NHSCANCER                                                 NHS Improvement                                                 ...
This publication is the fifth in a series of National Cancer SurvivorshipInitiative (NCSI) Children and Young People publi...
Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence   3ContentsBackground ...
4     Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence      Background ...
Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence      5The following pr...
6     Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence      “      It h...
Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence        7SECTION ONE:In...
8     Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence           Progre...
Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence   9“The survivorship p...
10    Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence      SECTION TWO...
Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence   11Children and young...
12    Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence              Pae...
Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence   13act located at HUB...
14    Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence            Teena...
Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence         15ed surveilla...
16    Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence            Teena...
Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence        17ted surveilla...
18    Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence      Models of c...
Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence   19Entry into long te...
20    Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence      Clinical le...
Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence        21Evidence-base...
22    Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence      Transition ...
Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence   23                  ...
24    Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence      “      Risk...
Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence   25Demonstrated evide...
26      Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence     Key points...
Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence            27Key point...
28      Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence     Key points...
Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence           29Key points...
30      Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence     Key points...
Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence           31Key points...
32       Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence     Key point...
Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence          33Key points ...
34      Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence     Key points...
Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence          35Health econ...
36    Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence      Costs of di...
Designing and implementing pathways to benefit patient aftercare: Continuing to build the evidence
Designing and implementing pathways to benefit patient aftercare: Continuing to build the evidence
Designing and implementing pathways to benefit patient aftercare: Continuing to build the evidence
Designing and implementing pathways to benefit patient aftercare: Continuing to build the evidence
Designing and implementing pathways to benefit patient aftercare: Continuing to build the evidence
Designing and implementing pathways to benefit patient aftercare: Continuing to build the evidence
Designing and implementing pathways to benefit patient aftercare: Continuing to build the evidence
Designing and implementing pathways to benefit patient aftercare: Continuing to build the evidence
Designing and implementing pathways to benefit patient aftercare: Continuing to build the evidence
Designing and implementing pathways to benefit patient aftercare: Continuing to build the evidence
Designing and implementing pathways to benefit patient aftercare: Continuing to build the evidence
Designing and implementing pathways to benefit patient aftercare: Continuing to build the evidence
Designing and implementing pathways to benefit patient aftercare: Continuing to build the evidence
Designing and implementing pathways to benefit patient aftercare: Continuing to build the evidence
Designing and implementing pathways to benefit patient aftercare: Continuing to build the evidence
Designing and implementing pathways to benefit patient aftercare: Continuing to build the evidence
Designing and implementing pathways to benefit patient aftercare: Continuing to build the evidence
Designing and implementing pathways to benefit patient aftercare: Continuing to build the evidence
Designing and implementing pathways to benefit patient aftercare: Continuing to build the evidence
Designing and implementing pathways to benefit patient aftercare: Continuing to build the evidence
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Designing and implementing pathways to benefit patient aftercare: Continuing to build the evidence

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This is the fifth in a series of publications from the NCSI CYP workstream. This publication draws together the evidence so far from the NHS teams testing the concepts of alternative modelsof aftercare for children and young people living with and beyond cancer and provides the initial evidence to help to support the commissioning of effective aftercare services in the future
(Published October 2011)

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

  1. 1. NHSCANCER NHS Improvement CancerDIAGNOSTICS Children and young people living with and beyond cancerHEART Designing and implementing pathways to benefit patient aftercare:LUNG Continuing to build the evidenceSTROKE
  2. 2. This publication is the fifth in a series of National Cancer SurvivorshipInitiative (NCSI) Children and Young People publications (October 2011)
  3. 3. Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence 3ContentsBackground to the Children and Young People Workstream 4Section 1Introduction and purpose of this publication 7Section 2A summary of the overall evidence 10Part 1• Children and young people aftercare pathways 12Part 2• Models of care 18Part 3• Entry into long term follow up 19• Clinical levels of care 20• Evidence-based risk stratification of survivors 21• Transition 22Part 4• A summary of evidence from the children and young people 25 testing and prototyping (October 2011)• Health economic evaluation to support models of care 35• Patient experience 38• Nurse competence 40Section 2The ten key principles and recommendations 42Section 4Steps to spread and implementation 44Section 5National Cancer Survivorship Initiative Children and Young 47People Workstream - Expectations 2012-2015Section 6Establishing and embedding the foundations: The key messages 49Section 7Contacts 51Section 8References 54 www.improvement.nhs.uk/cancer
