Using the

Ready Steady Go Programme

Amanda Harris & Judi MaddisonPaediatric Respiratory Nurse Specialists

Southampton Childrens Hospital

Transition• “a purposeful, planned process for adolescents with

chronic physical & medical conditions as they move from child-centred to adult orientated health care.

• A process that addresses their– Medical needs– Psychosocial needs– Educational/vocational needs

Transfer is a single event

Blum et al 1993

Good Transition• Improved follow-up• Improved patient & parent satisfaction• Improved disease control & disease knowledge• Improved documentation of adolescent issues• Improved health related quality of life• Vocational readiness

White et al 2004, McDonagh et al 2007, Harden et al 2012

What do young people want?

• Start transition early• Individualised approach• Honest explanation of adolescent condition and

associated health care• Continuity in health personnel• Opportunity to see health professional without parents• Able to express opinions and be involved in decisions• Address medical, psychosocial, educational/vocational

needs

Ready Steady Go

Ready Steady Go: The beginning

• Literature search• Discussed with other sub-specialities• Experience from other hospitals - UK , Canada,

Australia• Transition Steering Group

– cardiac, nephrology, respiratory, cystic fibrosis, community, diabetes, rheumatology, gastroentrology, haematology, oncology, learning disabilities, social workers, adult specialities.

Ready Steady Go: Literature • 1998 Bridging the Gap. Vancouver• 2003 NSF Stds, Bridging the Gap, Good transition• 2004 NSF – Core Std 4, RCN Transition Guidelines, Every Child matters• 2005 You’re welcome (DoH) Transitions: Young Adults with Complex Needs• 2006 Transition Getting it Right, Youth Matters:Next steps• 2007 Growing Up Matters, Transition Guide, You’re Welcome (DoH)• 2008 Moving on Well, Tackling the Health of the Teenage Nation

Ready Steady Go: What?

A holistic programme to empower patients and carers by:

Equipping them with the skills and knowledge to manage their condition

A gradual process NOT a single event

Transfer is a single event

www.uhs.nhs.uk/readysteadygo

• You, if you are 11+ years old with a long-term condition

• You, if your child is 11+ years old – Parent/carer plan

• Start early because– More time to gain

the knowledge, skills and confidence

– Better knowledge retention

– Not rushed- go at the patient/carer pace!

Ready Steady Go: Who?

Ready Steady Go: Why?

• Improves long term outcomes

Outcomes for young people within 2 years of transfer to adult services

No transition Using a Transition programme e.g Ready Steady Go

Comments

Kidney transplant patients:

% who lost their transplant or died

25% 0% Prestidge et al 2012

Diabetes patients:

% of YP attending clinic in adult services

57% 78%only had time to complete ‘Go’ as patients olderSCH unpublished

Diabetes patients:

Mean number of emergency admissions

1.01 0.45 50% reduction

only had time to complete ‘Go’ as patients olderSCH unpublished

Ready Steady Go: What’s involved?

Ready Steady Go: Transition Programme

• Knowledge

• Self advocacy

• Health + lifestyle

• Education/future

• Psychosocial issues

• Transition

Ready Steady Go: Transition Plan

Ready Steady Go: Moving through the programme

11-12 yrs YP and carer Introduced to Ready Steady Go programme

11 – 12 yrsYP completes Getting ReadyIssues addressed in bite sized pieces. Agree goals

14 – 16 yrsYP completes Steady for progress.Issues addressedIn bite sized pieces. Agree goals

16 – 18 yrsYP completes Go. Ideally all issues addressed prior to transfer.On-going issues highlighted to adult services.

1st adult clinic YP +/- carer completes HelloIssues addressed. by HCP. Periodically completed again to ensure skills maintained and any issues addressed. Agree goals

Carer completes parent/carer questionnaire alongside YP questionnaires. Any Issues addressed. Agree goals

YP with learning difficulties completes as much as possible alongside carer who is YP advocate

Ready Steady Go: Each Young person (YP) progresses at their own pace

Ready Steady Go: The Programme

• Ready Steady Go (RSG) documentation• Information campaign• Young persons clinic weeks 4 x year

– Promotes transition• MDT, patients and parents

– Share resources– Young person friendly environment

Ready Steady Go: Snapshot Feedback Questions ResponsesThe “Transition: moving into adult care ” helped patients + family understand why they are starting RSG

93/93 agree

The questionnaires were easy to understand 93/93 strongly agree/agree

RSG questionnaires helped focus clinic appt + address difficult issues

90/93 agree

RSG helps ease the process of transition 93/93 strongly agree/agree

RSG improved my practice 21/22

Any questions that would help improve transition?

