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Survivorship Strategy Living with and
beyond cancer
Anglia Cancer Network
Survivorship Strategy
Living with and beyond cancer
Supportive and Follow-Up Care
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1
Survivorship Strategy Living with and
beyond cancer
Anglia Cancer Network
Background
1.1 Definition and Overview
Today there are over two million people in England with a diagnosis of cancer; 1.24 million cancer
survivors had their diagnosis more than five years ago. Cancer prevalence is increasing with the
increase in age of the population, and the numbers of people surviving beyond one year is likely to
increase with the improvements being made in early diagnosis and treatment approaches. As a
result, it is estimated that there will be over four million people living with and beyond cancer in
England by 2030.
The Survivorship initiative is all about enabling those living with and beyond cancer to get the care
and support they need to lead as healthy and active a life as possible, for as long as possible.
This involves looking beyond the purely medical aspects of treatment follow-up, into more general
topics of health and wellbeing, and physical, psychological, social and economic issues that the
patient may face.
It should be noted that, whilst the benefits of this initiative are aimed at the period in a patient’s
journey following their first treatment, the changes in approach need to start from the point of first
diagnosis.
1.2 National Initiatives
The NCSI is working to demonstrate that through investment in new models of cancer care there
are opportunities to improve quality and efficiency of services as well as improving the patient’s
experience.
Adopting new cancer ‘aftercare’ models can free up outpatient appointments, reduce A&E
attendances and emergency re-admissions, and enable investment in specialist services for those
who need them.
New approach for survivorship support;
Every cancer patient to be offered –
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Holistic assessment
Personalised care plan and subsequent review
Treatment summary
Education opportunities
Risk stratified follow up pathway
Work is ongoing nationally to estimate the cost to patients of the current follow-up pathway, and
the cost to the NHS of the unplanned events associated with the current follow-up pathway.
A useful reference document that describes the NCSI Survivorship Initiative in detail is The
National Cancer Survivorship Initiative Vision, co-authored by Macmillan Cancer Support and the
Department of Health, published January 2010, Gateway Reference 12879.
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1.3 Local Context
Anglia Cancer Network is a geographically large network spanning six Primary care Trusts, ten
acute trusts and a number of specialist palliative care providers. The Network has an estimated
population of over 2.6 million (Office of National Statistics 2008). Recent data suggests that the
number of new cases of cancer (excluding non-melanoma skin cancers) diagnosed annually within
Anglia Cancer Network is approximately 13,500 (Cancer Information service data 2006). This
equates to an aged standardised incidence of 367 new cases per annum per 100,000 population.
Anglia Cancer Network has experienced a continued gradual increase in five year survival among
people diagnosed with cancer over the last twenty years. This changing picture in cancer survival
presents new challenges for professionals who will have an increasingly important role in
supporting people with cancer in living with the longer term impact of the disease.
The NCS initiative speaks about five cultural shifts and seven work streams to address the needs
of those living with and beyond cancer.
Care coordination across health and social care.
Care coordination is the joining up of services, coordination, information and communication
between care givers, treatment providers, those living with and beyond cancer and their families
that creates a seamless experience of care. It is key that this is built into current
oncology/haematology pathways.
There are models for care coordination in other policy areas and all of these refer to the
importance of assessment, care planning, care coordination, review and the importance of joint
working across health and social care.
Care coordination can be a complex issue due to the wide and varied systems that exist from Trust
to Trust to support transitions of care.
Establishing what these local systems are, building relationships and networks is crucial to
improving care coordination – not just within the NHS, but beyond to social care, charities,
community care providers and other agencies that meet the needs of individuals. This will help to
facilitate efficient transfers of care throughout the pathway.
National Context
Please find listed below links to National Initiative documentation:
www.dh.gov.uk/en/Publicationsandstatistics/.../DH_111230
http://www.macmillan.org.uk/Documents/GetInvolved/Campaigns/Campaigns/Two_million_reasons
.pdf
www.dh.gov.uk/en/Publicationsandstatistics/.../DH_131690
QIPP alignment
 Quality
 Empowering patients to self care to enable them to seek timely and appropriate support.