  4. 4. 4 Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence Background to the children and young people workstream The National Cancer Survivorship Initiative (NCSI) evolved The CYP workstream is made up of key stakeholders from the Cancer Reform Strategy (2007). The NCSI was nationally these include representatives from: launched in September 2008 and is a partnership between the Department of Health, Macmillan Cancer • Young People Cancer Survivors Support and NHS Improvement. • Lead Cancer Clinicians • Cancer Networks The Children and Young People (CYP) workstream is one • Cancer Charities including MacMillan UK, of seven workstreams conducting improvement work as CLIC Sargent and Teenage Cancer Trust part of the NCSI. The aim of this national initiative is to • Primary Care improve models of aftercare provided for those patients • Department of Health surviving cancer, many of whom will need a range of clinical and non-clinical services to enable each of them The CYP workstream has over the past 30 months tested to live a happy, healthy normal life after their initial and prototyped models of care within both clinical and treatment for cancer. The NCSI national steering group non-clinical services. provides the links to other workstreams across the initiative. There are ten national test sites involved in the CYP workstream. These test sites were the result of There are over 40,000 survivors of childhood cancer in successful expressions of interest (in February 2009) from the UK with 60% of childhood cancer survivors nine cancer treatment centres and one cancer charity. experiencing at least one adverse late effect of cancer treatment. It has also been reported that 50% of • The Leeds Teaching Hospitals NHS Trust survivors of childhood cancer patients are ‘lost to follow • The Christie NHS Foundation Trust up’. The follow up for aftercare services for CYP cancer • Birmingham Childrens Hospital NHS survivors varies nationally but is predominately clinician Foundation Trust led at a Principal Treatment Centre (PTC). With the • Sheffield Teaching Hospitals NHS Foundation Trust exponential increase in the number of young adult • University Hospitals Bristol NHS Foundation Trust cancer survivors - strategies and a change in the • The Royal Marsden NHS Foundation Trust (RMH) philosophy of a single model of care to a more holistic • Great Ormond Street Hospital for Children model is needed. NHS Trust (GOSH) • Cambridge University Hospitals NHS One of the key drivers for CYP follow up comes from The Foundation Trust National Institute of Clinical Excellence (NICE) CYP • Royal Alexandra Childrens Improving Outcomes Guidance (IOG). These guidelines Hospital (Brighton) address the care of children and young people diagnosed • CLIC Sargent with cancer up to the age of 25 years. This spans the care of children and young people across paediatric, adolescent, and adult health care services.www.improvement.nhs.uk/cancer
  5. 5. Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence 5The 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 of aftercare: • Clinician led • Professionally led shared care including secondary and primary care • Nurse led, including telephone and postal follow up • Supported self management• Developing a safe risk stratification framework and identifying those patients at low, medium and high risk as a consequence of late effects following surgery, chemotherapy and radiotherapy treatment.• Non clinical support issues have been identified and aftercare models to support these issues have been tested. These include psychosocial support, and support for returning to education and employment through a variety of practical resources: websites, survivorship education programmes, fertility education and the importance of exerciseDuring the testing and prototyping work, and particularlyin building the ongoing evidence, the improvement The practical case studies documenting the improvementundertaken took into account the Quality, Innovation, work from the nine project sites will be published inProductivity and Prevention (QIPP) agenda and the March 2012 and examples of the work will be displayedimportance of aligning, where possible, the evidence as part of the market place on 12 October 2011 in orderpresented to the key elements of QIPP. to complement and launch this publication of evidence.This publication is a brief overview of the testing and Further information and access to our earlier publicationsprototyping evidence for the nine clinical test sites can be found on our website at:nationally who have participated in this initiative. www.improvement.nhs.uk/cancer www.improvement.nhs.uk/cancer
  6. 6. 6 Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence “ 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 ”www.improvement.nhs.uk/cancer
  7. 7. Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence 7SECTION ONE:Introduction and purposeof this publicationWelcome to the fifth in a series of publications from the Notes to the readerNCSI CYP workstream. These publications have charted To ensure that a succinct, robust summary of informationboth the progress and captured the improvement work has been provided, a number of commissioners fromand methodology in the form of practical case studies. across the country were invited to critique and comment on the practicality of the evidence gathered so far fromThis publication draws together the evidence so far from their perspective. Their feedback has been invaluable andthe NHS teams testing the concepts of alternative models we are extremely grateful for their time and expertise.of aftercare for children and young people living with Their comments, queries and thinking will provide a basisand beyond cancer and provides the initial evidence to for the ongoing work to refine the evidence and data byhelp to support the commissioning of effective aftercare March 2012.services in the future. Finally, we hope you will find this publication informativeThe learning and experience from the testing and and useful as a summary of evidence from our NCSI CYPprototyping work, presented in this publication, provides test sites up to October 2011. Without the continuingthe tangible evidence of why such models of care should commitment of our patient cancer survivors, our clinicalbe commissioned and adopted by teams locally across leads and everyone supporting the testing and prototypethe country. teams it would not have been possible to produce this publication. We owe them huge thanks andHowever, this is ongoing work and from October 2011 appreciation for their commitment.until the end of March 2012 the evidence will continueto be refined and presented at a national conference onthe 28 March 2012. Professor Faith Gibson Patricia Morris Co-chair of the NCSI CYP NHS Improvement Director,In section 2 of this publication, the initial findings have Steering Group Cancerbeen included from a financial modelling exercise inorder to begin to understand the effects on an Dr Gill Levitt Judi Tapporganisation by implementing an alternative method of Co-chair of the NCSI CYP NHS Improvement, Steering Group National Improvement Leadaftercare. 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. www.improvement.nhs.uk/cancer
