This document highlights the work being led by NHS Improvement to support the delivery of the National Cancer Survivorship Initiative (NCSI) vision for those living with and beyond cancer. This survivorship agenda is a priority which was outlined in the Cancer Reforms Strategy (2007) and Improving Outcomes: A Strategy For Cancer (2011)
(Published May 2011)
1. NHS
CANCER
NHS Improvement
Cancer
DIAGNOSTICS
HEART
LUNG NHS Improvement - Cancer
Effective follow up: Testing
STROKE
risk stratified pathways
May 2011
2. Complete care pathway for a patient with a diagnosis of cancer
Remission
Inpatients Remains
Symptoms Well
Screening Consequences
Ambulatory
Care of Treatment
MDT
Survivorship
Straight Decision Assessment Recurrence
Investigations to Test to Treat Care Plan
Primary
Care
Assessment Primary (Living
Referral Diagnosis document End of Life
Treatment setting out Care
aftercare)
Primary
Care
National Awareness and Early
Diagnosis Initiative (NAEDI)
Inpatients Patient Chooses Active/Advanced
Not to be Treated Disease
Survivorship - Living with
and Beyond Cancer
3. Introduction 3
Effective follow up: Testing risk stratified pathways
Introduction
The purpose of this document is to
highlight the work being led by
NHS Improvement to support
delivery of the National Cancer
Survivorship Initiative (NCSI) Vision1
for those living with and beyond
cancer. This survivorship agenda is a
priority which was outlined in the
Cancer Reform Strategy2 (2007)
and Improving Outcomes; a
Strategy for Cancer3 (2011).
As part of the NCSI, NHS
Adam Glaser, Clinical Director, Gilmour Frew, Director - NHS
Improvement is working in
National Cancer Survivorship Improvement
partnership with patients, clinical Initiative
teams, Department of Health and
voluntary agencies to improve the
effectiveness and quality of service
Key emerging principles
delivery for those living with and
beyond cancer. A key aspect of this
is ensuring effective pathway • Risk stratified pathways for future care and
support for those
management across organisational of care based on the tumour
boundaries, with the patient at the type, treatment and personal
heart of the decision making circumstances of the individual
living with and beyond
• All patients will be offered
cancer:
process.
a personalised care plan
Traditionally, the focus of cancer that focuses on their individual
service improvement has been on needs along with a treatment
summary for the patient and
the referral to treatment pathway,
those involved in their care
with the emphasis post treatment
• Information and education
on surveillance and monitoring for
that enables choice and
further disease. Primary care has, in confidence to self manage will be provided at the right time to
the past, seen the management of meet the patient’s individual needs
cancer patients to be the province • Remote monitoring which provides safe and effective monitoring
of the specialist cancer team until at a distance with timely intervention if required
they have been discharged to the • Care coordination as a function that ensures that the needs of the
care of their GP. individual are met seamlessly across organisational and clinical
service boundaries. All patients will have appropriate timely
There are estimated to be around access to the right service, first time, when problems arise
1.7 million (2008) people in • The patient is the only constant through their journey of care.
England living following a diagnosis A hand held record could enhance communication across
of cancer, with this number rising providers of care or in an emergency.
around 3.2% per annum.
www.improvement.nhs.uk/cancer/survivorship
4. 4 Introduction
As the incidence and prevalence • In 2007, a survey of 3,000 • In March 2008, a meeting of
continues to rise, the current patients and professionals nearly 200 patients in
traditional approach to managing involved in providing cancer care partnership with Macmillan
patients is: in hospital and primary care was Cancer Support6 was held to
• Not always meeting the undertaken. The purpose of the explore follow up options for the
individual’s needs survey was to identify future. The conclusion at the end
• Based on a medical (illness) perceptions and preferences for of the day was that patients
model rather than a self follow up care. There was were not adverse to alternative
management (wellness) model4 consensus as to why follow up approaches to follow up so long
happens, though there were as they have:
To get to where we are today we differences in the relative • Good quality, pertinent
have undertaken scoping work to importance of the responses. information
inform us about perceptions, With regard to preferences, • Rapid access to specialist care
preferences and models of current patients preferred what they as needed
care delivery across England: have experienced5. • A care plan which is agreed by
all those providing care and is
owned by them.
A PATIENT’S VIEW
Huge advances have been made in cancer treatment over past years, and
survivorship rates are increasing all the time. However, a by-product of this
success is that cancer patients typically need supporting for many years
beyond the end of their primary treatment. The care planning needs
include not only monitoring for possible recurrence of the original illness
but also a whole range of unrelated conditions that can arise because of
the long term effects of the original cancer treatment. Patients may go for
many years leading normal lives, requiring only occasional surveillance, but
if more serious medical issues do arise it is very important that they can
easily access the specialist medical attention they need. Clear and flexible
recording of medical history has an important role to play here. If patients
are in a different part of the country from the location of their initial cancer
treatment, or if they need to see specialists in a different medical area Michael Prior, Cancer Patient
because of the late effects of treatment, the doctors and nurses need easy
access to the patient's medical history so that they can readily understand
the context of new symptoms or conditions.
The NHS Cancer Improvement Programme seeks to address all these issues. As a patient who has lived
with the effects of cancer over many years, I am hugely encouraged to see the progress being made.
I am also very pleased to have the chance to contribute as a patient representative, and work with the
excellent team of professionals taking the work forward under Gilmour Frew's leadership.
