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

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



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 ...

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

    • NHSCANCER NHS Improvement CancerDIAGNOSTICSHEARTLUNG NHS Improvement - Cancer Effective follow up: TestingSTROKE 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 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
    • 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 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.
    • 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 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 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 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 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 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 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, 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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 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.
    • 32 Colorectal cancer Guy’s and St Thomas’ NHS Foundation Trust diagnosis and this will now be Mark George reviewed at end of treatment Colorectal Clinical Lead and where patients will be supported Colorectal Surgeon and signposted if required to other mark.george@gstt.nhs.uk new support services we will making available such as the Roni Cummings Clinical Nurse Specialist exercise programme. roni.cummings@gstt.nhs.uk Our first information day for Claire Mcgilly colorectal cancer patients and Clinical Nurse Specialist carers is scheduled for this summer claire.mcgilly@gstt.nhs.uk and we have been working with our partner team in N. Bristol, Jannike Nordlund Claire Taylor (Lecturer in Colorectal Project Manager Nursing at the Burdett Institute) jannike.nordlund@gstt.nhs.uk We are keen to strengthen our and the Health and Well being patient care both in terms of how pilot sites to develop a suitable we assess needs and how we agenda for this. Current service respond to these so that patients The Colorectal Service for the Trust have a greater understanding of During the summer we plan to is based at St Thomas’ Hospital their disease, how to cope with introduce the concept of remote where the majority of surgery any side effects of treatment and monitoring to reduce the need for takes place. Chemotherapy is ways to encourage self hospital visits that add no clinical provided on the Guy’s site and management. As professionals we value. We plan to use an IT radiotherapy provided at St are using this project to really solution, that will enable remote Thomas’. The unit sees explore how we can offer more monitoring, reducing patients’ approximately 140 new colorectal tailored aftercare based on needs to attend clinic, either the cancers per annum and we are a patients individual needs. one developed in North Bristol or specialist centre for lower rectal our own that will fully integrate carcinomas and anal cancer. The Testing with our existing information enhanced recovery programme is We started our patient-centred systems. well established and we have been programme by reviewing and successfully provided follow up understanding our current care We will be collecting key clinics that are run by nurses for pathways and by speaking to our measurement data throughout, many years. Appointments are patients groups. Overall the conducting a patient survey and aligned to the five year test patients were very satisfied with collecting information on patient schedule after which most patients their care but agreed that there referrals and prospective are discharged to their GP. could be more initiatives put in outpatient appointments saved. place to support patients after We have a number of excellent treatment has completed. We believe that this project will support services available to us lead to further improvements in such as the Dimbleby Cancer Care Underpinning all our work will be the quality and effectiveness of our Centre for psychological support assessment and care planning. We aftercare services. and access to complementary already undertake a full therapies. assessment of the patient at
    • Colorectal cancer 33North Bristol NHS Trust Anne Pullyblank Colorectal Clinical Lead and Colorectal Surgeon anne.pullyblank@nbt.nhs.uk Mike Chadwick Consultant Colorectal Surgeon michael.chadwick@nbt.nhs.uk Sarah John Clinical Nurse Specialist sarah.john@nbt.nhs.uk Dany Bell Project Manager dany.bell@nbt.nhs.ukCurrent service A team member said: We are leading the work on theColorectal cancer surgery is national solution for remoteundertaken at Frenchay Hospital “As professionals we have used monitoring and will be furtherwith chemotherapy and developing our local Client this project to test differentradiotherapy delivered at University Relationship Management SystemHospitals Bristol NHS Foundation models of self management to incorporate the findings fromTrust. and living well programmes the distress thermometer and an and subsequently to test electronic care plan and treatmentThe unit sees approximately 370 summary that will be shared with different models of follow-upnew colorectal cancers a year. We patients and GPs.have a successful enhanced management, includingrecovery programme that is in its telephone follow-up and We are currently looking at optionssecond year and established nurse remote surveillance.” available for a hand held record forled follow up clinics. cancer patients. Testing We will be collecting data on We have already developed an unplanned admissions, prospective in-house self management follow up saved for patients self programme in collaboration with managing and referrals to support clinical psychology and health and services. wellbeing courses working in partnership with the Penny Brohn Cancer Centre and will be testing the new pathway to improve support for patients to self manage and give them confidence in the remote monitoring system.
