SlideShare a Scribd company logo
1 of 56
Download to read offline
NHS
CANCER
                                             NHS Improvement
                                                        Cancer


DIAGNOSTICS




HEART




LUNG          NHS Improvement - Cancer
              Effective follow up: Testing
STROKE
              risk stratified pathways
              May 2011
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
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   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.
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   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
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   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
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   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
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   Enabling projects: Care coordination




     “
     Care coordination is a function
     not an individual.

                                            ”
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   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.
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   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.
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    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.
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   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.
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   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
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   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.
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   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.
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    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
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   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.
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.
Effective follow-up: testing risk stratfied pathways (Cancer)
Effective follow-up: testing risk stratfied pathways (Cancer)
Effective follow-up: testing risk stratfied pathways (Cancer)
Effective follow-up: testing risk stratfied pathways (Cancer)
Effective follow-up: testing risk stratfied pathways (Cancer)
Effective follow-up: testing risk stratfied pathways (Cancer)
Effective follow-up: testing risk stratfied pathways (Cancer)
Effective follow-up: testing risk stratfied pathways (Cancer)
Effective follow-up: testing risk stratfied pathways (Cancer)
Effective follow-up: testing risk stratfied pathways (Cancer)
Effective follow-up: testing risk stratfied pathways (Cancer)
Effective follow-up: testing risk stratfied pathways (Cancer)
Effective follow-up: testing risk stratfied pathways (Cancer)
Effective follow-up: testing risk stratfied pathways (Cancer)
Effective follow-up: testing risk stratfied pathways (Cancer)
Effective follow-up: testing risk stratfied pathways (Cancer)
Effective follow-up: testing risk stratfied pathways (Cancer)
Effective follow-up: testing risk stratfied pathways (Cancer)
Effective follow-up: testing risk stratfied pathways (Cancer)
Effective follow-up: testing risk stratfied pathways (Cancer)
Effective follow-up: testing risk stratfied pathways (Cancer)
Effective follow-up: testing risk stratfied pathways (Cancer)
Effective follow-up: testing risk stratfied pathways (Cancer)
Effective follow-up: testing risk stratfied pathways (Cancer)
Effective follow-up: testing risk stratfied pathways (Cancer)

More Related Content

What's hot

Hourly rounding leadership project
Hourly rounding leadership projectHourly rounding leadership project
Hourly rounding leadership projectLaurie Crane
 
Using functional questionnaires to get medicare compliance
Using functional questionnaires to get medicare complianceUsing functional questionnaires to get medicare compliance
Using functional questionnaires to get medicare complianceCharles Richardson
 
TxPAIN 2008 Annual Report
TxPAIN 2008 Annual ReportTxPAIN 2008 Annual Report
TxPAIN 2008 Annual Reporthpetty78750
 
Evidence based practice share
Evidence based practice shareEvidence based practice share
Evidence based practice sharejoe ong
 
Final ppt
Final pptFinal ppt
Final pptkophelp
 
#MHwomenleaders12_Breakout Session: Building A Strong Women's Care Program
#MHwomenleaders12_Breakout Session: Building A Strong Women's Care Program #MHwomenleaders12_Breakout Session: Building A Strong Women's Care Program
#MHwomenleaders12_Breakout Session: Building A Strong Women's Care Program Modern Healthcare
 
Rischio Radiologico (Ernesto Mola e Giorgio Visentin)
Rischio Radiologico (Ernesto Mola e Giorgio Visentin)Rischio Radiologico (Ernesto Mola e Giorgio Visentin)
Rischio Radiologico (Ernesto Mola e Giorgio Visentin)csermeg
 
Nursing process, nanda i, nic & noc
Nursing process, nanda i, nic & nocNursing process, nanda i, nic & noc
Nursing process, nanda i, nic & nocEjeh andra
 
Technology in the office
Technology in the officeTechnology in the office
Technology in the officecddirks
 
CanWell Program CPAC Presentation 2010
CanWell Program CPAC Presentation 2010CanWell Program CPAC Presentation 2010
CanWell Program CPAC Presentation 2010serediuk
 
Workshop palliative care in hospitals - an overview - 13 januari 2014
Workshop   palliative care in hospitals - an overview - 13 januari 2014Workshop   palliative care in hospitals - an overview - 13 januari 2014
Workshop palliative care in hospitals - an overview - 13 januari 2014mbakrhyta
 

What's hot (20)

Hourly rounding leadership project
Hourly rounding leadership projectHourly rounding leadership project
Hourly rounding leadership project
 
Bhc gpj article
Bhc gpj articleBhc gpj article
Bhc gpj article
 
Using functional questionnaires to get medicare compliance
Using functional questionnaires to get medicare complianceUsing functional questionnaires to get medicare compliance
Using functional questionnaires to get medicare compliance
 
TxPAIN 2008 Annual Report
TxPAIN 2008 Annual ReportTxPAIN 2008 Annual Report
TxPAIN 2008 Annual Report
 