5. Introduction 5
• During summer 2009, a rapid A UNIQUE PERSPECTIVE...
review of follow up7 care and
support was undertaken across Many of you will know me from my
England using a questionnaire work as a project manager for the
for clinical teams across three National Cancer Survivorship
tumour types; breast, colorectal Initiative (NCSI), however, what you
and prostate. The findings of the may not know is that I am a survivor
review showed a predominantly of ovarian cancer (10 years now). I
medical model of follow up care have also been a carer for my
with 'one size fits all' the norm. daughter who was diagnosed with
For many patients follow up care ovarian cancer nearly 11 years ago
was managed by clinical nurse (at the age of 19) and who is also a
specialists through consultant survivor and now a very active and
protocols. There were pockets of busy young lady. An unbelievable
innovative practice where coincidence but even more so Noëline Young, Project
individuals were self managing because I was the gynae-oncology
Manager – NCSI
with open access if required. specialist nurse in the team that
• Over a period of 15 months in treated my daughter. This unique situation has given me a
2009/10, 28 pilot sites across different perspective on cancer and the impact it has on patients
England tested elements of and their families. In learning how to manage cancer in my own
survivorship care. Eleven of life, I realised that there was a lot more we could do to support
these sites were testing those who were living with the disease and I have been fortunate
approaches to assessment and to have had the opportunity to contribute to these developments
care planning and use of the that can make a real change. I believe that by identifying peoples’
Treatment Summary. In practice, needs by careful assessment and care planning and with the right
for the majority of test sites, support in place, we can make risk stratification work to improve
there was a separation between the quality of survivorship. Better patient information and
survivorship support services and education for survivorship will give people the opportunity to take
clinical follow up. The work in control of their lives again. It has been a privilege for me to be able
the pilot sites was captured in to work with NHS Improvement and the NCSI to make living with
The Improvement Story So Far8, and beyond cancer an active and fulfilling experience for those
Picker testing elements of care who are fortunate enough to survive.
evaluation9, a summary of the
testing of assessment and care
planning10 and Treatment Record
Summaries11
6. 6 Introduction
• In the summer of 2010 clinical The outcomes from these pieces of
consensus meetings were held to work have provided the scope for
develop risk stratified pathways further testing. This work will
of care for six tumours; breast, consist of the testing of risk
colorectal, lung, prostate, head stratified pathways of care and
and neck and myeloma. The two critical enabling projects;
prototype summary pathways remote monitoring and care
are contained within this coordination. It needs to be
document in each of the remembered that the care and
tumour sections. support of individuals following
• In the autumn of 2010, an their cancer treatment does not
economic evaluation to happen in isolation but is part of
determine the cost of five years the seamless provision of care from
of follow up after treatment experiencing symptoms until he
for the service and the patient end of their life. This ongoing
was undertaken for breast, testing work will be the focus of
colorectal, lung, prostate and the remainder of this document.
myeloma patients.
Vanessa Brown, National Anne Wilkinson, National Sue O’Neil, PA - NHS
Improvement Lead, NHS Improvement Lead, NHS Improvement - Adult Survivorship
Improvement Improvement
7. The hypothesis - testing risk stratified pathways of care 7
The hypothesis - testing risk stratified
pathways of care
This phase of testing is taking a
whole system approach looking to
redesign the pathways of care in
four tumour sites with the focus
on risk stratification. The resulting Testing
model of care, when tested, Risk Stratified 3 levels
should provide early evidence on Pathways of Care of care
13 tumour projects,
the benefits of this approach in 7 test sites
compared to the current
widespread traditional model of
Provision of
care. This is in keeping with Assessment
current policy of care closer to and Care Plans
home and increasing the Treatment 4 tumour
Summary types: breast,
proportion of self managed care colorectal, lung
for those living with and beyond Incorporating & prostate
testing of key
cancer. Given the nature of cancer enablers:
survivorship, evidence will accrue Remote monitoring
Care coordination
over time and, this current phase
of testing will require data
collection to continue in the longer
term to ensure the full impact of
risk stratified pathways is captured.
The overall direction of the work is disease process, the treatment The testing hypothesis is that
led by an NHS Improvement received and the individual’s through risk stratifying into
Director and National Clinical Lead, personal circumstances. There are appropriate level(s) of care there
supported by a National two essential underpinning will be:
Improvement Team and National enablers without which the model
Clinical Advisers. The mandate for may not achieve the full potential. • An improvement in the
this work is through the National The key enablers are remote experience and patient reported
Cancer Survivorship Initiative surveillance which ensures patient outcomes of care from baseline
(NCSI) Steering Group, Cancer safety at a distance, and care • A 50% reduction in outpatient
Programme Board and NHS coordination which should ensure attendances from the traditional
Improvement Executive Team. services and communication model
channels function across • A 10% reduction in unplanned
Regardless of whether individuals organisations and appears admissions from baseline.
have been treated with curative or seamless to the individual.
palliative intent, the same model
should apply with risk stratification
into an appropriate level of care.
This should take account of the
8. 8 The hypothesis – testing risk stratified pathways of care
Model of Care: Living With
and Beyond Cancer
The national test sites
There are seven national test sites
working on 13 adult tumour National Cancer Survivorship
projects. The testing will be Initiative (NCSI) - Adult
completed by December 2011. The
Prototype Sites (2011)
report on this phase of testing,
including the evaluation, will be 1 Hull and East Yorkshire
completed by April 2012. There Hospitals NHS Trust
will be, as previously mentioned, a 2 Ipswich Hospital NHS Trust 1
need for ongoing measurement to 3 Luton and Dunstable Hospital
evidence the longer term benefits NHS Foundation Trust
of this risk stratified model of care. 4 North Bristol Hospital
NHS Trust
5 Guy’s & St Thomas’ NHS
Foundation Trust 2
6 Hillingdon Hospital NHS Trust 3
7 Brighton and Sussex University
Hospitals NHS Trust 5 6
4
7
9. The hypothesis – testing risk stratified pathways of care 9
Risk stratification Risk stratification proportions table
As a result of the pilot phase of the
testing and consensus meetings to Self Shared Complex
agree the prototype pathways in Management Care Care
each of the tumours the difference
in risk stratification for each Breast Cancer 70% 10% 20%
tumour became apparent. The
percentages in the table opposite Prostate Cancer 40% 25% 35%
were agreed as the hypothesis for
the proportion of patients likely to Lung Cancer 15% 60% 25%
be risk stratified to each pathway.
