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Communicating the National Cancer Survivorship Initiative Vision

Stephen Hindle

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Cancer Survivorship: 5 key facts

1. Number of survivors in UK will increase from 2m to 4m by 2030.

2. Many people with incurable cancer can live good quality lives for years. There are different patterns of incurable disease: chronic (both from cancer and from cancer treatment), progressive, dying.

3. Current face to face out patient follow up doesn’t meet patients’ needs, isn’t good value for money, and won’t cope with increasing numbers.

4. NCSI propose 5 Key Shifts to significantly improve quality of aftercare for cancer survivors.

5. These shifts are cost effective through targeting resources on those that need them (risk statification) and better assessment/ coordination of care (Manchester Monitor work)

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Cancer Survivorship: 5 key facts

1. Number of survivors in UK will increase from 2m to 4m by 2030.

2. The cancer story is changing. Many people with incurable cancer can live good quality lives for years. There are different patterns of incurable disease: chronic disease caused by cancer, chronic disease caused by cancer treatment, progressive, dying.

3. Current face to face out patient follow up doesn’t meet patients’ needs, isn’t good value for money, and won’t cope with increasing numbers.

4. NCSI propose 5 Key Shifts to significantly improve quality of aftercare for cancer survivors.

5. These shifts are cost effective through targeting resources on those that need them (risk statification) and better assessment/ coordination of care (Manchester Monitor work)

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Why it’s got to shift – the evidence

1. Better coordination of care improves quality, and uses NHS resources efficiently (Monitor Manchester study).

2. Patients believe follow up spots recurrences, but estimated >75% recurrences can be picked up without face to face follow up, (by symptoms or scheduled blood tests/imaging/endoscopy).

3. Risk stratification will identify who needs the most help, and where we can stop spend on ineffective services.

A reduction in ‘empty’ out patient appointments could pay for improved aftercare services.

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Why it’s got to shift – the evidence (2)

4. Rapid Review of Follow Up: NHS Improvement 2009 General model is traditional follow up over 5 to 10 yearsLittle use of clinical risk stratificationNo common assessment, often no written care plan, patients have little choice or control

5. Patient Experience of Care Survey: Picker 2009Many want more information on physical & emotional aspects, diet and exercise at end of treatmentMajority didn’t know who to contact out of hoursWritten up to date care plans not the norm.

The current system isn’t working for patients.

Why it’s got to shift – what people living with and beyond cancer want

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Five Key Shifts

1. Cultural shift in approach, from focus on cancer as acute illness to greater focus on recovery, health, and well-being after treatment.

2. To assessment, information provision and personalised care planning based on assessment of individual risks, needs, preferences.

3. From clinically led approach to supported self management, empowering taking of responsibility , supported by clinical assessment.

4. To tailored support to enable early recognition of consequences of treatment and signs & symptoms of further disease, & personalised support for those with advanced disease.

5. From emphasis on measuring clinical activity to measuring experience and outcomes for cancer survivors through routine use of PROMS.

Change the thinking and culture around cancer from a disease treated in the acute sector, to

More focus on recovery, health and well being, return to work

Preparing people for the long term – living with and beyond cancer

What’s got to shift:Cultural shift Shift 1

Level of need Estimated % of patients ( vary according to cancer, individual &

treatment )

Currently

Level 1 – supported self-care with quick access back into the system if and when needed to improve early detection

c75% (<10%)

Level 2 – level of requirement requiring regular primary or secondary care input

c20% (90%)

Level 3 – highly complex patients requiring case management by an assigned key worker (often a CNS) actively managing and “joining up” care for the patient

c5% (<1%)

Shift from “Follow-up” to “Aftercare”

Shift to every patient having an assessment, information, and a personalised care plan, so that their unique needs can be met.

Assessment, information provision and care planning (ACP)

Shift 2

At least a quarter of cancer patients have unmet needs a year after treatment due to cancer or the treatment. (Armes et al 2009).

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Testing impact of:

Consistent approach to ACP at two points in cancer pathway

MDT communication to primary care (treatment summary record) at end of treatment

Templates for improving quality of GP Cancer Care review

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Macmillan is funding 15 pilot HWB Clinics across the UK

HWB Clinics happen at the end of treatment, where patients hear from professionals about managing their cancer, signs and symptoms, and how to get help.

They will get help with lifestyle management, and information about self management and support groups.

Volunteers will be key to the clinics, meeting & greeting, organising and offering peer support.

Health and Well Being Clinics

Using self assessment tools to stimulate better conversations …..