Phc part 2
Phc part 2Phc part 2
Phc part 2
 
Evidence based practice share
Evidence based practice shareEvidence based practice share
Evidence based practice share
 
Final ppt
Final pptFinal ppt
Final ppt
 
PROMs 2.0
PROMs 2.0PROMs 2.0
PROMs 2.0
 
#MHwomenleaders12_Breakout Session: Building A Strong Women's Care Program
#MHwomenleaders12_Breakout Session: Building A Strong Women's Care Program #MHwomenleaders12_Breakout Session: Building A Strong Women's Care Program
#MHwomenleaders12_Breakout Session: Building A Strong Women's Care Program
 
Dcc 2012 slides matching treatments
Dcc 2012 slides matching treatmentsDcc 2012 slides matching treatments
Dcc 2012 slides matching treatments
 
Rischio Radiologico (Ernesto Mola e Giorgio Visentin)
Rischio Radiologico (Ernesto Mola e Giorgio Visentin)Rischio Radiologico (Ernesto Mola e Giorgio Visentin)
Rischio Radiologico (Ernesto Mola e Giorgio Visentin)
 
Toccafondi et al AHFE 2012
Toccafondi et al AHFE 2012Toccafondi et al AHFE 2012
Toccafondi et al AHFE 2012
 
Nursing process, nanda i, nic & noc
Nursing process, nanda i, nic & nocNursing process, nanda i, nic & noc
Nursing process, nanda i, nic & noc
 
Palliative Care 101 Webinar
Palliative Care 101 WebinarPalliative Care 101 Webinar
Palliative Care 101 Webinar
 
nsg diagnosis
nsg diagnosisnsg diagnosis
nsg diagnosis
 
November community calendar of Events
November community calendar of EventsNovember community calendar of Events
November community calendar of Events
 
Technology in the office
Technology in the officeTechnology in the office
Technology in the office
 
CanWell Program CPAC Presentation 2010
CanWell Program CPAC Presentation 2010CanWell Program CPAC Presentation 2010
CanWell Program CPAC Presentation 2010
 
Nursing Process
Nursing ProcessNursing Process
Nursing Process
 
Workshop palliative care in hospitals - an overview - 13 januari 2014
Workshop   palliative care in hospitals - an overview - 13 januari 2014Workshop   palliative care in hospitals - an overview - 13 januari 2014
Workshop palliative care in hospitals - an overview - 13 januari 2014
 

Similar to Effective follow-up: testing risk stratfied pathways (Cancer)

Integrated Cancer Solutions - Cancer Care Pathways
Integrated Cancer Solutions - Cancer Care PathwaysIntegrated Cancer Solutions - Cancer Care Pathways
Integrated Cancer Solutions - Cancer Care PathwaysKirby Ryan, Jr.
 
The challenges of unscheduled care
The challenges of unscheduled careThe challenges of unscheduled care
The challenges of unscheduled careNHS Improvement
 
Managing central venous access devices in cancer patients a practice guidelin...
Managing central venous access devices in cancer patients a practice guidelin...Managing central venous access devices in cancer patients a practice guidelin...
Managing central venous access devices in cancer patients a practice guidelin...Clinica de imagenes
 
From testing to spread: Sharing the knowledge and learning from organisations...
From testing to spread: Sharing the knowledge and learning from organisations...From testing to spread: Sharing the knowledge and learning from organisations...
From testing to spread: Sharing the knowledge and learning from organisations...NHS Improvement
 
Interprofessional Healthcare Teams
Interprofessional Healthcare TeamsInterprofessional Healthcare Teams
Interprofessional Healthcare Teamsgwilly107
 
The winning principles - transforming inpatient care programme for cancer pat...
The winning principles - transforming inpatient care programme for cancer pat...The winning principles - transforming inpatient care programme for cancer pat...
The winning principles - transforming inpatient care programme for cancer pat...NHS Improvement
 
Panel 2: Optimizing Integrated Colorectal Cancer Treatment Planning and Patie...
Panel 2: Optimizing Integrated Colorectal Cancer Treatment Planning and Patie...Panel 2: Optimizing Integrated Colorectal Cancer Treatment Planning and Patie...
Panel 2: Optimizing Integrated Colorectal Cancer Treatment Planning and Patie...Health Sciences North | Horizon Santé Nord
 
What Do You Do As A Nurse Practitioner with Lisa Neuenfeldt
What Do You Do As A Nurse Practitioner with Lisa NeuenfeldtWhat Do You Do As A Nurse Practitioner with Lisa Neuenfeldt
What Do You Do As A Nurse Practitioner with Lisa NeuenfeldtBayRegionalCancerCen
 
Challenges in Shared Medical Decision Making: An Oncologist's Perspective
Challenges in Shared Medical Decision Making: An Oncologist's PerspectiveChallenges in Shared Medical Decision Making: An Oncologist's Perspective
Challenges in Shared Medical Decision Making: An Oncologist's PerspectiveInformed Medical Decisions Foundation
 
