – which is behind those cases where personalisation has been a success. Said one speaker: "My experience is that organisations don't do this – it's the people that do it. It's people who make the change." The dilemma, then, is what happens to those success stories once those committed individuals move on to a new organisation? Another speaker spoke about the need for good leaders: "Leadership development brings together people, families and professionals so that they collectively make relationships and build solutions."
Meeting expectations
There is a growing bank of evidence, some of it logged by In Control, which shows the benefits of personalisation to service users. One speaker told the roundtable that when personalisation works well, the benefits can be "massive". Another participant added it can enable an individual to live "an ordinary life" where "you aren't being told what you can or can't spend the budget on and who you can employ or not."
But when personalisation fails to live up to expectations it brings frustration and disappointment. One participant said: "[Direct payment] has enabled me to go to university but it hasn't enabled me to spend [the money] on what I needed to." Lack of understanding between health and social care professionals about personal budgets is an issue. The roundtable heard: "I still have to have endless assessments. I have to fight constant battles and I can't live my life the way I want to." Another speaker agreed that "people are assessed to death." Personalisation, the person said, is not about "entitlement to assessment" it is about "entitlement to cash and information."
It may be the traditional reluctance of health and social care professionals to talk to each other, rather than opposition to service users having more control over budgets and services, that has created a barrier to successful personalisation. One speaker said: "People aren't being encouraged to come together to help the person as a whole." Professionals are, on the other hand, encouraged to put the needs of their organisation ahead of the needs of a service user, according to another participant.
In social services, the culture is dominated by the need to control budgets, said one speaker. To expect social workers to adopt new ways of working within this kind of culture and to push for personalisation was "problematic because they are incentivised not to do it," another participant said.
But national evaluation of the impact of personal budgets shows that service users achieve better quality of care without extra costs. Giving people control of their care and spending brought "better outcomes", the roundtable was told. The issue about the success of personalisation is not about money, said one speaker. "I can never say there isn't enough money, it's just that it's not been spent in the right way."
The development of personal health budgets, which are currently being piloted by the NHS in England, could have the double benefit of boosting joint working and speeding up the whole personalisation agenda, the roundtable was told. And if personal health budgets were included in the Right to Control programme – which will bring together six different funding streams but none of them health – all the better, said one speaker. "I would like [personal health budgets] to be ratcheted in as well because, for some people, it's a significant funding stream and it would make the join across health and social care work better."
Implementation challenges
But one participant questioned how well the NHS was equipped to cope with the concept of a patient having their own budget and then deciding how to spend it. "The experience of trying to implement it in social care has been tricky enough. My experience from the NHS is that it's as far from personalised as it could be."
Another factor influencing the agenda is that not all service users have their own personal budget. One participant said: "We are trying to run one system alongside another – it just doesn't work. There is plenty of evidence that personalisation works and we need a big shift towards that system. We either go for it wholesale, which is what I want because it makes such a difference to people, or we don't."
Another barrier to successful personalisation is the mis-held belief that personalisation is about "individualism". Said one speaker: "I think that is why people feel uncomfortable about it. Personalisation is in fact the complete opposite of that. Personalisation is about strong communities, it's about making use of all those links in the community all together – families and friends – and making use of the community opportunities."
Participants were worried that some well-established care and support services may become unviable in the future as personalisation expands – not because of spending cuts, but because service users with personal budgets decide to take their money elsewhere. The options then would be to persuade those people who still want the service that it may have to be delivered differently, encourage them to adopt personal budgets too, or alternatively continue to run a service people no longer wanted which would be a waste of public money. One participant warned: "That will be the most challenging part of this programme."
Key to winning the argument will be to persuade the public, and the media, that personal budgets bring better outcomes for people. That could mean, for example, getting the message across to the general public that spending a personal budget on paying for somebody to accompany a service user to a football match is money well spent. The roundtable was told that in the US that argument has already been won, as the idea of peer support is well established, especially among users of mental health services where it has been shown to "lead to enormous improvements in people's quality of life." In the UK though, that debate still needs to take place. One participant spelled out the challenge for the future: "We need to get the message out that fun works." Another added: "We need to think about how to sell the argument that it's OK to have fun with taxpayers' money."
At the table
• David Brindle, chair Public services editor, the Guardian
• Gavin Croft, Personal budget recipient, Oldham
• Sophia Erksine, Young disabled persons' leader
• Jim Mansell, Professor of learning disability, Tizard Centre, University of Kent
• Julie Stansfield, Chief executive, In Control
• Sue Bott, Chief executive, National Centre for Independent Living
• Karen Croft, Gavin Croft's wife and carer
• Julia Erksine, Sophia Erksine's mother and carer
• Jenny Morris, Consultant, Office for Disability Issues
• Caroline Tomlinson, Consumer support director, In Control
• Peter Beresford, Director, Centre for Citizen Participation, Brunel University
• Chris Hatton, the Professor of Psychology, Health and Social Care, from Lancaster University
• Mark Harper, Shadow disability minister, Conservative party
• John Waters, Technical director, In Control
• Clare Gates, Consultant child and adolescent psychiatrist, NHS and private practice
• Lynne Elwell, National lead, Partners in Policymaking
• Diane Louise Jordan, Broadcaster and trustee, Prince's Trust
• Martin Routledge, National delivery programme manager, Putting People First, Department of Health
Roundtable report commissioned and controlled by the Guardian. Discussion hosted to a brief agreed with In Control. Paid for by In Control. For information on roundtables visit: guardian.co.uk/supp-guidelines
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In Control: in-control.org.uk
