Achievements from Children and Young People Work Stream
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Transcript of Achievements from Children and Young People Work Stream
National Cancer Survivorship InitiativeNational Cancer Survivorship Initiative
Achievements from Children and Young People Work Stream
Gill LevittNational Clinical Lead
On behalf of all CYP test sites and supporting cast
National Cancer Survivorship Initiative
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
What have we achieved in 3 years ?
National Cancer Survivorship Initiative
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 projectsProviding evidence/cost benefit
Patient centred careLost
Flexible Patient pathways
Key worker/Nurse competencies
• Care plan (treatment summary)• Education• Web based platform
Information transfer
• Risk strategies• Psychological• CLIC Sargent
Assessment
National Cancer Survivorship Initiative
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 transitionParticipate in educational
programmes Facilitate the development of
evidence based practice
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Development of interactive CYP patient pathways
Three pathways developed:
Paediatric all 3 levels of care
Primary treatment centre/shared care hospitalTeenage 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 economicsTesting patient pathways
Economic evaluation
Flexible interactive Patient pathways
National measuresReduction OPDTS/CP for all
10 working principles10 working principles• Risk strategies• Psychological• CLIC Sargent
Models of care
Nurse led
Shared care
Supported self management
Principal treatment centre
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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%
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Leeds Teaching Hospitals - LTFU Shift of Mangement from Mixed to Adult, Paed & Nurse Led clinics
0
200
400
600
800
1000
1200
1400
LTFU mixed
N/L mixed
TEL mixed
LTFU paed
N/L paed
TEL paed
LTFU Adult
N/L Adult
TEL Adult
LTFU mixed 1176 880 447 482 521
N/L mixed 71 108
TEL mixed 49 154
LTFU paed 231 190
N/L paed 15 24
TEL paed 15
LTFU Adult 229 294
N/L Adult 107 109
TEL Adult 176
2004/2005 2005/2006 2006/2007 2007/2008 2008/2009 2009/2010 2010/2011
National Cancer Survivorship Initiative
Implementation and spread
Six national workshopsFive 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 reformWorking 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 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
National Cancer Survivorship Initiative
ependence
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.
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
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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