ReadySteadyGo andhello Patient empowerment Shared decision making Transition

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ReadySteadyGo andhello Patient empowerment Shared decision making Transition Dr Arvind Nagra Consultant Paediatric Nephrologist, Clinical Lead for Transitional Care

ReadySteadyGo: What? Generic empowerment programme Equips users with the skills and knowledge to manage their healthcare Why? Reduce morbidity and mortality Improves vocational readiness Who? Young people >11yrs with chronic condition How? Ready Steady Go programme www.uhs.nhs.uk/readysteadygo

ReadySteadyGo: Improves Outcomes Outcomes for young No transition people within 2 years Improves long term of transfer to adult services outcomes Kidney transplant patients: % who lost their transplant or died within 2 years of transfer to adults Using a Transition programme e.g. Ready Steady Go 25% 0% Comments Diabetes patients: % of YP attending clinicin adult services 57% 78% only had time to complete Go as patients older Diabetes patients: Number of emergency admissions 1.01 0.45 50% reduction only had time to complete Go as patients older

ReadySteadyGo: How? Provides a structured framework covering: Knowledge Self advocacy- speaking up for yourself Health + lifestyle Education/future Psychosocial issues Transition Paone et al 1998, J McDonagh et al 2006

ReadySteadyGo: Self advocacy Speaking up for yourself Shared decision making No decision about me without me

Video www.uhs.nhs.uk/readysteadygo 6 minutes

Ready Steady Go: Moving through the programme Ready Steady Go: Each Young person (YP) progresses at their own pace 11-12 yrs.. YP and Carer Introduced to Ready Steady Go programme with information leaflet + video www.uhs.nhs.uk/ readysteadygo 11 13 yrs. YP completes Ready Issues addressed in bite sized pieces. YP Introduced to shared decision making + confidentiality When ready YP seen on own for few mins during clinic. Agree goals 14 16 yrs. YP completes Steady Issues addressed In bite sized pieces Aim to see YP for longer on own in clinic. Keep parent/carer fully involved Duplicate clinic letters offered to YP Agree goals 16 18 yrs. YP completes Go. Issues addressed In bite sized pieces Work towards YP conducting whole clinic on own. Keep parents/carers involved Referral letter to adult team. YP meets adult team. On-going issues highlighted to adult team. Ideally all issues addressed prior to transfer. Write transfer letter Agree goals. 1st adult clinic YP +/- Carer completes Hello Issues addressed in bite size pieces by HCP. Clinic letters sent to YP Periodically Hello completed again to ensure knowledge + skills maintained Any issues addressed. Agree goals Carer completes parent/carer questionnaire alongside YP questionnaires. Any Issues addressed. YP with learning difficulties completes as much as possible alongside carer who is YP advocate Nagra et al 2015

ReadySteadyGodelivers: CQC report: From pond into the sea (2014) Institute of Public Policy Research: Patients in control (2014) Best practice statement for transition -TYAC, Mental Health, Renal.. Health Foundation: Ideas into action: Patient centred care (2014) NHS England generic transition service specification (draft)

ReadySteadyGo: Adoption + Support NHSE, National Youth Forum BAPN + IPNA Sub-speciality groups Diabetes, Cystic fibrosis, Epilepsy, renal, SEND, mental health, haemophilia, oncology Numerous hospitals in UK Adult engagement with Hello to Adult Services Public Health England- example of good practice International interest

ReadySteadyGo: Next steps Easy Read version Co-produced with -Available by end November 2015 Hello to children s services for parents -Available by end 2015 My Health Record- patient owned record Includes online/app ReadySteady Go

ReadySteadyGo +Hello: Summary A generic programme that works across subspecialities and age groups Shifts emphasis to empowering the young person and adult patient RSG succeeds because: The staged traffic light system is appealing, it s simple to use, easy to implement and has minimal cost RSG-Hello continuity from paediatrics to adults

ReadySteadyGo andhello Further Information can be found at: 1. Website: www.uhs.nhs.uk/readysteadygo 2. Article: Implementing transition: ReadySteadyGo. Arch Dis Child EducPractEd June 2015 ;