Adult survivorship: from concept to innovation

HEART

LUNG

DIAGNOSTICS

STROKE

CANCER

Adult Survivorship

FROM CONCEPTTO INNOVATION

Cancer

NHSNHS Improvement

NHSNHS Improvement

National Cancer Survivorship Initiative (NCSI):

Content

Foreword

Executive summary

Introduction

Remote monitoring

Care coordination

Evaluation• Findings from patient survey on follow up costs• Patient experience and reported outcomes of care baseline• Care coordination perception and preference

Breast workstream

Colorectal workstream

Lung workstream

Prostate workstream

Next steps

Conclusion

3

4

7

15

23

27

38

52

62

74

86

88

Foreword

As 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

Visit our website at: www.improvement.nhs.uk/cancer/survivorship

3

Executive summary

As a partner in the National Cancer Survivorship Initiative (NCSI), NHSImprovement has led on redesigning pathways with NHS clinical teams toimprove service delivery and support offered to improve the experience andreported outcomes of care for cancer patients following initial treatment. Themandate for this work was outlined as a key priority in the Cancer ReformStrategy (2007) and Improving Outcomes; a Strategy for Cancer (2011).


4

Historically, patients completing treatmentfor cancer, have followed very traditional,‘one size fits all’ follow up pathways overfor two to five years or more. Theincreasing prevalence of cancer, throughimproved screening and awareness andthe increasing number of survivors isincreasing pressure upon alreadystretched services that we know cannotbe sustained in the longer term. We alsoknow through previous research andmore recent patient surveys that patientsreport feeling abandoned at the end oftreatment and can live with one or moreunmet needs following completion oftreatment. Something new and radicalneeds to be done to improve theexperience and outcomes for patients andto address the increasing demand onhealthcare resources.


5

In 2011, eight organisations working onfour cancer pathways across 14 tumourteams were selected to test whole newpathways of care with the focus onintroducing risk stratified pathways andsupport packages that optimise self-management whilst improving the qualityand effectiveness of the services provided.

The belief was that the pathways wouldprovide a more flexible approach to followup that was tailored to individual needs.The emphasis would be on recovery andreablement, with individuals’ returning toa ‘normal’ life as soon as possible andmaintaining their recovery throughsupported self management with timelyaccess should problems occur.

This report brings together the learningand outcomes from this work that was anatural progression from the previousphases of testing:

• 2008 - Scoping the potential• 2009 - Piloting elements of aftercare services

• 2010 - Development and testing in six tumour areas: • needs assessments and care plans• treatment summaries

• 2011 - Developing and testing stratified pathways - four tumour areas.

The hypothesis for this recent phase oftesting was that by introducing riskstratified care that meet patient needsand that enable patients to self-managewhere appropriate, we would be able to:

• Improve the patient experience and reported outcomes of care

• Reduce follow up attendances by an average of 50%

• Contribute to a reduction in unplanned admissions.

For breast, colorectal and prostate cancersthe emphasis has been on supportingpatients to self-manage with remotemonitoring replacing routine follow upwhere appropriate. For the two lung sitesthe emphasis has been on enhancing theservices provided with a more proactiveapproach to the management tosymptoms and needs.

Both qualitative and quantitative data hasbeen collected throughout this phase oftesting and we are especially grateful tothe test sites teams and colleagues withinIpsos MORI for all their contributions tothis work.


6

The outcomes over the past year suggestthat the principle of stratifying patientsfollowing completion of treatment isappropriate, acceptable and safe as longas monitoring and support systems are inplace. From the data collected over sixmonths we know we are well on the wayto delivering the 50% reduction inoutpatient activity across breast, prostateand colorectal cancer follow ups enabledthrough the provision (actual or planned)of remote monitoring systems to managepatients at a distance.

This release of capacity enables not onlyimprovements in the quality andexperience of care for those with morecomplex needs who need more time withthe specialist team during their outpatientvisits but also opportunities for newactivity and improvements to accesswaiting times.

The contribution to reducing unplannedadmissions in lung cancer sites has beenaround 6-8%; though there has been nocontribution from the other tumour typesthat can be attributed to the pathwaychange. It is too early to evaluate theimpact on patient experience andreported outcomes of care through afollow up survey to compare the newmodel of care against the baseline whichis planned for early in 2013.

Within this document you will findsections on each tumour work stream, a section generic to all tumour sites onremote monitoring, care coordination,evaluations associated with the testingwork and the plans for the next phase oftesting as we move to prototyping andspread across the NHS in England.

Although difficult and challenging attimes, all the teams have contributedpositively and effectively to this phase oftesting. The work has been supported bywork streams within the National CancerSurvivorship Initiative, Macmillan CancerSupport, the Department of Health cancerteam, and specialty specific charities suchas Breast Cancer Care, Beating BowelCancer and The Prostate Cancer Charity.We are extremely grateful for everyone’scontribution to this programme of workand for the learning shared over the pastyear.


7

Introduction

The 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:

Testing elements of survivorship care and support (2009/10)

Testing assessment and care planning and treatment summaries (2010/11)

East Kent Hospitals University NHS Foundation Trust

Guys and St Thomas’ Hospital NHS Foundation Trust

University College London Hospitals NHS Foundation Trust

South of Tyne and Wear NHS Trust

Velindre Hospital NHS Trust (2 projects)

3 Counties Cancer Network (Gloucestershire,Herefordshire & Worcestershire)

Mount Vernon Cancer Network

Luton PCT

North Trent Cancer Network

The Christie NHS Foundation Trust

The Royal Free London NHS Foundation Trust

Pan Birmingham Cancer Network

North Bristol NHS Trust

The Royal Bournemouth and Christchrch Hospitals NHS Foundation Trust

Ipswich Hospital NHS Trust

Brighton and Sussex University Hospitals NHS Trust

Poole Hospital NHS Foundation Trust

The Royal Marsden NHS Foundation Trust

The Hillingdon Hospital NHS Trust

Sandwell and West Birmingham NHS Trust

Great Westerns Hospital NHS Foundation Trust

Central South Coast Cancer Network

Hull and East Yorkshire Hospitals NHS Trust

Hammersmith Hospital (Imperial College) NHS Trust

Musgrove Park Hospital NHS Trust

Figure 1


8


9

In 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.

Hull and East Yorkshire Hospitals NHS Trust

1

Ipswich Hospital NHS Trust3

Salford Royal NHS Foundation Trust

2

Luton and Dunstable Hospital NHS Foundation Trust

4

North Bristol Hospital NHS Trust

5

Guy’s & St Thomas’ NHSFoundation Trust

6

Hillingdon Hospital NHS Trust7

Brighton and Sussex UniversityHospitals NHS Trust

8

1

3

2

4

5

8

6 7

NHS ImprovementTesting

4 TumourWorkstreams

8 TestCommunities

14 TumourProjects

2 EnablingProjects

Figure 2

Adult Pilot Sites -2011/12


10

The model of care, on which the stratifiedpathways of care are based, has beenadapted from the long term conditionsmodel and is shown in the figure 3 below:

Regardless of whether individuals havebeen treated with curative or palliativeintent, the same model should apply withstratification into an appropriate level ofcare.

This should take account of the disease,the treatment and its effects, and theindividual’s personal circumstances.Patients will move between the differentlevels of care as needs and degree ofdependency change.

Figure 3


11

The testing hypothesis was that throughrisk stratifying into appropriate level(s) ofcare there would be:

• An improvement in the experience and patient reported outcomes of care from baseline

• A 50% reduction in outpatient attendances from the traditional model

• A 10% reduction in unplanned admissions from baseline.

From the testing how did we do with ourtesting hypothesis?

A proof of principle has been establishedthat risk stratification is achievable andthat remote monitoring is an appropriateway of managing patients treated withcurative intent with their cancer inremission as an alternative to face-to-faceconsultation.

Most sites have stratified significantnumbers of patients on to self-managedpathways and data has been collected onthese and reported within each workstream chapter. Where monthly datacollection proved impossible to collect anumber of sites opted to undertake a onemonth audit capturing as many patientsas they could and stratifying, evenhypothetically, to the most appropriatepathway. Data collection has thereforebeen challenging and has been morerobust in some sites than others, thereforethe exact numbers of slots releasedshould be seen as an indication ratherthan an absolute.

Factors affecting ease of data collectionand reliability were:

• The absence of coding within outpatients activity - patients with a cancer diagnosis had to be identified by clinic staff and manually recorded, or assumptions needed to be made.

• Cancer patients are often seen in general clinics (e.g. Urology) spread across multiple locations within Trusts rather than cancer specific clinics.

• Little or no tracking, paper based or electronic, of patients followed up in multiple Trusts, e.g. tertiary specialist centres, DGH, primary care.

• The term ‘follow up’, in data definition, includes all appointments following a new patient appointment. Patients may have several ‘follow up’ appointments before diagnosis and treatment takes place. For this programme of work, we needed to collect data on follow up patients where initial treatment has been completed.

• A few sites achieved limited roll out of new pathway within their team. For example in one site it was just the oncology team not the surgical follow ups that were counted.

• Variation in point of stratifying to self-managed pathway. Some patients were stratified at the point they became suitable for a self-managed pathway others were several years into follow up but could have been released earlier hadthe system been available.

For three of the tumour types, i.e. thosewhere the majority have been treatedwith curative intent, there is optimismthat the 50% reduction in outpatientattendances will be realised and exceededthough will be dependent on growingconfidence in a robust remote monitoringsolution and the reduction in backlog ofpatients in the current traditional followup system over the next few years. Forlung cancer patients there was not amarked reduction in outpatientattendances though improvements inprocesses and access offered patientsmore choice over when theirappointments were scheduled.

With regard to reducing unplannedadmissions, this was not proven inprostate, breast nor colorectal cancer.However there was a reduction ofbetween 6-8% in the number ofemergency admissions for lung cancerpatients, and in one site also a reductionin length of stay following an unplannedadmission.

We do not yet know the outcome ofwhether there has been an improvementin the experience or reported outcomes ofcare but we are aware though the testsites of encouraging comments ofpatients and professionals during thetesting process.

Given the lengthening time that peopleare now living following a cancerdiagnosis it is a given that evidence willaccrue over time. This current phase of

testing will require data collection tocontinue in the longer term to ensure thefull impact of risk stratified pathways iscaptured.

There is an assumption that all patientswill be offered an assessment and careplan at key points in their pathway andthat they receive a treatment summarythat is updated and communicated aftereach phase of treatment is completed.With the patient’s consent these shouldboth be shared with those providing orsupporting care delivery. However thereality in practice is that there has beenlimited implementation of assessment andcare planning. This difficulty has been dueto what appears to be a new servicebeing implemented within currentresource constraints.

There is therefore a need to reviewexisting job plans which will includeshifting resources around the systemwithin the available financial envelope.Evidence will be required to show thebenefit to patients through positiveexperience and improved reportedoutcomes of care against the baseline.Assessing and planning for survivorshipcare should begin at diagnosis andreviewed subsequently at key points inthe pathway which will include the end oftreatment, when stratified to appropriateaftercare pathway or when an eventoccurs that changes the managementplan. Commissioning a bundle of care inthe future where components arespecified within a contract may resolvecome of the resource constraint issues.


12

A 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

TELEPHONE LED

PRIMARY CARE LED

CONTINENCE/STOMA

PSYCHOLOGICAL

CLINICALSUPPORTSERVICES

EDUCATION &INFORMATION

PHYSICALACTIVITY

REVIEWCARE PLAN

PHYSIOTHERAPY/OCCUPATIONAL THERAPY

DIET & NUTRITION

SEXUAL ISSUES

LYMPHOEDEMA

SELF MANAGEMENT PROGRAMMES

INFORMATION/EDUCATION DAYS

INFORMATION PRESCRIPTIONS

DIAGNOSISCLINICAlREVIEW

NEEDSASSESSMENT

WRITTENCARE PLAN



OTHERSUPPORTSERVICES

NEEDSASSESSMENT

TREATMENTSUMMARY


SUPPORTIVE AND PALLIATIVE CARE

TRANSITION TO END OF LIFE CARE

PROFESSIONAL LED FOLLOW UP

SUPPORTED SELF MANAGEMENT

MDT

TIMELY RE-ACCESS

REMOTE MONITORING

CONSULTANT LED

NURSE SPECIALIST LED

TRUST LED EXERCISE PROGRAMMES

REABLEMENT/SOCIAL CARE

FINANCE AND BENEFITS

VOCATIONAL REHABILITATION

COMPLEMENTARY THERAPIES

VOLUNTARY SECTOR/SUPPORT GROUPS

TREATMENT(CURATIVE/PALLIATIVE)

First line and/orsubsequent

MDT

RECURRENCE/SYMPTOMS/ABNORMAL TESTS

TREATMENTDECISION

LOCAL AUTHORITY, COMMUNITY ORPRIVATELY LED EXERCISE SCHEMES

+


13


14

There will be support elements of thepathways which are unique to individualtumour types and other elements whichare general. That being said there mayneed to be investment in training andsupervision of health care professionals inthe assessment of patients moving fromrecovery to sustaining that recoverythrough a focus on remote monitoringand promoting health and wellbeing.

Key elements to support self-management: • Information and education appropriate to the individuals needs.

• Key contacts for care/support in and out of hours for cancer and non-cancer related problems.

• Efficient and reliable processes for re-accessing the system, if required.

• Effective remote monitoring as appropriate.

Key learning from teams onimplementing the pathways:• Ensure there is full clinical engagement and executive support for pathway changes even where follow up services are largely nurse led.

• Understand current follow up pathway before starting to implement changes.

• Define and agree baseline measures for improvement as soon as possible.

• Engage with patients – they will tell you what it is like!

• Involve the wider team for example allied health professionals in developing the pathway.

• Review job plans to allow sufficient time for the health needs assessments.

• Be ready to provide training to those who identify a need – not 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 aslearning 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.

