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National Cancer Survivorship Initiative

Welcome to the NCSI Website

There are currently 1.8 million people in England living with and beyond cancer, and 2 million across the UK as a whole. The aim of the National Cancer Survivorship Initiative is to ensure that those living with and beyond cancer get the care and support they need to lead as healthy and active a life as possible, for as long as possible.

In the news:

New Living With and Beyond Cancer Programme

August 5th, 2014

Following on from the success of The National Cancer Survivorship Initiative (NCSI), we are pleased to announce the start of a new Living With and Beyond Cancer Programme. This programme is a two year partnership between NHS England and Macmillan Cancer Support and will develop and implement a transitional plan for the National Cancer Survivorship Initiative, aimed at embedding findings and recommendations into mainstream NHS commissioning and service provision.

We are now in the process of defining the detailed Programme Plan which will focus on:

  • Ensuring all cancer patients have access to holistic needs assessment, treatment summary, cancer care review and a patient education and support event – the ‘Recovery Package’;
  • Developing and commissioning risk stratified pathways of post treatment management;
  • Promoting physical activity;
  • Understanding and commissioning for improved management of the consequences of treatment.

Alongside this work, Macmillan Cancer Support and NHS England are considering the focus for a further programme of more developmental activity aimed at generating new recommendations to improve the care and support of cancer patients.

We will keep you informed of progress and of opportunities to be involved.

For further information on the Living With and Beyond Cancer Programme, please contact:

Maureen Dowling, Programme Manager, Living With and Beyond Cancer, NHS England

maureen.dowling@nhs.net/07920 251932

Jo Blackburn, Programme Officer, Living With and Beyond Cancer, NHS England

Jo.blackburn3@nhs.net/ 07918 336025

What is the National Cancer Survivorship Initiative?

The National Cancer Survivorship Initiative (NCSI) is a partnership between NHS England and Macmillan Cancer Support, co chaired by Sean Duffy, National Clinical Director for Cancer, and Ciarán Devane, Chief Executive of Macmillan Cancer Support.

Originating from the Cancer Reform Strategy (DH 2007), the NCSI from 2008 – March 2013 was a partnership between Department of Health and Macmillan, with great support from NHS Improvement.

Our aim is to ensure that those living with and beyond cancer get the care and support they need to lead as healthy and active a life as possible, for as long as possible.

Living with and beyond cancer: Taking action to improve outcomesOn March 29th 2013 we published Living with and beyond cancer: Taking Action to Improve Outcomes which will inform the direction of survivorship work in England to 2015. This document is intended to support commissioners, providers and others to take the actions necessary to drive improved survivorship outcomes. It sets out what we have learnt about survivorship, including people’s needs, their experience of care, and the impact cancer and treatment has upon their lives. It describes interventions that have been tested, and are ready to spread across England to improve survivors’ outcomes.

There are a number of key interventions that could make an immediate difference, including the introduction of an integrated package of interventions, “The Recovery Package”, which includes

  • Structured Holistic Needs Assessment and Care Planning,
  • Treatment Summaries and Cancer Care reviews
  • Patient education and support events (Health and Wellbeing Clinic)
  • Advice about and access to schemes that support people to undertake physical activity and healthy weight management.

The combination of these interventions will enable better outcomes for cancer survivors, through creating a shared understanding between patient and professionals about the issues important to the patient, what they can expect during recovery, and identifying any needs to be addressed.

This report builds on the NCSI vision document, published in January 2010, which summarised a range of evidence about the care and support available for cancer survivors, and suggested that traditional follow up arrangements – usually involving regular out-patient appointments in an acute hospital – are not meeting all the needs of survivors. The vision identified five key shifts necessary to transform cancer care and support from a one-size fits all approach to follow up to personalised care planning based on assessment of individual risks, needs and preferences.

Living with and beyond cancer [4:28]

Living with and beyond cancer [4:28]

Watch this short film that gives a concise explanation of the story of the NCSI.

If you have any enquiries please contact survivorship@macmillan.org.uk

Plans for 2014

Our work in 2014 will focus on implementation and development within four survivorship priority areas; the Recovery Package, stratified pathways of care, consequences of cancer and its treatment and PROMS, and physical activity. More information about the progress in each area is available on their dedicated pages of this website.

We will work to understand the alignment of actions necessary to improve cancer survivorship outcomes, with actions required to improve the management of long terms conditions, as we know that many of the needs are similar, such as for assessment and care planning, good information, preparation for self management, and good care coordination.   This will inform our work with commissioners.

We will progress work to embed paper-based and electronic assessment and care planning tools, including the Electronic Holistic Needs Assessment (e-HNA). The electronic tool will allow the outcome of assessments to be easily shared with members of a multi disciplinary team (MDT), which will greatly improve joined-up care.  Information from assessments can be filed, reviewed and shared more efficiently.  The number of test sites will expand in 2014 and the e-HNA developed to include specialist tools, including one dedicated for older people.

Innovation to implementation: Stratified pathways of care for people living with or beyond cancer "A how to guide"NHS Improvement published in 2013 a document encapsulating the learning from the adult cancer testing work,  Innovation to implementation: Stratified pathways of care for people living with or beyond cancer- A “how to guide”,  to support implementation in practice.

 

NCSI Programmes

The work of the NCSI was divided into the following project groups:

The work and achievements of these groups can be seen on their dedicated pages.

If you are a cancer survivor or a carer seeking immediate support, please visit www.macmillan.org.uk.

Last updated on February 5, 2014