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Adult survivorship: from concept to innovation

Adult survivorship: from concept to innovation



The National Cancer Survivorship Initiative (NCSI) is a partnership between the Department of Health, Macmillan Cancer Support and NHS Improvement. As part of this initiative, NHS Improvement is ...

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



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    Adult survivorship: from concept to innovation Adult survivorship: from concept to innovation Document Transcript

    • NHSCANCER NHS Improvement CancerDIAGNOSTICSHEARTLUNGSTROKE Adult Survivorship FROM CONCEPT TO INNOVATION National Cancer Survivorship Initiative (NCSI): NHS NHS Improvement
    • ContentForeword 3Executive summary 4Introduction 7Remote monitoring 15Care coordination 23Evaluation 27• Findings from patient survey on follow up costs• Patient experience and reported outcomes of care baseline• Care coordination perception and preferenceBreast workstream 38Colorectal workstream 52Lung workstream 62Prostate workstream 74Next steps 86Conclusion 88
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipForewordAs pressures on our NHS continue to increase partly through the increase in cancer incidence andprevalence and the need to provide efficient service delivery and quality outcomes for patients, thecurrent traditional model is unsuitable and unsustainable in its current form. The traditional model offollow up is built on, in the majority of cases, a ‘one size fits all’ approach which does not account forthe specific needs of the individual following treatment for cancer. What is needed is a new model ofcare that promotes health and wellbeing and helps individuals move on with their lives followingtreatment for cancer, though the expectation for follow up should be set around time of diagnosis.The National Cancer Survivorship Initiative (NCSI) is a partnership between the Department of Health,Macmillan Cancer Support and NHS Improvement. As part of this initiative, NHS Improvement istesting approaches to care and support that ensures that we are moving to a position of not onlysupporting recovery from their disease, but also their future health and wellbeing through sustainingthat recovery. During the last few years a proof of principle has been established which if transferablefrom the test sites to other organisations will begin the process of spread across the NHS and providenational risk stratified effective pathways for breast, colorectal and prostate cancers.We now have the learning and evidence that it is possible to release significant outpatient capacity byrisk stratifying patients and supporting them through technology rather than following them up in anoutpatient setting which has cost implications for the patients and their families as well as the service.The hypothesis we set out three years ago has now been demonstrated, and as confidence in the newsystem builds so will the released capacity. However, it is not only about releasing capacity, it is alsoabout improving the patients experience and quality of life through treating them as individuals ratherthan as a disease. The evidence of the outcomes from this longer term gain will take time to accruedue to the very nature of survivorship. That being said, initial feedback from patients has been positiveand they feel better informed and more confident to make the choices that could impact on theirfuture health and wellbeing. Our expectation is that the positive outcomes and improved experiencewill be demonstrated through a follow-up survey that will be published in April 2012 and also throughthe National Cancer Survivorship Survey and the National Cancer Patient Survey.Commissioners and providers should embrace this work and proactively support the shift to a safe andeffective stratified model that meets patients’ needs. This will of course require a fundamental shift inhow care is commissioned, moving from spot buying activity to commissioning evidence basedpackages of care that can be effectively evaluated though outcomes achieved.Dr Janet WilliamsonNational Director, NHS Improvement 3
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship Executive summary As a partner in the National Cancer Survivorship Initiative (NCSI), NHS Improvement has led on redesigning pathways with NHS clinical teams to improve service delivery and support offered to improve the experience and reported outcomes of care for cancer patients following initial treatment. The mandate for this work was outlined as a key priority in the Cancer Reform Strategy (2007) and Improving Outcomes; a Strategy for Cancer (2011). Historically, patients completing treatment for cancer, have followed very traditional, ‘one size fits all’ follow up pathways over for two to five years or more. The increasing prevalence of cancer, through improved screening and awareness and the increasing number of survivors is increasing pressure upon already stretched services that we know cannot be sustained in the longer term. We also know through previous research and more recent patient surveys that patients report feeling abandoned at the end of treatment and can live with one or more unmet needs following completion of treatment. Something new and radical needs to be done to improve the experience and outcomes for patients and to address the increasing demand on healthcare resources.4
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipIn 2011, eight organisations working on The hypothesis for this recent phase offour cancer pathways across 14 tumour testing was that by introducing riskteams were selected to test whole new stratified care that meet patient needspathways of care with the focus on and that enable patients to self-manageintroducing risk stratified pathways and where appropriate, we would be able to:support packages that optimise self-management whilst improving the quality • Improve the patient experience andand effectiveness of the services provided. reported outcomes of care • Reduce follow up attendances by anThe belief was that the pathways would average of 50%provide a more flexible approach to follow • Contribute to a reduction in unplannedup that was tailored to individual needs. admissions.The emphasis would be on recovery andreablement, with individuals’ returning to For breast, colorectal and prostate cancersa ‘normal’ life as soon as possible and the emphasis has been on supportingmaintaining their recovery through patients to self-manage with remotesupported self management with timely monitoring replacing routine follow upaccess should problems occur. where appropriate. For the two lung sites the emphasis has been on enhancing theThis report brings together the learning services provided with a more proactiveand outcomes from this work that was a approach to the management tonatural progression from the previous symptoms and needs.phases of testing: Both qualitative and quantitative data has• 2008 - Scoping the potential been collected throughout this phase of• 2009 - Piloting elements of aftercare testing and we are especially grateful to services the test sites teams and colleagues within• 2010 - Development and testing in six Ipsos MORI for all their contributions to tumour areas: this work. • needs assessments and care plans • treatment summaries• 2011 - Developing and testing stratified pathways - four tumour areas. 5
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship The outcomes over the past year suggest Within this document you will find that the principle of stratifying patients sections on each tumour work stream, following completion of treatment is a section generic to all tumour sites on appropriate, acceptable and safe as long remote monitoring, care coordination, as monitoring and support systems are in evaluations associated with the testing place. From the data collected over six work and the plans for the next phase of months we know we are well on the way testing as we move to prototyping and to delivering the 50% reduction in spread across the NHS in England. outpatient activity across breast, prostate and colorectal cancer follow ups enabled Although difficult and challenging at through the provision (actual or planned) times, all the teams have contributed of remote monitoring systems to manage positively and effectively to this phase of patients at a distance. testing. The work has been supported by work streams within the National Cancer This release of capacity enables not only Survivorship Initiative, Macmillan Cancer improvements in the quality and Support, the Department of Health cancer experience of care for those with more team, and specialty specific charities such complex needs who need more time with as Breast Cancer Care, Beating Bowel the specialist team during their outpatient Cancer and The Prostate Cancer Charity. visits but also opportunities for new We are extremely grateful for everyone’s activity and improvements to access contribution to this programme of work waiting times. and for the learning shared over the past year. The contribution to reducing unplanned admissions in lung cancer sites has been around 6-8%; though there has been no contribution from the other tumour types that can be attributed to the pathway change. It is too early to evaluate the impact on patient experience and reported outcomes of care through a follow up survey to compare the new model of care against the baseline which is planned for early in 2013.6
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipIntroductionThe National Cancer Survivorship Initiative (NCSI) was set up as an outcomeof the Cancer Reform Strategy 2007 and remains a key component in theImproving Outcomes: a Strategy for Cancer (2011). As a partner within theNCSI, NHS Improvement has focused attention on supporting clinical teamswithin the NHS to test a new model of care for people living with and beyondcancer.The governance of this work programmeis through the NCSI Steering Group, theNational Cancer Programme Board andNHS Improvement Leadership Team.The overall direction of the work has beenled by an NHS Improvement Director andNational Clinical Lead, supported byNational Improvement Leads and NationalClinical Advisors.The clinical teams at a local level havebeen supported by Macmillan CancerSupport and key tumour specific charities;Breast Cancer Care, Beating BowelCancer, and The Prostate Cancer Charity.In 2009, 14 test sites teams were asked totest new approaches to aftercare support.A further 11 teams joined in 2010specifically to test assessment and careplanning and the use of treatmentsummaries at the end of treatment. Theprinciple organisations involved are listedon the following page: 7
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship Figure 1 Testing elements of survivorship care Testing assessment and care planning and support (2009/10) and treatment summaries (2010/11) East Kent Hospitals University NHS Ipswich Hospital NHS Trust Foundation Trust Brighton and Sussex University Hospitals Guys and St Thomas’ Hospital NHS NHS Trust Foundation Trust Poole Hospital NHS Foundation Trust University College London Hospitals NHS Foundation Trust The Royal Marsden NHS Foundation Trust South of Tyne and Wear NHS Trust The Hillingdon Hospital NHS Trust Velindre Hospital NHS Trust (2 projects) Sandwell and West Birmingham NHS Trust 3 Counties Cancer Network (Gloucestershire, Great Westerns Hospital NHS Foundation Trust Herefordshire & Worcestershire) Central South Coast Cancer Network Mount Vernon Cancer Network Hull and East Yorkshire Hospitals NHS Trust Luton PCT Hammersmith Hospital (Imperial College) North Trent Cancer Network NHS Trust The Christie NHS Foundation Trust Musgrove Park Hospital NHS Trust The Royal Free London NHS Foundation Trust Pan Birmingham Cancer Network North Bristol NHS Trust The Royal Bournemouth and Christchrch Hospitals NHS Foundation Trust8
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipIn 2011, eight teams developed andpiloted the whole pathways of care withclinical teams undertaking one or moretumour projects. Stratified pathways weredeveloped and tested by teams in fourtumour types; breast, colorectal, lung andprostate. The two enabling projects wereremote monitoring and care coordination.The work is shown pictorially below witha map of the test sites. Figure 2 Adult Pilot Sites - 4 Tumour 8 Test 2011/12 Workstreams Communities 1 Hull and East Yorkshire Hospitals NHS Trust 2 Salford Royal NHS Foundation Trust 1 3 Ipswich Hospital NHS Trust NHS Improvement 2 4 Luton and Dunstable Hospital Testing NHS Foundation Trust 5 North Bristol Hospital NHS Trust 6 Guy’s & St Thomas’ NHS 2 Enabling 14 Tumour Foundation Trust 3 Projects Projects 7 Hillingdon Hospital NHS Trust 4 8 Brighton and Sussex University Hospitals NHS Trust 6 7 5 8 9
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship The model of care, on which the stratified pathways of care are based, has been adapted from the long term conditions model and is shown in the figure 3 below: Figure 3 Regardless of whether individuals have This should take account of the disease, been treated with curative or palliative the treatment and its effects, and the intent, the same model should apply with individual’s personal circumstances. stratification into an appropriate level of Patients will move between the different care. levels of care as needs and degree of dependency change.10
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipThe testing hypothesis was that through Factors affecting ease of data collectionrisk stratifying into appropriate level(s) of and reliability were:care there would be: • The absence of coding within• An improvement in the experience and outpatients activity - patients with a patient reported outcomes of care from cancer diagnosis had to be identified by baseline clinic staff and manually recorded, or• A 50% reduction in outpatient assumptions needed to be made. attendances from the traditional model • Cancer patients are often seen in• A 10% reduction in unplanned general clinics (e.g. Urology) spread admissions from baseline. across multiple locations within Trusts rather than cancer specific clinics.From the testing how did we do with our • Little or no tracking, paper based ortesting hypothesis? electronic, of patients followed up in multiple Trusts, e.g. tertiary specialistA proof of principle has been established centres, DGH, primary care.that risk stratification is achievable and • The term ‘follow up’, in data definition,that remote monitoring is an appropriate includes all appointments following away of managing patients treated with new patient appointment. Patients maycurative intent with their cancer in have several ‘follow up’ appointmentsremission as an alternative to face-to-face before diagnosis and treatment takesconsultation. place. For this programme of work, we needed to collect data on follow upMost sites have stratified significant patients where initial treatment hasnumbers of patients on to self-managed been completed.pathways and data has been collected on • A few sites achieved limited roll out ofthese and reported within each work new pathway within their team. Forstream chapter. Where monthly data example in one site it was just thecollection proved impossible to collect a oncology team not the surgical follownumber of sites opted to undertake a one ups that were counted.month audit capturing as many patients • Variation in point of stratifying to self-as they could and stratifying, even managed pathway. Some patients werehypothetically, to the most appropriate stratified at the point they becamepathway. Data collection has therefore suitable for a self-managed pathwaybeen challenging and has been more others were several years into follow uprobust in some sites than others, therefore but could have been released earlier hadthe exact numbers of slots released the system been available.should be seen as an indication ratherthan an absolute. 11
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship For three of the tumour types, i.e. those testing will require data collection to where the majority have been treated continue in the longer term to ensure the with curative intent, there is optimism full impact of risk stratified pathways is that the 50% reduction in outpatient captured. attendances will be realised and exceeded though will be dependent on growing There is an assumption that all patients confidence in a robust remote monitoring will be offered an assessment and care solution and the reduction in backlog of plan at key points in their pathway and patients in the current traditional follow that they receive a treatment summary up system over the next few years. For that is updated and communicated after lung cancer patients there was not a each phase of treatment is completed. marked reduction in outpatient With the patient’s consent these should attendances though improvements in both be shared with those providing or processes and access offered patients supporting care delivery. However the more choice over when their reality in practice is that there has been appointments were scheduled. limited implementation of assessment and care planning. This difficulty has been due With regard to reducing unplanned to what appears to be a new service admissions, this was not proven in being implemented within current prostate, breast nor colorectal cancer. resource constraints. However there was a reduction of between 6-8% in the number of There is therefore a need to review emergency admissions for lung cancer existing job plans which will include patients, and in one site also a reduction shifting resources around the system in length of stay following an unplanned within the available financial envelope. admission. Evidence will be required to show the benefit to patients through positive We do not yet know the outcome of experience and improved reported whether there has been an improvement outcomes of care against the baseline. in the experience or reported outcomes of Assessing and planning for survivorship care but we are aware though the test care should begin at diagnosis and sites of encouraging comments of reviewed subsequently at key points in patients and professionals during the the pathway which will include the end of testing process. treatment, when stratified to appropriate aftercare pathway or when an event Given the lengthening time that people occurs that changes the management are now living following a cancer plan. Commissioning a bundle of care in diagnosis it is a given that evidence will the future where components are accrue over time. This current phase of specified within a contract may resolve come of the resource constraint issues.12
