1. November 2009 Creating a movement for Neurological conditions – lessons from cancer

2. Agenda About us Similarities between cancer and neurological conditions Differences between the two disease areas Lessons from cancer Summary

3. About us

4. Why we’re here

5. What we do Strategic policy consultancy Health campaigning Parliamentary engagement and scrutiny Media relations Stakeholder engagement Issues and crisis management

6. Can neurological conditions learn any lessons from cancer?

7. Similarities

8. Similarities between cancer and neurological conditions Exceptionally common diseases Stigma Vibrant voluntary sector Multitude of stakeholders Some existence of a ‘postcode lottery’ Treatment pipelines Research issues are very similar

9. Differences

10. Differences between cancer and neurological conditions Cancer is seen as a higher political priority Multitude of ‘celebrity’ survivors or patients Cancer ‘survivorship’ Public funding gap Cancer is the number one public fear Clear national leadership Up-to-date national strategy Research spend

11. Lessons from cancer

12. Lesson 1 – it’s a journey…. 1970s 1980s 1990s 2000s 2009 Political: The Calman Hine report on commissioning cancer services (1995) Introduction of a National Clinical Director for Cancer (1999) NHS Cancer Plan (2000) Establishment of the National Cancer Research Institute (2001) Cancer Reform Strategy (2007) Social: Cancer was spoken about more openly on TV (1990s) Increase in cancer patient empowerment (2000s) Merger of CRC and ICRF (2002)

13. Lesson 2 – Hope and fear

14. More than 95% of men now survive testicular cancer Over half of all people with cancer now survive beyond 5 years Breast cancer death rates have fallen by a fifth in the last 10 years Cancer death rates have fallen by 10% over the last 10 years Survival rates have improved for nearly all cancers More than 7 out of 10 children are now successfully treated Lesson 3 – the promise of progress

15. Lesson 4 – overcoming stigma

16. Lesson 5 – the benefits of a robust evidence-base Authoritative voice Based on facts – scale of the problem; size of the prize Use evidence effectively Importance of independence

17. Lesson 6 – involving supporters Many patients and supporters want to help in non-financial ways Campaigning is empowering AND can lead to positive legislative change Helps break down stigma Relatively inexpensive to do this You don’t have to be a ‘campaigning’ charity to do this Doesn’t have to be placard- waving or marches on Westminster; it can be more subtle

18. Lesson 7 – The power of partnership Working with other cancer charities Working with other healthcare organisations Working with charities outside of health Unclaimed Assets Coalition Three case studies on partnership working

19. In summary…. 2) The importance of both hope and fear 4) The need to overcome stigma 3) The promise of progress 1)It doesn’t happen overnight 6) The benefits that can be gained from involving campaigners 8) Use the cancer experience as a lever 7) Partnership working often reaps the biggest rewards 5) The benefits of a robust evidence-base

20. Thank you