Adult survivorship: from concept to innovation

NHS
CANCER
NHS Improvement
Cancer

DIAGNOSTICS

HEART

LUNG

STROKE

Adult Survivorship
FROM CONCEPT
TO INNOVATION

National Cancer Survivorship Initiative (NCSI):

NHS
NHS Improvement

Content
Foreword 3

Executive summary 4

Introduction 7

Remote monitoring 15

Care coordination 23

Evaluation 27
• Findings from patient survey on follow up costs
• Patient experience and reported outcomes of care baseline
• Care coordination perception and preference

Breast workstream 38

Colorectal workstream 52

Lung workstream 62

Prostate workstream 74

Next steps 86

Conclusion 88

Visit our website at: www.improvement.nhs.uk/cancer/survivorship

Foreword
As pressures on our NHS continue to increase partly through the increase in cancer incidence and
prevalence and the need to provide efficient service delivery and quality outcomes for patients, the
current traditional model is unsuitable and unsustainable in its current form. The traditional model of
follow up is built on, in the majority of cases, a ‘one size fits all’ approach which does not account for
the specific needs of the individual following treatment for cancer. What is needed is a new model of
care that promotes health and wellbeing and helps individuals move on with their lives following
treatment for cancer, though the expectation for follow up should be set around time of diagnosis.

The National Cancer Survivorship Initiative (NCSI) is a partnership between the Department of Health,
Macmillan Cancer Support and NHS Improvement. As part of this initiative, NHS Improvement is
testing approaches to care and support that ensures that we are moving to a position of not only
supporting recovery from their disease, but also their future health and wellbeing through sustaining
that recovery. During the last few years a proof of principle has been established which if transferable
from the test sites to other organisations will begin the process of spread across the NHS and provide
national risk stratified effective pathways for breast, colorectal and prostate cancers.

We now have the learning and evidence that it is possible to release significant outpatient capacity by
risk stratifying patients and supporting them through technology rather than following them up in an
outpatient setting which has cost implications for the patients and their families as well as the service.
The hypothesis we set out three years ago has now been demonstrated, and as confidence in the new
system builds so will the released capacity. However, it is not only about releasing capacity, it is also
about improving the patients experience and quality of life through treating them as individuals rather
than as a disease. The evidence of the outcomes from this longer term gain will take time to accrue
due to the very nature of survivorship. That being said, initial feedback from patients has been positive
and they feel better informed and more confident to make the choices that could impact on their
future health and wellbeing. Our expectation is that the positive outcomes and improved experience
will be demonstrated through a follow-up survey that will be published in April 2012 and also through
the National Cancer Survivorship Survey and the National Cancer Patient Survey.

Commissioners and providers should embrace this work and proactively support the shift to a safe and
effective stratified model that meets patients’ needs. This will of course require a fundamental shift in
how care is commissioned, moving from spot buying activity to commissioning evidence based
packages of care that can be effectively evaluated though outcomes achieved.

Dr Janet Williamson
National Director, NHS Improvement

3


Executive summary
As a partner in the National Cancer Survivorship Initiative (NCSI), NHS
Improvement has led on redesigning pathways with NHS clinical teams to
improve service delivery and support offered to improve the experience and
reported outcomes of care for cancer patients following initial treatment. The
mandate for this work was outlined as a key priority in the Cancer Reform
Strategy (2007) and Improving Outcomes; a Strategy for Cancer (2011).

Historically, patients completing treatment
for cancer, have followed very traditional,
‘one size fits all’ follow up pathways over
for two to five years or more. The
increasing prevalence of cancer, through
improved screening and awareness and
the increasing number of survivors is
increasing pressure upon already
stretched services that we know cannot
be sustained in the longer term. We also
know through previous research and
more recent patient surveys that patients
report feeling abandoned at the end of
treatment and can live with one or more
unmet needs following completion of
treatment. Something new and radical
needs to be done to improve the
experience and outcomes for patients and
to address the increasing demand on
healthcare resources.

4


In 2011, eight organisations working on The hypothesis for this recent phase of
four cancer pathways across 14 tumour testing was that by introducing risk
teams were selected to test whole new stratified care that meet patient needs
pathways of care with the focus on and that enable patients to self-manage
introducing risk stratified pathways and where appropriate, we would be able to:
support packages that optimise self-
management whilst improving the quality • Improve the patient experience and
and effectiveness of the services provided. reported outcomes of care
• Reduce follow up attendances by an
The belief was that the pathways would average of 50%
provide a more flexible approach to follow • Contribute to a reduction in unplanned
up that was tailored to individual needs. admissions.
The emphasis would be on recovery and
reablement, with individuals’ returning to For breast, colorectal and prostate cancers
a ‘normal’ life as soon as possible and the emphasis has been on supporting
maintaining their recovery through patients to self-manage with remote
supported self management with timely monitoring replacing routine follow up
access should problems occur. where appropriate. For the two lung sites
the emphasis has been on enhancing the
This report brings together the learning services provided with a more proactive
and outcomes from this work that was a approach to the management to
natural progression from the previous symptoms and needs.
phases of testing:
Both qualitative and quantitative data has
• 2008 - Scoping the potential been collected throughout this phase of
• 2009 - Piloting elements of aftercare testing and we are especially grateful to
services the test sites teams and colleagues within
• 2010 - Development and testing in six Ipsos MORI for all their contributions to
tumour areas: this work.
• needs assessments and care plans
• treatment summaries
• 2011 - Developing and testing stratified
pathways - four tumour areas.

