Developing the NCSI 2012 document:
taking action to improve outcomes
National Cancer Survivorship Initiative
What I will cover
• Why now?
• Purpose
• Process
• Emerging thoughts
• What we need from you
National Cancer Survivorship Initiative
Why now? (1)
• Cancer survivors needs are not being fully met
• Poor survivorship:
– Damages outcomes (mortality, quality of life, patient
experience)
– Costs money (preventable ill health, avoidable
emergency admissions more expensive treatment and
care)
• We can’t do more of the same - from 1.7 million
survivors now to 3 million in 2030...
National Cancer Survivorship Initiative
Why now? (2)
• To date focus has been:
–
–
–
–
Researching – extent, needs, impact
Developing – communities of interest
Testing – new approaches
Evaluating – feasibility, effectiveness
• But not many patients have benefitted in the ‘real
world’...
• Some interventions are ‘rollout ready’ - now we
need to deliver better survivorship support at scale
National Cancer Survivorship Initiative
Engagement with clinicians &
commissioners
2012 should be a step change
Implement
Investigate
2009
Time
National Cancer Survivorship Initiative
Innovate
2015
We are here
If we go no further, we’ve failed
National Cancer Survivorship Initiative
Our challenge:
Turn promising examples into routine
practice
National Cancer Survivorship Initiative
Moving on from uncertainty
National Cancer Survivorship Initiative
Good survivorship will...
1
Help people live longer
2
Improve their quality of life
3
Support them in making a faster and fuller
recovery from cancer
4
Enhance their experience of care
5
Protect them from avoidable harm
National Cancer Survivorship Initiative
Developing the document
Pilots and
test sites
NCSI
workstreams
Feedback
from patients
NDP
workshops
National Cancer Survivorship Initiative
Next steps
document
NCSI
Symposium
Feedback
from
clinicians
Research
Testing our thinking
• NCSI project templates
• ‘Dragon’s Den’
• NDP workshops
• Macmillan clinical advisory board
• Today
National Cancer Survivorship Initiative
Taking action
National Cancer Survivorship Initiative
Treatment
Active &
recurrent
disease
Managing
consequences
of treatment
National Cancer Survivorship Initiative
Promoting
recovery
Sustaining
recovery
Support from point of diagnosis
• Survivorship starts from the point of diagnosis – work discussions
start now
• Patient experience and quality of life are linked: taking action to
improve one will benefit the other
• Critical role of CNSs / AHPs
• Peer Review?
• National Cancer Patient Experience Survey?
• Information prescriptions?
National Cancer Survivorship Initiative
Promoting recovery
• The package (assessment and care planning, treatment summary,
cancer care review and health and wellbeing clinics)
• Prehabilitation
• ‘Rehabilitation prescriptions’?
• Tariffs for phases of care? Best practice tariffs? CQUINs?
• Peer Review?
National Cancer Survivorship Initiative
Sustaining recovery
• If physical activity was a drug, its efficacy would mean it was
considered a ‘wonder drug’
• Follow-up: tailored and risk stratified
• Efficiencies in follow-up need to be matched by investments in
other areas of the survivorship pathway – but whose
responsibility is this?
• Cancer care review template?
• National Cancer Patient Experience Survey?
• Best practice tariff?
National Cancer Survivorship Initiative
Managing the consequences of treatment
• Most patients will need to manage some consequences of their
treatment
• The nature of consequences will vary – ‘the Maher classification’
• Failure to manage the consequences costs money and lives
• Breast Radiotherapy Injury Rehabilitation Service (BRIRS)
• READ codes
• CQUIN for use of PROMs
National Cancer Survivorship Initiative
Managing the consequences of treatment – key
principles
• Prevent or minimise consequences where possible
• Inform patients of potential consequences when these are known and document
these in treatment summaries
• Identify groups at increased risk of late effects (long term follow-up of patients in
trials; recording through national datasets)
• Monitor at risk patients consistently
• Respond where a new risk is identified, utilising PROMs and health service
datasets and informing patients
• Provide appropriate services for patients suffering from the consequences of
treatment
National Cancer Survivorship Initiative
Active and recurrent disease
• Key principles for survivorship apply
• CNSs and palliative care really matter
• Addressing weaknesses in the intelligence is a priority
• What does the metastatic MDT look like?
• What are the true costs of active and recurrent disease?
• Which outcomes matter most to patients?
National Cancer Survivorship Initiative
National Cancer Survivorship Initiative
Your task
• Have we identified the right issues?
• How do we get the whole system to prioritise
survivorship support?
• Will the levers work?
• What are we missing?
National Cancer Survivorship Initiative
It’s as easy as x, y, z...
X% of providers implementing rollout ready interventions
Y% of patients being managed differently at the point of recovery
X% being managed remotely during follow-up
National Cancer Survivorship Initiative