TELEPHONE LED

PRIMARY CARE LED

CONTINENCE/STOMA

PSYCHOLOGICAL



PHYSICALACTIVITY

REVIEWCARE PLAN


DIET & NUTRITION

SEXUAL ISSUES

LYMPHOEDEMA




CLINICAlREVIEW

INICALPPORT

RVICES

ATION &MATION

ERORTCES

NEEDSASSESSMENT

TREATMENTSUMMARY





SUPPORTED SELF MANAGEMENTTIMELY RE-ACCESS

REMOTE MONITORING

CONSULTANT LED








E)

MDT



+


15

Remote monitoring

Context and backgroundThere are many examples of how use of IT technology can improve the patient experienceand reduce follow up and associated costs. For those with long term conditions theprovision of telehealth equipment such as pulse oximetry, glucometers, blood pressuremeters, is supported by e technology to transfer results to the professional is becomingmore popular and enables care closer to home. The use and scope of telehealth medicine isgrowing rapidly and likely to have greater impact in future.

During the Rapid Review of follow uppractice (2010), a few excellent exampleswere found of where remote monitoringsystems have been introduced successfullywithin cancer services but practice wasnot widespread. In others, we found therehad been great interest in RM butprogress hampered by either local ITarchitecture, IT development time, lack offull multidisciplinary teams (MDT) supportor concerns around financial loss resultingfrom reduced outpatient activity. Of themonitoring systems identified some werebuilt into existing IT systems, others asstandalone databases but none werefound to interface with all the relevantTrust IT systems therefore necessitatingmanual entry of data and consequent riskof transcription errors. Standalonesystems are not always supported by localIT teams.

REMOTE MONITORING


16

The approach agreed within this projectwas to design a RM system that allowedthe cancer specialist to continue toschedule and monitor simple tumourmarker and other routine tests withoutthe need for associated face to facefollow up appointments. Results are readby the specialist team and any signs ofrecurrence rapidly picked up by thespecialist and referred to the MDT foradvice if required. Remote monitoring inthis context has little or no impact onprimary care demand.

The NCSI through NHS Improvementsponsored the development of tworemote monitoring modules, for prostateand colorectal cancer patients. This wasdone in partnership with North BristolNHS Trust (NBT) and Royal UnitedHospitals Bath NHS Trust (RUH). Thefunctional requirements for both moduleswere developed by the project team (seeappendix 1). The module design wasbased on the PSA tracker solution whichoriginated in the urology department atRUH. Both modules draw demographicand cancer specific information and testresults from local IT systems. The modulesstore a series of standard letters to enablerapid dissemination of results. Themodules were developed duringspring/summer 2011, released for testingin July and August and made available toTrust teams to implement soon after.

Consideration was given as to whetherRM should be primary or specialist carebased. For the following reasons the latterwas agreed:

• On site remote monitoring systems should allow interface with cancer information and all other diagnostic systems.

• More patients are likely to be suitable for being remote monitoring if results are reviewed by the specialist.

• Signs of recurrence can be investigated and addressed rapidly by the specialist team without the need for referral.

• Patients defaulting on tests will be followed up rapidly. GP systems generally have good scheduling systems but not all have systems that track defaults.

• Further treatment can be initiated rapidly i.e. changes to hormone therapy.

• Many patients prefer to remain under the care of their cancer team especially following long and complex treatment and they know the team well.

• Not all GPs are aware of the implications to changes in test results and this can lead to delayed action or unnecessary referrals. This perception has led to reluctance by some specialiststo release patients to primary care in thepast.


17

Testing remote monitoring within test sites

At the start of the programme all testsites were given the option to either:

Option 1 Develop an in house remote monitoringsystem.

Option 2Use the NCSI solution for either prostate,colorectal or both.

Option 3Use an external solution.

All breast sites have implemented localRM systems for mammography with theexception of Hull team who have utilisedNBSS system (see below) for this. One sitehas yet to resolve a process issueregarding responsibility for reviewingresults and issuing of the reports topatients.

All but one of the six prostate sites(including the two associate sites at StGeorges and Royal United Hospital Bath)opted to use the NCSI sponsored solution.To date four have installed the NSCIsolution and the remaining one aims togo live within the next 1-2 months.

Of the three colorectal sites, Guys and StThomas’ and Salford opted to developtheir own in house solution and both ofthese are on schedule to go live spring2012. NBT implemented the NCSI solutionin April 2012.

Progress and learning will continue to bemonitored across all the sites and anevaluation of the patient experience ofbeing remotely monitored will be includedin the repeat Ipsos MORI survey in 2013.

Implementation of all solutions has takenmuch longer than expected and muchlearning has been generated during thislearning phase

Main issues:• IT resources – resources within all Trusts were limited with all having demanding workload commitments that took higher priority than this project, e.g. Trust information governance requirements, several sites were undergoing major IT system upgrades, one had had workforce numbers reduced and had difficulty appointing an IT project lead.

• System implementation – details aroundimplementation for the NHS Improvement solution were unavailable until late summer and this led to poor understanding of the IT requirements and the benefits of the change until lateinto the project.

• Two organisations required formal business case approval before implementation process could be started.

• The IT development team at NBT, who were supporting installation and IT support to sites, were also undergoing major system changes. This led to delaysin access advice and this reduced momentum in sites.


18

This work has highlighted the need toensure that the costs associated withmanaging patients remotely are discussedas part of service commissioning. Anysavings generated through reducedoutpatient clinics need to be off setagainst the time and resources to supportthis system. In Bath the clinical nursespecialist (CNS) has identified a need forone CNS led session per week to supportabout 750 patients on remotemonitoring.

Other sites have opted for additionaladministrative support to the CNS. As wellas sending reminder letters to those whohave defaulted they can also print andarrange postage of result letters andtriage enquiries to the dedicated patienthelpline.

ResultsFrom the patients perspective there hasbeen overwhelming support for thismodel of care. In at least three sitesgroups of patients have be asked for theirviews and they said that as long as theyare informed, can have access to thespecialist if they are worried and knowthat they are still ‘being kept an eye on‘by their specialist team this model of carewill work well for them.

We have only just started to see theimpact but already know that over aperiod of six months and across thetest sites of over 3,400 prospectiveappointment slots within prostateand colorectal cancer will or could bereleased as a result of using remotemonitoring systems. Though this robustmonitoring system those ‘lost’ to followup should be greatly reduced. As practiceembeds and confidence in this form ofmonitoring increases, there is expected tobe a steady rise in those enrolled to thismodel as those in current follow up aretransferred. After this, referrals areexpected to plateau with patientstransferred when clinician and patient feelthe time is right. .

“Its better on both sides asit saves time for everyone,and we don’t have to keepcoming up to the hospital”

Patient


19

Key learning and top tipsThanks go particularly to the team at StGeorges for their full evaluation reportand feedback following implementationof the NCSI prostate module.

• The project focus needs to be around providing a service with which patients and professionals should feel comfortable and that they feel improvesthe quality and effectiveness of care. It should not be seen as a cost cutting exercise.

• Project depends heavily on clinical involvement which can be an issue if workload is extremely heavy. Clinical leadership, time and enthusiasm are keylevers to success.

• Patient representation is essential for success and to challenge the team if patient interests are not being fully considered. Patients need to feel totally reassured if they are being asked to move to a new system of follow up.

• Stratified pathways can be introduced inadvance of the IT solution being in placeor the full system integration being complete. The module can run as a standalone database or using simple locally held spreadsheets held on the Trust shared drive.

• Early discussion should take place with commissioners on the benefits and additional improvements that the RM system will bring for patients and how for GPs it also reduces the need for patients to see them. This encourages them to work with the Trust to properly fund follow up pathways. Consider the

baseline of activity carefully when setting the urology SLA. It is suggested that in year one the number of adjustment of new to follow up ratios isagreed unless the Trust is confident it can deliver clinically and technically.

• Beware of local geography and processing of samples. The NCSI solution requires the PSA sample to be processed within the local pathology unit and recorded on the lab system for extract to the monitoring tool. Patients living on the periphery of the catchmentarea may have their phlebotomy samples measured elsewhere. This may limit the scope of the tool and has the potential to create a postcode selection of which patients can be enrolled on thesystem. This may raise further issues as pathology services are centralised to major hubs.

• Different laboratories may have differentmethods of analysing the test which means results can be misleading if compared one against another. Best to be consistent if possible with samples processed with the same kit on each occasion.

Recommendations and top tips• Baseline data - Ensure you have good baseline measures in place on current clinic and follow up numbers that you can use to show improvements. Only then will you be able to judge what difference the system has made.


20

• Project management – Plan the project well – spend time considering the requirements, responsibilities and timescales and consider the risks and how you might mitigate against these.

• Project team - ensure you have a strong clinical lead who will be able to motivate peers and who is prepared to devote sufficient time to the project activities. Ensure you have a good IT manager on the team who has the knowledge and authority to resolve IT issues that arise.

• Ensure sufficient resources are available to support the project and implementation. The suggested resources from one site included suggested 20 days dedicated IT time, project management one day per week for six months.

• Engage with stakeholders – patient and GP representatives on the group ensure that their interests are considered at every stage.

• Communicate the project within the Trust – keeping fellow clinicians, colleagues and patients in the loop can help sell the benefits and raise awareness of what the Trust is trying to achieve.

• Phlebotomy services - Meet early withprimary care colleagues to discuss implications relating to phlebotomy demand. Contracts relating to phlebotomy services vary with some GPsfunded to provide a service for GP related requests only whilst others funded to also cover hospital generated requests.

• Results – Aim for consistency over time using same analytic method for all test results which will give an accurate trend. Where this is not possible, due todifferent analysis machine, lab results need to be given a corrected value so they are consistent in the trend analysis.

Other items to note:• CSV file extracts are available from North Bristol Trust to enable interface between the Somerset Cancer Registry System and the NCSI solution. A similar extract is available to provide the interface with the InfoFlex clinical information system. Specific functionality has recently been introduced to the Infoflex system which will be available to those Trusts using InfoFlex.

• Teams should ensure governance procedures such as standard operating procedures are in place to support the remote monitoring systems.


21

The 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 CancerScreening Programme (NHSCSP) boardagreed to extend the use of the NBSSsystem to non-screening sites allowinguse of parallel module of the NBSS systemto schedule and monitor mammographyfor patients who have been treated forcancer. No charge is made for using thesystem however organisations areexpected to fund any additional licenses,support and operational resources.

Further information on this is available by contacting Sarah Sellars at:[email protected].

Three of the five breast sites (Ipswich,Bristol, Hillingdon) already had in housesystems established for managing annualmammography.

In Ipswich, a referral form is completed atthe post surgery MDT and returned to thebreast screening unit who book thepatient into a mammography follow upclinic on the hospital PAS system. A letterinviting the patient is sent four weeksbefore the first test is due and subsequentappointments made each time the patientattends. This continues annually for fiveyears after which women between 47 -70years will be transferred to the breastscreening programme and those under 47with continue mammograms annuallyuntil screening age is reached. Allmammograms are double read byscreening radiologists and results sent tothe patients via a standardised lettergenerated from PAS and copied to thespecialist and the GP. If a radiologicalabnormality is reported the case isdiscussed and the patient recalled to thescreening unit for further investigation.


22

In Hull, an automated recall system formammograms has been set up using theNBSS system above and is run by staffwithin the Hull and East YorkshireHospitals NHS Trust Breast Unit. The firstpatients are now starting to be recalledthrough this system.

Next stepsDiscussions are taking place with othersystem suppliers to explore the potentialto develop integral monitoringfunctionality to avoid some of thedifficulties associated with interfacing thesystems.

Learning from this work is still on-going.For new sites the following documentsmay 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.

TELEPHONE LED

PRIMARY CARE LED

CONTINENCE/STOMA

PSYCHOLOGICAL



PHYSICALACTIVITY

REVIEWCARE PLAN


DIET & NUTRITION

SEXUAL ISSUES

LYMPHOEDEMA




CLINICAlREVIEW

INICALPPORT

RVICES

ATION &MATION

ERORTCES

NEEDSASSESSMENT

TREATMENTSUMMARY






REMOTE MONITORING

CONSULTANT LED








E)

MDT



+


23

Care coordination

Care coordination is the seamless experience of care which encompasses information andcommunication between patients, their carers and providers, and between those providingservices across the whole patient pathway. It is therefore a function to ensure that as far aspossible those who will be working in partnership with patients have access to appropriateinformation (with the patients consent) to provide an effective service. Care coordination isnot one person’s role, job or responsibility. It is the joining up of services, coordinatinginformation and communication between patients their carers and professionals to ensurethey receive or can access services when they need them.

An evaluation was commissioned throughIpsos MORI and has recently beencompleted. The purpose of the evaluationwas to find out find out from patients andprofessionals what their experiences andexpectations of care coordinate are. Asummary of this qualitative survey can befound in the evaluation section of thisreport.

The guiding principles of carecoordination are:• Good communication and professional relationships, formal and informal, between the patient, their carer/family and the care or support team.

• Proactive and prompt access and intervention when needed.

• Appropriate provision of correct information to enable individual choice and control.

• Proactive monitoring as necessary (remote monitoring where possible).


24

• Transition of care along the pathway should appear seamless to the person receiving the care.

• Provision of correct information for healthcare professionals to support effective patient management in the event of care delivery away from their usual care team e.g. hand held record.

The key areas of care coordinationaddressed during this phase have been:• Assessment and care planning includingtreatment summaries.

• Information, education and advice.• Self-management and timely re-access.• Working across care sectors and organisations.

Assessment and care planningincluding treatment summaries

NHS Improvement has worked with theNCSI project manager leading onassessment and care planning to ensurethat there was cohesion between thedevelopment and application of thedifferent tools. The key areas of focuswere to test in practice the assessmentand care planning tools and the use of atreatment record summary.

There were a number of clinicalprofessionals who felt that their currentskill-set had not prepared them for thechange in the conversation or in use ofthe assessment tools; moving from thepatient as a passive recipient to one whoidentifies their own needs and makeschoices and takes control of managingtheir own health based on the

information and advice they receive. Toovercome this skills deficit, training wasarranged through the assessment andcare planning project lead to provideCNS’s with skills around motivationalinterviewing, and use of the assessmenttools. All of the test sites took up theoffer of training in motivationalinterviewing (working with patients to setgoals to help enable self-management),with several sites taking up the offer ofassessment skills training with particularfocus on managing distress.