5


The outcomes over the past year suggest Within this document you will find
that the principle of stratifying patients sections on each tumour work stream,
following completion of treatment is a section generic to all tumour sites on
appropriate, acceptable and safe as long remote monitoring, care coordination,
as monitoring and support systems are in evaluations associated with the testing
place. From the data collected over six work and the plans for the next phase of
months we know we are well on the way testing as we move to prototyping and
to delivering the 50% reduction in spread across the NHS in England.
outpatient activity across breast, prostate
and colorectal cancer follow ups enabled Although difficult and challenging at
through the provision (actual or planned) times, all the teams have contributed
of remote monitoring systems to manage positively and effectively to this phase of
patients at a distance. testing. The work has been supported by
work streams within the National Cancer
This release of capacity enables not only Survivorship Initiative, Macmillan Cancer
improvements in the quality and Support, the Department of Health cancer
experience of care for those with more team, and specialty specific charities such
complex needs who need more time with as Breast Cancer Care, Beating Bowel
the specialist team during their outpatient Cancer and The Prostate Cancer Charity.
visits but also opportunities for new We are extremely grateful for everyone’s
activity and improvements to access contribution to this programme of work
waiting times. and for the learning shared over the past
year.
The contribution to reducing unplanned
admissions in lung cancer sites has been
around 6-8%; though there has been no
contribution from the other tumour types
that can be attributed to the pathway
change. It is too early to evaluate the
impact on patient experience and
reported outcomes of care through a
follow up survey to compare the new
model of care against the baseline which
is planned for early in 2013.

6


Introduction
The National Cancer Survivorship Initiative (NCSI) was set up as an outcome
of the Cancer Reform Strategy 2007 and remains a key component in the
Improving Outcomes: a Strategy for Cancer (2011). As a partner within the
NCSI, NHS Improvement has focused attention on supporting clinical teams
within the NHS to test a new model of care for people living with and beyond
cancer.

The governance of this work programme
is through the NCSI Steering Group, the
National Cancer Programme Board and
NHS Improvement Leadership Team.

The overall direction of the work has been
led by an NHS Improvement Director and
National Clinical Lead, supported by
National Improvement Leads and National
Clinical Advisors.

The clinical teams at a local level have
been supported by Macmillan Cancer
Support and key tumour specific charities;
Breast Cancer Care, Beating Bowel
Cancer, and The Prostate Cancer Charity.

In 2009, 14 test sites teams were asked to
test new approaches to aftercare support.
A further 11 teams joined in 2010
specifically to test assessment and care
planning and the use of treatment
summaries at the end of treatment. The
principle organisations involved are listed
on the following page:

7


Figure 1

Testing elements of survivorship care Testing assessment and care planning
and support (2009/10) and treatment summaries (2010/11)

East Kent Hospitals University NHS Ipswich Hospital NHS Trust
Foundation Trust
Brighton and Sussex University Hospitals
Guys and St Thomas’ Hospital NHS NHS Trust
Foundation Trust
Poole Hospital NHS Foundation Trust
University College London Hospitals NHS
Foundation Trust The Royal Marsden NHS Foundation Trust

South of Tyne and Wear NHS Trust The Hillingdon Hospital NHS Trust

Velindre Hospital NHS Trust (2 projects) Sandwell and West Birmingham NHS Trust

3 Counties Cancer Network (Gloucestershire, Great Westerns Hospital NHS Foundation Trust
Herefordshire & Worcestershire)
Central South Coast Cancer Network
Mount Vernon Cancer Network
Hull and East Yorkshire Hospitals NHS Trust
Luton PCT
Hammersmith Hospital (Imperial College)
North Trent Cancer Network NHS Trust

The Christie NHS Foundation Trust Musgrove Park Hospital NHS Trust

The Royal Free London NHS
Foundation Trust

Pan Birmingham Cancer Network

North Bristol NHS Trust

The Royal Bournemouth and Christchrch
Hospitals NHS Foundation Trust

8


In 2011, eight teams developed and
piloted the whole pathways of care with
clinical teams undertaking one or more
tumour projects. Stratified pathways were
developed and tested by teams in four
tumour types; breast, colorectal, lung and
prostate. The two enabling projects were
remote monitoring and care coordination.
The work is shown pictorially below with
a map of the test sites.

Figure 2

Adult Pilot Sites -
4 Tumour 8 Test 2011/12
Workstreams Communities 1 Hull and East Yorkshire
Hospitals NHS Trust
2 Salford Royal NHS
Foundation Trust
1
3 Ipswich Hospital NHS Trust
NHS Improvement 2
4 Luton and Dunstable Hospital
Testing NHS Foundation Trust
5 North Bristol Hospital
NHS Trust
6 Guy’s & St Thomas’ NHS
2 Enabling 14 Tumour Foundation Trust 3
Projects Projects 7 Hillingdon Hospital NHS Trust 4
8 Brighton and Sussex University
Hospitals NHS Trust 6 7
5

8

9


The model of care, on which the stratified
pathways of care are based, has been
adapted from the long term conditions
model and is shown in the figure 3 below:

Figure 3

Regardless of whether individuals have This should take account of the disease,
been treated with curative or palliative the treatment and its effects, and the
intent, the same model should apply with individual’s personal circumstances.
stratification into an appropriate level of Patients will move between the different
care. levels of care as needs and degree of
dependency change.

