Designing bespoke personal budgets for adults with HIV/Aids

Suffolk council had for many years used its HIV/Aids grant funding to give residents with a diagnosis who meet eligibility criteria a lump sum to go towards respite of their choice. Originally this was to fund residential respite for people who were terminally ill. The money could be applied for from 1 April each financial year and a grant of £300 was awarded on a first-come-first-served basis. Those in the know were very quick to apply and the money was allocated very quickly. The total available was £12,000.

As HIV/Aids is now more commonly viewed as a long-term condition rather than a terminal illness we wanted to develop a process whereby people could access small pots of money to spend on any service or provision that improved agreed well-being outcomes. Due to issues of confidentiality most people preferred not to come through mainstream social care assessment processes and were thereby denied access to one-off or simple direct payments, even when eligible under Fair Access to Care Services (FACS). The standard personal budget summary was also weighted to people with other sorts of needs and was not considered appropriate to fully capture the sorts of well-being issues, social isolation or stigma faced by people with HIV Aids.
 
In response, we sought to:

• Design a personal budget system to facilitate a fairer distribution of money;
• Widen the uptake of support;
• Design an explanatory leaflet which also contained the FACS criteria.

Designing the personal budgets questionnaire

Service users were consulted at forums about the possible content of an assessment questionnaire. From this, four main areas of concern were identified: social situation, key relationships, physical well-being and emotional well-being.

Four related questions were developed for each topic, which were scored from 0 – 3. There was also space on each page to allow for further comments, to be taken into consideration for fine-tuning the scoring; for example, if someone was clearly borderline between a 2 and a 3, the comments would clarify where they should sit.

The topics were weighted in order of importance and given an overall percentage value. The answers were fed into an excel spreadsheet which, preloaded with the maximum amount of money available for each individual and the percentage weighting for each question, calculated the amount of money to be awarded.

An assumption was made about the number of people who might apply and the funding available was worked out on this basis. A trial was undertaken with 10 people and the results from that used to fine-tune the weighting.

The appointed social worker assisted 40 service users to complete a well-being grant questionnaire in 2012-2013.  This happened in either their own home or in Terrence Higgins Trust offices, and varying amounts of funding were given to them according to their need. The average amount received was £212. 

Prejudice and social isolation

The questionnaire teases out and explores the sorts of issues people living with HIV experience, for example, psychological issues and social isolation due to prejudice.  Most people tended to score highly for being socially isolated as they wanted to hide their health status from others and therefore withdraw from social situations. 

Physical well-being also triggered high scores due to the impact of the side-effects from the antiretroviral drugs. Emotional issues were also very prevalent during the assessments with service users finding it very difficult to come to terms with their diagnosis and expressing profound anxiety about what their future held.

A wide range of social groups were reached in that 10 service users were black female, five were black male, six were white female and 16 white male. Twenty six of the service users were of straight sexual orientation and 11 were gay or lesbian.

One service user spent his personal budget on servicing a mobility scooter, which allowed him to get out of his home again and feel more connected to his community. This had a positive impact on his physical and mental well-being. An annual gym membership helped another service user to get fit, lose weight and reconnect with her community. Another service user hopes to spend the personal budget on setting up a community-based singing group so that she can stop feeling so isolated and because singing improves her mental wellbeing.     

Helen Cutting is senior specialist social worker and Annabel Brown is independent consultant at Suffolk Council.

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