Challenges arose where CNS’s inparticular were required to undertake amore structured form of assessment andcare planning at the end of treatmentwhere this may have been the first time aformal holistic assessment and careplanning session with the patienthappened. There was also the potentialfor inequity where CNS’s were unable tosee all patients and to offer them supportat the key areas of the pathway. A way toreduce the resource demand at the end oftreatment is to undertake an assessmentand commence the written care plan atdiagnosis, update during treatment andreview it at the end of treatment or at keystages when changes in the patientscondition occurs, or the managementplan changes.

The Distress Thermometer was chosen asthe self-assessment tool of choice thatwould inform the assessment needsdiscussion with the patient. Followingpatient feedback and the perceivednegativity of the word distress, a number


25

of sites supported the redesign of the toolas a ‘Concerns Checklist’ or similar. Theuse of self-assessment by patients hasraised awareness of patient need andprovides the framework for discussionand resolving the concerns raised.

The treatment summary gives informationon diagnosis, treatment, the clinicalmanagement plan and includes signs andsymptoms to look out for. (The care planmay be integrated into the document ormay be a separate document)The impending launch of electronicversions of the treatment summary withinthe Somerset and InfoFlex systems shouldhelp the completion of these by theclinical teams.

The focus of this work has been onproviding information, education adviceand 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 onindividual patient needs. These include1:1 discussions, information prescriptionsand booklets, group information sessions,health and wellbeing clinics, and courses.

In Bristol there were a number ofapproaches ranging from ½ day ‘livingwell’ information days, self-managementcourses taking a cognitive behaviouraltherapy (CBT) approach, residential livingwell courses in partnership with PennyBrohn Cancer Care.

The uptake on the information days wasbetween 30-50% of those invited.Evaluation of why people didn’t attendwas that they didn’t feed they needed it,or the timing was inconvenient. Some ofthose who attended the information dayswent on to attend one of the courses.

The information days in Ipswich haveproved popular for those reluctant toundertake the ‘moving on’ course.However some of those attending theinformation day went on to attend the‘moving on’ course. The moving oncourse runs weekly with 12 places oneach course. The course runs for fourweeks with a two and a half hourcommitment a week. The course includes,self-management strategies, goal settingand many of the common issues andconcerns raised by cancer patientsfollowing initial treatment and longer temconcerns.


“I didn’t think I needed anymore information, how wrong

I was. I had my head in thesand. Now I feel confident totake charge and know where

to get help if I need it.”Patient


26

Working across care sectors andorganisationsBuilding relationships and networks iscrucial to improving care coordination –not just within the NHS, but beyond tosocial care, charities, community careproviders and other agencies that meetthe needs of individuals. As has beenreflected back to us during this testingphase it is the quality of theconversation/discussion betweenprofessionals and patients/carers andbetween professionals in different settingsthat reap greater benefit than checklistsor paper as understanding comes fromthe context rather than just the writtenrecord.

This is where patients who have a writtenrecord of their diagnosis, treatment andfuture plan within a hand or electronicrecord is helpful in avoiding duplication ofeffort and the patient or carer can supplythe context behind the written record.This will help to facilitate efficienttransfers of care throughout the pathway,wherever they occur, whether tovocational rehabilitation, physiotherapy,voluntary services, social care, or end oflife care.

“The most surprising and pleasing thing aboutthis project was discovering what facilities

already existed in the community and that byexploring these and networking with providerswe could greatly enhance our service simply bybeing aware of existing external services and

using them properly.”Healthcare Professional

TELEPHONE LED

PRIMARY CARE LED

CONTINENCE/STOMA

PSYCHOLOGICAL



PHYSICALACTIVITY

REVIEWCARE PLAN


DIET & NUTRITION

SEXUAL ISSUES

LYMPHOEDEMA




CLINICAlREVIEW

INICALPPORT

RVICES

ATION &MATION

ERORTCES

NEEDSASSESSMENT

TREATMENTSUMMARY






REMOTE MONITORING

CONSULTANT LED








E)

MDT



+


27

Evaluation

Evaluation findings from patient survey on follow up costsA prospective patient survey was carried out in 12 organisations during the summer of2010. The purpose of the survey was to understand the non-healthcare economic cost tothose attending outpatient visits. There were 837 returned questionnaires from adultsattending outpatient appointments following treatment for either prostate, breast,colorectal or head and neck cancer.

The key findings from the survey were:• The average non-healthcare economic cost of a single clinic visit ranged from £21 to £54 across the hospitals surveyed, mostly driven by time taken off work. The overall average was £41.

• These average costs ranged from £227 to £857 when calculated for all clinic visits over five years. The overall averagewas £437.

• 24% of respondents reported new symptoms that they had not yet discussed, with higher percentages in prostate and colorectal, and some lower percentages in breast.

• 71% of respondents had seen their GP at least once since their previous appointment, although some of these GP visits will be unrelated to cancer. Theaverage number of GP visits varied from1.8 to 4.2 across the hospitals surveyed,equivalent to an economic cost of £65 to £148 (overall average: 2.7 visits with an economic cost of £95).

• 38% of respondents reported being seen by another healthcare practitioner since their previous clinic, although again some of these consultations will be unrelated to cancer. The percentage varied from 29% to 55% across hospitals.

• 23% of respondents reported attendinganother (potentially unrelated) specialist clinic since their previous appointment, varying from 16% to 29% across hospitals.

• Most patients travelled by car to their appointment, with the notable exception of Guy’s and St. Thomas’ where 87% of patients used public transport. Journey times were half an hour on average, ranging from 15 minutes to 51 minutes across hospitals.

• Only a small number of patients reported that their journey was stressful,leading to an average score of 2 (where 1 is least stressful and 10 is most stressful).


28

• 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 takenby both the patient and those accompanying them, each appointment is associated with around one quarter ofa 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).


29

Test site baseline quantitative and qualitativeevaluation of aftercare service provision for patientswith breast, colorectal or prostate cancers

The evaluation consisted of two elements:

• A quantitative baseline survey to collect robust data on patient experience and reported outcome of care and support. The full report can be found at: www.improvement.nhs.uk/cancer/survivorship

• A qualitative and in-depth study to explore patients’ experiences of carecoordination and understand their personal journey along the new risk stratified pathway, as well as staff perceptions of how this is working. The 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


30

1. 58% rated their care as very good or excellent.

2. 78% felt they had all the information advice and support they needed to manage their health.

3. 37% did not feel they had all the information they needed to identify signs and symptoms of recurrence.

4. 83% felt confident to manage their own health.

5. 42% had taken action themselves to do more physical activity.

6. Only 12% who had experienceda fear that cancer will come back have been able to take action themselves.

7. Only 5% who have problems with erectile function have taken action themselves; 45% who have not taken action continue to have problems.

8. 21% patients reported having a care plan and 84% of those found it useful.

9. 77% of patients knew who to contact in 'office' hours. 71% had contacted a healthcare professional.

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.

KEY FINDINGS:

Quantitative baseline survey on patient experienceand reported outcomes of care and support

SUMMARY REPORT

This report presents the findings from thefirst wave of a service evaluation studycommissioned by NHS Improvement, whichaims to provide a baseline for the 11tumour projects within the seven TestCommunities (TCs) who tested a newmodel of care which included risk stratifiedcare pathways in Adult Cancer Survivorshipservices, as part of the National CancerSurvivorship Initiative.

The research was conducted using aquantitative methodology. A 12-pagepostal questionnaire was sent to 1,862eligible patients across 11 tumour projectsat 7 TCs. A total of 1,301 completedquestionnaires were received back,representing an adjusted response rate of70%.

Overall quality of careOverall, patients were positive about thequality of care and services they hadreceived, since their initial treatmentfinished. Almost six in ten (59%) rated it as‘very good’ or ‘excellent’. However, withthe service provided to patients particularlyimportant, the six percent of patients whofelt that they had received, at best, a poorservice should not be overlooked.


31

In particular, prostate cancer patients wereless likely to say that they had received a‘very good’ or ‘excellent’ service. Only halfreported this (53%), compared to two-thirds (66%) of colorectal cancer andthree-fifths (61%) of breast cancerpatients.

Patients cited a range of issues that couldlead to improvements in overall care, suchas more information or advice (9%) orimprovements to care, aftercare or careplan (5%).

Patients’ need for advice and supportPositively, almost eight in ten patients feltthat they did have all the information,advice and support they needed in order tomanage their health (78%).

Beyond this, large proportions of patientshad not had, but did not need information,advice or support to:• Help them to continue living in their own home (74%).

• Cope with their financial issues (71%).• Help them with the other practical things (71%).

However, there appears to be aninformation deficit in terms of providingpatients with all the information they needabout 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.

Only a very small proportion of patients(5%) said that they have received anyinformation too late for it to be of use.

Self-managed careOverall, a large majority of patients (83%)said that they were confident managingtheir own health.

Across a range of problems that patientshad experienced, either since their initialdiagnosis for cancer or since their initialtreatment had finished, patients displayeda greater ability to self-manage someproblems.

For example, more than four in tenpatients (42%) who did less physicalactivity or exercise, since their diagnosis,had taken action themselves to do more.

Similarly, a third (34%) of patients who hadnoticed a change in their weight,compared to pre-diagnosis, had takenaction themselves to deal with this.

However, patients are much less able todeal with some other issues, namely:Around one in eight (12%) who haveexperienced a fear that the cancer willcome back have dealt with this bythemselves.


32

Only one in ten (10%) experiencing achange in their interest in sex (that theywere not happy with) have taken actionthemselves to improve this.

Just five-percent (5%) of patients whohave had problems with erectile functionsince before their diagnosis have takenaction themselves.

Indeed, more than four in ten (45%) ofpatients who have experienced erectilefunction problems since their diagnosishave not done anything in particular andcontinued to have problems.

Contact with health professionalsOnly around one in five (21%) patientsreported having a care plan. However, ofthose who did have a care plan, theoverwhelming majority (84%) did say thatit is useful. The presence of a care plan is afactor in a number of different aspects ofpatients’ experience of aftercare services.

Over three-quarters of patients (77%) saidthey did know who to contact duringoffice hours if they have a concern relatedto their cancer or their treatment for it, anda further ten per cent said they do notknow, but would know how to find out.

Almost half of patients (47%) hadcontacted somebody during office hours –and seven in ten (71%) had contacted theircancer hospital nurse, whilst two-fifths(38%) have contacted their GP.

When it comes to contact out of hours, amuch lower proportion of patients saidthey do know who to contact (only 38%),although one in five (20%) do know howto find out. Only one in seven (14%) hadever had to contact somebody out of officehours with a concern related to theircancer or their treatment for it. Almost sixin ten (59%) had contacted the hospitalwhilst approaching three in ten (28%) hadcontacted their GP or out of hours service.

More than half of patients (53%) had notcontacted their GP in the last six monthswith a concern about their cancer ortreatment for it, whilst 38% had done sobetween one and five times.


33

1. Professionals supportive of risk stratification as good for patients helping them to move on.

2. Good communication seen as central to patient experience.

3. Relationship between patient and professional key to patients’ perception of care coordination.

4. Important for patients to know who to contact when problems occur.

5. Some patients did not report problems as they thought they were not serious enough, or nothing could be done to resolve the problems.

6. Monitoring is key to providing safety net for patients.

7. Some patients concerned they would not recognise signs and symptoms of recurrence.

8. Further work is required to ensure healthcare professionals are confident.

KEY FINDINGS:

Qualitative and in-depth study to explore patients’experiences of care coordination

SUMMARY REPORT

Implementation of the visionThe interviews with project managers andstaff showed that implementation of thevision and the approach to riskstratification had varied locally.

At the time of the study, most TCs hadstarted to stratify patients and had movedsome patients on to a self-managedpathway. As such, some had replacedconsultant led follow up appointmentswith nurse led follow up (either in personor over the telephone) and were usingremote monitoring where possible.

The TCs were carrying out assessments andcare planning with their patients;sometimes this was offered to patients atthe beginning of treatment, sometimespost treatment. They had also developedand expanded the information andeducation they were providing to patients,often through the use of information daysand self-management programmes.


34

Staff were very supportive of riskstratification – they thought it was goodfor all patients, because those that wereself-managed would be empowered tomove on with their lives, while those onprofessionally led pathways or still intreatment would benefit from more timewith consultants. Most said that patientsreacted well to the idea of self-management if it was explained properlyand introduced at an appropriate point sothat it did not contrast with theirexpectations for aftercare; several nursessuggested that only new patients shouldbe moved on to a self-managementpathway. There were, however, somequeries about how stratification decisionswere being made locally and someconcerns about the need for increasedresources for assessment and careplanning.

Care coordinationPatients, staff and charity contacts wereasked for their thoughts on whatconstituted good care coordination.Patients and staff were also asked abouttheir own perceptions and experiences ofcare coordination within the TCs and thesehave been considered under headings thatbroadly follow the guiding principles forcare coordination produced by NHSImprovement:

Good communication andrelationships:• While staff saw good communication between patients and professionals as generally important, they emphasised its role in promoting self-management to patients in a positive manner.

• Patients placed a great deal of importance on how staff communicated with them.

• Clear and comprehensive explanations about their care meant that they could be involved as much as they wanted to be in decisions about their care and they reassured them about what was happening. Experiences were largely positive, but when communications werenot good, patients did start to question whether their care was being coordinatedproperly.

• The relationship between patients and the healthcare professionals was particularly key to patients’ perceptions of care coordination. They often saw the Clinical Nurse Specialist (CNS) as their care coordinator; it was this person that acted as the ‘thread’ that ran through their aftercare, reassuring them that they were in safe hands.


35

Proactive and prompt access whenneeded:• Staff and charity contacts welcomed a greater focus on assessment and care planning, and staff gave examples of where new services had been developed as a result of unmet needs being identified in the assessments. Some staff said that they were now aware of, and using, a wider range of existing services to meet their patients‟ needs. The need to make better use of community based services, including those provided by the voluntary sector was emphasised by charity contacts in particular.