10


The testing hypothesis was that through Factors affecting ease of data collection
risk stratifying into appropriate level(s) of and reliability were:
care there would be:
• The absence of coding within
• An improvement in the experience and outpatients activity - patients with a
patient reported outcomes of care from cancer diagnosis had to be identified by
baseline clinic staff and manually recorded, or
• A 50% reduction in outpatient assumptions needed to be made.
attendances from the traditional model • Cancer patients are often seen in
• A 10% reduction in unplanned general clinics (e.g. Urology) spread
admissions from baseline. across multiple locations within Trusts
rather than cancer specific clinics.
From the testing how did we do with our • Little or no tracking, paper based or
testing hypothesis? electronic, of patients followed up in
multiple Trusts, e.g. tertiary specialist
A proof of principle has been established centres, DGH, primary care.
that risk stratification is achievable and • The term ‘follow up’, in data definition,
that remote monitoring is an appropriate includes all appointments following a
way of managing patients treated with new patient appointment. Patients may
curative intent with their cancer in have several ‘follow up’ appointments
remission as an alternative to face-to-face before diagnosis and treatment takes
consultation. place. For this programme of work, we
needed to collect data on follow up
Most sites have stratified significant patients where initial treatment has
numbers of patients on to self-managed been completed.
pathways and data has been collected on • A few sites achieved limited roll out of
these and reported within each work new pathway within their team. For
stream chapter. Where monthly data example in one site it was just the
collection proved impossible to collect a oncology team not the surgical follow
number of sites opted to undertake a one ups that were counted.
month audit capturing as many patients • Variation in point of stratifying to self-
as they could and stratifying, even managed pathway. Some patients were
hypothetically, to the most appropriate stratified at the point they became
pathway. Data collection has therefore suitable for a self-managed pathway
been challenging and has been more others were several years into follow up
robust in some sites than others, therefore but could have been released earlier had
the exact numbers of slots released the system been available.
should be seen as an indication rather
than an absolute.

11


For three of the tumour types, i.e. those testing will require data collection to
where the majority have been treated continue in the longer term to ensure the
with curative intent, there is optimism full impact of risk stratified pathways is
that the 50% reduction in outpatient captured.
attendances will be realised and exceeded
though will be dependent on growing There is an assumption that all patients
confidence in a robust remote monitoring will be offered an assessment and care
solution and the reduction in backlog of plan at key points in their pathway and
patients in the current traditional follow that they receive a treatment summary
up system over the next few years. For that is updated and communicated after
lung cancer patients there was not a each phase of treatment is completed.
marked reduction in outpatient With the patient’s consent these should
attendances though improvements in both be shared with those providing or
processes and access offered patients supporting care delivery. However the
more choice over when their reality in practice is that there has been
appointments were scheduled. limited implementation of assessment and
care planning. This difficulty has been due
With regard to reducing unplanned to what appears to be a new service
admissions, this was not proven in being implemented within current
prostate, breast nor colorectal cancer. resource constraints.
However there was a reduction of
between 6-8% in the number of There is therefore a need to review
emergency admissions for lung cancer existing job plans which will include
patients, and in one site also a reduction shifting resources around the system
in length of stay following an unplanned within the available financial envelope.
admission. Evidence will be required to show the
benefit to patients through positive
We do not yet know the outcome of experience and improved reported
whether there has been an improvement outcomes of care against the baseline.
in the experience or reported outcomes of Assessing and planning for survivorship
care but we are aware though the test care should begin at diagnosis and
sites of encouraging comments of reviewed subsequently at key points in
patients and professionals during the the pathway which will include the end of
testing process. treatment, when stratified to appropriate
aftercare pathway or when an event
Given the lengthening time that people occurs that changes the management
are now living following a cancer plan. Commissioning a bundle of care in
diagnosis it is a given that evidence will the future where components are
accrue over time. This current phase of specified within a contract may resolve
come of the resource constraint issues.

12


A generic pathway for those living with
and beyond cancer has been developed
and is shown below and forms the basis
for our tumour specific pathways:

Figure 4: Stratified Pathway of Care - Generic
RECURRENCE/SYMPTOMS/ABNORMAL TESTS

TIMELY RE-ACCESS

SUPPORTED SELF MANAGEMENT REMOTE MONITORING

CONSULTANT LED
MDT

PROFESSIONAL LED FOLLOW UP NURSE SPECIALIST LED

TELEPHONE LED
TREATMENT CLINICAl
DIAGNOSIS TREATMENT
(CURATIVE/PALLIATIVE) REVIEW SUPPORTIVE AND PALLIATIVE CARE PRIMARY CARE LED
DECISION
First line and/or
subsequent

PSYCHOLOGICAL
TRANSITION TO END OF LIFE CARE

MDT CONTINENCE/STOMA

PHYSIOTHERAPY/OCCUPATIONAL THERAPY

CLINICAL
NEEDS REVIEW DIET & NUTRITION
SUPPORT
ASSESSMENT CARE PLAN
SERVICES
SEXUAL ISSUES
NEEDS WRITTEN +
ASSESSMENT CARE PLAN
LYMPHOEDEMA
TREATMENT
SUMMARY
SELF MANAGEMENT PROGRAMMES

EDUCATION &
CLINICAL INFORMATION INFORMATION/EDUCATION DAYS
SUPPORT
SERVICES
INFORMATION PRESCRIPTIONS

LOCAL AUTHORITY, COMMUNITY OR
PHYSICAL PRIVATELY LED EXERCISE SCHEMES
EDUCATION & ACTIVITY
INFORMATION
TRUST LED EXERCISE PROGRAMMES