CanRehab: Improving the systematic identification, management, and treatment ...
CanRehab: Improving the systematic identification, management, and treatment ...CanRehab: Improving the systematic identification, management, and treatment ...
CanRehab: Improving the systematic identification, management, and treatment ...Canadian Cancer Survivor Network
 
Rapid review of current service provision following cancer treatment
Rapid review of current service provision following cancer treatmentRapid review of current service provision following cancer treatment
Rapid review of current service provision following cancer treatmentNHS Improvement
 
Putting it all together: Personalized care for cancer survivors
Putting it all together: Personalized care for cancer survivors Putting it all together: Personalized care for cancer survivors
Putting it all together: Personalized care for cancer survivors Carevive
 
Marina Lupari: An overview of PARR in practice in Northern Ireland
Marina Lupari: An overview of PARR in practice in Northern IrelandMarina Lupari: An overview of PARR in practice in Northern Ireland
Marina Lupari: An overview of PARR in practice in Northern IrelandNuffield Trust
 
Acma presentation april 2013 4.8.13 sf
Acma presentation april 2013 4.8.13 sfAcma presentation april 2013 4.8.13 sf
Acma presentation april 2013 4.8.13 sfSfarley1
 
Whsrma 2013 grundy singapore april 2013
Whsrma 2013   grundy singapore april 2013Whsrma 2013   grundy singapore april 2013
Whsrma 2013 grundy singapore april 2013Paul Grundy
 
Breakout 1.1 - Dr Kerri Jones
Breakout 1.1 - Dr Kerri JonesBreakout 1.1 - Dr Kerri Jones
Breakout 1.1 - Dr Kerri JonesNHS Improvement
 
Acs0301 Breast Cancer
Acs0301 Breast CancerAcs0301 Breast Cancer
Acs0301 Breast Cancermedbookonline
 

Similar to Effective follow-up: testing risk stratfied pathways (Cancer) (20)

Integrated Cancer Solutions - Cancer Care Pathways
Integrated Cancer Solutions - Cancer Care PathwaysIntegrated Cancer Solutions - Cancer Care Pathways
Integrated Cancer Solutions - Cancer Care Pathways
 
The challenges of unscheduled care
The challenges of unscheduled careThe challenges of unscheduled care
The challenges of unscheduled care
 
Managing central venous access devices in cancer patients a practice guidelin...
Managing central venous access devices in cancer patients a practice guidelin...Managing central venous access devices in cancer patients a practice guidelin...
Managing central venous access devices in cancer patients a practice guidelin...
 
From testing to spread: Sharing the knowledge and learning from organisations...
From testing to spread: Sharing the knowledge and learning from organisations...From testing to spread: Sharing the knowledge and learning from organisations...
From testing to spread: Sharing the knowledge and learning from organisations...
 
Interprofessional Healthcare Teams
Interprofessional Healthcare TeamsInterprofessional Healthcare Teams
Interprofessional Healthcare Teams
 
The winning principles - transforming inpatient care programme for cancer pat...
The winning principles - transforming inpatient care programme for cancer pat...The winning principles - transforming inpatient care programme for cancer pat...
The winning principles - transforming inpatient care programme for cancer pat...
 
Panel 2: Optimizing Integrated Colorectal Cancer Treatment Planning and Patie...
Panel 2: Optimizing Integrated Colorectal Cancer Treatment Planning and Patie...Panel 2: Optimizing Integrated Colorectal Cancer Treatment Planning and Patie...
Panel 2: Optimizing Integrated Colorectal Cancer Treatment Planning and Patie...
 
Artículo seminario 4
Artículo seminario 4Artículo seminario 4
Artículo seminario 4
 
What Do You Do As A Nurse Practitioner with Lisa Neuenfeldt
What Do You Do As A Nurse Practitioner with Lisa NeuenfeldtWhat Do You Do As A Nurse Practitioner with Lisa Neuenfeldt
What Do You Do As A Nurse Practitioner with Lisa Neuenfeldt
 
Challenges in Shared Medical Decision Making: An Oncologist's Perspective
Challenges in Shared Medical Decision Making: An Oncologist's PerspectiveChallenges in Shared Medical Decision Making: An Oncologist's Perspective
Challenges in Shared Medical Decision Making: An Oncologist's Perspective
 
CanRehab: Improving the systematic identification, management, and treatment ...
CanRehab: Improving the systematic identification, management, and treatment ...CanRehab: Improving the systematic identification, management, and treatment ...
CanRehab: Improving the systematic identification, management, and treatment ...
 
