Living With and Beyond Cancer: Taking Action to Improve Outcomes

Objectives

Provide an England-wide framework for improving outcomes and quality of life for people living with and beyond cancer, enabling them to remain as healthy and active as possible through personalised, needs-led support from diagnosis onwards.[1][2]Build on the National Cancer Survivorship Initiative and its five-step framework: information and support from diagnosis, promoting recovery, sustaining recovery, managing treatment consequences, and supporting people with active or advanced disease.[3][4]

• Deliver personalised survivorship care according to individual risks, needs and preferences rather than diagnosis alone, including structured holistic needs assessment, written care planning, Treatment Summaries, patient education and support events, and advice on physical activity and healthy weight management.[5][3][2]
• Promote recovery, rehabilitation, self-management and healthy lifestyles, including vocational support to help people remain in or return to work or education.[6][7][8]
• Tailor follow-up through stratified pathways comprising supported self-management, shared care and multidisciplinary management of complex needs, while maintaining rapid re-entry to specialist services.[9][10][11]
• Prevent, identify and manage physical, psychological and social consequences of treatment, including late effects, by informing patients, assessing needs regularly and ensuring access to specialist support where needed.[12][13][14]
• Improve support for children and young people, adults who survived childhood cancer, carers, people with learning disabilities or mental health problems, and people with active or advanced disease.[15][16][17][18]
• Strengthen survivorship intelligence, patient-reported outcomes and patient experience evidence to understand unmet needs, compare outcomes, redesign pathways and improve commissioning.[19][20][21]

Implementation

Implement survivorship support through collaboration among the National Health Service, commissioners, providers, primary and community care, social care, voluntary organisations, academic partners, cancer charities, patients and carers.[5][15]Use tested care models, evidence reviews, pilots, data linkage and workforce development to spread cost-effective practice across England.[22][6]

• Conduct holistic needs assessments at diagnosis, at the end of treatment and when circumstances change; develop care plans focused on priority needs; and share plans or recorded refusals with general practitioners.[23][24]
• Provide Treatment Summaries containing treatment, prognosis, planned care, possible late effects and contact information, supported by primary-care cancer care reviews.[23]
• Deliver Health and Wellbeing Clinics, post-treatment courses and other education events that address healthy living, recurrence symptoms, emotional wellbeing, relationships, financial support, work and local services.[25][26]
• Develop risk-stratified follow-up, nurse-led services, remote monitoring and open access to specialist advice, replacing routine appointments where clinically appropriate and enabling urgent re-referral for recurrence concerns.[27][10][28]
• Build workforce capability through training in lifestyle support, shared decision making, care planning, treatment consequences, psychological support, signposting and individualised care.[29][17]
• Establish local, intermediate and specialist regional services for complex treatment consequences, linking primary care, clinical champions and multidisciplinary specialist teams.[30][31]
• Integrate oncology, palliative care, primary care, social care and end-of-life services for people with active or advanced disease, supported by clinical nurse specialists or other key workers.[18][32]
• Use routine datasets, cancer registries, Hospital Episode Statistics, linked health and social-care data, Patient Reported Outcome Measures and patient experience surveys to monitor needs, pathways, service use and outcomes.[33][34][21]
• Assess progress through indicators including recovery support, reductions in routine face-to-face follow-up, self-care support, management of treatment consequences, avoidable emergency admissions and healthy lifestyle adoption; the framework envisaged assessment by 2015.[2]
• Use financial levers such as local tariffs, gain-share arrangements, Commissioning for Quality and Innovation incentives, national audit measures and a potential recovery tariff to support pathway redesign and reinvest efficiencies in survivorship care.[35][36][37]

The source does not specify a single consolidated governance structure, mandatory national indicator set, reporting timetable or dedicated overall implementation budget.[19][2]

Monitoring & Evaluation

The framework prioritises routine measurement of survivorship outcomes, patient experience, quality of life, unmet needs, treatment consequences, service use and longer-term health outcomes to support evidence-based commissioning and redesign.[4][20][21]Patient-Reported Outcome Measures are intended to be collected from diagnosis onwards and used alongside clinical, registry, treatment, primary-care and social-care data.[3][30][34]

• Use Patient-Reported Outcome Measures to monitor symptoms, concerns, quality of life, physical activity, treatment consequences and outcomes that matter to patients.[3][27][30]
• Use the National Cancer Patient Experience Survey to identify variation between providers and population groups, monitor care experience and inform improvement.[7][38]
• Develop routine survivorship intelligence by linking cancer registry, Hospital Episode Statistics, pathology, imaging, radiotherapy, chemotherapy, primary-care, social-care and patient-reported datasets.[19][28][34]
• Measure process proxies for outcomes, including access to clinical nurse specialists, information, Treatment Summaries, care plans, rehabilitation, support for treatment consequences and emergency admissions after diagnosis.[34]
• Assess progress towards 2015 through faster recovery support, reduced routine face-to-face follow-up, improved self-care, better ambulatory assessment, reduced avoidable emergency admissions and healthier lifestyle choices.[2]
• Evaluate pilots, stratified pathways, remote monitoring, rehabilitation, Health and Wellbeing Clinics, vocational support and redesigned post-treatment services through qualitative, economic and service-use analyses.[39][26][40][17]
• Strengthen surveillance of recurrence, metastasis, late effects, second cancers and treatment-related morbidity, using risk assessment to determine the appropriate intensity of follow-up.[41][13][14]

Specified accountability mechanisms include Cancer Peer Review measures, the Quality and Outcomes Framework cancer review indicator, potential national audit measures and Commissioning for Quality and Innovation incentives.[23][37][42]However, the framework does not provide a single consolidated indicator set, national reporting timetable, evaluation governance structure or sanctions for underperformance.[3][41][32]

Costing & Financing

The financial case rests on rising survivorship demand, pressure on National Health Service and social-care resources, and the need to replace unaffordable expansion of routine follow-up with personalised, risk-stratified and cost-effective support.[5][43][9]Costing work is intended to identify the resource use of existing services and model optimal survivorship pathways through healthcare resource groups, hospital activity costs and coding.[33][34]

• Reallocate capacity released through reduced outpatient follow-up towards holistic needs assessment, care planning, remote monitoring, rehabilitation and community support.[9][44]
• Use local tariffs, recovery tariffs, gain-share arrangements and potential Commissioning for Quality and Innovation incentives to encourage implementation of redesigned pathways.[36][24][41]
• Invest in assessment and care planning, estimated at Kina? No currency conversion is specified; clinical nurse specialist staff time for 200,000 patients is estimated at 15 million to 20 million Pound sterling annually.[36]
• Recognise potential savings from stratified follow-up, remote monitoring, reduced admissions, vocational rehabilitation, physical-activity interventions and prevention of avoidable treatment consequences.[36][45][46][47]
• Support dedicated survivorship intelligence resources from Macmillan Cancer Support, although no monetary amount is specified.[33]

Quantified evidence includes a five-year follow-up cost of 1,554 Pound sterling per survivor, estimated as 4% to 5% of the cancer budget excluding inpatient costs; projected 2020 breast and bowel outpatient activity valued at 35.7 million Pound sterling; and potential savings of 1,000 Pound sterling per patient from pathway efficiency and co-morbidity management.[9][36]The framework does not specify an overall implementation budget, funding envelope, funding gap or comprehensive resource-mobilisation plan.[1][2]