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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 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 National Cancer Survivorship Initiative National Cancer Survivorship Initiative What have we achieved in 3 years ? 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 National Cancer Survivorship Initiative Involvement of 10 centres/27 projects Providing evidence/cost benefit Lost Patient centred care Assessment • Risk strategies • Psychological • CLIC Sargent Key worker/ Nurse competencies Information transfer Flexible Patient pathways National Cancer Survivorship Initiative • Care plan (treatment summary) • Education • Web based platform 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 National Cancer Survivorship Initiative 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 National Cancer Survivorship Initiative National Cancer Survivorship Initiative 4 prototype centres, York health economics Testing patient pathways Economic evaluation 10 working principles of care •Models Risk strategies •Nurse Psychological led • CLIC Sargent Shared care National measures Reduction OPD TS/CP for all Flexible interactive Patient pathways National Cancer Survivorship Initiative Supported self management Principal treatment centre Test site Treatment summary in case notes Care plan - given Bristol 91% 100% GOSH (May 2011 – Nov 2012 100% 100% Leeds (Nov 2011 – January 2012) 100% 90% National Cancer Survivorship Initiative Leeds Teaching Hospitals - LTFU Shift of Mangement from Mixed to Adult, Paed & Nurse Led clinics 1400 1200 LTFU mixed N/L mixed TEL mixed LTFU paed N/L paed TEL paed LTFU Adult N/L Adult TEL Adult 1000 800 600 400 200 0 LTFU mixed 2004/2005 2005/2006 2006/2007 2007/2008 2008/2009 1176 880 447 482 521 71 108 N/L mixed TEL mixed 49 2009/2010 2010/2011 154 LTFU paed 231 190 N/L paed 15 24 15 TEL paed LTFU Adult 229 294 N/L Adult 107 109 TEL Adult National Cancer Survivorship Initiative 176 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 National Cancer Survivorship Initiative There is still away to go but it will be worth it... Members of hospital teams in: • Cambridge • Birmingham • Bristol Many 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 National Cancer Survivorship Initiative Alex…… The fundamental benefit that the new pathways will provide for survivors of childhood cancer is the provision of better information: ependence 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. National Cancer Survivorship Initiative National Cancer Survivorship Initiative Ten working principles 1. All cancer survivors, wherever they live can and should expect to have informed choices in relation to the services through an established aftercare MDT. 2. All aftercare services are based on consistent, defined patient pathways 3. All aftercare is based on safe risk stratified levels of care endorsed by clinicians 4. All cancer survivors should have access to the appropriate models of aftercare which is ‘right for them’ and in line NICE 5. 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 National Cancer Survivorship Initiative Ten working principles cont… 6. All cancer survivors should have access to a care co-ordinator function to streamline their care. 7. All cancer survivors should have pre-planned and pro-active transition arrangements at all stages of their aftercare 8. 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 9. All cancer survivors “experience feedback” should be routinely monitored and directly influence commissioning decision-making 10. 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) National Cancer Survivorship Initiative National Cancer Survivorship Initiative