united hospitals nhs foundation trust 8 th annual cancer conference tuesday 20 october 2009 nhs...
TRANSCRIPT
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”
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
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