Consequences of cancer and its treatment

Improvements in early detection and diagnosis More advanced treatments From acute to long-term condition Increasing numbers of people living with and beyond cancer Maddams J, Utley M, Moller H. Projections of cancer prevalence in the United Kingdom, Br J Cancer 2012; 107:

More people are living with cancer 1. Macmillan Cancer Support. Estimate for 2015 based on extrapolation of data in: Maddams J et al. Projections of cancer prevalence in the United Kingdom, Br J Cancer 2012; 107: (Projections scenario 1) 2. ‘Five years’ refers to

Total Prevalence – now Total Prevalence – 2030 Maddams J, Utley M, Moller H. Projections of cancer prevalence in the United Kingdom, Br J Cancer : Half of people with cancer may live more than ten years after their diagnosis

3 in 4 people living with cancer are in the survivorship stage 1 1 in 4 of them deal with consequences of their treatment 2 1 in 5 of cancer survivors may have unmet needs 3 Surviving cancer does not necessarily mean living well 1. Maher J and McConnell H. New pathways of care for cancer survivors: adding the numbers. Br J Cancer : S5-S10 2. Macmillan Cancer Support. Throwing light on the consequences of cancer and its treatment London 3. Armes J et al. Patients’ supportive care needs beyond the end of treatment: A prospective, longitudinal survey. Journal of Clinical Oncology :

Cancer affects all areas of people’s lives 1.Macmillan Cancer Support. Cancer’s Hidden Price Tag de Boer AG et al. Cancer survivors and unemployment: a meta-analysis and meta-regression. JAMA : left with financial needs 1 People with cancer are more likely to be unemployed than the general population 2

People with cancer have significant social care needs Practical and personal needs 64% Mobility - 32% Housework and cooking - 31% Personal care - 14% Emotional needs 78% Macmillan Cancer Support. Hidden at home London

Cancer increasingly co-exists with other conditions Macmillan Cancer Support. Cancer in the context of other long-term conditions. Scoping evidence review and secondary data analysis

Costs accumulate over time Macmillan Cancer Support. Routes from Diagnosis. The most detailed map of cancer survivorship yet London

At least 500,000 people in the UK experience long term health conditions caused by their cancer or its treatment 90,000 affected by gastrointestinal problems, including faecal incontinence, diarrhoea and bleeding 350,000 experiencing sexual difficulties 150,000 with urinary problems 63,000 affected by lymphoedema 350,000 with chronic fatigue 240,000 living with mental health problems Macmillan Cancer Support. Throwing light on the consequences of cancer and its treatment London

Cancer Patient Experience Survey % not informed about side effects before treatment 74% not offered a written assessment and care plan 41% not enough support from health and social care services after

Patient Reported Outcomes Assessing cancer survivors quality of life through cross- sectional population surveys Key factors found to impact on patient outcomes: Emotional impact of a cancer diagnosis Experience of care during treatment Comorbidities, exacerbated by cancer treatment Treatment side effects Social and financial difficulties Inadequate preparation for the impact of cancer and its treatment Corner et al BMJ Open 2013;3:e002316

I have control of my bowels (in the last week) Very much (48%) Quite a bit /Somewhat /a little (36%) Not at all (16%) PROMs report 2015 Downing et al JCO 33:6, p

Analysis of 4,000 care plans based on Electronic Holistic Needs Assessments (eHNA) The top ten issues people with cancer are concerned about: 1. Worry, fear or anxiety 2. Tiredness / exhaustion or fatigue 3. Sleep problems / nightmares 4. Pain 5. Eating or appetite 6. Anger or frustration 7. Getting around (walking) 8. Memory or concentration 9. Hot flushes / sweating 10. Sore or dry mouth 25% of cancer patients struggle to manage the emotional impact of the disease Macmillan Cancer Support. Electronic Holistic Needs Assessment data as of 20/06/2015.

National cancer strategies reflect the changing story of cancer Achieving World-Class Cancer Outcomes (2015) Prevention, diagnosis, treatment, patient experience, quality of life, living with and beyond cancer The NHS Cancer Plan (2000) Focused on survival, adequate funding, cancer waiting times Cancer Reform Strategy (2007) Prevention, treatment guidelines, reduce variation, improve access Improving Outcomes: A Strategy for Cancer (2011) Efficiency, prevention, patient choice

1. Information and support from the point of diagnosis 2. Promoting recovery (the ‘Recovery Package’) 3.Sustaining recovery 4. Managing the consequences of treatment 5.Supporting people with active and advanced disease NCSI report - 5 step framework

2014 NHS England 5 Year Forward View “We will also work in partnership with patient organisations to promote the provision of the Cancer Recovery Package, to ensure care is coordinated between primary and acute care, so that patients are assessed and care planned appropriately.”

Achieving world-class cancer outcomes A strategy for England (July 2015) Recommendation 63: The NHS and partners should drive forward a programme of work to ensure that people living with and beyond cancer are fully supported and their needs are met. This should include approaches to reducing and managing long-term consequences of treatment. Recommendation 65: NHS England should accelerate the commissioning of services for patients living with and beyond cancer, with a view to ensuring that every person with cancer has access to the elements of the Recovery Package by 2020.