OTHER REABLEMENT/SOCIAL CARE
OTHER SUPPORT
SUPPORT SERVICES
SERVICES FINANCE AND BENEFITS

VOCATIONAL REHABILITATION

COMPLEMENTARY THERAPIES

VOLUNTARY SECTOR/SUPPORT GROUPS

13


There will be support elements of the
pathways which are unique to individual Key learning from teams on
tumour types and other elements which implementing the pathways:
are general. That being said there may • Ensure there is full clinical
need to be investment in training and engagement and executive
supervision of health care professionals in support for pathway changes
the assessment of patients moving from even where follow up services
recovery to sustaining that recovery are largely nurse led.
through a focus on remote monitoring • Understand current follow up
and promoting health and wellbeing. pathway before starting to
implement changes.
• Define and agree baseline
measures for improvement as
Key elements to support soon as possible.
self-management: • Engage with patients – they will
• Information and education tell you what it is like!
appropriate to the individuals • Involve the wider team for
needs. example allied health
• Key contacts for care/support in professionals in developing the
and out of hours for cancer and pathway.
non-cancer related problems. • Review job plans to allow
• Efficient and reliable processes sufficient time for the health
for re-accessing the system, if needs assessments.
required. • Be ready to provide training to
• Effective remote monitoring as those who identify a need – not
appropriate. everyone will have the skills and
capability from the start.
• Visit other teams in order to
adopt and adapt their
paperwork and processes.
• Start small and increase scope as
learning and confidence
increases.
• Use the key charities and those
outside health such as local
authority and voluntary sector –
they have much to offer in
relation to support.

14

RECURRENCE
/SYMPTOMS/
ABNORMAL TE
STS

SUPPORTED TIMELY RE-A
SELF MANAG CCESS
EMENT

REMOTE MO
NITORING

PROFESSION CONSULTANT
AL LED FOLL LE D

CLINICAl
Remote monitoring OW UP
NURSE SPECIA
LIST LED
E)
REVIEW
SUPPORTIVE TELEPHONE
AND PALLIATI LED
VE CARE
Context and background
PRIMARY
There are many examples of how use of IT technology can improve the patientCARE LED
experience
MDT and reduce follow TIO and END OF
TRANSIup N
TO associated costs. For those with long term conditions the
LIFE CARE
provision of telehealth equipment such as pulse oximetry, glucometers, PSYCHOLOGICAL
blood pressure
meters, is supported by e technology to transfer results to the professional is becoming
more popular and enables care closer to home. The use and scope of CONTINENCE/Smedicine is
telehealth TOMA
growing rapidly and likely to have greater impact in future. PHYSIO
NEEDS
ASSESSMENT THERAPY/OC
REVIEW CLINICAL CUPATIONAL
THERAPY
CARE PLAN
SUPPORT
SERVICES
+
During the Rapid Review of follow up DIET & NUTR
ITION
practice (2010), a few excellent examples
SEXUAL ISSU
TREATMENfound of where remote monitoring
were T ES
SUMMARY have been introduced successfully
systems
LYMPHOEDEM
within cancer services but practice was A

INICAL not widespread. In others, we found there
SELF MANAG
PPORT had been great interest in RM but EDUCATION & EMENT PROGR
AMMES
RVICES
progress hampered by either local ITINFORMATION
INFORMATIO
architecture, IT development time, lack of N/EDUCATIO
N DAYS
full multidisciplinary teams (MDT) support
INFORMATIO
ATION & or concerns around financial loss resulting N PRESCRIPTI
ONS
MATION from reduced outpatient activity. Of the
PHYSICAL LOCAL AUTH
monitoring systems identified some were ITY
ACTIV O
PRIVATELY LE RITY, COMMUNITY OR
D EXERCISE SC
built into existing IT systems, others as HEMES

standalone databases but none were TRUST LED EX
ER ERCISE PROGR
ORT found to interface with all the relevant AMMES
CES OTH
Trust IT systems therefore necessitating ER
SUPPORT REABLEMEN
T/SOCIAL CA
manual entry of data and consequentRVICES
SE risk RE
of transcription errors. Standalone FINANCE AN
D BENEFITS
systems are not always supported by local
IT teams. VOCATIONA
L REHA BILITATION

COMPLEMEN
TARY THERAP
IES

VOLUNTARY
SECTOR/SUPP
ORT GROUPS

15


The approach agreed within this project Consideration was given as to whether
was to design a RM system that allowed RM should be primary or specialist care
the cancer specialist to continue to based. For the following reasons the latter
schedule and monitor simple tumour was agreed:
marker and other routine tests without
the need for associated face to face • On site remote monitoring systems
follow up appointments. Results are read should allow interface with cancer
by the specialist team and any signs of information and all other diagnostic
recurrence rapidly picked up by the systems.
specialist and referred to the MDT for • More patients are likely to be suitable
advice if required. Remote monitoring in for being remote monitoring if results
this context has little or no impact on are reviewed by the specialist.
primary care demand. • Signs of recurrence can be investigated
and addressed rapidly by the specialist
The NCSI through NHS Improvement team without the need for referral.
sponsored the development of two • Patients defaulting on tests will be
remote monitoring modules, for prostate followed up rapidly. GP systems
and colorectal cancer patients. This was generally have good scheduling systems
done in partnership with North Bristol but not all have systems that track
NHS Trust (NBT) and Royal United defaults.
Hospitals Bath NHS Trust (RUH). The • Further treatment can be initiated
functional requirements for both modules rapidly i.e. changes to hormone therapy.
were developed by the project team (see • Many patients prefer to remain under
appendix 1). The module design was the care of their cancer team especially
based on the PSA tracker solution which following long and complex treatment
originated in the urology department at and they know the team well.
RUH. Both modules draw demographic • Not all GPs are aware of the
and cancer specific information and test implications to changes in test results
results from local IT systems. The modules and this can lead to delayed action or
store a series of standard letters to enable unnecessary referrals. This perception
rapid dissemination of results. The has led to reluctance by some specialists
modules were developed during to release patients to primary care in the
spring/summer 2011, released for testing past.
in July and August and made available to
Trust teams to implement soon after.

16


Testing remote monitoring Progress and learning will continue to be
within test sites monitored across all the sites and an
evaluation of the patient experience of
At the start of the programme all test being remotely monitored will be included
sites were given the option to either: in the repeat Ipsos MORI survey in 2013.

