NHSCANCER                                             NHS Improvement                                                     ...
Complete care pathway for a patient with a diagnosis of cancer                                                            ...
Introduction   3Effective follow up: Testing risk stratified pathwaysIntroductionThe purpose of this document is tohighlig...
4   Introduction    As the incidence and prevalence          • In 2007, a survey of 3,000                 • In March 2008,...
Introduction   5• During summer 2009, a rapid          A UNIQUE PERSPECTIVE...  review of follow up7 care and  support was...
6   Introduction    • In the summer of 2010 clinical     The outcomes from these pieces of      consensus meetings were he...
The hypothesis - testing risk stratified pathways of care        7The hypothesis - testing risk stratifiedpathways of care...
8   The hypothesis – testing risk stratified pathways of care      Model of Care: Living With      and Beyond Cancer    Th...
The hypothesis – testing risk stratified pathways of care   9Risk stratification                     Risk stratification p...
10   The hypothesis – testing risk stratified pathways of care     Measures                                HES data will p...
National Cancer Survivorship Initiative Support Projects    11National Cancer Survivorship InitiativeSupport ProjectsThe N...
12   Enabling projects: Care coordination     “     Care coordination is a function     not an individual.                ...
Enabling projects: Care coordination   13Enabling projects: Care coordinationCare coordination is not oneperson’s role, jo...
14   Enabling projects: Care coordination     Hand held record components            Testing                              ...
Enabling projects: Remote monitoring     15Enabling projects: Remote monitoringBackground                              REQ...
16   Enabling projects: Remote monitoring     Breast cancer                          Model 2 - Off site Breast            ...
Enabling projects: Remote monitoring    17                                                                                ...
18    Breast cancer      Breast cancer      Introduction                                                                  ...
Breast cancer    19Follow up after treatment for           There is variation nationally on the   Various charities are su...
20   Breast cancer     Risk Stratified Breast Cancer Pathway - For Testing                                                ...
Breast cancer   21                                                           Patient                                      ...
22   Breast cancer     “     The National Cancer Survivorship     Initiative seeks to improve     patient experience and  ...
Breast cancer    23Brighton and Sussex University Hospitals NHS Trust  Richard Simcock  Breast Clinical Lead and  Consulta...
24   Breast cancer     North Bristol Hospital NHS Trust       Simon Cawthorn       simon.cawthorn@nbt.nhs.uk       Ajay Sa...
Breast cancer      25The Hillingdon Hospitals NHS Foundation Trust  Amy Guppy  Breast Clinical Lead and  Consultant Clinic...
26   Breast cancer     Hull & East Yorkshire Hospitals NHS Trust      Miss Penny McManus      Breast Clinical Lead and Bre...
Breast cancer   27The Ipswich Hospital NHS Trust                                      “Having already recognised the      ...
28    Colorectal cancer      Colorectal cancer      Introduction                                                          ...
Colorectal cancer   29The management of colorectal           On surveillance tests the recentcancer follow up after treatm...
30   Colorectal cancer     Risk Stratified Colorectal Cancer Pathway - For Testin                                         ...
Colorectal cancer                   31g                                                              Patient              ...
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)
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Effective follow-up: testing risk stratfied pathways (Cancer)

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This document highlights the work being led by NHS Improvement to support the delivery of the National Cancer Survivorship Initiative (NCSI) vision for those living with and beyond cancer. This survivorship agenda is a priority which was outlined in the Cancer Reforms Strategy (2007) and Improving Outcomes: A Strategy For Cancer (2011)
(Published May 2011)

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

  1. 1. NHSCANCER NHS Improvement CancerDIAGNOSTICSHEARTLUNG NHS Improvement - Cancer Effective follow up: TestingSTROKE risk stratified pathways May 2011
  2. 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 CareAssessment 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. 3. Introduction 3Effective follow up: Testing risk stratified pathwaysIntroductionThe purpose of this document is tohighlight the work being led byNHS Improvement to supportdelivery of the National CancerSurvivorship Initiative (NCSI) Vision1for those living with and beyondcancer. This survivorship agenda is apriority which was outlined in theCancer Reform Strategy2 (2007)and Improving Outcomes; aStrategy for Cancer3 (2011).As part of the NCSI, NHS Adam Glaser, Clinical Director, Gilmour Frew, Director - NHSImprovement is working in National Cancer Survivorship Improvementpartnership with patients, clinical Initiativeteams, Department of Health andvoluntary agencies to improve theeffectiveness and quality of service Key emerging principlesdelivery for those living with andbeyond cancer. A key aspect of thisis ensuring effective pathway • Risk stratified pathways for future care and support for thosemanagement across organisational of care based on the tumourboundaries, with the patient at the type, treatment and personalheart of the decision making circumstances of the individual living with and beyond • All patients will be offered cancer:process. a personalised care planTraditionally, the focus of cancer that focuses on their individualservice improvement has been on needs along with a treatment summary for the patient andthe referral to treatment pathway, those involved in their carewith the emphasis post treatment • Information and educationon surveillance and monitoring for that enables choice andfurther disease. Primary care has, in confidence to self manage will be provided at the right time tothe past, seen the management of meet the patient’s individual needscancer patients to be the province • Remote monitoring which provides safe and effective monitoringof the specialist cancer team until at a distance with timely intervention if requiredthey have been discharged to the • Care coordination as a function that ensures that the needs of thecare of their GP. individual are met seamlessly across organisational and clinical service boundaries. All patients will have appropriate timelyThere are estimated to be around access to the right service, first time, when problems arise1.7 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 acrossof 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. 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 patients 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 Frews leadership.
