Designing and implementing pathways to benefit patient aftercare: Continuing to build the evidence

HEART

LUNG

CANCER

DIAGNOSTICS

STROKE

NHSNHS Improvement

Children and young people living with and beyond cancer

Designing and implementing pathwaysto benefit patient aftercare:

Cancer

Continuing to build the evidence

This publication is the fifth in a series of National Cancer SurvivorshipInitiative (NCSI) Children and Young People publications (October 2011)

Background to the Children and Young People Workstream

Section 1Introduction and purpose of this publication

Section 2A summary of the overall evidence

Part 1• Children and young people aftercare pathways

Part 2• Models of care

Part 3• Entry into long term follow up• Clinical levels of care• Evidence-based risk stratification of survivors• Transition

Part 4• A summary of evidence from the children and young peopletesting and prototyping (October 2011)

• Health economic evaluation to support models of care• Patient experience• Nurse competence

Section 2The ten key principles and recommendations

Section 4Steps to spread and implementation

Section 5National Cancer Survivorship Initiative Children and YoungPeople Workstream - Expectations 2012-2015

Section 6Establishing and embedding the foundations: The key messages

Section 7Contacts

Section 8References

Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence 3

www.improvement.nhs.uk/cancer

Contents

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The National Cancer Survivorship Initiative (NCSI) evolvedfrom the Cancer Reform Strategy (2007). The NCSI waslaunched in September 2008 and is a partnershipbetween the Department of Health, Macmillan CancerSupport and NHS Improvement.

The Children and Young People (CYP) workstream is oneof seven workstreams conducting improvement work aspart of the NCSI. The aim of this national initiative is toimprove models of aftercare provided for those patientssurviving cancer, many of whom will need a range ofclinical and non-clinical services to enable each of themto live a happy, healthy normal life after their initialtreatment for cancer. The NCSI national steering groupprovides the links to other workstreams across theinitiative.

There are over 40,000 survivors of childhood cancer inthe UK with 60% of childhood cancer survivorsexperiencing at least one adverse late effect of cancertreatment. It has also been reported that 50% ofsurvivors of childhood cancer patients are ‘lost to followup’. The follow up for aftercare services for CYP cancersurvivors varies nationally but is predominately clinicianled at a Principal Treatment Centre (PTC). With theexponential increase in the number of young adultcancer survivors - strategies and a change in thephilosophy of a single model of care to a more holisticmodel is needed.

One of the key drivers for CYP follow up comes from TheNational Institute of Clinical Excellence (NICE) CYPImproving Outcomes Guidance (IOG). These guidelinesaddress the care of children and young people diagnosedwith cancer up to the age of 25 years. This spans thecare of children and young people across paediatric,adolescent, and adult health care services.

Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence4

The CYP workstream is made up of key stakeholdersnationally these include representatives from:

• Young People Cancer Survivors• Lead Cancer Clinicians• Cancer Networks• Cancer Charities including MacMillan UK,CLIC Sargent and Teenage Cancer Trust

• Primary Care• Department of Health

The CYP workstream has over the past 30 months testedand prototyped models of care within both clinical andnon-clinical services.

There are ten national test sites involved in the CYPworkstream. These test sites were the result ofsuccessful expressions of interest (in February 2009) fromnine cancer treatment centres and one cancer charity.

• The Leeds Teaching Hospitals NHS Trust• The Christie NHS Foundation Trust• Birmingham Children's Hospital NHSFoundation Trust

• Sheffield Teaching Hospitals NHS Foundation Trust• University Hospitals Bristol NHS Foundation Trust• The Royal Marsden NHS Foundation Trust (RMH)• Great Ormond Street Hospital for ChildrenNHS Trust (GOSH)

• Cambridge University Hospitals NHSFoundation Trust

• Royal Alexandra Children'sHospital (Brighton)

• CLIC Sargent


Background to the childrenand young people workstream


The following priorities for CYP survivors have beentested and prototyped:

• The development of survivorship pathways• Development of a treatment summary and care plan• Identifying and testing appropriate models ofaftercare:• Clinician led• Professionally led shared care includingsecondary and primary care

• Nurse led, including telephone and postalfollow up

• Supported self management• Developing a safe risk stratification framework andidentifying those patients at low, medium and highrisk as a consequence of late effects followingsurgery, chemotherapy and radiotherapy treatment.

• Non clinical support issues have been identified andaftercare models to support these issues have beentested. These include psychosocial support, andsupport for returning to education and employmentthrough a variety of practical resources: websites,survivorship education programmes, fertilityeducation and the importance of exercise

During the testing and prototyping work, and particularlyin building the ongoing evidence, the improvementundertaken took into account the Quality, Innovation,Productivity and Prevention (QIPP) agenda and theimportance of aligning, where possible, the evidencepresented to the key elements of QIPP.

This publication is a brief overview of the testing andprototyping evidence for the nine clinical test sitesnationally who have participated in this initiative.

The practical case studies documenting the improvementwork from the nine project sites will be published inMarch 2012 and examples of the work will be displayedas part of the market place on 12 October 2011 in orderto complement and launch this publication of evidence.

Further information and access to our earlier publicationscan be found on our website at:www.improvement.nhs.uk/cancer



It has been exciting and illuminating to work

cooperatively and cohesively with other

teams and with the close involvement of

patients, to develop a service that is

individualised and focussed on patients’ needs

and wishes rather than on what professionals

alone think is needed.”A health professional


“


Welcome to the fifth in a series of publications from theNCSI CYP workstream. These publications have chartedboth the progress and captured the improvement workand methodology in the form of practical case studies.

This publication draws together the evidence so far fromthe NHS teams testing the concepts of alternative modelsof aftercare for children and young people living withand beyond cancer and provides the initial evidence tohelp to support the commissioning of effective aftercareservices in the future.

The learning and experience from the testing andprototyping work, presented in this publication, providesthe tangible evidence of why such models of care shouldbe commissioned and adopted by teams locally acrossthe country.

However, this is ongoing work and from October 2011until the end of March 2012 the evidence will continueto be refined and presented at a national conference onthe 28 March 2012.

In section 2 of this publication, the initial findings havebeen included from a financial modelling exercise inorder to begin to understand the effects on anorganisation by implementing an alternative method ofaftercare. The financial evaluation and summary offindings from the prototyping sites have also beenprovided as part of the commissioned work undertakenby the York University Economics Health Consortium.This information provides a brief overview of the financialand productivity evidence focussing on an example of‘what is possible’. A final report from this initial workwill be presented by The York University team, at the 12October 2011 workshop in London.

Notes to the readerTo ensure that a succinct, robust summary of informationhas been provided, a number of commissioners fromacross the country were invited to critique and commenton the practicality of the evidence gathered so far fromtheir perspective. Their feedback has been invaluable andwe are extremely grateful for their time and expertise.Their comments, queries and thinking will provide a basisfor the ongoing work to refine the evidence and data byMarch 2012.

Finally, we hope you will find this publication informativeand useful as a summary of evidence from our NCSI CYPtest sites up to October 2011. Without the continuingcommitment of our patient cancer survivors, our clinicalleads and everyone supporting the testing and prototypeteams it would not have been possible to produce thispublication. We owe them huge thanks andappreciation for their commitment.