    • 34 Lung cancer Lung cancer Introduction Lung cancer overview “ The issue of how best to follow Lung cancer is the commonest cause of cancer deaths in the UK up lung cancer patients is (22% of all cancer deaths – more difficult. This is because it is than that for colorectal and breast almost an evidence-free area – cancer combined). Patients often present late in the course of their as has been recognised in the disease (>60% have advanced/ recently updated NICE Lung incurable disease at presentation). cancer guidance18. These The median survival from time of diagnosis is measurable in months. projects, whilst not research, The average one year survival is are well positioned to provide around 30% with a five-year Dr Mick Peake, National Clinical an excellent level of practical survival of 8%. Those diagnosed Lead, Lung Cancer with early disease are often offered experience of different ways of surgery at a specialist centre and following up such patients, these make up the majority of both to optimise the experience patients who survive beyond five years. Smoking is still the single of care (for them and their families) and to use scarce healthcare greatest avoidable risk factor and resources in the most efficient and cost-effective way. Many causes around 90% of lung cancer patients end up in hospital for problems that could well be in men and 85% in women. prevented or solved in other ways. This work has the potential to The diagnosis and staging process greatly improve the quality of care in this difficult disease.” is complex and crucial to making optimal decisions about a wide Dr Mick Peake, National Clinical Lead, Lung Cancer range of treatment options. Treatment rates are very variable around the UK and the need for highly expert teams to manage these patients is more important than ever. Patients are often highly symptomatic with significant health needs and frequent utilisation of out of hours care. Many patients are newly diagnosed with lung cancer during an emergency admission (38%), some via A&E and present with significant symptoms.
    • Lung cancer 35Follow up care tends to be tailored The two test sites will also beto individual patient needs rather undertaking a data gatheringthan a prescriptive follow up exercise to look at the type andprotocol. This is made more extent to which lung cancercomplex because of the fact that, patients and their carers use healthcommonly, a number of different and social care services over thespecialities are involved in the care next six month period.of any one patient (sometimes indifferent hospitals). Increasingly, This primary aim of collecting dataand where CNS resources exist, is to define:nurse led follow up clinics have 1. The extent of multi-agencybeen established and studies have support provided to lung cancershown that patients and GPs are patientshighly satisfied with this model of 2. The quality of survivalcare. Several units have also 3. Key components or patterns ofintroduced telephone assessments care that enhance quality ofand an open access service into care and to provide baselineclinics should the need arise. measurements on which to base future service improvementThe purpose for this project is to programmes.test the degree to which riskstratified pathways can be appliedto lung cancer patients and work iscommencing to undertake aretrospective audit of cancerpatients to help determine thecriteria that could be used for thefuture.The use and provision ofmultidisciplinary support (usuallyinvolving several different providersacross the local health economy) isnot well understood and has notpreviously been described withinthe UK. Nevertheless,comprehensive seamless careacross the local health economy isrequired as patients transition fromactive treatment to palliativetreatment and end of life care.
    • 36 Lung cancer Risk Stratified Lung Cancer Pathway - For Testing CURATIVE INTENT Surgery/radical /adjuvant treatment MDT Review care plan Follow up assessment Joint lung risk Follow up. cancer clinic PALLIATIVE INTENT stratification Adjuvant treatment/ Frequency Diagnosis to discuss and and type other treatment/ Treatment treatment management determined options Summary by need Education, Assessment NO TREATMENT Review support care plan Patient choice care plan services with commenced focus on self management where appropriate Supportive care Care coordin KEY FEATURES Risk stratification decision points Care planning For patients treated with curative intent it may be feasible to refer The life expectancy for patients diagnosed with lung caner is poor and to a self managed pathway once surgery is complete and enrol onto needs will change frequently and sometimes rapidly. Teams need to a remote surveillance system with surveillance chest X-rays annually provide a very flexible approach to care and for some this may need a for 5 years. For all other patients a self management pathway is review of the care plan at each contact with the health care unlikely to be an option unless through patient choice. professionals. The care plan review is usually commenced by the lung nurse specialist but can be updated by other professionals involved e.g. community nursing teams. The care plan should be kept in the patient hand held record.
    • Lung cancer 37 Patient recalled for ABNORMAL review RESULT Self Results to management Scheduled NORMAL patient & Continue Self - estimate chest GP by monitoring management 15% xray RESULT post/email 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 60% Frequency determined by need MDT/Consultant led follow up Complex care - estimate Review pathway Complex care 25% choice each visit Frequency determined by need Transition to end of life carenation Support services of particular relevance to lung cancer patients • Anxiety and Depression – psychosocial issues are extremely • Diet and nutrition – Fatigue and breathlessness can result in common in lung cancer survivors. Uncertainty about disease poor appetite and nutrition and the advice and input from a progression is a common observation and less so in those on a dietician can be extremely useful, especially for those who live curative pathway where the follow up plan is clearer. Patients alone or are isolated. often need specific help and advice and often benefit form • Breathlessness – the actual experience or fear of breathlessness referral for specialist psychological support. requires specific advice and support for this group of patients and • Sleep problems – common in long term lung cancer survivors. their carers. Physiotherapy advice via individual referral or Impacts on quality of life. breathlessness clinics helps many patients and practical advice on coping mechanisms at home.
