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 Workstream
National Clinical Lead
Managerial Lead
Chair of CYP Steering Group
Adam Glaser, Clinical Oncologist, Leeds
Patricia Morris, NHS Improvement
Carole Easton, formerly CEO CLIC Sargent
Clinical Reference Group
Gill Levitt
Adam Glaser
Prof Mike Hawkins
Louise Hooker
Beverley Horne
Rod Skinner
Elaine Sugden
Andy Toogood
London
Leeds
Birmingham
CAT/Southampton
Leeds
Newcastle upon Tyne
Oxford
Birmingham
Working relationships
ORGANISATIONAL CHART – WAYS OF WORKING
PARTNERS
IN
NCSI
DEPT OF HEALTH*
MACMILLAN *
NHS IMPROVEMENT*
NATIONAL CANCER SURVIVORSHIP GROUP
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
TEST SITE STEERING
GROUPS MANAGING LOCAL
TESTING
LOCAL CANCER NETWORK
SERVICE IMPROVEMENT
EXPERTISE
For Children & Young People Workstream CLIC Sargent/Teenager Cancer Trust = ACTIVE PARTNERS
KEY:
Accountable - - - - - - - - - Advisory
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