The Changing Story of Cancer 1 Ask the audience to suggest which types of tumours can lead after treatment to pelvic radiation disease The Changing Story of Cancer Dr Sadaf Haque Macmillan GPF Wednesday 23rd November 2016

Learner outcomes: By the end of the day Practice Nurses should be able: 1. To recognise the potential impact of a cancer diagnosis on a patient and their family/ carers. 2. To recall some long term sequelae there may be of cancer treatments. 3. To identify areas where they can promote patients to self- manage their well-being after cancer treatment. 4. To signpost to local services and sources of support.

The cancer story is changing Improvements in early detection and diagnosis More advanced treatments Move from acute to long-term condition Increasing numbers of people living with and beyond cancer Ask audience for ideas as to why there may be more people living after a cancer diagnosis Maddams J, Utley M, Moller H. Projections of cancer prevalence in the United Kingdom, 2010-2040. Br J Cancer 2012; 107: 1195-1202.

Half of people with cancer may live more than ten years after their diagnosis Total Prevalence – now Total Prevalence – 2030 Maddams J, Utley M, Moller H. Projections of cancer prevalence in the United Kingdom, 2010-2040. Br J Cancer. 2012. 107: 1195-1202.

Median survival times 50% of people with cancer in the UK now survive at least 10 years ( April 2014) Slide illustrates the change in median survival from 1 year in the 70’s to nearly six years illustrates the changing picture of people living with and beyond cancer.

Not everyone is living well 1 in 4 deal with the consequences of their treatment 1 in 2 cancer patients have two or more comorbidities Macmillan Cancer Support (2013). Cured – but at what cost? Walkington L. Patterns of breast cancer recurrence and associated health care costs of 1000 patients treated in Leeds: a longitudinal study. June 2012 – Submitted as a research abstract to the National Cancer Intelligence Network ‘Cancer Outcomes Conference’. Macmillan Cancer Support (2009) It’s no life. Living with the long-term effects of cancer. De Boer et al (2009). Cancer survivors and unemployment: a meta-analysis and meta-regression. JAMA. 301: 753-762.

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. 2015. London

Cancer increasingly co-exists with other conditions People living with cancer have the same conditions as those of a similar age profile without cancer, but tend have higher prevalence of them. Graph: Macmillan Cancer Support. Cancer in the context of other long-term conditions. Scoping evidence review and secondary data analysis. 2015. Notes: Grey = patient reported Purple = BMI score 30+ Green = HES data Raw patient reported / secondary care-recorded 2003-13 age-specific prevalence values (for PLWC1 in 2012 for patient reported values and for a 2006/07 cancer cohort for secondary care-recorded values), adjusted to remove variation between survey sample and UK population age profile and linearly extrapolated using 2014 age distribution (assuming constant age-specific prevalence). Estimates are given for the more robust data source. Estimates for hypertension, chronic heart disease, arthritis and diabetes: Hospital Episode Statistics. Estimates for obesity, mental health condition and chronic kidney disease: Health Survey for England and Scottish Health Survey (2012). Macmillan Cancer Support. Cancer in the context of other long-term conditions. Scoping evidence review and secondary data analysis. 2015.

At least 500,000 people in the UK experience long term health conditions caused by their cancer or its treatment 2 years ago we pulled together the best available evidence on consequences of treatment and compiled it in our report Throwing Light on the Consequences of Cancer and its Treatment [PDF]| providing, for the first time, estimates on the numbers of people in the UK suffering from long term health conditions as a result of their cancer 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 80,000 living with hormonal symptoms We believe that many of these are underestimations. One of the key findings of this report is also that there is a lack of data and research in this area. Macmillan Cancer Support. Throwing light on the consequences of cancer and its treatment. 2013. London

Cancer Patient Experience Survey 2015 CPES – Some areas for improvement Information: 54% of respondents said that, before they started their treatment(s), they were definitely also told about any side effects of the treatment that could affect them in the future rather than straight away. 55% of respondents said that hospital staff gave them information about how to get financial help or any benefits they might be entitled to. Only 33% respondents said they had been given a care plan Home care and support: 58% of respondents said that the doctors or nurses definitely gave their family or someone close to them all the information they needed to help care for them at home. 54% said they got enough care from health or social care services during treatment, 45% one their treatment had finished. Primary care findings: 95% of respondents said that, as far as they knew, their GP was given enough information about their condition and the treatment they had at the hospital. 63% of respondents said that they thought the GPs and nurses at their general practice definitely did everything they could to support them while they were having cancer treatment. The summary report is here http://www.ncpes.co.uk/index.php/reports/national-reports/2489-cpes-2015-national-report-pdf/file

Cancer and primary care Approx 35 patients per 1000 on a GP practice list with or surviving cancer – this is set to double by 2040 Over half will have been diagnosed more than 5 years ago Many will have unmet needs – physical, emotional, social, financial At least 1 in 4 will experience consequences of their cancer or treatment that affect their quality of life People who’ve had cancer consult their GP more than other patients of the same age At present, a GP with 1000 patients has around 35 patients with or surviving cancer, and this number is predicted to double by 2040 Traditional models of follow-up in which patients continue to attend hospital outpatient clinics, typically for 3–5 years, or sometimes much longer, are no longer sustainable.