During the testing, clinical teams Colorectal Cancer 40% 30% 30%
will be identifying the criteria for
stratifying into the different levels
of care and whether the suggested
proportions are applicable in
practice. Treatment summary cancer diagnosis e.g. spinal cord
The treatment summary should compression following
Key assessment/reassessment summarise the current state and radiotherapy and there will be
triggers also the signs and symptoms that elements which are generalisable
There is an assumption that all both the individual and e.g. physiotherapy or dietetics,
patients will be offered a care plan professionals providing care should across the different tumour types
updated when reassessment takes be looking out for. Information and also to non cancer conditions
place, have a timely treatment and education should be tailored and diseases.
record summary updated and to the individual through the
communicated appropriately after assessment process and be part of Key elements to support self
each phase of treatment. With the their care plan. Education and management
patient’s consent this should be support will also be required across • Information and education
shared with those providing or the clinical community. Good appropriate to the individuals
supporting care delivery. It is communication in a timely manner needs
recommended that every patient is critical between professionals • Key contacts for care/support in
diagnosed with cancer is provided and with the individual who is and out of hours for cancer and
with a hand held record, either in living with or beyond cancer. non cancer related problems
paper or electronic format, which This is therefore about a package • Appropriate timely access if the
contains information pertinent to of care for the individual which is condition changes
their ongoing management - seamless across organisational • Effective care coordination
whether this is self or boundaries, with the right care, at • Effective remote monitoring as
professionally managed. the right time, first time. appropriate.
The key trigger points for Relationship between cancer
assessment or reassessment along and other diseases/conditions
the pathway of care will depend There will be elements of the
on the disease process, the pathways which are unique to
treatment and the individual individual tumour types and also to
patient circumstances. individuals living following a
10. 10 The hypothesis – testing risk stratified pathways of care
Measures HES data will provide a next few years and beyond in
Various measures will be collected retrospective picture of changes order to measure and assess the
locally and nationally: over time. It is recognised that ongoing impact and full extent of
there will be a need for further the savings associated with this
• The number of prospective evaluation of this work over the model of care.
outpatient follow up slots saved,
based on point of pathway
where patients risk stratified to Quality, Innovation, Productivity and Prevention (QIPP)
no further routine follow-up care
• The number and percentage of
The QIPP agenda is a national teams nationally or
patients risk stratified to each of
priority and this programme of internationally who have pulled
the levels of care within each
work is aligned to those together elements of care into a
tumour type
priorities. Improving the ‘total’ package driven by
• The number of unplanned
quality of patient care is at the effective risk stratified pathways
admissions for patients with a
heart of the NCSI agenda, of care for those living with and
known diagnosis of cancer
empowering patients to live beyond cancer. This is a
• The number of referrals to care
with and beyond cancer. The significant cultural shift for
and support services (internal
traditional model of cancer individuals who have had a
and external)
after care does not encourage diagnosis of cancer and for the
• Ipsos MORI is working in
patients to exercise choice and clinical teams supporting them.
partnership with national and
control in their journey.
local teams to undertake a
Also there is little evidence to Productivity: Through
Patient Reported Outcome and
support the current traditional delivering risk stratified
Experience Measure survey as a
‘one size fits all’ model of pathways the reduction in
baseline prior to testing of risk
follow up offered to many unnecessary appointments will
stratified pathways and repeated
cancer patients around the release resources to help meet
for a cohort of patients stratified
country. access targets and provide
into the new pathways in
capacity to support patients in
January/February 2012
Quality: The introduction of greater need. Better
• Evaluation of care coordination
risk stratified pathways of care coordinated and informed care
and remote monitoring is
will result in more effective, and support will contribute to a
currently under discussion.
efficient service delivery which reduction in unplanned
should enhance patient admissions.
Evaluation
experience and reported
The evaluation of this programme
outcomes of care. This will Prevention: The emphasis will
of work will come from the Ipsos
also encourage supportive self be on secondary prevention
MORI experience/ patient reported
management rather than a through having an effective
outcome of care surveys, the
paternalistic model of care. pathway that is personalised to
evaluation of each of the enabling
the individual and encourages a
projects, care coordination and
Innovation: The pathways and healthy lifestyle through exercise
remote monitoring, local audits,
their constituent parts are and healthy living.
experiences and improvement
innovative in that, as far as we
work being undertaken in each of
are aware, there are no clinical
the test sites and their reported
learning and results. The national
11. National Cancer Survivorship Initiative Support Projects 11
National Cancer Survivorship Initiative
Support Projects
The NCSI goal for the prototype Supported self management Vocational Rehabilitation (VR) -
sites is to provide evidence based, demands a cultural shift that views The VR project provides services
best practice integrated care the person with cancer as an and information to help people
pathways for breast, colorectal, expert in themselves and the with cancer remain in or return to
prostate and lung cancer patients health care professional as experts work. The NCSI Vocational
which can be rolled out across in cancer care both working Rehabilitation Project has
the NHS. There is an offer of together in partnership to achieve developed a four level model of
support to the prototype sites the best outcome for the person Vocational Rehabilitation which
incorporating one or more of the with cancer. A number of provides early information and
following within their testing voluntary sector partners in care support at Levels 1 and 2 and a
work: can offer support to establish a Vocational Rehabilitation Case
range of self management Manager at Levels 3 and 4 with
Benefits made clear12 - A opportunities, including training of referrals to specialist services such
Macmillan interactive online tool facilitators, support for as physiotherapy and self
offering benefits advice and professionals to develop management programmes eg
information for patients, full confidence in engaging patients fatigue and pain management.
support to use the tool and within a more collaborative Macmillan can offer support to
supporting materials are available. approach to care. establish vocational rehabilitation
services within the prototype sites,
Health and Well Being Clinics - Physical activity - There is robust provide advice and access to e-
Health and Well Being Clinics are evidence of the effectiveness of learning programmes and
one off events, a group physical activity for those living information, both printed and on
programme delivered by a mix of with and beyond cancer. It can line and provide peer support from
professional staff supported by have a positive effect on the side an established network of VR
trained and inspired volunteers. effects of radiation, chemotherapy, pilots.
The clinics offer expert advice on immunotherapy hormone therapy
health and wellbeing, access to and steroid therapy. Additional Many of the above projects
support groups, reliable support for prototype sites is within NCSI are coordinated with
information, financial benefits and available to integrate evidence Macmillan Cancer Support. This
support and give people the based physical activity promotion testing will contribute to the best
confidence and skills to manage and services into standard patient practice evidence base, and to the
their condition themselves as far care, at appropriate points across overall aim of the NCSI to ensure
as possible. the patient care pathway, and that all cancer survivors receive the
champion the promotion of help and support that they need.
Supported self management - physical activity across oncology For further information about
To enable supported self and primary care for cancer Macmillan and other tumour
management to take place patients. specific voluntary organisations
changes need to be made in skills involved in providing support to
development programmes for the test sites please see the
professionals, self management resource page in the tumour
support options for sections and at the end of this
patients/survivors and institutional document.
support for service redesign.
