Living With and Beyond Cancer: Taking Action to Improve Outcomes

Objectives

The framework aims to help people living with and beyond cancer remain as healthy as possible and achieve the best possible quality of life for as long as possible. It sets the direction for cancer survivorship work in England to 2015, seeking improved survival, quality of life and experience through support commissioned according to individual need rather than diagnosis.[1][2]

• Provide information, advice and support from diagnosis, through recovery and sustained recovery, during management of treatment consequences, and for people with active or advanced disease.[2][3]
• Embed personalised care through Holistic Needs Assessments, written care plans, Treatment Summaries, patient education and support events, and advice on physical activity and healthy weight management.[3][4]
• Promote shared decision-making, self-management, rehabilitation and tailored follow-up, guided by the principle “No decision about me without me”.[3][4]
• Stratify follow-up according to risk and complexity, supporting self-management where appropriate, shared care for moderate-risk patients, and multidisciplinary consultant-led management for ongoing treatment or complex needs.[5][6]
• Minimise, identify and manage physical, psychological and social consequences of treatment, including late effects that can emerge many years after cancer treatment.[7][8]
• Support recovery in employment, education, finances, relationships and daily life, while recognising the needs of carers, children, young people and adults who had cancer in childhood or adolescence.[9][10][11]
• Integrate palliative care as an essential component of support for people with active, progressive, recurrent, metastatic or advanced cancer, alongside active treatment and timely end-of-life care.[12][13]
• Strengthen survivorship intelligence on needs, outcomes, care pathways, quality of life, treatment effects, service use and the resources needed to address unmet need.[14][15]

Implementation

Implementation is based on changing service models rather than simply expanding conventional follow-up. It combines needs-based assessment and care planning, coordinated multidisciplinary support, patient education and self-management, risk-stratified follow-up, rapid re-access to specialist services, and better use of evidence and linked data.[2][4][5]

• Conduct Holistic Needs Assessments near diagnosis, at the end of treatment and when circumstances change; use findings to agree care plans, identify an ongoing point of contact and communicate plans to general practitioners.[16][17]
• Provide Treatment Summaries recording treatment received, prognosis, future care, recurrence indicators and potential consequences, with copies for patients and general practitioners.[16]
• Deliver rehabilitation from diagnosis through multidisciplinary input, including physiotherapy, nutritional advice, speech and language therapy, psychological support, occupational therapy, social work and vocational rehabilitation according to need.[18][19]
• Offer tiered employment support through universal information and signposting, active self-management support and specialist vocational rehabilitation for complex needs.[10][20]
• Use Health and Wellbeing Clinics and other education or peer-support events to address healthy living, recurrence symptoms, emotional wellbeing, financial support, work and local services.[21][22]
• Enable supported self-management through tailored information, remote monitoring, clear care coordination, a named contact and rapid return to specialist services without unnecessary routine appointments.[6][23]
• Improve treatment-consequence services through patient-reported outcome measures, targeted symptom questions, primary-care education, specialist advice and regional or supra-regional support for complex conditions.[24][25]
• Coordinate specialist, hospital, primary, community, social, palliative and end-of-life care for active and advanced disease, supported by multidisciplinary teams and key workers.[12][26]
• Work across the National Health Service, commissioners, providers, general practice, voluntary organisations, charities, academia, patients and carers. The National Cancer Survivorship Initiative, established by the Department of Health and Macmillan Cancer Support with support from NHS Improvement, provides a collaborative platform for testing and spreading models of care.[2][27][28]
• Use commissioning intentions, tariffs, gain-share arrangements and potential Commissioning for Quality and Innovation incentives to support recovery services, nurse-led follow-up, remote monitoring and reinvestment of follow-up efficiencies.[29][30][31]
• Build evidence through patient-reported outcome measures, patient-experience surveys, pilots, service evaluations, clinical audits, cancer-registry data and linkage of cancer, hospital, primary-care, treatment and social-care datasets.[32][15][33]

Monitoring & Evaluation

The framework proposes a survivorship intelligence system centred on routine patient-reported outcome measures, linked administrative and clinical data, patient-experience evidence, audits and service evaluations. Its purpose is to understand survivor needs, outcomes, treatment consequences, service use and inequalities; support commissioning and service redesign; and track progress towards more personalised, risk-stratified care.[14][15][34][35]