Introduction and purposeof this publication

SECTION ONE:

Professor Faith GibsonCo-chair of the NCSI CYPSteering Group

Dr Gill LevittCo-chair of the NCSI CYPSteering Group

Patricia MorrisNHS Improvement Director,Cancer

Judi TappNHS Improvement,National Improvement Lead



Testing phase involving the feasibility of alternative models of careinvolving 10 centres, treating children and young people with cancerand delivering after care services, from across the country

MARCH 2010

Four models of aftercare developed and articulated with supportingevidence of why they should be commissioned

SEPTEMBER 2010

Produced risk stratification evidence to support the clinical safetyand acceptability of the four models of care proposed

SEPTEMBER 2010

Defined three aftercare pathways for children and young peoplefollowing extensive consultation with patients, carers, healthprofessionals and national charities

SEPTEMBER 2010

Developed a prototype treatment summary and care plan for allpatients living with and beyond cancer to inform patients and healthprofessionals throughout their lives

SEPTEMBER 2010

Developed a set of quality indicators to inform the delivery ofaftercare services and drive up the quality of care deliveredconsistently across the country

OCTOBER 2010

Commissioned and extracted evidence from a financial modellingexercise undertaken by The York University Health EconomicsConsortium

OCTOBER 2010

Completed an interactive patient experience evaluation initiated toensure our proposals and recommendations are in line with patientand carer needs, expectations and individual concerns

OCTOBER 2010

Developed a set of recommendations for commissioners and otherhealth professionals to support, inform and influence the decision-making of specific aftercare models of care

OCTOBER 2010

Actively engaged, consulted and worked directly with a wide rangeof health professionals to ensure that the proposals andrecommendations will be clinically safe, appropriate, feasible andcost effective throughout this initiative

MARCH 2009 -OCTOBER 2010

Progress and outcomesProgress timeline and outcomes - March 2009 to October 2011


The survivorship programme helped me in many

ways. Primarily, it gave me a better understanding

of what help was available after having cancer, as

well as being able to use the folder as a handbook

to refer to short and long term. It also gave me

vital contacts to get in touch with which really

helped a lot and on the whole I think it’s a

brilliant idea! ”


“

A cancer survivor

This section provides a summary of the range ofevidence drawn together so far and is divided intofour parts:

PART ONE:An outline of the three standardised CYP patientpathways’ that demonstrates consistent carethroughout patient aftercare services.

PART TWO:A synopsis and breakdown of four ‘best practice’standard models of care that have emerged fromthe testing work and aligned to the threestandardised pathways.

PART THREE:The associated evidence relates to the followingkey points of the pathway:

• Entry into long term follow up• Clinical level of care• Evidence-based risk stratification of survivors• Transition

PART FOUR:• A summary of evidence from the children andyoung people testing and prototyping(October 2011)

• Health economic evaluation to supportmodels of care

• Patient experience• Nurse competence

Overall contextIn view of the expected exponential increase in thenumber of cancer survivors in the UK, the current levelsof aftercare provision will not be sustainable in thefuture. Therefore, the status quo is not an option.

In terms of cost, there is the potential to save a minimumof £3.25 million nationally over the next five years byapplying safe risk stratified pathways (and the fourmodels of care that emerge from the pathways) forchildren and young people cancer survivors.

The models of aftercareThe ten working principles and recommendations whichhave been outlined, although at this stage are focusedon cancer, can easily be transferred to other children andyoung people services for those patients needingcontinuing care for long term conditions. The building ofclinical evidence and knowledge learned may be alsoapplicable to adult cancer survivors.

The intention of this section is to provide the evidence ofwhy these models of aftercare pathways andrecommendations should be provided and accessible toall patients surviving cancer or needing aftercare servicesfollowing their acute episode of cancer.

The pathways, models of aftercare and ten workingprinciples are recommended by the NCSI CYP based onthe evidence that has emerged from the testing work asa “national standard” for all CYP centres across thecountry that they can adapt locally to fit in with localcircumstances, priorities and needs.



Summary of theoverall evidence

SECTION TWO:



The three children and young people aftercare pathwayshave been developed and refined during the past 18months. The final pathways presented in this publicationhave evolved from process mapping events with keystakeholders, cancer survivors, commissioners andclinicians and through an extensive consultation process.An integral component to the models of care are theassociated risk stratified levels of care that allow survivorsto access the appropriate level of care related to theirown clinical and psychosocial needs. Encapsulating thepathway framework is the care coordinator function andthe models of care.

Children and young people aftercare pathways



Care co-ordinator conta

Entry into longterm aftercare

Risk assessmentincluding psychosocialassessment careplanning

Care planincluding assigned

level of care

IT systempopulated

AftercareMDT

Diagnosticand treatment

MDT

Treatment

Treatmentsummary

Oncologyrelapse/SMN

Change in lateeffects profile

Pathway Clinical and psychological care

Transition

IT Systems

Planning and level of care

Frequency of foll

Treatment summ

Pathway is followed in conjunction with agreed protocols and guidelines

IT systempopulated

**There is a flexibCYP survivors from

TREATMENT PATHWAY

Rapid re-entry for resymptoms (r

Paediatric aftercare pathway



act located at HUB PTC

Regular follow upand review of care plan

Clinical nursespecialist

Consultant

Shared carelocal hospital

Earlyadolescentreview (locallydefined)

MDTreview

**Transitionat 16-18 yearsto youngadult services

**Transitionat 24-25 yearsto adultservices

Clinical level of care

Aftercare planning and model of care

MDTreview Refer to

palliativecare pathway

Patient and parenteducation andpsychological support

Tests and review

Referral tospecialist clinicas required

ow-up is determined by level of risk

ary and care plan is a living document to be updated at any event across the pathway

bility with age range of transition (transition relates to purposeful and planned movement ofm child and young adult to adult services)

The title of the pathway relates to the age of diagnosis

lapse, questions/advice/and newrelating to late effects) and SMNat any point along the pathway



Care coordinator function and automate




level of care

IT systempopulated

AftercareMDT

Relapse -oncology/SMN


Rapid re-entry for relapsesymptoms (relat

at a


Transition

IT Systems


Level 2 planned coordinated care

Frequency of follow-up is determined b

***There is flexibility to transfer throu

Both level 1 and 2 supported self mana

Treatment summary and care plan is a


MDT

Treatment

Treatmentsummary

IT systempopulated

TREATMENT PATHWAY

Teenage and young adult aftercare pathwayLevel 1 and 2 supported self management and planned coordinated care pathways



ed surveillance system by HUB PTC


GP (>18)

Shared carelocal hospital

Selfmanagement

***Transferto level1, 2 or 3pathway



e, questions/advice/and newing to late effects) and SMNny point along the pathway

MDTreview Refer to


Patient and parent educationand psychological support

Tests and review

Referral to specialistclinic as required

by level of risk **There is a flexibility with age range of transition (transition relates to purposeful and plannedmovement of CYP survivors from child and young adult to adult services)

gh levels of care on the pathways

agement and planned coordinated care

living document to be updated at any event across the pathway The title of the pathway relates to theage of diagnosis

CNS +/-telephonefollow up

Consultant(level 2 only)

Survivorship programmes

Exercise programmes

Level 2 planned coordinated care

MDTreview





Care coordinator function and automat




level of care

IT systempopulated

AftercareMDT


MDT

Treatment

Treatmentsummary

Relapse -oncology/SMN



Transition

IT Systems


Frequency of follow-up is determin

***There is flexibility to transfer th

Treatment summary and care plan

IT systempopulated

TREATMENT PATHWAY

Rapid re-entry for relapssymptoms (relat

at a

Teenage and young adult aftercare pathwayLevel 3 complex care



ted surveillance system by HUB PTC


MDTreview



***Transferto level1 or 2pathway



MDTreview Refer to


Patient and parent educationand psychological support

Tests and review


ned by level of risk

hrough levels of care on the pathways

is a living document to be updated at any event across the pathway

Consultantwith

automatedsurveillanceas required

Survivorship programmes

Exercise programmes

**There is a flexibility with age range of transition (transition relates to purposeful and plannedmovement of CYP survivors from child and young adult to adult services)

The title of the pathway relates to theage of diagnosis

se, questions/advice/and newting to late effects) and SMNany point along the pathway



The consultant led modelTraditionally, follow up and aftercare for cancer patientshave been provided by medical consultants which maybe within a tertiary treatment centre. However, with theexponential increase in the number of young adultcancer survivors, as well as supporting patient choice andthe need to repatriate patients back to their local hospitalas early as possible, this model of care may no longer beviable, sustainable or appropriate.

In order to overcome this, alternative models of followup care have been developed and prototyped.

The shared care modelThe shared care model is a professionally led shared carepathway with a clinical specialist and clinician at a localhospital or GP in the community in conjunction with aclinician at the Principal Treatment Centre (PTC). Thecare coordinator function is vital to the success of thismodel by identifying and providing the best clinical carefor the survivor.

The nurse led modelThe nurse led model may include a face to face clinicappointment, telephone follow up or postal follow up.This model of care is proving very beneficial particularlywith patients transitioning from young adult to a lateeffects or adult services.