Comments?

All – No

Time issuesRelevance of some questions especially in patients with learning disabilities

Challenges

• Encouraging all specialities to get involved• Time• Administration process• Implementing change • Identifying adult services in some areas• Financial – minimal amount required

Ready Steady Go: Adoption + Support• NHSE, National Youth Forum • BAPN + IPNA• Sub-speciality groups

– Diabetes, Cystic Fibrosis, Epilepsy, Renal, SEND, PCD, Mental Health, Haemophilia, Oncology, GP……

• Numerous hospitals across the UK• Adult engagement with Hello to Adult Services• Public Health England- example of good practice• International interest

Ready Steady Go: Next steps

• Transition website + App– Generic + sub-speciality links

• Implementing ‘Hello to Adult Services’ • ‘Hello to Children’s Services’ for carers• Adaption for special needs• Large scale study on long-term outcomes of

Ready Steady Go

• Video

Ready Steady Go: Self advocacy

• Speaking up for yourself

• Shared decision making

‘No decision about me without me’

Case Study 1• 17yr old boy. • Supportive family, parents GPs • Confident boy participating in clinic appts• RSG commenced just before transfer to adults• Infertility issues highlighted by using programme

Case Study 2

• 16yr old boy with CF and LD (cannot read)• Family not coping. Not adhering to treatment• School avoidance and health issues. • Commenced RSG. Nurse led + psychology• Enrolled in college (painting and decorating)• Adhering to treatment and ready to go to adults in

18mths. • Improved health

Case Study 3• 14 yr old girl – respiratory condition• Good adherence with treatment• Using RSG highlighted reading ability• Mum covering the problem• Revised educational approach• Attending college - vocational course• Transitioned to GP – RSG info sent

Case Study 4• 13 yr old girl. Not adherent to treatment • RSG introduced. Mum angry as unable to engage her daughter in treatment• Bullying identified• Specialist team worked with child, family and school• Improvement in adherence, child’s mood and family relationships

Case Study 5• 14 yr old boy with protective parents• Subject of transition raised & RSG document shown• Father angry, felt inappropriate age to discuss such

matters• Family refused to allow RSG to commence and

continue to do so.• At 16 requested immediate transfer to adults and

RSG to be undertaken!

Case Study 6• 15 yr old girl in shared care clinic• Lack of boundaries in childhood• Poor adherence to treatment – health decline• Parents view “her care is her responsibility”• Need for a structured approach• Commenced RSG programme, giving parents and

child clear direction & targets.• Transitioned to adults with ongoing support

Case study 7• 15 yr old boy with respiratory condition. New regional clinic –

seen 6 monthly.• Non adherent to treatment. Reduced lung function. Increase

in lower respiratory infections.• Home schooled therefore unable to treat in school• Commenced RSG. Psychology support requested for next visit.• Next visit: much improved compliance, improvement in lung

function, no respiratory infections in 6 months, all prescriptions collected. When asked what had changed he said

‘I hadn’t realised the point. When we went through it all it just made sense for me to grow up a bit and start doing it.’

Parents during Transition

Where do they fit in?

Why do parents worry about transition?

• Realisation that child is growing up• Cultural beliefs• Loss of control – of child and/or condition• Fear of the future

Respecting parents wishes vs the rights of the child

• Balancing this can be difficult.• Awareness of the child’s level of understanding

and their right to information.• Discussion with parents• Continuing to work together with the whole

family.

Permission denied to some aspects of the programme.

• Parents have the right to refuse in the under 16s.

• Important to establish what they have agreed with school.

• Important to document parents wishes.• Can’t remove the sections from the form.• What if the child asks directly?

Permission denied to the whole programme

• Quite an unusual event.• Document it and parents sign!• Doesn’t mean you can’t do anything.• Review this and update when possible.

If we knew then…. the reality of introducing the programme

If we knew then…..

• Start small and build slowly• Start with those who are keen• Training and staff awareness• Get admin staff involved• Build on your success – monitor problems• Track your progress

Ready Steady Go delivers on:

• 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)

Ready Steady Go: Summary

• A generic programme that works across sub-specialities

• Shifting emphasis to empowering the young person

• 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

Ready Steady Go and HelloFurther Information can be found at:

1. Website: www.uhs.nhs.uk/readysteadygo

2. Article: Implementing transition: Ready Steady Go.

Arch Dis Child Educ Pract Ed June 2015

Ready Steady Go Any questions?