    • 38 Lung cancer Brighton and Sussex University Hospitals NHS Trust follow up patients are seen. This Sarah Doffman clinic allows symptomatic patients Clinical Lead for project and to self refer or professional- Consultant Respiratory Physician triggered appointments for urgent sarah.doffman@bsuh.nhs.uk assessment by either a respiratory or palliative care physician. The Louise Mason Consultant Specialist capacity for rapid access was Palliative Care increased by minimising louise.mason@bsuh.nhs.uk unnecessary follow up appointments by contacting Eileen Baldock patients by telephone a week Clinical Nurse Specialist before their clinic, cancelling and eileen.baldock@bsuh.nhs.uk rescheduling appointments if they did not wish to be seen. By Leanne Picco avoiding emergency/unscheduled Clinical Nurse Specialist attendances at A&E with the leanne.picco@bsuh.nhs.uk facility to rapidly access lung cancer specialists, there was a Ben Doffman reduction in bed days attributable Project Administrator to lung cancer by 329 over six ben.doffman@bsuh.nhs.uk months, a reduction in scheduled routine follow ups by one third and an improvement in patient Current service satisfaction with the service. Brighton University Hospital sees approximately 250 newly Testing Advice Bureau staff (to advise on diagnosed lung cancer patients We plan to apply a retrospective financial and benefits matters), annually at the cancer centre in model for assessing risk to all psychological services and Brighton or at the Princess Royal patients diagnosed over a 12- Macmillan Nurse Specialists. Data Hospital in Haywards Heath. month period (May 2010 – May will be collected on uptake of the Patients suitable for lung surgery 2011). The results of this will be service, patients’ perception of its are referred to Guy’s and St compared with the actual care that effectiveness, unscheduled hospital Thomas’ Hospital. patients received to assess the admissions and cost implications as validity of the stratification model well as data on patients’ Work has already been carried out before any changes will be made understanding of their disease and within the lung cancer service at to the way services are currently how to manage symptoms and BSUHNT, initiating assessment and delivered. when/how to access healthcare if care planning and the use of a needed. Treatment Record Summary. This is A health and wellbeing clinic will now fully embedded in current be developed as part of a trial to practice. assess its utility and inform further research into its application in lung The service was redesigned and a (and possibly breast) cancer. The rapid access cancer clinic (also clinic will be staffed by allied referred to as the combined cancer specialists in physiotherapy, clinic) introduced where new and dietetics/nutrition, Citizen’s
    • Lung cancer 39Hull & East Yorkshire Hospitals NHS Trust Gavin Anderson Lung Clinical Lead and Consultant Respiratory Physician gavin.anderson@hey.nhs.uk Clinical Nurse Specialist Team Telephone: 01482 461090 Ruth Hudson Project Manager ruth.hudson@hey.nhs.ukCurrent service Testing We will be collecting data on theThe lung cancer unit is based at We will continue our nurse led unplanned admissions, prospectiveCastle Hill Hospital where the clinics and using the SPARC outpatient slots saved andmajority of surgery, chemotherapy assessment tool and testing the agencies referred to as part of thisand radiotherapy take place. The care plan for our patients. project.unit sees approximately 500 newlung cancers per annum. We will be testing the Treatment Summary process and trying toWe have recently introduced EBUS improve our communication withfor the trust; this is a valued tool in GPs and primary care colleagues.the diagnosis and staging of lungcancer. Following an assessment of support services we recognise theA team member said “We have need to work with the NCSItested nurse led follow up clinics project leads to further developas part of the pilot phase of the support for health and wellbeing,NHS Improvement adult exercise, self management andsurvivorship programme and found vocational rehabilitation across ourthis to be extremely beneficial to geographical area and also look atpatients and staff. We hope to the speed and response of referralsbuild on this testing to refine these for financial support for lungprocesses in this testing.” cancer patients where time is of the essence.
    • 40 Prostate cancer Prostate cancer Introduction Prostate cancer overview “ The rising incidence of prostate Prostate cancer is the most common cancer in men in the UK cancer and an ageing with around 38,000 new cases population have led to a diagnosed per year. The incidence marked increase in demand for is rapidly increasing, at least partly due to the ageing population and urology outpatient the use of PSA testing. appointments. Commissioners faced with the need to pay for Prostate cancer is very common in asymptomatic elderly men, who the most effective care, closer will often have an excellent to home where possible, have prognosis. Hence survival rates are Roger Kocklebergh, National wanted to restrict hospital partly dependent on the Clinical Adviser - Prostate Cancer proportion of these men who are follow up. There has been diagnosed with prostate cancer. disagreement among urologists National and regional differences whether prostate cancer in the investigation of men, usually with PSA, and late presentation in patients can be safely followed up in the community. The some UK regions are likely to hypothesis that risk stratified pathways and an IT based remote account for many of the reported monitoring system will lead to safe, convenient and cost effective differences in survival. follow up for patients will be tested. I am looking forward to There are uncertainties about working with the clinical teams in Ipswich, Luton, Hillingdon and treatment selection; hormone North Bristol as they commence testing the hypothesis.” therapy is established in the treatment of metastases while Roger Kocklebergh, National Clinical Adviser - Prostate Cancer radiotherapy and surgery have been shown to be superior to no treatment in localised disease. These carry significant side effects, hence many men with a good prognosis will choose active monitoring, using the PSA test to trigger a change to a more active treatment. For elderly or unfit men who are unlikely to benefit from active treatment watchful waiting is commonly used, this describes a plan to delay hormone therapy until progression occurs.
