Survivorship: A vision for 2012-15
Professor Sir Mike Richards
May 2012
1
Survivorship vision 2012-15: An overview
● Brief reflections on progress to date
● The challenges ahead
● A vision for the next 3-5 years
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Survivorship vision 2012-15: Brief reflections on
progress
● Our thinking has moved on substantially, but very few
patients are yet being touched by new models of care
● This is perhaps unsurprising: We are planning major
changes in the “aftercare” of hundreds of thousands of
patients each year
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Survivorship: Some highlights to date
● Dec 2007: National Cancer Survivorship Initiative
announced
● January 2010: NCSI vision published
● November 2011: BJC supplement on survivorship
research
● 2008-2012: Testing of new models of care (NHS
Improvement and Macmillan)
● 2012: PROMs pilot survey to be published shortly
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Survivorship: Cancer prevalence in England 2008
Total
1.66m
Males
680k
(41%)
Females
980k
(59%)
Age
0-17
12.5k
(1%)
18-64
606k
(36%)
65+
1,045k
(63%)
Breast
460k
28%
Colorectal
193k
12%
Prostate
216k
13%
Other
Derived from Maddams et al BJC 2009
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47%
Five-Year Survivors of Childhood Cancer by Age at Start of Year,
Great Britain
Courtesy of Stiller CA, UK National Registry of Childhood Tumours
6000
2001 n=21022
2011 n=31368
Projected 2021 n=42336
Total number of survivors
5000
4000
3000
2000
1000
0
5-9
10-14
15-19
20-24
25-29
30-34
35-39
40-44
Age (in Years)
45-49
50-54
55-59
60-64
65-69
70+
NCSI Vision 2010: The five shifts
1. A cultural shift – greater focus on recovery, health
and well-being
2. Holistic assessment, information provision and
personalised care planning
3. Support for self-management
4. Tailored support (not a single model of clinical follow
up)
5. Routine measurement of experience and outcomes
for cancer survivors
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NCSI 2012: Five key elements
1. Support through primary treatment from the point of
diagnosis
2. Promoting recovery
3. Sustaining recovery
4. Reducing the burden of consequences of treatment
5. Supporting patients with active and advanced
disease – interfacing with end of life care services
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NCSI 2012: First key element
1. Support through primary treatment from the point of
diagnosis
● All patients are offered/given:
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
Information about cancer and treatment options

Support for decision making

Optimal treatment to maximise chances of cure and minimise risk
of long term consequences

Support through treatment itself

Advice on work and finances (starts here)
NCSI 2012: Second key element
2. Promoting recovery
● All patients to be offered a tailored package of care
including:
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•
A treatment summary and a care plan
•
Multiprofessional advice on recovery (e.g. through a health
and wellbeing clinic or equivalent programme)
•
Exercise programmes – tailored to the individual
•
Information
NCSI 2012: Third key element
3. Sustaining recovery
New models of care to replace ‘routine clinical follow up’ e.g.

•
Remote monitoring (supported self management)
•
Telephone follow up
•
Nurse-led follow up
[Remote monitoring will require effective IT systems to ensure surveillance tests
such as CEA, CT scans, PSA, mammography etc. are done at appropriate
intervals, with results being checked and patient/GP being informed]
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
All patients knowing how to re-access specialist services if concerned

More patients taking recommended levels of physical activity

Information
NCSI 2012: Fourth key element
4. Reducing the burden of long term consequences of
treatment
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
Information: All patients being informed of possible consequences of
treatment at start and again at end of primary treatment, with advice on
what symptoms to look out for and what to do

New advice being communicated to long term survivors as and when it
becomes available

Information/training for GPs about the prevention, detection and
management of common consequences of treatment

All patients having access to specialist services for ‘rare’ and
‘intermediate’ consequences of treatment
NCSI 2012: Consequences of treatment
● A possible classification:
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
“Rare”: Only affects hundreds of survivors in England/UK.
[Brachial plexopathy following radiotherapy for breast cancer is
an example]

“Intermediate”: Affects thousands of survivors [pelvic radiation
damage is an example]

“Common”: Affects hundreds of thousands [cardiac
consequences of treatment and osteoporosis are examples]
NCSI 2012: Fifth key element
5. Supporting patients with active and advanced
disease
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
Identifying all patients with active and advanced disease –
and recording date of recurrence/metastasis

Multiprofessional assessment of needs and care planning

Access to CNS/key worker

Effective interface with end of life care services
NCSI 2012: Key challenges for 2012-15
● The culture shift: Engaging and influencing stakeholders.
Refining the vision
● Spread of “roll-out ready” elements
● Further testing of “promising” proposals, with emphasis on costs
and benefits (to influence commissioners)
● Costing of whole pathways
● Development and implementation of metrics for survivorship
● Development of IT for remote surveillance
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NCSI 2012: Service implications
● New services to promote recovery
● Fewer patients requiring routine follow up
● Remote monitoring/surveillance
● Better ambulatory care assessment/management of patients when
they develop problems
● Fewer emergency admissions
● New services for patients with consequences of treatment
● New models of care to support patients with active and advanced
disease
i.e. A fairly radical change
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NCSI 2012: Metrics (1)
● We need good measures of:

Structure
e.g.
Service models established
Key workers/CNSs for active and advanced
disease

Process

Outcomes
• Linked to NHS Outcomes Framework
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NCSI 2012: Metrics (2)
● Examples of process measures: Number/proportion of patients
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
With access to CNS at diagnosis and recurrence

Receiving information at different phases of the survivorship
pathway

Receiving treatment summaries/care plans

Accessing rehabilitation/reablement programmes

Accessing services for consequences of treatment

Emergency admissions in first year of diagnosis

Emergency admissions after first year
NCSI 2012: Metrics (3)
● Measuring outcomes
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
Domain 1:
Survival
Incidence of life threatening conditions

Domain 2:
QOL (PROMs: National and local)

Domain 3:
Recovery (PROMs and length of stay)

Domain 4:
Patient experience of care (surveys)
NCSI vision for 2015
● All cancer networks, CCGs and providers will have responded to
“NCSI 2012” with local action plans
● “Rollout ready” services will have been implemented in x% of
Trusts, with y% of patients being managed differently at point of
recovery and z% being managed remotely during follow up
● Whole system ‘demonstrators’ will have shown benefits to
patients and affordability to commissioners
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NCSI 2012-15: Summary
● The key elements of good care for survivors of cancer are
becoming much clearer
● Some elements are ‘rollout ready’. Others need further
development
● We need your help in defining this at this workshop
● Our next challenge is to start the whole system transformation
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