  8. 8. 8 Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence Progress and outcomes Progress timeline and outcomes - March 2009 to October 2011 MARCH 2010 Testing phase involving the feasibility of alternative models of care involving 10 centres, treating children and young people with cancer and delivering after care services, from across the country SEPTEMBER 2010 Four models of aftercare developed and articulated with supporting evidence of why they should be commissioned SEPTEMBER 2010 Produced risk stratification evidence to support the clinical safety and acceptability of the four models of care proposed SEPTEMBER 2010 Defined three aftercare pathways for children and young people following extensive consultation with patients, carers, health professionals and national charities SEPTEMBER 2010 Developed a prototype treatment summary and care plan for all patients living with and beyond cancer to inform patients and health professionals throughout their lives OCTOBER 2010 Developed a set of quality indicators to inform the delivery of aftercare services and drive up the quality of care delivered consistently across the country OCTOBER 2010 Commissioned and extracted evidence from a financial modelling exercise undertaken by The York University Health Economics Consortium OCTOBER 2010 Completed an interactive patient experience evaluation initiated to ensure our proposals and recommendations are in line with patient and carer needs, expectations and individual concerns OCTOBER 2010 Developed a set of recommendations for commissioners and other health professionals to support, inform and influence the decision- making of specific aftercare models of care MARCH 2009 - Actively engaged, consulted and worked directly with a wide range OCTOBER 2010 of health professionals to ensure that the proposals and recommendations will be clinically safe, appropriate, feasible and cost effective throughout this initiativewww.improvement.nhs.uk/cancer
  9. 9. Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence 9“The survivorship programme helped me in manyways. Primarily, it gave me a better understandingof what help was available after having cancer, aswell as being able to use the folder as a handbookto refer to short and long term. It also gave mevital contacts to get in touch with which reallyhelped a lot and on the whole I think it’s a ”brilliant idea!A cancer survivor www.improvement.nhs.uk/cancer
  10. 10. 10 Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence SECTION TWO: Summary of the overall evidence This section provides a summary of the range of Overall context evidence drawn together so far and is divided into In view of the expected exponential increase in the four parts: number of cancer survivors in the UK, the current levels of aftercare provision will not be sustainable in the PART ONE: future. Therefore, the status quo is not an option. An outline of the three standardised CYP patient pathways’ that demonstrates consistent care In terms of cost, there is the potential to save a minimum throughout patient aftercare services. of £3.25 million nationally over the next five years by applying safe risk stratified pathways (and the four PART TWO: models of care that emerge from the pathways) for A synopsis and breakdown of four ‘best practice’ children and young people cancer survivors. standard models of care that have emerged from the testing work and aligned to the three The models of aftercare standardised pathways. The ten working principles and recommendations which have been outlined, although at this stage are focused PART THREE: on cancer, can easily be transferred to other children and The associated evidence relates to the following young people services for those patients needing key points of the pathway: continuing care for long term conditions. The building of clinical evidence and knowledge learned may be also • Entry into long term follow up applicable to adult cancer survivors. • Clinical level of care • Evidence-based risk stratification of survivors The intention of this section is to provide the evidence of • Transition why these models of aftercare pathways and recommendations should be provided and accessible to PART FOUR: all patients surviving cancer or needing aftercare services • A summary of evidence from the children and following their acute episode of cancer. young people testing and prototyping (October 2011) The pathways, models of aftercare and ten working • Health economic evaluation to support principles are recommended by the NCSI CYP based on models of care the evidence that has emerged from the testing work as • Patient experience a “national standard” for all CYP centres across the • Nurse competence country that they can adapt locally to fit in with local circumstances, priorities and needs.www.improvement.nhs.uk/cancer
  11. 11. Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence 11Children and young people aftercare pathwaysThe 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. www.improvement.nhs.uk/cancer
  12. 12. 12 Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence Paediatric aftercare pathway Care co-ordinator conta Rapid re-entry for re symptoms (r Oncology Change in late relapse/SMN effects profile Treatment Risk assessment Diagnostic Aftercare Entry into long including psychosocial and treatment MDT term aftercare assessment care MDT planning Treatment Care plan summary including assigned level of care IT system IT system populated populated Pathway is followed in conjunction with agreed protocols and guidelines Frequency of foll Pathway Clinical and psychological care Treatment summ Transition Planning and level of care **There is a flexib CYP survivors from IT Systems TREATMENT PATHWAYwww.improvement.nhs.uk/cancer
  13. 13. Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence 13act located at HUB PTC lapse, questions/advice/and newrelating to late effects) and SMN MDT at any point along the pathway review Refer to palliative care pathway Aftercare planning and model of care Regular follow up Early and review of care plan adolescent review (locally Patient and parent defined) education and psychological support Clinical level of care MDT review Tests and review Consultant **Transition Referral to at 16-18 years Clinical nurse specialist clinic to young specialist as required adult services Shared care local hospital **Transition at 24-25 years to adult servicesow-up is determined by level of risk The title of the pathway relates to the age of diagnosisary and care plan is a living document to be updated at any event across the pathwaybility with age range of transition (transition relates to purposeful and planned movement ofm child and young adult to adult services) www.improvement.nhs.uk/cancer
  14. 14. 14 Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence Teenage and young adult aftercare pathway Level 1 and 2 supported self management and planned coordinated care pathways Care coordinator function and automate Rapid re-entry for relapse symptoms (relat at a Relapse - Change in late oncology/SMN effects profile Treatment Risk assessment Diagnostic Aftercare Entry into long including psychosocial and treatment MDT term aftercare assessment care MDT planning Treatment Care plan summary including assigned level of care IT system IT system populated populated Pathway Clinical and psychological care Frequency of follow-up is determined b Transition Planning and level of care ***There is flexibility to transfer throu Both level 1 and 2 supported self mana IT Systems Level 2 planned coordinated care Treatment summary and care plan is a TREATMENT PATHWAYwww.improvement.nhs.uk/cancer
