Transcript Slide 1

National Cancer Survivorship Initiative
Central Hall, Westminster
Monday 21 September 2009
Overview of test communities
National Cancer Survivorship Initiative
NHS Improvement Adult Living
with and Beyond Cancer Workstream
Gilmour Frew
Director NHS Improvement
NHS Improvement Adult Living
with and Beyond Cancer
Workstream
Work in Progress
• Picker Experience of Care Baseline Survey
• Review of Follow-up / Survivorship Services
Practice in England for 3 tumour types
• Testing new models of care for those living
with and beyond cancer
Challenges to address
• Areas of innovations, but no whole system approach
• Models of delivery are professionally led therefore along
way from survivor led or self care
• Culture of traditional follow up over 5-10 years a long way
from new stratified models of care
• Downstream impact of today's service not seen in relation
to hospital attendances nor emergencies; the current service
works in splendid isolation
• Gap between strategic vision and reality on ground is huge
Testing Models of Care
• Three presentations from Test Communities
• Key themes:
– Need to shift from disease and illness to health and
wellbeing where appropriate
– Look across the whole pathway of care and support
from prevention to end of life care
– One size does not fit all
– You need to test approaches and models of care and not
assume that fixing part of a system will resolve root
cause problems
National Cancer Survivorship Initiative
Overview of test communities
Surviving Cancer-Living life
Jannike Nordlund
Project Manager, Guy’s and St Thomas’ NHS Foundation Trust
Introduction – what initiated the project?
• Pfizer Health Solutions
- Expertise in management of long term conditions
• Guy’s and St Thomas’ - expertise in oncology and willingness
to invest in innovation
• Kings College London evaluation
• From thought to reality in 8 months
• 15 months on – 380 patients enrolled
SURVIVORSHIP
Chemotherapy
Surviving Cancer Living Life
Ca
Radiotherapy +/-
En
do
fL
ife
Assessment and
Multi-disciplinary
Team Review
re
n
tio
ua
ad
Gr
Surgery +/Prevention
Screening
Presentation
Diagnosis
What is the success of the project?
Summary findings of qualitative evaluation
Interviews with 22 patients:
 Service perception
 Answered deep felt need
 Right approach at the right time
 Telephone support
 First point of contact for health issues
 Different to contact with GP and CNS
What are the leanings?
•
Extensive engagement and involvement
with clinical teams to ensure harmonisation
•
Ensure a clear understanding of all elements of follow up care
that is already offered prior to project set up - avoid
duplication.
•
Funding – SCLL needs to be part of overall follow up pathway,
will not be separately funded.
•
Telephone support – not the only solution,
one model doesn’t fit all.
National Cancer Survivorship Initiative
Overview of test communities
Finding a way in survivorship: The Birmingham Experience
Bernie County
Service Improvement Lead, Pan Birmingham Cancer Network
NCSI Adult Survivorship
Workstreams

Immediate and Post Treatment
&
 Self Management
Test community partners
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NHS Birmingham East and North
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Heart of England Foundation Trust
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BEN provider arm
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Pfizer Health Solutions
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Macmillan
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Pan Birmingham Cancer Network
Why and How?
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Inpatients test site
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Focus groups (Apr and July 08)
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Great service
But
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A sense of isolation post treatment
And
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Patients expectations of follow-up
are different to clinicians
Also

Patients self limit themselves
Acute treatment phase
Supportive selfmanagement
EOL
Hospital professionals
eg consultant, CNS
Telephone support
Community Cancer Nurse
GP
Patient choice
Self-management education
Services eg psycho-oncology
Bridges
Support groups
Family/friends
Information, co-ordination, communication,
Proposed testing at GHH

Telecare
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Self Management
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Assertive case management
Reduction in hospital based follow-up
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Post treatment group
Network top tips document
Care Management
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Holistic Needs Assessment
Demand and capacity for psycho-oncology
Fail safe systems for recall for diagnostic tests
Transfer of Care Document
Bridges
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Integration of social care
Focus Group
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March 09
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Positive feedback on suggestions
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Some reservations about reducing
hospital based follow-up
Key
Breast Cancer Pathway
Areas of testing
Family
History Clinic
Other (A&E
Self referral
GP
Recurrence
Triple
Assessment
Diagnosis
MDT
BRIDGES
Chemo
Therapy
Radio
Therapy
Hormone
Therapy
Other
Chemo
Therapy
HOPE
ADP
Other
Surgery
Hormone
Therapy
MDT
Hospital
Follow Up
Macmillan
Supportive Self
Care
Radio
Therapy
Post
Treatment
Group
PHS Telecare
Sept 09 Hospital Follow
Up for 3 years Maximum
Except Trials Patients
Hospital Follow Up 6/12 – 1 year
For 5 years + /or 10 years if trials patients
PSYCHOLOGY
ACM
Adjuvant Treatment
Neo Adjuvant
Treatment
Plan
Challenges

