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National Cancer Survivorship Initiative

Children & Young People

Summary of Projects

The Children and Young People Cancer Survivorship work is focused on testing models of care to identify principles and ‘prototype’ models for further testing.

The overall objective is to improve the provision of care and support for children and young people surviving cancer; and to importantly improve the overall support to parents and carers.  To achieve this objective we are testing models of care in relation to clinical and non clinical services and support based on the following priorities:

  • The development of Survivorship Treatment Plans (individual to the needs of each child or young person)
  • The development of survivor pathways with a particular focus on key stages of the care pathway, namely transition
  • Appropriate follow-up models – including shared care and nurse led follow-up
  • Identifying those patients at low, medium and high risk as a consequence of late effects following surgery, chemotherapy and radiotherapy
  • Continuing support throughout care in terms of education needs
  • Dealing with non-clinical issues to ensure a ‘normality’ of life following a cancer diagnosis and treatment

There are 10 NCSI Children and Young People Test Sites involved in this project, 9 of which are clinical.  2 of these, plus 4 additional sites, form part of the Assessment and Care Planning Test Communities.

Emerging principles

The following principles are being identified as key to successful implementation of high quality care pathways:

  • Personal, stratified care
  • A shift to informed self management
  • Easy access to universal and, where necessary, specialised services  appropriate to their needs
  • Realistic / evidence-based /cost effective “models of care”

Crosscutting Themes

In order to achieve these goals, the following issues need to be addressed:

  • Stratification methodology
  • Nurse Competencies
  • Evaluation exercise
  • Evidence Review
  • Pan Thames – model of care work
  • Patients lost to follow up
  • Sharing of learning and progress

Further information on crosscutting themes is available to download below.

The Projects’ global measures

The success of this work will be determined by the ability to achieve the following results:

  • 100% care plan for all CYP cancer survivors
  • Reduction in inappropriate follow-up appointments
  • Reduction in unnecessary emergency admission
  • Reduction in unnecessary in-patient admissions

The projects are supported by the Clinical Reference Group, CYP Steering Group, including a core group of patient representatives, and the Service Improvement Advisory Network.

The Children and Young People projects sponsor is Faith Gibson, Clinical Professor of Children and Young People’s Cancer Care, Great Ormond Street Hospital and London South Bank University, and the project manager is Patricia Morris from NHS Improvement.

Last updated on March 26, 2013

Information Resources