12. 12 Enabling projects: Care coordination
“
Care coordination is a function
not an individual.
”
13. Enabling projects: Care coordination 13
Enabling projects: Care coordination
Care coordination is not one
person’s role, job or responsibility.
It 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.
There are models for care
coordination in other policy areas:
The single assessment process for
older people13, person-centred
planning for people with learning
difficulties14 and The Care
Programme Approach15 (CPA) for
people with a mental illness. All of
these referred to the importance of
assessment, care planning, care
coordination, review and the This will help to facilitate efficient • Proactive and prompt access and
importance of joint working across transfers of care throughout the intervention when needed
health and social care within their pathway, wherever they occur, • Appropriate provision of correct
specialist areas which resonates whether to vocational information to enable individual
with our hypothesis and prototype rehabilitation, physiotherapy, choice and control
pathways. voluntary services, social care, or • Proactive monitoring as
end of life care. necessary (remote monitoring
As good care coordination will where possible)
provide the best opportunity for A working group consisting of • Transition of care along the
patients to be confident to self clinicians, patients and service pathway should appear seamless
manage their lives with and managers are guiding and advising to the person receiving the care
beyond cancer, it is important for the direction of this enabling • Provision of correct information
all tumour teams that care project. The group has developed for healthcare professionals to
coordination is addressed whilst the guiding principles for support effective patient
testing the new risk stratified delivering good care coordination management in the event of
pathways. Building relationships as detailed below: care delivery away from their
and networks is crucial to usual care team e.g. hand held
improving care coordination - not Guiding principles record with the components
just within the NHS, but beyond to • Good communication and listed:
social care, charities, community professional relationships, formal
care providers and other agencies and informal, between the
that meet the needs of individuals. patient, their carer/family and
the care or support team
14. 14 Enabling projects: Care coordination
Hand held record components Testing Evaluation
• The treatment summary gives Care coordination will be tested as The evaluation of care
information on diagnosis, part of the overall flow of the coordination will centre on clearly
treatment, the clinical pathway. Any issues may also be defined questions set in focus
management plan and the cause of unplanned admissions groups led by external facilitators.
includes signs and symptoms or contacts with the health care This will include the usefulness and
to look out for. (The care plan team which will be monitored effectiveness of the Hand Held
may be integrated into the throughout the testing. There will Record from both the patient and
document or may be a separate also be a care coordination audit staff perspective. With consent
document) tool for teams to use locally to from participants we will use
• A care plan, where it is not consider their local stakeholders, selected quotes and detailed
incorporated within the geography, facilities and services thematic analysis to produce clear
treatment summary, should be outside health, efficiency in findings in separate patient focus
available for all patients and interagency communication and groups and health, social and care
should outline needs identified, patient information and feedback. staff focus groups
who is taking action to meet It is hoped that this approach will
those needs and timescales also prompt other agencies to The audit tool results will form part
• Contact numbers for support think about their own of the evaluation. There will be
services appropriate to their communication and coordination. various national and local
needs This will be reviewed after testing measures collected regarding the
• Telephone numbers to contact if to identify where things have effectiveness of care coordination.
patients have cancer related or improved and areas for further
non-cancer related symptoms, work.
in or out of office hours
Guiding principles
• A self assessment should be
available for completion, should
patients feel their condition or • Good communication and
professional relationships
for delivering good
care coordination
needs change (This should be
sent to the appropriate contact) • Proactive and prompt access
• A section for recording any to appropriate service
issues the patient is • Timely information provision
experiencing, what they have and support
done about it and whether it • Seamless care transition
resolved the problem. This across services and providers
information will be useful where • Hand held record with
the individual’s care crosses ‘Then, Now and When’
organisational or professional • Proactive monitoring,
boundaries. remotely where appropriate.
15. Enabling projects: Remote monitoring 15
Enabling projects: Remote monitoring
Background REQUIRED FUNCTIONALITY OF REMOTE MONITORING:
During meetings to seek
agreement on the new prototype 1. To pull patient data set information from PAS via the local
pathways of care, it became cancer information system
apparent that access to a safe 2. To pull test results from local diagnostic IT systems
reliable system that enables 3. To store key diagnostic and key patient history data
clinicians to monitor large numbers 4. To log any relevant treatment history during monitoring
of stable patients in the period including a log of patient contacts
community without the need for a 5. To set individual patient range/tolerances for specific tests
face to face follow up 6. To schedule tests based on user definable follow up schedules
appointment was a key enabler for 7. To hold a range of template letters to enable communication of
testing risk stratified pathways of results to patients and GPs by post or electronically
care. Such systems were 8. To include an alert system that identifies test results for review,
considered appropriate for breast, due dates exceeded or test result that exceed tolerance
prostate and colorectal specialties 9. To provide a summary history and treatment page with test
where routine standard tests results shown numerically and graphically
applied and where interpretation 10. To record the outcome of any event or test
of results could take place 11. To provide standard and ad hoc reporting and routine monitoring
remotely. function and be amenable to clinical audit
12. To be NHS and HL7 compliant with secure access
Responding to the opportunity this 13. To use a common file format for all data export to be able
offered, a small working group to import the data into local IT systems if required.
comprising test site clinicians and
IT representatives was established
and the key requirements for the
system identified. We are indebted Prostate cancer Colorectal cancer
to Mr Jon McFarlane, Consultant The main indicator for prostate Surveillance tests following
Urologist at the Royal United cancer is the prostate specific treatment for colorectal cancer
Hospital, Bath and his team who antigen test (PSA). Whilst not the comprise regular carcinoembryonic
helped inform the development of only indicator of recurrent disease, antigen (CEA) tests, CT scans and
the solution for prostate cancer it is the test used routinely to colonoscopy or sigmoidoscopy
and on which the colorectal monitor patients in the follow up procedures depending on the site
solution will also be based. period for a minimum period of of the tumour. The exact frequency
five years and often for life. The of tests is determined locally and
PSA tolerance level is based on the re-investigation prompted if there
treatment received. is any clinical, radiological or
biochemical suspicion of recurrent
From a clinical perspective the disease.
system needs to provide data that
demonstrates PSA results The remote monitoring solution for
numerically and graphically over colorectal will need to access a
time as a gradual increase in PSA variety of test results from various
levels, even if levels are within sources to inform the decision
tolerance, can indicate disease making process.
recurrence.