Rapid review of current service provision following cancer treatment
Rapid review of current service provision following cancer treatmentRapid review of current service provision following cancer treatment
Rapid review of current service provision following cancer treatment
 
Pain
PainPain
Pain
 
Putting it all together: Personalized care for cancer survivors
Putting it all together: Personalized care for cancer survivors Putting it all together: Personalized care for cancer survivors
Putting it all together: Personalized care for cancer survivors
 
Marina Lupari: An overview of PARR in practice in Northern Ireland
Marina Lupari: An overview of PARR in practice in Northern IrelandMarina Lupari: An overview of PARR in practice in Northern Ireland
Marina Lupari: An overview of PARR in practice in Northern Ireland
 
Cancer imPACT
Cancer imPACTCancer imPACT
Cancer imPACT
 
Acma presentation april 2013 4.8.13 sf
Acma presentation april 2013 4.8.13 sfAcma presentation april 2013 4.8.13 sf
Acma presentation april 2013 4.8.13 sf
 
Whsrma 2013 grundy singapore april 2013
Whsrma 2013   grundy singapore april 2013Whsrma 2013   grundy singapore april 2013
Whsrma 2013 grundy singapore april 2013
 
Breakout 1.1 - Dr Kerri Jones
Breakout 1.1 - Dr Kerri JonesBreakout 1.1 - Dr Kerri Jones
Breakout 1.1 - Dr Kerri Jones
 
Acs0301 Breast Cancer
Acs0301 Breast CancerAcs0301 Breast Cancer
Acs0301 Breast Cancer
 

More from NHS Improvement

PEN Awards Webinar Series 3 of 6
PEN Awards Webinar Series 3 of 6PEN Awards Webinar Series 3 of 6
PEN Awards Webinar Series 3 of 6NHS Improvement
 
Directory of Diagnostic Services for Commissioning Organisations
Directory of Diagnostic Services for Commissioning Organisations Directory of Diagnostic Services for Commissioning Organisations
Directory of Diagnostic Services for Commissioning Organisations NHS Improvement
 
Top tips to overcome the challenge of commissioning diagnostic services
Top tips to overcome the challenge of commissioning diagnostic services Top tips to overcome the challenge of commissioning diagnostic services
Top tips to overcome the challenge of commissioning diagnostic services NHS Improvement
 
Managing exacerbations in chronic obstructive pulmonary disease (COPD): A sec...
Managing exacerbations in chronic obstructive pulmonary disease (COPD): A sec...Managing exacerbations in chronic obstructive pulmonary disease (COPD): A sec...
Managing exacerbations in chronic obstructive pulmonary disease (COPD): A sec...NHS Improvement
 
Managing multi-morbidity in practice… what lessons can be learnt from the car...
Managing multi-morbidity in practice… what lessons can be learnt from the car...Managing multi-morbidity in practice… what lessons can be learnt from the car...
Managing multi-morbidity in practice… what lessons can be learnt from the car...NHS Improvement
 
Improving the quality and safety of home oxygen services: The case for spread
Improving the quality and safety of home oxygen services: The case for spread Improving the quality and safety of home oxygen services: The case for spread
Improving the quality and safety of home oxygen services: The case for spread NHS Improvement
 
Making the case for cardiac rehabilitation: modelling potential impact on re...
Making the case for cardiac rehabilitation:  modelling potential impact on re...Making the case for cardiac rehabilitation:  modelling potential impact on re...
Making the case for cardiac rehabilitation: modelling potential impact on re...NHS Improvement
 
Breakout 4.5 Preventing Oxygen Toxicity: a whole system approach - Prof Tony ...
Breakout 4.5 Preventing Oxygen Toxicity: a whole system approach - Prof Tony ...Breakout 4.5 Preventing Oxygen Toxicity: a whole system approach - Prof Tony ...
Breakout 4.5 Preventing Oxygen Toxicity: a whole system approach - Prof Tony ...NHS Improvement
 
Breakout 4.4 End of Life Care in Respiratory Disease ~ What we did in Solihul...
Breakout 4.4 End of Life Care in Respiratory Disease ~ What we did in Solihul...Breakout 4.4 End of Life Care in Respiratory Disease ~ What we did in Solihul...
Breakout 4.4 End of Life Care in Respiratory Disease ~ What we did in Solihul...NHS Improvement
 
Breakout 4.3 Building a caring future - Liz Norman
Breakout 4.3 Building a caring future - Liz NormanBreakout 4.3 Building a caring future - Liz Norman
Breakout 4.3 Building a caring future - Liz NormanNHS Improvement
 
Breakout 4.3 How to manage… exacerbations of COPD, asthma and… in hospital - ...
Breakout 4.3 How to manage… exacerbations of COPD, asthma and… in hospital - ...Breakout 4.3 How to manage… exacerbations of COPD, asthma and… in hospital - ...
Breakout 4.3 How to manage… exacerbations of COPD, asthma and… in hospital - ...NHS Improvement
 
Breakout 4.2 Optimise not maximise for better value COPD and asthma care - No...
Breakout 4.2 Optimise not maximise for better value COPD and asthma care - No...Breakout 4.2 Optimise not maximise for better value COPD and asthma care - No...
Breakout 4.2 Optimise not maximise for better value COPD and asthma care - No...NHS Improvement
 
Breakout 4. 2 Benefits of implementing medicines optimisation in a COPD and a...
Breakout 4. 2 Benefits of implementing medicines optimisation in a COPD and a...Breakout 4. 2 Benefits of implementing medicines optimisation in a COPD and a...
Breakout 4. 2 Benefits of implementing medicines optimisation in a COPD and a...NHS Improvement
 