Complex

Low starting point

Four/five projects in one
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Different agendas/priorities
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Moving the focus of care
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Recognising the stages in early survivorship
Opportunities

Different starting points/dates
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Clearer evaluation
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Four cohorts
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Hope course 1&2
Hope course plus telecare
Telecare
Bridges and ACM are needs based as so will
be provided to those that require them
Does this fit QIPP?
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Quality
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Innovation
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Transferring from long term conditions to cancer – seeing the
whole person
Shifting care to appropriate setting
Productivity
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“This is all about quality” Andrew Donald (Chief Operating Officer NHS BEN)
Removal of variation in current follow-up pathway already
achieved
Top tips booklet in circulation
Releasing capacity in secondary care
Prevention

Earlier interventions – better results?
Next steps – the foundations
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Recruiting to November Hope course
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Identifying clinicians for January advanced
development course
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Recruiting care managers for Telecare
launch February
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Finalising contract for Bridges
National Cancer Survivorship Initiative
Overview of test communities
A Health and Lifestyle Coaching Programme
Following Cancer Treatment
Karen Roberts, Nurse Consultant
Sarah Rushbrooke, Cancer Nursing Modernisation Manager,
North of England Cancer Network
South of Tyne & Wear
Pilot Project Aims

To understand more fully survivorship needs of people following
a cancer diagnosis, and in particular, it's relationship to gender,
age, health status and a social model of illness.
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To develop a supportive care programme for people who have
had cancer to help them adapt and cope with life after treatment using a coaching / cognitive behavioural therapy approach.
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To evaluate the pilot implementation of this programme on the
adaptation and well-being of cancer survivors.

To assess the acceptability of early discharge from secondary
care cancer follow-up from users perspective and replacement
with a self-care management model.
Objectives
To determine if during the transition from
cancer patient to cancer survivor, whether a
health and lifestyle coaching programme can:

Reduce anxiety in the post-treatment phase

By focusing on health not illness, motivate people to change
and improve their health in the future
e.g.. stop smoking, lose weight etc

Help patients become ‘people’ again, and
facilitate this transition from cancer patient to
whom they were prior to their illness
Deliverables & Management of the Project

Development of Steering Group
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Terms of Reference
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Establish role & responsibilities
for 3 arms of the project
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Secure funding & appropriate allocation of funds
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NCSI monthly update via NHS Improvement
Programme Delivery
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2 Health & Lifestyle Coaching Programmes
will be delivered weekly over 8 weeks.
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There will be places for a maximum of 10 people,
men and women, who have completed cancer
treatment within the last three to six months.
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Recruitment of programme participants will come
from a referral from the key worker and the first
programme commenced on 10th September 2009
Location
The location of the Health & Lifestyle
Coaching Programme will be within the
community and outside of ‘health’ premises,
for example within a village hall, library or
community centre. This will support the
programme philosophy regarding adaptation
and not being labelled as ‘ill’ or
‘a cancer patient’.
Bensham Grove Community Centre
Where, when and who of survivorship care?
Cancer Unit
Primary care
Cancer Centre
Patient
What do people want after cancer treatment?

2007 Focus group work (n=18) to ask people
what did they need during recovery
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Information needs changed from ‘illness’ to ‘wellness’.
Identity – not a ‘cancer patient’ or even a ‘survivor’
but being ME.
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Coping with anxiety about health.
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Understanding emotional impact and how it made them feel
(which affected others around them).
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Help to adapt to the changes in their lives and being able
to plan for the future.
Shaping the future

Identity – who am I now? Self-narrative

Past, present and future are inextricably liked (and
affect how individuals view and react to illness)
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The pain of uncertainty (and an uncertain future)
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Managing risk (recurrence, rejection, social )
Different perspectives
-- patient
-- her partner
-- the professionals
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Health and Lifestyle Coaching
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A coming together of coaching and CBT using the
current evidence base and models for practice.
(NOT therapy)
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A focus on wellbeing not illness or symptoms.
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A partnership between cancer and
mental health services.
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Creating a learning community.
A skills based programme.
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Building strength and resilience
– it can be learned with practice.
Personal resilience escalator model
(Rao, 2009)
Thrive
Skillful actions
Adaptive beliefs
and strengths
Values focus
Escalating resilience
Personal meaning
Surviving negative
emotions
Adversity
Getting through skills
Future oriented skills
Evaluation - the more we look….
the more we find