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Coping / Living with a brain tumour

Coping / Living with a brain tumour. Leicester Information Day. Alex J Mitchell Leicester. ajm80@le.ac.uk. Classic Medical Model: Authoritarian “need to know” “don’t tell” / clinician in charge Sick role Victim / Lack of control Reactive Physically based.

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Coping / Living with a brain tumour

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

  2. Classic Medical Model: Authoritarian • “need to know” • “don’t tell” / clinician in charge • Sick role • Victim / Lack of control • Reactive • Physically based

  3. New Medical Model: Interactive • “what would you like to know” • Patient is at the centre • Rehab early • Promote control / autonomy • Proactive => prevention • Holistic

  4. Issues Picked Up?

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

  6. 1000 Adv Cancer Patients in Denmark (Johnsen, 2013) 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

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

  8. If mental ill health is present in cancer: • Lower rates of cancer screening • Lower rates of cancer diagnosis • Lower rates of cancer treatment • Poorer adherence with treatment • Higher mortality

  9. Chris Sedman

  10. Main Issues

  11. Leicester N=540

  12. N=1465

  13. Worry about future • Fatigue / energy • Anxiety / depression • Family / relationships • Memory / concentration • Feeling helpless/alone

  14. Depress 25% Distress 40% I feel low, hopeless I feel stressed Anxiety 50% Anger 20% I feel worried I feel irritable “why me”?

  15. Getting Help

  16. 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

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

  18. Problems Getting Timely Help • Help not requested (?trust) • Help not available • Help not given • Wrong help given

  19. Offers of Help (n=2557)

  20. Top Tips for Coping Successfully • Ask for help when needed • Talk with other patients / support groups • “What can I do” not “what have I lost” • Start slow but build up • Use family and friends • Plan for the future

  21. Alfie Bangs

  22. Innovations….

  23. What is Ideal Treatment? • Effective • Acceptable • Easily accessible • Proven (evidence based) • Value for money

  24. Personal Stories …power of peer support

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