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National Cancer Survivorship Initiative
June 2010
The number of cancer survivors is growing
 There are now 1.77 million people living in England having had
a diagnosis of cancer - over 2 million in the UK.
 Of the 2 million -1.24 million had their diagnosis more than 5
years ago.
 The number of survivors is growing by 3.2% a year. By 2030,
there will be over 3 million people in England living with or
beyond cancer.
Table 1: Estimated figures for 2010 and 2030
•
•
2010
2030
England
1.77 million
3.33 million
UK
2.13 million
4.0 million
Estimated figures for 2010 and 2030 calculated based upon a 3.2% annual increase in cancer prevalence in the UK, based upon
estimates for 2008 J Maddams, D Brewster, A Gavin, J Steward, J Elliott, M Utley & H Moller, Br J Cancer 2009 101:541-547
National Cancer Survivorship Initiative
Who are the two million cancer survivors? (2008, UK)
Sex / Site
Male
Female
Colorectal
Lung
Breast
Prostate
Other
Cancer survivors
%
819,188
1,183,328
40
60
235,816
63,522
548,998
253,436
900,744
12
3
28
12
45
Cancer prevalence in the United Kingdom: estimates for 2008 J Maddams et al Br J Cancer
2009 101: 541-547
National Cancer Survivorship Initiative
I survived my cancer, what happens to me now?
• Many people will live long and healthy lives following cancer.
• Some may have a range of significant physical, psychological
or social needs following cancer.
• People can be left with short or long-term consequences either
of the cancer itself or from treatments used to eradicate it.
• Others may live with chronic or incurable cancer for many
years.
National Cancer Survivorship Initiative
Cancer Survivors have a range of unmet needs
 A 2009 Picker survey of over 2,000 survivors found that:
43% wanted more information and advice, 75% did not have
or did not know if they had a care plan, and 75% did not know
who to contact for advice outside of office hours.
National Cancer Survivorship Initiative
Cancer Survivors have a range of unmet needs
• The Health and well-being profile of the cancer survivor
population (without active cancer) is comparable to people with
a chronic condition such as diabetes or arthritis. A Macmillan
survey in 2008 found that 90% of cancer survivors had visited a
GP in the last 12 months, compared to 68% of the wider
population
 Some of these health and wellbeing issues can be attributed to
the consequences of cancer treatment. Studies of patients after
pelvic radiotherapy suggest 50% of patients are left with bowel
problems affecting quality of life and 30% state that these bowel
problems have a moderate or severe impact. 60% of childhood
cancer survivors experience one or more late effects of
treatment 10 years following treatment.
National Cancer Survivorship Initiative
Current follow up arrangements are not meeting the
needs of survivors
 A recent study of over 1,000 patients at 66 UK centres found that 30% of
patients reported five moderate or severe unmet needs at the end of
treatment and for 60% of these patients, these needs had not improved 6
months after treatment (Armes et al, JCO, 2009)
 Current face-to-face out patient follow up is not meeting patients’ needs,
isn’t good value for money, and won’t cope with increasing numbers.
 Routine follow up appointments are not effective in terms of detection of
recurrence. In practice the large majority of recurrences are detected
either by patients themselves or on investigations which can be planned
without a patient having to attend a clinic.
 Models of aftercare support for the majority of cancer survivors are
generic with other long-term conditions. In some areas, specialist cancer
specific services and programmes are needed.
 The current model of follow up care for cancer survivors is unsustainable.
National Cancer Survivorship Initiative
National Cancer Survivorship Initiative
• The NCSI was announced in the Cancer Reform Strategy. Launched
in 2008. In July 2010 Ministers asked National Cancer Director,
Professor Sir Mike Richards, to lead a review of the CRS. The review
will be published at the end of 2010 and will set the future direction for
cancer services based on the ambition set out in the White Paper
Equity and excellence: Liberating the NHS
• The NCSI is led by the Department of Health and Macmillan Cancer
Support, supported by NHS Improvement.