  15. 15. Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence 15ed surveillance system by HUB PTCe, questions/advice/and newing to late effects) and SMN MDTny point along the pathway review Refer to palliative care pathway Aftercare planning and model of care Regular follow up and review of care plan MDT Patient and parent education review and psychological support Clinical level of care **Transition at 16-18 years Tests and review Consultant to young (level 2 only) adult services CNS +/- **Transition telephone Referral to specialist at 24-25 years follow up clinic as required to adult Shared care services local hospital Survivorship programmes ***Transfer GP (>18) to level 1, 2 or 3 Self pathway management Exercise programmesby level of risk **There is a flexibility with age range of transition (transition relates to purposeful and planned movement of CYP survivors from child and young adult to adult services)gh levels of care on the pathways Level 2 planned coordinated careagement and planned coordinated careliving document to be updated at any event across the pathway The title of the pathway relates to the age of diagnosis www.improvement.nhs.uk/cancer
  16. 16. 16 Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence Teenage and young adult aftercare pathway Level 3 complex care Care coordinator function and automat Rapid re-entry for relaps symptoms (relat at a Relapse - Change in late oncology/SMN effects profile Treatment Risk assessment Diagnostic Aftercare Entry into long including psychosocial and treatment MDT term aftercare assessment care MDT planning Treatment Care plan summary including assigned level of care IT system IT system populated populated Pathway Clinical and psychological care Frequency of follow-up is determin Transition Planning and level of care ***There is flexibility to transfer th Treatment summary and care plan IT Systems TREATMENT PATHWAYwww.improvement.nhs.uk/cancer
  17. 17. Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence 17ted surveillance system by HUB PTCse, questions/advice/and newting to late effects) and SMN MDTany point along the pathway review Refer to palliative care pathway Aftercare planning and model of care Regular follow up and review of care plan MDT Patient and parent education review and psychological support Clinical level of care **Transition at 16-18 years Tests and review Consultant to young with adult services automated surveillance **Transition as required Referral to specialist at 24-25 years clinic as required to adult services Survivorship programmes ***Transfer to level 1 or 2 Exercise programmes pathwayned by level of risk **There is a flexibility with age range of transition (transition relates to purposeful and planned movement of CYP survivors from child and young adult to adult services)hrough levels of care on the pathwaysis a living document to be updated at any event across the pathway The title of the pathway relates to the age of diagnosis www.improvement.nhs.uk/cancer
  18. 18. 18 Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence Models of care The consultant led model Traditionally, follow up and aftercare for cancer patients have been provided by medical consultants which may be within a tertiary treatment centre. However, with the exponential increase in the number of young adult cancer survivors, as well as supporting patient choice and the need to repatriate patients back to their local hospital as early as possible, this model of care may no longer be viable, sustainable or appropriate. In order to overcome this, alternative models of follow up care have been developed and prototyped. The shared care model The shared care model is a professionally led shared care pathway with a clinical specialist and clinician at a local hospital or GP in the community in conjunction with a clinician at the Principal Treatment Centre (PTC). The care coordinator function is vital to the success of this model by identifying and providing the best clinical care for the survivor. The nurse led model The nurse led model may include a face to face clinic appointment, telephone follow up or postal follow up. This model of care is proving very beneficial particularly with patients transitioning from young adult to a late effects or adult services. The supported self management model The supported self management model gives the survivor the ability to actively participate in their follow up care therefore empowering the patient and building confidence so the patient has the ability to make decisions concerning their recovery within a supported environment. Care coordination, treatment summary and care planning and remote monitoring / recall systems are vital for this model to be ‘best practice’. Survivors need and require robust stable systems in place to allow for rapid re-entry back into the survivorship pathway at any juncture.www.improvement.nhs.uk/cancer
  19. 19. Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence 19Entry into long term follow upThe 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. www.improvement.nhs.uk/cancer
  20. 20. 20 Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence Clinical levels of care With the rapidly enlarging cohort of survivors it is points along the patient pathway resulting in a level of becoming vital to look for different models to provide care being assigned. appropriate care. Risk stratification using levels of care is essential to inform patient pathways and provide the Within the Children’s Cancer Leukaemia Group (CCLG) basis for effective follow up models. late effects section, a group published defined levels of care as a means of developing strategies for long term Survivors of cancer may also develop chronic conditions, follow up in this expanding population of survivors. so the use of the chronic disease models for different levels of care fits well with the idea that levels of care can These levels were supported by an earlier publication be stratified by risk of developing conditions or requiring updated in 2005 entitled “Therapy based long term on going management. follow up: Practice Statement” by Skinner R, Wallace WHB, Levitt GA, eds. United Kingdom Children’s Cancer Risk stratification is based on: disease; type of treatment; Study Group, 2005. (This publication is available online gender; age; and psychosocial needs. These effect the at: www.ukccsg.org.uk/public/followup/PracticeStatement) patient at the time of treatment and at certain time LEVEL 1 Characteristics may include: • No routine outpatient attendances • Information on prescription and/or an educational intervention • Automated surveillance tests with results by telephone or post • Ability to re-access system with/without LEVEL 1 reference to GP LEVEL 2 Characteristics may include: • Planned review of care e.g. hospital, LEVEL 2 community, face to face or telephone • Clinical examination if required • Patients with co-morbidities • Those who are unable/decline to LEVEL 3 self manage LEVEL 3 Characteristics may include: • Complex rapidly changing health • Complex treatment complications or symptomatic needs • Complex ongoing treatment regimes • Other input required e.g. cardiology, haematology, gastroenterology • Requiring regular MDT reviews Potential model of care being testedwww.improvement.nhs.uk/cancer
