stephen hindle survivorship programme lead · 2016-07-06 · national cancer survivorship...

National Cancer Survivorship Initiative

Stephen Hindle

Survivorship Programme Lead 26th March 2013


What will be covered?

• History of NCSI

• What we now know

• Recommendations in the 2013 NCSI document

• Key actions going forward


Understanding the issues


NCSI Aims in 2008

• A document describing the vision of the care of people living with or

beyond cancer

• A supporting implementation plan

• A set of models of care which have been piloted and work

• 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

Charities

Cancer networks

Patients

Researchers

Community organisations

Primary care

Hospitals

A whole cancer community effort

What we now know

2 Million

4 Million

5 Million

3.2%


Cancer Survivors %

Sex

Male 800,00 40

Female 1,200,000 60

Age

0-17 16,000 0.8

18-64 774,000 38.7

65+ 1,210,000 60.5


Diagnosis & Treatment

Rehabilitation

Early monitoring

End of life care

Progressive illness

Newly

diagnosed

The first year

Up to 5 and

10 years

from

diagnosis

Incurable

disease but

not in last

year of life

End of life

care in last

year

The Survivorship Pathway

Later monitoring

Beyond 10

years from

diagnosis


Breast cancer

Colorectal cancer

Lung cancer

40

,00

0

28

,00

0

45

,00

0

51

,00

0

73

,00

0

24

,00

0

16

,00

0 (

11

,00

0)

41

,00

0

12

,00

0

9,0

00

21

,00

0

???

35

,00

0 (

28

,00

0 )

6,0

00

48

,00

0

44

,00

0

22

6,0

00

24

,00

0

12

,00

0 (

2,0

00

)

10

0,0

00

12

2,0

00

Rehabilitation Early monitoring:

2 ≥ 5 years

Early monitoring:

5 ≥ 10 years

Later monitoring

Progressive

illness

End of Life Care

(year 1)

Diagnosis &

Treatment

Total Prevalence - now

Total Prevalence - 2030

Diagnosis &

Treatment Rehabilitation Early

Monitoring

Later

Monitoring

Progressive

Illness

End of Life

Care

(Year 1

Deaths)


Median survival times


NCSI 2010 Vision Document


NCSI Vision (2010) ‘‍those‍ living‍ with ‍and ‍beyond‍ cancer‍ are‍ supported‍ to live as

healthy and active a life as possible ‍for‍ as‍ long‍ as‍ possible’

Five key shifts:

• Cultural – focus on recovery, health and well-being

• Holistic assessment – individual and personalised

• Self-management – not clinical follow-up

• Tailored support – risk assessment

• Patient Reported Outcome Measures (PROMS) – not clinical

activity

‘


National cancer experience survey 2010


Patient experience is poorer for rarer cancers

Breast cancer patients have the best experience

while sarcoma patients have the worst

Rank Tumour

1 Breast

2 Skin

3 Prostate

4 Lung

5 Colorectal / Lower Gastro

6 Head & Neck

7 Upper Gastro

8 Gynaecological

9 Haematological

10 Urological*

11 Brain / CNS

12 Other

13 Sarcoma


What can Cancer PROMs tell us?

Patient Reported Outcome Measures(PROMS) give us an

insight into:

• the quality of life for those living with and beyond cancer

from their experiences and point of view

• impact of cancer and the treatments on ability to lead

meaningful lives


How we did it

• 4,992 people identified

• 3,300 people responded - a 66% response rate

• Respondents from 4 tumour groups breast, prostate, colorectal

and NHL

• Identified from 3 cancer registries

• Different measures were used to identify Quality of Life issues

– One third scored a ‘high’ QOL

– Half scored ‘medium’ QOL

– Ten % scored ‘low’ QOL


What did we find out?

• Nearly half feared recurrence 1 year post diagnosis

• Almost a third were afraid of dying 1 year post diagnosis

• 38% of prostate cancer survivors reported urinary leakage and

58% reported impotence

• One in five colorectal survivors reported difficulty in bowel control

• Almost a third reported doing no physical activity

– only around a fifth did the recommended physical activity i.e. 30

mins x 5 x week

• Increased physical activity was associated with better QOL


Taking Action


Promoting recovery

Sustaining recovery

Managing consequences of treatment

Supporting people with active &

advanced disease

Supporting from the point of

diagnosis

The survivorship framework


Supporting from diagnosis

• Information

• Decision support

• Optimal treatment

• Holistic Needs Assessment

• Work and Finance


Promoting Recovery: The Recovery Package

1. Assessment and Care Planning


2. Treatment Summary


Cancer Care Review

• Post-treatment with GP -

assessment and care planning

• Financial impact of cancer

• Patient awareness of prescription

exemptions

• Possible late effects of cancer and

treatment

• Information needs in primary care


3. Health and Wellbeing Clinics


The Recovery Package

Assessment and Care Planning

Treatment Summary

and Cancer Care Review

The Recovery Package

Health and Wellbeing Clinic or

event


Meeting the needs of Londoners

• Survivorship a priority area for both ICSs.

