Transcript Slide 1

National Cancer Survivorship Initiative
Central Hall, Westminster
Monday 21 September 2009
Key Messages
National Cancer Survivorship Initiative
Assessment and Care Planning
Ciarán Devane
Chair, Assessment and Care Planning Workstream
Two Million Survivors
But how many have a
care plan for survivorship?
National Cancer Survivorship Initiative
Two Million Survivors
But how many GPs are aware
of the treatment that their patients have
received and their survivorship care plan?
National Cancer Survivorship Initiative
Two Million Survivors
But how successfully does the GP
Cancer Care review meet their needs?
National Cancer Survivorship Initiative
Two Million Survivors
But how does Follow Up care
need to change to meet their needs?
National Cancer Survivorship Initiative
National Cancer Survivorship Initiative
Active and Advanced Disease
Steven Wibberley
Support, Active and Advanced Disease Workstream
What we’ve done
Workshops on:
• What is meant by
Active & Advanced
Papers reviewing:
• Patterns of disease
• Developing ‘coping’
• Patient-centred
support
• Patient-centredness
in primary care
• Primary care setting
• Quality of health, living,
being and dying
• Transitions
to EOLC
National Cancer Survivorship Initiative
• End of life
transitions
Priorities
Well-being - living with and beyond cancer
• Coping, wellness, the ‘new normal’, relationships
Getting back into the system on recurrence
• Self-referral, pathways from primary care, treatment by MDT, role of A&E
Transition to End of Life Care
• Who decides and when, communications
– early involvemnent of palliative care
Ongoing assessment and care plans
National Cancer Survivorship Initiative
Our ideal world would look like ...
Everyone has
a personalised care
plan
Easy access to
support and rehab
services
Prompt and
sensitive pathways
back into the
system
EoLC decisions
are made together
by patients and
professionals
National Cancer Survivorship Initiative
National Cancer Survivorship Initiative
Long Term Consequences of Treatment
Alastair Munro
Professor of Radiation Oncology, University of Dundee
The Consequences of Cancer and its Treatment
• cause problems that currently affect 400,000 people
• have significant impact on daily life
• are both physical and psychological
• may be hard to identify, for both patients and professionals
• have significant economic impact
• are insufficiently appreciated and understood
• are secretly consuming resources
• can be managed efficiently and effectively
– early intervention ⇒ prevention
– later intervention ⇒ decreased impact
• provide an ideal test-bed for exploring self-care
National Cancer Survivorship Initiative
How to improve matters: the decision space
SEVERITY / COMPLEXITY
S
C
A
L
E
National Cancer Survivorship Initiative
How to improve matters: the way forward…?
• liaison with primary care and consumers
• record-linkage for identification of problems and syndromes (clinical informatics)
• systematic review of available knowledge
• developing new pathways and models of care – resolving the centralisation paradox
–
–
–
–
self-care and social networking
peripatetic experts?
one-off clinics?
the virtual MDT?
• economic analysis & spending to save
• devising and assessing new interventions
these are complex issues - which is why we would appreciate
your help with this afternoon’s workshop
National Cancer Survivorship Initiative
National Cancer Survivorship Initiative
Self Management
Jessica Corner
Chair, Self-Management Workstream
Self Management Support Workstream
National Cancer
Survivorship Initiative
Where are we now?
Self Management in cancer
National Cancer Survivorship Initiative
Self Management support is what health services do
to encourage cancer survivors make decisions that
improve their health and clinical outcomes.(THF)
Collaborative professional
– patient relationship
+
1. Self management programmes
2. HCPs supporting self management
in routine clinical practice
3. Aftercare services:
Care co-ordinator/supporter
Interactive technologies
Internet/telephone
National Cancer Survivorship Initiative
Self
management
Support
Cancer survivorship and self management: Reviewing evidence
• Review of evidence base for self management support for cancer
survivors (and drawing on work in long term conditions)
February 2008 Fenlon and Foster 2008)
• Mapping – a snapshot of services identified as supporting self
management (Mar – July 2008)
• Review of outcome measures for self management support in the
context of cancer survivorship April 2009 (Davies 2009)
• Updated review of the evidence for follow-up support services (Ongoing)
• Review of the evidence for impact of specific lifestyle factors on
recovery, progression and health related quality of life (ongoing)
National Cancer Survivorship Initiative
Current Activity: Testing the framework
• First test site:
– Test community Birmingham East and North PCT/HOE NHS Trust/Pan
Birmingham Cancer Network Self management programme for patients
and advanced development programme for professionals as part of a
redesigned follow-up and support pathway for breast cancer patients
at Good Hope Hospital.
• Scoping an additional two potential test sites.
• Working with other workstreams to develop and test approaches
for survivors living with advanced disease, and for survivors
experiencing long-term consequences of cancer and its treatment.
National Cancer Survivorship Initiative
National Cancer Survivorship Initiative
Work and Finance
Barbara Wilson
Chair, Work and Finance Workstream
What we’re dealing with
• Basic provision of information,
advice and support about work
and financial support is not offered
to cancer patients, their families
or carers
• Vocational rehab services for those
who want to return to work during
or after cancer treatment are largely
non existent
• Employers do not know how to
support staff who have cancer
National Cancer Survivorship Initiative
Progress to date
• We have reviewed the literature on work and cancer
and identified key gaps
• We have developed a proposed model of vocational
rehabilitation for cancer patients
• We have commissioned a study to explore whether
DWP employment programmes meet the needs of cancer patients
• We are working closely with Macmillan’s Working Through
Cancer pilot to develop and test a toolkit of resources
for employers
National Cancer Survivorship Initiative
Key areas where we’re seeking your views
• A new model of
vocational rehabilitation
• Providing triage tools about
work and financial matters
from diagnosis onwards
• Strategy for increasing
employers’ knowledge
and awareness about how
to support employees
affected by cancer.
National Cancer Survivorship Initiative
National Cancer Survivorship Initiative
Children and Young People
Carole Easton
Chair, Children and Young People Workstream
Children and Young People
•
Personalised targeted follow up
•
Reduction in numbers lost to follow up
•
Reduction in empty episodes
•
Risk stratified
•
Informed supported self management
•
Evidence based
•
Access to universal and specialised community services
•
As close to home as possible
•
Cost effective
National Cancer Survivorship Initiative
Children and Young People
Living as normally as
possible for as long as possible
National Cancer Survivorship Initiative
Children and Young People
Having the best possible
experience of living with
and beyond cancer
National Cancer Survivorship Initiative