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


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


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


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


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


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


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%


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


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


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


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.


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


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)

achievements from children and young people work stream

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