Breakout 4.1 Finding the missing millions - David Halpin
Breakout 4.1 Finding the missing millions - David HalpinBreakout 4.1 Finding the missing millions - David Halpin
Breakout 4.1 Finding the missing millions - David HalpinNHS Improvement
 
Breakout 3.5 ‘Dying for a fag’ The hypoxic patient actively smoking – case st...
Breakout 3.5 ‘Dying for a fag’ The hypoxic patient actively smoking – case st...Breakout 3.5 ‘Dying for a fag’ The hypoxic patient actively smoking – case st...
Breakout 3.5 ‘Dying for a fag’ The hypoxic patient actively smoking – case st...NHS Improvement
 
Breakout 3.4 Asthma and psychological problems - Mike Thomas
Breakout 3.4 Asthma and psychological problems - Mike ThomasBreakout 3.4 Asthma and psychological problems - Mike Thomas
Breakout 3.4 Asthma and psychological problems - Mike ThomasNHS Improvement
 
Breakout 3.4 How to support the psychological needs of patients with COPD - K...
Breakout 3.4 How to support the psychological needs of patients with COPD - K...Breakout 3.4 How to support the psychological needs of patients with COPD - K...
Breakout 3.4 How to support the psychological needs of patients with COPD - K...NHS Improvement
 
Breakout 3.3 Achieving Excellence Across Primary & Secondary Care - Sarah Kea...
Breakout 3.3 Achieving Excellence Across Primary & Secondary Care - Sarah Kea...Breakout 3.3 Achieving Excellence Across Primary & Secondary Care - Sarah Kea...
Breakout 3.3 Achieving Excellence Across Primary & Secondary Care - Sarah Kea...NHS Improvement
 
Breakout 3.3 Pro-active management - Stephen Gaduzo
Breakout 3.3 Pro-active management - Stephen GaduzoBreakout 3.3 Pro-active management - Stephen Gaduzo
Breakout 3.3 Pro-active management - Stephen GaduzoNHS Improvement
 
Breakout 3.2 Managing Multimorbidity in Practice - Dr Kevin Gruffydd-Jones
Breakout 3.2 Managing Multimorbidity in Practice - Dr Kevin Gruffydd-JonesBreakout 3.2 Managing Multimorbidity in Practice - Dr Kevin Gruffydd-Jones
Breakout 3.2 Managing Multimorbidity in Practice - Dr Kevin Gruffydd-JonesNHS Improvement
 

More from NHS Improvement (20)

PEN Awards Webinar Series 3 of 6
PEN Awards Webinar Series 3 of 6PEN Awards Webinar Series 3 of 6
PEN Awards Webinar Series 3 of 6
 
Directory of Diagnostic Services for Commissioning Organisations
Directory of Diagnostic Services for Commissioning Organisations Directory of Diagnostic Services for Commissioning Organisations
Directory of Diagnostic Services for Commissioning Organisations
 
Top tips to overcome the challenge of commissioning diagnostic services
Top tips to overcome the challenge of commissioning diagnostic services Top tips to overcome the challenge of commissioning diagnostic services
Top tips to overcome the challenge of commissioning diagnostic services
 
Managing exacerbations in chronic obstructive pulmonary disease (COPD): A sec...
Managing exacerbations in chronic obstructive pulmonary disease (COPD): A sec...Managing exacerbations in chronic obstructive pulmonary disease (COPD): A sec...
Managing exacerbations in chronic obstructive pulmonary disease (COPD): A sec...
 
Managing multi-morbidity in practice… what lessons can be learnt from the car...
Managing multi-morbidity in practice… what lessons can be learnt from the car...Managing multi-morbidity in practice… what lessons can be learnt from the car...
Managing multi-morbidity in practice… what lessons can be learnt from the car...
 
Improving the quality and safety of home oxygen services: The case for spread
Improving the quality and safety of home oxygen services: The case for spread Improving the quality and safety of home oxygen services: The case for spread
Improving the quality and safety of home oxygen services: The case for spread
 
Making the case for cardiac rehabilitation: modelling potential impact on re...
Making the case for cardiac rehabilitation:  modelling potential impact on re...Making the case for cardiac rehabilitation:  modelling potential impact on re...
Making the case for cardiac rehabilitation: modelling potential impact on re...
 
Breakout 4.5 Preventing Oxygen Toxicity: a whole system approach - Prof Tony ...
Breakout 4.5 Preventing Oxygen Toxicity: a whole system approach - Prof Tony ...Breakout 4.5 Preventing Oxygen Toxicity: a whole system approach - Prof Tony ...
Breakout 4.5 Preventing Oxygen Toxicity: a whole system approach - Prof Tony ...
 
Breakout 4.4 End of Life Care in Respiratory Disease ~ What we did in Solihul...
Breakout 4.4 End of Life Care in Respiratory Disease ~ What we did in Solihul...Breakout 4.4 End of Life Care in Respiratory Disease ~ What we did in Solihul...
Breakout 4.4 End of Life Care in Respiratory Disease ~ What we did in Solihul...
 