 Introduction of risk stratified pathways of care will result in more effective/efficient service
delivery; enhanced patient experience.
 Reducing the burden of frequent hospital appointments to patients.
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 Innovation
 A unique model of care which focuses on individual needs.
 Developing new ways of providing ongoing supportive care for cancer patients with
community and voluntary partners.
 Productivity
 Delivery of an effective pathway will result in a reduction in routine outpatient follow up
and emergency admissions; through better coordinated and informed care.
 Reducing the cost of follow up to the NHS.
 Reducing the number of hospital appointments that have no clinical value.
 Better utilisation of resources (staff, space, IT).
 Prevention
 Emphasis on secondary prevention, personalised and effective pathway that encourages
a healthy lifestyle.
 Preventing unnecessary hospital attendances.
 Addressing holistic and ongoing care needs of patients to prevent escalation of issues that
would require further intervention.
 e.g. advice on exercise or providing information on late effects of treatment.
Shifts
 A cultural shift, with a focus on recovery, health and wellbeing after cancer treatment
 A shift from a one-size-fits-all approach to follow up, to personalised care planning based
on assessment of individual risks, needs and preferences
 A shift from clinically-led follow up care to supported self-management
 A shift from a single model of clinical follow up to tailored support, enabling early
recognition of the consequences of treatment, and signs and symptoms of further disease
 A shift from an emphasis on measuring clinical activity to measuring patient-reported
outcomes
Work streams
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Assessment and care planning
Managing active and advanced disease
Late consequences of treatment
Self-care and self-management
Work and Finance; including vocational rehabilitation
Research
Workforce Development
In addition, there is an over-arching work stream looking at all the above for the Children and
Young People cancer patient community.
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Network Involvement
There is no reason why the Network Strategy should not be involved in all of the above. However,
some of the work streams (such as Work and Finance, and Research) are likely to be more
effective if driven nationally, with networks participating as appropriate and eventually taking on
board any resulting outcomes.
Therefore the Anglia Cancer Network Strategy will focus more on piloting and rolling out
approaches to assessment and care planning, managing active and advanced disease,
consequences of treatment, information provision, self-management and workforce development.
There will need to be a review of the training required to support implementation of the strategy.
Also a review of resources that exist across the Network. Where there are gaps, possible
alternative sources of support and opportunities for service development or re design.
At every stage of this project consideration should be given to the key role primary care colleagues
can play in the cancer survivor’s journey and experience.
Engaging primary care colleagues in the smooth transition at discharge, into community care and
supporting a shift in reliance for support from the hospital to primary care.
2
Network strategic aims for survivorship
2.1 Scope
See Appendix 1.
2.2 Key Indicators and milestones
This strategy underpins the following network strategic objectives:
Key Objective 3: To Help Patients Live With and After Cancer. Measures in support of this include:
 Number of patients with a ‘risk-stratified’ care plan, which has also been communicated to
their GP
 Patient satisfaction (indicators to be agreed, but likely to include information and
communication, GP follow-up and support, awareness of availability of 24/7 advice,
awareness of key worker support, self-administered care)
 Reductions in Emergency Admissions/telephone enquiries/out patient follow up
 Aspects of Community Services Support (e.g. availability of District Nurses, AHPs,
availability of Rehabilitation Equipment, voluntary sector support)
 Number of patients with end of treatment summary records
 Reductions in hospital follow-up appointments
 Note that National Cancer Patient Experience Survey 2010 questions 15, 16, 17, 18, 19,
25, 26, 27, 49, 50, 51, 52, 63, 64, 65, 66 could help to provide some measures here
This strategy also has a part to play in the Network’s Key Objective 8: To Influence the Effective
and Cost-Efficient Commissioning of Cancer Services. The measure in support of this would relate
to Cancer Spend and Cost per Head (reduction of).
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2.3 Network Model
Within the context of the current changes taking place within primary and secondary care the
Network model for survivorship support should be adopted and steps taken to implement the five
key objectives by March 2012.
Network approach to psychological support already in place.