  5. 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. 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. 7. The hypothesis - testing risk stratified pathways of care 7The hypothesis - testing risk stratifiedpathways of careThis phase of testing is taking awhole system approach looking toredesign the pathways of care infour tumour sites with the focuson risk stratification. The resulting Testingmodel of care, when tested, Risk Stratified 3 levelsshould provide early evidence on Pathways of Care of care 13 tumour projects,the benefits of this approach in 7 test sitescompared to the currentwidespread traditional model of Provision ofcare. This is in keeping with Assessmentcurrent policy of care closer to and Care Planshome and increasing the Treatment 4 tumour Summary types: breast,proportion of self managed care colorectal, lungfor those living with and beyond Incorporating & prostate testing of keycancer. Given the nature of cancer enablers:survivorship, evidence will accrue Remote monitoring Care coordinationover time and, this current phaseof testing will require datacollection to continue in the longerterm to ensure the full impact ofrisk stratified pathways is captured.The overall direction of the work is disease process, the treatment The testing hypothesis is thatled by an NHS Improvement received and the individual’s through risk stratifying intoDirector and National Clinical Lead, personal circumstances. There are appropriate level(s) of care theresupported by a National two essential underpinning will be:Improvement Team and National enablers without which the modelClinical Advisers. The mandate for may not achieve the full potential. • An improvement in thethis work is through the National The key enablers are remote experience and patient reportedCancer 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 outpatientProgramme Board and NHS coordination which should ensure attendances from the traditionalImprovement Executive Team. services and communication model channels function across • A 10% reduction in unplannedRegardless of whether individuals organisations and appears admissions from baseline.have been treated with curative or seamless to the individual.palliative intent, the same modelshould apply with risk stratificationinto an appropriate level of care.This should take account of the
  8. 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. 9. The hypothesis – testing risk stratified pathways of care 9Risk stratification Risk stratification proportions tableAs a result of the pilot phase of thetesting and consensus meetings to Self Shared Complexagree the prototype pathways in Management Care Careeach of the tumours the differencein risk stratification for each Breast Cancer 70% 10% 20%tumour became apparent. Thepercentages in the table opposite Prostate Cancer 40% 25% 35%were agreed as the hypothesis forthe 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 forstratifying into the different levelsof care and whether the suggestedproportions are applicable inpractice. Treatment summary cancer diagnosis e.g. spinal cord The treatment summary should compression followingKey assessment/reassessment summarise the current state and radiotherapy and there will betriggers also the signs and symptoms that elements which are generalisableThere 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 typesupdated when reassessment takes be looking out for. Information and also to non cancer conditionsplace, have a timely treatment and education should be tailored and diseases.record summary updated and to the individual through thecommunicated appropriately after assessment process and be part of Key elements to support selfeach phase of treatment. With the their care plan. Education and managementpatient’s consent this should be support will also be required across • Information and educationshared with those providing or the clinical community. Good appropriate to the individualssupporting care delivery. It is communication in a timely manner needsrecommended that every patient is critical between professionals • Key contacts for care/support indiagnosed with cancer is provided and with the individual who is and out of hours for cancer andwith a hand held record, either in living with or beyond cancer. non cancer related problemspaper or electronic format, which This is therefore about a package • Appropriate timely access if thecontains information pertinent to of care for the individual which is condition changestheir ongoing management - seamless across organisational • Effective care coordinationwhether this is self or boundaries, with the right care, at • Effective remote monitoring asprofessionally managed. the right time, first time. appropriate.The key trigger points for Relationship between cancerassessment or reassessment along and other diseases/conditionsthe pathway of care will depend There will be elements of theon the disease process, the pathways which are unique totreatment and the individual individual tumour types and also topatient circumstances. individuals living following a