• Some staff mentioned frustrations where relevant services were not always available, although this may be due to a lack of awareness around the services available or where to find more information about them.

• Most importantly for patients, they wanted to know who to contact in the case of problems. In most cases, this was the CNS and where they had contacted them, this had generally been a smooth process, with a few exceptions.

• Some patients said that they hadn’t made contact with the CNS or any other professional, despite having concerns or queries. This was often because they thought their problem wasn’t sufficiently serious, or that there was nothing that could be done about it.

Proactive monitoring as needed:• The TCs had not yet been able to fully implement remote monitoring systems due to.

• IT issues. In some cases this had prevented the TCs from moving people on to self-managed pathways.

• Monitoring was extremely important for patients as a key safety measure. For those patients on a self-managed pathway, their greatest concerns were related to their cancer returning, and recognising the signs and symptoms of their cancer returning.

• Patient comments indicate a lack in confidence to handle this by themselves without regular follow ups. Knowing thatsomeone was looking at the results of their scan or blood test was often the reassurance they needed.

Seamless delivery of care along thepathway:• Cross site working did not appear to worry patients, as long as the person they were seeing was fully informed about their care. A greater problem was the transition from treatment to aftercare. Rather than appearing seamless, several talked about the emotional impact of moving to little or no contact after the intensity of their treatment. It was at this point that they were most likely to question the coordination of their care.


36

• Staff and charity contacts discussed the delivery of care across primary and secondary care. They generally thought that it was not well coordinated. Patients gave a few examples of where they had faced problems and where the respective services had not been well joined up. However, most patients had not tried to talk to their GP about their cancer. Staff and charity contacts picked up on this point, as several thought that there should be an enhanced role for primary care in coordinating aftercare services, but they thought there was some resistance to this. They attributed this to a perception of cancer as a specialist condition.

Information for effective patientmanagement:• All participants agreed that the information flow between services and professionals was critical to good care coordination. For patients, it was important that the person caring for them knew their medical history. Their experiences were generally good, but where it had gone wrong, it severely eroded their confidence in the system. Hand held records did not appear to be widely used, but patients valued them when they were used.

• Patients generally thought that their GPs were well informed about their cancer and its treatment – though, in line with the earlier point, they did not expect them to be particularly well versed in managing their cancer.

Potential enablers to goodcoordination As discussed above, for patients, often thegreatest contributor to good carecoordination was the CNS. This person wastheir point of contact who answered theirqueries, referred them on, or signpostedthem to, other services and was their routeback into the system if necessary.

Staff and charity contacts were more likelyto see assessment and care planning as thekey to successful care coordination. Thisallowed them to understand their patients‟needs and ensure that these were met, andto establish the patient’s ability to self-manage. Finally, all TCs had expanded theinformation and training given to patients.However, some staff felt this did not yet gofar enough. They wanted to see the toneshift to have a more inspirational focus,rather than simply providing informationabout services. While they felt that it wasimportant that patients had access toinformation about the support available tothem so that they could coordinate theirown care, staff thought it more importantthat patients were given the skills andconfidence to take on this responsibility.


37

Barriers to good care coordination Barriers to good care coordination(particularly within the new risk stratifiedpathways) were discussed in terms ofstructural, cultural and resourcing issues.While some of the structural barriersrelated specifically to changes within a TCat the time of the pilot, others have widerimplications. These related to thechallenges of implementing new ways ofworking within established structures andsystems. 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.

Evaluation conclusionThe baseline evaluations have given us arounded view of the implications of followup on patients and where we need tomake improvement to effectively meettheir needs and that the costs they incuradd value to them and how they managetheir health. A follow up evaluation will becarried out to ensure that the changedpathways have had a positive impact ofthose living with and beyond cancer.

BREASTVisit our website at: www.improvement.nhs.uk/cancer/survivorship

38

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 routineoutpatient 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.

1Department of Health and NHS Improvement: Survey of patients in follow up clinics (October 2010)2Ipso MORI Social Research Institute - NCSIEvaluation of Adult Cancer Aftercare Services- Wave 1 Report (28 October 2011)


39

1. Background and context - breastcancerBreast cancer survival has been improvingfor the past 20 years with current five yearsurvival currently standing at over 80%.Researchers at Cancer Research UK predictthat 64% of women diagnosed recentlywith breast cancer will live for at least 20years.

The traditional model of follow up ofbreast cancer patients has been to offerregular clinical review in the outpatientclinic over a period of 3-5 years prior todischarge to the GP. We know thatdetection of recurrence is sometimesdelayed where problems present inbetween appointments and worryingsymptoms and signs are not recognised bythe patient.3

Increasing demand within often large busyand overbooked clinics means that staff donot always have sufficient time to assessand support patients who may still havecomplex emotional and psychosocial needsafter their treatment has ended.

The NICE quality standards for breastcancer4 and the NICE clinical guideline5

to which the standard refers state thefollowing in respect to follow up of breastcancer patients:

The supporting guideline states:• ‘Patients in remission treated for breast cancer should have an agreed, written care plan, which should be recorded by a named healthcare professional (or professionals), a copy sent to the GP and a personal copy given to the patient. Thisplan should include: • designated named healthcare professionals;

• dates for review of any adjuvant therapy;

• details of surveillance mammography; • signs and symptoms to look for and seek advice on;

• contact details for immediate referral tospecialist care; and

• contact details for support services, for example support for patients with lymphoedema.’

‘People having treatment forearly breast cancer are offeredpersonalised information andsupport, including a written

follow up care plan and detailsof how to contact a named

healthcare professional.’NICE Quality Standard

3Donnelly, J., Mack, P., and Donaldson, L.A. (2001). Follow up of breast cancer: time for a new approach? IJCP, 55: (7), 431-34NICE Breast cancer quality standard(29 September 2011)5NICE Clinical Guideline CG80 - Early and locally advanced breast cancer - Diagnosis and treatment. Published February 2009

On clinical follow up, NICE guidance states:‘After completion of adjuvant treatment(including chemotherapy, and/orradiotherapy where indicated) for earlybreast cancer, discuss with patients wherethey would like follow up to beundertaken. They may choose to receivefollow up care in primary, secondary, orshared care’

Five breast teams were selected to join theprogramme in January 2011 to test thefollowing hypothesis:

By introducing risk stratified pathways ofcare for patients following a diagnosis ofbreast 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 patientgroups and patient volunteers toparticipate in the change process andadvise professionals on the bestapproaches


40


41

2. Team profiles and baseline position Five breast teams were selected inHillingdon, Ipswich, Hull, North Bristol andBrighton.

Hillingdon

Ipswich

North Bristol

Brighton

Hull

New breast referrals p.a

148

300

382

223

174

Follow up attendance

8 OPA over 5 years

9 OPA over 5 years

4 OPA over 5 years

9 OPA over 5 years

6 OPA over 5 years

Comments

60-65% of patients were onopen access pathway from thestart of the project

70% of low risk patientsdischarged after three years

Several teams prior to this programme hadalready started to reduce the period offollow up and some already had systems inplace for regular mammographysurveillance with results by post ratherthan at an outpatient clinic.

At Hillingdon, the team has offered a self-managed follow up model of careimmediately following end of treatment forthe past eight years with on-goingtelephone support from the CNS and directaccess back to the surgical oncology breastteam if required. In Ipswich about 70% oflow risk patients were already offered self-management at two years.

Whilst early discharge from outpatientfollow up had been implemented in someTrusts all were keen to provide a moreformalised approach to holistic needsassessment; to develop the treatmentsummary and care plan; and improveinformation, education and supportservices for patients.

During summer 2011, Ipsos MORIundertook a quantitative baseline patientexperience and outcome survey6 amongstbreast cancer patients from the test siteswho were between six months and twoyears post treatment. 589 survey responseswere returned representing a response rateof 70%.

6Ipsos MORI Evaluation of Adult Cancer Aftercare Services - Wave 1 Report, October 2011 - Breast

The main problems affecting breastcancer patients were:• Fatigue and sleep issues;• Insufficient information on signs and symptoms of recurrence; and

• Fear of recurrence.

Project workstreams Work programmes in each test site focusedon the following areas:• Risk stratification – criteria and process• Holistic needs assessment, written care plans and treatment summaries

• Education and information• Support services• Mammography screening.

3. Actions and outcomes Risk stratificationDuring summer 2010 a group of leadingclinicians suggested there may be threepossible pathways for breast cancerpatients following completion oftreatment:

1. Supported self-management pathway (green) with 70% expected to be suitable;

2. A shared care pathway (amber) for 10% patients; and

3. A complex care pathway (red) for the remaining 20%.

Testing demonstrated there were just twopathways in practice for breast cancerpatients with 75% suitable for self-management and 25% to continue toneed professional led follow up. The teamsalso agreed that more of an ‘opt out’approach should be taken i.e. All patientsshould be offered a self-managed pathwayunless complex criteria applied.

Clearly circumstances will differ and it willalways be a joint decision between thepatient and the team as to which pathwayis the right one for the individual. Somelow risk patients prefer to continue withface to face appointments and others,however poor the prognosis may opt for aself-managed pathway only contacting thespecialist when they feel they need to.

Patients not normally eligible for a self-managed pathway would be those whoare:

• On active treatment • With advanced or metastatic disease• Holistic needs assessment score with remaining high levels of psychological distress

• On-going side effects of treatment• Language, educational or social issues 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

One unit uses the Nottinghamprognostic index (NPI)7 to determineprognosis following surgery for breastcancer and as a further guide topathway selection.

In considering the process for deciding themost appropriate pathway there were anumber of subtle differences in approachbetween sites.

In Hillingdon, following completion oftreatment, all patients are offered a self-managed or ‘open access’ pathway. At the‘exit’ interview the doctor discusses andreassures the patient of the on-goingmammography surveillance, the openaccess to CNS led telephone support andthe direct access back into the oncology orsurgical clinics if required.

Over 300 patients have been transferred toopen follow up over the past five years.This team identified at the start of theproject that numbers of patients enteringtheir self-managed pathway had decreasedin recent years if seen at their ‘exitinterview’ by the specialist registrar ratherthan the consultant. Changes introducedto te induction training for all new doctorshas helped to reverse this trend (see figure 5 below).


43

7Haybittle 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.

Figure 5: Breast patients on open follow up - 2007 to 30 November 2011

31

68

57 53

93

OFPC2007

OFPC2008

OFPC2009

OFPC2010

OFPC2011

In Ipswich the proposed follow up pathwayis discussed at the post surgery MDT and areferral form for continued mammographyscreening is completed. At the nextappointment with the consultant or CNSthe proposal is discussed. Of the 146patients who opted for this pathway, over90% were transferred within three monthsof the end of treatment (surgery and/oradjuvant therapy) with the remaindertransferred after six months.

In Brighton, breast patients under the careof the oncology team are offered a self-managed pathway once they reach the oneyear milestone by which time the acuteeffects of therapies have usually diminishedand the first check mammogram has beenperformed. At this one year appointmentthe consultant explains the pathway andensures the patient has the knowledge andability to self-assess.

The patient is asked to complete a distressthermometer which guides theconsultation (this is subsequently passed tothe CNS). Lifestyle advice is also providedand patients with BMI>30 invited to attendthe ZEST exercise programme8. Those withlow levels of exercise or high levels offatigue are given information about the‘Healthwalks’ Programme. Bothprogrammes are led by the local authority.

Each patient receives a letter from theconsultant (copied to the GP) explainingtheir on-going treatment plan particularlyin respect of the management of hormonetherapies, bone density scanning andmammogram intervals.


44

“Clinic times overran slightly as a consequence of the changes and the need to explain the new system

to ‘unprepared’ patients. This amounted to twominutes extra per patient. This is more thancompensated for by the future reduction in

outpatient workload and is expected to reduce aspatients are told of the system well in advance.”

NHS Professional

8www.zestpeople.co.uk/

In Hull patients are seen in the combinedfollow up clinic by a clinician followingcompletion of surgery and/or adjuvanttherapies. After this initial follow up visitpatients are invited to attend thesurvivorship clinic 12 months afterdiagnosis which enables the nursing

team to undertake a needs assessment andmake appropriate referrals depending onany unresolved needs.

Data has been collected on all sites on the% of patients suitable for a self-managedpathway is outlined below.


45

“There was scepticism amongst many team members thatpatients would accept ‘self-care’ imagining that thesepatients would value regular surveillance. When the

rationale was properly explained it became obvious thatthe opposite was the case and the vast majority of

patients we delighted to accept the logic of the scheme.”Consultant Oncologist

Hillingdon

Bristol

Ipswich

Hull

Brighton**

% suitable for self-management pathwaybased on data available*

65%

95%

72%

81%

77%

Outpatient slotsreleased

149 slots released

393

277 (based on 70% ptsreleased from routinefollow up at 2 years)

480 slots released

In excess of 400

Data collectionperiod

Over 6 months

One month audit

Over 9 months

Over 8 months

Over 3 months(oncology only)

Trust

* 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.

Holistic needs assessment (HNAs),care plans and treatment summariesIn all units the CNS aims to meet withevery patient at or soon after diagnosiswhere core information is providedincluding key worker contact numbers. Anyimmediate needs are identified and earlyreferrals made. In several sites the care planis commenced at this point (but notnecessarily issued to the patient) and this isdeveloped and updated by the specialistteam during treatment. The use of any self-assessment tool at diagnosis is at thediscretion of the professional and few felt itto be appropriate or useful to use at thispoint.

The focus in the sites has been to introduceholistic needs assessment and written careplans following completion of treatment.This has been achieved in all sites to somedegree. The use of simple self-assessmenttools such as the Distress Thermometer orConcerns Checklist were found to behelpful in focusing discussion on thingsthat mattered to the patients and in raisingissues that would not normally be beenraised during a consultation.

However, whilst the benefits andimportance of this assessment arerecognised, the resources to establish andsustain HNAs especially during transition toa new model of care, have provedchallenging for several organisations.