Educational opportunities, Self-care/self-management:
Joint project with Macmillan Cancer Support under way, to audit reported patient experience and
benefit of survivorship courses – HOPE, New Perspectives, MI Wellbeing and the Moving On
course. Will report findings mid 2012.
Scoping exercise commenced across the network to establish availability of support and resources
for cancer survivors. As well as any gaps in service provision and resources/services.
Training available for Health Care Professionals
Psycho-sexual support for cancer patients – Gynae CNSs
Advanced Communication Skills training
Skills in psychological assessment – level 2
Practice Nurse Development Course – Holistic Assessment
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2.4 Implementation plan - Areas of Focus April 2011 – March 2013
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For each of the key objectives consideration should be given to ensuring equitable access for all
cancer patients regardless of socio economic status and ethnic background.
As well as long term sustainability, growth and development of services to meet patients needs.
Holistic assessment
All cancer patients should be offered an assessment at key points in their pathway – at diagnosis,
during treatment and at the end of treatment as a minimum. The aim of this assessment is to
identify any emotional, physical, social, spiritual and psychological needs at that time, for which
they would like support/advice/information.
Treatment summary
Part of the joint work done with NHSI and Macmillan focused on what information GPs said they
needed to enable them to effectively assess/review and support cancer patients following
treatment.
A succinct summary of the diagnosis, treatment, follow up and care delivered as well as possible
side effects and late effects. Contact names and numbers for effective enquiries, were what they
asked for. A treatment summary provides the GP with this information.
 Introduce a treatment summary record across the network so that all cancer patients have
a summary sent to their GP, after completing treatment. (Individual depts. may send
treatment summaries following the completion of specific treatments i.e. surgery,
chemotherapy, radiotherapy)
An overall treatment summary would still be required at the completion of their pathway.
For those patients where future treatment is likely, the summary is still relevant to inform the GP of
the treatment delivered, follow up plan and their involvement in future care.
Care plan
All cancer patients should have a care plan, which includes information about their diagnosis,
treatment and follow up care. Possible side effects/late effects of treatment, contact
names/numbers for support/advice/information. Key issues or concerns the individual may have
and advice/support given. Goals/hopes for the future as part of their individual self-management
plan.
(Some areas may choose to adopt individual documents for the treatment summary and care plan.
Or use a combined one) See Appendix for Network Example.
Risk stratified follow up pathways
Current follow up pathways in many areas have been shown to be ineffective in meeting the
patients needs, vary widely across teams and are not cost effective or sustainable in the long term.
 The Network along with Site Specific Groups, need to explore opportunities to review and
re design traditional follow up pathways to effectively meet patient’s needs and free up
valuable resources for reinvestment
 It is proposed that with the key supportive elements in place and defined criteria for
referral, based on the individual patient and their diagnosis. The individual could be put
into one of two follow up pathways:
Supported self management
Complex care
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 Demonstrate potential savings for reinvestment in specific disease sites across the
network if these changes are implemented
 Areas for reinvestment may include –
 CNS/Key worker follow-up/review
 Education programme/information day
 Support services i.e. counselling, psychologist, complimentary therapies.
Education and support opportunities
In order for patients to feel knowledgeable and confident about managing their condition long term
they need to have had the opportunity to access timely and relevant information and support.
There are a number of educational opportunities available for patients to access across the
network, but some areas may wish to develop their own
See Appendix 2
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3
To ensure all within the Network are aware of the educational opportunities available
Support the introduction of education days/programmes
Exercise referral schemes
Occupational/rehabilitation activities available
Delivering the Strategy
3.1 Outline Implementation Plan
The implementation plan will follow once the strategy has been accepted by the Network board.
3.2 Service User Engagement
CSUG involvement to promote/develop key aspects of the model.
Audit documentation and education programmes to gauge effectiveness and shape development.
3.3 Coordination of Activities and Information
The following groups have been set up to lead and support the strategy and to work in partnership
to implement the key enablers.
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Stakeholder Group
Steering Group
Patient Information Project
Rehabilitation steering group
Website
Investment in Education and Learning
Provide support/advice and training where appropriate to implement use of psychological
assessment tools, treatment summary and care plan.
