Transcript Living with and beyond cancer

Beyond Primary Treatment
Professor Jane Maher
Joint Chief Medical Officer
Macmillan Cancer Support
Perspectives
• The user voice must be the driver ....
Where do patients want us to go?
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Easy to get concerns heard
Quick diagnosis
Timely treatment
Planned stages of care
Supported rehabilitation and aftercare
Support for carers
Psychological support
Better outcomes
By 2020
almost half of
Britons will
get cancer in
their lifetime
But 38% will
not die from
the disease
The number of people living with
cancer will double by 2030
Long term conditions and multimorbidities
http://www.macmillan.org.uk/Documents/AboutUs/Research/Researchandevaluationreports/Routesfrom-diagnosis-report.pdf
Three broad groups of cancers
Do well
Estimated
prevalence
Estimated
incidence
1,170,000
56%
127,000
38%
460,000
22%
70,000
21%
Intermediate
Poor
health
180,000
9%
95,000
29%
Spend per Patient In Treatment and Survivorship Phases by
Survivorship Outcome Pathway (£K)
( NCSI report 2012)
££
Average Cost Across All
Pathways: £13,006
Treatment
Aftercare
Sub 1 year
Survival
Short Term
Survival
0-1 Year
Survival
1-3 Year
1-5 Year
Survival,
Survival, No
Cancer
Complications
Complications
9%
Short Term
Recurrence
Pre Existing
Morbidities
Medium Term
Recurrence
Living
with Cancer
Survivors with
Chronic
Conditions
1-5 Year
Survival, Non
Cancer
Complications
3-5 Year
Survival,
Cancer
Complications
Continued
Survival,
Cancer
Complications
Continued
Continued
Survival, Non
Survival, No
Cancer
Complications
Complications
56%
46%
39%
Increasing
length
41%
57%of survivorship
58%
Complication
Free Survival
22%
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Diagnosis &
Treatment
Recovery
Early monitoring
Later
monitoring
Gaps
Progressive illness End of life care
Different cancers have different shapes
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NCSI report 2013
Classification
of CoT
Rare/
complex
Several hundred,
requiring highly
specialist care
Tens of thousands,
Intermediate
requiring proactive
management by
health services
Common
Risks affecting
hundreds of
thousands
Dept of Health survivorship PROMS
•Urinary leakage and difficulty
controlling bowels
- rates exceeded general
population
•Detectable impact on EQ5D
- no less prevalent 5 years
after treatment
Glaser et al 2013 BMJ Open
Corner et al 2013 BMJ Open
Estimating prevalence of consequences for
colorectal survivors, 2010
Time since
diagnosis 1yr
2yrs
5yrs
10yrs
24%
urinary leakage
=> ~ 50,000
19%
Poor bowel control
=> ~ 40,000
19% sexual difficulties
=> ~ 40,000
Source: Estimates using prevalence data and patient reported outcome measures, Maddams et al; Glaser et al.
Macmillan – ‘Throwing Light’
Estimated number of people affected in UK,
up to at least 10 yrs post diagnosis
(all cancer types)
Bowel dysfunction
90,000
Bladder dysfunction
150,000
Sexual difficulties
350,000
48 gastroenterologists
accepting referrals for
PRD
16 gastroenterologists
thought to be accepting
referrals for PRD
Total Prevalence - now
Total Prevalence - 2030
Diagnosis
&
Treatment
Rehabilitation
Early
Monitoring
Later
Monitoring
Progressive
Illness
End of Life
Care
(Year 1
Deaths)
•Breast 70-80%
•Colorectal 50%
•Prostate 40-50 %
http://www.evidence.
nhs.uk/qipp
Partnership
• Each stage of management and care
involves several partners
• Linkage is essential
• The key partner is the person with cancer
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http://www.nationalgalleries.org/collection/artists-a-z/C/3029/artist_name/Ken%20Currie/record_id/2875
Partnership
• Each stage of management and care
involves several partners.
• Linkage is essential
• The key partner is the patient
• Improvement begins through looking at
data and scrutinising it jointly.
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A way of linking and analysing routinely
collected data
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Maps the cancer journey from diagnosis through
to death
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Describes health outcomes i.e. survival times,
incidence, prevalence of cancer and non related
cancer morbidities.
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Tells us how patients interact with the system
e.g. interaction with health care services, when,
how long and cost
10 UK large scale whole systems
change programmes
19 CCGs, 26 hospitals, over 30 LAs,
11 Health Boards, 5 H&SC trusts
330,000 cancer population
What will good look like?
• A system that is responsive to each type of
cancer to the same level of quality
• A planned personal pathway
• Support for cancer patients and families
• Responsive and responsible for all
elements of care