  21. 21. Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence 21Evidence-based risk stratification of survivorsThe 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.ukObjectivesThe 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 how The empirical risks of serious adverse health outcomes inthis risk compares with that expected. relation to the modified Wallace level proposed by the NCSI-CYP workstream have been provided. In terms ofFor cancers other than leukaemia, although the safety concerns relating to LEVELS 1 and 2, who do notallocation into the modified Wallace levels was based on receive hospital-based follow up, this initial investigationrudimentary treatment information, there is again good provides reassurance that the risk of death from causesdiscrimination between groups of survivors in terms of other than recurrence and subsequent primary neoplasmtheir risks by 30 years from diagnosis. From the safety is low in absolute terms. The pattern of risk for seriousperspective, again the risks of death from non-neoplastic non-fatal non-neoplastic adverse health outcomes needscauses are low in absolute terms for LEVELS 1 and 2 at further investigation, which is underway, but in broad1.5% and 1.6%, respectively, by 30 years from diagnosis. terms this initial investigation provides evidence thatAgain, It is now being investigated how this risk proposed LEVELS provide clear and strong discriminationcompares with that expected. in terms of risk. www.improvement.nhs.uk/cancer
  22. 22. 22 Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence Transition Transition is a key component of the survivorship journey Best practice evidence suggests that the next steps to empower young people as they become responsible must include the following: for making their own health care decisions. CYP survivors are assessed and prepared at different time points across the pathway for transition to adult services. Create a description of transition services that Transition has been defined as “a purposeful, planned can be adapted locally and ‘fit’ with local process that addresses the medical, psychological and resources and geographical requirements educational/vocational needs of adolescents…with chronic illness as they move from a child centred to adult Establish clear transition policies/procedures/ oriented health care system” (Department of Health, guidelines for Health Care Professionals (HCP) 2006). Establish clear guidance for adolescents who There is no definitive age for transition as this is driven by will transition to adult services – identifying the individual needs of the patient. However, it should who is responsible for care be flexible, carefully planned and happen as soon as it is safe and appropriate to do so based on the needs of the Promote good practice as identified by the patient. Clinical nurse specialists (CNS) play a key role in transition care models already established transition by assessing the emotional and psychological readiness of the young person to take more responsibility Identify inequalities especially services in for their own care, and develop appropriate remote areas and deliver appropriate support individualised interventions to support them to do so. They also work with other agencies to develop clear Continue to monitor and assess outcome pathways and guidelines for the transfer of long term measures for new and existing models of follow up care between services (RCN Competences transition 2011) Develop appropriate training resources for Although transition clinics are being conducted at some HCPs across the models of care which include Principal Treatment Centres (PTC) there is no consistency transition nationally. Adapted from Think Transition – Edinburgh (2008)www.improvement.nhs.uk/cancer
  23. 23. Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence 23 www.improvement.nhs.uk/cancer
  24. 24. 24 Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence “ 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 ”www.improvement.nhs.uk/cancer
  25. 25. Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence 25Demonstrated evidence that takes into accountthe core elements of the QIPP agendaThe following evidence has been sourced through anumber of data collection methods which include: Audits Surveys with stakeholders York Health Economic Consortium exercise Patient Interviews - patients/carers/ Consultation processes with health care satisfaction Health Care Professional professionals, patient representatives, Department surveys of Health and commissioners Delphi Psychosocial evaluation Comparison of accuracy of data received from GPs questionnaire tools from Hospital Episode Statistics (HES) and requirements analysis Focus groups/ Post code/demographic Shadow monitoring workshops/ audits education events Additional qualitative data to support the evidence can be found on page 38-39 www.improvement.nhs.uk/cancer
  26. 26. 26 Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence Key points across the Why is it important? Aligned with key What is the evidence? Summaries of evidence CYP aftercare elements of the QIPP agenda can be sourced from the test site contacts in pathway section 7 Care coordinator This function is important to streamline and A long term follow up administrator fulfilling function coordinate survivor aftercare of clinical and the function of a care coordinator, is an non-clinical services and to ensure the effective conduit for receiving enquiries and patient is seen by the appropriate person. where necessary, triaging them in a streamlined This role could be a clinical or non-clinical manner to the appropriate member of the person as appropriate and be clinical team. (GOSH) interchangeable along the pathway. There are cost benefits if this function is carried out by an administrator, when appropriate rather than by clinical staff. (Productivity) Potential to reduce the number of patients lost to follow up. (Quality) Automated Lack of a reliable recall system in a mobile GPs have indicated that they have the ability to surveillance and population of patients impacts on patient recall patients for annual tests, but felt the re-call systems safety. (Quality) responsibility sits with the PTC as currently there is no reliable system being available for recall. (Birmingham) Rapid re-entry into Pathways can be accessed at any point on Data shows that 9 patients have safely re- the pathway the pathway reducing the need for entering the pathway. (Birmingham) emergency admission, late relapse and prevention and/or exacerbation of late There was general consensus from professionals effects with the consequent costs. There are on the need for open access for survivors to cost benefits attached to a streamlined obtain advice. (Bristol) access process. (Quality, Productivity, Prevention) Treatment summary and care plan with contact details provides patient support with clear lines of re-entry into the system as necessary. (Birmingham) Treatment summary Provides base line patient treatment Data from the prototypes site (6 months of data and care plan summary & care plan information to collection) demonstrates 94% patients with a support self management. This may lead to treatment summary. 99% of patients had or reduced cost of after care. Promotes were issued with a care plan; this number has sharing of information between health increased over the testing period. (NHS professionals (importantly GPs) and provides Improvement) the survivors with a comprehensive summary throughout their aftercare 88% of parents, 83% of the young people and journey. (Quality, Productivity, 94% of the shared care doctors felt that the Prevention) TS/CP was useful to them. (GOSH/Christie) 90% of GPs reported the TS/CP information had a high level of acceptability. (GOSH/Christie) There is professional acknowledgement of importance of treatment summaries. (Bristol)www.improvement.nhs.uk/cancer