Provide support and guidance in accessing/implementing education and self-management
programmes to support cancer survivors.
4
Governance and Monitoring
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The project will be overseen by a stakeholder Steering Group accountable to the Transforming
Cancer Care Group and subsequently the Network Board.
5
Equality and Diversity Statement
This document complies with the Suffolk PCT Equality and Diversity statement – an EqIA
assessment is available on request to Anglia Cancer Network PQ Manager, Gibson Centre, Exning
Road, Newmarket, CB8 7JG.
Disclaimer
It is your responsibility to check against the electronic library that this printed out copy is the most
recent issue of this document.
Please notify any changes required to the Anglia Cancer Network PQ Manager
Document management
Document ratification and history
Approved by:
AngCN Nurse Director
Date approved: Aug 2012
Review period:
Authors:
2 years
Survivorship Lead,
AngCN; Project
Manager Survivorship
AngCN
Version number as approved and
2
published:
Date placed on electronic
library:
August 2012
Document Owner:
Anglia Cancer Network
Unique identifier no.:
AngCN-CCG-PSS1
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Appendix 1
Survivorship Programme Framework Version 3
AngCN Initiatives
Considerations To Include In Each Workstream
Cultural Shift - focus on recovery and wellbeing
Shifts
Assessment & Care
Planning
Self-Management
Tailored Support
following Treatment
NCSI Workstreams
End of Treatment Record
(IHT)
Over-Arching
Workstream Children &
Young People
Patient
Information
Psychology assessment
and counselling (CUHFT)
Assessment, Information &
Care Planning
Assessment of efficacy of
Oncolodge IT database
for TYAs (CUHFT/ Leeds)
Managing Active & Advanced
Disease
Exercise Programme
(CUHFT)
Impact on Fertility for
CYP (CUHFT)
Consequences of Treatment
Managing Chronic
Fatigue (CUHFT)
Self-Care and SelfManagement
Pilots of
Macmillan SelfManagement
Courses (AngCN)
Moving On Programme
(IHT)
Website for CYP
patients and
families/ carers
(CUHFT)
Work & Finance/ Vocational
Rehabilitation
Research
Workforce Development
Evaluation Shift - Patient Reported Outcome Measures
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Commissioning
Workforce
Development
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Appendix 2
MACMILLAN SUPPORTED SELF MANAGEMENT INTERVENTIONS PILOTS FOR AngCN
SUMMARY December 2010
New Perspectives
This is a six-week small group course led by people who have had cancer. It is a version of the
Expert Patient Programme, licensed by Stanford University in the USA. The content, which was
adapted to better reflect the needs of people living with cancer, focuses on problem-solving and
action planning to promote a healthy lifestyle, such as healthy eating and managing fatigue as well
as addressing issues such as dealing with uncertainty and decision making. The generic version
of this course had been run as “Living with Cancer” until 2009. It is well evaluated by patients but
reaches only a small number of people. It has run several times a year for several years in
Cambridge and Mount Vernon. There are plans to run four programmes in 2010/early 2011 in
Cambridge and one in Huntingdon. One of the programmes in Cambridge and the one in
Huntingdon will form part of the AngCN pilot study.
HOPE (Help to Overcome Problems Effectively)
This small group course follows a similar structure as the New Perspectives, however on this
course; the emphasis is more on facilitating the use of participants’ own personal resources and
focusing on finding solutions than problem deconstruction. The course can be facilitated by people
who have had cancer or by professionals and utilises a taster session for prospective participants
to determine the final content of the course. The piloting of this course has recently completed with
significant positive evaluation. Macmillan is looking to roll out the course nationally with interested
organisations. A carer-specific version and a version for the South Asian community are in
development with piloting of these courses due to take place later this year, again with a view of
national roll-out dependent on positive evaluation of effectiveness. Two pilots are taking place in
2011 in Anglia, with facilitator training to be run in advance.
Mi Wellbeing
A new partnership for Macmillan, just developing an on-line cancer specific programme now, ready
to pilot from early December. This pilot will be available to all patients across AngCN.