    • Lung cancer 41Most of the patients described NICE guidelines19 give the • After at least two years, menabove will have a prolonged following recommendations: with a stable PSA and who havesurvival, their follow up will be had no significant treatmentbased on PSA testing in most cases • Healthcare professionals should complications, should beand remote monitoring will discuss the purpose, duration, offered follow-up outsidehopefully save the patients time frequency and location of hospital (for example, in primaryand inconvenience and release follow-up with each man with care) by telephone or secureclinical time for patients who localised prostate cancer, and if electronic communications,cannot be monitored remotely. he wishes, his partner or carers. unless they are taking part in a • Men with prostate cancer should clinical trial that requires moreFollow up after treatment for be clearly advised about formal clinic-based follow-up.prostate cancer varies greatly potential longer term adverse • Direct access to the urologicalaccording to the disease, effects and when and how to cancer MDT should be offeredtreatment and individual. The report them. and explained.main reasons for traditional follow • Men with prostate cancer whoup appointments are: have chosen a watchful waiting There are various late effects that regimen with no curative intent tend to be associated with prostate• PSA testing or giving of results should normally be followed up cancer. Following radical• Post surgery checks in primary care in accordance treatment these may include:• Monitoring of patients on with protocols agreed by the hormone therapy local urological cancer MDT and • Rectal symptoms including• Careful monitoring of ‘watchful the relevant primary care bleeding and urgency wait’ patients organisation(s). Their PSA should • Urinary symptoms including• Metastatic patients and those be measured at least once a year. incontinence and obstruction with castrate resistant prostate • PSA levels for all men with • Erectile dysfunction cancer that need complex care prostate cancer who are having • Increased risk of other pelvic and careful monitoring. radical treatment should be cancer. checked at the earliest six weeksThere is variation nationally on the following treatment, at least Following hormone therapy thesefrequency and duration of follow every six months for the first two may include:up. In the ‘Rapid Review of Follow years and then at least once a • Osteoporosis leading to a raisedup practice in England’7 follow up year thereafter. fracture riskis generally for life with regular • Routine digital rectal • Elevated cardiovascular risk.annual PSA testing for most examination (DRE) is notpatients. Unstable patients are recommended in men with This programme aims to addressgenerally managed by the prostate cancer while the PSA survivorship needs and will focusconsultant and stable patients by remains at baseline levels. on the assessment and carethe CNS or the GP under shared planning especially at end ofcare or as a Locally Enhanced treatment, information for theService (LES). patients and the GP and on improving access to support services enabling people to return to as normal a life as possible following their treatment.
    • 42 Prostate cancer Risk Stratified Prostate Cancer Pathway - For Testing Enrol on PSA tracker Review Radical/ care plan surgery/ /adjuvant treatment or MDT hormones Follow up assessment Follow up as per Outpatient risk protocol. Risk visit and Active stratification stratification Diagnosis treatment surveillance and from three decision Treatment months or when Summary PSA stable Assessment Hormones/ Education,support care plan other Review services and commenced treatment/ care plan optimisation for management self management Supportive care Care coordin KEY FEATURES Risk stratification decision points Review care plan (following treatment) For the many patients with low risk factors for disease, treatment The care plan should be reviewed at the end of treatment/decision not effects and individual circumstances it may be feasible to refer to a to treat to establish an appropriate care plan that includes supportive self managed pathway with remote monitoring as appropriate. A care services to enable the patient to self manage. draft criteria for risk stratification table is on page 44. This has been discussed by the prostate tumour group and is being tested by some of the sites.
    • Prostate cancer 43 Patient recalled for ABNORMAL review RESULTA Self Scheduled Results to Continue management NORMAL patient & Self PSA remote management - estimate scans, RESULT GP by monitoring 40% biopsies post/email 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 25% Frequency determined by need MDT/Consultant led follow up Complex care Review pathway Complex care - estimate choice each visit 35% Frequency determined by need Transition to end of life carenation Support services of particular relevance to prostate cancer Remote monitoring patients To incorporate the scheduling and monitoring of PSA tests and • Diet and exercise - healthy eating and physical activity can help biopsies where required, with results reviewed by the team and recovery and reduces risk of recurrence. Behavioural changes patients recalled to clinic if necessary. Open access back into the require investment of time, expertise, training and service and contact numbers for cancer related issued in and out of encouragement. hours will be provided for patients. • Peer support/community support - talking to others about their cancer experiences and meeting others living beyond cancer as positive role models but also non cancer groups within the community.