  27. 27. Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence 27Key points across the Why is it important? Aligned with key What is the evidence? Summaries of evidenceCYP aftercare elements of the QIPP agenda can be sourced from the test site contacts inpathway section 7Aftercare To inform care planning and aftercare Clinical audit tool provides information tomultidisciplinary clinical decision-making. NICE IOG inform the prioritisation for patients for MDTteam (MDT) compliance. (Quality, Productivity, discussion. (Bristol) Prevention)Entry into long term Meets NICE Guidance requirements. Data from economic analysis indicates that theaftercare Provides continuity of care throughout the pilot sites have the following caseload levels: life of a patient. For example, the monitoring of late effects; and supports Leeds: 909 patients return to a ‘normal life’ after their GOSH: 1,263 cancer, including the management of the Bristol: 421 consequences of treatment. (Quality, Birmingham: 635 (York HE) Prevention) Continued long term follow up facilitates earlier diagnosis of silent problems, such as hypertension, cardiomyopathy, and adult growth hormone deficiency. (Bristol)Risk stratification Risk stratification is essential for the safe Initial investigation provides evidence that clinical care of patients to inform levels of proposed levels of care provide clear and strong care, patient pathways and effective discrimination in terms of risk. (Risk aftercare models to meet individual needs. stratification exercise led by The University Appropriate levels of after care produces of Birmingham, Professor Mike Hawkins) cost benefits & enhanced productivity. (Quality, Innovation, Productivity, Professional consensus on the need for risk Prevention) based plan for follow up after assessment at specialist aftercare service. (Bristol) Following the initial risk assessment the complexity of patient need should influence the location of their aftercare. (Bristol) www.improvement.nhs.uk/cancer
  28. 28. 28 Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence Key points across the Why is it important? Aligned with key What is the evidence? Summaries of evidence CYP aftercare elements of the QIPP agenda can be sourced from the test site contacts in pathway section 7 Psychosocial Survivors should be assessed and provided The initial findings indicate the following: assessment with the necessary psychosocial intervention at points along the pathway. This is better The psychosocial screening tool can be used for patients and has the potential to prevent across the patient pathway as a repeated exacerbation of problems and more costly measure, which will provide a better patient interventions. (Quality, Innovation, experience as it will allow provision of the right Productivity, Prevention) level and amount of care. There will be a preventative impact in terms of severity of problems, as they will be picked up earlier, which will overall improve the patient’s quality of life. Using the screening tool and the accompanying action plan will allow the patient to ask for help or indicate they would like help, which will allow quicker access to the referral pathway. The screening tool does not need a qualified mental health professional to administer it. This may reduce the need for specialised staff to implement the tool making it accessible and easy to use. (RMH) A study involving patients and their parents. There is some evidence that structured psychological support would be helpful to get some young people back on track once the treatment phase is over. Though some seem to escape relatively intact, the quality of life of others has been severely compromised, socially, occupationally and aspirationally. (Cambridge) Models of care Risk stratified models of aftercare need to Defined principles of late effects model of care meet the clinical requirements of individual – principles can be found in section 3 patients; they need to be effective and Robust case studies demonstrating effectiveness interchangeable along the pathway. They of Models of Care in a series of previous CYP need to be accessible, locally based where publications (NHS Improvement) possible and allows for patient choice. (Quality, Innovation, Productivity, Prevention)www.improvement.nhs.uk/cancer
  29. 29. Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence 29Key points across the Why is it important? Aligned with key What is the evidence? Summaries of evidenceCYP aftercare elements of the QIPP agenda can be sourced from the test site contacts inpathway section 7Clinical levels of care With the exponential increase of survivors Confidence in professionals ranked as the mostcomprising: of childhood cancer the traditional model of important factor in choice of location for follow clinician led care is no longer viable up. (Bristol) Appropriate level of care is important to meet patient need and choice safely and Standardised pathways and proposed models of cost-effectively. (Quality, Innovation, care have been clinically validated by the Risk Productivity, Prevention) Stratification Exercise. (Risk Stratification exercise led by The University of Birmingham, Professor Mike Hawkins) The number of patients risk stratified to appropriate models of aftercare demonstrates the effectiveness of this framework. (Leeds, Birmingham, GOSH, Bristol)Clinician led Estimates indicate that the number of survivors will rise over the next twenty years, leading to increased costs. See future cost estimates in York HE summary below)Nurse led 75% of patients value the nurse led clinic. Survivors were generally satisfied with the quality of information received and the manner in which it was communicated. (GOSH/Leeds) More than ¾ of the young people (78%) found it easy to discuss issues with the nurse and 75% understood their treatment and late sequelae. (GOSH) 97% agreed or strongly agreed that they were happy to see the specialist nurse for their clinic appointment and that they would be happy to return to the clinic for continuing follow up. (Birmingham) The verbal and written information received was appropriate and clearly explained for 97% of respondents and 68% of patients would prefer to attend for a Nurse-led appointment rather than a consultant-led clinic. (Birmingham) www.improvement.nhs.uk/cancer