• The aim of the NCSI is, by 2012, to have taken the necessary steps
to ensure that those living with and beyond cancer get the care and
support they need to lead as healthy and active a life as possible, for
as long as possible.
National Cancer Survivorship Initiative
National Cancer Survivorship Initiative Vision
National Cancer Survivorship Initiative
National Cancer Survivorship Initiative Vision
• The NCSI Vision Document (published 19 January 2010)
set out the initiative’s vision for improved cancer care:
People living with and beyond cancer have a personalised
assessment and care plan and are empowered to manage
their condition, based on their needs and preferences.
People are informed and prepared for the long-term effects
of living with and beyond cancer. Health and care services
are responsive to individual needs and ensure access to
specialist care when needed.
National Cancer Survivorship Initiative
To achieve that vision, the NCSI proposes 5 shifts
The NCSI Vision document set out five key shifts to improve care and
support :
• a cultural shift in the approach to care and support to a greater focus on
recovery, health and well-being after cancer treatment.
• a shift towards assessment, information provision and personalised care
planning.
• a shift towards support for self-management, based on needs and
preferences with appropriate assessment, support and treatment.
• a shift from a single model of clinical follow up to tailored support that
enables early recognition and preparation for the consequences of
treatment or signs of further disease.
• a shift towards measuring experience and outcomes for cancer survivors
through Patient Reported Outcome & Experience Measures.
National Cancer Survivorship Initiative
The NCSI is developing key messages and evidence
to support implementation of the five shifts
The NCSI is seeking to demonstrate that:
•
There are opportunities to improve quality and efficiency of services through investment
in new models of aftercare for cancer survivors
•
This requires commissioning risk stratified pathways of care rather than specific
activities. A risk-stratified approach will mean that 60–70% of cancer survivors can be
supported through supported self management rather than the current follow up model.
Models of aftercare support for the majority of cancer survivors in these groups are
similar to those used for other long-term conditions
•
Early experience suggests that 15-25% of survivors will still require regular face to face
monitoring or guided care. A small proportion of survivors (5 – 10%) currently have
unmet needs requiring new specialist services, for example for severe and complex
consequences of cancer treatment. Proportions will vary according to tumour type.
•
Assessment and care planning is key to providing appropriate support
•
Supported self management and physical activity interventions improve quality of life and
are cost effective. There is evidence to demonstrate enhanced motivation of cancer
survivors to health behavioural change following treatment. Where patients have the
appropriate preparation and routes back in to the system, self-management has been
well received by patients.
National Cancer Survivorship Initiative
Risk Stratification
A risk-stratified approach to managing those living following treatment for cancer
National Cancer Survivorship Initiative
Emerging evidence: Physical activity
Range of evidence of the benefits of physical activity for cancer survivors on
improving quality of life, reducing recurrence and mortality:
 More than 3 hours MET activity per week associated with decreased risk from
adverse breast cancer outcome. Specifically women with highest levels of activity up
to 50% risk reduction in mortality (Nurses Health Study, Holmes et al, JAMA, 2005)
 Functional and psychological benefit of a 12 week programme for breast cancer
patients (RCT, Campbell et al, BMJ 2007)
Emerging evidence of efficiency benefits for NHS:
 Reductions in admissions and GP visits associated with participation in an exercise
programme (RCT, Campbell et al, BMJ 2007)
 The Bournemouth After Cancer Survivorship Project (BACSUP) delivered an
individualised 3-month physical activity programme; Living Active & Well Programme,
to 200 cancer survivors (breast, colorectal and melanoma) following treatment. The
aim was to promote physical, psychological, social and spiritual health and wellbeing,
including strategies for living with and beyond cancer. Preliminary results using quality
of life tools suggest a trend towards improvement between pre and post intervention
scores.
