Beyond Primary Treatment

Professor Jane MaherJoint Chief Medical OfficerMacmillan Cancer Support

Perspectives

• The user voice must be the driver ....

Where do patients want us to go?

• 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/Routes-from-diagnosis-report.pdf

70,000 21%

Do well

Estimated prevalence

Estimated incidence

Poor health

Intermediate

95,00029%

127,00038%

460,000 22%

1,170,000 56%

180,000 9%

Three broad groups of cancers

££

TreatmentAftercare

Share of

spend on

Survivorship

Phase

Sub 1 year Survival

Short Term Survival

Short Term Recurrence

Pre Existing Morbidities

Medium Term Recurrence

Living with Cancer

Survivors with Chronic Conditions

Complication Free Survival

0-1 Year Survival

1-5 Year Survival, No Complications

1-3 Year Survival, Cancer Complications

1-5 Year Survival, Non Cancer Complications

3-5 Year Survival, Cancer Complications

Continued Survival, Cancer Complications

Continued Survival, Non Cancer Complications

Continued Survival, No Complications

9% 41% 57% 58% 56% 46% 39% 22%

Spend per Patient In Treatment and Survivorship Phases by Survivorship Outcome Pathway (£K)

( NCSI report 2012)

Increasing length of survivorship

Average Cost Across All Pathways: £13,006

15

Diagnosis & Treatment Recovery Early monitoring End of life careProgressive illnessLater

monitoring

GapsGaps

9

Different cancers have different shapes

NCSI report 2013 Classification of CoT

Rare/complex

Several hundred, requiring highly specialist care

Inter-mediate

Tens of thousands, requiring proactive management by health services

Common Risks affecting hundreds of thousands

Glaser et al 2013 BMJ OpenCorner et al 2013 BMJ Open

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

=> ~ 40,000

=> ~ 40,000

=> ~ 50,00024%

urinary leakage

19%Poor bowel control

19% sexual difficulties

Estimating prevalence of consequences for colorectal survivors, 2010

1yr 2yrs 5yrs 10yrsTime since diagnosis

Source: Estimates using prevalence data and patient reported outcome measures, Maddams et al; Glaser et al.

Bowel dysfunction 90,000

Bladder dysfunction 150,000

Sexual difficulties 350,000

Estimated number of people affected in UK, up to at least 10 yrs post diagnosis(all cancer types)

Macmillan – ‘Throwing Light’

48 gastroenterologists accepting referrals for PRD16 gastroenterologists thought to be accepting referrals for PRD

Total Prevalence - now

Total Prevalence - 2030

Diagnosis & Treatment

RehabilitationEarly Monitoring

Later Monitoring

Progressive Illness

End of Life Care(Year 1 Deaths)

•Breast 70-80% •Colorectal 50% •Prostate 40-50 %

•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

13

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.

• A way of linking and analysing routinely collected data

• Maps the cancer journey from diagnosis through to death

• Describes health outcomes i.e. survival times, incidence, prevalence of cancer and non related cancer morbidities.

• 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