The supported self management modelThe supported self management model gives the survivorthe ability to actively participate in their follow up caretherefore empowering the patient and buildingconfidence so the patient has the ability to makedecisions concerning their recovery within a supportedenvironment. Care coordination, treatment summaryand care planning and remote monitoring / recall systemsare vital for this model to be ‘best practice’. Survivorsneed and require robust stable systems in place to allowfor rapid re-entry back into the survivorship pathway atany juncture.

Models of care



The point at which a patient survivor enters long termfollow up varies depending upon the clinical practicewithin a particular centre. However, in principle, thestage at which a young person has completed theirepisode of acute cancer treatment and requires on goingsupport/care is their entry into long term follow up. Thisis an important stage from a ‘patient’s perspective’ (andtheir carer’s) in terms of their continuity of clinical care.Psychological support may be required at this or at othertimes of change for the young person.

The purpose of long term follow up is to ensure thatpatients have continuing care after their acute treatmentphase to ensure that late relapse and clinical late effectsfollowing treatment are monitored, appropriatescreening investigations are planned, treatmentinstigated as required, and patients are supported toreturn to a ‘normal life’ after their cancer episode.

It is recommended by the NICE CYP IOG that there arededicated long term follow up clinics provided for allpatients led by experienced clinicians in this specialty.

Entry into long term follow up



With the rapidly enlarging cohort of survivors it isbecoming vital to look for different models to provideappropriate care. Risk stratification using levels of care isessential to inform patient pathways and provide thebasis for effective follow up models.

Survivors of cancer may also develop chronic conditions,so the use of the chronic disease models for differentlevels of care fits well with the idea that levels of care canbe stratified by risk of developing conditions or requiringon going management.

Risk stratification is based on: disease; type of treatment;gender; age; and psychosocial needs. These effect thepatient at the time of treatment and at certain time

Clinical levels of care

points along the patient pathway resulting in a level ofcare being assigned.

Within the Children’s Cancer Leukaemia Group (CCLG)late effects section, a group published defined levels ofcare as a means of developing strategies for long termfollow up in this expanding population of survivors.

These levels were supported by an earlier publicationupdated in 2005 entitled “Therapy based long termfollow up: Practice Statement” by Skinner R, WallaceWHB, Levitt GA, eds. United Kingdom Children’s CancerStudy Group, 2005. (This publication is available onlineat: www.ukccsg.org.uk/public/followup/PracticeStatement)

LEVEL 2

LEVEL 1Characteristics may include:• No routine outpatient attendances• Information on prescription and/or aneducational intervention

• Automated surveillance tests with resultsby telephone or post

• Ability to re-access system with/withoutreference to GP

LEVEL 2Characteristics may include:• Planned review of care e.g. hospital,community, face to face or telephone

• Clinical examination if required• Patients with co-morbidities• Those who are unable/decline toself manage

LEVEL 3Characteristics may include:• Complex rapidly changing health• Complex treatment complications orsymptomatic needs

• Complex ongoing treatment regimes• Other input required e.g. cardiology,haematology, gastroenterology

• Requiring regular MDT reviewsPotential model of care being tested

LEVEL 1

LEVEL 3



ObjectivesThe overall objective of this risk stratificationinvestigation was to use the British Childhood CancerSurvivor Study (BCCSS) and other relevant sources ofinformation to estimate the risk of specific adverse healthoutcomes for different groups of survivors. As defined interms of their type of cancer, aspects of treatmentreceived and other relevant factors. In particular, toinvestigate the risks experienced by groups of survivorsdefined in terms of modified Wallace levels, to informthe question of safety of clinical follow up of childhoodcancer survivors proposed by the NCSI-CYP workstream.Ultimately, this may allow empirical refinements of themodified Wallace levels based on the observed risks.

ConclusionsFor survivors of ALL the modified Wallace levels of followup provide good discrimination between groups ofsurvivors in terms of their risks by 20 years fromdiagnosis. From the safety perspective the area ofgreatest concern relates to the risk of death from non-neoplastic causes which are low in absolute terms forLEVELS 1 and 2 at 0% and 0.1%, respectively, by 20years from diagnosis. It is now being investigated howthis risk compares with that expected.

For cancers other than leukaemia, although theallocation into the modified Wallace levels was based onrudimentary treatment information, there is again gooddiscrimination between groups of survivors in terms oftheir risks by 30 years from diagnosis. From the safetyperspective, again the risks of death from non-neoplasticcauses are low in absolute terms for LEVELS 1 and 2 at1.5% and 1.6%, respectively, by 30 years from diagnosis.Again, It is now being investigated how this riskcompares with that expected.

Evidence-based risk stratification of survivors

The empirical risks of serious adverse health outcomes inrelation to the modified Wallace level proposed by theNCSI-CYP workstream have been provided. In terms ofsafety concerns relating to LEVELS 1 and 2, who do notreceive hospital-based follow up, this initial investigationprovides reassurance that the risk of death from causesother than recurrence and subsequent primary neoplasmis low in absolute terms. The pattern of risk for seriousnon-fatal non-neoplastic adverse health outcomes needsfurther investigation, which is underway, but in broadterms this initial investigation provides evidence thatproposed LEVELS provide clear and strong discriminationin terms of risk.

The following is an extract from research from the University of Birmingham, led by ProfessorM M Hawkins and his team; this research was commissioned by the NCSI CYP workstream.The final report is available at: www.improvement.nhs.uk and www.ncsi.org.uk



Transition is a key component of the survivorship journeyto empower young people as they become responsiblefor making their own health care decisions. CYPsurvivors are assessed and prepared at different timepoints across the pathway for transition to adult services.Transition has been defined as “a purposeful, plannedprocess that addresses the medical, psychological andeducational/vocational needs of adolescents…withchronic illness as they move from a child centred to adultoriented health care system” (Department of Health,2006).

There is no definitive age for transition as this is driven bythe individual needs of the patient. However, it shouldbe flexible, carefully planned and happen as soon as it issafe and appropriate to do so based on the needs of thepatient. Clinical nurse specialists (CNS) play a key role intransition by assessing the emotional and psychologicalreadiness of the young person to take more responsibilityfor their own care, and develop appropriateindividualised interventions to support them to do so.They also work with other agencies to develop clearpathways and guidelines for the transfer of long termfollow up care between services (RCN Competences2011)

Although transition clinics are being conducted at somePrincipal Treatment Centres (PTC) there is no consistencynationally.

Transition

Best practice evidence suggests that the next stepsmust include the following:

Create a description of transition services thatcan be adapted locally and ‘fit’ with localresources and geographical requirements

Establish clear transition policies/procedures/guidelines for Health Care Professionals (HCP)

Establish clear guidance for adolescents whowill transition to adult services – identifyingwho is responsible for care

Promote good practice as identified by thetransition care models already established

Identify inequalities especially services inremote areas and deliver appropriate support

Continue to monitor and assess outcomemeasures for new and existing models oftransition

Develop appropriate training resources forHCPs across the models of care which includetransition

Adapted from Think Transition – Edinburgh (2008)





Risk stratification using levels of care is essential to

inform patient pathways and models of care and

needs to be based on disease, type of treatment,

gender, age and the psycho social needs of the

cancer survivor at the time of treatment and at

times points along the aftercare pathway.”

