WP3 Progress to date and critiquing the questionnaires

1. WP3 Progress to dateand critiquing the questionnaires

2. WP 3 Progress (1) • 4 Focus Groups completed • Naïve: people with stroke and carers • Experienced: people with stroke and carers • Carers • Health Care Professionals • Telephone interviews • 4 budget holders • 2 commissioners

3. WP 3 Progress (2) • Additional data sources: • ACPIN meeting on Commissioning • Workshop with physiotherapists at National ACPIN conference • Review of Policy Documents • Raising awareness: • Poster dissemination at the World Congress for Neurorehabilitation • Workshop with physiotherapists at National ACPIN conference • Meeting with Local Different Strokes Group

4. Focus Group findings:Patients and Carers – Service / system level failure • Frustration at lack of NHS provision • Transition between hospital and home • Recognition of the burden on carers (emotional and practical) • Prepared to purchase if they know it will work (try before you buy / lease purchase schemes) • Lack of information about rehabilitation • Perceived lack of engagement with technology from healthcare professionals • Fighting the system

5. Focus Group findings:Patients and Carers – Devices • Desire for something which they can wear during daily life • Easy to put on / off, many current devices difficult • Prepared to purchase if they know it will work (try before you buy / lease purchase schemes) • Motivation to optimise recovery • Hope in technology – informed by knowledge of recovery and importance of practice • Belief in technology - because it’s designed for purpose • Issues around generalisability – one-size doesn’t fit all – awareness of others needs

6. Focus group findings:Healthcare Professionals • Device practicalities – focus on use in hospital for both in & out-patients • Cost – initial and running • On/off and set-up time • Storage • Maintenance and cleaning • Knowledge, information and choice (NHS vs private approaches) • Not wanting to raise expectations of recovery and provision • Frustration at the system • Lack of evidence • Future role envisaged

7. Interview findings:Budget Holders and Commissioners – System failure • Commissioners are there to buy service, but stroke upper limb is unacknowledged problem • Therapists are not selling device based services to commissioners • Lack of evidence of benefit • Don’t know the system • Don’t think they would be able to make good enough case for devices • Effort • No perceived clear route to market c.f. drugs • Devices are the remit of therapists. They have no budget.

9. Questionnaire progress • Ethics – Substantial amendment to NHS submitted • Questionnaire review ongoing • Questionnaire distribution on ethics approval • Present findings of FGs and raise awareness of questionnaire at UK Stroke Forum (Dec) Workshop Thursday 2 December, 0800-0850 • How do we improve method of accessing commissioners of services?

10. Critique of draft questionnaires – divide into 3 groups • Patients and carers (Ann-Marie) • Patient, Stroke patient rep • HCP (Jane) • Practicing clinicians / researchers • Budget holders and commissioners (Sara) • People responsible for managing or commissioning services If you have 2 hats please join the smaller group

11. Providing feedback on draft questionnaires • Each individual to read and complete the questionnaire (30 mins) • Identify any questions that were ambiguous or unclear • Irrelevant – we would like to reduce the length by ~20% • Where we have duplicate questions identify preferred form • Additional questions that should be included • Mark-up your individual copy of the questionnaire with your comments • Collate main comments within your group on a flip chart (5 mins) • Present group feedback to the meeting (12 mins)