SCIE Report 40: Keeping personal budgets personal: learning from the experiences of older people, people with mental health problems and their carers
How people heard about personal budgets
The majority of personal budget holders and carers in the study had heard about personal budgets from their social worker or community psychiatric nurse. A few people had been told about personal budgets by hospital staff, before being discharged, and one person had been pointed to a personal budget by her employment officer. Others, mainly older people, had learned about them through friends who already had a personal budget or knew someone who had. Several personal budget holders had heard about them for the first time at a point of crisis or when they were discharged from hospital to a homecare reablement service. However, they would have liked to access that information earlier.
Both personal budget holders and carers felt very strongly that personal budgets and the support for them should be more actively and consistently 'marketed' by local authorities and mental health trusts, so that more people could benefit from them at an early stage in their involvement with social services. Although they recognised that personal budgets were still quite new in many areas, personal budget holders emphasised the need for more general awareness of personal budgets and the processes involved.
They highlighted the importance of:
- key groups of social care and health staff (notably GPs, community nurses and hospital staff) knowing about personal budgets and being able actively to point users and carers to where they could get more information
- care agencies and voluntary sector providers being informed about personal budgets so that this information could be passed on and people guided to sources of help and information
- facilitating meetings with peers where people can informally pick up insights about accessing and managing personal budgets
- using the local media (e.g. local papers, radio, LA newsletters) to publicise personal budgets as one way to ensure that people are aware of them directly or via family and friends, before they come into contact with social care services.
Unfortunately, relatively few of the personal budget holders and carers who contributed to the research were from the black and minority ethnic (BME) community and/or lesbian, gay, bisexual and transgender (LGBT) communities. From this study it is therefore difficult to know whether people from these communities are less likely to hear about personal budgets but there is certainly existing evidence that they can experience discrimination in social care services and as a result may be more reluctant to engage with them (07, 08).
A few examples of positive outreach with marginalised communities were found, including:
- a user-led organisation which was facilitating peer support between existing personal budget holders with LGBT identities and potential personal budget holders from the same communities
- a user-led organisation targeting young people, and people with mental health problems and other needs such as substance misuse and/or HIV.
Overall, there does appear to be a need for more active outreach with marginalised communities, which works through trusted networks and groups. Such initiatives need to explain how personal budgets work and the scope they provide for setting up support which is in tune with people's relationships and cultural needs.
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- SCIE Report 40: Keeping personal budgets personal: learning from the experiences of older people, people with mental health problems and their carers