• Pan London commissioning advisory group: • Integrated approach to survivorship

• targets to implement assessment and care planning,

treatment summary on three year basis.

• London wide standardised approach to Holistic

Needs Assessment and Care Planning.

• Plans to introduce stratified cancer pathways.

• London actively participated in piloting many

survivorship services.


Sustaining Recovery

•Breast 80% patients

•Colorectal 50% patients

•Testicular 95% patients

•Care Co-ordination

•Remote Surveillance


Supporting Self Management

Frontline staff can influence healthy behaviour change:

• Raise /prompt issues of lifestyle (physical activity, healthy

eating) with patients

• Prompt self monitoring of behaviours

• Prompt specific goal setting related to behaviours

• Refer to appropriate specialist (lifestyle change support)

services if required

‘


Supporting Self Management:

10 Top tips


Moving the 1.6m


Work and Cancer Work support is needed from point of diagnosis

HCPs have a key role to encourage patients to

think positively about work

Complex needs patients require specialist support

to return to work


Managing the Consequences of

Treatment ‘I know about potential problems, how to recognise them and get help, and professionals

understand there can be solutions.’

• Predict, Prevent and Manage

• Empower

• Chronic Disease management

• Specialist Referral


Macmillan Electronic Holistic

Needs Assessment


Consequences of Treatment: Matching services to the numbers at risk

Hundreds of

people

Severe, complex late effects

Tens of

thousands

Consequences ranging from mild to

severe

e.g. Bowel, urinary and sexual

problems

Hundreds of

thousands

Increased risk of future problems

e.g. CVD & osteoporosis


Supporting People with Active and

Advanced disease

• Data collection

• Discussion at MDT –

new diagnosis support

• Identify best practice

• Links to palliative care


Early palliative care

http://www.sciencebasedmedicine.org/wp-content/uploads/2012/01/NEJM-cover.png

http://www.sciencebasedmedicine.org/wp-content/uploads/2012/01/NEJM-cover.png


Secondary breast cancer care


Key messages

• A shift in professional culture is essential to enable supported self management.

• New models of cancer aftercare gives opportunities to improve quality and reduce cost.

• Many people can self manage their health with support, with

rapid access to professionals when needed.

• There is significant unmet need arising from consequences of treatment, which can be successfully addressed through prevention and treatment.

• Good survivorship care requires timely communication across boundaries.


Taking Action: the Priorities

Implementing the Recovery Package:

• Assessment and care planning

• Treatment Summary

• Health and Well being Clinics

• Cancer Care Review


Aligning with the NHS CB Domains


Aligning cancer with long term conditions


Taking Action: Engagement

Three key audiences:

• Providers

• People affected by cancer

• Commissioners


The financial case

Costs

• Assessment and

care planning

(£15-20m)

• Remote

monitoring

• Specialist

services for CoT

Savings

• Fewer outpatient

appointments

(£41.5m for

breast and

bowel)

• Fewer unplanned

admissions

• Better

management

CoT

• Fewer GP visits

Outcome pathways: doing things differently could save ££

£10K

£10K

£24K

£13K

£10K

£25K

£15K

£11K £20K

£12K

£9K £14K

£6K

£9K £9K

£1K

£8K

£20K

Ave

rage

In

pa

tie

nt C

ost P

er

Pa

tie

nt

£30K

£11K

£2K

£8K

£14K

£5K

£9K

£19K

£9K

Treatment Phase

Survivorship Phase

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)

Increasing length of survivorship

Note: To obtain spend per patient, HRG 4.0 codes were costed using the 2010/11 National Tariff; costs are inpatient only, excluding locally agreed costs (such as

chemotherapy), and priced at the spell, rather than episode, level (in line with how hospitals receive funding from their PCT)

Average Cost Across

All Pathways: £13,006


What does success look like? • Recovery package implemented

• Stratified pathways of care

• More patients being supported to self manage

• New services for managing consequences of treatment

• Better community assessment and management

• More patients making healthy lifestyle choices promoting

their health and well being

Most importantly outcomes for people living

with and beyond cancer will be improved


How can you make a difference?

• Read new NSCI document and discuss with others

• Use the Recovery Package resources on ncsi.org.uk:

– Treatment Summary

– Assessment and Care planning

– Health and Wellbeing Clinics

– Cancer Care Review

• Discuss introducing the Recovery Package at MDT/CCG

• Use the ‘10 top tips’ information booklet with patients

• Discuss physical activity with patients, and promote your

local Walking for Health schemes


NCSI: www.ncsi.org.uk

Macmillan: www.macmillan.org.uk

NSH Commissioning Board:

www.commissioningboard.nhs.uk/

NHS Improvement: www.improvement.nhs.uk

Find out more

stephen hindle survivorship programme lead · 2016-07-06 · national cancer survivorship...

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