16. 16 Enabling projects: Remote monitoring
Breast cancer Model 2 - Off site Breast NHS Trust, The Royal United
For patients following treatment Screening Unit - Patients are Hospital in Bath and prototype test
for breast cancer annual referred for annual mammogram sites have been testing the
mammography should be offered to the National Breast Screening proposed solution for PSA
to patients for five years or until Service and managed through the monitoring over recent weeks.
they reach screening age (in NBSS System using an identical
England this is 47 years). We know NBSS system to that for high risk Once this and the testing of the
that many patients continue to patients with familial disease. interface connectivity are complete
attend outpatient clinics simply to Results are sent by letter to the solution for prostate cancer
receive the results of their patients and copied to the GP. PSA monitoring will roll out to the
mammogram test. Abnormal results are referred to prototype sites for use from early
surgeon to arrange recall and July. The modifications for
Given that some good systems further investigations. Server and colorectal cancer will be developed
already exist for breast licence costs approximately during June with rollout
mammography a decision was £5,000. anticipated from August.
made by the working group to use
existing systems where possible The IT solution being tested The following screenshots provide
rather than reinvent the wheel and The IT developer in partnership examples pages from the proposed
develop a specific module within with colleagues at North Bristol solution using fictitious data.
the new IT solution. The two
models for mammography
surveillance that have been
identified are:
Model 1 - On site Breast
Screening Unit (BSU) - Patients
are recalled for annual
mammography with appointments
booked on standard PAS clinic
booking system (paper
mammography clinic) with the
reports generated by screening
radiologists on standard radiology
reporting system (CRIS). The BSU
send results of the mammogram to
the patient, GP and surgeon.
Abnormal results referred to the
MDT and recalled to the BSU for
Screenshot 1: The system automatically draws patient dataset and GP details
further investigations if required
from the Trust Patient Administration System (PAS). This ensures data is always
accurate and up to date.
17. Enabling projects: Remote monitoring 17
An evaluation of the prostate and
colorectal modules will take place
in early 2012 following the initial
six months of use along with other
locally developed systems where
Trusts have used or developed their
own solutions for this purpose.
Screenshot 2: The PSA tracking page automatically draws PSA test results
from the Trust pathology systems and plots on a graph below for easy
interpretation.
Screenshot 3: The ‘Alert’ page identifies patients where an action is required
either that a test result requires review, a delay has occurred in the test being
taken or to indicate that a test tolerance limit has been exceeded.
18. 18 Breast cancer
Breast cancer
Introduction Breast cancer overview
“Breast cancer services must Breast cancer is the most common
accommodate an increasing cancer in the UK. Over 50,000
number of cancer survivors, due new cases are diagnosed per year,
to the increased incidence related including approximately 300 men
to an ageing population and with breast cancer. Breast cancer is
one of the few cancers where
improved survival due to
incidence rates are higher for more
improved detection and affluent women and there is a
treatment. clear trend of decreasing rates
from least to most deprived. The
The National Cancer Survivorship incidence is gradually increasing
Initiative seeks to improve patient due to the ageing population
Dorothy Goddard, National
experience and outcomes and Clinical Adviser - Breast Cancer
(81% in women aged over 50 yrs).
meet the needs of an increasing A report by Cancer Research UK
number of survivors, whilst estimates that:
ensuring services are sustainable
• The lifetime risk of being
and safe.
diagnosed with breast cancer is
one in eight for women in the
Models of care are in development which will be risk stratified UK
according to individual patients needs, disease and co-morbidities. • Female breast cancer incidence
This will result in removal of regular planned clinical follow up for rates in Britain are increasing,
most patients (approximately 70%) with information and support and have increased by more than
for self management. 50% over the last 25 years
• In the last decade, female breast
There are five breast multidisciplinary teams which are testing cancer incidence rates in the UK
different aspects of the new models of care including: personalised have increased by 3.5%.
patient treatment summary and care plan; patient education;
Survival rates for breast cancer
mammography surveillance with robust recall systems; assurance of England are over 80% at five years
prompt access and intervention when required. and have been improving for 40
years.
As the newly appointed breast cancer clinical adviser I look forward
to working with the clinical teams in Hull, Ipswich, Brighton, The initial treatment phase can
Hillingdon and North Bristol as they commence testing the include surgery, chemotherapy,
hypothesis based on the risk stratified pathways of care.” radiotherapy, hormone therapy -
sometimes continuing with
Dorothy Goddard, National Clinical Adviser - Breast Cancer hormone therapy for several years.
19. Breast cancer 19
Follow up after treatment for There is variation nationally on the Various charities are supporting
breast cancer is one area where frequency and duration of follow the teams in delivering this testing
some work has already been done up. In the ‘Rapid Review of Follow work such as Breast Cancer Care,
on reducing unnecessary up Practice in England’7 the further information can be found
outpatient follow up frequency of follow up ranged on the resources page.
appointments. This has been from one outpatient visit to 12
achieved by introducing drop in visits or more over a five year This programme aims to address
clinics, open access clinics and also period. Some patients are survivorship needs and will focus
empowering patients to self followed up for life. on the assessment and care
manage from the end of planning especially after end of
treatment, accessing the CNS by NICE guidelines16 suggest the treatment, information for the
phone and only attending clinics following surveillance tests: patients and the GP and on
when deemed necessary. improving access to support
• Offer annual mammography to services to enable people to return
The main reasons cited for all patients with early breast to as normal a life as possible
traditional regular follow up cancer, until they enter the following their treatment.
appointments for breast cancer Breast Screening Programme or
are: for five years for patients
diagnosed with early breast
• Discussing or prompting annual cancer that are already eligible
mammography as part of for screening
monitoring post treatment • Do not offer ultrasound or MRI
• Monitoring of patients on for routine post-treatment
hormone therapy surveillance in patients who have
• Psychological support and had early invasive breast cancer
reassurance for the patient or ductal carcinoma in situ
• Facilitation of audit. (DCIS).
