Survivorship: the new kid on the block?

1. Survivorship: the new kid on the block? Jackie Turnpenney, National Cancer Action Team September 2012

2. “We can no longer save people from drowning and then leave them on the dock to cough and splutter on their own in the belief that we have performed all we can” (Mullan 1985)

3. Why has it developed as a concept? • What is NCAT doing to improve people’s experience following a cancer diagnosis?

4. The emergence of survivorship • 1960’s linked to life after heart attacks • 1980’s concept of survivorship appeared in cancer related literature • 1990’s autobiographical works (J Diamond, L Armstrong)

5. Survival trends

6. Saving people from drowning • Cancer rates are increasing • Cancer treatments are improving • More people are surviving cancer • The number of people living with a cancer diagnosis will double in the next 15 years • Oncology’s goal was ‘cure’ • Data is improving and importance is being placed on prevalence as well as mortality

7. These leave us with two challenges: The current system for follow-up isn’t going to work How will we meet the physical, psychological and social needs?

8. NICE guidelines • Late 1990s early 2000’s • Survivorship as a concept doesn’t appear in the guidance • Early versions rarely mention rehab but palliative care is included ‘It should be noted that half the patient population is over 65; many older women live alone and may need practical help with their everyday lives.’ (Breast Cancer IOG)

9. NICE Supportive and Palliative Care Guidance 2004 • The first recognition that there was more that could be done • Holistic Assessment • Psychology • Rehabilitation • Spirituality

10. Cancer Reform Strategy 2007 ‘Not enough attention has been given to the long term consequences of a cancer diagnosis for the ever increasing number of individuals surviving the disease or as to how to enable individuals to return to active lives following the completion of initial cancer treatments’

11. 2010 Autumn 2012 Publication of the new vision document ?

12. Survivorship was the last straw!

13. Survivorship

14. Direction of travel for the NHS • Improved clinical outcomes for patients • Community based care enhanced • Reduced unscheduled admissions • Shift from biomedical to psycho-social medical model of care – consistent with aging population and Social Care • Maximisation of patients who can co-manage/ self care

15. ‘We are already doing it – just the role of the CNS’ ‘Its just supportive and palliative care by another name’ ‘If palliative care started earlier that would address the problem’

16. “We can no longer save people from drowning and then leave them on the dock to cough and splutter on their own in the belief that we have performed all we can” (Mullan 1985)

17. “Neither sport nor disability would be thought of the same way after the Paralympians “lifted the cloud of limitation”, a packed Olympic Stadium was told

19. Further Information www.ncsi.org.uk www.ncat.nhs.uk/living with and beyond cancer/rehabilitation email: jackie.turnpenney@ncat.nhs.uk