    • 44Draft Criteria for Risk Stratification (to be tested) Pathway Complex Shared care Supported self Trigger for re-referral Prostate cancer management Curative All patients for first two years Those unable to comply Potentially all patients Any rise in PSA after surgery Patients with symptoms with self management. once symptoms stable. Rise above 2 + nadir after RT. (unstable or awaiting treatment). Follow up with 6 monthly PSA. Active monitoring PSA alone is not an adequate tool. Repeat biopsy schedules are not yet fully defined. Watchful waiting Those unable to comply All patients. Symptoms or PSA rise. with self management. Trigger points poorly defined but 2 or 3 consecutive rises is predominant trigger. High risk ( T3/4, or PSA Increasingly treated with Long term hormones hence Patients with stable symptoms Symptoms or 2 or 3 PSA >20 or Gleason >7) radiotherapy and hormones. cardiovascular risk and and PSA after 2 years. rises if on hormones. no metastases bone health monitored in Rise above 2 + nadir after RT. primary care. Metastases and Symptomatic and those Cardiovascular risk and Patients with 90% fall in PSA Symptoms or 2 or hormone therapy with < 90% fall in PSA. bone health monitored in who are asymptomatic. 3 PSA rises. primary care. Metastases and no Need careful monitoring. immediate treatment Triggers based on symptoms, marker levels and rate of change. Castrate resistant Managed by MDT but mostly prostate cancer managed by oncologists once 2nd or 3rd line therapy failed.
    • Prostate cancer 45North Bristol NHS Trust Quote from member of team: We are leading the work on the Raj Persad national electronic solution for Prostate Clinical Lead and remote monitoring and will be Prostate Surgeon “As professionals we have used further developing our local Client rajpersad@bristolurology.com this project to test different Relationship Management System Emma Elliott models of self management to incorporate the findings from Clinical Nurse Specialist and living well programmes and the distress thermometer and an emma.elliott@nbt.nhs.uk electronic care plan and treatment subsequently to test different summary that will be shared with Dany Bell models of follow-up patients and GPs. Project Manager management, including dany.bell@nbt.nhs.uk We are currently looking at options telephone follow-up and available for a hand held record for remote surveillance.” cancer patients.Current service Testing We will be collecting data onThe prostate cancer service for the We have already developed health unplanned admissions, prospectiveTrust is based at the Southmead and wellbeing courses working in follow up saved for patients selfHospital site where surgery takes partnership with the Penny Brohn managing and referrals to supportplace. Chemotherapy and Cancer Centre and an in house self services.radiotherapy is predominantly management programme indelivered at University Hospitals collaboration with clinicalBristol Foundation Trust psychology and will be testing theWe are currently reconfiguring new pathway to improve supporturology inpatient and emergency for patients to self manage andservices across both Bristol Trusts give them confidence with theso they will all be delivered at remote monitoring system.Southmead Hospital.North Bristol NHS Trust seesapproximately 550 new prostatecancers per annum withapproximately 800 new prostatecancers per annum across the city.We are the supra-regionalspecialist centre for penile cancerand network centre for complexprostate and bladder cancer. Wehave an established enhancedrecovery programme andsuccessful nurse led follow upclinics for prostate cancer.
    • 46 Prostate cancer The Hillingdon Hospitals NHS Foundation Trust “A gap analysis of our Testing Alvan Pope We will be using the distress Prostate Clinical Lead and supportive services showed that thermometer, care plan and Consultant Urologist we have some great services treatment summary tested by our alvan.pope@thh.nhs.uk locally but we need to improve colleagues in the lung cancer team access to exercise and last year in the assessment and Lorraine Barton Lead Nurse care planning pilot phase. This will vocational rehabilitation for our be used throughout the pathway lorraine.barton@thh.nhs.uk prostate cancer patients and we through to end of life care. Juliette Walker will be in touch with the NCSI Project Manager We will also be testing the national Juliette.Walker@thh.nhs.uk project leads for these areas.” solution being developed to track PSA test as part if the remote “We are using this project to monitoring for prostate cancer patients. Current service review how we communicate The prostate cancer service for the with other key professionals Trust is based at Hillingdon involved in the patient journey Hospital where the majority of surgery takes place. Chemotherapy and to give us the opportunity and radiotherapy take place at to truly engage with teams neighbouring Mount Vernon outside the hospital to ensure Cancer Centre. The unit sees approximately 285 new prostate a timely, consistent and cancers per annum. structured team approach.” Quotes from the team: “This project gives us the opportunity to formalise the criteria for risk stratification and reduce the number of patients attending clinic for PSA test results.”