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship There will be support elements of the pathways which are unique to individual Key learning from teams on tumour types and other elements which implementing the pathways: are general. That being said there may • Ensure there is full clinical need to be investment in training and engagement and executive supervision of health care professionals in support for pathway changes the assessment of patients moving from even where follow up services recovery to sustaining that recovery are largely nurse led. through a focus on remote monitoring • Understand current follow up and promoting health and wellbeing. pathway before starting to implement changes. • Define and agree baseline measures for improvement as Key elements to support soon as possible. self-management: • Engage with patients – they will • Information and education tell you what it is like! appropriate to the individuals • Involve the wider team for needs. example allied health • Key contacts for care/support in professionals in developing the and out of hours for cancer and pathway. non-cancer related problems. • Review job plans to allow • Efficient and reliable processes sufficient time for the health for re-accessing the system, if needs assessments. required. • Be ready to provide training to • Effective remote monitoring as those who identify a need – not appropriate. everyone will have the skills and capability from the start. • Visit other teams in order to adopt and adapt their paperwork and processes. • Start small and increase scope as learning and confidence increases. • Use the key charities and those outside health such as local authority and voluntary sector – they have much to offer in relation to support.14
    • RECURRENCE /SYMPTOMS/ ABNORMAL TE STS Visit our website at: www.improvement.nhs.uk/cancer/survivorship SUPPORTED TIMELY RE-A SELF MANAG CCESS EMENT REMOTE MO NITORING PROFESSION CONSULTANT AL LED FOLL LE D CLINICAl Remote monitoring OW UP NURSE SPECIA LIST LEDE) REVIEW SUPPORTIVE TELEPHONE AND PALLIATI LED VE CARE Context and background PRIMARY There are many examples of how use of IT technology can improve the patientCARE LED experienceMDT and reduce follow TIO and END OF TRANSIup N TO associated costs. For those with long term conditions the LIFE CARE provision of telehealth equipment such as pulse oximetry, glucometers, PSYCHOLOGICAL blood pressure meters, is supported by e technology to transfer results to the professional is becoming more popular and enables care closer to home. The use and scope of CONTINENCE/Smedicine is telehealth TOMA growing rapidly and likely to have greater impact in future. PHYSIO NEEDS ASSESSMENT THERAPY/OC REVIEW CLINICAL CUPATIONAL THERAPY CARE PLAN SUPPORT SERVICES + During the Rapid Review of follow up DIET & NUTR ITION practice (2010), a few excellent examples SEXUAL ISSU TREATMENfound of where remote monitoring were T ES SUMMARY have been introduced successfully systems LYMPHOEDEM within cancer services but practice was AINICAL not widespread. In others, we found there SELF MANAGPPORT had been great interest in RM but EDUCATION & EMENT PROGR AMMESRVICES progress hampered by either local ITINFORMATION INFORMATIO architecture, IT development time, lack of N/EDUCATIO N DAYS full multidisciplinary teams (MDT) support INFORMATIOATION & or concerns around financial loss resulting N PRESCRIPTI ONSMATION from reduced outpatient activity. Of the PHYSICAL LOCAL AUTH monitoring systems identified some were ITY ACTIV O PRIVATELY LE RITY, COMMUNITY OR D EXERCISE SC built into existing IT systems, others as HEMES standalone databases but none were TRUST LED EXER ERCISE PROGRORT found to interface with all the relevant AMMESCES OTH Trust IT systems therefore necessitating ER SUPPORT REABLEMEN T/SOCIAL CA manual entry of data and consequentRVICES SE risk RE of transcription errors. Standalone FINANCE AN D BENEFITS systems are not always supported by local IT teams. VOCATIONA L REHA BILITATION COMPLEMEN TARY THERAP IES VOLUNTARY SECTOR/SUPP ORT GROUPS 15
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship The approach agreed within this project Consideration was given as to whether was to design a RM system that allowed RM should be primary or specialist care the cancer specialist to continue to based. For the following reasons the latter schedule and monitor simple tumour was agreed: marker and other routine tests without the need for associated face to face • On site remote monitoring systems follow up appointments. Results are read should allow interface with cancer by the specialist team and any signs of information and all other diagnostic recurrence rapidly picked up by the systems. specialist and referred to the MDT for • More patients are likely to be suitable advice if required. Remote monitoring in for being remote monitoring if results this context has little or no impact on are reviewed by the specialist. primary care demand. • Signs of recurrence can be investigated and addressed rapidly by the specialist The NCSI through NHS Improvement team without the need for referral. sponsored the development of two • Patients defaulting on tests will be remote monitoring modules, for prostate followed up rapidly. GP systems and colorectal cancer patients. This was generally have good scheduling systems done in partnership with North Bristol but not all have systems that track NHS Trust (NBT) and Royal United defaults. Hospitals Bath NHS Trust (RUH). The • Further treatment can be initiated functional requirements for both modules rapidly i.e. changes to hormone therapy. were developed by the project team (see • Many patients prefer to remain under appendix 1). The module design was the care of their cancer team especially based on the PSA tracker solution which following long and complex treatment originated in the urology department at and they know the team well. RUH. Both modules draw demographic • Not all GPs are aware of the and cancer specific information and test implications to changes in test results results from local IT systems. The modules and this can lead to delayed action or store a series of standard letters to enable unnecessary referrals. This perception rapid dissemination of results. The has led to reluctance by some specialists modules were developed during to release patients to primary care in the spring/summer 2011, released for testing past. in July and August and made available to Trust teams to implement soon after.16
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipTesting remote monitoring Progress and learning will continue to bewithin test sites monitored across all the sites and an evaluation of the patient experience ofAt the start of the programme all test being remotely monitored will be includedsites were given the option to either: in the repeat Ipsos MORI survey in 2013.Option 1 Implementation of all solutions has takenDevelop an in house remote monitoring much longer than expected and muchsystem. learning has been generated during this learning phaseOption 2Use the NCSI solution for either prostate, Main issues:colorectal or both. • IT resources – resources within all Trusts were limited with all having demandingOption 3 workload commitments that tookUse an external solution. higher priority than this project, e.g. Trust information governanceAll breast sites have implemented local requirements, several sites wereRM systems for mammography with the undergoing major IT system upgrades,exception of Hull team who have utilised one had had workforce numbersNBSS system (see below) for this. One site reduced and had difficulty appointinghas yet to resolve a process issue an IT project lead.regarding responsibility for reviewing • System implementation – details aroundresults and issuing of the reports to implementation for the NHSpatients. Improvement solution were unavailable until late summer and this led to poorAll but one of the six prostate sites understanding of the IT requirements(including the two associate sites at St and the benefits of the change until lateGeorges and Royal United Hospital Bath) into the project.opted to use the NCSI sponsored solution. • Two organisations required formalTo date four have installed the NSCI business case approval beforesolution and the remaining one aims to implementation process could bego live within the next 1-2 months. started. • The IT development team at NBT, whoOf the three colorectal sites, Guys and St were supporting installation and ITThomas’ and Salford opted to develop support to sites, were also undergoingtheir own in house solution and both of major system changes. This led to delaysthese are on schedule to go live spring in access advice and this reduced2012. NBT implemented the NCSI solution momentum in sites.in April 2012. 17
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship This work has highlighted the need to Results ensure that the costs associated with From the patients perspective there has managing patients remotely are discussed been overwhelming support for this as part of service commissioning. Any model of care. In at least three sites savings generated through reduced groups of patients have be asked for their outpatient clinics need to be off set views and they said that as long as they against the time and resources to support are informed, can have access to the this system. In Bath the clinical nurse specialist if they are worried and know specialist (CNS) has identified a need for that they are still ‘being kept an eye on‘ one CNS led session per week to support by their specialist team this model of care about 750 patients on remote will work well for them. monitoring. We have only just started to see the Other sites have opted for additional impact but already know that over a administrative support to the CNS. As well period of six months and across the as sending reminder letters to those who test sites of over 3,400 prospective have defaulted they can also print and appointment slots within prostate arrange postage of result letters and and colorectal cancer will or could be triage enquiries to the dedicated patient released as a result of using remote helpline. monitoring systems. Though this robust monitoring system those ‘lost’ to follow up should be greatly reduced. As practice embeds and confidence in this form of monitoring increases, there is expected to “Its better on both sides as be a steady rise in those enrolled to this model as those in current follow up are it saves time for everyone, transferred. After this, referrals are expected to plateau with patients and we don’t have to keep transferred when clinician and patient feel the time is right. coming up to the hospital” . Patient18
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipKey learning and top tips baseline of activity carefully whenThanks go particularly to the team at St setting the urology SLA. It is suggestedGeorges for their full evaluation report that in year one the number ofand feedback following implementation adjustment of new to follow up ratios isof the NCSI prostate module. agreed unless the Trust is confident it can deliver clinically and technically.• The project focus needs to be around • Beware of local geography and providing a service with which patients processing of samples. The NCSI and professionals should feel solution requires the PSA sample to be comfortable and that they feel improves processed within the local pathology the quality and effectiveness of care. It unit and recorded on the lab system for should not be seen as a cost cutting extract to the monitoring tool. Patients exercise. living on the periphery of the catchment• Project depends heavily on clinical area may have their phlebotomy involvement which can be an issue if samples measured elsewhere. This may workload is extremely heavy. Clinical limit the scope of the tool and has the leadership, time and enthusiasm are key potential to create a postcode selection levers to success. of which patients can be enrolled on the• Patient representation is essential for system. This may raise further issues as success and to challenge the team if pathology services are centralised to patient interests are not being fully major hubs. considered. Patients need to feel totally • Different laboratories may have different reassured if they are being asked to methods of analysing the test which move to a new system of follow up. means results can be misleading if• Stratified pathways can be introduced in compared one against another. Best to advance of the IT solution being in place be consistent if possible with samples or the full system integration being processed with the same kit on each complete. The module can run as a occasion. standalone database or using simple locally held spreadsheets held on the Recommendations and top tips Trust shared drive. • Baseline data - Ensure you have good• Early discussion should take place with baseline measures in place on current commissioners on the benefits and clinic and follow up numbers that you additional improvements that the RM can use to show improvements. Only system will bring for patients and how then will you be able to judge what for GPs it also reduces the need for difference the system has made. patients to see them. This encourages them to work with the Trust to properly fund follow up pathways. Consider the 19
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship • Project management – Plan the • Phlebotomy services - Meet early with project well – spend time considering primary care colleagues to discuss the requirements, responsibilities and implications relating to phlebotomy timescales and consider the risks and demand. Contracts relating to how you might mitigate against these. phlebotomy services vary with some GPs • Project team - ensure you have a funded to provide a service for GP strong clinical lead who will be able to related requests only whilst others motivate peers and who is prepared to funded to also cover hospital generated devote sufficient time to the project requests. activities. Ensure you have a good IT • Results – Aim for consistency over time manager on the team who has the using same analytic method for all test knowledge and authority to resolve IT results which will give an accurate issues that arise. trend. Where this is not possible, due to • Ensure sufficient resources are different analysis machine, lab results available to support the project and need to be given a corrected value so implementation. The suggested they are consistent in the trend analysis. resources from one site included suggested 20 days dedicated IT time, Other items to note: project management one day per week • CSV file extracts are available from for six months. North Bristol Trust to enable interface • Engage with stakeholders – patient between the Somerset Cancer Registry and GP representatives on the group System and the NCSI solution. A similar ensure that their interests are extract is available to provide the considered at every stage. interface with the InfoFlex clinical • Communicate the project within the information system. Specific Trust – keeping fellow clinicians, functionality has recently been colleagues and patients in the loop can introduced to the Infoflex system which help sell the benefits and raise will be available to those Trusts using awareness of what the Trust is trying to InfoFlex. achieve. • Teams should ensure governance procedures such as standard operating procedures are in place to support the remote monitoring systems.20
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipThe National Breast Screening Programmeservice uses the National Breast ScreeningSystem (NBSS) within 95 breast screeningunits across England. A definedpopulation of eligible women (aged 47 to70) are invited, through their GPpractices, for mammography screening.Women are invited to a local screeningunit, which can be hospital based, mobile,or permanently based in anotherconvenient location such as a shoppingcentre. The NBSS system is runindependently of other hospital systemsother than to interface with PACS for thegeneration of reports.In December 2011, the NHS Cancer In Ipswich, a referral form is completed atScreening Programme (NHSCSP) board the post surgery MDT and returned to theagreed to extend the use of the NBSS breast screening unit who book thesystem to non-screening sites allowing patient into a mammography follow upuse of parallel module of the NBSS system clinic on the hospital PAS system. A letterto schedule and monitor mammography inviting the patient is sent four weeksfor patients who have been treated for before the first test is due and subsequentcancer. No charge is made for using the appointments made each time the patientsystem however organisations are attends. This continues annually for fiveexpected to fund any additional licenses, years after which women between 47 -70support and operational resources. years will be transferred to the breast screening programme and those under 47Further information on this is available with continue mammograms annuallyby contacting Sarah Sellars at: until screening age is reached. Allsarah.sellars@cancerscreening.nhs.uk. mammograms are double read by screening radiologists and results sent toThree of the five breast sites (Ipswich, the patients via a standardised letterBristol, Hillingdon) already had in house generated from PAS and copied to thesystems established for managing annual specialist and the GP. If a radiologicalmammography. abnormality is reported the case is discussed and the patient recalled to the screening unit for further investigation. 21
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship In Hull, an automated recall system for mammograms has been set up using the NBSS system above and is run by staff within the Hull and East Yorkshire Hospitals NHS Trust Breast Unit. The first patients are now starting to be recalled through this system. Next steps Discussions are taking place with other system suppliers to explore the potential to develop integral monitoring functionality to avoid some of the difficulties associated with interfacing the systems. Learning from this work is still on-going. For new sites the following documents may be useful: • Sample business case for remote monitoring. • Example ‘Standard Operating Procedure.’ • Introductory letters for patients and GP. • Case study report – St Georges Hospital. • Implementation guide – prostate and colorectal modules. • To see dummy version of the NCSI modules visit: www.westbrookprojects.com/crm/ Login.aspx user name: tracking, password: tracking.22