Option 1 Implementation of all solutions has taken
Develop an in house remote monitoring much longer than expected and much
system. learning has been generated during this
learning phase
Option 2
Use the NCSI solution for either prostate, Main issues:
colorectal or both. • IT resources – resources within all Trusts
were limited with all having demanding
Option 3 workload commitments that took
Use an external solution. higher priority than this project, e.g.
Trust information governance
All breast sites have implemented local requirements, several sites were
RM systems for mammography with the undergoing major IT system upgrades,
exception of Hull team who have utilised one had had workforce numbers
NBSS system (see below) for this. One site reduced and had difficulty appointing
has yet to resolve a process issue an IT project lead.
regarding responsibility for reviewing • System implementation – details around
results and issuing of the reports to implementation for the NHS
patients. Improvement solution were unavailable
until late summer and this led to poor
All but one of the six prostate sites understanding of the IT requirements
(including the two associate sites at St and the benefits of the change until late
Georges and Royal United Hospital Bath) into the project.
opted to use the NCSI sponsored solution. • Two organisations required formal
To date four have installed the NSCI business case approval before
solution and the remaining one aims to implementation process could be
go live within the next 1-2 months. started.
• The IT development team at NBT, who
Of the three colorectal sites, Guys and St were supporting installation and IT
Thomas’ and Salford opted to develop support to sites, were also undergoing
their own in house solution and both of major system changes. This led to delays
these are on schedule to go live spring in access advice and this reduced
2012. NBT implemented the NCSI solution momentum in sites.
in April 2012.

17


This work has highlighted the need to Results
ensure that the costs associated with From the patients perspective there has
managing patients remotely are discussed been overwhelming support for this
as part of service commissioning. Any model of care. In at least three sites
savings generated through reduced groups of patients have be asked for their
outpatient clinics need to be off set views and they said that as long as they
against the time and resources to support are informed, can have access to the
this system. In Bath the clinical nurse specialist if they are worried and know
specialist (CNS) has identified a need for that they are still ‘being kept an eye on‘
one CNS led session per week to support by their specialist team this model of care
about 750 patients on remote will work well for them.
monitoring.
We have only just started to see the
Other sites have opted for additional impact but already know that over a
administrative support to the CNS. As well period of six months and across the
as sending reminder letters to those who test sites of over 3,400 prospective
have defaulted they can also print and appointment slots within prostate
arrange postage of result letters and and colorectal cancer will or could be
triage enquiries to the dedicated patient released as a result of using remote
helpline. monitoring systems. Though this robust
monitoring system those ‘lost’ to follow
up should be greatly reduced. As practice
embeds and confidence in this form of
monitoring increases, there is expected to
“Its better on both sides as be a steady rise in those enrolled to this
model as those in current follow up are
it saves time for everyone, transferred. After this, referrals are
expected to plateau with patients
and we don’t have to keep transferred when clinician and patient feel
the time is right.
coming up to the hospital” .
Patient

18


Key learning and top tips baseline of activity carefully when
Thanks go particularly to the team at St setting the urology SLA. It is suggested
Georges for their full evaluation report that in year one the number of
and feedback following implementation adjustment of new to follow up ratios is
of the NCSI prostate module. agreed unless the Trust is confident it
can deliver clinically and technically.
• The project focus needs to be around • Beware of local geography and
providing a service with which patients processing of samples. The NCSI
and professionals should feel solution requires the PSA sample to be
comfortable and that they feel improves processed within the local pathology
the quality and effectiveness of care. It unit and recorded on the lab system for
should not be seen as a cost cutting extract to the monitoring tool. Patients
exercise. living on the periphery of the catchment
• Project depends heavily on clinical area may have their phlebotomy
involvement which can be an issue if samples measured elsewhere. This may
workload is extremely heavy. Clinical limit the scope of the tool and has the
leadership, time and enthusiasm are key potential to create a postcode selection
levers to success. of which patients can be enrolled on the
• Patient representation is essential for system. This may raise further issues as
success and to challenge the team if pathology services are centralised to
patient interests are not being fully major hubs.
considered. Patients need to feel totally • Different laboratories may have different
reassured if they are being asked to methods of analysing the test which
move to a new system of follow up. means results can be misleading if
• Stratified pathways can be introduced in compared one against another. Best to
advance of the IT solution being in place be consistent if possible with samples
or the full system integration being processed with the same kit on each
complete. The module can run as a occasion.
standalone database or using simple
locally held spreadsheets held on the Recommendations and top tips
Trust shared drive. • Baseline data - Ensure you have good
• Early discussion should take place with baseline measures in place on current
commissioners on the benefits and clinic and follow up numbers that you
additional improvements that the RM can use to show improvements. Only
system will bring for patients and how then will you be able to judge what
for GPs it also reduces the need for difference the system has made.
patients to see them. This encourages
them to work with the Trust to properly
fund follow up pathways. Consider the

19


• Project management – Plan the • Phlebotomy services - Meet early with
project well – spend time considering primary care colleagues to discuss
the requirements, responsibilities and implications relating to phlebotomy
timescales and consider the risks and demand. Contracts relating to
how you might mitigate against these. phlebotomy services vary with some GPs
• Project team - ensure you have a funded to provide a service for GP
strong clinical lead who will be able to related requests only whilst others
motivate peers and who is prepared to funded to also cover hospital generated
devote sufficient time to the project requests.
activities. Ensure you have a good IT • Results – Aim for consistency over time
manager on the team who has the using same analytic method for all test
knowledge and authority to resolve IT results which will give an accurate
issues that arise. trend. Where this is not possible, due to
• Ensure sufficient resources are different analysis machine, lab results
available to support the project and need to be given a corrected value so
implementation. The suggested they are consistent in the trend analysis.
resources from one site included
suggested 20 days dedicated IT time, Other items to note:
project management one day per week • CSV file extracts are available from
for six months. North Bristol Trust to enable interface
• Engage with stakeholders – patient between the Somerset Cancer Registry
and GP representatives on the group System and the NCSI solution. A similar
ensure that their interests are extract is available to provide the
considered at every stage. interface with the InfoFlex clinical
• Communicate the project within the information system. Specific
Trust – keeping fellow clinicians, functionality has recently been
colleagues and patients in the loop can introduced to the Infoflex system which
help sell the benefits and raise will be available to those Trusts using
awareness of what the Trust is trying to InfoFlex.
achieve. • Teams should ensure governance
procedures such as standard operating
procedures are in place to support the
remote monitoring systems.