    • Prostate cancer 47The Ipswich Hospital NHS Trust Dr Christopher Scrase Prostate Clinical Lead and Macmillan Consultant Clinical Oncologist christopher.scrase@ipswich hospitals.nhs.uk Gill Heard Sam Bower Lead Matron oncology.matron@ipswich hospital.nhs.uk Louise Smith Project Manager Louise.m.smith@ipswichhospital. nhs.ukCurrent service Quote from a member of the team: TestingOur prostate service is based at We will be using a locally adaptedIpswich Hospital NHS Trust, surgery “Having already recognised the Distress Thermometer assessmentis done at Cambridge or Norfolk tool and combined treatment need for support for patients inand Norwich Hospitals with summary and care plan in onechemotherapy, radiotherapy, other the survivorship phase of their document for patients as part oftreatments and follow ups here at cancer journey in all cancers, as the their hand held record.Ipswich. The unit sees with our other tumour groups,approximately 250 new prostate We are planning to test an a four week educationcancers per annum. We hope to electronic ‘live’ copy of thisextend our established nurse led programme or twice yearly document that can be accessed byfollow up clinics as part of the education days are available to health care professional at anytesting. empower patients to self time in the pathway. manage, as appropriate.” We will be collecting data on the number of patients risk stratified “Working with the NCSI project to self management, outpatient leads, local authorities and PCTs slots saved and unplanned admissions. as part of the ‘Fit Villages’ scheme on exercise and We are hoping to test a PSA rehabilitation to support self tracker IT system locally to build on management for cancer existing arrangements with our GPs. patients and we plan to further develop these areas.”
    • 48 Prostate cancer “ We believe a large proportion of patients will be suitable for self management and it will be interesting to see whether this turns out to be the 40% envisaged within the NCSI draft pathways for testing. Team Member - Luton and Dunstable Hospital NHS Foundation Trust ”
    • Useful resources 49Luton and Dunstable Hospital NHS Foundation Trust it will be interesting to see whether The CNS team commenced end of Mr Asher Alam this turns out to be the 40% treatment assessments and care Prostate Clinical Lead and envisaged within the NCSI draft planning using the Pepsi Cola Consultant Urologist pathways for testing.” assessment tool to guide the asher.alam@ldh.nhs.uk discussions. Motivational Testing interviewing skills training for staff Jan Chalkley Lead Cancer Nurse Over recent weeks the team have is planned. We are working with jan.chalkley@ldh.nhs.uk been working hard to put in place prostate cancer charities to all elements of the new pathway. improve patient information. Liz Jones The clinicians have agreed draft Network Lead for Survivorship criteria for risk stratifying patients “We are particularly keen to raise liz.jones9@nhs.net and since April patients with stable the importance of activity and disease are being transferred to a exercise for this group of patients” self managed pathway of care. said Jan, “not only to benefit their We are continuing to refine the recovery from treatment for theirCurrent service referral process and data collection prostate cancer but also to benefitThe prostate cancer service is systems. their general health andbased at Luton and Dunstable wellbeing”. The team have metHospital (L&D). Chemotherapy Remote monitoring is critical to the with ‘Luton Active’ to developservices are delivered locally, new pathway for managing PSA exercise referral pathways and ahowever, patients requiring surgery follow up tests. The Trust plans to training session on cancerare referred to the Lister Hospital use the national solution until the awareness has been delivered toin Stevenage and those requiring same functionality can move to the Luton Active Group. A localradiotherapy referred to Mount ‘Infoflex’, the local Cancer service directory to aid staff inVernon Hospital. All are referred Information System. Patients that referring and signposting patientsback to L&D once their treatment have completed treatment will is expected to be available shortly.is complete. have a phone call from the CNS to enrol them on the remoteThe unit sees approximately 180 monitoring system.new prostate cancer patients perannum. The current follow uppathway includes eight follow upappointments over five years withmany patients having their PSAresults monitored by the hospitalfor life. Until a year ago a largenumber of follow up patients weremanaged via a nurse led clinichowever this ended when theCNS left and patients reverted toconsultant led appointments.A team member said “This projecthas come at a perfect time for oururology team. “We believe a largeproportion of patients will besuitable for self management and
