UNITED HOSPITALS NHS FOUNDATION TRUST

8th ANNUAL CANCER CONFERENCE

TUESDAY 20 OCTOBER 2009

NHS IMPROVEMENT – DIRECTOR – CANCER

The title for this section …………

“Survivorship: What is it?

A Review of the National Cancer Survivorship Initiative”

INTRODUCTION

• NHS Improvement role as an organisation?

• My role?

• Plan today for this session?

What does the term survivorship mean?

Anyone who is living with or beyond a cancer diagnosis ….. at Day 1 a patient becomes a survivor

Source: The Cancer Reform Strategy, Chapter 5 & NCSI Vision Document

Background

1400/1600 new cases/year – <16 yr olds

2800/3200 new cases/year – 16-29 yr olds

78% 5 year survival

26,000 survivors

67% with chronic condition

30% with long term effects

>50% lost to follow up

How did this term originate & what is the story so far?

• Key initiative of the Cancer Reform Strategy (December 2007)

• National Cancer Survivorship Initiative launched in September 2008

“The aim of the NCSI is, by 2012, to have taken the necessary steps to ensure that survivors get the care and support they need to lead as healthy and active a life as possible for as long as possible”

Source: NCSI Vision working document – Sept 2009

What is the NCSI in practical terms?

• A 5-year national initiative• In partnership with the DH, Macmillan & NHS

Improvement• NCSI has a National Steering Group chaired

by Professor Mike Richards, National Clinical Lead and Ciaran Devane, CEO, Macmillan

• National Clinical Lead identified for the clinical workstreams, managerial lead and a nominated chairperson for each of the workstreams

7 workstreams with a specific focus on:

- Children & young people

- Assessment & care planning

- Long term consequences of cancer & treatment

- Active & advanced disease

- Workforce & finance

- Self-management

- Research

The Children & Young People WorkstreamNational Clinical Lead Adam Glaser, Clinical Oncologist, Leeds

Managerial Lead Patricia Morris, NHS Improvement

Chair of CYP Steering Group Carole Easton, formerly CEO CLIC Sargent

Clinical Reference Group

Gill Levitt London

Adam Glaser Leeds

Prof Mike Hawkins Birmingham

Louise Hooker CAT/Southampton

Beverley Horne Leeds

Rod Skinner Newcastle upon Tyne

Elaine Sugden Oxford

Andy Toogood Birmingham

Working relationships

PARTNERSIN

NCSI

DEPT OF HEALTH* MACMILLAN * NHS IMPROVEMENT*

CLINICAL REFERENCE GROUP – CLINICAL

ADVISORS

CHILDREN & YOUNG PEOPLE STEERING GROUP

WORKING LINKS & ADVICE FROM OTHER NCSI WORKSTREAMS

CYP TEST SITE TEAMS TESTING NCSI PRIORITIES

WORKING PARTNERSHIP & ADVICE FROM OTHER STATUTORY BODIES

LOCAL CANCER NETWORK SERVICE IMPROVEMENT

EXPERTISE

NATIONAL CANCER SURVIVORSHIP GROUP

TEST SITE STEERING GROUPS MANAGING LOCAL

TESTING

For Children & Young People Workstream CLIC Sargent/Teenager Cancer Trust = ACTIVE PARTNERS KEY: Accountable - - - - - - - - - Advisory

ORGANISATIONAL CHART – WAYS OF WORKING

Important elements of the CYP workstream:

• Safe Risk Stratification

• Evaluating patient experience

• Research & evidence

• Providing the evidence to validate the testing work

CYP Workstream - Four Principles

Principle 1 personalised, risk-stratified care

Principle 2 a shift to informed self-management

Principle 3 easy access to universal and, where necessary, specialised services

appropriate to their needs

Principle 4 realistic/evidence-based/cost effective

“models of care”

What are our objectives?

• Test out models and evaluate “models of care” that will inform future policy

• To improve clinical support and care• To enhance efficiency• To promote information sharing• To ensure inclusive approach to living beyond

cancer• To provide robust evidence to convince wider

NHS change is needed

Who is involved?

Who is involved in the testing ?

The test sites so far

17 test sites focusing on adult services

10 test sites focusing on children and young people

27 projects

…… although working in parallel at this stage the pathway/transition needs to be smooth

Summary of progress so far

- Patients’/carers’ involvement at national and local level

- Clinical leadership

- Identified what is important to survivors as basis for testing

- Measures established

- Care Plan launched in September

- Safe Risk Stratification exercise ready to start

- Review of clinical evidence underway

What are we aiming to achieve by March 2010?

Summary of expected outcomes by March 2010:

- Survivorship care plan framework tested/ready to roll out- Tangible/measurable outcomes for IT system work in Leeds- Case studies produced demonstrating progress from each test

site- Emerging principles for new models of care- Identification of issues for cancer survivors in non-clinical areas

in partnership with DH and charities- Evidence !!!

Some of the challenges

• Maintaining focus and momentum to make change happen

• Sticking to timeframes• Ensuring we have the evidence to persuade• Making sure that we build on existing good practice• Effectively sharing information• Engaging key individuals and groups that can support

this initiative• Ensuring we link with work in adult workstream

Early themes & learning emerging

• Care plans, shared widely, are basic requirement• It is important to use technology to best effect when

designing follow-up for patients• Need to reduce meaningless follow-up appointments• No one size fits all!• A shift is needed in terms of the “language” used in

relation to individuals living with and beyond cancer• Evidence needs to be meaningful to the current

health economy

Key messages so far

• Real commitment to make change happen• Test sites are enthusiastic with a clear focus• Successful change is never straightforward• The results will be immensely rewarding• This work has the ability to influence future

services

Thank you very much for listening

patricia.morris@improvement.nhs.uk

Now let us hear from Rachel Cox,

Clinical Lead for the CYP Survivorship testing work in Bristol