    • RECURRENCE /SYMPTOMS/ ABNORMAL TE STS Visit our website at: www.improvement.nhs.uk/cancer/survivorship SUPPORTED TIMELY RE-A SELF MANAG CCESS EMENT REMOTE MO NITORING PROFESSION CONSULTANT AL LED FOLL LE D CLINICAl Care coordination OW UP NURSE SPECIA LIST LEDE) REVIEW SUPPORTIVE TELEPHONE AND PALLIATI LED VE CARE Care coordination is the seamless experience of care which encompasses information and PRIM communication between patients, their carers and providers, and between ARY CARE LED those providingMDT services across TRthe whole patient pathway. It is therefore a function to ensure that as far as ANSITION TO END OF LIFE CARE PSYCHOLOGI possible those who will be working in partnership with patients have access to appropriateCAL information (with the patients consent) to provide an effective service. Care coordination is CONTINENCE not one person’s role, job or responsibility. It is the joining up of services, coordinating /STOMA information and communication between patients their carers and professionals to ensure NEEDS PHYSIOTHER ASSESSMreceive or can access services whenCL REVIEW APY/OCCUPA they ENT CARE they AL INIC need them. TIONAL THER APY PLAN SUPPORT SERVICES + An evaluation was commissioned through DIET & NUTR ITION Ipsos MORI and has recently been SEXUAL ISSU TREATMENT ES completed. The purpose of the evaluation SUMMARY was to find out find out from patients and LYMPHOEDEM A professionals what their experiences andINICALPPORT expectations of care coordinate are. A SELF MANAG EMENT PROGR EDRVICES summary of this qualitative survey can UCATION & be INFORMATIO AMMES N found in the evaluation section of this INFORMATIO N/EDUCATIO N DAYS report. INFORMATIOATION & N PRESCRIPTI ONSMATION The guiding principles of care coordination are: PHYSICAL LOCAL AUTH ACTIV O PRIVATELY LE RITY, COMMUNITY OR • Good communication and professional ITY D EXERCISE SC HEMES relationships, formal and informal, TRUST LED EXER between the patient, their carer/family ERCISE PROGR AMMESORTCES and the care or support team. OTHER • Proactive and prompt access and SUPPORT REABLEMEN T/SOCIAL CA SERVICES RE intervention when needed. • Appropriate provision of correct FINANCE AN D BENEFITS information to enable individual choice VOCATIONA and control. L REHA BILITATION • Proactive monitoring as necessary COMPLEMEN (remote monitoring where possible). TARY THERAP IES VOLUNTARY SECTOR/SUPP ORT GROUPS 23
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship • Transition of care along the pathway information and advice they receive. To should appear seamless to the person overcome this skills deficit, training was receiving the care. arranged through the assessment and • Provision of correct information for care planning project lead to provide healthcare professionals to support CNS’s with skills around motivational effective patient management in the interviewing, and use of the assessment event of care delivery away from their tools. All of the test sites took up the usual care team e.g. hand held record. offer of training in motivational interviewing (working with patients to set The key areas of care coordination goals to help enable self-management), addressed during this phase have been: with several sites taking up the offer of • Assessment and care planning including assessment skills training with particular treatment summaries. focus on managing distress. • Information, education and advice. • Self-management and timely re-access. Challenges arose where CNS’s in • Working across care sectors and particular were required to undertake a organisations. more structured form of assessment and care planning at the end of treatment Assessment and care planning where this may have been the first time a including treatment summaries formal holistic assessment and care planning session with the patient NHS Improvement has worked with the happened. There was also the potential NCSI project manager leading on for inequity where CNS’s were unable to assessment and care planning to ensure see all patients and to offer them support that there was cohesion between the at the key areas of the pathway. A way to development and application of the reduce the resource demand at the end of different tools. The key areas of focus treatment is to undertake an assessment were to test in practice the assessment and commence the written care plan at and care planning tools and the use of a diagnosis, update during treatment and treatment record summary. review it at the end of treatment or at key stages when changes in the patients There were a number of clinical condition occurs, or the management professionals who felt that their current plan changes. skill-set had not prepared them for the change in the conversation or in use of The Distress Thermometer was chosen as the assessment tools; moving from the the self-assessment tool of choice that patient as a passive recipient to one who would inform the assessment needs identifies their own needs and makes discussion with the patient. Following choices and takes control of managing patient feedback and the perceived their own health based on the negativity of the word distress, a number24
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipof sites supported the redesign of the tool The uptake on the information days wasas a ‘Concerns Checklist’ or similar. The between 30-50% of those invited.use of self-assessment by patients has Evaluation of why people didn’t attendraised awareness of patient need and was that they didn’t feed they needed it,provides the framework for discussion or the timing was inconvenient. Some ofand resolving the concerns raised. those who attended the information days went on to attend one of the courses.The treatment summary gives informationon diagnosis, treatment, the clinical The information days in Ipswich havemanagement plan and includes signs and proved popular for those reluctant tosymptoms to look out for. (The care plan undertake the ‘moving on’ course.may be integrated into the document or However some of those attending themay be a separate document) information day went on to attend theThe impending launch of electronic ‘moving on’ course. The moving onversions of the treatment summary within course runs weekly with 12 places onthe Somerset and InfoFlex systems should each course. The course runs for fourhelp the completion of these by the weeks with a two and a half hourclinical teams. commitment a week. The course includes, self-management strategies, goal setting INFORMATION/EDUCATION DAYS and many of the common issues and concerns raised by cancer patientsThe focus of this work has been on following initial treatment and longer temproviding information, education advice concerns.and support to enable patients to buildskills and gain the confidence to self-manage with support. This can bedelivered by a variety of methods and thechosen method of delivery will depend on “I didn’t think I needed anyindividual patient needs. These include1:1 discussions, information prescriptions more information, how wrongand booklets, group information sessions,health and wellbeing clinics, and courses. I was. I had my head in the sand. Now I feel confident toIn Bristol there were a number ofapproaches ranging from ½ day ‘living take charge and know wherewell’ information days, self-managementcourses taking a cognitive behavioural to get help if I need it.”therapy (CBT) approach, residential livingwell courses in partnership with Penny PatientBrohn Cancer Care. 25
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship “The most surprising and pleasing thing about this project was discovering what facilities already existed in the community and that by exploring these and networking with providers we could greatly enhance our service simply by being aware of existing external services and using them properly.” Healthcare Professional Working across care sectors and This is where patients who have a written organisations record of their diagnosis, treatment and Building relationships and networks is future plan within a hand or electronic crucial to improving care coordination – record is helpful in avoiding duplication of not just within the NHS, but beyond to effort and the patient or carer can supply social care, charities, community care the context behind the written record. providers and other agencies that meet This will help to facilitate efficient the needs of individuals. As has been transfers of care throughout the pathway, reflected back to us during this testing wherever they occur, whether to phase it is the quality of the vocational rehabilitation, physiotherapy, conversation/discussion between voluntary services, social care, or end of professionals and patients/carers and life care. between professionals in different settings that reap greater benefit than checklists or paper as understanding comes from the context rather than just the written record.26
    • RECURRENCE /SYMPTOMS/ ABNORMAL TE STS Visit our website at: www.improvement.nhs.uk/cancer/survivorship SUPPORTED TIMELY RE-A SELF MANAG CCESS EMENT REMOTE MO NITORING PROFESSION CONSULTANT AL LED FOLL LE D CLINICAl Evaluation OW UP NURSE SPECIA LIST LEDE) REVIEW SUPPORTIVE TELEPHONE AND PALLIATI LED VE CARE Evaluation findings from patient survey on follow up costs PRIM A prospective patient survey was carried out in 12 organisations during theARY CARE LEof summer DMDT 2010. The purpose of the END OF was to understand the non-healthcare economic cost to TRANSITION TO survey LI FE CARE PSYCHOLOadults those attending outpatient visits. There were 837 returned questionnaires from GICAL attending outpatient appointments following treatment for either prostate, breast, CONTINENCE colorectal or head and neck cancer. /STOMA NEEDS PHYSIOTHER ASSESSMENT REVIEW APY/OCCUPA CL TION AL The key findings from the N CARE PLA survey were: SUINICA• 38% of L PPORT respondents reported being THERAPY • The average non-healthcare economicSERVICES seen by another healthcareNUTRITIO DIET & practitioner + of a single clinic visit ranged from cost since their previous clinic, although N £21 to £54 across the hospitals TREATMENT again some of these consultations will SEXUAL ISSU ES surveyed, mostly driven by time taken SUMMARY be unrelated to cancer. The percentage off work. The overall average was £41. varied from 29% to 55% across A LYMPHOEDEMINICAL • These average costs ranged from £227 hospitals. SELF MANPPORT to £857 when calculated for all clinicUCA ED • 23% of respondents AGEMENT PROGRAM reported attendingRVICES TION & MES visits over five years. The overall average ATION another (potentially unrelated) specialist INFORM IN was £437. clinic since theirFORMATION/appointment, previous EDUCATION DA YS • 24% of respondents reported new varying from 16% to 29% across INFORMATIOATION & symptoms that they had not yet hospitals. N PRESCRIPTI ONSMATION discussed, with higher percentages in • Most patients travelled by car to their PHYSICA prostate and colorectal, and some ACTIVITYL appointment, CAATAUthe RITY, COMMUNIT LO L PRIV ELY LE notable with THO D EXERCISE SC Y OR lower percentages in breast. exception of Guy’s and St. Thomas’MES HE • 71% of respondents had seen their GP where 87% of patients used public TRUST LED EXER ERCISE PROGRORT at least once since their previous transport. Journey times were half an AMMESCES appointment, although some of these OTHER hour on average, ranging from 15 SUPPORT REABLEMEN GP visits will be unrelated to cancer.RVICES The T/SOCIAL CA minutes to 51 minutes across hospitals. SE RE average number of GP visits varied from • Only a small number of patients FINANCE AN 1.8 to 4.2 across the hospitals surveyed, D BENEFI stressful, reported that their journey wasTS equivalent to an economic cost of £65 leading to an average score of 2 (where VOCATIONA L REHA LITA to £148 (overall average: 2.7 visits with 1 is least stressful and 10 isBImostON TI an economic cost of £95). stressful). COM PLEMENTARY THERAPIES VOLUNTARY SECTOR/SUPP ORT GROUPS 27
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship • Waiting room times varied significantly between hospitals, with averages of between 16 minutes and one hour and an overall average of half an hour. • Taking into account days off work taken by both the patient and those accompanying them, each appointment is associated with around one quarter of a day off work. At the average wage rate, this is equivalent to an economic cost of £25. • Few patients reported the overall stress of their visit to be high, leading to an average score of around 3 (where 1 is least stressful and 10 is most stressful).28
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipTest site baseline quantitative and qualitativeevaluation of aftercare service provision for patientswith breast, colorectal or prostate cancersThe evaluation consisted of two elements:• A quantitative baseline survey to • A qualitative and in-depth study to collect robust data on patient explore patients’ experiences of care experience and reported outcome coordination and understand their of care and support. personal journey along the new risk The full report can be found at: stratified pathway, as well as staff www.improvement.nhs.uk/cancer/ perceptions of how this is working. The survivorship report contains findings from the qualitative study, focusing on perceptions and experiences of care coordination at eight Test Communities (TCs), who were piloting the new risk stratified pathways. Interviews were conducted with patients and staff at each of the TCs and with four representatives from national cancer charities. The report can be found at: www.improvement.nhs.uk/cancer/ survivorship 29
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship Quantitative baseline survey on patient experience and reported outcomes of care and support SUMMARY REPORT KEY FINDINGS: This report presents the findings from the 1. 58% rated their care as very first wave of a service evaluation study good or excellent. commissioned by NHS Improvement, which 2. 78% felt they had all the aims to provide a baseline for the 11 information advice and support tumour projects within the seven Test they needed to manage their Communities (TCs) who tested a new health. model of care which included risk stratified 3. 37% did not feel they had all care pathways in Adult Cancer Survivorship the information they needed services, as part of the National Cancer to identify signs and symptoms Survivorship Initiative. of recurrence. 4. 83% felt confident to manage their own health. The research was conducted using a 5. 42% had taken action quantitative methodology. A 12-page themselves to do more physical postal questionnaire was sent to 1,862 activity. eligible patients across 11 tumour projects 6. Only 12% who had experienced at 7 TCs. A total of 1,301 completed a fear that cancer will come questionnaires were received back, back have been able to take representing an adjusted response rate of action themselves. 70%. 7. Only 5% who have problems with erectile function have Overall quality of care taken action themselves; 45% who have not taken action Overall, patients were positive about the continue to have problems. quality of care and services they had 8. 21% patients reported having received, since their initial treatment a care plan and 84% of those finished. Almost six in ten (59%) rated it as found it useful. ‘very good’ or ‘excellent’. However, with 9. 77% of patients knew who to the service provided to patients particularly contact in office hours. 71% important, the six percent of patients who had contacted a healthcare felt that they had received, at best, a poor professional. service should not be overlooked. 10. 38% of patients knew who to contact out of office hours another 20% knew how to find out. Only 14% had had to make contact.30
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipIn particular, prostate cancer patients were Only a very small proportion of patientsless likely to say that they had received a (5%) said that they have received any‘very good’ or ‘excellent’ service. Only half information too late for it to be of use.reported this (53%), compared to two-thirds (66%) of colorectal cancer and Self-managed carethree-fifths (61%) of breast cancer Overall, a large majority of patients (83%)patients. said that they were confident managing their own health.Patients cited a range of issues that couldlead to improvements in overall care, such Across a range of problems that patientsas more information or advice (9%) or had experienced, either since their initialimprovements to care, aftercare or care diagnosis for cancer or since their initialplan (5%). treatment had finished, patients displayed a greater ability to self-manage somePatients’ need for advice and support problems.Positively, almost eight in ten patients feltthat they did have all the information, For example, more than four in tenadvice and support they needed in order to patients (42%) who did less physicalmanage their health (78%). activity or exercise, since their diagnosis, had taken action themselves to do more.Beyond this, large proportions of patientshad not had, but did not need information, Similarly, a third (34%) of patients who hadadvice or support to: noticed a change in their weight,• Help them to continue living in their compared to pre-diagnosis, had taken own home (74%). action themselves to deal with this.• Cope with their financial issues (71%).• Help them with the other practical However, patients are much less able to things (71%). deal with some other issues, namely: Around one in eight (12%) who haveHowever, there appears to be an experienced a fear that the cancer willinformation deficit in terms of providing come back have dealt with this bypatients with all the information they need themselves.about the signs of symptoms of the cancer.More than one third (37%) did not feelthat they had all the information they needto identify the signs of symptoms. 31
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship Only one in ten (10%) experiencing a Almost half of patients (47%) had change in their interest in sex (that they contacted somebody during office hours – were not happy with) have taken action and seven in ten (71%) had contacted their themselves to improve this. cancer hospital nurse, whilst two-fifths (38%) have contacted their GP. Just five-percent (5%) of patients who have had problems with erectile function When it comes to contact out of hours, a since before their diagnosis have taken much lower proportion of patients said action themselves. they do know who to contact (only 38%), although one in five (20%) do know how Indeed, more than four in ten (45%) of to find out. Only one in seven (14%) had patients who have experienced erectile ever had to contact somebody out of office function problems since their diagnosis hours with a concern related to their have not done anything in particular and cancer or their treatment for it. Almost six continued to have problems. in ten (59%) had contacted the hospital whilst approaching three in ten (28%) had Contact with health professionals contacted their GP or out of hours service. Only around one in five (21%) patients reported having a care plan. However, of More than half of patients (53%) had not those who did have a care plan, the contacted their GP in the last six months overwhelming majority (84%) did say that with a concern about their cancer or it is useful. The presence of a care plan is a treatment for it, whilst 38% had done so factor in a number of different aspects of between one and five times. patients’ experience of aftercare services. Over three-quarters of patients (77%) said they did know who to contact during office hours if they have a concern related to their cancer or their treatment for it, and a further ten per cent said they do not know, but would know how to find out.32