  10. 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. 11. National Cancer Survivorship Initiative Support Projects 11National Cancer Survivorship InitiativeSupport ProjectsThe 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 servicesbest practice integrated care the person with cancer as an and information to help peoplepathways for breast, colorectal, expert in themselves and the with cancer remain in or return toprostate and lung cancer patients health care professional as experts work. The NCSI Vocationalwhich can be rolled out across in cancer care both working Rehabilitation Project hasthe NHS. There is an offer of together in partnership to achieve developed a four level model ofsupport to the prototype sites the best outcome for the person Vocational Rehabilitation whichincorporating one or more of the with cancer. A number of provides early information andfollowing within their testing voluntary sector partners in care support at Levels 1 and 2 and awork: can offer support to establish a Vocational Rehabilitation Case range of self management Manager at Levels 3 and 4 withBenefits made clear12 - A opportunities, including training of referrals to specialist services suchMacmillan interactive online tool facilitators, support for as physiotherapy and selfoffering benefits advice and professionals to develop management programmes eginformation 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 tosupporting 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 andone off events, a group physical activity for those living information, both printed and onprogramme delivered by a mix of with and beyond cancer. It can line and provide peer support fromprofessional staff supported by have a positive effect on the side an established network of VRtrained and inspired volunteers. effects of radiation, chemotherapy, pilots.The clinics offer expert advice on immunotherapy hormone therapyhealth and wellbeing, access to and steroid therapy. Additional Many of the above projectssupport groups, reliable support for prototype sites is within NCSI are coordinated withinformation, financial benefits and available to integrate evidence Macmillan Cancer Support. Thissupport and give people the based physical activity promotion testing will contribute to the bestconfidence and skills to manage and services into standard patient practice evidence base, and to thetheir condition themselves as far care, at appropriate points across overall aim of the NCSI to ensureas 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 aboutTo enable supported self and primary care for cancer Macmillan and other tumourmanagement to take place patients. specific voluntary organisationschanges need to be made in skills involved in providing support todevelopment programmes for the test sites please see theprofessionals, self management resource page in the tumoursupport options for sections and at the end of thispatients/survivors and institutional document.support for service redesign.
  12. 12. 12 Enabling projects: Care coordination “ Care coordination is a function not an individual. ”
  13. 13. Enabling projects: Care coordination 13Enabling projects: Care coordinationCare coordination is not oneperson’s role, job or responsibility.It is the joining up of services,coordination, information andcommunication between caregivers, treatment providers, thoseliving with and beyond cancer andtheir families that creates aseamless experience of care.There are models for carecoordination in other policy areas:The single assessment process forolder people13, person-centredplanning for people with learningdifficulties14 and The CareProgramme Approach15 (CPA) forpeople with a mental illness. All ofthese referred to the importance ofassessment, care planning, carecoordination, review and the This will help to facilitate efficient • Proactive and prompt access andimportance of joint working across transfers of care throughout the intervention when neededhealth and social care within their pathway, wherever they occur, • Appropriate provision of correctspecialist areas which resonates whether to vocational information to enable individualwith our hypothesis and prototype rehabilitation, physiotherapy, choice and controlpathways. voluntary services, social care, or • Proactive monitoring as end of life care. necessary (remote monitoringAs good care coordination will where possible)provide the best opportunity for A working group consisting of • Transition of care along thepatients to be confident to self clinicians, patients and service pathway should appear seamlessmanage their lives with and managers are guiding and advising to the person receiving the carebeyond cancer, it is important for the direction of this enabling • Provision of correct informationall tumour teams that care project. The group has developed for healthcare professionals tocoordination is addressed whilst the guiding principles for support effective patienttesting the new risk stratified delivering good care coordination management in the event ofpathways. Building relationships as detailed below: care delivery away from theirand networks is crucial to usual care team e.g. hand heldimproving care coordination - not Guiding principles record with the componentsjust within the NHS, but beyond to • Good communication and listed:social care, charities, community professional relationships, formalcare providers and other agencies and informal, between thethat meet the needs of individuals. patient, their carer/family and the care or support team
