Living with or beyond cancer – in numbers

1. Living with or beyond cancer – in numbers Ciarán Devane Chief Executive

2. Things have come a long way ? No cancer beds... to Active Treatment or Palliative care… to Living with cancer…

4. We have all worked to a prevalence number of 1.2 million • “Does not feel right” • “Apply better assumptions to Europreval 1992 and roll forward to 2008” • “Analogy to the US implies higher” • “Why don’t we just count them?”

5. The number of people living with cancer in the UK on 31 Dec 2008 will be. . .

6. Cancer survivors Sex % Male 800,000 40 Female 1,200,000 60 Cancer survivors Age % 0-17 16,000 0.8 18-64 774,000 38.7 65+ 1,210,000 60.5 Who are the two million cancer survivors?

7. Cancer survivors Cancer Site % Colorectal 250,000 12 Lung 65,000 3 Breast 550,000 28 Prostate 215,000 11 Other 920,000 46 What cancers are they living with?

8. 30 25 20 Incidence Per cent Mortality 15 Prevalence 10 5 0 Colorectal Lung Prostate Breast Prevalence by site differs from incidence and mortality by site Based on England 2004

9. Overall prevalence will change year on year • Prevalence = fn (new diagnoses, cancer mortality, other mortality) • 2008 will see 300,000 new cancer diagnoses • 2008 will see 150,000 cancer deaths • 2008 will see 90,000 other deaths of cancer survivors

10. The annual rate of increase of cancer prevalence is . . .

11. People with cancer have told us what the issues are . . . Confusion Fear Financial hardship Injustice Physical distress Isolation Coping with death Lack of normality Lack of respect

12. People’s needs for emotional support are not met ….. • 45% of people with cancer say that the emotional effects are the most difficult to cope with • 24% of people with cancer feel that they have nobody to talk to Source: Macmillan Worried Sick report 2006

13. They are often in financial difficulties . . . • 92% of people affected by cancer have suffered loss of income and/or higher costs • Among under 55s, the average fall in income was 50%. Source: RDSI research 2006

14. Which of these have you seen/talked to about your health / done in the last 12 months? 100% Qualifying cancer long-term 90% 90% Qualifying healthy 80% 68% 70% 60% 50% 45% 40% 30% 20% 20% 15% 11% 10% 0% A doctor or other healthcare professional in A medical doctor specialising in any other Gone to A&E general practice condition Long-term cancer survivors use the NHS more than healthy people . . . Source - Macmillan Health and Well-being Survey 2008

15. % who agree strongly or slightly with statements NB: statement about relationship only asked of those in a relationship 35% Qualifying cancer long term Qualifying healthy 29% 30% 25% 25% 20% % of relevant respondents 15% 9% 9% 10% 5% 0% Health prevented me working in preferred occupation Healthcare interferes with relationship with partner Cancer impacts both work and relationships . . . Source - Macmillan Health and Well-being Survey 2008

16. % finding ... somewhat difficult/very difficult/cannot do at all 60% 56% Qualifying cancer long-term Qualifying healthy 50% 40% 27% 30% 18% 18% 20% 16% 13% 10% 4% 4% 3% 2% 0% Participate in vigorous Carry out other routine tasks Go out to things like Participate in social activities, Carry out routine personal activities such as running and such as housework, shopping shopping, the cinema and such as visiting friends, care tasks such as bathing, strenuous sports and cooking sporting events attending clubs and meetings dressing and eating and going to social events Living life is tougher whether doing vigorous or mundane activities Source - Macmillan Health and Well-being Survey 2008

17. Cancer Survivorship: what do users think about the term? • Patients and carers felt strongly that recurrent and • metastatic disease did not mean one was not a survivor

18. What we are doing in the four nations? • Wales: • The Welsh Assembly Government (WAG) has committed to: • - Developing a Cancer Rehabilitation Standard • - Carrying out an assessment of the ongoing needs of cancer survivors • - Conducting a national survey of the patient experience • Developing a web-based resource to provide access to cancer information for patients

19. What we are doing in the four nations? • Northern Ireland: • Cancer Service Framework (due early 2009) will now include a specific survivorship section • Drafted the Framework Standard on access to benefits and financial advice • Watch this space . . .

20. In England, a National Cancer Survivorship Initiative has been launched Making the Cancer Survivorship Agenda a Reality Think Tank Event Cumberland Lodge March 10 – 11 March 2008 Report for Think Tank Event Participants

21. We have currently have seven workstreams with three more on the way Managing active/progressive disease Assessment and care planning Children and Young People Late effects Cross-cutting themes (Information/workforce/ commissioning) Work and finance Self management Research

22. Scotland has just published its plans for addressing survivorship • The Government has committed to: • Establishing a working group on survivorship to maintain national focus and identify requirements for research • Working towards Scotland-wide referral to benefits and financial advice • Working to develop a pilot employability project to support people with cancer to enter and sustain employment in environments which reflect their needs

23. It is all hugely exciting !!!!