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipQualitative and in-depth study to explore patients’experiences of care coordination SUMMARY REPORT KEY FINDINGS: Implementation of the vision 1. Professionals supportive of risk The interviews with project managers and stratification as good for staff showed that implementation of the patients helping them to move vision and the approach to risk on. stratification had varied locally. 2. Good communication seen as central to patient experience. At the time of the study, most TCs had 3. Relationship between patient started to stratify patients and had moved and professional key to some patients on to a self-managed patients’ perception of care pathway. As such, some had replaced coordination. consultant led follow up appointments 4. Important for patients to know who to contact when problems with nurse led follow up (either in person occur. or over the telephone) and were using 5. Some patients did not report remote monitoring where possible. problems as they thought they were not serious enough, or The TCs were carrying out assessments and nothing could be done to care planning with their patients; resolve the problems. sometimes this was offered to patients at 6. Monitoring is key to providing the beginning of treatment, sometimes safety net for patients. post treatment. They had also developed 7. Some patients concerned they and expanded the information and would not recognise signs and symptoms of recurrence. education they were providing to patients, 8. Further work is required to often through the use of information days ensure healthcare professionals and self-management programmes. are confident. 33
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship Staff were very supportive of risk Good communication and stratification – they thought it was good relationships: for all patients, because those that were • While staff saw good communication self-managed would be empowered to between patients and professionals as move on with their lives, while those on generally important, they emphasised its professionally led pathways or still in role in promoting self-management to treatment would benefit from more time patients in a positive manner. with consultants. Most said that patients • Patients placed a great deal of reacted well to the idea of self- importance on how staff communicated management if it was explained properly with them. and introduced at an appropriate point so • Clear and comprehensive explanations that it did not contrast with their about their care meant that they could expectations for aftercare; several nurses be involved as much as they wanted to suggested that only new patients should be in decisions about their care and they be moved on to a self-management reassured them about what was pathway. There were, however, some happening. Experiences were largely queries about how stratification decisions positive, but when communications were were being made locally and some not good, patients did start to question concerns about the need for increased whether their care was being coordinated resources for assessment and care properly. planning. • The relationship between patients and the healthcare professionals was Care coordination particularly key to patients’ perceptions Patients, staff and charity contacts were of care coordination. They often saw the asked for their thoughts on what Clinical Nurse Specialist (CNS) as their constituted good care coordination. care coordinator; it was this person that Patients and staff were also asked about acted as the ‘thread’ that ran through their own perceptions and experiences of their aftercare, reassuring them that they care coordination within the TCs and these were in safe hands. have been considered under headings that broadly follow the guiding principles for care coordination produced by NHS Improvement:34
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipProactive and prompt access when Proactive monitoring as needed:needed: • The TCs had not yet been able to fully• Staff and charity contacts welcomed a implement remote monitoring systems greater focus on assessment and care due to. planning, and staff gave examples of • IT issues. In some cases this had where new services had been developed prevented the TCs from moving people as a result of unmet needs being on to self-managed pathways. identified in the assessments. Some staff • Monitoring was extremely important for said that they were now aware of, and patients as a key safety measure. For using, a wider range of existing services those patients on a self-managed to meet their patients‟ needs. The need pathway, their greatest concerns were to make better use of community based related to their cancer returning, and services, including those provided by the recognising the signs and symptoms of voluntary sector was emphasised by their cancer returning. charity contacts in particular. • Patient comments indicate a lack in• Some staff mentioned frustrations where confidence to handle this by themselves relevant services were not always without regular follow ups. Knowing that available, although this may be due to a someone was looking at the results of lack of awareness around the services their scan or blood test was often the available or where to find more reassurance they needed. information about them.• Most importantly for patients, they Seamless delivery of care along the wanted to know who to contact in the pathway: case of problems. In most cases, this was • Cross site working did not appear to the CNS and where they had contacted worry patients, as long as the person them, this had generally been a smooth they were seeing was fully informed process, with a few exceptions. about their care. A greater problem was• Some patients said that they hadn’t the transition from treatment to made contact with the CNS or any other aftercare. Rather than appearing professional, despite having concerns or seamless, several talked about the queries. This was often because they emotional impact of moving to little or thought their problem wasn’t sufficiently no contact after the intensity of their serious, or that there was nothing that treatment. It was at this point that they could be done about it. were most likely to question the coordination of their care. 35
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship • Staff and charity contacts discussed the • Patients generally thought that their GPs delivery of care across primary and were well informed about their cancer secondary care. They generally thought and its treatment – though, in line with that it was not well coordinated. Patients the earlier point, they did not expect gave a few examples of where they had them to be particularly well versed in faced problems and where the respective managing their cancer. services had not been well joined up. However, most patients had not tried to Potential enablers to good talk to their GP about their cancer. Staff coordination and charity contacts picked up on this As discussed above, for patients, often the point, as several thought that there greatest contributor to good care should be an enhanced role for primary coordination was the CNS. This person was care in coordinating aftercare services, their point of contact who answered their but they thought there was some queries, referred them on, or signposted resistance to this. They attributed this to them to, other services and was their route a perception of cancer as a specialist back into the system if necessary. condition. Staff and charity contacts were more likely Information for effective patient to see assessment and care planning as the management: key to successful care coordination. This • All participants agreed that the allowed them to understand their patients‟ information flow between services and needs and ensure that these were met, and professionals was critical to good care to establish the patient’s ability to self- coordination. For patients, it was manage. Finally, all TCs had expanded the important that the person caring for information and training given to patients. them knew their medical history. Their However, some staff felt this did not yet go experiences were generally good, but far enough. They wanted to see the tone where it had gone wrong, it severely shift to have a more inspirational focus, eroded their confidence in the system. rather than simply providing information Hand held records did not appear to be about services. While they felt that it was widely used, but patients valued them important that patients had access to when they were used. information about the support available to them so that they could coordinate their own care, staff thought it more important that patients were given the skills and confidence to take on this responsibility.36
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipBarriers to good care coordination Evaluation conclusionBarriers to good care coordination The baseline evaluations have given us a(particularly within the new risk stratified rounded view of the implications of followpathways) were discussed in terms of up on patients and where we need tostructural, cultural and resourcing issues. make improvement to effectively meetWhile some of the structural barriers their needs and that the costs they incurrelated specifically to changes within a TC add value to them and how they manageat the time of the pilot, others have wider their health. A follow up evaluation will beimplications. These related to the carried out to ensure that the changedchallenges of implementing new ways of pathways have had a positive impact ofworking within established structures and those living with and beyond cancer.systems. Linked to this were culturalbarriers; many staff acknowledged that thenew risk stratified pathways required a verydifferent way of working and thinking forall concerned. Self-management wouldrequire a shift from a culture ofdependency and reliance on professionalstowards self-reliance and responsibility.Finally, some staff highlighted theresourcing issues associated with riskstratification and the impact these couldhave on effective care coordination. Theyfelt there was a need to think aboutmoving resource around the system toaddress the points of greater demand, forexample, from follow up appointments toassessment and care planning. 37
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipBREAST BREAST workstream KEY HEADLINES FROM TESTING: • Self-managed follow up is acceptable and safe for breast cancer patients. • From the data collected 75-80% patients appear to be suitable for a supported self-managed pathway one year after diagnosis and following completion of treatment (surgery and/or adjuvant therapies) and holistic needs assessment. • Various systems for remote surveillance with annual mammography are currently in use with recall to the diagnostic clinic if problem found. • Key enablers for self-management are continued access to breast care nurses with direct access to specialists if required. • GPs can be advised to stop hormone therapy when required rather than recall or re refer to clinic at five years. • Patients raise issues during needs assessments not normally discussed in routine outpatient consultations. For example sexual issues appear to have been hugely under reported within the traditional follow up model. • Educational and Information events are cost effective and offer value to patients. • A survey to ascertain the personal cost to breast cancer patients to attend an outpatient appointment was average £41 per visit (travel, parking, time off work)1. • The Ipsos MORI baseline survey2 found that breast cancer patients wanted more advice on coping with fatigue and sleep disturbance, and better information on signs and symptoms of recurrence. • Trusts should agree with commissioners the process for re-accessing to the service if suspicion of recurrence or other needs arise. The process should aim to minimise delays and avoid unnecessary steps. • Shifting resources from medical to nursing staff may be required to support additional health needs assessments and education initiatives. • Care pathways need to be reinforced at induction courses for medical and nursing staff. • Self-management pathways represent a significant change in practice. Scepticism can be high amongst clinical teams but when rationale is properly explained the majority became supportive. 1 Department of Health and NHS Improvement: Survey of patients in follow up clinics (October 2010) 2 Ipso MORI Social Research Institute - NCSIEvaluation of Adult Cancer Aftercare Services- Wave 1 Report (28 October 2011)38
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship1. Background and context - breastcancer ‘People having treatment forBreast cancer survival has been improvingfor the past 20 years with current five year early breast cancer are offeredsurvival currently standing at over 80%. personalised information andResearchers at Cancer Research UK predictthat 64% of women diagnosed recently support, including a writtenwith breast cancer will live for at least 20years. follow up care plan and detailsThe traditional model of follow up of of how to contact a namedbreast cancer patients has been to offerregular clinical review in the outpatient healthcare professional.’clinic over a period of 3-5 years prior to NICE Quality Standarddischarge to the GP. We know thatdetection of recurrence is sometimesdelayed where problems present in The supporting guideline states:between appointments and worrying • ‘Patients in remission treated for breastsymptoms and signs are not recognised by cancer should have an agreed, writtenthe patient.3 care plan, which should be recorded by a named healthcare professional (orIncreasing demand within often large busy professionals), a copy sent to the GP andand overbooked clinics means that staff do a personal copy given to the patient. Thisnot always have sufficient time to assess plan should include:and support patients who may still have • designated named healthcarecomplex emotional and psychosocial needs professionals;after their treatment has ended. • dates for review of any adjuvant therapy;The NICE quality standards for breast • details of surveillance mammography;cancer4 and the NICE clinical guideline5 • signs and symptoms to look for andto which the standard refers state the seek advice on;following in respect to follow up of breast • contact details for immediate referral tocancer patients: specialist care; and • contact details for support services, for example support for patients with lymphoedema.’3 Donnelly, J., Mack, P., and Donaldson, L.A. (2001). Follow up of breast cancer: time for a new approach? IJCP, 55: (7), 431-34 NICE Breast cancer quality standard(29 September 2011)5 NICE Clinical Guideline CG80 - Early and locally advanced breast cancer - Diagnosis and treatment. Published February 2009 39
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship On clinical follow up, NICE guidance states: ‘After completion of adjuvant treatment (including chemotherapy, and/or radiotherapy where indicated) for early breast cancer, discuss with patients where they would like follow up to be undertaken. They may choose to receive follow up care in primary, secondary, or shared care’ Five breast teams were selected to join the programme in January 2011 to test the following hypothesis: By introducing risk stratified pathways of care for patients following a diagnosis of breast cancer there will be: • an improvement in the experience and patient reported outcomes of care; • a 70% reduction of outpatient attendances from the traditional model of five years of annual follow ups; and • a 10% reduction in unplanned admissions. All teams have actively involved patient groups and patient volunteers to participate in the change process and advise professionals on the best approaches40
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship2. Team profiles and baseline positionFive breast teams were selected inHillingdon, Ipswich, Hull, North Bristol andBrighton. New breast Follow up Comments referrals p.a attendance Hillingdon 148 8 OPA over 5 years 60-65% of patients were on open access pathway from the start of the project Ipswich 300 9 OPA over 5 years 70% of low risk patients discharged after three years North Bristol 382 4 OPA over 5 years Brighton 223 9 OPA over 5 years Hull 174 6 OPA over 5 yearsSeveral teams prior to this programme had Whilst early discharge from outpatientalready started to reduce the period of follow up had been implemented in somefollow up and some already had systems in Trusts all were keen to provide a moreplace for regular mammography formalised approach to holistic needssurveillance with results by post rather assessment; to develop the treatmentthan at an outpatient clinic. summary and care plan; and improve information, education and supportAt Hillingdon, the team has offered a self- services for patients.managed follow up model of careimmediately following end of treatment for During summer 2011, Ipsos MORIthe past eight years with on-going undertook a quantitative baseline patienttelephone support from the CNS and direct experience and outcome survey6 amongstaccess back to the surgical oncology breast breast cancer patients from the test sitesteam if required. In Ipswich about 70% of who were between six months and twolow risk patients were already offered self- years post treatment. 589 survey responsesmanagement at two years. were returned representing a response rate of 70%.6Ipsos MORI Evaluation of Adult Cancer Aftercare Services - Wave 1 Report, October 2011 - Breast 41
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship The main problems affecting breast Testing demonstrated there were just two cancer patients were: pathways in practice for breast cancer • Fatigue and sleep issues; patients with 75% suitable for self- • Insufficient information on signs and management and 25% to continue to symptoms of recurrence; and need professional led follow up. The teams • Fear of recurrence. also agreed that more of an ‘opt out’ approach should be taken i.e. All patients Project workstreams should be offered a self-managed pathway Work programmes in each test site focused unless complex criteria applied. on the following areas: • Risk stratification – criteria and process Clearly circumstances will differ and it will • Holistic needs assessment, written care always be a joint decision between the plans and treatment summaries patient and the team as to which pathway • Education and information is the right one for the individual. Some • Support services low risk patients prefer to continue with • Mammography screening. face to face appointments and others, however poor the prognosis may opt for a 3. Actions and outcomes self-managed pathway only contacting the Risk stratification specialist when they feel they need to. During summer 2010 a group of leading clinicians suggested there may be three Patients not normally eligible for a self- possible pathways for breast cancer managed pathway would be those who patients following completion of are: treatment: • On active treatment 1. Supported self-management pathway • With advanced or metastatic disease (green) with 70% expected to be • Holistic needs assessment score with suitable; remaining high levels of psychological 2. A shared care pathway (amber) for 10% distress patients; and • On-going side effects of treatment 3. A complex care pathway (red) for the • Language, educational or social issues remaining 20%. that make the individual unsuitable or unable to self-manage • Patients who choose not to self-manage • Patients on clinical trials that require a physical examination.42
