National Cancer Survivorship Initiative

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

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2009 2015 Time

InvestigateInnovate

Implement

We are here

2012 should be a step change

National Cancer Survivorship Initiative

If we go no further, we’ve failed

National Cancer Survivorship Initiative

Turn promising examples into routine practice

Our challenge:

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

Next steps document

NDP workshops

NCSI workstreams

Feedback from patients Feedback

from clinicians

Pilots and test sites

Research NCSI Symposium

National Cancer Survivorship Initiative

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

Promoting recovery

Sustaining recovery

Managing consequences

of treatment

Active & recurrent disease

National Cancer Survivorship Initiative

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