Self Management Toolkit
This is a selection of activities (modified from self management workshops currently offered) that
can be used by self help and support groups to help manage day-to-day life living with cancer.
The activities are facilitated by a volunteer from the group who has undergone training from
Macmillan. Volunteer facilitators trained in 2009 are using the draft toolkit at present. A modified
version of the toolkit has been developed for use within Macmillan’s Health and Wellbeing Clinic
project scheme.
The toolkit will be piloted in AngCN with three or four interested patient support groups.
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Moving On
This is a four-week course run monthly for up to ten patients and carers, facilitated by a nurse
specialist at Ipswich Hospital. The course covers a wide range of topics including diet and
exercise, managing symptoms, anxieties and fears, psychosexual effects of cancer, relationships,
and resources to support recovery.
The programme encourages patients to share their experiences and to explore ways of
overcoming or adapting to the changes.
The aim of the programme is to support patients and carers to feel confident and have the
knowledge and appropriate skills/resources to manage their condition. Goal setting and selfmanagement are key objectives.
This is an established programme and will run every month during 2011, except for April
and August. It is open to anyone affected by cancer (at least 6/52 post completion of
treatment)
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Appendix 3
INSERT TRUST LOGO
TREATMENT SUMMARY and CANCER CARE PLAN
This care plan summarises information about my diagnosis, management, actions to resolve any
current concerns, follow up plan, symptoms to look out for, and steps I need to take to stay healthy.
My Contact Information
Name:
Telephone Number:
Mobile Number:
Address:
Main Carer:
Relationship:
Age:
NHS Number:
Telephone Number:
GP:
Hospital Consultant:
GP telephone number:
My Care Planning Session
Date:
Duration:
Completed with:
Name:
Role:
Contact number:
Outcome:
My Cancer
Cancer diagnosis:
Date of diagnosis:
Brief management history: (e.g. surgery, chemotherapy, radiotherapy, hormone
treatment, surveillance, watchful waiting)
Significant events during treatment: (side effects, weight loss/gain)
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Research/clinical trials:
Information Prescription
Information Prescription offered/dispensed:
Record of Information given:
Unique Identifier:
Actions required by GP
GP Cancer Care Review
Date
Ongoing medication for GP to review/dispense:
Osteoporosis and Cardiac screening:
Holistic Assessment
Date of assessment:
** INSERT TRUST HOLISTIC ASSESSMENT TOOL **
My Assessment
During my assessment I identified the following key concerns where further help and
support is required or requested
1.
Action agreed:
2.
Action agreed:
3.
Action agreed:
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Summary of my goals:
My follow up plan (example)
Follow up
Year 1
recommendations
Hospital or GP
appointment or
telephone clinic
Year 2
Year 3
Year 4
Year 5
Scans/
investigations/
blood test
Test Results Log:
Date:
Management:
Blood test result
Other tests
Lifestyle advice and self management programme
Smoking cessation
Diet and weight management
Exercise and managing fatigue
Holidays and insurance
Complementary therapies
Managing anxiety and stress
Relationships and sexuality
Treatment side effects/late effects and what to do about them
Side effects/Late effects
What to do
1.
2.
3.
1.
2.
3.
Signs and symptoms to look out for and seek advice on
Signs and symptoms
Contact:
1.
2.
3.
4.
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Key Contacts
i.e. - Hospital switchboard:
Information centre:
Day unit:
Ward:
Hospital Key Worker:
Name:
Role:
Contact details:
Contact for:
Blood test and scan results:
From Consultant in clinic or GP team depending on who requested the test
Appointment enquiries:
Who to contact for what:
Useful organisations:
If you have any other concerns please do not hesitate to contact your Nurse Specialist/Key
Worker, information centre, GP.
Next Steps
i.e.
Date of next review (if required)
My Second Care Plan Review
Date:
Duration:
Completed by:
Outcome of this meeting:
Contact number:
Reason for care plan review:
My Second Assessment
In your assessment I have identified the following key concerns where further help and
support is required or requested.
1.
Action agreed:
2.
Action agreed:
3.
Action agreed:
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Summary of goals:
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