20


The National Breast Screening Programme
service uses the National Breast Screening
System (NBSS) within 95 breast screening
units across England. A defined
population of eligible women (aged 47 to
70) are invited, through their GP
practices, for mammography screening.
Women are invited to a local screening
unit, which can be hospital based, mobile,
or permanently based in another
convenient location such as a shopping
centre. The NBSS system is run
independently of other hospital systems
other than to interface with PACS for the
generation of reports.

In December 2011, the NHS Cancer In Ipswich, a referral form is completed at
Screening Programme (NHSCSP) board the post surgery MDT and returned to the
agreed to extend the use of the NBSS breast screening unit who book the
system to non-screening sites allowing patient into a mammography follow up
use of parallel module of the NBSS system clinic on the hospital PAS system. A letter
to schedule and monitor mammography inviting the patient is sent four weeks
for patients who have been treated for before the first test is due and subsequent
cancer. No charge is made for using the appointments made each time the patient
system however organisations are attends. This continues annually for five
expected to fund any additional licenses, years after which women between 47 -70
support and operational resources. years will be transferred to the breast
screening programme and those under 47
Further information on this is available with continue mammograms annually
by contacting Sarah Sellars at: until screening age is reached. All
sarah.sellars@cancerscreening.nhs.uk. mammograms are double read by
screening radiologists and results sent to
Three of the five breast sites (Ipswich, the patients via a standardised letter
Bristol, Hillingdon) already had in house generated from PAS and copied to the
systems established for managing annual specialist and the GP. If a radiological
mammography. abnormality is reported the case is
discussed and the patient recalled to the
screening unit for further investigation.

21


In Hull, an automated recall system for
mammograms has been set up using the
NBSS system above and is run by staff
within the Hull and East Yorkshire
Hospitals NHS Trust Breast Unit. The first
patients are now starting to be recalled
through this system.

Next steps
Discussions are taking place with other
system suppliers to explore the potential
to develop integral monitoring
functionality to avoid some of the
difficulties associated with interfacing the
systems.

Learning from this work is still on-going.
For new sites the following documents
may be useful:
• Sample business case for remote
monitoring.
• Example ‘Standard Operating
Procedure.’
• Introductory letters for patients and GP.
• Case study report – St Georges Hospital.
• Implementation guide – prostate and
colorectal modules.
• To see dummy version of the NCSI
modules visit:
www.westbrookprojects.com/crm/
Login.aspx user name: tracking,
password: tracking.

22

RECURRENCE
/SYMPTOMS/
ABNORMAL TE
STS

SELF MANAG CCESS
EMENT

REMOTE MO
NITORING

AL LED FOLL LE D

CLINICAl
Care coordination OW UP
NURSE SPECIA
LIST LED
E)
REVIEW
AND PALLIATI LED
VE CARE
Care coordination is the seamless experience of care which encompasses information and
PRIM
communication between patients, their carers and providers, and between ARY CARE LED
those providing
MDT services across
TRthe whole patient pathway. It is therefore a function to ensure that as far as
ANSITION TO
END OF LIFE
CARE PSYCHOLOGI
possible those who will be working in partnership with patients have access to appropriateCAL
information (with the patients consent) to provide an effective service. Care coordination is
CONTINENCE
not one person’s role, job or responsibility. It is the joining up of services, coordinating
/STOMA
information and communication between patients their carers and professionals to ensure
NEEDS PHYSIOTHER
ASSESSMreceive or can access services whenCL
REVIEW APY/OCCUPA
they ENT CARE
they AL
INIC need them. TIONAL THER
APY
PLAN SUPPORT
SERVICES
+
An evaluation was commissioned through
DIET & NUTR
ITION

Ipsos MORI and has recently been SEXUAL ISSU
TREATMENT ES
completed. The purpose of the evaluation
SUMMARY
was to find out find out from patients and LYMPHOEDEM
A
professionals what their experiences and
INICAL
PPORT
expectations of care coordinate are. A SELF MANAG
EMENT PROGR
ED
RVICES summary of this qualitative survey can UCATION &
be
INFORMATIO
AMMES
N
found in the evaluation section of this INFORMATIO
N/EDUCATIO
N DAYS
report.
INFORMATIO
ATION & N PRESCRIPTI
ONS
MATION The guiding principles of care
coordination are: PHYSICAL LOCAL AUTH
ACTIV O
PRIVATELY LE RITY, COMMUNITY OR
• Good communication and professional ITY D EXERCISE SC
HEMES
relationships, formal and informal,
TRUST LED EX
ER between the patient, their carer/family ERCISE PROGR
AMMES
ORT
CES and the care or support team. OTHER
• Proactive and prompt access and SUPPORT REABLEMEN
T/SOCIAL CA
SERVICES RE
intervention when needed.
• Appropriate provision of correct FINANCE AN
D BENEFITS
information to enable individual choice
VOCATIONA
and control. L REHA BILITATION
• Proactive monitoring as necessary
COMPLEMEN
(remote monitoring where possible). TARY THERAP
IES

