Adult survivorship: from concept to innovation

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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

  1. 1. NHSCANCER NHS Improvement CancerDIAGNOSTICSHEARTLUNGSTROKE Adult Survivorship FROM CONCEPT TO INNOVATION National Cancer Survivorship Initiative (NCSI): NHS NHS Improvement
  2. 2. 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
  3. 3. 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
  4. 4. 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
  5. 5. 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
  6. 6. 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
  7. 7. 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
  8. 8. 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
  9. 9. 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
  10. 10. 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
  11. 11. 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
  12. 12. 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
  13. 13. Visit our website at: www.improvement.nhs.uk/cancer/survivorshipA generic pathway for those living withand beyond cancer has been developedand is shown below and forms the basisfor our tumour specific pathways: Figure 4: Stratified Pathway of Care - Generic RECURRENCE/SYMPTOMS/ABNORMAL TESTS TIMELY RE-ACCESS SUPPORTED SELF MANAGEMENT REMOTE MONITORING CONSULTANT LED MDT PROFESSIONAL LED FOLLOW UP NURSE SPECIALIST LED TELEPHONE LED TREATMENT CLINICAl DIAGNOSIS TREATMENT (CURATIVE/PALLIATIVE) REVIEW SUPPORTIVE AND PALLIATIVE CARE PRIMARY CARE LED DECISION First line and/or subsequent PSYCHOLOGICAL TRANSITION TO END OF LIFE CARE MDT CONTINENCE/STOMA PHYSIOTHERAPY/OCCUPATIONAL THERAPY CLINICAL NEEDS REVIEW DIET & NUTRITION SUPPORT ASSESSMENT CARE PLAN SERVICES SEXUAL ISSUES NEEDS WRITTEN + ASSESSMENT CARE PLAN LYMPHOEDEMA TREATMENT SUMMARY SELF MANAGEMENT PROGRAMMES EDUCATION & CLINICAL INFORMATION INFORMATION/EDUCATION DAYS SUPPORT SERVICES INFORMATION PRESCRIPTIONS LOCAL AUTHORITY, COMMUNITY OR PHYSICAL PRIVATELY LED EXERCISE SCHEMES EDUCATION & ACTIVITY INFORMATION TRUST LED EXERCISE PROGRAMMES OTHER REABLEMENT/SOCIAL CARE OTHER SUPPORT SUPPORT SERVICES SERVICES FINANCE AND BENEFITS VOCATIONAL REHABILITATION COMPLEMENTARY THERAPIES VOLUNTARY SECTOR/SUPPORT GROUPS 13
  14. 14. 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
  15. 15. 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
  16. 16. 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
  17. 17. 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
  18. 18. 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
  19. 19. 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
  20. 20. 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
  21. 21. 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
  22. 22. 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
  23. 23. 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
  24. 24. 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
  25. 25. 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
  26. 26. 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
  27. 27. 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
  28. 28. 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
  29. 29. 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

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