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipOne unit uses the Nottingham Over 300 patients have been transferred toprognostic index (NPI)7 to determine open follow up over the past five years.prognosis following surgery for breast This team identified at the start of thecancer and as a further guide to project that numbers of patients enteringpathway selection. their self-managed pathway had decreased in recent years if seen at their ‘exitIn considering the process for deciding the interview’ by the specialist registrar rathermost appropriate pathway there were a than the consultant. Changes introducednumber of subtle differences in approach to te induction training for all new doctorsbetween sites. has helped to reverse this trend (see figure 5 below).In Hillingdon, following completion oftreatment, all patients are offered a self-managed or ‘open access’ pathway. At the‘exit’ interview the doctor discusses and Figure 5: Breast patients on openreassures the patient of the on-going follow up - 2007 to 30 November 2011mammography surveillance, the openaccess to CNS led telephone support and 93the direct access back into the oncology orsurgical clinics if required. 68 57 53 31 OFPC OFPC OFPC OFPC OFPC 2007 2008 2009 2010 20117Haybittle JL, Blamey RW, Elston CW, Johnson J, Doyle PJ, Campbell FC, Nicholson RI, Griffiths K.A.Prognostic index in primary breast cancer. British Journal of Cancer, 1982, Mar; 45(3):361-6. 43
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship In Ipswich the proposed follow up pathway The patient is asked to complete a distress is discussed at the post surgery MDT and a thermometer which guides the referral form for continued mammography consultation (this is subsequently passed to screening is completed. At the next the CNS). Lifestyle advice is also provided appointment with the consultant or CNS and patients with BMI>30 invited to attend the proposal is discussed. Of the 146 the ZEST exercise programme8. Those with patients who opted for this pathway, over low levels of exercise or high levels of 90% were transferred within three months fatigue are given information about the of the end of treatment (surgery and/or ‘Healthwalks’ Programme. Both adjuvant therapy) with the remainder programmes are led by the local authority. transferred after six months. Each patient receives a letter from the In Brighton, breast patients under the care consultant (copied to the GP) explaining of the oncology team are offered a self- their on-going treatment plan particularly managed pathway once they reach the one in respect of the management of hormone year milestone by which time the acute therapies, bone density scanning and effects of therapies have usually diminished mammogram intervals. and the first check mammogram has been performed. At this one year appointment the consultant explains the pathway and ensures the patient has the knowledge and ability to self-assess. “Clinic times overran slightly as a consequence of the changes and the need to explain the new system to ‘unprepared’ patients. This amounted to two minutes extra per patient. This is more than compensated for by the future reduction in outpatient workload and is expected to reduce as patients are told of the system well in advance.” NHS Professional 8 www.zestpeople.co.uk/44
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship “There was scepticism amongst many team members that patients would accept ‘self-care’ imagining that these patients would value regular surveillance. When the rationale was properly explained it became obvious that the opposite was the case and the vast majority of patients we delighted to accept the logic of the scheme.” Consultant OncologistIn Hull patients are seen in the combined team to undertake a needs assessment andfollow up clinic by a clinician following make appropriate referrals depending oncompletion of surgery and/or adjuvant any unresolved needs.therapies. After this initial follow up visitpatients are invited to attend the Data has been collected on all sites on thesurvivorship clinic 12 months after % of patients suitable for a self-manageddiagnosis which enables the nursing pathway is outlined below. Trust % suitable for self- Outpatient slots Data collection management pathway released period based on data available* Hillingdon 65% 149 slots released Over 6 months Bristol 95% 393 One month audit Ipswich 72% 277 (based on 70% pts Over 9 months released from routine follow up at 2 years) Hull 81% 480 slots released Over 8 months Brighton** 77% In excess of 400 Over 3 months (oncology only)* The baseline denominator varied between organisations and therefore may not represent the true position in respect of the % suitable for this pathway** Excludes patients on trials. Of the 265 patients assessed in Brighton over three months, 12% of patients were on clinical trials and not eligible for a self-management pathway. 45
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship Holistic needs assessment (HNAs), care plans and treatment summaries In all units the CNS aims to meet with every patient at or soon after diagnosis where core information is provided including key worker contact numbers. Any immediate needs are identified and early referrals made. In several sites the care plan is commenced at this point (but not necessarily issued to the patient) and this is developed and updated by the specialist team during treatment. The use of any self- assessment tool at diagnosis is at the discretion of the professional and few felt it to be appropriate or useful to use at this point. unresolved needs are seen by the CNS for a needs assessment. Patients are asked to The focus in the sites has been to introduce complete the Distress Thermometer as part holistic needs assessment and written care of the ‘exit appointment’ with the plans following completion of treatment. consultant and immediate needs discussed. This has been achieved in all sites to some degree. The use of simple self-assessment Those recording low levels of distress are tools such as the Distress Thermometer or sent a letter by the CNS after the Concerns Checklist were found to be appointment reminding them of how to helpful in focusing discussion on things contact the CNS should circumstances that mattered to the patients and in raising change. Patients with higher levels of issues that would not normally be been distress are contacted by phone and invited raised during a consultation. to a subsequent meeting with the CNS to address issues that were a source of However, whilst the benefits and concern. Data is continuing to be collected importance of this assessment are on those that contact the help line service recognised, the resources to establish and after this point. sustain HNAs especially during transition to a new model of care, have proved In other sites professionals outside the challenging for several organisations. immediate site specific teams such as specialist radiotherapy radiographers or The Brighton team decided to take a those leading the self-management pragmatic approach and triage patients at support programmes successfully the appointment after the end of undertake the HNA and completion of a treatment so that only those with care plan.46
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipThe timing of the HNA varied from site to In Brighton, the patient treatment and on-site. In Bristol, completing the HNA one going care plan is summarised in a letter toweek after completion of surgery was the patient and copied to the GP. Severalfound to be too soon and they now plan to sites issue the new Breast Cancer Carepostpone this to four to six weeks after the ‘Moving Forward - A Resource Pack forend of treatment or at the lymphoedema Patients’9 and accompanying CD and thisappointment at six months. In Hull patients has been very well received by patients.are seen in combined follow up clinic bythe clinician after treatment is completed At Hillingdon the letter dictated by doctorand called back one year after diagnosis for at end of treatment includes a risk oftheir first mammogram and HNA with the recurrence score.CNS. Education and informationFeedback from test sites suggested that Some sites benefit from having excellentapproximately 45 minutes should be information centres where a vast array ofallowed to complete the assessments information, help and support is providedthough one site has found that the time to patients and carers.required is reducing as confidence in theprocess increases. Care plans commenced In Hull, the team are developing a localat diagnosis and those completed information website for breast cancerelectronically using proforma templates patients and to help with signposting.reduced the time required. The provisionof group learning events for breast cancer patients following the end ofTwo sites noted that the pathway will free treatment have proved popular and ofup consultant time and that a transfer of value to patients.resources from the medical to nursingbudget may help support the continuationof HNA and educational event initiatives.A variety of documentation to supportfollow up has been developed. In Bristol “I thought I was the only onethe teams currently provide comprehensiveend of treatment letters but are planning who felt like me….this groupto use electronic care plan templatesshortly. In Ipswich a combined treatment has increased my confidenceand care plan document is used and in Hull and given me a positivean adapted version of the Macmillan careplan has been developed. direction.” Patient9Breast Cancer Care: Resource pack for patients living with or beyond breast cancer (BCC197) 47
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship Attendance tends to increase with a The programme includes self-management personal invitation from the consultant or strategies and goal setting as well other where it is promoted in place of a normal common issues raised by patients such as clinic visit. All participating sites have either diet, exercise, symptoms, stress and held events or plan to hold them 2-3 times anxiety, sexuality and returning to work. per year and a variety of approaches have been tested. In Brighton, their information ‘event’ comprised a number of talks plus access to In Bristol, two ‘Living Well’ days are held ‘market stalls’ where people could seek per year for breast patients covering topics advice on specific needs such as finance such as understanding the effects of breast and benefits, complementary therapies etc. cancer treatment on bones, diet and Most teams held events on site to minimise nutrition and changes needed to reduce costs and some used project funds to cover risks, the importance of physical activity, any professional sessions and hospitality breast awareness and symptom awareness costs. and menopause issues. For those that identify a need, they can self-refer onto a In Bristol, leading and participating in learning programme based on cognitive information events has increased the behavioural therapy is available and run by confidence and autonomy within the CNS the clinical psychologists and CNS one half team who are sharing and supporting day a week over five weeks. other teams running similar days. An educational programmes for nurses to In at least two organisations the events are support them delivering education to strongly supported by volunteers and groups of patients and undertake ‘expert patients’ who not only ‘meet and motivational interviewing commenced in greet’ but are also able to provide on-going December 2011. peer support if needed. Unplanned admissions The team in Ipswich, led by a clinical nurse The hypothesis for testing suggested that specialist (CNS), runs a continual Moving across the four tumour groups there would On programme comprising four half day be a 10% reduction in unplanned sessions over four weeks. Six monthly one admissions. Unlike the other cancer sites, day information days are held for those patients with breast cancer rarely present who cannot commit to weekly sessions. as emergency admissions10 (4%) unless found incidentally for example in elderly patients with fractured neck of femur or following an acute medical admission. 10 www.ncin.org.uk/publications/data_briefings/routes_to_diagnosis.aspx48
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship Clinicians from test sites advised that most Support services unplanned admissions for those with a Data has been collected by test sites on known diagnosis were due to acute referrals made to clinical and other support problems such as neutropaenic episodes, services for breast cancer patients. Other or complications of surgery. There were than the information events identified fewer unplanned admissions after above the services most commonly referred treatment was completed. Data collected to were: on unplanned admissions within beast cancer was considered inconclusive for • Lymphoedema inclusion in this report • Physiotherapy • Menopause clinics • Psychological support services L3 and 4 • Complementary therapies • Support groups. Several teams have worked with allied “The most surprising and health professional teams, PCTs and local pleasing thing about this authorities to develop options for physical activity. Recently published data seems to project was discovering what confirm that obesity is associated with a higher risk of recurrence and that more facilities already exist in the could and should be done to help patients adjust their lifestyle and increase physical community and that by activity in response to their diagnosis11. Many patients however are confused as to working with providers we when, what and how much exercise they could greatly enhance our can do, are unclear on the benefits of physical activity and lacked the confidenceservice simply by being aware and motivation to get started. of them and using them appropriately.” Healthcare Professional 11 Macmillan Cancer Support - The importance of physical activity for people living with and beyond cancer- A concise review of evidence July 2011 49
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship Initiatives ranged across the sites from a Remote monitoring post treatment exercise programme NICE quality standard12 recommends that developed by physiotherapists to linking ‘Women treated for early breast cancer with local leisure centres who offer have annual mammography for five years subsided rates for cancer patients. Several after treatment. After five years, women teams have provided appropriate training who are 50 or older receive breast for leisure centre staff and advice on the screening according to the NHS Breast limitations that breast patients may have Screening Programme timescales, whereas relating to their treatment and side effects women younger than 50 continue to have and walking, swimming and cycling groups annual mammography until they enter the are now signposted by many teams to suit routine NHS Breast Screening Programme’. patients’ interests and wishes. All teams have established systems to In Ipswich referrals are also made to a ensure mammography screening continues ‘Care Farm’ initiative where people are and that results are provided in a timely encouraged to take up new skills such as way. Several processes remain paper-based growing fruit and vegetables, managing and resource intensive but plans to improve allotments, cooking and crafts. Several say this are being progressed. this has helped them overcome the emotional and physical impact of the The Hull team have installed a parallel disease in a more constructive way. version of the NBSS system to manage their breast mammography recalls. In other sites mammography is scheduled via the normal radiology booking system. “This experience has turned In Ipswich, the Trust has an established my life around.” system for referring patients for NHS Professional mammography screening following completion of treatment. At the post surgery MDT the decision is made to refer and a referral form completed. Patients are booked for their next mammography scan and results sent by post to patients by the radiology department. Any suspected recurrence prompts a recall back to a diagnostic clinic 12 NICE Breast Cancer Quality Standard (Sept 2011) www.nice.org.uk/guidance/qualitystandards/breastcancer/home.jsp50
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipCOLOREC COLORECTAL workstream KEY HEADLINES FROM TESTING: • Data collected during testing* has identified that 46% of patients were suitable for a supported self-managed pathway but that this may well increase as confidence in the system increases and the backlog of patients in the current traditional follow up reduces. • The supported self-managed pathway is suitable at any point in the follow up pathway and for the majority this was around one year post diagnosis. • The holistic needs assessment and use of self-assessment tools does help identify patient needs and was best timed around four to six weeks following completion of treatment. The use of self-assessment tools should be at the discretion of the professional and patient. • 45% of male colorectal patients experience erectile dysfunction problems and direct referral to specialist services should be available without recourse to a GP. • Erectile dysfunction clinic professionals state they are able to help resolve issues for 80% of patients referred to them. • Many patients experience long term bowel and urinary problems. Failure to address these may have many physical, psychological and social consequences. • Good follow up advice and support for colorectal cancer patients is available via Beating Bowel Cancer and Macmillan Cancer Support. Both provide helpline services. • There is evidence that physical activity helps reduce risk of recurrence (see ref 8) • Patients need to know about what they can look out for in terms of signs and symptoms of recurrence even though a ‘test’ is the most likely from of early detection. * The baseline denominator varied between organisations and therefore may not represent the true position in respect of the % suitable for this pathway52