Recurrence is estimated to be Breast cancer treatments can
approximately 10-20% within ten lead to late effects, such as
years of diagnosis, although most lymphoedema from radiotherapy,
recurrences occur within five years infertility and premature
and the likelihood varies with the menopause from chemotherapy,
type of cancer. Patients should be osteoporosis from hormone
aware of the symptoms and signs therapy, cardiac damage from
to look out for and when to seek chemotherapy or radiotherapy and
help. Most recurrences are very importantly, breast cancer
detected by the patients survivors do have an increased risk
themselves or on mammography of significant depression.
surveillance rather than at routine
clinical follow up.
20. 20 Breast cancer
Risk Stratified Breast Cancer Pathway - For Testing
LOW RISK PATIENTS
CURATIVE INTENT
Radical
/adjuvant treatment
MDT
Follow up All other
assessment patients
risk Frequency Review
Diagnosis stratification of follow up care
and determined plan
Treatment by need
Summary
Assessment
care plan PALLIATIVE INTENT Education,
commenced Other treatment or Review support
management care plan services and
optimisation
for self
management
Care coordin
KEY FEATURES
Risk stratification decision points Review care plan (following treatment)
For the majority of patients with low risk factors for disease, The period following end of treatment is key to establishing an
treatment effects and individual circumstances it may be feasible to appropriate care plan that include supportive care services to enable
refer to a self managed pathway with annual mammograms the patient to self manage.
immediately after the end of treatment.
21. Breast cancer 21
Patient
recalled
for
ABNORMAL review
RESULT
Referral for annual
mammography
Self Routine Results to Review
management mammography NORMAL patient & hormone Self
- estimate as per GP by therapy management
RESULT patients at
70% protocol post/email
3 & 5 years
Review care plan as pathway changes
Changing needs may trigger
further risk stratification
Clinician led
follow up
Shared care Review pathway
- estimate choice each visit Shared care
10% Frequency
determined
by need
MDT/Consultant
led follow up
Complex care Review pathway
- estimate Complex care
choice each visit
20%
Frequency
determined
by need
Transition to
end of life
care
nation
Support services of particular relevance to breast cancer patients Remote monitoring
• Diet and nutrition – advice on diet especially where there is To incorporate the scheduling and monitoring of annual
concern over weight changes. mammograms for five years with results reviewed by the team and
• Exercise – there is increasing evidence that physical activity patients recalled to clinic if results are found to be abnormal.
helps recovery and reduces risk of recurrence. Behavioural
changes require investment of time, expertise, training and Entry into the National Breast Screening Service Programme if over
encouragement. screening age or auto recall as appropriate until reach the upper
• Peer support - talking to others about their cancer experiences screening age range. Open access back into the service is available
and meeting others living beyond cancer as positive role models. at all times.
22. 22 Breast cancer
“
The National Cancer Survivorship
Initiative seeks to improve
patient experience and
outcomes and meet the needs
of an increasing number of
survivors, whilst ensuring
services are sustainable
and safe.
”
Dorothy Goddard, National Clinical Adviser - Breast Cancer
23. Breast cancer 23
Brighton and Sussex University Hospitals NHS Trust
Richard Simcock
Breast Clinical Lead and
Consultant Clinical Oncologist
richard.simcock@bsuh.nhs.uk
Anne Jackson
Lead Nurse – Breast Cancer
anne.jackson@bsuh.nhs.uk
Venessa Neylen
Project Manager
venessa.neylen@bsuh.nhs.uk
Current service In 2009, the team trialled an We are planning to test an end of
The Park Centre for Breast Care ‘information day’ for patients and treatment assessment using the
opened in Brighton in November carers that proved very successful ‘Distress Thermometer’, the
2008 as the first unit of its kind in and recognised the opportunity preferred tool across our Trust. We
the country, offering the latest that such an event could offer as also plan to use the ‘Breast Cancer
mammography technology and all part of a redesigned pathway of Care’ care plan booklet and CD
outpatient services under one roof care. which also allows space for local
as part of Brighton and Sussex information and support groups.
University Hospitals (BSUH). Our Testing We are also testing the treatment
breast screening service is currently “Building on our earlier work we summary to help improve
rated in the top 10% in the UK by are really keen to establish regular communication with GPs to assist
the National Breast Screening information ‘events’ as part of our them with their role in supporting
Programme. mainstream service with a patients in primary care.
particular focus on weight
The unit diagnoses around 575 management, exercise and Our clinicians are currently working
new breast cancers a year. Most vocational rehabilitation. Our first on the revised protocol for risk
surgery takes place at The Princess event is planned for September” stratifying patients for follow up
Royal Hospital, Haywards Heath said Venessa Neylen, Clinical that will result in a reduction in
with radiotherapy at the main Services Manager. “We will hold unnecessary outpatient visits for
Royal Sussex County Hospital in the first event in the modern post many patients.
Brighton. The Trust is planning to graduate centre which offers good
be a test site for the 23 hour bed non clinical facilities for such Finally, one of the key enablers for
model for breast surgery. events. We are well on the road to our new care pathway will be a
agreeing the agenda and system for arranging annual
Our current breast cancer follow arrangements for the day and mammograms. We are working
up protocol includes six consultant hope that many patients will be with NBSS to see if their system for
led appointments over five years able to attend.” this purpose, which will also help
before discharge to the GP. us improve the system for
screening high risk familial
patients.
24. 24 Breast cancer
North Bristol Hospital NHS Trust
Simon Cawthorn
simon.cawthorn@nbt.nhs.uk
Ajay Sahu
ajay.sahu@nbt.nhs.uk
Sasirekha Govindarajulu
sasirekha.govindarajulu@nbt.nhs.uk
Breast Clinical Leads and Breast
Surgeons
Jane Barker
Senior Clinical Nurse Specialist
jane.barker@nbt.nhs.uk
Dany Bell
Project Manager
dany.bell@nbt.nhs.uk
Current service A member of the team said “We We have an automated call and
The breast cancer service for the have been running patient ‘look recall system for mammography
Trust will be based at Southmead after yourself’ days for about nine that is linked with the screening
Hospital from June and is where years and as a team have used this service when patients reach 50.