VOLUNTARY
SECTOR/SUPP
ORT GROUPS

23


• Transition of care along the pathway information and advice they receive. To
should appear seamless to the person overcome this skills deficit, training was
receiving the care. arranged through the assessment and
• Provision of correct information for care planning project lead to provide
healthcare professionals to support CNS’s with skills around motivational
effective patient management in the interviewing, and use of the assessment
event of care delivery away from their tools. All of the test sites took up the
usual care team e.g. hand held record. offer of training in motivational
interviewing (working with patients to set
The key areas of care coordination goals to help enable self-management),
addressed during this phase have been: with several sites taking up the offer of
• Assessment and care planning including assessment skills training with particular
treatment summaries. focus on managing distress.
• Information, education and advice.
• Self-management and timely re-access. Challenges arose where CNS’s in
• Working across care sectors and particular were required to undertake a
organisations. more structured form of assessment and
care planning at the end of treatment
Assessment and care planning where this may have been the first time a
including treatment summaries formal holistic assessment and care
planning session with the patient
NHS Improvement has worked with the happened. There was also the potential
NCSI project manager leading on for inequity where CNS’s were unable to
assessment and care planning to ensure see all patients and to offer them support
that there was cohesion between the at the key areas of the pathway. A way to
development and application of the reduce the resource demand at the end of
different tools. The key areas of focus treatment is to undertake an assessment
were to test in practice the assessment and commence the written care plan at
and care planning tools and the use of a diagnosis, update during treatment and
treatment record summary. review it at the end of treatment or at key
stages when changes in the patients
There were a number of clinical condition occurs, or the management
professionals who felt that their current plan changes.
skill-set had not prepared them for the
change in the conversation or in use of The Distress Thermometer was chosen as
the assessment tools; moving from the the self-assessment tool of choice that
patient as a passive recipient to one who would inform the assessment needs
identifies their own needs and makes discussion with the patient. Following
choices and takes control of managing patient feedback and the perceived
their own health based on the negativity of the word distress, a number

24


of sites supported the redesign of the tool The uptake on the information days was
as a ‘Concerns Checklist’ or similar. The between 30-50% of those invited.
use of self-assessment by patients has Evaluation of why people didn’t attend
raised awareness of patient need and was that they didn’t feed they needed it,
provides the framework for discussion or the timing was inconvenient. Some of
and resolving the concerns raised. those who attended the information days
went on to attend one of the courses.
The treatment summary gives information
on diagnosis, treatment, the clinical The information days in Ipswich have
management plan and includes signs and proved popular for those reluctant to
symptoms to look out for. (The care plan undertake the ‘moving on’ course.
may be integrated into the document or However some of those attending the
may be a separate document) information day went on to attend the
The impending launch of electronic ‘moving on’ course. The moving on
versions of the treatment summary within course runs weekly with 12 places on
the Somerset and InfoFlex systems should each course. The course runs for four
help the completion of these by the weeks with a two and a half hour
clinical teams. commitment a week. The course includes,
self-management strategies, goal setting
INFORMATION/EDUCATION DAYS and many of the common issues and
concerns raised by cancer patients
The focus of this work has been on following initial treatment and longer tem
providing information, education advice concerns.
and support to enable patients to build
skills and gain the confidence to self-
manage with support. This can be
delivered by a variety of methods and the
chosen method of delivery will depend on “I didn’t think I needed any
individual patient needs. These include
1:1 discussions, information prescriptions
more information, how wrong
and booklets, group information sessions,
health and wellbeing clinics, and courses.
I was. I had my head in the
sand. Now I feel confident to
In Bristol there were a number of
approaches ranging from ½ day ‘living take charge and know where
well’ information days, self-management
courses taking a cognitive behavioural to get help if I need it.”
therapy (CBT) approach, residential living
well courses in partnership with Penny Patient
Brohn Cancer Care.

25


“The most surprising and pleasing thing about
this project was discovering what facilities
already existed in the community and that by
exploring these and networking with providers
we could greatly enhance our service simply by
being aware of existing external services and
using them properly.”
Healthcare Professional

Working across care sectors and This is where patients who have a written
organisations record of their diagnosis, treatment and
Building relationships and networks is future plan within a hand or electronic
crucial to improving care coordination – record is helpful in avoiding duplication of
not just within the NHS, but beyond to effort and the patient or carer can supply
social care, charities, community care the context behind the written record.
providers and other agencies that meet This will help to facilitate efficient
the needs of individuals. As has been transfers of care throughout the pathway,
reflected back to us during this testing wherever they occur, whether to
phase it is the quality of the vocational rehabilitation, physiotherapy,
conversation/discussion between voluntary services, social care, or end of
professionals and patients/carers and life care.
between professionals in different settings
that reap greater benefit than checklists
or paper as understanding comes from
the context rather than just the written
record.

