Download Steve Hindle March 2010

Communicating the National
Cancer Survivorship Initiative
Vision
Stephen Hindle
1
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)
2
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)
3
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.
4
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 years
Little use of clinical risk stratification
No common assessment, often no written care plan,
patients have little choice or control
5. Patient Experience of Care Survey: Picker 2009
Many want more information on physical & emotional
aspects, diet and exercise at end of treatment
Majority didn’t know who to contact out of hours
Written up to date care plans not the norm.
The current system isn’t working for patients.
5
Why it’s got to shift – what people living
with and beyond cancer want
Five Key Shifts
1.
2.
3.
4.
5.
Cultural shift in approach, from focus on cancer as acute
illness to greater focus on recovery, health, and well-being
after treatment.
To assessment, information provision and personalised care
planning based on assessment of individual risks, needs,
preferences.
From clinically led approach to supported self management,
empowering taking of responsibility , supported by clinical
assessment.
To tailored support to enable early recognition of
consequences of treatment and signs & symptoms of further
disease, & personalised support for those with advanced
disease.
From emphasis on measuring clinical activity to measuring
experience and outcomes for cancer survivors through routine
use of PROMS.
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What’s got to shift:
Cultural shift
Shift 1
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
Shift from “Follow-up” to “Aftercare”
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%)
Level of need
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).
Shift to every patient having an assessment, information, and
a personalised care plan, so that their unique needs can be
met.
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
11
Health and Well Being Clinics
 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.
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Using self assessment tools to stimulate
better conversations …..
Significantly better discussions
between patients and both
doctors and nurses when person
affected by cancer has
completed an electronic self
assessment form
Velicova 2005
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.
14
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.
15
What’s got to shift :
Self management support:
Shift 3
“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”
16
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.
17
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
Shift 4
 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
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
22
Insight from combining data sources
GP research database
Radiation episode statistics
Cancer registry
Patient reported outcomes
Hospital episode statistics
Chemotherapy prescriptions
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
24
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.
25
What underpins the shifts (4):
User involvement
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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.
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?
Cancer survivors
%
Male
Female
800,000
1,200,000
40
60
0-17
18-64
65+
16,000
774,000
1,210,000
0.8
38.7
60.5
250,000
65,000
550,000
215,000
920,000
12
3
28
11
4629
Sex / Age / Site
Colorectal
Lung
Breast
Prostate
Other
National Cancer Survivorship Initiative
Survivorship Care and Support Pathway
Remains Well
Remission /
Follow up
Diagnosis
Primary
treatment
Survivorship
care plan –
living
document
setting out
aftercare
Remains
Late / Long
well
term effects
Recurrence
Advanced /
Active
Disease
2nd & Subsequent
Treatments
Crosscutting themes of work/education, finance, self
management, research, information, commissioning
EofLC