Eve Hutton, Reader in Children & Young People's Health and wellbeing. Greater Choice and control? Parent/carer views on personal health budgets for children who use rehabilitation therapy services Eve Hutton, Reader in Children & Young People's Health and wellbeing. Eve.hutton@Canterbury.ac.uk

Background Research Approach Findings Summary/Conclusion

Background to PHBs The ‘person centred’ alternative to generically provided services. Provide flexibility to purchase elements of personalised care. Available to those with EHC plan since 2014.

Context Limited access to specialist services and reduction in numbers of NHS therapists (Chartered Society of Physiotherapy 2011, Royal College of Speech & Language Therapy 2014). Increased wait times, raised thresholds, difficulty obtaining equipment (BACD & BACCH 2014) Reduced access to specialist provision e.g. hydrotherapy (Muscular Dystrophy UK)

Only 5% of eligible families have chosen a personal budget ( Department of Education 2017). ‘Hearts and minds’ campaign to increase awareness and uptake ( NHS Learning Network )

Research Approach 18 years or younger/access two therapies ( PT,OT, SALT) Parents recruited via NHS therapy teams and local parent groups 21 returned expression of interest 15 accepted an invitation focus group/interview 9 interviewed - including parents/foster carers

Focus group/guide Getting the help you need when you need it Managing transitions Personalised care Focus groups 1 hour / telephone interviews 30-45 mins Parent carer responses Hutton et al 2016

Personal health budgets No direct experience of PHB / lack of information about eligibility or entitlement. “I don’t know if it is only very profoundly disabled children who are entitled …or quite how that works, no one has suggested that I would be entitled”

Potential benefits Purchase ‘additional’ specialist services ‘. Purchase services not currently available on the NHS -non traditional, alternative or complementary. Circumvent waiting times/delays and bottlenecks in the current system. “ ..it would allow me to pay for some of the private services that I’m already buying”

Equipment Facilitate quicker access to services equipment. Avoid constant cycle of applications, lengthy wait times and delays. “ you would hope that you could get those bits quicker.. When it comes to equipment then it could be faster”

Drawbacks Not wanting to ‘lose out’ on existing provision. Would a PHB buy fewer services? “ I’d want to know on a quantified basis what's the value of the service that I am receiving. My first question would be does my pot of cash allow me to have the same service I have now ?.”

Managing the budget Not wanting the additional responsibility of managing a budget. “..you know I am busy enough already” Not knowing how to use a PHB. “You could be sitting with a large pot of cash without really knowing what it is that your child is supposed to need”

Conclusion Consideration of PHB informed by individual experience of current provision and system. Divergent perspectives and experiences of parents. Perceived benefits (additional services/shorter wait times) weighed against drawbacks ( responsibility/ uncertainty )

Current ‘imperfect’ system provides certainty, reliability and comprehensive service provision. Concern that moves to personalised health care may lead to uneven provision, reduction in certain services.

Summary Original ‘vision’ of PHB potential to transform services & respond to parental preferences and choice. Greater clarity about entitlement and information for parents /carers. Eligibility criteria is likely to be tested – the promise of PHB ( greater choice and control ) may not meet expectations.

Limitations Small number of participants Parents carers interested and gave time enthusiastically Provides a welcome ‘ground level’ view Indicator of how PHB may be received and challenges associated with meeting parental expectations.

Greater choice and control – parent/carers view of personal health budgets for disabled children who use rehabilitation therapy services. Hutton, E., and King, A. ( 2017) Parent/carer views on personal health budgets for disabled children who use rehabilitation therapy services. Disability & Society

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