26

RECURRENCE
/SYMPTOMS/
ABNORMAL TE
STS

SELF MANAG CCESS
EMENT

REMOTE MO
NITORING

AL LED FOLL LE D

CLINICAl
Evaluation OW UP
NURSE SPECIA
LIST LED
E)
REVIEW
AND PALLIATI LED
VE CARE
Evaluation findings from patient survey on follow up costs
PRIM
A prospective patient survey was carried out in 12 organisations during theARY CARE LEof
summer D
MDT 2010. The purpose of the END OF was to understand the non-healthcare economic cost to
TRANSITION
TO survey LI
FE CARE PSYCHOLOadults
those attending outpatient visits. There were 837 returned questionnaires from GICAL
attending outpatient appointments following treatment for either prostate, breast,
CONTINENCE
colorectal or head and neck cancer. /STOMA

NEEDS PHYSIOTHER
ASSESSMENT REVIEW APY/OCCUPA
CL TION AL
The key findings from the N
CARE PLA survey were: SUINICA• 38% of
L
PPORT
respondents reported being THERAPY
• The average non-healthcare economicSERVICES seen by another healthcareNUTRITIO
DIET & practitioner
+ of a single clinic visit ranged from
cost since their previous clinic, although
N

£21 to £54 across the hospitals
TREATMENT
again some of these consultations will
SEXUAL ISSU
ES
surveyed, mostly driven by time taken
SUMMARY be unrelated to cancer. The percentage
off work. The overall average was £41. varied from 29% to 55% across A
LYMPHOEDEM

INICAL
• These average costs ranged from £227 hospitals.
SELF MAN
PPORT to £857 when calculated for all clinicUCA
ED • 23% of respondents AGEMENT PROGRAM
reported attending
RVICES TION & MES
visits over five years. The overall average ATION another (potentially unrelated) specialist
INFORM
IN
was £437. clinic since theirFORMATION/appointment,
previous EDUCATION DA
YS
• 24% of respondents reported new varying from 16% to 29% across
INFORMATIO
ATION & symptoms that they had not yet hospitals. N PRESCRIPTI
ONS
MATION discussed, with higher percentages in • Most patients travelled by car to their
PHYSICA
prostate and colorectal, and some ACTIVITYL appointment, CAATAUthe RITY, COMMUNIT
LO L
PRIV ELY LE notable
with THO
D EXERCISE SC Y OR
lower percentages in breast. exception of Guy’s and St. Thomas’MES HE
• 71% of respondents had seen their GP where 87% of patients used public
TRUST LED EX
ER ERCISE PROGR
ORT at least once since their previous transport. Journey times were half an AMMES
CES appointment, although some of these OTHER hour on average, ranging from 15
SUPPORT REABLEMEN
GP visits will be unrelated to cancer.RVICES
The T/SOCIAL CA
minutes to 51 minutes across hospitals.
SE RE
average number of GP visits varied from • Only a small number of patients
FINANCE AN
1.8 to 4.2 across the hospitals surveyed, D BENEFI stressful,
reported that their journey wasTS
equivalent to an economic cost of £65 leading to an average score of 2 (where
VOCATIONA
L REHA LITA
to £148 (overall average: 2.7 visits with 1 is least stressful and 10 isBImostON TI
an economic cost of £95). stressful). COM
PLEMENTARY
THERAPIES

VOLUNTARY
SECTOR/SUPP
ORT GROUPS

27


• Waiting room times varied significantly
between hospitals, with averages of
between 16 minutes and one hour and
an overall average of half an hour.
• Taking into account days off work taken
by both the patient and those
accompanying them, each appointment
is associated with around one quarter of
a day off work. At the average wage
rate, this is equivalent to an economic
cost of £25.
• Few patients reported the overall stress
of their visit to be high, leading to an
average score of around 3 (where 1 is
least stressful and 10 is most stressful).

28


Test site baseline quantitative and qualitative
evaluation of aftercare service provision for patients
with breast, colorectal or prostate cancers
The evaluation consisted of two elements:

• A quantitative baseline survey to • A qualitative and in-depth study to
collect robust data on patient explore patients’ experiences of care
experience and reported outcome coordination and understand their
of care and support. personal journey along the new risk
The full report can be found at: stratified pathway, as well as staff
www.improvement.nhs.uk/cancer/ perceptions of how this is working. The
survivorship report contains findings from the
qualitative study, focusing on
perceptions and experiences of care
coordination at eight Test Communities
(TCs), who were piloting the new risk
stratified pathways. Interviews were
conducted with patients and staff at
each of the TCs and with four
representatives from national cancer
charities. The report can be found at:
www.improvement.nhs.uk/cancer/
survivorship

29


Quantitative baseline survey on patient experience
and reported outcomes of care and support

SUMMARY REPORT
KEY FINDINGS:
This report presents the findings from the
1. 58% rated their care as very first wave of a service evaluation study
good or excellent. commissioned by NHS Improvement, which
2. 78% felt they had all the aims to provide a baseline for the 11
information advice and support tumour projects within the seven Test
they needed to manage their Communities (TCs) who tested a new
health. model of care which included risk stratified
3. 37% did not feel they had all care pathways in Adult Cancer Survivorship
the information they needed services, as part of the National Cancer
to identify signs and symptoms
Survivorship Initiative.
of recurrence.
4. 83% felt confident to manage
their own health. The research was conducted using a
5. 42% had taken action quantitative methodology. A 12-page
themselves to do more physical postal questionnaire was sent to 1,862
activity. eligible patients across 11 tumour projects
6. Only 12% who had experienced at 7 TCs. A total of 1,301 completed
a fear that cancer will come questionnaires were received back,
back have been able to take representing an adjusted response rate of
action themselves. 70%.
7. Only 5% who have problems
with erectile function have
Overall quality of care
taken action themselves; 45%
who have not taken action Overall, patients were positive about the
continue to have problems. quality of care and services they had
8. 21% patients reported having received, since their initial treatment
a care plan and 84% of those finished. Almost six in ten (59%) rated it as
found it useful. ‘very good’ or ‘excellent’. However, with
9. 77% of patients knew who to the service provided to patients particularly
contact in 'office' hours. 71% important, the six percent of patients who
had contacted a healthcare felt that they had received, at best, a poor
professional.
service should not be overlooked.
10. 38% of patients knew who to
contact out of 'office' hours
another 20% knew how to find
out. Only 14% had had to make
contact.

30

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