'Living Well' Conference 2013: The National Context of Survivorship


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How the cancer story is changing and how cancer services are adapting.

Steve Hindle, Cancer Survivorship Programme Lead, Macmillan Cancer Support

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'Living Well' Conference 2013: The National Context of Survivorship

  1. 1. Progress on Cancer Survivorship Stephen Hindle Cancer Survivorship Programme Lead
  2. 2. The cancer story is changing A diagnosis of cancer used to mean either you died within 18 months or you were cured, now there is a big group of people who are living with incurable cancer. Many others are living with the consequences of treatment. Today we will cover the learning from the National Cancer Survivorship Initiative.
  3. 3. The number of people living with cancer is set to double by 2030 Source: Maddams J, Utley M, Møller H. Projections of cancer prevalence in the United Kingdom, 2010-2040. Br J Cancer 2012; 107: 1195-1202.
  4. 4. Median survival times
  5. 5. Cancer Patient Experience Survey (2013)
  6. 6. Taking action to improve outcomes (2013)
  7. 7. Promoting Recovery: The Recovery Package
  8. 8. The Recovery Package 1. Assessment and Care Planning
  9. 9. Macmillan Electronic Holistic Needs Assessment
  10. 10. 2. Treatment Summary
  11. 11. Cancer Care Review •Post-treatment with GP assessment and care planning •Financial impact of cancer •Patient awareness of prescription exemptions •Possible late effects of cancer and treatment •Information needs in primary care
  12. 12. 3. Health and Wellbeing events
  13. 13. Sustaining recovery •Care Co-ordination •Remote Surveillance
  14. 14. Stratified Pathways: Southampton UHT Tumour Group Period covered Pathway: self managed (low / medium risk) Period from end of treatme nt Pathway : Consultan t led ( high risk and complex ongoing issues) Breast Jan 12 – March 13 45% 2–8 months 55% Colorectal Jan 12 – March 13 30% 4–6 months 45% Jan 12 – March 13 70% 2–6 months 30% Testis Pathway: Nurse led (stoma manage ment and complex bowel issues) 25% 14
  15. 15. Supporting self management •Frontline staff can influence healthy behaviour change: •Raise /prompt issues of lifestyle (physical activity, healthy eating) with patients •Prompt self monitoring of behaviours •Prompt specific goal setting related to behaviours •Refer to appropriate specialist (lifestyle change support) services if required •New Top Tips for Professionals coming soon
  16. 16. Macmillan local projects Jam packed website Patient Packs Exercise to music DVD Evidence Reviews
  17. 17. Walking for Health
  18. 18. Work and cancer www.macmillan.org.uk/work
  19. 19. The impact of cancer and its treatment •Patient Reported Outcome Measures (PROMS) give insight: • the quality of life for those living with and beyond cancer from their experiences and point of view • the impact of cancer and treatments on ability to lead meaningful lives.
  20. 20. What did people tell us? – 1 year post diagnosis nearly half feared recurrence and almost a third were afraid of dying. – 38% of prostate cancer survivors reported urinary leakage and 58% reported impotence. – 1 in 5 colorectal survivors had difficulty in bowel control. – QOL is closely associated with disease status and presence of other long term conditions. – Almost a third reported doing no physical activity and around a fifth did the weekly recommended CMO physical activity i.e. 30 mins x 5. – Increased physical activity associated with better QOL.
  21. 21. All patients reach one of these outcome groups This is a survivorship outcome – taking different routes from diagnosis framework 25.3% 7+ years, no complications 29.7% 7+ years, morbidities 6.3% Everyone diagnosed with prostate cancer in England in 2004 1-7 years, no complications 5.9% 1-7 years, other morbidities Diagnosis 20.4% 12.4% 1-7 years, cancer complications 0-12 months
  22. 22. Insight – Health economics
  23. 23. Key survivorship messages • A shift in professional culture is essential to enable supported self management. • New models of cancer aftercare gives opportunities to improve quality and reduce cost. • Many people can self manage their health with support, with rapid access to professionals when needed. • There is significant unmet need arising from consequences of treatment, which can be successfully addressed through prevention and treatment. • Good survivorship care requires timely communication across boundaries.