  14. 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. 15. Enabling projects: Remote monitoring 15Enabling projects: Remote monitoringBackground REQUIRED FUNCTIONALITY OF REMOTE MONITORING:During meetings to seekagreement on the new prototype 1. To pull patient data set information from PAS via the localpathways of care, it became cancer information systemapparent that access to a safe 2. To pull test results from local diagnostic IT systemsreliable system that enables 3. To store key diagnostic and key patient history dataclinicians to monitor large numbers 4. To log any relevant treatment history during monitoringof stable patients in the period including a log of patient contactscommunity without the need for a 5. To set individual patient range/tolerances for specific testsface to face follow up 6. To schedule tests based on user definable follow up schedulesappointment was a key enabler for 7. To hold a range of template letters to enable communication oftesting risk stratified pathways of results to patients and GPs by post or electronicallycare. 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 toleranceprostate and colorectal specialties 9. To provide a summary history and treatment page with testwhere routine standard tests results shown numerically and graphicallyapplied and where interpretation 10. To record the outcome of any event or testof results could take place 11. To provide standard and ad hoc reporting and routine monitoringremotely. function and be amenable to clinical audit 12. To be NHS and HL7 compliant with secure accessResponding to the opportunity this 13. To use a common file format for all data export to be ableoffered, a small working group to import the data into local IT systems if required.comprising test site clinicians andIT representatives was establishedand the key requirements for thesystem identified. We are indebted Prostate cancer Colorectal cancerto Mr Jon McFarlane, Consultant The main indicator for prostate Surveillance tests followingUrologist at the Royal United cancer is the prostate specific treatment for colorectal cancerHospital, Bath and his team who antigen test (PSA). Whilst not the comprise regular carcinoembryonichelped inform the development of only indicator of recurrent disease, antigen (CEA) tests, CT scans andthe solution for prostate cancer it is the test used routinely to colonoscopy or sigmoidoscopyand on which the colorectal monitor patients in the follow up procedures depending on the sitesolution 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. 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. 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 resultsfrom the Trust pathology systems and plots on a graph below for easyinterpretation.Screenshot 3: The ‘Alert’ page identifies patients where an action is requiredeither that a test result requires review, a delay has occurred in the test beingtaken or to indicate that a test tolerance limit has been exceeded.
  18. 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. 19. Breast cancer 19Follow up after treatment for There is variation nationally on the Various charities are supportingbreast cancer is one area where frequency and duration of follow the teams in delivering this testingsome 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 foundoutpatient follow up frequency of follow up ranged on the resources page.appointments. This has been from one outpatient visit to 12achieved by introducing drop in visits or more over a five year This programme aims to addressclinics, open access clinics and also period. Some patients are survivorship needs and will focusempowering patients to self followed up for life. on the assessment and caremanage from the end of planning especially after end oftreatment, accessing the CNS by NICE guidelines16 suggest the treatment, information for thephone and only attending clinics following surveillance tests: patients and the GP and onwhen deemed necessary. improving access to support • Offer annual mammography to services to enable people to returnThe main reasons cited for all patients with early breast to as normal a life as possibletraditional regular follow up cancer, until they enter the following their treatment.appointments for breast cancer Breast Screening Programme orare: 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 canapproximately 10-20% within ten lead to late effects, such asyears of diagnosis, although most lymphoedema from radiotherapy,recurrences occur within five years infertility and prematureand the likelihood varies with the menopause from chemotherapy,type of cancer. Patients should be osteoporosis from hormoneaware of the symptoms and signs therapy, cardiac damage fromto look out for and when to seek chemotherapy or radiotherapy andhelp. Most recurrences are very importantly, breast cancerdetected by the patients survivors do have an increased riskthemselves or on mammography of significant depression.surveillance rather than at routineclinical follow up.