Breakout 4.3 Building a caring future - Liz Norman
Breakout 4.3 Building a caring future - Liz NormanBreakout 4.3 Building a caring future - Liz Norman
Breakout 4.3 Building a caring future - Liz Norman
 
Breakout 4.3 How to manage… exacerbations of COPD, asthma and… in hospital - ...
Breakout 4.3 How to manage… exacerbations of COPD, asthma and… in hospital - ...Breakout 4.3 How to manage… exacerbations of COPD, asthma and… in hospital - ...
Breakout 4.3 How to manage… exacerbations of COPD, asthma and… in hospital - ...
 
Breakout 4.2 Optimise not maximise for better value COPD and asthma care - No...
Breakout 4.2 Optimise not maximise for better value COPD and asthma care - No...Breakout 4.2 Optimise not maximise for better value COPD and asthma care - No...
Breakout 4.2 Optimise not maximise for better value COPD and asthma care - No...
 
Breakout 4. 2 Benefits of implementing medicines optimisation in a COPD and a...
Breakout 4. 2 Benefits of implementing medicines optimisation in a COPD and a...Breakout 4. 2 Benefits of implementing medicines optimisation in a COPD and a...
Breakout 4. 2 Benefits of implementing medicines optimisation in a COPD and a...
 
Breakout 4.1 Finding the missing millions - David Halpin
Breakout 4.1 Finding the missing millions - David HalpinBreakout 4.1 Finding the missing millions - David Halpin
Breakout 4.1 Finding the missing millions - David Halpin
 
Breakout 3.5 ‘Dying for a fag’ The hypoxic patient actively smoking – case st...
Breakout 3.5 ‘Dying for a fag’ The hypoxic patient actively smoking – case st...Breakout 3.5 ‘Dying for a fag’ The hypoxic patient actively smoking – case st...
Breakout 3.5 ‘Dying for a fag’ The hypoxic patient actively smoking – case st...
 
Breakout 3.4 Asthma and psychological problems - Mike Thomas
Breakout 3.4 Asthma and psychological problems - Mike ThomasBreakout 3.4 Asthma and psychological problems - Mike Thomas
Breakout 3.4 Asthma and psychological problems - Mike Thomas
 
Breakout 3.4 How to support the psychological needs of patients with COPD - K...
Breakout 3.4 How to support the psychological needs of patients with COPD - K...Breakout 3.4 How to support the psychological needs of patients with COPD - K...
Breakout 3.4 How to support the psychological needs of patients with COPD - K...
 
Breakout 3.3 Achieving Excellence Across Primary & Secondary Care - Sarah Kea...
Breakout 3.3 Achieving Excellence Across Primary & Secondary Care - Sarah Kea...Breakout 3.3 Achieving Excellence Across Primary & Secondary Care - Sarah Kea...
Breakout 3.3 Achieving Excellence Across Primary & Secondary Care - Sarah Kea...
 
Breakout 3.3 Pro-active management - Stephen Gaduzo
Breakout 3.3 Pro-active management - Stephen GaduzoBreakout 3.3 Pro-active management - Stephen Gaduzo
Breakout 3.3 Pro-active management - Stephen Gaduzo
 
Breakout 3.2 Managing Multimorbidity in Practice - Dr Kevin Gruffydd-Jones
Breakout 3.2 Managing Multimorbidity in Practice - Dr Kevin Gruffydd-JonesBreakout 3.2 Managing Multimorbidity in Practice - Dr Kevin Gruffydd-Jones
Breakout 3.2 Managing Multimorbidity in Practice - Dr Kevin Gruffydd-Jones
 

Recently uploaded

PAIN/CLASSIFICATION AND MANAGEMENT OF PAIN.pdf
PAIN/CLASSIFICATION AND MANAGEMENT OF PAIN.pdfPAIN/CLASSIFICATION AND MANAGEMENT OF PAIN.pdf
PAIN/CLASSIFICATION AND MANAGEMENT OF PAIN.pdfDolisha Warbi
 
"Radical excision of DIE in subferile women with deep infiltrating endometrio...
"Radical excision of DIE in subferile women with deep infiltrating endometrio..."Radical excision of DIE in subferile women with deep infiltrating endometrio...
"Radical excision of DIE in subferile women with deep infiltrating endometrio...Sujoy Dasgupta
 
Breast cancer -ONCO IN MEDICAL AND SURGICAL NURSING.pptx
Breast cancer -ONCO IN MEDICAL AND SURGICAL NURSING.pptxBreast cancer -ONCO IN MEDICAL AND SURGICAL NURSING.pptx
Breast cancer -ONCO IN MEDICAL AND SURGICAL NURSING.pptxNaveenkumar267201
 
power point presentation of Clinical evaluation of strabismus
power point presentation of Clinical evaluation  of strabismuspower point presentation of Clinical evaluation  of strabismus
power point presentation of Clinical evaluation of strabismusChandrasekar Reddy
 