“

A health professional



The following evidence has been sourced through anumber of data collection methods which include:

Demonstrated evidence that takes into accountthe core elements of the QIPP agenda

Audits

Patientsatisfactionsurveys

Delphiquestionnaireand requirementsanalysis

Focus groups/workshops/education events

Surveys with stakeholders

Interviews - patients/carers/Health Care Professional

Psychosocial evaluationtools

Post code/demographicaudits

York Health Economic Consortium exercise

Consultation processes with health careprofessionals, patient representatives, Departmentof Health and commissioners

Comparison of accuracy of data received from GPsfrom Hospital Episode Statistics (HES)

Shadow monitoring

Additional qualitative data to support the evidence can be found on page 38-39



Key points across theCYP aftercarepathway

Why is it important? Aligned with keyelements of the QIPP agenda

What is the evidence? Summaries of evidencecan be sourced from the test site contacts insection 7

This function is important to streamline andcoordinate survivor aftercare of clinical andnon-clinical services and to ensure thepatient is seen by the appropriate person.This role could be a clinical or non-clinicalperson as appropriate and beinterchangeable along the pathway. Thereare cost benefits if this function is carriedout by an administrator, when appropriaterather than by clinical staff. (Productivity)Potential to reduce the number of patientslost to follow up. (Quality)

A long term follow up administrator fulfillingthe function of a care coordinator, is aneffective conduit for receiving enquiries andwhere necessary, triaging them in a streamlinedmanner to the appropriate member of theclinical team. (GOSH)

Care coordinatorfunction

Lack of a reliable recall system in a mobilepopulation of patients impacts on patientsafety. (Quality)

GPs have indicated that they have the ability torecall patients for annual tests, but felt theresponsibility sits with the PTC as currently thereis no reliable system being available for recall.(Birmingham)

Automatedsurveillance andre-call systems

Pathways can be accessed at any point onthe pathway reducing the need foremergency admission, late relapse andprevention and/or exacerbation of lateeffects with the consequent costs. There arecost benefits attached to a streamlinedaccess process. (Quality, Productivity,Prevention)

Data shows that 9 patients have safely re-entering the pathway. (Birmingham)

There was general consensus from professionalson the need for open access for survivors toobtain advice. (Bristol)

Treatment summary and care plan with contactdetails provides patient support with clear linesof re-entry into the system as necessary.(Birmingham)

Rapid re-entry intothe pathway

Provides base line patient treatmentsummary & care plan information tosupport self management. This may lead toreduced cost of after care. Promotessharing of information between healthprofessionals (importantly GPs) and providesthe survivors with a comprehensivesummary throughout their aftercarejourney. (Quality, Productivity,Prevention)

Data from the prototypes site (6 months of datacollection) demonstrates 94% patients with atreatment summary. 99% of patients had orwere issued with a care plan; this number hasincreased over the testing period. (NHSImprovement)

88% of parents, 83% of the young people and94% of the shared care doctors felt that theTS/CP was useful to them. (GOSH/Christie)

90% of GPs reported the TS/CP informationhad a high level of acceptability.(GOSH/Christie)

There is professional acknowledgement ofimportance of treatment summaries. (Bristol)

Treatment summaryand care plan






Meets NICE Guidance requirements.Provides continuity of care throughout thelife of a patient. For example, themonitoring of late effects; and supportspatients return to a ‘normal life’ after theircancer, including the management of theconsequences of treatment. (Quality,Prevention)

Data from economic analysis indicates that thepilot sites have the following caseload levels:

Leeds: 909GOSH: 1,263Bristol: 421Birmingham: 635 (York HE)

Continued long term follow up facilitates earlierdiagnosis of silent problems, such ashypertension, cardiomyopathy, and adultgrowth hormone deficiency. (Bristol)

Entry into long termaftercare

To inform care planning and aftercareclinical decision-making. NICE IOGcompliance. (Quality, Productivity,Prevention)

Clinical audit tool provides information toinform the prioritisation for patients for MDTdiscussion. (Bristol)

Aftercaremultidisciplinaryteam (MDT)

Risk stratification is essential for the safeclinical care of patients to inform levels ofcare, patient pathways and effectiveaftercare models to meet individual needs.Appropriate levels of after care producescost benefits & enhanced productivity.(Quality, Innovation, Productivity,Prevention)

Initial investigation provides evidence thatproposed levels of care provide clear and strongdiscrimination in terms of risk. (Riskstratification exercise led by The Universityof Birmingham, Professor Mike Hawkins)

Professional consensus on the need for riskbased plan for follow up after assessment atspecialist aftercare service. (Bristol)

Following the initial risk assessment thecomplexity of patient need should influence thelocation of their aftercare. (Bristol)

Risk stratification






Survivors should be assessed and providedwith the necessary psychosocial interventionat points along the pathway. This is betterfor patients and has the potential to preventexacerbation of problems and more costlyinterventions. (Quality, Innovation,Productivity, Prevention)

The initial findings indicate the following:

The psychosocial screening tool can be usedacross the patient pathway as a repeatedmeasure, which will provide a better patientexperience as it will allow provision of the rightlevel and amount of care.

There will be a preventative impact in terms ofseverity of problems, as they will be picked upearlier, which will overall improve the patient’squality of life.

Using the screening tool and the accompanyingaction plan will allow the patient to ask for helpor indicate they would like help, which willallow quicker access to the referral pathway.

The screening tool does not need a qualifiedmental health professional to administer it. Thismay reduce the need for specialised staff toimplement the tool making it accessible andeasy to use. (RMH)

A study involving patients and their parents.There is some evidence that structuredpsychological support would be helpful to getsome young people back on track once thetreatment phase is over. Though some seem toescape relatively intact, the quality of life ofothers has been severely compromised, socially,occupationally and aspirationally. (Cambridge)

Psychosocialassessment

Risk stratified models of aftercare need tomeet the clinical requirements of individualpatients; they need to be effective andinterchangeable along the pathway. Theyneed to be accessible, locally based wherepossible and allows for patient choice.(Quality, Innovation, Productivity,Prevention)

Defined principles of late effects model of care– principles can be found in section 3Robust case studies demonstrating effectivenessof Models of Care in a series of previous CYPpublications (NHS Improvement)

Models of care






With the exponential increase of survivorsof childhood cancer the traditional model ofclinician led care is no longer viableAppropriate level of care is important tomeet patient need and choice safely andcost-effectively. (Quality, Innovation,Productivity, Prevention)

Confidence in professionals ranked as the mostimportant factor in choice of location for followup. (Bristol)

Standardised pathways and proposed models ofcare have been clinically validated by the RiskStratification Exercise. (Risk Stratificationexercise led by The University ofBirmingham, Professor Mike Hawkins)

The number of patients risk stratified toappropriate models of aftercare demonstratesthe effectiveness of this framework. (Leeds,Birmingham, GOSH, Bristol)

Estimates indicate that the number of survivorswill rise over the next twenty years, leading toincreased costs. See future cost estimates inYork HE summary below)

75% of patients value the nurse led clinic.Survivors were generally satisfied with thequality of information received and the mannerin which it was communicated. (GOSH/Leeds)

More than ¾ of the young people (78%) foundit easy to discuss issues with the nurse and 75%understood their treatment and late sequelae.(GOSH)

97% agreed or strongly agreed that they werehappy to see the specialist nurse for their clinicappointment and that they would be happy toreturn to the clinic for continuing follow up.(Birmingham)

The verbal and written information receivedwas appropriate and clearly explained for 97%of respondents and 68% of patients wouldprefer to attend for a Nurse-led appointmentrather than a consultant-led clinic.(Birmingham)

Clinical levels of carecomprising:

Clinician led

Nurse led






The Pan-Thames survey included three primarytreatment centres, GOSH, UCLH, RMH with 22Paediatric Oncology Shared Care Units (POSCU)in the north Thames area and 20 POSCUS insouth Thames region. There was overwhelmingsupport from the centres who answered thequestionnaire. All centres would provide Level 1surveillance and many where able to provideinvestigations to level 2 patients (e.g. ECHOs).(GOSH)

Providing a local service in Brighton, reducestravel time and costs to patients who wouldotherwise have to travel to St Georges,therefore reducing time off work/school.(Brighton)

GP follow up service results indicate an overallwillingness from primary care physicians topartake in annual (or preferably less frequent)health questionnaires on behalf of theirpatients. 94% were happy to complete ahealth-related questionnaire, 90% felt thequestionnaire was an appropriate length and59% indicated that they would be happy tocomplete the questionnaire on an annual basis.(Birmingham)

Results of a three month GP shadow pilotdemonstrated 78% of patients were identifiedas suitable for supported self management.(Leeds)

Professionally ledshared care

Supported selfmanagement






To provide individual & responsive care itneeds to be delivered in the mostappropriate location and provided by themost appropriate model of care. (Quality,Productivity, Prevention)

65% of GPs were willing to arrange aftercareexaminations & monitoring. (Leeds)

The Birmingham GP aftercare results as shownon the previous page

“Patient Travel Survey” demonstrates thatthere is a cost benefit in travel time and money(70% less in cost & distances travelled) ifpatients attended locally based aftercareservices rather than traditionally attendingclinics at the PTC. (Brighton)

A post code analysis demonstrates that 70% ofsurvivors were willing to travel 60 minutes for afollow up clinic. (Bristol)

