Achievements from Children and Young People Work Stream

1. National Cancer Survivorship Initiative Achievements from Children and Young People Work Stream Gill Levitt National Clinical Lead On behalf of all CYP test sites and supporting cast

2. Aims: To reduce the impact of the consequences of cancer treatment on the health and wellbeing of childhood cancer survivors • Care not universal throughout England 19 children’s PTC BUT multiple 30+ cancer networks • Hospital follow-up is increasingly unaffordable and may not be appropriate for the majority • New Models of care need developing taking into account Views of Survivors and parents Variability and complexity of patient needs Financial restraints • Comply with national measures

3. What have we achieved in 3 years ?

4. Multidisciplinary team of advisors • Clinical advisors drawn from experienced physicians (oncologists, endocrinologist, GP), nurses and an epidemiologist. • Co-chair medical oncologist/professor of nursing • Survivors • Third sector-CLIC Sargent, Teenage Cancer Trust • NHS improvement team

5. Key worker/ Nurse competencies Flexible Patient pathways Involvement of 10 centres/27 projectsProviding evidence/cost benefitPatient centred care Lost Assessment • Risk strategies • Psychological • CLIC Sargent • Care plan (treatment summary) • Education • Web based platform Information transfer

6. Beyond treatment: emerging nursing roles for the care of children and young adults after cancer - a competence framework • Assess, plan, implement, review and document individualised care plans • Support self-care and monitoring • Create services that can work/link with General Practice services • Ensure smooth transition • Participate in educational programmes • Facilitate the development of evidence based practice

7. Development of interactive CYP patient pathways Three pathways developed: • Paediatric all 3 levels of care Primary treatment centre/shared care hospital • Teenage and young adult level1/2 Primary care physicians/shared care hospital with easy access to support from PTC • Teenage and young adult level 3 complex care Shared care with PTC/primary care physicians

9. National measures • Reduction OPD • TS/CP for all Economic evaluation Flexible interactive Patient pathways 4 prototype centres, York health economicsTesting patient pathways • Models of care • Nurse led • Shared care • Supported self management • Principal treatment centre • Risk strategies • Psychological • CLIC Sargent 10 working principles

12. Implementation and spread • Six national workshops • Five publications including, evidence review of models of care, designing and implementation of pathways, poster presentations etc • Interactive web based pathways backed by evidence modules • Invited speakers at national and international meetings • Engagement pack to help implementation of reform • Working within the CCLG to assist implementation

13. There is still away to go but it will be worth it... Members of hospital teams in: • Cambridge • Birmingham Many • Bristol helping hands • Brighton • Christie Hospital, Manchester • Great Ormond St London • Leeds/Yorkshire • Royal Marsden London • Sheffield • CLIC Sargent • Teenage Cancer Trust • Survivors • Members of advisory group • York academic units • Birmingham academic units

14. Alex…… The fundamental benefit that the new pathways will provide for survivors of childhood cancer is the provision of better information: about what has happened to us and what will happen to us, about how our illnesses may affect other aspects of our lives and about how we can look after ourselves. This knowledge is empowering. We will become active participants in a system that recognises us as people, not just as patients. ependence

16. Ten working principles • All cancer survivors, wherever they live can and should expect to have informed choices in relation to the services through an established aftercare MDT. • All aftercare services are based on consistent, defined patient pathways • All aftercare is based on safe risk stratified levels of care endorsed by clinicians • All cancer survivors should have access to the appropriate models of aftercare which is ‘right for them’ and in line NICE • All cancer survivors can expect to be given a Treatment Summary and Care Plan at the end of their treatment and at all stages of transition

17. Ten working principles cont… • All cancer survivors should have access to a care co-ordinator function to streamline their care. • All cancer survivors should have pre-planned and pro-active transition arrangements at all stages of their aftercare • All cancer survivors, who are clinically safe to self-manage, will be provided with comprehensive information and be involved in a remote monitoring and / or alert systems which prompts screening investigations • All cancer survivors “experience feedback” should be routinely monitored and directly influence commissioning decision-making • There will be a minimum 20% reduction in volume nationally in hospital based Out-Patient appointments (those patients already routinely receiving Out-Patient follow-up aftercare)