Personal budgets in mental health: power to the people?

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The idea of personalisation is about putting service users and carers in the “driving seat” of their care, and offering a service that can be tailored to their individual needs and preferences instead of a traditional “one size fits all” approach (NHS England, National Voices and Think Local Act Personal, 2014).

Personalisation is central to the Recovery movement. One aspect of personalisation is “Personal Budgets”.

So what is a personal budget?

The aim is to receive funds directly, to then use to support individual health needs, in order to give more choice and control. People either have the money paid directly to them, and then use this to pay for services (such as the services of a personal assistant to help them with independent living), or the budget can be allocated straight to a service that the person has identified as meeting a specific need.

Personal budgets were first developed in social care for people with physical disabilities, and have been widened to health budgets for other groups who have long term conditions, including people using mental health services. Interestingly, whilst the uptake of personal budgets has been high in people with physical disabilities and learning disabilities, it has been less popular with people who use mental health services.

Martin Webber and colleagues have been right to question what evidence exists for personal budgets for people who use mental health services. Like the concept of peer support, it feels like an intuitively good thing, but it’s also important to have a sense of what defines a personal budget; how it impacts on a person’s recovery outcomes, and also (important more than ever in these years of austerity) whether it is an efficient and cost-effective use of distributing health resources.

So, Webber et al undertook a systematic review to see if personal budgets improved the outcomes of people who use mental health services.

Personal budgets are now quite widely used, but do we know if they help people going through mental health difficulties?

Personal budgets are now quite widely used, but do we know if they help people going through mental health difficulties?

Methods

Stakeholders (including service users, carers, academics and clinicians) devised and agreed the search terms and inclusion criteria to be used.

The search was undertaken in 15 databases (although these are not listed). A random sample of 20 papers were screened by another researcher to check for inter-rater reliability. Disagreements were settled by group discussion. They also hand-searched journals based on references in papers found by their electronic search. Duplicates were removed before screening.

Results

An initial total of 17,193 papers were identified (after duplicates removed). At stage 1, titles and abstracts were screened and the reviewers found that 16,950 papers were ineligible. At stage 2, a total of 15 studies were included for data extraction. Only 2 of these were randomised controlled trials, a further 2 were quasi-experimental, and the rest were qualitative studies.

Quality assessment

The Cochrane Risk of Bias tool was applied to the RCTs and the quasi-experimental studies. CASP checklists were used to appraise the quality of the other studies. All of the included studies demonstrated some risk of bias.

From the search that was undertaken in 2013 (date not given) now around 2 years old, the state of evidence for personal budgets for people who use mental health services is in its infancy. The main observation is that there is a distinct lack of robust trials of personal budgets, with only 2 of the 15 included studies being RCTs.

Themes from synthesis

  • Choice and control
    • 4 studies demonstrated an increase in perceived control and choice by people using personal budgets
    • 1 study found users felt less in control
    • 2 studies found an increase in flexibility about how personal budgets could be used, but also a level of uncertainty in some service users, particularly when they found it hard to say what their needs were
  • Impact on life
    • Personal budgets improved quality of life, community participation and sense of hope and recovery
    • 3 studies reported benefits to mental health
    • 2 studies reported generally better relationships with people
    • 1 study reported a positive impact on employment, another showed no impact on employment
  • Use of services
    • None of the studies reported increased use of inpatient services
    • 5 studies reported a decrease in the use of community services
  • Cost-effectiveness
    • Only 2 of the 15 studies looked at this
    • 1 study showed personal budgets were cost-effective, and the other showed that personal budgets were cost-neutral.
These interesting but inconclusive findings highlight the need for more research in this area.

These interesting but inconclusive findings highlight the need for more research in this area.

Conclusions

The reviewers concluded that the included studies indicate some positive benefits of personal budgets, but the methodological shortcomings of the studies limit the conclusions that can be drawn.

They also point out the potential for selection bias, in that those service users who are “less complex” may have been recruited to studies. There is a need for high quality experimental studies to inform personal budgets policy and practice for people with mental health problems.

Limitations

It would have been useful to have had some information in the paper about the reasons why studies were excluded from the review at stage 1, as such a large quantity of papers were discarded at this point. However, it’s important to appreciate that the broader the literature search, the less likely it is to miss potentially eligible papers.

Leafing through thousands of articles comes with the territory if you are a systematic reviewer.

Leafing through thousands of articles comes with the territory if you are a systematic reviewer.

Reflection

There are many questions that need to be answered around personal budgets in mental health.

We need to understand why there has been such slow uptake of personal budgets in mental health, not just for service users but amongst service providers too, where there remains a need for a cultural shift from one of paternalism to truly person-centred care.

We also need evidence that personal budgets are an effective way of allocating resources and promoting choice and control.

One could argue that personal budgets are not an intervention in of themselves, but simply a method of allocating resources. The challenge in terms of evidence is that people use personal budgets in a variety of ways.  One idea would be to group personal budgets into sub-groups (create a typology) and make some comparisons i.e. getting out and about (transport), sports and exercise, personal assistant, additional therapy or treatment (i.e. private counsellor), social activities, and hobbies. Even with this, there are obvious cross-overs (a sporting activity could also be construed as social).

One thing is clear: choice and control doesn’t have to mean holding the budget itself. The most important thing is that people decide what’s right for them and their recovery at the time. The system needs to be flexible and allow for adjustment as needs change, and people need adequate support should they choose a personal budget.

Flexibility

Flexible systems are key to help people as their needs change.

Link

Webber M, Treacy S, Carr S, Clark M, Parker G. (2014) The effectiveness of personal budgets for people with mental health problems: A systematic review. Journal of Mental Health 23: 146–155

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Liz Hughes

Liz Hughes

Liz is a mental health nurse by clinical background, and is Professor of Applied Mental Health Research at the University of Huddersfield, which is a joint appointment with South West Yorkshire Mental Health Partnership NHS Foundation Trust. She is also a visiting senior fellow in the Mental Health and Addictions Research Group led by Professor Simon Gilbody at the University of York. Her role is to develop a programme of funded health research (related to multi-morbidities in mental health) as well as build research capacity. Her clinical experience spans acute psychiatric inpatient settings as well as in inpatient and community addictions treatment services in London and the south of England. Her main research (and teaching) interests include dual diagnosis of mental health and substance use; physical and sexual health and relationships in people with serious mental health problems; and workforce development in mental health. Liz has published and presented widely related to her interests and has worked on a range of workforce development products including strategy documents, training resources and E-learning for dual diagnosis for the Department of Health which is cited as a resource to support NICE guidance for Psychosis and Substance Misuse. She is particularly passionate about improving the quality of care that marginalised groups of mental health service users receive, and developing the capabilities of the workforce to address this.

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