    • 50 Useful resources Useful resources NHS Improvement Adult Survivorship website CHARITIES AND VOLUNTARY ORGANISATIONS www.improvement.nhs.uk/cancer/adultsurvivorship SUPPORTING THE TESTING WORK NCSI website Breast Cancer Care www.ncsi.org.uk This charity covers the UK and their vision is for every person affected by breast cancer to get the best Macmillan website treatment, information and support. They produce a www.macmillan.org.uk range of information in many formats and have a “Moving Forward” resource pack specifically for NCAT website patients living with and beyond cancer. www.ncat.nhs.uk www.breastcancercare.org.uk NCAT Holistic assessment page Beating Bowel Cancer www.ncat.nhs.uk/our-work/living-with-beyond- A leading UK charity for bowel cancer patients, cancer/holistic-needs-assessment working to raise awareness of symptoms, promote early diagnosis and encourage open access to National Cancer Intelligence Network (NCIN) treatment choice for those affected by bowel cancer. The NCIN is a UK-wide initiative, working to drive They provide a wide range of services including buddy improvements in standards of cancer care and clinical and peer support for patients and deliver numerous outcomes by improving and using the information awareness and education programmes aimed at the collected about cancer patients for analysis, publication public as well as professionals. and research. The E-Atlas provides data on survival and www.beatingbowelcancer.org prevalence. www.ncin.org.uk/cancer_information_tools/eatlas.aspx Bowel Cancer UK This UK charity aims to save lives by raising awareness The National Lung Cancer Audit of bowel cancer, campaigning for best treatment and This is now a well-established national programme and care and providing practical support and advice. They annual reports are produced, showing a wide range of produce a large range of patient leaflets and run the measures by trust and network across the UK. Bowel Cancer Advisory Service - a full time national The reports are available via the NHS Information freephone advice and information service for all those website (www.ic.nhs.uk) and the report for patients affected or concerned about the disease. first seen in 2009 is due for publication on 23 May www.bowelcanceruk.org.uk 2011. Cancer Research UK National Institute for Health and Clinical This charity, dedicated to beating cancer by research, Excellence (NICE) has a wide range of information on their website www.nice.org.uk including links to all the latest incidence, mortality and survival rates. There are resources available for patients and professionals. http://info.cancerresearchuk.org/cancerstats/types/ prostate
    • Useful resources 51The Prostate Cancer Charity NHS choicesProvides support and information for patients, families, NHS choices provides information and useful links oncarers and health professionals on living with prostate many health concerns including cancer.cancer. www.nhs.uk/conditions/cancerwww.prostate-cancer.org.uk PROFESSIONAL ORGANISATIONSRoy Castle Lung Cancer FoundationProvide practical and emotional support for those Association of Coloproctology ofaffected by lung cancer including support for smokers Great Britain and Irelandwho want to quit and guidance for children and young The objectives of the Association are to advance thepeople to make informed decisions about smoking and science and practice of Coloproctology, promote bestthe tobacco industry. They campaign vigorously to practice through advancement of education andincrease research funding and awareness about how to training; promote the most efficient and effective usedetect the early signs of lung cancer and produce a of healthcare resources; to provide and disseminaterange of information leaflets and resources for patients information and to promote study and research intoand their carers. coloproctology and facilitate the publication of thewww.roycastle.org useful results. www.acpgbi.org.ukBritish Lung FoundationThe British Lung Foundation (BLF) is the only UK charity Association of Breast Surgeryworking for everyone affected by lung disease. They This is a new association representing healthcarefocus on providing support for people affected by lung professionals treating malignant and benign breastdisease and through patient information leaflets and disease in the UK, Ireland and Worldwide. It focusescampaign to bring about positive change in lung on education, audit and guidelines.health and improving treatment, care and support for www.associationofbreastsurgery.org.ukpeople affected by lung disease. They run a patientsupport group Breath Easy, provide a helpline and BASO - The Association for Cancer Surgeryarrange meetings around the UK for patients to meet. This association represents surgeons from the UKwww.lunguk.org and Ireland and aim to promote the science and art of cancer surgery, for the benefit of the patient,Breakthrough Breast Cancer and to encourage and showcase cancer researchThis UK charity aims to save lives and change futures for public good.through research, campaigning and education to www.baso.org.ukremove the fear of breast cancer for good. They haveinformation and resources at: British Associate of Urological Surgeons (BAUS)www.breakthrough.org.uk This association aims are to promote the highest standard in the practice of Urology for the benefit ofMarie Curie Cancer Care patients. They have links to education and informationMarie Curie aim to support everyone with cancer and on prostate cancer. www.baus.org.ukother illnesses will have the high quality care andsupport they need at the end of their life in the place British Associate of Urological Nurses (BAUN)of their choice. Their website has a wide range of This association aims to promote and maintain theinformation and resources at: highest standards in the practice and development ofwww.mariecurie.org.uk urological nursing and urological patient care. www.baun.co.uk