The Brighton team decided to take apragmatic approach and triage patients atthe appointment after the end oftreatment so that only those with

unresolved needs are seen by the CNS for aneeds assessment. Patients are asked tocomplete the Distress Thermometer as partof the ‘exit appointment’ with theconsultant and immediate needs discussed.

Those recording low levels of distress aresent a letter by the CNS after theappointment reminding them of how tocontact the CNS should circumstanceschange. Patients with higher levels ofdistress are contacted by phone and invitedto a subsequent meeting with the CNS toaddress issues that were a source ofconcern. Data is continuing to be collectedon those that contact the help line serviceafter this point.

In other sites professionals outside theimmediate site specific teams such asspecialist radiotherapy radiographers orthose leading the self-managementsupport programmes successfullyundertake the HNA and completion of acare plan.


46

The timing of the HNA varied from site tosite. In Bristol, completing the HNA oneweek after completion of surgery wasfound to be too soon and they now plan topostpone this to four to six weeks after theend of treatment or at the lymphoedemaappointment at six months. In Hull patientsare seen in combined follow up clinic bythe clinician after treatment is completedand called back one year after diagnosis fortheir first mammogram and HNA with theCNS.

Feedback from test sites suggested thatapproximately 45 minutes should beallowed to complete the assessmentsthough one site has found that the timerequired is reducing as confidence in theprocess increases. Care plans commencedat diagnosis and those completedelectronically using proforma templatesreduced the time required.

Two sites noted that the pathway will freeup consultant time and that a transfer ofresources 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 Bristolthe teams currently provide comprehensiveend of treatment letters but are planningto use electronic care plan templatesshortly. In Ipswich a combined treatmentand care plan document is used and in Hullan adapted version of the Macmillan careplan has been developed.

In Brighton, the patient treatment and on-going care plan is summarised in a letter tothe patient and copied to the GP. Severalsites issue the new Breast Cancer Care‘Moving Forward - A Resource Pack forPatients’9 and accompanying CD and thishas been very well received by patients.

At Hillingdon the letter dictated by doctorat end of treatment includes a risk ofrecurrence score.

Education and informationSome sites benefit from having excellentinformation centres where a vast array ofinformation, help and support is providedto patients and carers.

In Hull, the team are developing a localinformation website for breast cancerpatients and to help with signposting.The provisionof group learning events forbreast cancer patients following the end oftreatment have proved popular and ofvalue to patients.


47

“I thought I was the only onewho felt like me….this grouphas increased my confidence

and given me a positivedirection.”

Patient

9Breast Cancer Care: Resource pack for patients living with or beyond breast cancer (BCC197)

Attendance tends to increase with apersonal invitation from the consultant orwhere it is promoted in place of a normalclinic visit. All participating sites have eitherheld events or plan to hold them 2-3 timesper year and a variety of approaches havebeen tested.

In Bristol, two ‘Living Well’ days are heldper year for breast patients covering topicssuch as understanding the effects of breastcancer treatment on bones, diet andnutrition and changes needed to reducerisks, the importance of physical activity,breast awareness and symptom awarenessand menopause issues. For those thatidentify a need, they can self-refer onto alearning programme based on cognitivebehavioural therapy is available and run bythe clinical psychologists and CNS one halfday a week over five weeks.

In at least two organisations the events arestrongly supported by volunteers and‘expert patients’ who not only ‘meet andgreet’ but are also able to provide on-goingpeer support if needed.

The team in Ipswich, led by a clinical nursespecialist (CNS), runs a continual MovingOn programme comprising four half daysessions over four weeks. Six monthly oneday information days are held for thosewho cannot commit to weekly sessions.

The programme includes self-managementstrategies and goal setting as well othercommon issues raised by patients such asdiet, exercise, symptoms, stress andanxiety, sexuality and returning to work.

In Brighton, their information ‘event’comprised a number of talks plus access to‘market stalls’ where people could seekadvice on specific needs such as financeand benefits, complementary therapies etc. Most teams held events on site to minimisecosts and some used project funds to coverany professional sessions and hospitalitycosts.

In Bristol, leading and participating ininformation events has increased theconfidence and autonomy within the CNSteam who are sharing and supportingother teams running similar days. Aneducational programmes for nurses tosupport them delivering education togroups of patients and undertakemotivational interviewing commenced inDecember 2011.

Unplanned admissionsThe hypothesis for testing suggested thatacross the four tumour groups there wouldbe a 10% reduction in unplannedadmissions. Unlike the other cancer sites,patients with breast cancer rarely presentas emergency admissions10 (4%) unlessfound incidentally for example in elderlypatients with fractured neck of femur orfollowing an acute medical admission.


48

10www.ncin.org.uk/publications/data_briefings/routes_to_diagnosis.aspx

Clinicians from test sites advised that mostunplanned admissions for those with aknown diagnosis were due to acuteproblems such as neutropaenic episodes,or complications of surgery. There werefewer unplanned admissions aftertreatment was completed. Data collectedon unplanned admissions within beastcancer was considered inconclusive forinclusion in this report

Support servicesData has been collected by test sites onreferrals made to clinical and other supportservices for breast cancer patients. Otherthan the information events identifiedabove the services most commonly referredto were:

• Lymphoedema• Physiotherapy• Menopause clinics• Psychological support services L3 and 4• Complementary therapies• Support groups.

Several teams have worked with alliedhealth professional teams, PCTs and localauthorities to develop options for physicalactivity. Recently published data seems toconfirm that obesity is associated with ahigher risk of recurrence and that morecould and should be done to help patientsadjust their lifestyle and increase physicalactivity in response to their diagnosis11.Many patients however are confused as towhen, what and how much exercise theycan do, are unclear on the benefits ofphysical activity and lacked the confidenceand motivation to get started.


49

“The most surprising andpleasing thing about this

project was discovering whatfacilities already exist in the

community and that byworking with providers wecould greatly enhance our

service simply by being awareof 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

Initiatives ranged across the sites from apost treatment exercise programmedeveloped by physiotherapists to linkingwith local leisure centres who offersubsided rates for cancer patients. Severalteams have provided appropriate trainingfor leisure centre staff and advice on thelimitations that breast patients may haverelating to their treatment and side effectsand walking, swimming and cycling groupsare now signposted by many teams to suitpatients’ interests and wishes.

In Ipswich referrals are also made to a‘Care Farm’ initiative where people areencouraged to take up new skills such asgrowing fruit and vegetables, managingallotments, cooking and crafts. Several saythis has helped them overcome theemotional and physical impact of thedisease in a more constructive way.

Remote monitoring NICE quality standard12 recommends that‘Women treated for early breast cancerhave annual mammography for five yearsafter treatment. After five years, womenwho are 50 or older receive breastscreening according to the NHS BreastScreening Programme timescales, whereaswomen younger than 50 continue to haveannual mammography until they enter theroutine NHS Breast Screening Programme’.

All teams have established systems toensure mammography screening continuesand that results are provided in a timelyway. Several processes remain paper-basedand resource intensive but plans to improvethis are being progressed.

The Hull team have installed a parallelversion of the NBSS system to managetheir breast mammography recalls. In othersites mammography is scheduled via thenormal radiology booking system.

In Ipswich, the Trust has an establishedsystem for referring patients formammography screening followingcompletion of treatment. At the postsurgery MDT the decision is made to referand a referral form completed. Patients arebooked for their next mammography scanand results sent by post to patients by theradiology department. Any suspectedrecurrence prompts a recall back to adiagnostic clinic


50

“This experience has turnedmy life around.”

NHS Professional

12 NICE Breast Cancer Quality Standard (Sept 2011) www.nice.org.uk/guidance/qualitystandards/breastcancer/home.jsp


51

Figure 6: Stratified Pathway of Care - BreastRECURRENCE/SYMPTOMS/ABNORMAL TESTS

TELEPHONE LED

PRIMARY CARE LED

MENOPAUSE CLINICS

PSYCHOLOGICAL



PHYSICALACTIVITY

REVIEWCARE PLAN


DIET & NUTRITION

SEXUALITY/BODY IMAGE

LYMPHOEDEMA


INFORMATION DAYS



HOLISTICNEEDS

ASSESSMENT

WRITTENCARE PLAN




HOLISTICNEEDS

ASSESSMENT

TREATMENTSUMMARY





MDT MDT

TIMELY RE-ACCESS

REMOTE MONITORING

CONSULTANT LED

NURSE SPECIALIST/AHP LED







TREATMENT(CURATIVE/PALLIATIVE)

First line and/orsubsequent

OTHER/NOTREATMENT

TREATMENTDECISION


STRATIFIED PATHWAY OF CARE: BREAST

+

SUPPORTED SELF MANAGEMENTAnnual mammography until screening programme

Stratified Pathway of Care - BreastThe diagram below provides the revised pathway based on testing over the past year with thekey services required to support breast cancer patients.

COLORECVisit our website at: www.improvement.nhs.uk/cancer/survivorship

52

COLORECTAL workstream


• 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 currenttraditional 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 pathway

CTALVisit our website at: www.improvement.nhs.uk/cancer/survivorship

53

1. Background and context - colorectal cancerColorectal cancer is one of the mostcommon cancers in England with over32,000 new cases diagnosed every year.Survival rates are improving with one yearsurvival at 74% and five year survival at55%.

The NHS Bowel Cancer ScreeningProgramme was launched in 2006 with theaim to improve the earlier detection ofcancers and reduce bowel cancer deaths by16 per cent. To date, around 12 million testkits have been issued and over 11,000cancers have been detected. Whilst goodnews for patients this has placed additionalpressures on specialist teams.

The hypothesis for testing stratifiedpathways of care in colorectal cancersuggested that after 18 months of followup 40% of patients would be suitable for asupported self-managed pathway, a further30% would require a traditional follow upregime of face to face consultations andthe remaining 30% were believed to becomplex patients with multifunctionalneeds requiring more frequent or specialistmanagement and support. It was alsosuggested that there would be a 10%reduction in unplanned admissions. Note:Patients with anal cancers were notincluded in this testing work.

The revised follow up guidance issued byNICE in November 201113 for those aftercurative resection recommends:

• Starting follow up at a clinic visit four to six weeks after potentially curative treatment.

• Offer patients regular surveillance with:• minimum two CTs of the chest, abdomen, and pelvis in the first three years;

• serumcarcinoembryonic antigen tests (at least every six months in the first three years); and

• colonoscopy at one year after initial treatment. If normal consider again at five years, and thereafter as determinedby cancer networks. The timing of surveillance for patients with subsequent adenomas should be determined by the risk status of the adenoma.

• Reinvestigate if there is any clinical, radiological or biochemical suspicion of recurrent disease.

The concept of self-management andremote surveillance is not unknown withinthe field of colorectal cancer and someunits such as in Mid Essex are known tohave been using this model of care formany years. Some refer to it as an ‘openaccess’ services with test results sent bypost. Others run telephone or ‘virtual’clinics.

13Nice Clinical Guideline 131 Colorectal Cancer – the diagnosis and management of colorectal cancer - p18 www.nice.org/cg131


54

2. Teams profiles and baseline positionThree teams were selected to test theprinciples of stratified pathways of careand support packages for colorectal cancerpatients. The teams from Guys and StThomas (GSTT) and North Bristol NHSTrusts (NBT) were appointed in November2011. Salford Royal Hospital FoundationTrust (SRH) joined the programme inAugust 2011.

Steering groups involving key stakeholdersand patient representatives wereestablished within each team and thefollowing baseline information collected:

• Current patient pathway and follow up test regimes.

• Number of new colorectal cancer diagnosis per year.

• Number of unplanned colorectal cancer admissions per year.

• Provision of support services.

During the summer of 2011, Ipsos MORIundertook a quantitative baseline patientexperience and outcome survey for eachtumour type.

Guys and StThomas’ (GSTT)

North Bristol(NBT)

Salford Royal(SRH)

Newcolorectal referrals p.a

200

340

130

Follow up attendanceover five years

9 OPACNS led

9 OPACNS led

12 OPA CNS led

Comments

Specialist centrefor anal cancer

Hepaticreferral centre

Kings College

United Hospitalsof Bristol

ManchesterRoyal Infirmary

A 12 page postal questionnaire was sent tocolorectal cancer patients from two of thetest sites who were between six monthsand two years after completion oftreatment. A total of 229 completedquestionnaires were returned representinga response rate of 63%.

Responses suggest the main problems forcolorectal cancer patients were:

• Bowel and urinary problems. • Erectile dysfunction and sex issues. • Information on the signs and symptoms of recurrence.

Work programmes in each test site focusedon the following areas:

• Risk stratification – criteria and process• Holistic needs assessment, written care plans and treatment summaries

• Education and Information• Support services• Remote monitoring solutions for managing pathology and radiological investigations.


55

3. 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.

Supported selfmanagementpathway(green)

Disease

Dukes A, B, C

T1 - 3

N0 -2

Unstable CEA

T4

Trial patients

N1N2

Dukes D

M1

Liver metastases

High score EMVIpatients

Treatment or effects of treatment

Curative intent

After closure oftemporary stoma

After completion ofadjuvant therapy

Palliative intent

Post op bowel orurological dysfunction

Temporary stoma inplace

Poor symptom control

Post hepatic surgery

Severe side effects oftreatment

On active treatment

Individual

Good understandingof care pathway

Good general fitness

Willingness to selfmanage

High anxiety scores(>5 on DT score)

Poor compliance

Social isolation

Significant co-morbidity

Multiagency support

Trust

Clinicallysupervised pathway(amber)

Complex carepathway (red)


56

The proposal for a patient to transfer to aself-managed pathway rests with themultidisciplinary team. Clearlycircumstances will differ and it will alwaysbe a joint decision between the patient andthe team as to which pathway is the rightone for the individual. At Guys and StThomas the decision on the most suitablepathway has been devolved to the CNS.

Those that are selected for the self-managed pathway are generally managedby the CNS team with roles andresponsibilities clearly defined within astandard operating procedure.

In Bristol, follow up and reporting onsurveillance tests by telephone has beenoffered to patients since December 2010

and it is envisaged that over 50% of thoseon the current telephone follow up willtransfer to remote monitoring over thenext year as the system starts to embed. Testing has identified that as long asremote surveillance systems are robust, thepatient informed and they know who tocontact if they have a problem, there is noneed to wait 18 months before offering asupported self-managed pathway.