surgery will take place. project to share and expand this
Chemotherapy and radiotherapy is model to develop living well We will be further developing our
delivered at University Hospitals courses with clinical psychology local Client Relationship
Bristol NHS Foundation Trust. We and Penny Brohn Cancer Care. We Management System to
are currently centralising all breast have previously reduced follow up incorporate the findings from the
services across the city to to one year”. distress thermometer and an
Southmead Hospital. electronic care plan and treatment
Testing summary that will be shared with
Across the City we see We have recently expanded our patients and GPs.
approximately 700-800 new breast ‘look after yourself’ programme in
cancers a year. We are in the partnership with the Penny Brohn We are currently looking at options
process of implementing the 23 Cancer Centre developed ‘living available for a hand held record for
hour ambulatory mastectomy well’ courses and a ‘self cancer patients.
model and have well established management’ course
nurse led follow up clinics for with clinical psychology. We will be collecting data on
breast cancer patients. unplanned admissions, prospective
We will be testing the new follow up slots saved for patients
pathway to empower patients to self managing and referrals to
self manage following an initial support services.
post treatment with annual
mammography and no routine
follow up.
25. Breast cancer 25
The Hillingdon Hospitals NHS Foundation Trust
Amy Guppy
Breast Clinical Lead and
Consultant Clinical Oncologist
aguppy@nhs.net
Elizabeth Patterson
Clinical Nurse Specialist
Elizabeth.Patterson@thh.nhs.uk
Nadine Teuton
Clinical Nurse Specialist
Nadine.Teuton@thh.nhs.uk
Terry-Anne Leeson
Clinical Nurse Specialist
Terry-Anne.Leeson@thh.nhs.uk
Quotes from members of the “As professionals we are using
Juliette Walker team: this project to streamline all our
Project Manager
Juliette.Walker@thh.nhs.uk processes and information so
“This project gives us the that we are consistent and
opportunity to formalise the structured in our approach as a
process for risk stratifying team.”
Current service patients to a self management
The breast service for the Trust is pathway and to work on the Testing
based at Hillingdon Hospital where automation of the call and We will be using the distress
the majority of surgery takes place. recall system we have for the thermometer as both our assessment
Chemotherapy and radiotherapy annual mammograms that and stratification tool for patients at
are provided at Mount Vernon patients require.” the end of their breast cancer
Cancer Centre. The unit sees treatment. The distress thermometer
approximately 170 new breast will be used to address patient’s
“Whilst we have excellent
cancers per annum. needs and develop an individualised
support services available at the care plan. This work will continue
The self management model of Linda Jackson and Yiewsley from that developed by our lung
after care has been established Centres we recognise that this cancer team who took part in the
over an eight year period with the is not local to all our patients. assessment and care planning pilot
majority of breast cancer patients We will be working with the phase.
being offered a self management NCSI project leads to improve
pathway post treatment. Patients access to exercise, health and We will also be testing this pathway
receive telephone support from wellbeing and vocational in patients diagnosed with advanced
their original breast care nurse and rehabilitation to help us to disease and developing relevant
direct open access back to either a information packs in conjunction
maximise opportunities for our
breast or oncology clinic to a nurse with the Information Prescribing
led clinic if required.
patients in these areas.” pilot. We will also be working with
Breast Cancer Care to evaluate their
resources for women with breast
cancer.
26. 26 Breast cancer
Hull & East Yorkshire Hospitals NHS Trust
Miss Penny McManus
Breast Clinical Lead and Breast
Surgeon
penelope.mcmanus@hey.nhs.uk
Philippa Robinson
Clinical Nurse Specialist
philippa.robinson@hey.nhs.uk
Lesley Peacock
Project Manager
lesley.peacock@hey.nhs.uk
Current service
The breast unit is based at Castle
Hill Hospital where all breast
surgery, chemotherapy and
radiotherapy take place. The unit Following an assessment of Testing
sees approximately 509 new breast support services we recognise We are using an assessment tool
cancers per annum. We are based on the Macmillan
the need to work with the NCSI
successfully running a nurse led survivorship assessment and
project leads to further develop
survivorship programme completing a care plan for patients
support for health and
as part of their survivorship
Quote from member of team: wellbeing, exercise, self pathway.
management and vocational
“Having already recognised the rehabilitation in some areas of We are testing the Treatment
need for support for patients in our patch. Summary as we recognise that GPs
the survivorship phase of their need more information to help
cancer journey we had already As a team we are using this them to play their part and also
begun looking at assessing project to help us to formalise see this as an excellent summary to
patients one year post diagnosis some of the processes we are have in the patient’s notes at the
already working with to hospital should they present again,
to help provide services to
as a summary for the MDT to see
enable them to self manage. empower patients to self
at a glance the previous diagnosis,
manage.” treatment and outcomes.
We will be collecting key
measurement data throughout and
have implemented a NBSS system
to track the call and recall of
mammograms required for our
patients.
27. Breast cancer 27
The Ipswich Hospital NHS Trust
“Having already recognised the Testing
Miss Caroline Mortimer We will be using the Anglia
need for support for patients in
Breast Clinical Lead and Network wide approach to
Breast Surgeon the survivorship phase of their
cancer journey we had already assessment, using an adapted
caroline.mortimer@ipswich
distress thermometer as our
hospital.nhs.uk begun assessments and
assessment tool and completing a
education for patients that have combined treatment summary and
Liz Sherwin completed treatment in all
Breast Clinical Lead and care plan in one document for
cancers. A four week education patients as part of the hand held
Breast Oncologist
liz.sherwin@ipswichhospital.nhs.uk programme or twice yearly record which we are testing.
education days are available to
Rachel Hockney empower patients to self We are planning to test an
Clinical Nurse Specialist manage to suit individual need. electronic ‘live’ copy of this
rachel.hockney@ipswichhospital. Working with the NCSI project document that can be accessed by
nhs.uk leads, local authorities and PCTs health care professionals at any
time in the pathway. This should
Louise Smith
as part of the Fit Villages scheme
greatly improve care coordination.
