Survivorship: A vision for 2012-15

Professor Sir Mike Richards

March 2012

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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: 2 disclaimers

1. The new survivorship ‘document’ has not yet been written. These are ideas in evolution

2. This presentation was prepared before hearing other presentations today: Apologies for omissions

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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 2008Total 1.66mMales 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 47%

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Derived from Maddams et al BJC 2009

Five-Year Survivors of Childhood Cancer by Age at Start of Year, Great BritainCourtesy of Stiller CA, UK National Registry of Childhood Tumours

5-9 10-14 15-19 20-24 25-29 30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69 70+0

1000

2000

3000

4000

5000

60002001 n=21022 2011 n=31368 Projected 2021 n=42336

Age (in Years)

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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: 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)

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NCSI 2012: Second key element

2. Promoting recovery

● All patients to be offered a tailored package of care including:

• 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

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NCSI 2012: Third key element3. 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]

All patients knowing how to re-access specialist services if concerned More patients taking recommended levels of physical activity Information

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NCSI 2012: Fourth key element

4. Reducing the burden of long term consequences of treatment 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

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NCSI 2012: Consequences of treatment

● A possible classification: “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]

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NCSI 2012: Fifth key element

5. Supporting patients with active and advanced disease 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

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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 establishedKey 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

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

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NCSI 2012: Metrics (3)

● Measuring outcomes 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)

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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

● Our next challenge is to start the whole system transformation

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