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipCTAL 1. Background and context - colorectal cancer Colorectal cancer is one of the most common cancers in England with over 32,000 new cases diagnosed every year. Survival rates are improving with one year The revised follow up guidance issued by NICE in November 201113 for those after curative resection recommends: • Starting follow up at a clinic visit four to six weeks after potentially curative survival at 74% and five year survival at treatment. 55%. • Offer patients regular surveillance with: • minimum two CTs of the chest, The NHS Bowel Cancer Screening abdomen, and pelvis in the first three Programme was launched in 2006 with the years; aim to improve the earlier detection of • serumcarcinoembryonic antigen tests cancers and reduce bowel cancer deaths by (at least every six months in the first 16 per cent. To date, around 12 million test three years); and kits have been issued and over 11,000 • colonoscopy at one year after initial cancers have been detected. Whilst good treatment. If normal consider again at news for patients this has placed additional five years, and thereafter as determined pressures on specialist teams. by cancer networks. The timing of surveillance for patients with The hypothesis for testing stratified subsequent adenomas should be pathways of care in colorectal cancer determined by the risk status of the suggested that after 18 months of follow adenoma. up 40% of patients would be suitable for a • Reinvestigate if there is any clinical, supported self-managed pathway, a further radiological or biochemical suspicion of 30% would require a traditional follow up recurrent disease. regime of face to face consultations and the remaining 30% were believed to be The concept of self-management and complex patients with multifunctional remote surveillance is not unknown within needs requiring more frequent or specialist the field of colorectal cancer and some management and support. It was also units such as in Mid Essex are known to suggested that there would be a 10% have been using this model of care for reduction in unplanned admissions. Note: many years. Some refer to it as an ‘open Patients with anal cancers were not access’ services with test results sent by included in this testing work. post. Others run telephone or ‘virtual’ clinics. 13 Nice Clinical Guideline 131 Colorectal Cancer – the diagnosis and management of colorectal cancer - p18 www.nice.org/cg131 53
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship New Follow up Hepatic Comments colorectal attendance referral centre referrals p.a over five years Guys and St 200 9 OPA Kings College Specialist centre Thomas’ (GSTT) CNS led for anal cancer North Bristol 340 9 OPA United Hospitals (NBT) CNS led of Bristol Salford Royal 130 12 OPA Manchester (SRH) CNS led Royal Infirmary 2. Teams profiles and baseline position A 12 page postal questionnaire was sent to Three teams were selected to test the colorectal cancer patients from two of the principles of stratified pathways of care test sites who were between six months and support packages for colorectal cancer and two years after completion of patients. The teams from Guys and St treatment. A total of 229 completed Thomas (GSTT) and North Bristol NHS questionnaires were returned representing Trusts (NBT) were appointed in November a response rate of 63%. 2011. Salford Royal Hospital Foundation Trust (SRH) joined the programme in Responses suggest the main problems for August 2011. colorectal cancer patients were: Steering groups involving key stakeholders • Bowel and urinary problems. and patient representatives were • Erectile dysfunction and sex issues. established within each team and the • Information on the signs and symptoms following baseline information collected: of recurrence. • Current patient pathway and follow up Work programmes in each test site focused test regimes. on the following areas: • Number of new colorectal cancer diagnosis per year. • Risk stratification – criteria and process • Number of unplanned colorectal cancer • Holistic needs assessment, written care admissions per year. plans and treatment summaries • Provision of support services. • Education and Information • Support services During the summer of 2011, Ipsos MORI • Remote monitoring solutions for undertook a quantitative baseline patient managing pathology and radiological experience and outcome survey for each investigations. tumour type.54
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship3. Actions and outcomesRisk stratificationThe following criteria were developed tohelp guide health care professionals inselection of the most appropriate pathwayfor patients. The criteria consider thefactors around the disease itself, thetreatment and its side effects and theindividual themselves. Trust Disease Treatment or effects Individual of treatment Supported self Dukes A, B, C Curative intent Good understanding management of care pathway pathway T1 - 3 After closure of (green) temporary stoma Good general fitness N0 -2 After completion of Willingness to self adjuvant therapy manage Clinically Unstable CEA Palliative intent High anxiety scores supervised (>5 on DT score) pathway T4 Post op bowel or (amber) urological dysfunction Poor compliance Trial patients Temporary stoma in Social isolation N1N2 place Significant co- Poor symptom control morbidity Complex care Dukes D Post hepatic surgery Multiagency support pathway (red) M1 Severe side effects of treatment Liver metastases On active treatment High score EMVI patients 55
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship The proposal for a patient to transfer to a and it is envisaged that over 50% of those self-managed pathway rests with the on the current telephone follow up will multidisciplinary team. Clearly transfer to remote monitoring over the circumstances will differ and it will always next year as the system starts to embed. be a joint decision between the patient and Testing has identified that as long as the team as to which pathway is the right remote surveillance systems are robust, the one for the individual. At Guys and St patient informed and they know who to Thomas the decision on the most suitable contact if they have a problem, there is no pathway has been devolved to the CNS. need to wait 18 months before offering a supported self-managed pathway. Those that are selected for the self- managed pathway are generally managed Data has been collected from each test site by the CNS team with roles and on patients attending follow up clinics and responsibilities clearly defined within a the pathway they would be suited to (on standard operating procedure. the basis that remote monitoring was fully available). The results are shown below. In Bristol, follow up and reporting on surveillance tests by telephone has been offered to patients since December 2010 Trust Green - Amber - Complex Supported self- Professionally led pathway - management pathway Specialist led pathway No: % of total No: % of total No: % of total Guys and St 71 69%* 20 19% 12 12% Thomas Salford Royal 76 31% 158 64% 13 5% North Bristol 87 53% 69 42% 7 4% Total 234 46% 247 48% 32 6% * This relates only to patients seen by the CNS in their follow up clinics rather than follow ups as a whole.56
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship Holistic needs assessment (HNAs), care plans and treatment summaries Teams considered a variety of approaches, assessment tools and care plan documentation and consulted on these within their patient focus groups. In all the test sites the CNS meets with the patient at the time of diagnosis to discuss treatment options and assess any specific needs prior to the start of treatment. For some, referral to clinical or support services will be required at this stage. At NBTData was collected from each site on the patients are provided with a writtenpathway choice for each patient and the information sheet that describes the resultprospective slots that could be released. of tests, the diagnosis plus writtenThe period of data collected differed from confirmation of next steps along withsite to site but of the 513 colorectal cancer contact details for the CNS. Depending onfollow up patients recorded across the their needs other pre-printed information isthree sites 46% were identified as suitable also made available at this stage. Self-for self-management. If all these patients assessment tools are not generally used atwere enrolled onto the self-management this point though can be used if it ispathway over 900 prospective outpatient considered helpful in trying to prioritiseappointments would be released over five and address needs.years. This is simply an indication of thepotential – it should be noted that some of Self-assessment tools tend to be used aspatients may have been suitable for self- part of the post treatment assessment andmanagement sooner in their follow up review care plan discussion. Two Trustspathway and others placed on the self- opted to use a ‘Concerns Checklist’ (themanaged pathway will relapse and may GSTT team adapted the design andneed to return to face to face follow up. wording to suit colorectal patients) and the other used the SPARC tool. All have foundSavings resulting from releasing outpatients that using a self-assessment tool hasslots need to be off set against the cost of helped identify needs that ordinarily wouldremotely monitoring the patient, education not have been raised during a consultation.of patients to enable self-management,ensuring rapid access systems back intosecondary care in the event of possiblerecurrence of disease and interventions tosupport late effects of treatment. 57
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship At NBT, the care plan is recorded on the Examples of documentation can be found reverse of the Distress Thermometer and in on the NHS Improvement website addition a copy of the planned test www.improvement.nhs.uk/cancer/ schedule and key dates. At GSST a survivorship/adult_survivorship_pathway combined care plan and treatment or by contacting the teams directly. summary has been developed that records the outcome of the discussion, any further Education and Information referrals made, signs and symptoms to be All three teams have improved the made aware of as well as the planned test education and information for patients schedule over the next few years. with the focus on topics identified as issues for patients following the Ipsos MORI All the CNS teams found difficulty survey. identifying time within current job plans to undertake a health needs assessment at In addition to HNAs, when one to one the time of treatment. At Guys and St advice is provided for patients, all the sites Thomas undertaking a health needs have introduced tumour specific assessment during existing nurse led clinics ‘Information’ or ‘Living well’ days aimed at (that ran in parallel to consultant clinics) confidence building and optimising self- was not successful and a separate clinic has management. Groups ranged in size from since been set up where patients who have 12 at GSST to 32 at NBT and 50 in Salford. recently completed treatment are now The Salford team opted to spread the seen. All sites suggest that about 40 -45 information event over two half days one minutes should be allowed for these week apart. Take up depended on how appointments at about six weeks following people were invited to attend. completion of treatment. Electronic versions of the care plan with prefilled data Since July 2011, patients at NBT are set information help reduce the time advised that the ‘Living Well’ day replaces a required to complete the care plan. normal clinic attendance and this has significantly improved take up. All three teams plan to install either the treatment summary or a combined treatment summary and care plan as electronic templates on their information systems. Guys opted to combine the care plan and treatment summary into a single document as they were being completed at the same time, by the same person and there was much duplication of information.58
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship Figure 7: North Bristol NHS Trust - Colorectal Living Well Days 90 80 70 60 50 40 30 20 10 0 Nov 09 Mar 10 Jul 10 Nov 10 Mar 11 Jul 11 Nov 11 Jan 10 May 10 Sep10 Jan 11 May 11 Sep 11 Attended InvitedIn North Bristol, a further self-managementcourse based on cognitive behavioural “The living well programmetherapy principles is run by clinical improved my ability to movepsychologists and nurse specialists on onehalf day for five weeks and The Penny forward and made aBrohn Centre provides furtheropportunities for support including worthwhile change toresidential weekend events and othercourses focusing on building confidence, my life.”coping strategies, complementary therapies Patientetc.Patients evaluation questionnaires Common topics covered in events were:identified that information day ‘events’ • Food and nutrition.would be best suited to those about four • Physical activity.months after the end of treatment. • Managing after effects, fatigue, bowelFeedback has been overwhelmingly and continence issues.positive and all sites plan to continue with • Self-checks on health, signs andevents three to four times per year. symptoms to look out for. • Emotional issues and managing anxiety. • Benefits and finance advice. • Patient stories. 59
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship All three colorectal teams provide a wide range of Macmillan leaflets, several relating specifically to bowel cancer. Beating Bowel Cancer have recently launched a ‘Living Well’ booklet that will also be made available for patients. The three test site teams have also participated in developing a range of ‘frequently asked questions’ that have now been launched as video clips on the Beating Bowel Cancer website. Unplanned admissions Remote monitoring No data was collected on unplanned The self-management pathway is admissions during the test period. dependent upon a safe reliable system of scheduling and monitoring test results. For Support services colorectal this is for CEA blood tests, CT A wide range of support services have scans and colonoscopy. been identified to support colorectal patients. The following support services are NBT have recently implemented their the ones most often of help to colorectal remote monitoring solution for colorectal cancer patients. cancer patients. The system interfaces with the Trust cancer information system, • Diet and nutritional advice. pathology and radiology systems to provide • Psychological support. the CNS with the patient status and test • Erectile dysfunction and sexual issues. results in one location. Suitable patients are • Physical activity – physiotherapy, local ‘enrolled’ and baseline details including authority schemes or community led. diagnosis, treatment and test due dates are • Benefits and finance advice. entered. The system alerts the CNS when • Support groups. results require review and when due dates have been exceeded. Salford and GSTT team have developed in house solutions within existing IT systems and both are expected to ‘go live’ during Spring/Summer 2012. Further evaluation of these systems will be undertaken in the future.60
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipLUNG LUNG workstream KEY HEADLINES FROM TESTING: • A holistic needs assessment (HNA) and written care plan is of value to patients and should be offered as soon as possible after diagnosis. • Well managed ambulatory care services that are flexible to meet patient needs can reduce unplanned admissions. • Outpatient attendances should be flexible and permit patients to attend the most appropriate clinician to manage symptom-triggered visits, not necessarily the last consultant seen. • A flexible lung service requires a greater degree of administrative support. • All patients required some form of future care but several can self-manage for periods of the pathway and could be supported by telephone assessments during this period. • Frequency of outpatient attendances should be tailored to patient needs and where possible offered as a one stop clinic. • The ‘opt out’ approach to outpatient attendances appears to work well for many patients. In Brighton 25% of appointments for the joint clinic were cancelled and rearranged following pre-clinic telephone calls. This provided the capacity to see other more urgent patients. • Physiotherapy and breathing management; diet and nutrition; finance and benefits were the support services referred to most commonly during testing. • In Brighton, a projected £111,122 per annum in benefits was identified for 16 patients seen by the Citizens Advice Bureau advisor. • Patients and carers need clear information how to manage symptoms and who to contact if they are worried both in and out of hours.62
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship1. Background and context - It was suggested that 15% of patients maylung cancer be suitable for a supported self-managedLung cancer is the commonest cause of pathway, 65% would require a traditionalcancer deaths in the UK causing 22% of all follow up regime of face to facecancer deaths. Patients often present late consultations and the remaining 25% werein the course of their disease with around believed to be complex patients requiring70% having advanced or incurable disease more frequent or specialist managementat presentation. Recent work15 has shown and support.that 38% patients are first diagnosedfollowing an emergency admission. Four recent publications were considered relevant to this testing work.This group of patients are highlysymptomatic with significant health needs Nice Guidance CG121 on Lung Cancer16and frequently utilise out of hours care. (April 2011) made the following recommendations regarding follow upTwo teams were selected to test the management:principles of stratified pathways of careand support packages for lung cancer • All patients should be offered a specialistpatients with the aim of improving the follow up appointment within six weeksquality and efficiency of services provided. of completing treatment to discuss on-going care. They should be offeredThe hypothesis for testing was that by regular appointments thereafter, ratherintroducing risk stratified pathways of care than relying on patients requestingfor lung cancer patients there would be: appointments when they experience symptoms.• An improvement in the experience and • Offer protocol-driven follow up led by a patient reported outcomes of care. lung cancer clinical nurse specialist as an• A reduction in outpatient attendances option for patients with a life expectancy by 15%. of more than three months.• A 10% reduction in unplanned • Ensure that patients know how to admissions. contact the lung cancer clinical nurse specialist.15 National Cancer Intelligence Network – Routes to Diagnosis - www.ncin.org.uk/publications/data_briefings/routes_to_diagnosis.aspx16 The diagnosis and treatment of Lung Cancer – Update of NICE Clinical Guideline 24 (Issued April 2011) 63