  30. 30. 30 Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence Key points across the Why is it important? Aligned with key What is the evidence? Summaries of evidence CYP aftercare elements of the QIPP agenda can be sourced from the test site contacts in pathway section 7 Professionally led The Pan-Thames survey included three primary shared care treatment centres, GOSH, UCLH, RMH with 22 Paediatric Oncology Shared Care Units (POSCU) in the north Thames area and 20 POSCUS in south Thames region. There was overwhelming support from the centres who answered the questionnaire. All centres would provide Level 1 surveillance and many where able to provide investigations to level 2 patients (e.g. ECHOs). (GOSH) Providing a local service in Brighton, reduces travel time and costs to patients who would otherwise have to travel to St Georges, therefore reducing time off work/school. (Brighton) Supported self GP follow up service results indicate an overall management willingness from primary care physicians to partake in annual (or preferably less frequent) health questionnaires on behalf of their patients. 94% were happy to complete a health-related questionnaire, 90% felt the questionnaire was an appropriate length and 59% indicated that they would be happy to complete the questionnaire on an annual basis. (Birmingham) Results of a three month GP shadow pilot demonstrated 78% of patients were identified as suitable for supported self management. (Leeds)www.improvement.nhs.uk/cancer
  31. 31. Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence 31Key points across the Why is it important? Aligned with key What is the evidence? Summaries of evidenceCYP aftercare elements of the QIPP agenda can be sourced from the test site contacts inpathway section 7Aftercare planning To provide individual & responsive care it 65% of GPs were willing to arrange aftercareRegular aftercare and needs to be delivered in the most examinations & monitoring. (Leeds)review of care plan appropriate location and provided by the most appropriate model of care. (Quality, The Birmingham GP aftercare results as shown Productivity, Prevention) on the previous page “Patient Travel Survey” demonstrates that there is a cost benefit in travel time and money (70% less in cost & distances travelled) if patients attended locally based aftercare services rather than traditionally attending clinics at the PTC. (Brighton) A post code analysis demonstrates that 70% of survivors were willing to travel 60 minutes for a follow up clinic. (Bristol) Recalling patients using GP systems is not difficult, the number of cancer survivors transferring back to primary care could be very small per GP surgery therefore GP systems could be used as a tool for recalling for surveillance testing. (GOSH)Patient and parent Non clinical aspects of care are essential to A contact card for direct access to Careeducation and support survivors to live as normal a life as coordinator / HCP and website informationpsychological support possible after the effects of cancer have been developed to support and inform treatment and the associated late effects. long-term survivors by the provision of (Quality, Innovation, Prevention) supplementary information to that already provided in the clinical setting. Website data shows 635 hits over the past 6 months since its inception. (GOSH) Information provided to patients attending clinic show many patients received information on more than 1 subject. On average: level 3 = 2.8 subjects Level 2 = 2.7 subjects Level 1 = 2.2 subjects With more than 12% of Level 2 & 17% of Level 3 patients identified unmet needs related to psychology. (Bristol) www.improvement.nhs.uk/cancer
  32. 32. 32 Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence Key points across the Why is it important? Aligned with key What is the evidence? Summaries of evidence CYP aftercare elements of the QIPP agenda can be sourced from the test site contacts in pathway section 7 Results of tests and See point on the pathway – clinical models Twice as many investigations are needed for review with patients by of care Level 3 patients versus Level 2 patients. The health professionals needs of Level 2 patients are not inconsequential when compared to Level 1 - indicating resource implications. (Bristol) 65% of GP’s are willing to organise certain follow up examinations and Investigations. (Leeds) 77% of GPs were happy to perform routine toxicity monitoring on patients (including annual BP and urinary protein: creatinine ratio) only 53% had the ability to recall patients for these annual tests. (Birmingham) Referral to specialist Early intervention / prevention could avert Review of fertility services shows marked clinic as required more costly care if undetected conditions improvement in referral to reproductive are left untreated. medicine and discussion of fertility options. (Cambridge) Follow up services need to be accessible to provide survivors with the right information Thyroid disease is common amongst survivors of to make informed decisions related to the childhood malignancy and is reported by 12.4% late effects of treatment and access the of subjects in the BCCSS. (Birmingham) appropriate specialist clinics at the appropriate time along the survivorship Growth hormone deficiency was less likely to be pathway. (Quality, Productivity, diagnosed in survivors not on follow up (18.2% Prevention) vs 6.6%) and survivors were less likely to receive growth hormone replacement if they were not being followed (17.1% vs 5.6%). (Birmingham) Twice as many investigations are needed for level 3 patients versus level 2 patients. (Bristol) Implementing five yearly follow up appointment, with necessary investigations e.g. echocardiograms performed on the same day, reduces unnecessary appointments. (Birmingham)www.improvement.nhs.uk/cancer
  33. 33. Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence 33Key points across the Why is it important? Aligned with key What is the evidence? Summaries of evidenceCYP aftercare elements of the QIPP agenda can be sourced from the test site contacts inpathway section 7Survivorship To enable patients to live as full and normal There is early indication that positive changesprogrammes a life as possible by providing them with have resulted for attendees of survivorship resources and information to help support programmes six months after attending the and manage their after effects following course: Improvement in anxiety scores 52%; their cancer treatment. (Quality, Improvement in depression scores 53%; Innovation, Prevention) Improved body Image 60%; Social difficulties improved 63%. This data will be interrogated over a five year period to provide more long term findings. (Christie) The ‘On Target’ project currently under Component of the planned programme include development aims to develop a service advice on: model which will ensure TYA survivors are • Health risk assessment, surveillance and supported after a diagnosis of cancer and monitoring its treatment. (Quality, Innovation, • Healthy lifestyle and physical rehabilitation Productivity, Prevention) • Education, employment and