1. Coping / Living with a brain tumour Leicester Information Day Alex J Mitchell Leicester ajm80@le.ac.uk

2. Classic Medical Model: Authoritarian 1. need to know 2. dont tell / clinician in charge 3. Sick role 4. Victim / Lack of control 5. Reactive 6. Physically based

3. New Medical Model: Interactive 1. what would you like to know 2. Patient is at the centre 3. Rehab early 4. Promote control / autonomy 5. Proactive => prevention 6. Holistic

4. Issues Picked Up?

5. Psychooncology. 2011 Nov;20(11):1221-7. doi: 10.1002/pon.1849. Epub 2010 Sep 27. 1660 Cancer Patients in Florida (Jacobsen, 2010)

6. Johnsen Do advanced cancer patients in Denmark receive the help they need? A nationally representative survey of the need related to 12 frequent symptoms/problems Psychooncology. 2012 1000 Adv Cancer Patients in Denmark (Johnsen, 2013)

7. 94.2% 37.4% 8 yrs N= 9282 NCS-R P Wang Harvard In cancer?=>

8. If mental ill health is present in cancer: 1.Lower rates of cancer screening 2.Lower rates of cancer diagnosis 3.Lower rates of cancer treatment 4.Poorer adherence with treatment 5.Higher mortality

9. Chris Sedman

10. Main Issues

11. Leicester N=540

12. N=1465

13. 1.Worry about future 2. Fatigue / energy 3. Anxiety / depression 4. Family / relationships 5. Memory / concentration 6. Feeling helpless/alone

15. Distress 40% Depress 25% Anger 20% Anxiety 50% I feel low, hopeless I feel stressed I feel worriedI feel irritable why me?

16. Getting Help

17. What Help is Wanted? 19% wanted medication (eg antidepressants) 31% want self help guidelines 31% wanted group therapy 56% wanted illness information. 58% complementary therapies 62% trusted face-to-face psychological support

18. Help – Who From? Nurse specialists (54%) Family and friends (21%) Spiritual advisor (8%) Psychiatrist (4%).

19. Problems Getting Timely Help 1.Help not requested (?trust) 2.Help not available 3.Help not given 4.Wrong help given

20. Offers of Help (n=2557)

21. Top Tips for Coping Successfully 1.Ask for help when needed 2.Talk with other patients / support groups 3.What can I do not what have I lost 4.Start slow but build up 5.Use family and friends 6.Plan for the future

22. Alfie Bangs

23. Innovations….

24. What is Ideal Treatment? 1.Effective 2.Acceptable 3.Easily accessible 4.Proven (evidence based) 5.Value for money

28. Personal Stories …power of peer support