Implementing personal health budgets within substance misuse services [final report]

Executive summary 1. The personal health budget initiative is a key aspect of personalisation across health care services in England. Its aim is to improve patient outcomes, by placing patients at the centre of decisions about their care. 2. In 2009 the Department of Health invited PCTs to become pilot sites to join a programme which would explore the opportunities offered by personal health budgets. The Department of Health commissioned an independent evaluation to run alongside the pilot programme to provide information on how personal health budgets are best implemented, where and when they are most appropriate, and what support is required for individuals. 3. Two pilot sites within the pilot programme explored whether personal health budgets had an impact on outcomes and experiences compared to conventional service delivery among individuals with substance misuse problems. Study design and methodology 4. The evaluation adopted a longitudinal approach, and included people with drug and/or alcohol addiction. 5. The study used a controlled trial with a pragmatic design to compare the experiences of people receiving a personal health budget with the experiences of people continuing under the current substance misuse treatment support arrangements. After applying initial selection criteria, in one pilot site people were randomised into the personal health budget group or a control group. In the second pilot site, the personal health budget group was recruited from patients of those health care professionals in the pilot offering budgets, and a control group was recruited from patients of nonparticipating health care professionals. 6. A mixed design was followed where both quantitative and qualitative methodologies were used to explore patient outcomes and experiences, service use and costs, as well as the experiences of those implementing the initiative. In total, an active sample of 166 participants was recruited: 119 in the personal health budget group and 47 in the control group. Within the active study sample, 55 participants had drug and alcohol addictions and 111 participants had an alcohol addiction only. 7. The qualitative analysis involved interviews with personal health budget holders and organisational representatives. Data were analysed using the framework approach, with the data organised by themes according to the topic guides used in the interviews. 8. The difference-in-difference approach was used to explore whether personal health budgets had an impact on an individual’s quality of life and relapse rates. The analysis subtracted an individual’s follow-up outcome scores from their baseline score. Due to the small sample size, the analysis did not include exploring difference-in-difference multivariate models and therefore we were unable to control for confounding baseline differences. The content of support plans 9. Among the personal health budget group, 103 support plans were returned from the two pilot sites. In terms of the size of the budget, 41 budgets were worth between £1,000 and £5,000 per year, while 4 budgets were worth more than £10,000. 2 10. The majority of care/support plans were managed notionally. While one of the pilot sites did have approval to offer direct payments, we did not find evidence this deployment was offered during the pilot programme. 11. Residential detox was the largest single cost category. The more innovative uses of the personal health budget included driving lessons, alternative therapies, leisure activities and educational courses. Enabling people to access community detox rather than residential detox could also be regarded as an innovative use of their budget. The impact of personal health budgets on relapse rates, quality of life and service quality 12. The shortened version of the Alcohol Use Disorders Identification Test (AUDIT-C) was used to detect signs of hazardous and harmful drinking. Difference-in-difference analysis indicated that individuals in the personal health budget group had reduced their excessive drinking at follow-up compared to those in the control group. Similar results were found with the change in drug consumption at followup. 13. Difference-in-difference analysis indicated that there were greater improvements in care-related quality of life (ASCOT) and psychological well-being (GHQ12) for individuals in the personal health budget group compared to those in the control group, although the difference was not statistically significant. 14. Individuals in the personal health budget group were more satisfied with the help paid for by the budget and the care/support planning process than those receiving conventional services. 15. While the quantitative results highlighted the positive impact of receiving a personal health budget, firm conclusions around the impact of personal health budgets compared to conventional service delivery could not be made, due to the small sample size. Views from patients 16. Qualitative in-depth interviews indicated that personal health budgets had a positive impact on service quality, relationships with health professionals and views on what could be achieved compared with conventional service detox delivery. 17. The importance of effective implementation was highlighted, both in terms of providing the necessary information to enable budget holders to make an informed choice and also to minimise any delays in the process of obtaining and using a budget. Individuals reported that delays could potentially lead to anxiety and distress. 18. A list of suggestions of possible uses of personal health budgets would have been useful during the support/care planning stage. 19. Personal budget holders reported a lack of after-care services available with this treatment route which could potentially have a longer-term impact on relapse rates. This desire for post-detox care to prevent relapse was especially prevalent at follow-up, when patients had completed their detoxification and required relapse prevention services. 20. Individuals receiving conventional detox services expressed more negative views of the relationship they had with health professionals and their experiences of services. Views from the system 21. Organisational representatives believed that personal health budgets had a positive impact on outcomes for budget holders: the way they accessed services, and to a certain extent the content or 3 quality of those services. Organisational representatives attributed these impacts to the personal health budgets enabling: increased choice and control for budget holders; increased flexibility; encouraging innovation and creativity; greater ‘person-centred’ care/support planning; and the opportunity to reduce costs by accessing alternative services or providers of services. 22. A number of challenges within the implementation process were mentioned by organisational representatives. These included: the length of time required to conduct the care/support planning process; the time point at which a personal health budget should be introduced; deciding what can and cannot be included, in particular considering whether the budget should be used for relapse prevention; managing attitudes to risk and the cultural change required for patients in the system; the logistics of managing multi-agencies involved in a person’s care; and establishing integration between services and creating a jointly-funded budget. Recommendations for policy and practice 23. A number of recommendations can be made regarding a possible roll-out of personal health budgets within the area of substance misuse from the results of this study: Personal health budgets increased service satisfaction, facilitated a positive relationship with health professionals and improved quality of life supporting a wider roll-out. The budget-holders we interviewed emphasised the value of information and guidance from operational representatives about the size and operation of their budgets, including what services were covered. Direct payments were viewed as playing a critical role in the success of personal health budgets for people with substance misuse problems. However, managing the anxiety and practical challenges around offering this deployment option may need consideration