Noёline Young
Project Manager
National Cancer Survivorship Initiative
From Cancer Plan to Cancer Reform
• The Cancer Plan recognised that each year
200,000 people in England were diagnosed
with cancer
• Cancer is therefore one of the biggest causes
of death in the country.
• The Cancer Reform Strategy (2007) defined
further plans for improving NHS cancer care
• A key recommendation was to create the
“National Cancer Survivorship Initiative” (NCSI)
with the aim of ”improving the services and
support available for cancer survivors”.
• Two Million Reasons (2008) 2 million survivors
of cancer in the UK (1.6 million people in
England)
• 1 in 10 people over the age of 65 living with
the disease.
• The National Cancer Survivorship Initiative
(NCSI) was established 2008 to consider a
range of approaches to survivorship care,
tailored to meet individual patient’s needs
• There were 7 workstreams including
Assessment and Care Planning
The Assessment, Care Planning (ACP) and
immediate post treatment workstream
Four defined areas (subgroups) of work:
»Assessment and Care Planning
»Treatment Record Summary
»Cancer Care Review
»Immediate Post Treatment
Why Assess Patients Needs?
“I feel like my whole life has been
thrown up into the air,
chopped in a million pieces
and is now on the floor in front of me.
How do I make sense of this?
Where do I start?”
in Jane Rankin (2008)
Why Assess Patients Needs?
• Patients have reported that current routine follow-up
appointments do not not meet their needs
• Evidence suggests psychological, social, spiritual,
financial and information needs that cancer survivors
may have following their treatment are not meet by
routine follow-up
Routine follow up appointments are not
effective in terms of detection of recurrence.
The majority of recurrences are detected
either by patients themselves or on
investigations which can be planned without
a patient having to attend a clinic.
Resources are being wasted by providing
services that are not fit for purpose
Assessing and Care Planning with your
patients will mean that their needs are
addressed and resources are used
appropriately
Thomas Jefferson 1743-1826
“It is a capital mistake to
theorise before
one has the data”
Timeline for The National Cancer Survivorship Initiative
2009
Development
2010
Testing
Emerging vision of care NCSI Vision document
from NCSI
Published - 5 key
workstreams
shifts
2011
Implementation
Implementation of
tested models of care
Piloting Models of
Care and support
Ongoing improvement
of care and support for
cancer survivors
Gathering Evidence of
benefits of new
models of care
Establishment of long
term survivorship
research programme
Preparing principles of
improved models of
support for
commissioners
Testing & Evaluating
• Assessment and Care Planning
• Cancer Care Review
• Treatment Record Summary
• Immediate Post Treatment
Adult Test Communities
Phase 1 – 15 sites
(2 in Wales)
• Models of Care
Phase 2 – 11 sites
• Assessment and
care planning
• Treatment Record
Summary
Tested Models
ACP & TRS testing sites
System Enablers
Customer Relationship Management
System
- Bristol
Patient information development sites:
-Hillingdon
-Christie
-Hull
-Mount Vernon
Survivorship Living
Well Courses
Bristol
Mount Vernon
Hereford
Ipswich
Guys
South of Tyne & Wear
Clatterbridge
Birmingham
Risk stratification:
-Taunton
Community Support
Gloucester: Village Agents
Medway
Birmingham
Exercise /
Rehabilitation
Sheffield
Bournemouth
Marie Curie Hospice
Telephone
Management
Guys
Birmingham
Worcester
Velindre Cancer Centre: Herceptin
pathway
Workforce
Development
Sheffield (HNA)
Luton (oncology awareness)
Mount Vernon (E learning re Benefits)
Velindre Cancer Centre: Breathlessness
pathway professional education package
Primary care led
services
Luton
Birmingham
Education Day/Session
Bristol
Worcester
Sheffield
Christie (user engagement)
Velindre Cancer Centre (Breathlessness
pathway; self management
ACP Tools in Use
•
•
•
•
•
ACP Framework self assessment tool
Distress Thermometer*
SPARC
PEPSI COLA aide memoir
Locally developed HNA tools
Care Plans
- As part of assessment tool
- Locally developed
- Electronic versions
Success Factors
• Clinical Support
• Focus on quality
• Protected time to review systems and
practice
• Multi disciplinary approach
• Patient involvement
• Good baseline data – national and local
• Sharing good practice
• Enthusiasm for change
Learning so far
• ACP post treatment is a key enabler for
supported self management
• Positive benefits – patients, staff
• Assessment tools – simple, flexible,
• Care plans
• CNS resources – time, space, training
• Identifying patients at the right point in
journey
• Treatment Record Summaries
Next steps
• ‘The Improvement Story so Far’ document
– July 2010
• Economic Evaluation – pattern and cost of
follow up
• Proposed ‘pathways of care’ for
commissioning – Autumn 2010
• Picker and Tribal evaluation reports –
Sept/Oct 2010
• End of pilot stage report – Jan 2011
The Future
• Competency training what is available and
what can be delivered in 2011?
• The use of electronic solutions
• Management systems
• Directory of Care
• Patient Information
• Exercise programmes
• Education events
Useful Links for further Information
www.nsci.org.uk
www.improvement.nhs.uk/cancer
www.dh.gov.uk