  20. 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. 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 carenation 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. 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. 23. Breast cancer 23Brighton 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.ukCurrent service In 2009, the team trialled an We are planning to test an end ofThe Park Centre for Breast Care ‘information day’ for patients and treatment assessment using theopened in Brighton in November carers that proved very successful ‘Distress Thermometer’, the2008 as the first unit of its kind in and recognised the opportunity preferred tool across our Trust. Wethe country, offering the latest that such an event could offer as also plan to use the ‘Breast Cancermammography technology and all part of a redesigned pathway of Care’ care plan booklet and CDoutpatient services under one roof care. which also allows space for localas part of Brighton and Sussex information and support groups.University Hospitals (BSUH). Our Testing We are also testing the treatmentbreast screening service is currently “Building on our earlier work we summary to help improverated in the top 10% in the UK by are really keen to establish regular communication with GPs to assistthe National Breast Screening information ‘events’ as part of our them with their role in supportingProgramme. mainstream service with a patients in primary care. particular focus on weightThe unit diagnoses around 575 management, exercise and Our clinicians are currently workingnew breast cancers a year. Most vocational rehabilitation. Our first on the revised protocol for risksurgery takes place at The Princess event is planned for September” stratifying patients for follow upRoyal Hospital, Haywards Heath said Venessa Neylen, Clinical that will result in a reduction inwith radiotherapy at the main Services Manager. “We will hold unnecessary outpatient visits forRoyal Sussex County Hospital in the first event in the modern post many patients.Brighton. The Trust is planning to graduate centre which offers goodbe a test site for the 23 hour bed non clinical facilities for such Finally, one of the key enablers formodel 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 annualOur current breast cancer follow arrangements for the day and mammograms. We are workingup protocol includes six consultant hope that many patients will be with NBSS to see if their system forled appointments over five years able to attend.” this purpose, which will also helpbefore discharge to the GP. us improve the system for screening high risk familial patients.
  24. 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. 25. Breast cancer 25The 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 managementThe breast service for the Trust is pathway and to work on the Testingbased at Hillingdon Hospital where automation of the call and We will be using the distressthe majority of surgery takes place. recall system we have for the thermometer as both our assessmentChemotherapy and radiotherapy annual mammograms that and stratification tool for patients atare provided at Mount Vernon patients require.” the end of their breast cancerCancer Centre. The unit sees treatment. The distress thermometerapproximately 170 new breast will be used to address patient’s “Whilst we have excellentcancers per annum. needs and develop an individualised support services available at the care plan. This work will continueThe self management model of Linda Jackson and Yiewsley from that developed by our lungafter care has been established Centres we recognise that this cancer team who took part in theover an eight year period with the is not local to all our patients. assessment and care planning pilotmajority of breast cancer patients We will be working with the phase.being offered a self management NCSI project leads to improvepathway post treatment. Patients access to exercise, health and We will also be testing this pathwayreceive telephone support from wellbeing and vocational in patients diagnosed with advancedtheir original breast care nurse and rehabilitation to help us to disease and developing relevantdirect open access back to either a information packs in conjunction maximise opportunities for ourbreast or oncology clinic to a nurse with the Information Prescribingled 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. 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. 27. Breast cancer 27The 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 toCurrent service encompass cancer specific issuesOur breast unit is at Ipswich to enable our patients to accessHospital NHS Trust where the local leisure facilities.”majority of surgery, chemotherapyand radiotherapy takes place. The Louise Smith, Project Manager.unit sees approximately 300 newbreast cancers per annum and areconsidering entering the enhancedrecovery programme in the nearfuture. We have successfully runnurse led follow up clinics for anumber of years, which we areplanning to extend as part of thetesting. We already have anestablished remote monitoringsystem for call and recall forannual mammograms before thetransfer to the Breast Screeningservice.
  28. 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. 29. Colorectal cancer 29The management of colorectal On surveillance tests the recentcancer follow up after treatment draft NICE guidelines17 suggest:varies although there is generalagreement that the reasons for • A minimum of two CTs of thefollow up after curative treatment chest, abdomen and pelvis in theare 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 isThe incidence of disease normal consider furtherrecurrence is estimated to be 9 - colonoscopic follow up after five13% and in the vast majority of years.cases recurrence occurs within twoyears of completion of multi- Treatment for colorectal cancermodality primary treatment leads to very specific side effectssuggesting that more intensive relating to bowel function, sexualsurveillance during this time would function, psychological issues andbe beneficial. activities of daily living. Many patients have ongoing needs andNurse led follow up is often encounter fragmented andcommonplace in many colorectal poorly coordinated follow up care.units however there is variationnationally on the frequency and The teams will aim to addressduration of follow up and the these aftercare needs and willrange of surveillance tests offered. focus on the assessment and careIn the ‘Rapid Review of Follow up planning especially after end ofpractice in England7 follow up treatment, information for thevisits in this tumour group ranged patients and the GP and onfrom 5 -13 visits over five years improving access to support(average 8.4 visits) across the 21 services to enable people to returncolorectal units surveyed. to as normal a life as possible following their treatment.
  30. 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. 31. Colorectal cancer 31g 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 carenation • 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.

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