    • 52 Useful resources National Lung Cancer Forum for Nurses Provide information to patients, carers and for health professionals whose work involves those with lung cancer. www.nlcfn.org.uk British Thoracic Oncology Group A multi-professional organisation dedicated to lung cancer and mesothelioma. It has an annual conference (January) which attracts speakers and delegates from around the world, not just the UK. It designs and develops clinical trials and runs a number of national educational events. www.BTOG.org British Thoracic Society A registered charity whose objective is to improve the standards of care of people who have respiratory diseases. The British Thoracic Society Lung Cancer and Mesothelioma Specialist Advisory Group have produced a guidance document, Giving Information to Lung Cancer Patients, to assist healthcare professionals in discussion of options for patients on the lung cancer pathway. www.brit-thoracic.org.uk
    • References 53References1. The National Cancer Survivorship Initiative 10. Assessment and Care Planning Lessons Vision, NCSI, 2010 Learned, NCSI, 2010 www.ncsi.org.uk/wp-content/uploads/NCSI-Vision- www.improvement.nhs.uk/cancer/survivorship/ Document.pdf documents/dh_ncsi/ACP_summary_review_011210.pdf2. Cancer Reform Strategy. Department of Health, 11. Treatment Record Summary Lessons Learned, 2007. NCSI, 2010 www.improvement.nhs.uk/cancer/survivorship/3. Improving outcomes: A strategy for cancer. documents/dh_ncsi/TRS_summary_review_120111.pdf Department of Health, 2011. 12. Benefits made clear, Macmillan, 20114. Evidence: Helping people to help themselves. www.macmillan.org.uk/HowWeCanHelp/FinancialS The Health Foundation, 2011. upport/BenefitsMadeClear.aspx5. Results of a Quantitative Survey to Explore 13. Guidance on the single assessment process for Both Perceptions of the Purposes of Follow-up older people, Department of Health, 2002 and Preferences for Methods of Follow-up Delivery Among Service Users, Primary Care 14. Valuing People: A new strategy for learning Practitioners and Specialist Clinicians after disability for the 21st Century, Department of Cancer Treatment. G. Frew et al, Clinical Health, 2001 Oncology 22 (2010) 874e884 15. A National Service Framework for Mental6. Making the cancer survivorship agenda a Health: modern standards and service models, reality – think tank event, NCSI, 2008 Department of Health,1999 www.improvement.nhs.uk/cancer/survivorship/docu ments/dh_ncsi/Think_Tank__Event__Final_Report_ 16. Early and locally advanced Breast Cancer, for_paticipants.pdf NICE, full guideline February 2009, revision decision date February 20127. Rapid Review of Follow up Practice in England, http://guidance.nice.org.uk/CG80 NHS Improvement, 2009 www.improvement.nhs.uk/cancer/survivorship/ 17. The Diagnosis and Management of Colorectal documents/nhsi/RRFU_inc_NAO_summaries.pdf Cancer, NICE draft guidance, March 2011. Final report due October 2011.8. The Improvement Story So Far, NHS www.nice.org.uk/nicemedia/live/11840/53846/538 Improvement, 2010 46.pdf www.improvement.nhs.uk/cancer/survivorship/ documents/nhsi/improvement_story_so_far.pdf 18. The diagnosis and treatment of lung cancer, (update of NICE clinical guideline 24) has recently9. Adult Survivorship Pilot Phase Picker been reviewed and published. Evaluation, Picker Institute, 2010 http://guidance.nice.org.uk/CG121 www.improvement.nhs.uk/cancer/survivorship/ documents/picker/Picker_evaluation_2010_Final_ 19. Prostate cancer: diagnosis and treatment, NICE, Report.pdf Guidance was produced in February 2008, Decision to review will be taken in July 2011. http://guidance.nice.org.uk/CG58
    • 54 Acknowledgement Acknowledgements Throughout the testing work and into this next phase, we continue to be grateful to all of our test sites for their tremendous commitment and hard work during the course of testing as part of the National Cancer Survivorship Initiative. Our thanks go to Professor Jane Maher and Dr Alastair Smith for their clinical leadership during the pilot phase over the last couple of years. The sites expertise and enthusiasm combined with excellent clinical leadership, service improvement leadership from the National Improvement Leads, support from the cancer networks, patient representatives and our NCSI partners have brought us to this exciting phase of testing with a wealth of experience, knowledge and skills to take this agenda forward in these challenging times - together. Thank you all again for your contribution. NHS Improvement - Adult Survivorship Team
    • NHS NHS ImprovementCANCERDIAGNOSTICS NHS Improvement NHS Improvement has over 10 years improvement experience. With our practical knowledge and ‘how to’ approach we help improve the quality and productivity of services through using innovative approaches as well as tried and testedHEART improvement methodology. Over the last 12 months we have tested, implemented, sustained and spread improvements with over 250 sites to assist in improving services in cancer,LUNG diagnostics, heart, lung and stroke. Working closely with the Department of Health, trusts, clinical networks, other health organisations and charities we have helped deliver key strategies and policies to improve the delivery and implementation of improved services for clinical teams and their patientsSTROKE across the NHS. NHS Improvement 3rd Floor | St John’s House | East Street | Leicester | LE1 6NB Telephone: 0116 222 5184 | Fax: 0116 222 5101 www.improvement.nhs.uk Delivering tomorrow’s ©NHS Improvement 2011 | All Rights Reserved Publication Ref: IMP/comms016 - May 2011 improvement agenda for the NHS