Velicova 2005

Significantly better discussions between patients and both doctors and nurses when person affected by cancer has completed an electronic self assessment form

Children & Young People

Testing models of:

Survivorship Treatment Plans and Pathways

Appropriate follow-up and risk stratification.

Continuing support of education needs

Dealing with non-clinical issues to ensure ‘normal’ life following diagnosis and treatment.

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Supporting patients return to work

Nearly 800,000 cancer

survivors are of working age Testing model of helping people get

back to work ‘vocational rehabilitation’ through pilots.

Providing support for employers.

Study into patient experience of DWP programmes.

Developing thinking about carers’ issues.

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What’s got to shift :

Self management support:

“self management support is what health services do in order to aid and encourage people living with a long term condition to make daily decisions that improve health related behaviours and clinical, and other outcomes”

Shift 3

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Shift depends on three elements:

Self management education and training programmes

Skills development for professionals

Institutional support for service redesign

‘Activates’ & empowers people, promoting self management skills (goal setting, action planning)

Improves quality of life, knowledge of condition, coping behaviour, self efficacy, and symptom management.

Lifestyle change more important for cancer survivors than others

Obesity

Dietary fat intake

Exercise

Smoking

Health and well being clinics offer opportunities for all to learn more about how to manage their disease

What’s got to shift:Tailored support - consequences of treatment

New illnesses emerge months, years, decades later. A quarter of survivors live with significant consequences of treatment .

Need to move from single model of follow up so that people get the right treatment and support

Avoidable consequences avoided

Unavoidable consequences recognised & managed to minimise disability

Shift 4Shift 4

What’s got to shift (4)Personalised support for those with advanced disease

Need to know when and how to seek medical support when worried about possible recurrence

Need specialist services for recurrent / advanced disease

Need clear process re transition to End of Life Care,

What’s got to shift:Patient Reported Outcome Measures (PROMS) to

Identify & target populations with needs

Promote better conversations with professionals

Trigger “information prescriptions”

Monitor change

Measure outcomes

Shift 5

What underpins the shifts (1)Research - including Review of survivorship evidence

Mapping of ‘survivorship journey’ for common and less common cancers

Review of outcome measures in self management

Review of current practices in follow up

NCRI Rapid review of research into survivorship and End of Life Care

2010 focus on research about risk stratification

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Cancer registry

Radiation episode statistics

Chemotherapy prescriptions

Hospital episode statistics

GP research database Patient reported outcomes

Insight from combining data sources

What underpins the shifts (2)NCSI Test communities:

NHS Improvement running adult and children pilots in England and Wales about assessment and care planning. Will follow up successful pilots by ‘prototyping’ models for further roll out and testing.

Macmillan running pilots testing

Health and Well Being Clinics

Vocational rehabilitation

Complex consequences of treatment (RAGE)

Supported self management

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What underpins the shifts (3) Community of Influence: Consequences of Treatment

Macmillan and DH initiated community of influence to:

Deliver work to develop understanding of issues within field of long term consequences of treatment.

Provide leadership to further influence thinking and profile of consequences of treatment.

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What underpins the shifts (4): User involvement

What happens next:

1. Commissioning guidance for survivors

Initial evidence used to create commissioning guidance for autumn 2010 to inform 2010/2011 planning.

Ongoing 2010/11 testing, prototyping and research provides evidence to revise commissioning guidance for autumn 2011.

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2. Ongoing engagement with clinical community

Work with communities of practice, Royal Colleges

Publication of peer reviewed articles in respected journals.

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We have six expectations of NCSI

A document describing our vision of the care of people living with or beyond cancer

A supporting implementation plan

A set of models of care which we have piloted and we know work, which will be commissioned by PCTs and practices

Acceptance of ‘survivorship’ as a priority for patients

Translation of the vision into action at a local level, using approaches similar to those tested

A community of interested people who will continue to lead this agenda

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Who are the two million cancer survivors?

0-17 16,000 0.818-64 774,000 38.765+ 1,210,000 60.5

Sex / Age / Site Cancer survivors

%

Male 800,000 40Female 1,200,000 60

Colorectal 250,000 12Lung 65,000 3Breast 550,000 28Prostate 215,000 11Other 920,000 46

National Cancer Survivorship Initiative

Survivorship Care and Support Pathway

Diagnosis Primary treatment

Survivorship care plan –

living document setting out aftercare

Remission / Follow up

Recurrence

Advanced / Active

Disease

2nd & Subsequent Treatments EofLC

Remains wellLate / Long term effects

Remains Well

Crosscutting themes of work/education, finance, self management, research, information, commissioning