Recalling patients using GP systems is notdifficult, the number of cancer survivorstransferring back to primary care could be verysmall per GP surgery therefore GP systemscould be used as a tool for recalling forsurveillance testing. (GOSH)

Aftercare planningRegular aftercare andreview of care plan

Non clinical aspects of care are essential tosupport survivors to live as normal a life aspossible after the effects of cancertreatment and the associated late effects.(Quality, Innovation, Prevention)

A contact card for direct access to Carecoordinator / HCP and website informationhave been developed to support and informlong-term survivors by the provision ofsupplementary information to that alreadyprovided in the clinical setting. Website datashows 635 hits over the past 6 months since itsinception. (GOSH)

Information provided to patients attendingclinic show many patients received informationon more than 1 subject.On average:level 3 = 2.8 subjectsLevel 2 = 2.7 subjectsLevel 1 = 2.2 subjects

With more than 12% of Level 2 & 17% of Level3 patients identified unmet needs related topsychology. (Bristol)

Patient and parenteducation andpsychological support






See point on the pathway – clinical modelsof care

Twice as many investigations are needed forLevel 3 patients versus Level 2 patients. Theneeds of Level 2 patients are notinconsequential when compared to Level 1 -indicating resource implications. (Bristol)

65% of GP’s are willing to organise certainfollow up examinations and Investigations.(Leeds)

77% of GPs were happy to perform routinetoxicity monitoring on patients (includingannual BP and urinary protein: creatinine ratio)only 53% had the ability to recall patients forthese annual tests. (Birmingham)

Results of tests andreview with patients byhealth professionals

Early intervention / prevention could avertmore costly care if undetected conditionsare left untreated.

Follow up services need to be accessible toprovide survivors with the right informationto make informed decisions related to thelate effects of treatment and access theappropriate specialist clinics at theappropriate time along the survivorshippathway. (Quality, Productivity,Prevention)

Review of fertility services shows markedimprovement in referral to reproductivemedicine and discussion of fertility options.(Cambridge)

Thyroid disease is common amongst survivors ofchildhood malignancy and is reported by 12.4%of subjects in the BCCSS. (Birmingham)

Growth hormone deficiency was less likely to bediagnosed in survivors not on follow up (18.2%vs 6.6%) and survivors were less likely to receivegrowth hormone replacement if they were notbeing followed (17.1% vs 5.6%). (Birmingham)

Twice as many investigations are needed forlevel 3 patients versus level 2 patients. (Bristol)

Implementing five yearly follow upappointment, with necessary investigations e.g.echocardiograms performed on the same day,reduces unnecessary appointments.(Birmingham)







To enable patients to live as full and normala life as possible by providing them withresources and information to help supportand manage their after effects followingtheir cancer treatment. (Quality,Innovation, Prevention)

The ‘On Target’ project currently underdevelopment aims to develop a servicemodel which will ensure TYA survivors aresupported after a diagnosis of cancer andits treatment. (Quality, Innovation,Productivity, Prevention)

There is early indication that positive changeshave resulted for attendees of survivorshipprogrammes six months after attending thecourse: Improvement in anxiety scores 52%;Improvement in depression scores 53%;Improved body Image 60%; Social difficultiesimproved 63%. This data will be interrogatedover a five year period to provide more longterm findings. (Christie)

Component of the planned programme includeadvice on:• Health risk assessment, surveillance andmonitoring

• Healthy lifestyle and physical rehabilitation• Education, employment and finance,• Psychosocial and emotional wellbeing• Survivor information and peer support(Bristol)

Survivorshipprogrammes

Fatigue is a chronic problem for cancersurvivors – tailored exercise programs toimprove physical function and mentalwellbeing enable patients to return to aneffective quality of life after treatment forcancer. This work has shown that thissupports survivors returning to a normal lifeand employment - contributing to theeconomy sooner than they may have beenable to do so. (Quality, Innovation,Productivity, Prevention)

An exercise DVD has been designed by survivorsfor survivors. (Cambridge)

Value of exercise has been identified throughsurvivorship programmes. (Christie)

Initial pilot of exercise questionnaire suggestslittle information is given by many specialistsbut that young people want this information.Initial a review of 14 specialists (acrosspaediatric oncology and adults) suggests a lackof knowledge / awareness of this informationand this was thought to be due tophysiotherapists, however, review shows aninadequate number of physios are able toprovide this as an independent service.(Cambridge)

Exercise programmes






A seamless transition from paediatric careto young adult and again into long termaftercare is essential for all patients toprovide effective continuity of care.Effective transfer has direct patientbenefits. (Quality, Productivity,Prevention)

After patients have had a transitionappointment and no longer need hospitalsurveillance; around 30% of patients could bedischarged to primary care with regularsurveillance. (GOSH)

Extensive work by a team in Edinburgh hasshown that an effective transition servicerequires an effective and proactive approach.Core principles that they have developedhave been adapted and are referenced insection 2 - part 3

Transition at stagesthroughout thepathway



The economic costs of cancer survivorship servicesfor children and young people – an examination ofthe potential savings through risk stratification andthe adoption of new models of care

York Health Economics Consortium has been conductinga review of the economic costs of cancer survivorshipservices to help inform the work of the NCSI. Thissummarises some of our key findings andrecommendations from our work so far. A more detailedreport will be provided to NCSI in October with the finalconclusions.

The costs of child cancer survivorship services arecomplex. The trajectory of late effects and complicationsonce a person has survived cancer are unpredictable.The requirements that survivors have vary from person toperson depending on the type of illness they have hadand the treatment that they received during their acutephase.

The full economic cost of cancer survivorship services forchildren and young people includes a number of factors,summarised below:

CostsThe starting point for this exercise was to ascertain andgather the procedures and costs of NHS childhoodcancer survivorship services provided at the four pilotsites (Birmingham, Bristol, Great Ormond Street andLeeds). The following challenges were encountered::

• Not all sites have easily accessible caseload and activityinformation

• Sites have different service models which are not easilycomparable

• Follow up services are not commissioned separatelyfrom other services (e.g. they may be part of anoncology contract) so cost information is difficult toobtain

Data based on a Department of Health case note reviewprovided a basis for estimating the costs of secondarycare survivorship services. This found that the averagecost per patient per year over five years was as follows:

• Level 1: £63• Level 2: £115• Level 3: £162

In order to calculate a full economic cost of survivorshipservices, additional support costs of providing the serviceneed to be included, such as capital costs, overheads andadministrative costs. Tariff costs have therefore beenused as a proxy cost measure in the absence of detailedaudit analysis of the costs of providing services at eachlevel. On the basis of cost data obtained from one of oursites it has been found that this is approximatelyequivalent to the cost of providing a consultant-led clinicannually for each survivor. An average for consultant-ledclinics has been calculated at £290, £200 for nurse-ledclinics, £24 for telephone clinics and £20 for virtualreview, whereby the secondary care team carries out anannual review of survivors, based on data provided byGPs.

Direct health costsPrimary, secondary and

community care

Other care costsLocal authority support,voluntary sector

Costs to survivors and their familiesAttending treatment, impact of late effectson employment and fertility

Health economic evaluation tosupport models of care



Survivors require investigations as part of their aftercareand the number and type vary depending on the type ofillness and treatment they have received. The datagathered by the Department of Health case note reviewwas used to calculate the additional annual cost of a setof standard investigations including blood tests,echocardiograms, x-rays and MRI and CT scans. Thisestablished a measure of consistency for the costs ofsurvivorship services which can vary considerably for eachindividual over a long period of time.

Through interviews and data gathering from the fourpilot sites, a model to show the potential costs ofproviding survivorship services in three ways wasconstructed:

• A largely consultant-led outpatient service for allsurvivors

• A risk stratified service based on the Wallace levelsof risk

• A high quality model for future after-care based onNICE guidance around lifelong contact with survivorsand the new NHS improvement care pathways

This indicates a potential annual cost saving from riskstratification of £66,000, or around 22%. The proposednew model of care shows potential to reduce outpatientclinic costs still further but the introduction of newinitiatives as part of the high quality model of futureafter-care carries additional costs which will make thisoption more expensive. However, the freeing up of clinictime should give additional capacity for services to copewith increased numbers of survivors in the future.