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship (The NICE Quality Standards for Lung • Managing cachexia - An article Cancer are due to be published in late published in Lancet Oncology18 in April March 2012). 2011 by Andrew Wilcock et al recognised that weight loss in cancer patients is Two other publications have been relevant rarely recognised, assessed or actively to the work over the past year for those managed and that interventions to not considered suitable for active reduce or delay its effect can be treatment: implemented sooner in the pathway. • Access to palliative care - A study in 2. Team profile and baselines the USA17 by Dr Jennifer Temel et al Two lung teams were selected (see table examined the effect of introducing below) in Hull and Brighton to test the palliative care early after diagnosis found potential of introducing stratified pathways that those referred early had a better of care within lung cancer. Both teams had quality of life than those assigned to participated in earlier testing of assessment standard care. Fewer patients in the and care planning and treatment palliative care group experience summaries. depressive symptoms and median survival was increased. New lung Follow up model No: sites where Surgical diagnosis (mainly) lung cancer referrals p.a services are delivered Brighton 250 Consultant led 2 Referred to Guys and St Thomas’ Hull 500 Consultant led 1 Treated on site 17 Early palliative care for patients with metastatic non small cell Lung cancer. New England Journal Of Medicine Temel et al Med 363:8 Ag 19 2012. 18 Definition and classification of cancer cachexia – an international consensus. Lancet Oncol 2011;12 489-9564
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipHull aims: The team had previously streamlined the• To further develop nurse led clinics for referral service to ensure that all two week patients completing treatment. wait and other lung cancer patients are• To use the Sheffield Profile for seen in a joint clinic with appropriate Assessment and Referral for Care (SPARC) clinicians and specialist nurses. Use of assessment tool to identify needs and HNA’s, care plans and treatment develop care plans. summaries were already embedded in• To test the degree to which risk stratified practice. pathways can be applied in lung cancer.• To test the treatment summary. Patient experience data• To consolidate initial investigation into a It was agreed that lung cancer patients smaller number of consultant respiratory would not be asked to participate in the clinics. same Ipsos MORI experience and outcomes of care survey undertaken within otherThe team had previously established nurse tumour groups and an alternativeled holistic care assessment clinics. Follow approach was agreed.up is mostly consultant led (oncologists,respiratory or cardiothoracic). The clinical A separate parallel project led by the NCSIoncologist within the team encourages project manager was established to:suitable patients to self-manage and self-refer whenever they have a problem. • Identify the extent of multi professional support currently provided for lungBrighton aims: cancer patients.• To establish a cancer clinic with a flexible • To collect self-reported quality of survival appointment system enabling patients to information from patients. be seen urgently when needed. • To identify key components or patterns of• To test a pre-clinic telephone assessment care that enhances the duration and to reduce unnecessary follow ups. quality of care and survival.• To test the use of a risk-stratification • To provide baseline measures on which to model to predict the ability to identify base future service improvement early on in a patient’s care pathway what programmes. form of aftercare will suit their needs.• To test whether a Health and Wellbeing Data collection is still on-going within both Clinic is desirable and useful for lung test sites and the final report from this cancer patients. study of 200 patients is expected June 2012. 65
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship 3. Actions and outcomes Stratifying criteria were: Risk stratification • High Distress Thermometer Score (>6/10 The lung cancer team in Brighton collected at presentation). data retrospectively on patients diagnosed • Inadequate Social Support System (as with non-small cell carcinoma between identified by patient/carer or clinician). 01/03/2010 – 28/02/2011. By scoring for • Advanced Stage of Disease at certain criteria at initial presentation (see presentation (stage IIIB/IV). stratifying criteria), the aim was to see if • More than two co-morbidities or severe the future pathway required by the patient COPD (FEV1 <50% predicted) to best meet their needs could be • PS 3/4 at presentation. predicted in advance. • One or more of the following at presentation: - pleural effusion, spinal Data was collected on the following to metastases, endobronchial occlusion, establish the level of care the patient cerebral metastases, chest wall invasion, required and a score assigned to each SVCO, hypercalcaemia, long bone criterion met (i.e. self-managing/supported fracture, SIADH. care/complex care): • Hypoxia (Oxygen Dependence). • Step 3 on WHO analgesic ladder • Number of telephone calls to CNS • Carers’ impression of patients’ ability to between clinic appointments. cope is poor. • Number of unscheduled admissions to • BMI < 20, >10% Body Loss at hospital. presentation. • Routine follow up appointments < 2 months apart. Work is on-going to assess the value of the • Number of patient-triggered above system at targeting more appointments required. intelligently whom may benefit from • Number of professionally-triggered intensive outpatient follow up to prevent appointments (outside of routine admission to hospital. Early data suggests follow up). that the presence of severe COPD, • Number of times discussed at MDT (after advanced disease (stage IIIB/IV at diagnosis made). presentation) and high distress scores may be reliable indicators of the need for increased support. Need for oxygen, opiate analgesia and poor performance status appear less reliable in early analysis.66
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship The Hull team looked at the pathway for 275 new lung cancer referrals between April and December 2011 and found: • 70% were undergoing active treatment and considered ‘complex.’ • 30% were referred to best supportive care. Of the 70% in active treatment many deteriorated rapidly and the managementThe team also collected data on the plan changed to one of palliative and bestnumber of routine, patient or professionally supportive care.triggered appointments and cancellationsthat were required in the flexible clinic Those that completed treatment were seenthroughout 2010 and 2011. within the nurse led clinic where a HNA was undertaken and a care plan generated.Professionally triggered appointments were The team identified that of the 63 therequested mainly by GPs or community patients seen in this nurse led clinic:Macmillan teams/district nurses. In somecases it was via another source. Patients • 21 (33%) were considered suitable fortriggered a rapid access appointment referral to community palliative caredirectly via the hospital Macmillan CNSs or teams or primary care managementrespiratory secretaries. (green pathway). • 39 (62%) required on-going hospital careCancelled appointments were facilitated by (amber pathway).a pre-clinic telephone call the week before. • 3 (5%) required on-going intensivePatients identified as suitable for a pre- specialist support (red pathway).clinic call were those not currently receivingactive treatment, under routine surveillance Note: No patient was ‘discharged’. Allfor occurrence of new symptoms that may required robust handover to communityrequire palliation or active anti-cancer teams and clear transfer of immediate caretreatment and who wanted to remain to the community team. Most patientsunder secondary care follow up. Where were followed up by district nurses orpatients were not receiving active Macmillan palliative care team.treatment and disease was progressing,advanced care plans were put in place inconjunction with GPs wherever possibleand they were discharged to communitypalliative care teams where appropriate. 67
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship The following pragmatic criteria were developed to support a transfer of immediate care responsibility to the community teams: Essential criteria Desirable criteria • Completion of holistic needs • No sensory impairment assessment by the CNS • Adequate literacy level • Sufficient home support • Geography (distance from site and • Optimum symptom control access to transport) • Access to a telephone • GP/DN/Community Macmillan Team involvement Holistic needs assessment (HNAs), In Brighton, an electronic version of the care plans and treatment summaries treatment summary is generated by the In Brighton, the Distress Thermometer is consultant at each clinic visit and sent to used by the team at follow up attendances the GP and patient within 48 hours of the to identify issues of concern to the patient appointment (see website for example). with all scores recorded and monitored. The Hull team has also introduced the use The first HNA is undertaken with the lung of treatment summaries and these are in CNS at the same time (or very soon after) routine practice across the whole team. diagnosis is confirmed and a care plan is completed. Education and information The Brighton team identified that many In Hull the CNS aims to complete an HNA new patients present with weight loss and using the Distress Thermometer within 4 shortness of breath and many have weeks of diagnosis and 4-6 weeks after concerns about personal finances in completion of treatment. The team initially relation to their diagnosis. It was felt that used the SPARC documentation but in addressing these issues early could have a September 2011 also started to using the positive impact on the patients’ ability to Distress Thermometer. Feedback from cope with side effects of their disease and patients has been extremely positive, treatment and help promote self- particularly on the benefits of referral to confidence. support services such as the breathlessness clinic.68
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipConsideration was given to holding group The introduction of nurse led pre clinicinformation days however the rapidly telephone calls in Brighton has led to thechanging nature of the disease suggested a cancellation and rearrangement of 25%more individual approach would be more scheduled appointment slots as they wereappropriate. not needed by patients at that time. This provided capacity to accommodate urgentA fortnightly health and wellbeing clinic appointments for those that need them.(HWBC) was established in July 2011attended by the physiotherapist, dietician During 2011, 13 patients self-referred toand Citizens Advice Bureau (CAB). Referrals the clinic and a further 44 urgentwere triaged by the CNS as part of the appointments were triggered byinitial holistic needs assessment. professionals. There is no doubt that the availability of these urgent slots helpedKey findings from HWBC: avoid a number of emergency admissions.• Early access to these services was positively received by patients.• A projected £111,122 per annum in 2010 % 2011 % benefits were identified for 16 patients seen by the CAB advisor that would Routine 175 47.9 180 55.0 otherwise have probably been unclaimed. Professional 45 12.3 44 13.5• Rapid access to physiotherapy should be Self 20 5.5 13 4.0 available to all lung cancer patients at Cancelled 92 25.2 72 22.0 any point in their pathway. DNA 33 9.0 18 5.5• Access to psychologist/counsellor is TOTAL 365 327 required for some but is not suitable for health and wellbeing clinic environment.• One stop clinics seeing more than one In Hull, a similar flexible approach to professional can be very exhausting for appointments exists with patients added to lung cancer patients. or removed from planned clinics by the• Closer links with allied health CNS or secretaries as needs change. professionals and the CAB has enhanced the whole team approach to supporting lung cancer patients and their families. 69
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship Unplanned admissions Both the Hull and Brighton, teams have recorded reductions in unplanned admissions. In Hull, there were 34 fewer unplanned admissions with diagnosis of lung cancer over eight months in 2011 versus 2010 representing a 6% reduction overall. Figure 9: Hull - Unplanned admissions with diagnosis of lung cancer 100 80 60 40 20 0 May Jun Jul Aug Sep Oct Nov Dec 2010 201170
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship Figure 10: Brighton - Unplanned admissions with a known diagnosis of lung cancer 12 10 8 6 4 2 0 Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec 2010 2011In Brighton, at the Royal Sussex County It is also worth noting that at RSCH theHospitals (RSCH) during 2011, there was average length of stay has reduced from 11an 8% reduction in the number of to 9 days between 2009 and 2011 and theunplanned admissions for those with a occupied bed days has fallen by 40% fromknown diagnosis of lung cancer compared 1065 in 2009 to 634 in 2011. Comparativeto 2010. Since the introduction of the data collected at Princess Royal Hospital forhealth and wellbeing clinic in July 2011 lung cancer admissions where few serviceunplanned admissions show an 18% changes have been introduced show anreduction on the same period in the increase in the number admitted with aprevious year suggesting that early known diagnosis of lung cancer and anintervention around physiotherapy and increase in length of stay (8 to 12 days)breathlessness, diet and nutrition may also and consequent bed days.have had an impact on unplannedadmissions. 71
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship Clinical and other support services Data has been collected on the range of support services required to support lung cancer patients. The support services recorded for each site were: Referral services Hull (based on 93 patients Brighton (based seen in general clinic or on 81 patients) nurse led) Dietician 5 31 Benefits and finance 24 22 Physiotherapy/breathlessness 13 19 Community Macmillan team 33 16 District nurse 25 5 Social care 9 3 Legal welfare rights 8 - Disabled badge 21 - GP/practice nurse 3 5 Vocational rehabilitation - 1 Psychologist - 1 Complementary therapies - 1 Occupational therapy - 1 Whilst the proportions differ there is Referrals to psychologists appear low from commonality across both teams for the both teams. This is not necessarily because main types of support services required for patients have no psychological needs but lung cancer patients. It is not fully that support is either met through the understood why the level of referrals professionals within the lung team or differed so much between the two sites patients self-refer to the service. In the however issues such as local service reception area of the Hull Oncology Centre configuration, access waiting times or a well resourced unit is staffed by simply how referral data was collected psychologists and volunteers and provides could be factors. open access to patients and visitors.72
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipPROSTATE PROSTATE workstream KEY HEADLINES FROM TESTING: • Remote monitoring is a critical component to enable self-management. • Testing has identified that from the data collected between 27% and 44% of patients were suitable for self-management, though this may increase as confidence in remote monitoring is established. • Needs assessment informs the conversation to focus on what matters to the patient. Due to level of prostate cancer CNS availability within clinical teams, not all patients have equity of access to this important support resource. • Specific needs around erectile function, continence and sex issues continue to be areas of concern for patients and where not addressed can have physical, psychological and social consequences for the patient and their families. • Information and education programmes help inform patients and can be supplemented through national support documents from Macmillan and Prostate Cancer UK. • On-going evaluation of services is required to collect the evidence that the interventions and support provided is making a real difference to patient experience and outcomes of care.74
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipE 1. Background and context - prostate cancer Prostate cancer is the most common cancer in men in the UK with around 38,000 new cases diagnosed every year. The incidence is rapidly increasing partly due to the aging The hypothesis for testing suggested that by introducing risk stratified pathways of care for prostate cancer patients there would be: • An improvement in the experience and population and the use of PSA testing. patient reported outcomes of care. • A reduction on outpatient attendances The treatment decision can be complex for by 40%. both the clinician and the patient and can • Contribute to a 10% reduction in take time to decide and factors such as the unplanned admissions. stage, spread, patient age, comorbidities and personal wishes all having an impact NICE guidance on prostate cancer19 on the decision that is made. highlighted the following in regard to follow up: A consensus meeting of professionals and patients was held in summer 2010 to • Healthcare professionals should discuss discuss different levels of care for prostate the purpose, duration, frequency and cancer patients using a three level model location of follow up with each man with and this has been tested during this phase localised prostate cancer, and if he of the programme. wishes, his partner or carers. • Men with prostate cancer should be It was suggested at the consensus meeting clearly advised about potential longer that 40% of patients had the potential to term adverse effects and when and how go onto a self-managed pathway, 25% to report them. would require planned coordinated care • Men with prostate cancer who have and 35% would require complex case chosen a watchful waiting regimen with management. The following enablers were no curative intent should normally be considered key to the self-management followed up in primary care in pathway. accordance with protocols agreed by the local urological cancer MDT and the • Robustly structured monitoring system to relevant primary care organisation(s). enable self-care. Their PSA should be measured at least • Information, education and advice to once a year. support self-management. • Resolution of acute symptoms associated with the disease or treatment. 15 National Cancer Intelligence Network – Routes to Diagnosis - www.ncin.org.uk/publications/data_briefings/routes_to_diagnosis.aspx 16 The diagnosis and treatment of Lung Cancer – Update of NICE Clinical Guideline 24 (Issued April 2011) 75