Data has been collected from each test siteon patients attending follow up clinics andthe pathway they would be suited to (onthe basis that remote monitoring was fullyavailable). The results are shown below.

Guys and StThomas

Salford Royal

North Bristol

Total

Green -Supported self-managementpathway

Amber -Professionally ledpathway

Complex pathway -Specialist led

Trust

No:

71

76

87

234

% of total

69%*

31%

53%

46%

No:

20

158

69

247

% of total

19%

64%

42%

48%

No:

12

13

7

32

% of total

12%

5%

4%

6%

* This relates only to patients seen by the CNS in their follow up clinics rather than follow ups as a whole.


57

Data was collected from each site on thepathway choice for each patient and theprospective slots that could be released.The period of data collected differed fromsite to site but of the 513 colorectal cancerfollow up patients recorded across thethree sites 46% were identified as suitablefor self-management. If all these patientswere enrolled onto the self-managementpathway over 900 prospective outpatientappointments would be released over fiveyears. This is simply an indication of thepotential – it should be noted that some ofpatients may have been suitable for self-management sooner in their follow uppathway and others placed on the self-managed pathway will relapse and mayneed to return to face to face follow up.

Savings resulting from releasing outpatientsslots need to be off set against the cost ofremotely monitoring the patient, educationof 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.

Holistic needs assessment (HNAs),care plans and treatment summaries Teams considered a variety of approaches,assessment tools and care plandocumentation and consulted on thesewithin their patient focus groups.

In all the test sites the CNS meets with thepatient at the time of diagnosis to discusstreatment options and assess any specificneeds prior to the start of treatment. Forsome, referral to clinical or support serviceswill be required at this stage. At NBTpatients are provided with a writteninformation sheet that describes the resultof tests, the diagnosis plus writtenconfirmation of next steps along withcontact details for the CNS. Depending ontheir needs other pre-printed information isalso made available at this stage. Self-assessment tools are not generally used atthis point though can be used if it isconsidered helpful in trying to prioritiseand address needs.

Self-assessment tools tend to be used aspart of the post treatment assessment andreview care plan discussion. Two Trustsopted to use a ‘Concerns Checklist’ (theGSTT team adapted the design andwording to suit colorectal patients) and theother used the SPARC tool. All have foundthat using a self-assessment tool hashelped identify needs that ordinarily wouldnot have been raised during a consultation.


58

At NBT, the care plan is recorded on thereverse of the Distress Thermometer and inaddition a copy of the planned testschedule and key dates. At GSST acombined care plan and treatmentsummary has been developed that recordsthe outcome of the discussion, any furtherreferrals made, signs and symptoms to bemade aware of as well as the planned testschedule over the next few years.

All the CNS teams found difficultyidentifying time within current job plans toundertake a health needs assessment atthe time of treatment. At Guys and StThomas undertaking a health needsassessment during existing nurse led clinics(that ran in parallel to consultant clinics)was not successful and a separate clinic hassince been set up where patients who haverecently completed treatment are nowseen. All sites suggest that about 40 -45minutes should be allowed for theseappointments at about six weeks followingcompletion of treatment. Electronicversions of the care plan with prefilled dataset information help reduce the timerequired to complete the care plan.

All three teams plan to install either thetreatment summary or a combinedtreatment summary and care plan aselectronic templates on their informationsystems. Guys opted to combine the careplan and treatment summary into a singledocument as they were being completed atthe same time, by the same person andthere was much duplication of information.

Examples of documentation can be foundon the NHS Improvement websitewww.improvement.nhs.uk/cancer/survivorship/adult_survivorship_pathwayor by contacting the teams directly.

Education and InformationAll three teams have improved theeducation and information for patientswith the focus on topics identified as issuesfor patients following the Ipsos MORIsurvey.

In addition to HNAs, when one to oneadvice is provided for patients, all the siteshave introduced tumour specific‘Information’ or ‘Living well’ days aimed atconfidence building and optimising self-management. Groups ranged in size from12 at GSST to 32 at NBT and 50 in Salford.The Salford team opted to spread theinformation event over two half days oneweek apart. Take up depended on howpeople were invited to attend.

Since July 2011, patients at NBT areadvised that the ‘Living Well’ day replaces anormal clinic attendance and this hassignificantly improved take up.


59

Figure 7: North Bristol NHS Trust - Colorectal Living Well Days

908070605040302010

0Nov 09

Jan 10Mar 10

May 10Jul 10

Sep10Nov 10

Jan 11Mar 11

May 11Jul 11 Nov 11

Sep 11

Attended Invited

In North Bristol, a further self-managementcourse based on cognitive behaviouraltherapy principles is run by clinicalpsychologists and nurse specialists on onehalf day for five weeks and The PennyBrohn Centre provides furtheropportunities for support includingresidential weekend events and othercourses focusing on building confidence,coping strategies, complementary therapiesetc.

Patients evaluation questionnairesidentified that information day ‘events’would be best suited to those about fourmonths after the end of treatment.Feedback has been overwhelminglypositive and all sites plan to continue withevents three to four times per year.

“The living well programmeimproved my ability to move

forward and made aworthwhile change to

my life.”Patient

Common topics covered in events were:• Food and nutrition.• Physical activity.• Managing after effects, fatigue, bowel and continence issues.

• Self-checks on health, signs and symptoms to look out for.

• Emotional issues and managing anxiety.• Benefits and finance advice.• Patient stories.


60

All three colorectal teams provide a widerange of Macmillan leaflets, several relatingspecifically to bowel cancer. Beating BowelCancer have recently launched a ‘LivingWell’ booklet that will also be madeavailable for patients.

The three test site teams have alsoparticipated in developing a range of‘frequently asked questions’ that have nowbeen launched as video clips on theBeating Bowel Cancer website.

Unplanned admissionsNo data was collected on unplannedadmissions during the test period.

Support servicesA wide range of support services havebeen identified to support colorectalpatients. The following support services arethe ones most often of help to colorectalcancer patients.

• Diet and nutritional advice.• Psychological support.• Erectile dysfunction and sexual issues.• Physical activity – physiotherapy, local authority schemes or community led.

• Benefits and finance advice.• Support groups.

Remote monitoringThe self-management pathway isdependent upon a safe reliable system ofscheduling and monitoring test results. Forcolorectal this is for CEA blood tests, CTscans and colonoscopy.

NBT have recently implemented theirremote monitoring solution for colorectalcancer patients. The system interfaces withthe Trust cancer information system,pathology and radiology systems to providethe CNS with the patient status and testresults in one location. Suitable patients are‘enrolled’ and baseline details includingdiagnosis, treatment and test due dates areentered. The system alerts the CNS whenresults require review and when due dateshave been exceeded.

Salford and GSTT team have developed inhouse solutions within existing IT systemsand both are expected to ‘go live’ duringSpring/Summer 2012. Further evaluation ofthese systems will be undertaken in thefuture.


61

Figure 8: Stratified Pathway of Care - ColorectalRECURRENCE/SYMPTOMS/ABNORMAL TESTS

TELEPHONE LED

PRIMARY CARE LED

CONTINENCE/STOMA

PSYCHOLOGICAL



PHYSICALACTIVITY

REVIEWCARE PLAN


DIET & NUTRITION

ERECTILE DYSFUNCTION/SEXUALITY

LYMPHOEDEMA


INFORMATION DAYS



NEEDSASSESSMENT

WRITTENCARE PLAN




NEEDSASSESSMENT

TREATMENTSUMMARY





MDT MDT

TIMELY RE-ACCESS

REMOTE MONITORING

CONSULTANT LED








CURATIVETREATMENT

First line and/or subsequent

PALLIATIVETREATMENT

TREATMENTDECISION


STRATIFIED PATHWAY OF CARE: COLORECTAL

+

SUPPORTED SELF MANAGEMENTCEA, CT scans, colonoscopy per local protocol

Stratified Pathway of Care - ColorectalThe diagram below provides the revised pathway based on testing over the past year with thekey services required to support colorectal cancer patients.

LUNGVisit our website at: www.improvement.nhs.uk/cancer/survivorship

62

LUNG workstream


• 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.


63

1. Background and context - lung cancerLung cancer is the commonest cause ofcancer deaths in the UK causing 22% of allcancer deaths. Patients often present latein the course of their disease with around70% having advanced or incurable diseaseat presentation. Recent work15 has shownthat 38% patients are first diagnosedfollowing an emergency admission.

This group of patients are highlysymptomatic with significant health needsand frequently utilise out of hours care.

Two teams were selected to test theprinciples of stratified pathways of careand support packages for lung cancerpatients with the aim of improving thequality and efficiency of services provided.

The hypothesis for testing was that byintroducing risk stratified pathways of carefor lung cancer patients there would be:

• An improvement in the experience and patient reported outcomes of care.

• A reduction in outpatient attendances by 15%.

• A 10% reduction in unplanned admissions.

It was suggested that 15% of patients maybe suitable for a supported self-managedpathway, 65% would require a traditionalfollow up regime of face to faceconsultations and the remaining 25% werebelieved to be complex patients requiringmore frequent or specialist managementand support.

Four recent publications were consideredrelevant to this testing work.

Nice Guidance CG121 on Lung Cancer16

(April 2011) made the followingrecommendations regarding follow upmanagement:

• All patients should be offered a specialist follow up appointment within six weeks of completing treatment to discuss on-going care. They should be offered regular appointments thereafter, rather than relying on patients requesting appointments when they experience symptoms.

• Offer protocol-driven follow up led by a lung cancer clinical nurse specialist as an option for patients with a life expectancy of more than three months.

• Ensure that patients know how to contact the lung cancer clinical nurse specialist.

15National Cancer Intelligence Network – Routes to Diagnosis - www.ncin.org.uk/publications/data_briefings/routes_to_diagnosis.aspx16The diagnosis and treatment of Lung Cancer – Update of NICE Clinical Guideline 24 (Issued April 2011)


64

(The NICE Quality Standards for LungCancer are due to be published in lateMarch 2012).

Two other publications have been relevantto the work over the past year for thosenot considered suitable for activetreatment:

• Access to palliative care - A study in the USA17 by Dr Jennifer Temel et al examined the effect of introducing palliative care early after diagnosis found that those referred early had a better quality of life than those assigned to standard care. Fewer patients in the palliative care group experience depressive symptoms and median survival was increased.

• Managing cachexia - An article published in Lancet Oncology18 in April 2011 by Andrew Wilcock et al recognisedthat weight loss in cancer patients is rarely recognised, assessed or actively managed and that interventions to reduce or delay its effect can be implemented sooner in the pathway.

2. Team profile and baselinesTwo lung teams were selected (see tablebelow) in Hull and Brighton to test thepotential of introducing stratified pathwaysof care within lung cancer. Both teams hadparticipated in earlier testing of assessmentand care planning and treatmentsummaries.

17Early 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.

18Definition and classification of cancer cachexia – an international consensus. Lancet Oncol 2011;12 489-95

Brighton

Hull

New lungdiagnosisp.a

250

500

Follow up model(mainly)

Consultant led

Consultant led

Surgicalreferrals

Referred toGuys and St Thomas’

Treated on site

No: sites wherelung cancerservices aredelivered

2

1


65

Hull aims:• To further develop nurse led clinics for patients completing treatment.

• To use the Sheffield Profile for Assessment and Referral for Care (SPARC)assessment tool to identify needs and develop care plans.

• To test the degree to which risk stratified pathways can be applied in lung cancer.

• To test the treatment summary.• To consolidate initial investigation into a smaller number of consultant respiratory clinics.

The team had previously established nurseled holistic care assessment clinics. Followup is mostly consultant led (oncologists,respiratory or cardiothoracic). The clinicaloncologist within the team encouragessuitable patients to self-manage and self-refer whenever they have a problem.

Brighton aims:• To establish a cancer clinic with a flexible appointment system enabling patients to be seen urgently when needed.

• To test a pre-clinic telephone assessment to reduce unnecessary follow ups.

• To test the use of a risk-stratification model to predict the ability to identify early on in a patient’s care pathway whatform of aftercare will suit their needs.

• To test whether a Health and Wellbeing Clinic is desirable and useful for lung cancer patients.

The team had previously streamlined thereferral service to ensure that all two weekwait and other lung cancer patients areseen in a joint clinic with appropriateclinicians and specialist nurses. Use ofHNA’s, care plans and treatmentsummaries were already embedded inpractice.

Patient experience dataIt was agreed that lung cancer patientswould not be asked to participate in thesame Ipsos MORI experience and outcomesof care survey undertaken within othertumour groups and an alternativeapproach was agreed.

A separate parallel project led by the NCSIproject manager was established to:

• Identify the extent of multi professional support currently provided for lung cancer patients.

• To collect self-reported quality of survival information from patients.

• To identify key components or patterns ofcare that enhances the duration and quality of care and survival.

• To provide baseline measures on which tobase future service improvement programmes.

Data collection is still on-going within bothtest sites and the final report from thisstudy of 200 patients is expected June2012.


66

3. Actions and outcomesRisk stratificationThe lung cancer team in Brighton collecteddata retrospectively on patients diagnosedwith non-small cell carcinoma between01/03/2010 – 28/02/2011. By scoring forcertain criteria at initial presentation (seestratifying criteria), the aim was to see ifthe future pathway required by the patientto best meet their needs could bepredicted in advance.

Data was collected on the following toestablish the level of care the patientrequired and a score assigned to eachcriterion met (i.e. self-managing/supportedcare/complex care):

• Number of telephone calls to CNS between clinic appointments.

• Number of unscheduled admissions to hospital.

• Routine follow up appointments < 2 months apart.

• Number of patient-triggered appointments required.

• Number of professionally-triggered appointments (outside of routine follow up).

• Number of times discussed at MDT (after diagnosis made).

Stratifying criteria were:• High Distress Thermometer Score (>6/10 at presentation).

• Inadequate Social Support System (as identified by patient/carer or clinician).

• Advanced Stage of Disease at presentation (stage IIIB/IV).