• Collect Patient-Reported Outcome Measures from diagnosis and at subsequent intervals to assess symptoms, quality of life, treatment impacts, physical activity, fear of recurrence and unmet needs.[3][32][4][36]
• Use the National Cancer Patient Experience Survey to monitor care planning, information provision, financial guidance and variation between providers and population groups. Reported indicators include 24% receiving a written assessment and care plan, 52% of those requiring financial or benefits information receiving it from staff, and 81% receiving understandable written information on treatment side effects.[18][9][37]
• Link cancer-registry, pathology, imaging, radiotherapy, chemotherapy, hospital, primary-care, social-care and patient-reported datasets to map routes from diagnosis, recurrence, metastasis, treatment effects and resource use.[14][38][26][15][33]
• Record recurrence and metastasis more consistently, strengthen treatment data for active and advanced disease, and publish information on availability of clinical nurse specialists.[14][13]
• Assess service structures and process measures, including access to key workers, treatment summaries, care plans, rehabilitation, treatment-consequence services and emergency admissions, alongside outcomes such as quality of life, functional independence, length of stay and mortality within 30 days of treatment.[15][33]
• Evaluate pilots and redesigned pathways through qualitative research, economic evaluation, comparative data, audits and testing of electronic self-assessment, remote monitoring and care-review tools.[28][30][21][24]
• Monitor progress towards 2015 through faster recovery support, reduced routine face-to-face follow-up, greater self-management and remote monitoring, improved community management, fewer avoidable emergency admissions and healthier lifestyle choices.[35]

Illustrative evidence shows the scale of monitoring needs: cancer survivors were projected to increase from 1.8 million to 3 million by 2030, while 2.4 million oncology follow-up appointments took place in 2011/12.[14]Stratified-pathway testing reported 3,400 prospective outpatient slots saved over six months across seven prostate and colorectal sites, and a 6-8% reduction in unplanned admissions among lung cancer patients.[39]The framework does not provide a single consolidated indicator set, mandatory reporting timetable, national surveillance protocol or comprehensive formal accountability structure, although peer review, commissioning incentives, outcomes frameworks and proposed national metrics provide partial mechanisms.[16][36][34][35]

Costing & Financing

The financial case rests on the growing number of people living with and beyond cancer, unmet needs, avoidable treatment consequences and the unsustainability of simply expanding traditional follow-up. The proposed model seeks to release and reinvest resources through personalised assessment, supported self-management, remote monitoring, rehabilitation and risk-stratified follow-up, while recognising that initial investment is needed.[2][40][5][30]

• Reallocate efficiencies from reduced routine follow-up to holistic needs assessment, care planning, rehabilitation, remote monitoring, community support and patient education.[29][5][30]
• Develop local tariffs, recovery tariffs, gain-share arrangements and possible financial or audit incentives to support survivorship care beyond initial treatment.[29][30][17][31]
• Recognise that follow-up was estimated at £1,554 per survivor over five years, excluding inpatient costs, equivalent to approximately 4-5% of the total cancer budget.[5]
• Estimate that, at 2020 breast and bowel cancer activity levels, 364,000 outpatient appointments represented approximately £35.7 million at a tariff of £98 per clinical oncology follow-up appointment.[30]
• Invest an estimated £15-20 million annually in clinical nurse specialist staff time to provide assessment and care planning for 200,000 patients in England.[30]
• Use targeted rehabilitation and prehabilitation where evidence suggests potential savings, including a lung-cancer prehabilitation programme costing £188 per patient and reporting savings of more than £1,250 per patient.[19]
• Consider wider economic effects, including lost income, productivity and benefit dependency. The total cost of cancer to the English economy was estimated at £18 billion in 2008, including £5.5 billion in lost productivity among cancer survivors.[40]

Specific delivery costs include approximately one hour of nursing time per Holistic Needs Assessment and £1,000-£3,000 per Health and Wellbeing Clinic session, with staffing identified as the principal expense.[16][22]Physical-activity interventions were estimated at £440 per quality-adjusted life year compared with no intervention.[41]Many sections identify affordability, cost effectiveness or the need to model optimal pathways, but do not specify a total programme budget, confirmed funding source, national allocation or quantified funding gap.[15][33][35]