AORTIC DISSECTION and management of aortic dissection
AORTIC DISSECTION and management of aortic dissectionAORTIC DISSECTION and management of aortic dissection
AORTIC DISSECTION and management of aortic dissectiondrhanifmohdali
 
ANATOMICAL FAETURES OF BONES FOR NURSING STUDENTS .pptx
ANATOMICAL FAETURES OF BONES  FOR NURSING STUDENTS .pptxANATOMICAL FAETURES OF BONES  FOR NURSING STUDENTS .pptx
ANATOMICAL FAETURES OF BONES FOR NURSING STUDENTS .pptxWINCY THIRUMURUGAN
 
MedMatch: Your Health, Our Mission. Pitch deck.
MedMatch: Your Health, Our Mission. Pitch deck.MedMatch: Your Health, Our Mission. Pitch deck.
MedMatch: Your Health, Our Mission. Pitch deck.whalesdesign
 
Generative AI in Health Care a scoping review and a persoanl experience.
Generative AI in Health Care a scoping review and a persoanl experience.Generative AI in Health Care a scoping review and a persoanl experience.
Generative AI in Health Care a scoping review and a persoanl experience.Vaikunthan Rajaratnam
 
Mental health Team. Dr Senthil Thirusangu
Mental health Team. Dr Senthil ThirusanguMental health Team. Dr Senthil Thirusangu
Mental health Team. Dr Senthil Thirusangu Medical University
 
DNA nucleotides Blast in NCBI and Phylogeny using MEGA Xi.pptx
DNA nucleotides Blast in NCBI and Phylogeny using MEGA Xi.pptxDNA nucleotides Blast in NCBI and Phylogeny using MEGA Xi.pptx
DNA nucleotides Blast in NCBI and Phylogeny using MEGA Xi.pptxMAsifAhmad
 
Male Infertility, Antioxidants and Beyond
Male Infertility, Antioxidants and BeyondMale Infertility, Antioxidants and Beyond
Male Infertility, Antioxidants and BeyondSujoy Dasgupta
 
Trustworthiness of AI based predictions Aachen 2024
Trustworthiness of AI based predictions Aachen 2024Trustworthiness of AI based predictions Aachen 2024
Trustworthiness of AI based predictions Aachen 2024EwoutSteyerberg1
 
Different drug regularity bodies in different countries.
Different drug regularity bodies in different countries.Different drug regularity bodies in different countries.
Different drug regularity bodies in different countries.kishan singh tomar
 
Using Data Visualization in Public Health Communications
Using Data Visualization in Public Health CommunicationsUsing Data Visualization in Public Health Communications
Using Data Visualization in Public Health Communicationskatiequigley33
 
blood bank management system project report
blood bank management system project reportblood bank management system project report
blood bank management system project reportNARMADAPETROLEUMGAS
 
historyofpsychiatryinindia. Senthil Thirusangu
historyofpsychiatryinindia. Senthil Thirusanguhistoryofpsychiatryinindia. Senthil Thirusangu
historyofpsychiatryinindia. Senthil Thirusangu Medical University
 
SGK LEUKEMIA KINH DÒNG BẠCH CÂU HẠT HAY.pdf
SGK LEUKEMIA KINH DÒNG BẠCH CÂU HẠT HAY.pdfSGK LEUKEMIA KINH DÒNG BẠCH CÂU HẠT HAY.pdf
SGK LEUKEMIA KINH DÒNG BẠCH CÂU HẠT HAY.pdfHongBiThi1
 
SGK ĐIỆN GIẬT ĐHYHN RẤT LÀ HAY TUYỆT VỜI.pdf
SGK ĐIỆN GIẬT ĐHYHN        RẤT LÀ HAY TUYỆT VỜI.pdfSGK ĐIỆN GIẬT ĐHYHN        RẤT LÀ HAY TUYỆT VỜI.pdf
SGK ĐIỆN GIẬT ĐHYHN RẤT LÀ HAY TUYỆT VỜI.pdfHongBiThi1
 
Clinical Research Informatics Year-in-Review 2024
Clinical Research Informatics Year-in-Review 2024Clinical Research Informatics Year-in-Review 2024
Clinical Research Informatics Year-in-Review 2024Peter Embi
 
High-Performance Thin-Layer Chromatography (HPTLC)
High-Performance Thin-Layer Chromatography (HPTLC)High-Performance Thin-Layer Chromatography (HPTLC)
High-Performance Thin-Layer Chromatography (HPTLC)kishan singh tomar
 

Recently uploaded (20)

PAIN/CLASSIFICATION AND MANAGEMENT OF PAIN.pdf
PAIN/CLASSIFICATION AND MANAGEMENT OF PAIN.pdfPAIN/CLASSIFICATION AND MANAGEMENT OF PAIN.pdf
PAIN/CLASSIFICATION AND MANAGEMENT OF PAIN.pdf
 
"Radical excision of DIE in subferile women with deep infiltrating endometrio...
"Radical excision of DIE in subferile women with deep infiltrating endometrio..."Radical excision of DIE in subferile women with deep infiltrating endometrio...
"Radical excision of DIE in subferile women with deep infiltrating endometrio...
 
