Paving the way for the arrival of personal health budgets

Mark Hunter asks whether the public is ready for the next level of personalisation: direct payments for healthcare

Social care professionals are no strangers to the concept of personalised budgets. Direct payments have been offered to service users since 2005 and, while uptake has been slow in many areas, millions of people have now received money to buy their own care.

But, across the ever-diminishing divide to healthcare, the idea of allowing patients to pay for their own treatment is almost anathema. So much so that it is currently illegal to give NHS cash directly to a patient.

This is about to change.

The Health Bill currently progressing through parliament will legalise direct payments in healthcare, paving the way for 70 pilot projects that will test the use of personal health budgets as a way of giving NHS patients greater choice and control over the services they receive.

The idea has received a mixed reception. Professional groups are wary of handing over the purse strings to their patients. The British Medical Association says that direct payments will “further establish the idea of healthcare simply as a commodity”; Unison fears the move may “ultimately lead to means-testing”; and The King’s Fund has listed several reservations, including concern that patients might not spend the money wisely or be tempted to scrimp on services now to pay for greater needs in later life. Even the Department of Health’s own evaluation showed that, while younger disabled people welcomed the idea of individual budgets, many older people felt the scheme would be too complex and bureaucratic. Nevertheless, patient and service user groups, such as the MS Trust, Alzheimer’s Society and National Voices, have broadly welcomed the move as a way of ensuring that people are given more power and control over the services they use.

With the pilot projects poised awaiting the necessary legislation, it is unclear how personalised health budgets will work and how they will affect the interface between health and social care. However, a snapshot of the future has emerged from work being carried out by the social enterprise In Control.

Self-directed support

For the past 18 months, In Control has been working with 37 primary care trusts, health organisations and their respective local authorities to develop systems of self-directed support, in which service users are offered greater control over their health and social care. Rita Brewis, In Control’s health lead, has no doubt that the introduction of personal health budgets will be another step towards a system in which people are seen as individuals rather than categorised according to their needs.

“At the moment, it makes no sense that people with health and social care needs are allowed to have control over some parts of their lives but not others,” Brewis says. “We are whole people; we don’t split up into convenient health and social care categories.”

However, she stresses that personalised health budgets should not simply be an attempt to graft social care’s experience on to healthcare. “I don’t think that anyone would claim that we have got everything right with direct payments,” she says. “We are still learning, and what works in social care might not work in healthcare.”

In particular, there is the issue of whether patients have sufficient knowledge and experience to make complex decisions over their healthcare (see diagram).

Piloting personal health budgets

One of the local authorities working with In Control is Redcar and Cleveland, which will also soon be piloting the use of personal health budgets. The authority has recruited several citizen champions to ensure that service users and their carers are at the heart of the system.

According to personalisation manger Debbie Sheldon, the move towards self-directed support has required a significant culture change among the region’s health and social care staff.

“The idea is to get away from organising community care like a sausage factory and move towards treating people as individuals,” Sheldon says.

This involves moving away from the social-worker-knows-best-approach and devolving power to the care user. As a result, social workers are now spending less time filling in assessment forms and more time in advocacy and brokerage.

“That might terrify some social workers, but it gives us a chance to get back to what social work is really about rather than filling in 40-page single assessment forms,” Sheldon says.

Patients to benefit from the new approach so far have included those with dementia, chronic obstructive pulmonary disease and anxiety, although Sheldon is reluctant to set limits according to diagnostic criteria.

Universal system

“One thing we’ve found is that once you start fixing one bit of the system it has massive implications right across the board,” she says. “So the system needs to be universal, involving all the services. Personal health budgets will help this, but we’ve been surprised at how much we can do under the current system by being more innovative.”

In Nottingham, the use of personal health budgets has been trialled by the intermediate care service for people with dementia. This will now be extended under the NHS pilot project to focus on long-term neurological conditions being managed by the community neurology service.

According to the pilot manager, Gemma Newbery, the experience so far has been positive, although it has highlighted the need for advocacy and advice among patients and their carers.

“In dementia, often the carers don’t necessarily want more choices and control,” Newbery says. “They may feel that they already do enough for those in their care and don’t want even more responsibility. So they will need a great deal of extra support to work out ways in which the personal budget can make their lives easier. A lot of our carers were dubious about the idea to start with but most have now welcomed it and found that it can help them a lot.”

The project also proved challenging for the team of social workers, nurses, occupational therapists and physiotherapists involved. “They are a multidisciplinary team that have been working together for some time and they work really well together,” says Newbery. “However, personalisation is a massive cultural change for everybody involved, and it will take time to get used to it. As a professional you are used to making decisions for other people so it’s a big change to turn that relationship around.

“Health budgets will need a lot of front-loading and organisation to make sure that the teams are in place and properly trained.”

For more on In Control 

For more on personalisation 

One of the lessons to emerge from the In Control programme has been the development of a quadrant framework to guide how much autonomy patients should receive. Interventions and treatments are divided into those for which there is strong clinical evidence of efficacy and those for which the evidence is less reliable. A further division is made between interventions that enhance life and those that extend it.

Interventions that fall into the top right (red) quadrant are best left to the experts while the top left (blue) square is “the natural territory of self-direction” as it is up to the service user to decide what improves their quality of life. The bottom two quadrants include interventions where both the professional and the user may lack sufficient evidence to make a definitive judgement. This should result in “co-designed solutions”, where user and professional decide together on the best way forward.

Published in the 10 September 2009 edition of Community Care under the headline A Budget Too Far? (Pic: Simon Ryder/UNP)

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