National Cancer Survivorship Initiative
Emerging evidence: Test communities
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There has been much activity to test concepts and service redesign to gather the evidence to
create guidance for commissioners to inform planning for 2011/12
From September 2010 testing will focus on a small number of sites testing whole pathways of care
There are 27 adult and 9 children and young people test communities testing new models of care
and support, and assessment and care planning, supported by NHS Improvement.
These will demonstrate the potential to improve experience of care and quality of life through
assessment and care planning, and improved care and support for survivors of childhood and
adult cancer.
National Cancer Survivorship Initiative
Adult test communities: the improvement story so far
National Cancer Survivorship Initiative
Adult test communities: test site updates
NHS Birmingham East and North Health Economy: Bridges
•
•
The Bridges Support Service has been supporting people with cancer in other parts of the West
Midlands for over nine years. Bridges is a registered charity and for this pilot is funded by BEN
NHS and Macmillan Cancer Support. Bridges’ person centred approach, which includes
narrative based assessments means care and support is tailored to individual’s needs. The
service literally is a bridge to access services from health, social and community organisation
and where there are gaps Bridges will spot purchase services to provide appropriate support.
The service has been developed to support the forecasted number of 150 new people receiving
a breast cancer diagnosis at Good Hope Hospital and those people already being treated who
would need some kind of support from Bridges. It was anticipated that the greatest support
need would be transport to enable people to access hospital appointment and treatment. This
has been the case and most of the people who have been supported have required transport
with over 150 transport journeys provided for patients. Domestic care has been very much
appreciated to support people to maximise their quality of life and ensure they can remain at
home during treatment.
National Cancer Survivorship Initiative
Adult test communities: test site updates
Brighton and Sussex University Hospital NHS Trust:
Multi-disciplinary Combined Cancer Clinic for lung cancer patients
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A process mapping exercise led to a newly designed pathway incorporating a weekly
multidisciplinary Combined Cancer Clinic (CCC) within the Sussex Cancer Centre at BSUH,
where patients at any stage in their treatment pathway post-diagnosis have a holistic
assessment carried out. The clinic is more flexible to suit patients’ needs, allowing them to
trigger an appointment or cancel if not required and rebook for a later date. During the
consultation a Treatment Record Summary (TRS) is produced which is given to the patient and
their GP within 24hrs. The patient also has a detailed assessment and care plan (ACP)
completed by the specialist nurses. All documents are in a patient-held record.
Non elective emergencies appear to be reducing compared to previous years. Of those patients
admitted between February and May 2010 none were patients who had received care through
the new service suggesting that we are helping to avoid unscheduled admissions.
As a result of the setting of the clinic and the increased time allotted to each patient, we have
been able to carry out certain procedures in the cancer centre (e.g. pleural aspiration), thereby
avoiding need for emergency admission or re-attendance at a later date for an outpatient
procedure, all of which patients have found distressing. Staff and patients have given very
positive feedback. Further development of the CCC will see the inclusion of a dedicated
oncologist and a thoracic surgeon.
National Cancer Survivorship Initiative
Multi-disciplinary Combined Cancer Clinic for lung cancer
patients
A&E admissions relating to lung cancer
14
12
10
8
6
4
2
0
Jan
Feb
Mar
2008
National Cancer Survivorship Initiative
Apr
2009
2010
May
Jun
Adult test communities: an overview of testing
National Cancer Survivorship Initiative
Children & Young People test communities: update
National Cancer Survivorship Initiative
Children & Young People test communities: update
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17 sites now involved in CYP testing of ‘models of care’
Evaluation exercise is now underway (early information will be available in
September 2010)
Evidence and key principles will be presented at the CYP National Workshop
September 2010 to inform commissioners
Prototyping phase will start in early 2011
Headlines
CLIC Sargent Policy Review final report and recommendations expected July
2010
Outcomes from the 7-13 year old Consultation Exercise (March 2010) will be
taken into account in the evidence for September 2010
Sheffield – Texting Follow up Service has shown reduction in DNAs
Cambridge – exercise programme supporting patients during treatment shows
improvement in levels of fatigue
Details of ‘improvement stories’ can be found in March 2010 publication
Providing the Evidence and the updated version in September 2010.