Project Manager on exercise and rehabilitation to We will be collecting key
Louise.m.smith@ipswichhospital. support self management for measurement data on the number
nhs.uk cancer patients and we plan to of patients self managing,
further develop these areas. We outpatient visits and unplanned
have already provided training admissions.
for local fitness instructors to
Current service encompass cancer specific issues
Our breast unit is at Ipswich to enable our patients to access
Hospital NHS Trust where the local leisure facilities.”
majority of surgery, chemotherapy
and radiotherapy takes place. The Louise Smith, Project Manager.
unit sees approximately 300 new
breast cancers per annum and are
considering entering the enhanced
recovery programme in the near
future. We have successfully run
nurse led follow up clinics for a
number of years, which we are
planning to extend as part of the
testing. We already have an
established remote monitoring
system for call and recall for
annual mammograms before the
transfer to the Breast Screening
service.
28. 28 Colorectal cancer
Colorectal cancer
Introduction Colorectal cancer overview
“ I think it is important we all Colorectal cancer is common with
over 36,000 new cases diagnosed
support this survivorship per year. The incidence is gradually
programme that turns the increasing due to the ageing
spotlight on the care provided population (74% in people over 60
years). Incidence rates vary across
for colorectal cancer patients the country suggesting that
following completion of lifestyle and environmental factors
treatment. With the emerging may also be contributory factors.
Survival rates across England are
evidence around diet and around 52% at five years and
exercise in prevention and whilst increasing, still lag behind
John Griffith, National Clinical
recovery and changes to other European countries. These
Adviser - Colorectal Cancer
poor results however, relate to the
secondary treatment options high proportion of patients
the future holds many presenting with advanced disease.
opportunities to improve the Those patients who undergo
potentially curative resection have
quality and effectiveness of the care we provide. Furthermore with equivalent results to those in
the introduction of the standards for patient satisfaction this work Europe.
should give us the tools to deliver the quality of follow up our
The majority of patients have
cancer patients require. I look forward to supporting the clinical surgery, plus or minus chemo
teams at Guy’s and St Thomas’ and North Bristol as they develop radiation therapy during their
and test these new risk stratified pathways of care and to support initial treatment phase.
Approximately 20% of these
and advise on the development of a computerised remote patients have stomas and of these
monitoring system that allows the monitoring of surveillance tests about 80% will have their stoma
and avoids the need for unnecessary follow up visits.” reversed after about a year.
John Griffith, National Clinical Adviser - Colorectal Cancer
29. Colorectal cancer 29
The management of colorectal On surveillance tests the recent
cancer follow up after treatment draft NICE guidelines17 suggest:
varies although there is general
agreement that the reasons for • A minimum of two CTs of the
follow up after curative treatment chest, abdomen and pelvis in the
are for: first three years
• Regular serum carcinoembryonic
• Detection of recurrent or antigen (CEA) tests. An elevation
metastatic disease at an early or in CEA after apparently curable
pre symptomatic stage when treatment is frequently
other curative treatment is associated with recurrent
feasible disease. The exact frequency of
• Provision of psychological tests should be determined by
support and assurance for the cancer networks
patient • Offer a surveillance colonoscopy
• Facilitation of audit. at one year after initial
treatment. If this investigation is
The incidence of disease normal consider further
recurrence is estimated to be 9 - colonoscopic follow up after five
13% and in the vast majority of years.
cases recurrence occurs within two
years of completion of multi- Treatment for colorectal cancer
modality primary treatment leads to very specific side effects
suggesting that more intensive relating to bowel function, sexual
surveillance during this time would function, psychological issues and
be beneficial. activities of daily living. Many
patients have ongoing needs and
Nurse led follow up is often encounter fragmented and
commonplace in many colorectal poorly coordinated follow up care.
units however there is variation
nationally on the frequency and The teams will aim to address
duration of follow up and the these aftercare needs and will
range of surveillance tests offered. focus on the assessment and care
In the ‘Rapid Review of Follow up planning especially after end of
practice in England7 follow up treatment, information for the
visits in this tumour group ranged patients and the GP and on
from 5 -13 visits over five years improving access to support
(average 8.4 visits) across the 21 services to enable people to return
colorectal units surveyed. to as normal a life as possible
following their treatment.
30. 30 Colorectal cancer
Risk Stratified Colorectal Cancer Pathway - For Testin
Duke A, T1, T2
CURATIVE INTENT
Radical
/adjuvant treatment
MDT
Follow up Follow up
assessment and test
risk surveillance Review
Diagnosis stratification for 18 months care
and then review plan
Treatment risk
Summary assessment
Assessment
care plan PALLIATIVE INTENT Education,
commenced Other treatment or Review support
management care plan services and
optimisation
for self
management
Care coordin
KEY FEATURES
Risk stratification decision points Review care plan (following treatment)
For patients with low risk disease it may be feasible to refer to a self The period following end of treatment especially following pelvic
managed pathway with remote surveillance immediately after the radiotherapy is associated with distressing bowel dysfunction and
end of treatment. For the remainder this risk assessment will take dietary problems.
place at 18 months following end of treatment.
Support services of particular relevance to colorectal cancer patients
• Bowel dysfunction – advice and exercises to help overcome bowel
leakage and incontinence following surgery.
• Sexual dysfunction – issues around lack of libido and changes
to body image.
31. Colorectal cancer 31
g
Patient
recalled
for
ABNORMAL review
RESULT
Enrol on remote
monitoring system
Self Routine Results to Continue
management NORMAL patient & surveillance Self
surveillance management
- estimate tests RESULT GP by as per
40% post/email protocol
Review care plan as pathway changes
Changing needs may trigger
further risk stratification
Clinician led
follow up
Shared care Review pathway
- estimate choice each visit Shared care
30% Frequency
determined
by need
MDT/Consultant
led follow up
via joint clinic
Complex care
- estimate Review pathway Complex care
30% choice each visit
Frequency
determined
by need
Transition to
end of life
care
nation
• Diet and nutrition – advice on what to eat and foods to avoid Remote surveillance
to cope with specific problems after surgery, due to stoma or as This will incorporate the scheduling and monitoring of surveillance
result of chemo or radiotherapy treatment. tests for CEA, CT scans and colonoscopy procedures. Test results
• Peer support - talking to others about their cancer and how to will be reviewed by the team and patients recalled to clinic if results
find ‘bowel cancer buddies’. are found to be abnormal. Open access back into the service is
• Exercise – there is increasing evidence that physical activity helps available at all times. Development of a computerised tracking
recovery and reduces risk of recurrence for patients with bowel system to facilitate this is underway.
cancer. Behavioural changes require investment of time,
expertise, training and encouragement.