The personal health budget pilot programme was launched in 2009 in 64 pilot sites around the country, 20 of which have been studied in-depth by a research team led by Julien Forder of Kent University and the London School of Economics. The evaluation focused on people with chronic obstructive pulmonary disease (COPD), diabetes, long-term neurological conditions, mental health, stroke and those in receipt of NHS Continuing Healthcare (people with complex care needs and severely disabling conditions). For the most part annual budgets were fairly small – about half the total sample of 1,171 had less than £1,000 to spend, but 78 people were allocated budgets of more than £50,000 and 7 people in the 20 sites spent more than £150,000. Many participants spent their budgets on non-traditional, non-NHS services that spanned both health and social care needs.
The researchers found that use of personal health budgets was associated with significant improvements in quality of life and psychological wellbeing. Those with the most disabling conditions benefited most, perhaps because they were allocated the largest budgets, but analysis of direct and indirect costs suggested that the scheme as a whole was cost-effective, in other words the quality-of-life benefits were achieved at no greater overall cost to the NHS.
Buoyed by this good news, Minister of State for Care and Support Norman Lamb has confirmed the previously announced national roll-out of personal health budgets. By April 2014 the intention is that up to 56,000 people in receipt of NHS Continuing Healthcare will be offered personal health budgets and clinical commissioning groups are being encouraged to extend this offer to other people with long-term conditions.
The study contains important lessons for those responsible for implementing the scheme at a local level. There was considerable variation between the pilot sites in how personal budgets were administered. Best results were seen in those sites that provided clear information to patients on the amount they could spend, offered greater flexibility in what they could spend it on, and gave more choice in how the budget was managed. Those sites offering less information, flexibility and control did not achieve significant improvements.
The outcome measure that showed the greatest benefit from personal health budgets was the Adult Social Care Outcomes Toolkit (ASCOT), which explicitly measures the amount of control people have over their daily life, as well as factors such as cleanliness and comfort, nutrition, personal safety, social participation, meaningful activities, and dignity. Personal budgets were not associated with better health outcomes when assessed by EQ-5D, the Department of Health’s favourite PROM (patient reported outcome measure), which asks about mobility, self-care, usual activities, pain or discomfort, anxiety and depression.
The causes and consequences of this discrepancy require some thought. It may be the case that the EQ-5D’s emphasis on physical functioning (problems walking about, problems washing or dressing, problems performing usual activities) makes it less sensitive to the effects of interventions designed to improve wellbeing for people with long-term conditions. If so, those responsible for the NHS Outcomes Framework should look again at the measures they will use to assess outcomes. EQ-5D, which is included in the national general practice patient survey, has been selected for measuring achievement of the Domain 2 target for long-term conditions. Perhaps ASCOT, with its focus on autonomy and dignity would be a better choice.
We should welcome any policy initiative that improves the lives of people with severely disabling conditions, especially if this is achieved without detriment to other NHS priorities. But is personal budget holding the only way to achieve greater freedom, responsiveness and control for patients? Certainly not. The commitment in the NHS Constitution to empower all patients to make decisions about their treatment and care will not be achieved by budgets alone. This study offers further evidence of the benefits that could be gained if the NHS was to get really serious about shifting more control to patients.
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