Coping / Living with a brain tumour

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Coping / Living with a brain tumour
Leicester Information Day
Alex J Mitchell Leicester
ajm80_at_le.ac.uk
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• Classic Medical Model Authoritarian
• need to know
• dont tell / clinician in charge
• Sick role
• Victim / Lack of control
• Reactive
• Physically based

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• New Medical Model Interactive
• what would you like to know
• Patient is at the centre
• Rehab early
• Promote control / autonomy
• Proactive gt prevention
• Holistic

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Issues Picked Up?
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1660 Cancer Patients in Florida (Jacobsen, 2010)
Psychooncology. 2011 Nov20(11)1221-7. doi
10.1002/pon.1849. Epub 2010 Sep 27.
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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
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94.2
37.4
P Wang Harvard
N 9282 NCS-R
8 yrs
In cancer?gt
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• 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

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Chris Sedman
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Main Issues
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Leicester N540
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N1465
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1. Worry about future
2. Fatigue / energy
3. Anxiety / depression
4. Family / relationships
5. Memory / concentration
6. Feeling helpless/alone

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Depress 25
Distress 40
I feel low, hopeless
I feel stressed
Anger 20
Anxiety 50
I feel worried
I feel irritable why me?
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Getting Help
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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

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Help Who From?

• Nurse specialists (54)
• Family and friends (21)
• Spiritual advisor (8)
• Psychiatrist (4).

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Problems Getting Timely Help

• Help not requested (?trust)
• Help not available
• Help not given
• Wrong help given

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Offers of Help (n2557)
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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

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Alfie Bangs
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Innovations.
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What is Ideal Treatment?

• Effective
• Acceptable
• Easily accessible
• Proven (evidence based)
• Value for money

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Personal Stories
power of peer support