Breast cancer -ONCO IN MEDICAL AND SURGICAL NURSING.pptx
Breast cancer -ONCO IN MEDICAL AND SURGICAL NURSING.pptxBreast cancer -ONCO IN MEDICAL AND SURGICAL NURSING.pptx
Breast cancer -ONCO IN MEDICAL AND SURGICAL NURSING.pptx
 
power point presentation of Clinical evaluation of strabismus
power point presentation of Clinical evaluation  of strabismuspower point presentation of Clinical evaluation  of strabismus
power point presentation of Clinical evaluation of strabismus
 
AORTIC DISSECTION and management of aortic dissection
AORTIC DISSECTION and management of aortic dissectionAORTIC DISSECTION and management of aortic dissection
AORTIC DISSECTION and management of aortic dissection
 
ANATOMICAL FAETURES OF BONES FOR NURSING STUDENTS .pptx
ANATOMICAL FAETURES OF BONES  FOR NURSING STUDENTS .pptxANATOMICAL FAETURES OF BONES  FOR NURSING STUDENTS .pptx
ANATOMICAL FAETURES OF BONES FOR NURSING STUDENTS .pptx
 
MedMatch: Your Health, Our Mission. Pitch deck.
MedMatch: Your Health, Our Mission. Pitch deck.MedMatch: Your Health, Our Mission. Pitch deck.
MedMatch: Your Health, Our Mission. Pitch deck.
 
Generative AI in Health Care a scoping review and a persoanl experience.
Generative AI in Health Care a scoping review and a persoanl experience.Generative AI in Health Care a scoping review and a persoanl experience.
Generative AI in Health Care a scoping review and a persoanl experience.
 
Mental health Team. Dr Senthil Thirusangu
Mental health Team. Dr Senthil ThirusanguMental health Team. Dr Senthil Thirusangu
Mental health Team. Dr Senthil Thirusangu
 
DNA nucleotides Blast in NCBI and Phylogeny using MEGA Xi.pptx
DNA nucleotides Blast in NCBI and Phylogeny using MEGA Xi.pptxDNA nucleotides Blast in NCBI and Phylogeny using MEGA Xi.pptx
DNA nucleotides Blast in NCBI and Phylogeny using MEGA Xi.pptx
 
Male Infertility, Antioxidants and Beyond
Male Infertility, Antioxidants and BeyondMale Infertility, Antioxidants and Beyond
Male Infertility, Antioxidants and Beyond
 
Trustworthiness of AI based predictions Aachen 2024
Trustworthiness of AI based predictions Aachen 2024Trustworthiness of AI based predictions Aachen 2024
Trustworthiness of AI based predictions Aachen 2024
 
Different drug regularity bodies in different countries.
Different drug regularity bodies in different countries.Different drug regularity bodies in different countries.
Different drug regularity bodies in different countries.
 
Using Data Visualization in Public Health Communications
Using Data Visualization in Public Health CommunicationsUsing Data Visualization in Public Health Communications
Using Data Visualization in Public Health Communications
 
blood bank management system project report
blood bank management system project reportblood bank management system project report
blood bank management system project report
 
historyofpsychiatryinindia. Senthil Thirusangu
historyofpsychiatryinindia. Senthil Thirusanguhistoryofpsychiatryinindia. Senthil Thirusangu
historyofpsychiatryinindia. Senthil Thirusangu
 
SGK LEUKEMIA KINH DÒNG BẠCH CÂU HẠT HAY.pdf
SGK LEUKEMIA KINH DÒNG BẠCH CÂU HẠT HAY.pdfSGK LEUKEMIA KINH DÒNG BẠCH CÂU HẠT HAY.pdf
SGK LEUKEMIA KINH DÒNG BẠCH CÂU HẠT HAY.pdf
 
SGK ĐIỆN GIẬT ĐHYHN RẤT LÀ HAY TUYỆT VỜI.pdf
SGK ĐIỆN GIẬT ĐHYHN        RẤT LÀ HAY TUYỆT VỜI.pdfSGK ĐIỆN GIẬT ĐHYHN        RẤT LÀ HAY TUYỆT VỜI.pdf
SGK ĐIỆN GIẬT ĐHYHN RẤT LÀ HAY TUYỆT VỜI.pdf
 
Clinical Research Informatics Year-in-Review 2024
Clinical Research Informatics Year-in-Review 2024Clinical Research Informatics Year-in-Review 2024
Clinical Research Informatics Year-in-Review 2024
 
High-Performance Thin-Layer Chromatography (HPTLC)
High-Performance Thin-Layer Chromatography (HPTLC)High-Performance Thin-Layer Chromatography (HPTLC)
High-Performance Thin-Layer Chromatography (HPTLC)
 

Effective follow-up: testing risk stratfied pathways (Cancer)

  • 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.