Greater choice and control? Parent carer views on personal health budgets for disabled children who use rehabilitation therapy services

Aim

Personalised budgets have been suggested as the person-centered alternative to generically provided services, where families can exercise greater ‘choice and control’ and decide which services to buy for their disabled child and how to arrange care, taking individual circumstances, preferences and needs into account (NHS England, Patient Participation Team 2014). This poster examines the responses of parents interviewed about the prospect of using a personalised health budget for their children in relation to rehabilitation therapy at a time of significant cut backs in child health services (British Academy of Childhood Disability & British Association for Community Child Health 2014).

Method

We recruited nine parents and primary carers of children with physical disabilities (aged 18 years or younger) from one region in England who accessed at least two rehabilitation therapy services (physiotherapy, occupational therapy, and speech and language therapy). A focus group / interview guide was developed to explore themes that included parent/carer views on the proposed introduction of personalised budgets and how this might affect care. All focus groups and one-to-one interviews were recorded and transcribed verbatim. The focus group and face-to-face interviews lasted for around 1 hour, telephone interviews were typically shorter (30-45 minutes). Interview data was entered into NVIVO and analysed using ‘framework analysis’ (Pope and Mays 2006).

Results

Parents/carers viewed the prospect of greater ‘choice and control’ with caution and perceived benefits were tempered by both positive and negative experiences of current provision, alongside concerns about how a personal budget would work in practice. Questions about entitlement and what can and cannot be purchased using a personal budget remain grey areas. Exemptions and limits on what can be included may mean that personal health budgets do not deliver on their promise of greater ‘choice and control for parents/carers. Implications for rehabilitation therapy services are explored.