finance, • Psychosocial and emotional wellbeing • Survivor information and peer support (Bristol)Exercise programmes Fatigue is a chronic problem for cancer An exercise DVD has been designed by survivors survivors – tailored exercise programs to for survivors. (Cambridge) improve physical function and mental wellbeing enable patients to return to an Value of exercise has been identified through effective quality of life after treatment for survivorship programmes. (Christie) cancer. This work has shown that this supports survivors returning to a normal life Initial pilot of exercise questionnaire suggests and employment - contributing to the little information is given by many specialists economy sooner than they may have been but that young people want this information. able to do so. (Quality, Innovation, Initial a review of 14 specialists (across Productivity, Prevention) paediatric oncology and adults) suggests a lack of knowledge / awareness of this information and this was thought to be due to physiotherapists, however, review shows an inadequate number of physios are able to provide this as an independent service. (Cambridge) www.improvement.nhs.uk/cancer
  34. 34. 34 Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence Key points across the Why is it important? Aligned with key What is the evidence? Summaries of evidence CYP aftercare elements of the QIPP agenda can be sourced from the test site contacts in pathway section 7 Transition at stages A seamless transition from paediatric care After patients have had a transition throughout the to young adult and again into long term appointment and no longer need hospital pathway aftercare is essential for all patients to surveillance; around 30% of patients could be provide effective continuity of care. discharged to primary care with regular Effective transfer has direct patient surveillance. (GOSH) benefits. (Quality, Productivity, Prevention) Extensive work by a team in Edinburgh has shown that an effective transition service requires an effective and proactive approach. Core principles that they have developed have been adapted and are referenced in section 2 - part 3www.improvement.nhs.uk/cancer
  35. 35. Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence 35Health economic evaluation tosupport models of careThe economic costs of cancer survivorship servicesfor children and young people – an examination of Costs to survivors and their familiesthe potential savings through risk stratification and Attending treatment, impact of late effectsthe adoption of new models of care on employment and fertilityYork 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. Other care costs Direct health costsThe requirements that survivors have vary from person to Local authority support, Primary, secondary andperson depending on the type of illness they have had voluntary sector community careand the treatment that they received during their acutephase.The full economic cost of cancer survivorship services for Data based on a Department of Health case note reviewchildren and young people includes a number of factors, provided a basis for estimating the costs of secondarysummarised below: care survivorship services. This found that the average cost per patient per year over five years was as follows:CostsThe starting point for this exercise was to ascertain and • Level 1: £63gather the procedures and costs of NHS childhood • Level 2: £115cancer survivorship services provided at the four pilot • Level 3: £162sites (Birmingham, Bristol, Great Ormond Street andLeeds). The following challenges were encountered:: In order to calculate a full economic cost of survivorship services, additional support costs of providing the service• Not all sites have easily accessible caseload and activity need to be included, such as capital costs, overheads and information administrative costs. Tariff costs have therefore been• Sites have different service models which are not easily used as a proxy cost measure in the absence of detailed comparable audit analysis of the costs of providing services at each• Follow up services are not commissioned separately level. On the basis of cost data obtained from one of our from other services (e.g. they may be part of an sites it has been found that this is approximately oncology contract) so cost information is difficult to equivalent to the cost of providing a consultant-led clinic obtain annually for each survivor. An average for consultant-led clinics has been calculated at £290, £200 for nurse-led clinics, £24 for telephone clinics and £20 for virtual review, whereby the secondary care team carries out an annual review of survivors, based on data provided by GPs. www.improvement.nhs.uk/cancer
  36. 36. 36 Designing and implementing pathways to benefit patient aftercare - continuing to build the evidence Costs of different models of care based on a caseload of approximately 900 survivors Without risk With risk-stratification Proposed new stratification (£) (current model) (£) care model (£) Clinic costs - Level 1 n/a 6,166 3,378 Clinic costs - Level 2 n/a 108,773 54,414 Clinic costs - Level 3 n/a 81,607 77,684 Total clinic costs 263,320 196,546 135,476 Investigations 43,500 43,500 43,500 Care-co-ordinator (Grade 4) n/a n/a 28,500 Key worker (Grade 7) n/a n/a 56,000 TOTAL 306,820 240,046 263,476 Survivors require investigations as part of their aftercare This indicates a potential annual cost saving from risk and the number and type vary depending on the type of stratification of £66,000, or around 22%. The proposed illness and treatment they have received. The data new model of care shows potential to reduce outpatient gathered by the Department of Health case note review clinic costs still further but the introduction of new was used to calculate the additional annual cost of a set initiatives as part of the high quality model of future of standard investigations including blood tests, after-care carries additional costs which will make this echocardiograms, x-rays and MRI and CT scans. This option more expensive. However, the freeing up of clinic established a measure of consistency for the costs of time should give additional capacity for services to cope survivorship services which can vary considerably for each with increased numbers of survivors in the future. individual over a long period of time. The impact of the growth in the numbers of survivors will Through interviews and data gathering from the four accentuate the growth of secondary care costs, pilot sites, a model to show the potential costs of particularly given the NICE guidance recommendations providing survivorship services in three ways was around maintaining lifelong contact with childhood constructed: cancer survivors. The estimated future costs have been modelled, based on estimated annual growth in • A largely consultant-led outpatient service for all survivorship numbers of 0.95% and inflationary growth survivors in costs: • A risk stratified service based on the Wallace levels of risk • A high quality model for future after-care based on NICE guidance around lifelong contact with survivors and the new NHS improvement care pathwayswww.improvement.nhs.uk/cancer

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