The impact of the growth in the numbers of survivors willaccentuate the growth of secondary care costs,particularly given the NICE guidance recommendationsaround maintaining lifelong contact with childhoodcancer survivors. The estimated future costs have beenmodelled, based on estimated annual growth insurvivorship numbers of 0.95% and inflationary growthin costs:

Clinic costs - Level 1



Total clinic costs

Investigations

Care-co-ordinator (Grade 4)

Key worker (Grade 7)

TOTAL

Without riskstratification (£)

n/a

n/a

n/a

263,320

43,500

n/a

n/a

306,820

With risk-stratification(current model) (£)

6,166

108,773

81,607

196,546

43,500

n/a

n/a

240,046

Proposed newcare model (£)

3,378

54,414

77,684

135,476

43,500

28,500

56,000

263,476

Costs of different models of care based on a caseload of approximately 900 survivors



Without risk stratification

With risk stratification

Proposed new care model

2010/11 (£)

306,820

240,046

263,476

2014/15 (£)

369,228

288,699

315,667

2019/20 (£)

443,027

346,242

377,229

2024/25 (£)

530,549

414,491

450,279

2024/25 (£)

634,743

495,731

537,165

Future costs based on estimated annual growth in survivorship numbers of 0.95%

Costs to survivors and their familiesIn respect of costs to survivors, a Department of Healthsurvey of childhood cancer survivors in follow up clinicsestimated an average non-health cost per clinic visit of£86. Changing the profile of service provision from thecurrent risk stratified approach to the new pathwayapproach would result in 335 fewer clinic attendancesper year, using the data in the proposed model. Thiswould therefore equate to an annual direct cost savingto survivors and their families of £28,789.

ConclusionsEconomic analysis of data indicates that the costs ofsecondary care survivorship services for children andolder people have been reduced by risk stratification ofpatients. To verify these findings a more in-depth analysisof the costs and activity involved in survivorship serviceswould also be beneficial.

There may also be potential for further improvements inproductivity if the new models of care are adopted,based on the new NHS Improvement care pathways,through the introduction of greater risk stratification andalternative forms of surveillance such as virtual review.However, there are additional costs associated with thesegood practice approaches.

The growth in the numbers of cancer survivors and theadoption of NICE guidance for patients to maintainlifelong contact with long-term follow up services meanthat the costs for the different models of care provisionwill grow in the future. Primary care providers may bewilling to carry out some investigations which arecurrently provided by secondary care providers.

There is also potential to reduce the direct costs tochildhood cancer survivors and their families by reducing

the need for them to attend annual clinics. Although thisreview did not examine the costs of non-NHS care costs,the support services provided by local authorities and thevoluntary sector are important factors in ensuring that arisk-based approach to service provision for cancersurvivors.

The levels of survivorship services vary considerably acrossEngland and the number and range of investigationscarried out by secondary care providers is not consistent.In addition different provider sites have not alltraditionally provided one follow up clinic per year forcancer survivors, with some providing more than this andsome only one clinic every five years. This review has notexamined the quality of the services provided or theoutcomes for patients.

Recommendations from the economic costing workCommissioners should:• Encourage childhood cancer survivorship serviceproviders to consider the extent to which they currentlyrisk stratify their current care models

• Consider new models of care based on the new NHSImprovement care pathways

• Review the potential costs of new models of care andtheir likely impact across the health economy

• Explore the extent to which primary care providers areable and willing to carry out investigations that arecurrently conducted in the secondary care setting

• Consider carefully and agree with local providers theelements of care to be included in their tariff

Further research should be carried out to examine theoutcomes of services for cancer survivors, comparingexisting services with new initiatives such as theintroduction of care co-ordination.



The NCSI have continually sought to hear the viewsexpressed by young people. Their voices provide the basisfor establishing the use of treatment summaries and careplans (TS/CP), transition appointments, encouragementof supported self-management and the provision of akey worker. Their views on all of these areas have beenbrought together in a separate document. But wethought it useful to pick out some highlights here.

Key messages and themesThe issues raised by young people during workshopswithin Cambridge University Hospitals NHS Trustincluded:

• An interest in receiving personal psychological support• Having access to more information regarding theirdiagnosis, and its consequent late effects – particularlyconcerning fertility

• Receiving more information regarding what exercisesthey may do

In addition, they felt it was important to haveinformation pertaining to immunisations, insurance,advice regarding resuming academic studies anddiscussion of fertility issues - at the end of treatment.

In March 2010, CLIC-Sargent conducted a studyinvolving 90 children, aged 7-13 years of age. Resultsindicated that even within this young age group,psychological distress was raised as a key issue; whichcould involve anxiety about death – particularly if theyhad lost a friend to cancer. Other issues raised includedproblems with fatigue, concerns about intellectualdeficits following treatment, falling behind withschoolwork and issues with family support.

Further to this study, CLIC-Sargent undertook a ‘Morethan my illness’ survey in August 2010, which involvedquestioning more than 200 young people aged 16-24years of age, to find out what they thought important infollow up care, responses included:

• Having more treatment at home, withoutcompromising access to specialist services whenrequired

• Being able to maintain a social life• Keeping up with school work- inability to do so tendsto correlate with decreased self-esteem

• Having emotional support and more advice on generalhealth, sex and finances

• Having a point of contact for support

The survey also revealed that 38% of young people saidthey were not adequately informed regarding whatwould happen next. Many 16-18 year olds (64%)reported falling behind with their school work or notperforming at a level they were previously capable of. Itis clear that patients want to be better informed and thatunderstanding and support and education of teachers, isessential for patients resuming academic studies post-treatment. This is highlighted by a comment madeduring the Teenage and Young Adult (TYA) focus groupat Addenbrookes Hospital.

The patient experience



“Chemo brain makes everything slow down. Inschool, you’ve lost it during treatment and then it’sall gone and it takes ages to come back. Theteachers just don’t get that.”

Patient Feedback

Besides academic support, evidence suggests patientswant to discuss other non-clinical concerns in clinic. 33%of Brighton LTFU patients (Royal Alexandra Children’sHospital) discussed issues such as employment,relationships, weight and depression, in addition toeducation during their clinic appointment.Common concerns have resonated throughout thevarious workshops, surveys and interviews conducted byCYP initiatives.

The key issues raised by young people substantiateprovision of a holistic aftercare service, offering morethan just a clinical examination. In addition, the evidencegained from patient’s experiences has led the CYPinitiative to conclude that the key areas needed toimprove services include (but are not limited to):

• Care plans and treatment summaries need to beprovided to all service users

• Reduction or elimination of unnecessary follow upappointments, based on the outdated one-size fits allapproach to follow up. This would also decreaseschool absences and the risk of survivors falling behindwith their academic work

• More technology should be utilised - e.g. websites forinformation, electronic care plans

• Care needs to be tailored to individual needs – as eachis unique and have different levels of needs

The patient experience full report is available at:www.improvement.nhs.uk or by visiting www.ncsi.org.uk



The competence framework for UK nurses involved inthe long term follow up care of children and youngpeople after cancer has been developed as part of thisinitiative which has been ratified by the Royal College ofNursing. It builds upon the recommendations of theNational Institute for Health and Clinical Excellence(NICE) Children & Young People’s (CYP) ImprovingOutcomes Guidance (IOG) (National Institute for Healthand Clinical Excellence 2005).

The competence framework will address and focus onspecific issues related to the long term follow up (LTFU)of care (including late effects care and survivorship) forsurvivors of childhood, adolescent and young people’scancer. Whilst the original intention was to concentrateon nurses working with children and young people postcancer care it has been found that the majority ofcompetences outlined are relevant to adult LTFU care,other than the physical and emotional developmentalstages of children and young people.

This framework has the potential to provide benefits forboth nurses and their employers, especially at presentwhere the gap and inconsistency in service has beenidentified, and where there is scope to realise advancedlevel nursing (NCAT 2010) The nurse competence workhas ben led by the Sheffield team. The document isavailable at: www.improvement.nhs.uk orwww.ncsi.org.uk

Nurse competence

The team at Sheffield TeachingHospitals NHS Foundation Trust



Your hospital has been fantastic to me as I have

grown up. each appointment has supported me

and my family. These follow up appointments are

really reassuring for me as I grow up and want

questions answered. Thank you to everyone who

has ever helped me.”