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship • PSA levels for all men with prostate Baseline information was obtained from cancer who are having radical treatment the sites and included current pathway, should be checked at the earliest six number of new prostate cancer a year, weeks following treatment, at least every number of unplanned admissions for those six months for the first two years and with prostate cancer in a year and provision then at least once a year thereafter. of support services. It is interesting to note • Routine digital rectal examination (DRE) is that from our four sites, only one site not recommended in men with prostate carried out the radical surgery with the cancer while the PSA remains at baseline other three sites sending their patients to levels. regional centres. This was seen to add a • After at least two years, men with a layer of complexity where specialist treating stable PSA and who have had no centres held onto patients for follow up significant treatment complications, rather than referring back to their local should be offered follow up outside DGH. This increases the potential to ‘lose’ hospital by telephone or secure electronic patients and work is needed to ensure that communications, unless they are taking patients following their specialist treatment part in a clinical trial that requires more are referred back to their local hospital for formal clinic-based follow up. follow up management. • Direct access to the urological cancer MDT should be offered and explained. As with the other tumour types, Ipsos MORI was commissioned to undertake a 2. Team profiles and baseline position postal survey to ascertain the experience Four clinical teams from Ipswich Hospital and reported outcomes for patients NHS Trust, Hillingdon Hospital NHS following initial treatment for prostate Foundation Trust, Luton and Dunstable cancer. Completed questionnaires were Hospitals NHS Foundation Trust and North returned by 483 respondents giving a Bristol NHS Trust were invited to test the response rate of 64%. A report of findings principles of stratified pathways of care is available. and support packages for patients following initial treatment for prostate The main issues raised by prostate cancer cancer. patients were: • Lack of information regarding signs and symptoms of recurrence • Sexual and erectile dysfunction issues76
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship Trust New prostate Follow up Comments cancer p.a. attendances over 5 years Ipswich 250 10 Consultant led service. PSA monitoring usually for life with follow up either in a hospital or primary care setting. Cambridge and Norwich provide specialist surgical service. Hillingdon 285 10 Consultant led service. PSA monitoring usually for life with follow up either in a hospital or primary care setting. Surgery provided at NW London and oncology services at Mount Vernon. Luton and 180 8 Consultant led service. PSA Dunstable monitoring usually for life with follow up either in a hospital or primary care setting. Specialist surgery performed at Lister Hospital. North Bristol 400 10 Consultant led service. PSA monitoring usually for life with follow up either in a hospital or primary care setting. Oncology services at Bristol Oncology ServiceProject team work plans • Needs assessment with written care planIn general the work of the project teams and treatment and management planfocussed on five key areas: summary • Information, education and advice• Risk stratification- criteria and process • Signposting to non-clinical support• Remote monitoring solution to support services. self-management 77
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship 1. Actions and outcomes Risk stratification The risk stratification criteria were developed and tested as outlined in the following table.78
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipInitially the teams tested three pathways In Luton, the stratification decision is first(complex, shared or self-managed) considered one year after initial treatmenthowever after testing the ‘shared care’ for those patients who have stable disease.pathway was removed as it was found The consultants identified that 29% ofconfusing and the feeling was patients patients were suitable for self-managementcould either self-manage with support or at this point.they needed a pathway which wasprofessionally led. The criteria for complex In Ipswich, a snapshot of follow upand shared pathways were therefore attendances was undertaken duringmerged (now blue columns) for specialist November 2011 which highlighted thatled follow up with the remaining criteria 26% of patients could be stratified to self-applicable to those suitable for supported management pathway and this was mainlyself-management. at the two year point after diagnosis. It was noted that several ‘well’ patient remainedThe testing work, based on the limited in specialist led follow up as they were ondata available, found that the percentage clinical trials.that could be stratified to self-managementpathway averaged about 30%. Difficulties In North Bristol, where the remotewere encountered in collecting continuous monitoring system is furthest ahead, thedata (with the exception of North Bristol) numbers stratified to self-management wasso several sites opted to conduct a 44%, with an additional 36% followed upsnapshot audit during November 2011 to as telephone follow ups by the CNS. Thisascertain the proportions. Some patients left 20% on a complex care pathway.were found to be suitable for self-management six months from start of In Hillingdon 33% of patients in theinitial treatment however for the majority a November 2011 snapshot were stratified toself-managed pathway was selected at a self-management pathway.around two years. The potential saving in outpatient slots in these test sites would be over 2,500 slots over three years equating to gross savings of £250, 000 at the current PbR tariff for urology. The savings do of course need to be netted off against the costs of managing patients remotely. 79
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship Holistic needs assessment (HNSa), care In Ipswich, there were issues with time to plans and treatment summaries test care planning and treatment records. In all but one of the test sites, there was Both the surgical CNS and the radiotherapy only one prostate cancer specialist nurse specialist planned to undertake holistic (CNS) and when you look at the number of needs assessments however this was only clinics the CNS needs to cover within an possible with the specialist radiographer organisation you can see why some who completed 11 care plans over the life patients do not have the benefit of CNS of the project. The care plan and treatment input at key points in their cancer journey. summary were combined as a single document. Lack of time and increasing In Luton, CNS resource constraints meant workload prevented the surgical CNS from they could only undertake a structured completing assessments personally. HNA for those stratified to a self- However, several patients were referred to management pathway. Whilst of benefit to the CNS within the Cancer Information some, others would have preferred to have Centre who was able to complete a further had the discussion sooner to allow timelier nine assessments on her behalf. For the referral to support services. It was noted nurse led assessments the care plan and that the CNS is always available for treatment summary were kept as separate patients during joint clinic session or by documents due to the complex needs of phone should patients have issues or the patients and because the urology CNS specific needs they wish to discuss. The felt the treatment summary should be tool used to guide the assessment completed by the consultant. conversation was the PEPSI-COLA aid memoir. The CNS currently has one session In Hillingdon, the prostate CNS used the a week to undertake assessments and Distress Thermometer as the preferred there are five slots on each clinic. Work assessment tool, however feedback continues within the Trust to review the received from patients led to a change in suitability of assessment tools and to the title ol to a ‘Concerns checklist’. Use of streamline the care plan and treatment this tool did identify the need for improved summary format. The recent appointment support around continence and erectile of a second CNS should help progress this. function problems.80
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipNorth Bristol continues to develop anelectronic Client Relations ManagementSystem (CRM). In the interim the DistressThermometer was adapted to become the‘Client Concerns Checklist’. Through usingthe tool concerns have been raised thatwould not have emerged from thetraditional consultation. Care plans andtreatment summaries are in the form of acomprehensive letter until the CRMbecomes live.CNS representatives in all the test sitestook up the offer of training in “For those who attend themotivational interviewing to support the ‘Living Well Cognitivechange in nature of the conversation andmove patients from passive recipients to Behavioural Therapy’ course,active managers of their own health. an individual care plan is negotiated towards the end of the course. Initially, the assessment and patient conversation took about 45 minutes, though with experience the time required has reduced.” Healthcare Professional 81
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship Information and education Several of the sites had either information “We are leaving the seminar days or health and wellbeing clinics which feeling very confident that we are part facilitated by volunteers. The days have been well evaluated for their content will not drop off the radar in and guiding individuals on the road to self- management, in the knowledge that if the future.” they run into problems they know where to Patient go for support. In Luton, patients are provided with The The events are not tumour specific and Prostate Cancer UK booklet ‘Living with include all types of cancer patients. The and after prostate cancer’ and Macmillan information days have proved popular for ‘Move More’ exercise pack. Motivational those reluctant to undertake the ‘Moving interviewing training was provided to On’ course. However some of those clinical professionals and the ‘Active Luton’ attending the information day went on to staff. ‘Active Luton’ offers easy access to attend the ‘Moving On’ course. exercise assessment and goal planning. The reason given was limited interest in holding North Bristol offers ‘Living Well’ day that tumour specific information days though runs three times per year to capture this is being explored as a network wide prostate cancer patients following their option. initial treatment. Hillingdon held a very successful health and wellbeing information day where patients could access information on the self- management, with ‘market stalls’ to access advice information and support from “This has given me more Macmillan, The Prostate Cancer Charity confidence to deal with the and local organisations. The first event was attended by 65% of those invited. day to day challenges that Ipswich provides both information days and an educational ‘Moving On’ course. arise.” Patient82
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipSupport services There is no data source that capturesDue to difficulties in obtaining information routinely this aspect of care and althoughon referrals on signposting throughout the we were able to do this snapshot, we wereproject, a decision was taken to do a one unable to determine the actual take upmonth snapshot (November 2011) that rate of referrals.would hopefully be representative of othermonths.In Ipswich, for example, 59 patients werereferred or signposted to the servicesshown in the chart below (figure 12). Figure 12: Referrals to clinical and support services - Prostate Cancer Patients - November 2011 9 8 7 6 5 4 3 2 1 0 Moving On Programme Psychosexual Advisor Erectile Dysfunction Community Palliative Care Benefits and Finance Physical Activity Counsellor Community Therapies Continence Advisor Occupational Therapy Trust Palliative Care Dietician District Nurse Social Care 83
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship Remote monitoring “This system was locally The concept of remote monitoring for prostate cancer is not new. For example, in developed, but over time as the Royal United Hospital Bath, a remote monitoring system has been in place since the numbers of patients has being a pilot site with the Modernisation Agency’s Action on Urology programme. increased the system is PSA testing is the key diagnostic test used struggling to cope.” to indicate recurrence of prostate cancer. In Healthcare Professional the main it is performed annually but can be done more frequently depending on the individual circumstances and can continue The system NHS Improvement developed for life. For prostate cancer patients with North Bristol is now being tested in effective PSA tracking is critical to reducing other sites. Implementation of the system follow up and promoting self-managed has been delayed due to trying to get it care through remote monitoring. With the onto the IT departments agenda, and some increasing use of intermittent as opposed sites having to complete business cases to continuous hormone therapy a remote before it would be considered. monitoring system would appear to offer a management solution though specialist It is recognised that any savings resulting oversight without the need to resort to from releasing outpatients slots will need further outpatient clinic attendances for to be off set against the cost of remotely this group of patients. monitoring the patient, and will probably require following further testing and evidence of utility requiring a remote monitoring tariff to embed it in practice and ensure it continues to develop with time.84
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship Next steps: From innovation to adoption With the proof of principle established that risk stratified pathways are achievable in practice, there is now a need to ensure that the findings from the pilot testing are replicable to other clinical teams and across self-selecting delivery organisations prior to National roll out. The tumour types included in this prototyping phase are breast, colorectal and prostate, with a focus on those patients in remission following treatment who are suitable for a self- managed pathway. This prototype phase will include 27 clinical teams within nine organisations delivering cancer services to their population. We have retained two of our pilot sites to test the sustainability of the pathways and the experience of patients over a greater timeframe. This experience of care will be evaluated early 2013 and compared to the baseline for our pilot and prototype sites.86
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorshipThe nine organisations that were We will be working in partnership withsuccessful in their bid to receive national NatCanSAT to analyse the HES data andsupport in prototype testing the pathways our test sites to cost bundles of careare: around the recovery and sustaining recovery elements of the pathway for• Dorset County NHS those who have been treated with Foundation Trust curative intent, in remission and suitable• Ipswich Hospitals NHS Trust (pilot for a self-managed pathway of care. The site for breast and prostate) recovery element will be part of, or• North Bristol NHS Trust (pilot site for derived from, the acute tariff and the breast, colorectal and prostate) sustaining recovery tariff from the follow• North West London Hospitals up activity tariff. NHS Trust• Royal United Hospital Bath If at the end of this current year the NHS Trust transferability of the pathways looks• St Georges Healthcare NHS Trust promising, we will begin a national roll• Imperial College Healthcare out through cancer networks as a rolling NHS Trust programme over the next two years with• The Royal Marsden NHS the three current cancer types (breast, Foundation Trust colorectal and prostate). Initially this will• West Hertfordshire Hospitals be through the networks that currently NHS Trust have the resources to support the roll out, and are keen to work with us to take thisEach of the sites will be testing risk work forward. At the same time we willstratified pathways with clinical teams be looking to widen the breadth ofsupporting breast, colorectal and prostate tumours to include all urology cancerspatients who are in remission following and some gynaecological cancers. We willtreatment for cancer. use the proof of principle established in the pilot phase and prototype within theWe will continue to work with the major new tumour areas. The focus will remainproviders of cancer and other clinical on those treated with curative intent andinformation systems to embed the remote in remission as this group may be themonitoring functionality within their most suitable for a self-managed pathwaysystems. that includes remote monitoring of tests and PROM measures.Alongside this work we will be costingcare with the traditional model of followup in breast, colorectal and prostatecancer. 87
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship Conclusion This testing has shown that the Adult Cancer Survivorship work continues to make steady progress and that a significant step forward has been made in developing and implementing new models of aftercare services that both improve quality and experience for patients as well as improve the efficiency and productivity of services. New levers are starting to emerge to support wider adoption of survivorship work such as QIPP, CQUIN payments, specifications within the cancer commissioning toolkit, peer review and this will help support the drive for change and further adoption of good practice. This is not easy work and requires vision, leadership, commitment and determination in order to inspire and deliver such radical change in the current climate. We are indebted to the work of all the test sites teams, and those who have supported them, and for the learning they have shared.88
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship 89
    • Visit our website at: www.improvement.nhs.uk/cancer/survivorship90
    • NHSCANCER NHS ImprovementDIAGNOSTICSHEARTLUNGSTROKENHS Improvement Scan the QR codeNHS Improvement’s strength and expertise lies in practical service improvement. It has over a for quick anddecade of experience in clinical patient pathway redesign in cancer, diagnostics, heart, lung and easy access tostroke and demonstrates some of the most leading edge improvement work in England which the interactivesupports improved patient experience and outcomes. adult survivorship pathwayWorking closely with the Department of Health, trusts, clinical networks, other health sectorpartners, professional bodies and charities, over the past year it has tested, implemented, sustainedand spread quantifiable improvements with over 250 sites across the country as well as providingan improvement tool to over 2,000 GP practices.NHS Improvement3rd Floor | St John’s House | East Street | Leicester | LE1 6NBTelephone: 0116 222 5184 | Fax: 0116 222 5101www.improvement.nhs.ukFollow us on: Publication Ref: NHSIMP/cancer004 - September 2012 ©NHS Improvement 2012 | All Rights ReservedDelivering tomorrow’simprovement agendafor the NHS