National Cancer Survivorship Initiative
Next steps
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The work of building the evidence continues with the next key
activity being ‘prototyping’ of risk-stratified pathways of care, which
can demonstrate: increased numbers of patients with a care plan,
reduction in outpatient visits and reductions in avoidable A&E
attendances and admissions
The NCSI is establishing the cost to the NHS and patients of the
current follow up model. The NCSI are also seeking to analyse the
secondary and primary health care and social care costs following
cancer treatment. This will be contrasted with modelling the cost
benefits of the new models of care
Three main areas of potential efficiencies have been identified;
more effective planning resulting in fewer cancer bed days, a
reduction in ‘empty’ out patient appointments, and savings to the
wider economy, of people supported to return to work earlier.
National Cancer Survivorship Initiative
Pathway modelling
•
Based on a risk-stratified approach the NCSI proposes 3 pathway models for
supported self-management, planned coordinated care and complex care.
•
Between June and August 2010 the NCSI held a series of survivorship pathway
workshops to work through these proposed pathways looking at the 6 common
cancers
Specific issues addressed at the workshops include:
- Risk stratification and personalised assessment
- Setting and follow-up (community, hospital, integrated pathway)
- Rapid return/re-entry into appropriate parts of the health system
- Automated surveillance, PROMS and PREMS
- Rapid review MDT for recurrent/progressive disease
- Smooth and timely transition to end of life care
- Methodology for generating treatment summaries and care plans
- Implications to services of decreased follow-up appointments
- Education requirements for workforce
- Role of one-to-one worker
National Cancer Survivorship Initiative
Proposed pathway models of care
Supported Self
Management Pathway
E – Care Co-ordinator contact
H – Care Co-ordinator contact
J
Care Co-ordinator
contact
N – Care Co-ordinator
P – Care
Co-ordinator contact
contact
M
Pre Treatment
MDT
Treatment
A - Review with
C - Risk
Doctor
stratification
B - Care Plan
D - Treatment
Record Summary
Review
National Cancer Survivorship Initiative
F- Patient
Education and
prep
G – Review of
Care plan
I - Surveillance system
K
- Problems
and concerns
patient triggered
MDT
Review
L - Tests and
Review OPD
O. Refer to
Palliative Care
team
Proposed pathway models of care
Planned Coordinated
Care Pathway
E – Care Co-ordinator contact
H – Care Co-ordinator
contact
N – Care Co-ordinator contact – ongoing
P-
Care Co-ordinator
contact - palliative
survivorship
M
Pre Treatment
MDT
Treatment
A - Review with
Dr
B Care Plan
Discussion
C - Risk
stratification and
care plan
D - Treatment
Record Summary
National Cancer Survivorship Initiative
F – Patient
Education
G – Review of
Care plan
K- Problem and
concerns patient or
HCP triggered
MDT
Review
L - Tests and
Review
O - Refer to
Palliative Care
Team
Proposed pathway models of care
Complex Care
Pathway
H – Care Co-ordinator contact
E- Care Co-ordinator contact
P – Care
Co-ordinator
contact - palliative
N – Care Co-ordinator contact
M - MDT
PreTreatment
MDT
A – First
Treatment
Review
Specialty A
A - Review
G – Review
G – Review by
Specialty C
Specialty A
Specialty C
G – Review
G – Review
Specialty B
Care Plan
A - Review
B Care Plan
Specialty B
review
C - Risk
stratificationt
D - Treatment
Record
Summary
National Cancer Survivorship Initiative
K- Problems
and Concerns
Patient or HCP
triggered
Review
L - Tests and
Review
O - Refer to
Palliative Care
Team