“

A cancer survivor

The following 10 key principles and recommendationsoutlined below have emerged from the testing andprototyping work undertaken by the children and youngpeople survivorship teams. A rigorous approach hasbeen given to the importance of patient choice, patientsafety, clinical opinion, advice expertise and overallpatient ‘buy-in’.

In addition, all aftercare services should be based on thefollowing rationale shown in the five bullet points below:

Services should be:

• Safe• Responsive to individual clinical andnon-clinical needs

• Cost-effective• Provided by the appropriate health careprofessional

• The appropriate health care professionaleducation and workforce planning provided tofacilitate and support the modification of carefrom traditional to alternative models of care

10 key principles and recommendations

1. All cancer survivors, wherever they live canand should expect to have informed choicesin relation to the services provided for themin order to ensure that they meet theirclinical and non-clinical needs throughouttheir aftercare journey. This will be providedthrough an established aftercaremultidisciplinary team which recognises andadapts the care provided to meet the needsof the patient.

2. All aftercare services are based onconsistent, defined patient pathways (asshown in section 2 of this document)



The ten key principlesand recommendations

SECTION THREE:

3. All aftercare is based on safe risk stratifiedlevels of care endorsed by clinicians (asshown in section 2 of this document)

4. All cancer survivors should have access tothe appropriate models of aftercare which is‘right for them’ (as shown in section 2 ofthis document) and in line with the nationalQuality Standards of National Institute forHealth and Clinical Excellence (NICE)

5. All cancer survivors can expect to be givena treatment summary and care plan at theend of their treatment and at all stages oftransition

6. All cancer survivors should have access to acare co-ordinator function to streamlinetheir care. The role and practicalarrangements may vary dependent uponlocal circumstances and service provision

7. All cancer survivors should have pre-planned and pro-active transitionarrangements at all stages of their aftercare

8. All cancer survivors, who are clinically safeto self-manage (as defined in section 2 ofthis document), will be provided withcomprehensive information and be involvedin a remote monitoring and / or alertsystem(s) which prompts screeninginvestigations

9. All cancer survivors “experience feedback”should be routinely monitored and directlyinfluence commissioning decision-making

10. There will be a minimum 20% reduction involume nationally in hospital basedoutpatient appointments (those patientsalready routinely receiving outpatientfollow up aftercare)



We didn’t wait very long for our appointment. it

was better being with patients that are in follow

up rather than sitting with patients who are having

treatment as this can be very painful and bring

back memories.”

“

A cancer survivor



Throughout the NCSI activity the CYP testing andprototyping sites have shared their progress, learning andevidence to provide a basis for spreading andimplementing the pathways and models of care – as thenext steps. All of this information has been publishedand presented at a series of national workshops on a sixmonthly basis during the past two years and is readilyavailable on both the NCSI (www.ncsi.org.uk/) and NHSImprovement (www.improvement.nhs.uk) websites.

Both of these websites are regularly updated to highlightprogress with practical examples from the testing andprototyping teams. The CYP work has also beenpresented at national and international forums topromote and further spread this improvement work.

The next stage needs to accelerate the spread, adoptionand adaptation locally of the four proposed models ofcare (as described in section 2 of this publication) with astructured and focused approach involving all of theteams and clinical leaders.

The latest evidence and learning from the initial CYPtesting and the further work by the prototyping teams,presented within this publication now needs to beadopted nationally. This will enable all cancer patients tobenefit and also to achieve consistency of serviceprovision irrespective of age, ethnic background or whereyou happen to live in the country.

This will be achieved by the following six step-plan(individual steps will take place in parallel rather thansequentially) to influence change and increase adoptionof the proposed models of care:

Steps to spread andimplementation

SECTION FOUR:

Step 1A planned programme to present a set of key messagesto all children and young people centres (via existing /established forums) across the country by our CYP clinicalleads and advisors to audiences of their clinicalcolleagues (October 2011 to March 2012 initially).

Step 2Continuing the promotion of the evidence and thelearning via websites, national and international forumsto influence change (October 2011 –October 2012).

Step 3CYP workstream discussion and collaboration at anational level (through the NCSI national forums) and ata local level with commissioning organisations by theCYP teams and cancer networks to inform and influencedecision-making (October 2011 onwards).

Step 4CYP workstream and local actions by the CYP teams topromote discussion, collaboration and interaction withpatient groups, national and local patient representativesand other charitable organisations on an ongoing basisto critique and evaluate the direction and overallobjectives of the NCSI strategy (October 2011onwards).

Step 5Regular updates and communiqués via the Children’sCancer Leukaemia Group to generate interest, sharelearning and invite engagement (October 2011onwards).

Step 6Plan and arrange a national launch event in March 2012to present the refined pathways, models of care andsteps to implementation (October 2011 onwards).



Pfizer Excellence in Oncology AwardsEntry shortlisted in the Best Oncology Service Improvement Award category“(winners will be announced inNovember 2001) Designing and implementing safe and sustainable risk stratified care pathways"

Lost to follow up – Who, why and what can be done?Presentation at the RCPCH conference on 7 April, 2011

International Society of Paediatric Oncology, New Zealand, October 2011“Utilising a Requirements Analysis approach to integrate user and professional views into the design of acancer survivorship service”

European Symposium on Late Complications After Childhood Cancer, Amsterdam, September 2011Poster Treatment Summaries and care plans”

European Symposium on Late Complications After Childhood Cancer, Amsterdam, September 2011National Cancer Survivorship Initiative presentation

European Symposium on Late Complications After Childhood Cancer, Amsterdam, September 2011“Nurse-led transitional care: evaluation survey on behalf of the National Cancer Survivorship Initiative”

International Society of Paediatric Oncology, New Zealand, October 2011Patient experience presentation

Teenage and Young Adult with Cancer Education Day, Spring 2011Patient experience presentation

European Symposium on Late Complications after Childhood Cancer, Amsterdam, September 2011Poster and launch of the “Competence framework for nurses working in late effects care”

Multi-national Association of Supportive Care in Cancer (MASCC) Athens, June 2011Presentation of “Development and validation of paediatric distress thermometer to measure the need forpsychological input in survivorship care of young people”

The table below shows a sample of the forums and awards that the CYP work has/will be participating in



I felt I had more time with the nurse and it wasn’t

as rushed as usual. I also like seeing the same

person. She also discussed my Son’s general health

and we felt we were able to ask anything that we

may have been too trivial to ask the doctor as

they are very busy.”

“

A carer of a cancer survivor

The Department of Health in consultation with theother two stakeholder partners involved in theNCSI (Macmillan and NHS Improvement) aredeveloping an overall set of aims, objectives andoutcomes beyond March 2012.

Listed below is an initial set of expectations in relation tothe NCSI CYP workstream beyond 31 March 2012:

1. To provide aftercare that shifts patient care fromtraditional hospital based care to self-management.For example, care that is shared care or nurse led (ora suitable alternative model to meet individualpatient need). The aim is for these models to beroutinely commissioned across the country via anestablished after care multidisciplinary team whichincludes a seamless transition and care between theyoung people and adult survivorship pathways. Thistransition will incorporate the continuing recognitionof the specific needs across the children’s pathwayand includes sub-specialists for exampleendocrinologists, cardiologists.

2. Establish ‘best demonstrated practice models’(reflecting the models of care referred to at 1above) endorsed by commissioners and included inthe Cancer Commissioning Toolkit whichrecommends that the ‘best practical models’ shouldbe implemented as a strategy to promote andpresent widely across the country. This will alsoprovide a valuable resource for ‘best practice modelsteams’ to support other health professionalcolleagues in implementing the changes andachieving the specific standards in the future deliveryof services.

This will require appropriate tariffs to implementtransformed pathways and defined QualityStandards endorsed by National Institute for ClinicalHealth and Excellence (NICE), Royal Colleges andclinicians working in this clinical field

3. Acceleration of the spread, adoption and adaptationlocally of alternative models of care referred to as 1above .

4. Recommendations in relation to alternative modelsof care included in the Peer Review Standards



5. Under 18’s routinely included in Patient ReportedOutcomes Questionnaire (PROMs) and ‘best practicemodels’ have PROMs as part of their measurementof successful outcomes.

6. Appropriate funding and support for GPs to beprovided to facilitate the shift of patients to primarycare, with particular reference to safe remotemonitoring and effective recall systems which areessential for the model to be successful.