• More than two co-morbidities or severe COPD (FEV1 <50% predicted)

• PS 3/4 at presentation.• One or more of the following at presentation: - pleural effusion, spinal metastases, endobronchial occlusion, cerebral metastases, chest wall invasion, SVCO, hypercalcaemia, long bone fracture, SIADH.

• Hypoxia (Oxygen Dependence).• Step 3 on WHO analgesic ladder• Carers’ impression of patients’ ability to cope is poor.

• BMI < 20, >10% Body Loss at presentation.

Work is on-going to assess the value of theabove system at targeting moreintelligently whom may benefit fromintensive outpatient follow up to preventadmission to hospital. Early data suggeststhat the presence of severe COPD,advanced disease (stage IIIB/IV atpresentation) and high distress scores maybe reliable indicators of the need forincreased support. Need for oxygen, opiateanalgesia and poor performance statusappear less reliable in early analysis.


67

The team also collected data on thenumber of routine, patient or professionallytriggered appointments and cancellationsthat were required in the flexible clinicthroughout 2010 and 2011.

Professionally triggered appointments wererequested mainly by GPs or communityMacmillan teams/district nurses. In somecases it was via another source. Patientstriggered a rapid access appointmentdirectly via the hospital Macmillan CNSs orrespiratory secretaries.

Cancelled appointments were facilitated bya pre-clinic telephone call the week before.Patients identified as suitable for a pre-clinic call were those not currently receivingactive treatment, under routine surveillancefor occurrence of new symptoms that mayrequire palliation or active anti-cancertreatment and who wanted to remainunder secondary care follow up. Wherepatients were not receiving activetreatment 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.

The Hull team looked at the pathway for275 new lung cancer referrals betweenApril 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 manydeteriorated rapidly and the managementplan changed to one of palliative and bestsupportive care.

Those that completed treatment were seenwithin the nurse led clinic where a HNAwas undertaken and a care plan generated.The team identified that of the 63 thepatients seen in this nurse led clinic:

• 21 (33%) were considered suitable for referral to community palliative care teams or primary care management (green pathway).

• 39 (62%) required on-going hospital care(amber pathway).

• 3 (5%) required on-going intensive specialist support (red pathway).

Note: No patient was ‘discharged’. Allrequired robust handover to communityteams and clear transfer of immediate careto the community team. Most patientswere followed up by district nurses orMacmillan palliative care team.


68

The following pragmatic criteria weredeveloped to support a transfer ofimmediate care responsibility to thecommunity teams:

Holistic needs assessment (HNAs), care plans and treatment summariesIn Brighton, the Distress Thermometer isused by the team at follow up attendancesto identify issues of concern to the patientwith all scores recorded and monitored.The first HNA is undertaken with the lungCNS at the same time (or very soon after)diagnosis is confirmed and a care plan iscompleted.

In Hull the CNS aims to complete an HNAusing the Distress Thermometer within 4weeks of diagnosis and 4-6 weeks aftercompletion of treatment. The team initiallyused the SPARC documentation but inSeptember 2011 also started to using theDistress Thermometer. Feedback frompatients has been extremely positive,particularly on the benefits of referral tosupport services such as the breathlessnessclinic.

Essential criteria

• Completion of holistic needs assessment by the CNS

• Sufficient home support• Optimum symptom control• Access to a telephone• GP/DN/Community Macmillan Team involvement

Desirable criteria

• No sensory impairment• Adequate literacy level• Geography (distance from site and access to transport)

In Brighton, an electronic version of thetreatment summary is generated by theconsultant at each clinic visit and sent tothe GP and patient within 48 hours of theappointment (see website for example).The Hull team has also introduced the useof treatment summaries and these are inroutine practice across the whole team.

Education and informationThe Brighton team identified that manynew patients present with weight loss andshortness of breath and many haveconcerns about personal finances inrelation to their diagnosis. It was felt thataddressing these issues early could have apositive impact on the patients’ ability tocope with side effects of their disease andtreatment and help promote self-confidence.


69

Consideration was given to holding groupinformation days however the rapidlychanging nature of the disease suggested amore individual approach would be moreappropriate.

A fortnightly health and wellbeing clinic(HWBC) was established in July 2011attended by the physiotherapist, dieticianand Citizens Advice Bureau (CAB). Referralswere triaged by the CNS as part of theinitial holistic needs assessment.

Key findings from HWBC:• Early access to these services was positively received by patients.

• A projected £111,122 per annum in benefits were identified for 16 patients seen by the CAB advisor that would otherwise have probably been unclaimed.

• Rapid access to physiotherapy should be available to all lung cancer patients at any point in their pathway.

• Access to psychologist/counsellor is required for some but is not suitable for health and wellbeing clinic environment.

• One stop clinics seeing more than one professional can be very exhausting for lung cancer patients.

• Closer links with allied health professionals and the CAB has enhanced the whole team approach to supporting lung cancer patients and their families.

The introduction of nurse led pre clinictelephone calls in Brighton has led to thecancellation and rearrangement of 25%scheduled appointment slots as they werenot needed by patients at that time. Thisprovided capacity to accommodate urgentappointments for those that need them.

During 2011, 13 patients self-referred tothe clinic and a further 44 urgentappointments were triggered byprofessionals. There is no doubt that theavailability of these urgent slots helpedavoid a number of emergency admissions.

RoutineProfessionalSelfCancelledDNATOTAL

2010

17545209233365

%

47.912.35.525.29.0

2011

18044137218327

%

55.013.54.022.05.5

In Hull, a similar flexible approach toappointments exists with patients added toor removed from planned clinics by theCNS or secretaries as needs change.


70

Unplanned admissionsBoth the Hull and Brighton, teams haverecorded reductions in unplannedadmissions.

In Hull, there were 34 fewer unplannedadmissions with diagnosis of lung cancerover eight months in 2011 versus 2010representing a 6% reduction overall.

Figure 9: Hull - Unplanned admissions with diagnosisof lung cancer

100

80

60

40

20

0May Jun Jul Aug Sep Oct Nov Dec

2010 2011


71

In Brighton, at the Royal Sussex CountyHospitals (RSCH) during 2011, there wasan 8% reduction in the number ofunplanned admissions for those with aknown diagnosis of lung cancer comparedto 2010. Since the introduction of thehealth and wellbeing clinic in July 2011unplanned admissions show an 18%reduction on the same period in theprevious year suggesting that earlyintervention around physiotherapy andbreathlessness, diet and nutrition may alsohave had an impact on unplannedadmissions.

Figure 10: Brighton - Unplanned admissions with a knowndiagnosis of lung cancer

12

10

8

6

4

2

0Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec

2010 2011

It is also worth noting that at RSCH theaverage length of stay has reduced from 11to 9 days between 2009 and 2011 and theoccupied bed days has fallen by 40% from1065 in 2009 to 634 in 2011. Comparativedata collected at Princess Royal Hospital forlung cancer admissions where few servicechanges have been introduced show anincrease in the number admitted with aknown diagnosis of lung cancer and anincrease in length of stay (8 to 12 days)and consequent bed days.


72

Clinical and other support servicesData has been collected on the range ofsupport services required to support lungcancer patients. The support servicesrecorded for each site were:

Referral services

Dietician

Benefits and finance

Physiotherapy/breathlessness

Community Macmillan team

District nurse

Social care

Legal welfare rights

Disabled badge

GP/practice nurse

Vocational rehabilitation

Psychologist

Complementary therapies

Occupational therapy

Hull (based on 93 patientsseen in general clinic ornurse led)

5

24

13

33

25

9

8

21

3

-

-

-

-

Brighton (basedon 81 patients)

31

22

19

16

5

3

-

-

5

1

1

1

1

Whilst the proportions differ there iscommonality across both teams for themain types of support services required forlung cancer patients. It is not fullyunderstood why the level of referralsdiffered so much between the two siteshowever issues such as local serviceconfiguration, access waiting times orsimply how referral data was collectedcould be factors.

Referrals to psychologists appear low fromboth teams. This is not necessarily becausepatients have no psychological needs butthat support is either met through theprofessionals within the lung team orpatients self-refer to the service. In thereception area of the Hull Oncology Centrea well resourced unit is staffed bypsychologists and volunteers and providesopen access to patients and visitors.


73

Figure 11: Stratified Pathway of Care - Lung

HOSPICE LED

NUTRITIONALCLINICALSUPPORTSERVICES


REVIEWCARE PLAN

DISTRICT NURSING

COPING/PSYCHOLOGICAL

HOME OXYGEN SERVICES



NEEDSASSESSMENT

WRITTENCARE PLAN




NEEDSASSESSMENT

TREATMENTSUMMARY



PROFESSIONAL LED

END OF LIFE CARE

MDT

CLINICAL NURSE SPECIALIST LED

TELEPHONE LED



LEGAL ADVICE



CURATIVE TREATMENT

PALLIATIVE TREATMENT

SUPPORTIVE CARE

TREATMENTDECISION

STRATIFIED PATHWAY OF CARE: LUNG

+

SPECIALIST PALLIATIVE CARE LED

CONSULTANT LED (RESPIRATORY,ONCOLOGY, THORACIC)

PRIMARY CARE/COMMUNITYPALLIATIVE CARE LED

OCCUPATIONAL THERAPY/WHEELCHAIR SERVICES

PHYSIOTHERAPY/BREATHLESSNESS CLINICS

RECURRENCE/SYMPTOMS

Stratified Pathway of Care - LungThe diagram below provides the revised pathway based on testing over the past year with thekey services required to support lung cancer patients.

PROSTATEVisit our website at: www.improvement.nhs.uk/cancer/survivorship

74

PROSTATE workstream


• 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 andProstate 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.

EVisit our website at: www.improvement.nhs.uk/cancer/survivorship

75

1. Background and context - prostate cancerProstate cancer is the most common cancerin men in the UK with around 38,000 newcases diagnosed every year. The incidenceis rapidly increasing partly due to the agingpopulation and the use of PSA testing.

The treatment decision can be complex forboth the clinician and the patient and cantake time to decide and factors such as thestage, spread, patient age, comorbiditiesand personal wishes all having an impacton the decision that is made.

A consensus meeting of professionals andpatients was held in summer 2010 todiscuss different levels of care for prostatecancer patients using a three level modeland this has been tested during this phaseof the programme.

It was suggested at the consensus meetingthat 40% of patients had the potential togo onto a self-managed pathway, 25%would require planned coordinated careand 35% would require complex casemanagement. The following enablers wereconsidered key to the self-managementpathway.

• Robustly structured monitoring system toenable self-care.

• Information, education and advice to support self-management.

• Resolution of acute symptoms associated with the disease or treatment.

The hypothesis for testing suggested thatby introducing risk stratified pathways ofcare for prostate cancer patients therewould be:

• An improvement in the experience and patient reported outcomes of care.

• A reduction on outpatient attendances by 40%.

• Contribute to a 10% reduction in unplanned admissions.

NICE guidance on prostate cancer19

highlighted the following in regard tofollow up:

• Healthcare professionals should discuss the purpose, duration, frequency and location of follow up with each man withlocalised prostate cancer, and if he wishes, his partner or carers.

• Men with prostate cancer should be clearly advised about potential longer term adverse effects and when and how to report them.

• Men with prostate cancer who have chosen a watchful waiting regimen with no curative intent should normally be followed up in primary care in accordance with protocols agreed by the local urological cancer MDT and the relevant primary care organisation(s). Their PSA should be measured at least once a year.

15National Cancer Intelligence Network – Routes to Diagnosis - www.ncin.org.uk/publications/data_briefings/routes_to_diagnosis.aspx16The diagnosis and treatment of Lung Cancer – Update of NICE Clinical Guideline 24 (Issued April 2011)


76

• PSA levels for all men with prostate cancer who are having radical treatment should be checked at the earliest six weeks following treatment, at least everysix months for the first two years and then at least once a year thereafter.

• Routine digital rectal examination (DRE) isnot recommended in men with prostate cancer while the PSA remains at baseline levels.

• After at least two years, men with a stable PSA and who have had no significant treatment complications, should be offered follow up outside hospital by telephone or secure electroniccommunications, unless they are taking part in a clinical trial that requires more formal clinic-based follow up.

• Direct access to the urological cancer MDT should be offered and explained.

2. Team profiles and baseline positionFour clinical teams from Ipswich HospitalNHS Trust, Hillingdon Hospital NHSFoundation Trust, Luton and DunstableHospitals NHS Foundation Trust and NorthBristol NHS Trust were invited to test theprinciples of stratified pathways of careand support packages for patientsfollowing initial treatment for prostatecancer.

Baseline information was obtained fromthe sites and included current pathway,number of new prostate cancer a year,number of unplanned admissions for thosewith prostate cancer in a year and provisionof support services. It is interesting to notethat from our four sites, only one sitecarried out the radical surgery with theother three sites sending their patients toregional centres. This was seen to add alayer of complexity where specialist treatingcentres held onto patients for follow uprather than referring back to their localDGH. This increases the potential to ‘lose’patients and work is needed to ensure thatpatients following their specialist treatmentare referred back to their local hospital forfollow up management.

As with the other tumour types, IpsosMORI was commissioned to undertake apostal survey to ascertain the experienceand reported outcomes for patientsfollowing initial treatment for prostatecancer. Completed questionnaires werereturned by 483 respondents giving aresponse rate of 64%. A report of findingsis available.

The main issues raised by prostate cancerpatients were:• Lack of information regarding signs and symptoms of recurrence

• Sexual and erectile dysfunction issues


77

• Needs assessment with written care plan and treatment and management plan summary

• Information, education and advice• Signposting to non-clinical support services.

Ipswich

Hillingdon

Luton andDunstable

North Bristol

New prostate cancer p.a.

250

285

180

400

Follow upattendancesover 5 years

10

10

8

10

Comments

Consultant led service. PSAmonitoring usually for life withfollow up either in a hospital orprimary care setting. Cambridge andNorwich provide specialist surgicalservice.

Consultant led service. PSAmonitoring usually for life withfollow up either in a hospital orprimary care setting. Surgeryprovided at NW London andoncology services at Mount Vernon.