7. Provision and access to exercise programmes forthose patients who would benefit both clinically andpsychologically.

8. 100% of patients to be provided with a treatmentsummary and care plan.

9. To provide at least a 20% reduction in the number ofoutpatients follow up appointments.

10. Data collection tools in place to collect informationthat measures the improvements and satisfactionfrom an individual patient, parent or carerperspective; including an obligation to collect dataon survivorship for the Cancer Outcomes andServices Dataset (COSD). Measures also need toreference the ‘best practice models’ in order to beable to collect measurable data and constantlyevaluate standards (with data potentially held withthe National Cancer Intelligence Network (NCIN).

11. Appropriate investment in resources / fundingnationally, to support the implementation andsustainability of alternative models of care; includingestablishing links to support teams to maximiseeconomies of scale in centres across the country. It isproposed that this level of funding be for a minimumof two years to support the emergence of fullyfledged services.

12. Provision of a national website to provide aftercareadvice and information to patients and healthprofessionals.

13. The provision of seamless care with adult servicesincluding creating ‘centres of excellence’ to provideclinical advice.

14. Continuing research and evaluation of aftercareservices.

National Cancer SurvivorshipInitiative Children and Young Peopleworkstream - expectations 2012-2015

SECTION FIVE:



I liked the fact that I had a chat with the nurse

on my own and then we invited my mum in. It

helped me to understand things myself and also

to know how it affected my mum and family.

I now understand that I need a blood

pressure check every year and urine check

from my GP.”

“

A cancer survivor

Ensuring that the most appropriate level and correctdelivery of aftercare is provided to all children and youngpeople living with and beyond cancer is the responsibilityof everyone involved within the patient’s pathway.

Since the prototyping sites have been embedding the‘models of aftercare’ within their NHS organisation therehave been similar key messages and considerationswhich, from a commissioning perspective, must bereflected upon to ensure that the models of aftercare aremaintained, successfully implemented and ultimatelysustained.

The following list is not exhaustive but highlights someof the medium to longer term issues relating to thecommissioning and delivery of aftercare services in thefuture.

• The aftercare provided and patient follow upprocedures connected to these patients are extremelycomplex and diverse. They should not beunderestimated. Every patient is different andfurthermore an individual, and like all individuals eachhave very specific needs which are both clinical andnon clinical. The length of time a patient is within anactual consultation can vary dramatically and thesystem must recognise this in order to have theresources in place to be adaptable. For example, nearly70% of patient consultation time takes more than onehour with some lasting two hours in duration

• In particular clinics where the patient consultation timefluctuates there has been a tradition and a tendency totriage patient needs which often means furtherreferrals to other specialists (for example cardiologists,endocrinologists). This could result in the patienthaving additional waiting time in relation to seeing thespecialist required and may also mean that the careprovided may not be locally based. This in turn couldinflict unnecessary extra cost for the patient and mayultimately further increase their emotional stress duringthis time



• Where aftercare services have been based andprovided locally and have also had the full support andbacking of the clinical expertise involved, feedback hasbeen extremely positive and well received from bothclinicians and patients. Patient have been engagedthrough out the initiative and this feedback will beavailable in the patient experience publication(www.improvement.nhs.uk). The benefits for thepatient are not just from a monetary perspective as thecare is being provided locally but meeting the patientsindividual needs in a timely manner has significantqualitative gains

• In order to provide a streamlined effective aftercareservice the role and function of a full time co-ordinatorand care co-ordination needs to be in place. This is toensure patients themselves and their expectations aremanaged effectively through the model of aftercarepathways

• The success of providing this successfully relies heavilyon full support, backing and engagement from primarycare. In order to establish this level of commitment andenthusiasm ‘education’ is and has been the keycomponent that has supported the traditional shiftfrom tertiary/secondary care

• The transference of secondary care clinical expertiseand knowledge to other parts of the NHS is anessential element to support the shift of care. This willenable patients to self-manage or be managed viashared care model more confidently as it has beenidentified there has been an issue of building clinicalcapability in primary care. However, in the interest ofpatient benefits and potentially cost this is an area tobe developed and focused upon in the future

• Finally, there is paramount importance with regards tosecondary care clinicians building and establishing alevel of trust and confidence with patients and GPs toenable them to be confident in being cared for byprimary care health professionals

Establishing and embedding thefoundations: The key messages

SECTION SIX:



I would like to see a front sheet on my notes with

a précis of my condition. Last time, the poor A&E

doctor spent two hours trying to work out my

medical history. Most doctors give up and ask

and that drags it all back.”

“

A cancer survivor

NCSI - Children and Young PeopleSteering Group Members

Faith GibsonCo-chair of CYP [email protected] & [email protected]

Gill LevittNational CYP Clinical LeadCo-chair of CYP [email protected] & [email protected]

Patricia MorrisNHS Improvement Director – Cancerpatricia.morris@improvement,nhs.uk

Judi TappNHS Improvement – National Improvement [email protected]

Adam [email protected]

Baba [email protected]

Maggie [email protected]

Andy [email protected]

Louise [email protected]

Mike [email protected]

James [email protected]

Rod [email protected]

Ryan [email protected]

Simon [email protected]

Alexandra [email protected]



Charlotte [email protected]

Greg [email protected]

Dara de [email protected]

Mike [email protected]

Frank [email protected]

Susan [email protected]

Helen [email protected]

Terry [email protected]

Nneka [email protected]

CYP Evaluation Team

Nicola BowdenIndependent [email protected]

Gill LevittNational CYP Clinical LeadCo-chair of CYP [email protected] & [email protected]

Judi TappNHS Improvement – National Improvement [email protected]

Kate PyeIndependent [email protected]

Faith GibsonCo-Chair of CYP [email protected] & [email protected]

Charlotte [email protected]

Contact details

SECTION SEVEN:

Test Sites

Birmingham Children's Hospital NHSFoundation TrustDr Helen JenkinsonConsultant Paediatric [email protected]

Sarah TranterService Improvement [email protected]

Cambridge University Hospitals NHSFoundation TrustDr Helen HatcherConsultant in Medical & TYA [email protected]

The Christie NHS Foundation TrustDr Ed SmithConsultant in Clinical [email protected]

Andrea SlaterProject Manager - Survivorship Programme(Contract complete - has now left)

Great Ormond Street Hospital forChildren (GOSH)Dr Gill LevittHonorary Consultant in Paediatric Oncologyand Late [email protected]

The Leeds Teaching Hospitals NHS TrustDr Adam GlaserConsultant Paediatric & Adolescent [email protected]

Geraint HughesService Improvement [email protected]



Royal Alexandra Children'sHospital (Brighton)Dr Anne DavidsonConsultant [email protected]

Karen BashfordClinical Nurse Specialist for Long TermFollow Up Oncology Day [email protected]

Sheffield Teaching Hospitals NHSFoundation TrustDr Diana GreenfieldNurse [email protected]

The Royal Marsden NHS FoundationTrust (RMH)Dr Mary TajConsultant Paediatric [email protected]

Shyama PersaudSurvivorship Project [email protected]

University Hospitals Bristol NHSFoundation TrustDr Rachel CoxConsultant Paediatric [email protected]



When a childhood cancer survivor came to me

with thyroid problems, I found a wealth of

information on the treatment summary and

care plan which enabled me to treat the patient

appropriately. Also, I enclosed this document with

the referral letter to the hospital consultant.”

“

GP

National Cancer Action Team (2010). Quality in NursingClinical Nurse Specialists in Cancer Care; provision,proportion and performance - A census of the cancerspecialist workforce in England,National Cancer ActionTeam.

RCN Competences: an integrated career andcompetence framework for nurses working in the field oflong term follow up and late effects care of children andyoung people after cancer, (2011). Royal College ofNursing, London

Think Transition Developing the essential link betweenpaediatric and adult care (2008). The Royal College ofPhysicians of Edinburghwww.rcpe.ac.uk/clinical-standards/documents/transition.pdf

Transition: getting it right for young people. (2006),National Service Framework for Children, Young Peopleand Maternity Services Department of Health, London

References

SECTION EIGHT:



NHSNHS Improvement

HEART

LUNG

CANCER

DIAGNOSTICS

STROKE

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PublicationRef:IMP/comms024-October2011

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