Consultant led service. PSAmonitoring usually for life withfollow up either in a hospital orprimary care setting. Specialistsurgery performed at Lister Hospital.

Consultant led service. PSAmonitoring usually for life withfollow up either in a hospital orprimary care setting. Oncologyservices at Bristol Oncology Service

Trust

Project team work plansIn general the work of the project teamsfocussed on five key areas:

• Risk stratification- criteria and process• Remote monitoring solution to support self-management


78

1. Actions and outcomesRiskstratificationThe riskstratificationcriteria weredeveloped andtested as outlined in thefollowing table.


79

Initially the teams tested three pathways(complex, shared or self-managed)however after testing the ‘shared care’pathway was removed as it was foundconfusing and the feeling was patientscould either self-manage with support orthey needed a pathway which wasprofessionally led. The criteria for complexand shared pathways were thereforemerged (now blue columns) for specialistled follow up with the remaining criteriaapplicable to those suitable for supportedself-management.

The testing work, based on the limiteddata available, found that the percentagethat could be stratified to self-managementpathway averaged about 30%. Difficultieswere encountered in collecting continuousdata (with the exception of North Bristol)so several sites opted to conduct asnapshot audit during November 2011 toascertain the proportions. Some patientswere found to be suitable for self-management six months from start ofinitial treatment however for the majority aself-managed pathway was selected ataround two years.

In Luton, the stratification decision is firstconsidered one year after initial treatmentfor those patients who have stable disease.The consultants identified that 29% ofpatients were suitable for self-managementat this point.

In Ipswich, a snapshot of follow upattendances was undertaken duringNovember 2011 which highlighted that26% of patients could be stratified to self-management pathway and this was mainlyat the two year point after diagnosis. It wasnoted that several ‘well’ patient remainedin specialist led follow up as they were onclinical trials.

In North Bristol, where the remotemonitoring system is furthest ahead, thenumbers stratified to self-management was44%, with an additional 36% followed upas telephone follow ups by the CNS. Thisleft 20% on a complex care pathway.

In Hillingdon 33% of patients in theNovember 2011 snapshot were stratified toa self-management pathway.

The potential saving in outpatient slots inthese test sites would be over 2,500 slotsover three years equating to gross savingsof £250, 000 at the current PbR tariff forurology. The savings do of course need tobe netted off against the costs ofmanaging patients remotely.


80

Holistic needs assessment (HNSa), careplans and treatment summariesIn all but one of the test sites, there wasonly one prostate cancer specialist nurse(CNS) and when you look at the number ofclinics the CNS needs to cover within anorganisation you can see why somepatients do not have the benefit of CNSinput at key points in their cancer journey.

In Luton, CNS resource constraints meantthey could only undertake a structuredHNA for those stratified to a self-management pathway. Whilst of benefit tosome, others would have preferred to havehad the discussion sooner to allow timelierreferral to support services. It was notedthat the CNS is always available forpatients during joint clinic session or byphone should patients have issues orspecific needs they wish to discuss. Thetool used to guide the assessmentconversation was the PEPSI-COLA aidmemoir. The CNS currently has one sessiona week to undertake assessments andthere are five slots on each clinic. Workcontinues within the Trust to review thesuitability of assessment tools and tostreamline the care plan and treatmentsummary format. The recent appointmentof a second CNS should help progress this.

In Ipswich, there were issues with time totest care planning and treatment records.Both the surgical CNS and the radiotherapyspecialist planned to undertake holisticneeds assessments however this was onlypossible with the specialist radiographerwho completed 11 care plans over the lifeof the project. The care plan and treatmentsummary were combined as a singledocument. Lack of time and increasingworkload prevented the surgical CNS fromcompleting assessments personally.However, several patients were referred tothe CNS within the Cancer InformationCentre who was able to complete a furthernine assessments on her behalf. For thenurse led assessments the care plan andtreatment summary were kept as separatedocuments due to the complex needs ofthe patients and because the urology CNSfelt the treatment summary should becompleted by the consultant.

In Hillingdon, the prostate CNS used theDistress Thermometer as the preferredassessment tool, however feedbackreceived from patients led to a change inthe title ol to a ‘Concerns checklist’. Use ofthis tool did identify the need for improvedsupport around continence and erectilefunction problems.


81

North 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 inmotivational interviewing to support thechange in nature of the conversation andmove patients from passive recipients toactive managers of their own health.

“For those who attend the‘Living Well Cognitive

Behavioural Therapy’ course,an individual care plan is

negotiated towards the end ofthe course. Initially, theassessment and patient

conversation took about 45minutes, though with

experience the time requiredhas reduced.”

Healthcare Professional


82

Information and educationSeveral of the sites had either informationdays or health and wellbeing clinics whichare part facilitated by volunteers. The dayshave been well evaluated for their contentand guiding individuals on the road to self-management, in the knowledge that ifthey run into problems they know where togo for support.

In Luton, patients are provided with TheProstate Cancer UK booklet ‘Living withand after prostate cancer’ and Macmillan‘Move More’ exercise pack. Motivationalinterviewing training was provided toclinical professionals and the ‘Active Luton’staff. ‘Active Luton’ offers easy access toexercise assessment and goal planning. Thereason given was limited interest in holdingtumour specific information days thoughthis is being explored as a network wideoption.

Hillingdon held a very successful health andwellbeing information day where patientscould access information on the self-management, with ‘market stalls’ to accessadvice information and support fromMacmillan, The Prostate Cancer Charityand local organisations. The first event wasattended by 65% of those invited. Ipswich provides both information daysand an educational ‘Moving On’ course.

The events are not tumour specific andinclude all types of cancer patients. Theinformation days have proved popular forthose reluctant to undertake the ‘MovingOn’ course. However some of thoseattending the information day went on toattend the ‘Moving On’ course.

North Bristol offers ‘Living Well’ day thatruns three times per year to captureprostate cancer patients following theirinitial treatment.

“We are leaving the seminarfeeling very confident that wewill not drop off the radar in

the future.”Patient

“This has given me moreconfidence to deal with theday to day challenges that

arise.”Patient


83

Support servicesDue to difficulties in obtaining informationon referrals on signposting throughout theproject, a decision was taken to do a onemonth snapshot (November 2011) thatwould hopefully be representative of othermonths.

In Ipswich, for example, 59 patients werereferred or signposted to the servicesshown in the chart below (figure 12).

There is no data source that capturesroutinely this aspect of care and althoughwe were able to do this snapshot, we wereunable to determine the actual take uprate of referrals.

Figure 12: Referrals to clinical and support services -Prostate Cancer Patients - November 2011

9876543210

Mo

vin

g O

nPr

og

ram

me

Psyc

ho

sexu

alA

dvi

sor

Erec

tile

Dys

fun

ctio

n

Co

mm

un

ity

Palli

ativ

e C

are

Ben

efit

s an

dFi

nan

ce

Co

un

sello

r

Co

mm

un

ity

Ther

apie

s

Co

nti

nen

ceA

dvi

sor

Occ

up

atio

nal

Ther

apy

Tru

stPa

lliat

ive

Car

e

Die

tici

an

Dis

tric

tN

urs

e

Soci

alC

are

Phys

ical

Act

ivit

y


84

Remote monitoringThe concept of remote monitoring forprostate cancer is not new. For example, inthe Royal United Hospital Bath, a remotemonitoring system has been in place sincebeing a pilot site with the ModernisationAgency’s Action on Urology programme.

PSA testing is the key diagnostic test usedto indicate recurrence of prostate cancer. Inthe main it is performed annually but canbe done more frequently depending on theindividual circumstances and can continuefor life. For prostate cancer patientseffective PSA tracking is critical to reducingfollow up and promoting self-managedcare through remote monitoring. With theincreasing use of intermittent as opposedto continuous hormone therapy a remotemonitoring system would appear to offer amanagement solution though specialistoversight without the need to resort tofurther outpatient clinic attendances forthis group of patients.

The system NHS Improvement developedwith North Bristol is now being tested inother sites. Implementation of the systemhas been delayed due to trying to get itonto the IT departments agenda, and somesites having to complete business casesbefore it would be considered.

It is recognised that any savings resultingfrom releasing outpatients slots will needto be off set against the cost of remotelymonitoring the patient, and will probablyrequire following further testing andevidence of utility requiring a remotemonitoring tariff to embed it in practiceand ensure it continues to develop withtime.

“This system was locallydeveloped, but over time asthe numbers of patients has

increased the system isstruggling to cope.”

Healthcare Professional


85

Figure 13: Stratified Pathway of Care - ProstateRECURRENCE/SYMPTOMS/ABNORMAL TESTS

TELEPHONE LED

PRIMARY CARE LED

CONTINENCE

PSYCHOLOGICAL



PHYSICALACTIVITY

REVIEWCARE PLAN


DIET & NUTRITION

ERECTILE DYSFUNCTION/SEXUALITY

LYMPHOEDEMA


INFORMATION DAYS



HOLISTICNEEDS

ASSESSMENT

WRITTENCARE PLAN




HOLISTICNEEDS

ASSESSMENT

TREATMENTSUMMARY





MDT MDT

TIMELY RE-ACCESS

REMOTE MONITORING

CONSULTANT LED








RADICAL TREATMENT

ACTIVE SURVEILLANCE

HORMONE TREATMENT

WATCHFUL WAITING

OTHER MANAGEMENT

TREATMENTDECISION


STRATIFIED PATHWAY OF CARE: PROSTATE

+

SUPPORTED SELF MANAGEMENT+PSA Monitoring

Stratified Pathway of Care - ProstateThe diagram below provides the revised pathway based on testing over the past year with thekey services required to support prostate cancer patients.


86

Next steps: From innovation to adoptionWith the proof of principle established that risk stratified pathways areachievable in practice, there is now a need to ensure that the findings fromthe pilot testing are replicable to other clinical teams and across self-selectingdelivery organisations prior to National roll out. The tumour types included inthis prototyping phase are breast, colorectal and prostate, with a focus onthose patients in remission following treatment who are suitable for a self-managed pathway.

This prototype phase will include 27clinical teams within nine organisationsdelivering cancer services to theirpopulation. We have retained two of ourpilot sites to test the sustainability of thepathways and the experience of patientsover a greater timeframe. This experienceof care will be evaluated early 2013 andcompared to the baseline for our pilotand prototype sites.


87

The nine organisations that weresuccessful in their bid to receive nationalsupport in prototype testing the pathwaysare:

• Dorset County NHS Foundation Trust

• Ipswich Hospitals NHS Trust (pilot site for breast and prostate)

• North Bristol NHS Trust (pilot site forbreast, colorectal and prostate)

• North West London Hospitals NHS Trust

• Royal United Hospital Bath NHS Trust

• St Georges Healthcare NHS Trust• Imperial College Healthcare NHS Trust

• The Royal Marsden NHS Foundation Trust

• West Hertfordshire Hospitals NHS Trust

Each of the sites will be testing riskstratified pathways with clinical teamssupporting breast, colorectal and prostatepatients who are in remission followingtreatment for cancer.

We will continue to work with the majorproviders of cancer and other clinicalinformation systems to embed the remotemonitoring functionality within theirsystems.

Alongside this work we will be costingcare with the traditional model of followup in breast, colorectal and prostatecancer.

We will be working in partnership withNatCanSAT to analyse the HES data andour test sites to cost bundles of carearound the recovery and sustainingrecovery elements of the pathway forthose who have been treated withcurative intent, in remission and suitablefor a self-managed pathway of care. Therecovery element will be part of, orderived from, the acute tariff and thesustaining recovery tariff from the followup activity tariff.

If at the end of this current year thetransferability of the pathways lookspromising, we will begin a national rollout through cancer networks as a rollingprogramme over the next two years withthe three current cancer types (breast,colorectal and prostate). Initially this willbe through the networks that currentlyhave the resources to support the roll out,and are keen to work with us to take thiswork forward. At the same time we willbe looking to widen the breadth oftumours to include all urology cancersand some gynaecological cancers. We willuse the proof of principle established inthe pilot phase and prototype within thenew tumour areas. The focus will remainon those treated with curative intent andin remission as this group may be themost suitable for a self-managed pathwaythat includes remote monitoring of testsand PROM measures.


88

ConclusionThis testing has shown that the Adult Cancer Survivorship work continues tomake steady progress and that a significant step forward has been made indeveloping and implementing new models of aftercare services that bothimprove quality and experience for patients as well as improve the efficiencyand productivity of services.

New levers are starting to emerge tosupport wider adoption of survivorshipwork such as QIPP, CQUIN payments,specifications within the cancercommissioning toolkit, peer review andthis will help support the drive for changeand further adoption of good practice.

This is not easy work and requires vision,leadership, commitment anddetermination in order to inspire anddeliver such radical change in the currentclimate.

We are indebted to the work of all thetest sites teams, and those who havesupported them, and for the learning theyhave shared.


89


90

NHS Improvement3rd Floor | St John’s House | East Street | Leicester | LE1 6NBTelephone: 0116 222 5184 | Fax: 0116 222 5101

www.improvement.nhs.uk

NHS ImprovementNHS Improvement’s strength and expertise lies in practical service improvement. It has over adecade of experience in clinical patient pathway redesign in cancer, diagnostics, heart, lung andstroke and demonstrates some of the most leading edge improvement work in England whichsupports improved patient experience and outcomes.

Working closely with the Department of Health, trusts, clinical networks, other health sector

partners, professional bodies and charities, over the past year it has tested, implemented, sustained

and spread quantifiable improvements with over 250 sites across the country as well as providing

an improvement tool to over 2,000 GP practices.

Delivering tomorrow’simprovement agenda for the NHS

HEART

LUNG

CANCER

DIAGNOSTICS

STROKE

NHSNHS Improvement

Scan the QR codefor quick andeasy access tothe interactiveadultsurvivorshippathway

Follow us on:

©NHS Im

provem

ent 20

12 |All Righ

ts Reserved

Publication Re

f: NHSIMP/cancer00

4 - Septem

ber 20

12

Health & Medicine

Adult survivorship: from concept to innovation