Titel van uw presentatie evt. over twee regels. · Developed tools for survivors Exercising after a...
Transcript of Titel van uw presentatie evt. over twee regels. · Developed tools for survivors Exercising after a...
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#ukscc
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Lineke Dijkstra
#ukscc
Plenary 3 – An insight in to
stroke clubs in the Netherlands
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Once upon a time….
The Netherlands have three patient organizations that supports Stroke survivors:
- Dutch Aphasia Association
- Dutch Stroke Association
- Association Cerebraal (brain injury)
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Although they cooperated…..
• 3 associations
• 3 association magazines
• 3 national boards
and…
• 3 x 11 regional administrations
• 3 x website
• 3 x Facebook, Twitter
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Three fishermen in one pond…
• Members
• Volunteers
• Board members
and
• Financial resources such as grants and sponsorships
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So: the 3 associations merged!
Hersenletsel.nl now is the leading patient organization for people with brain injury, including stroke, and their families in The Netherlands. Hersenletsel.nl - organizes peer support
- provides information
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So: the 3 associations merged!
Hersenletsel.nl - advocates patients interests at government,
insurance companies and other stakeholders
- monitors and improves the quality of care for people with brain injuries in The Netherlands
- develops tools and products that can be helpful to improve quality of life
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National Activities
• Self Management days
• Young stroke survivors
• Children with a parent who has a brain injury
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National Activities
• Families that have a relative with a brain injury
• Families that have a relative with Aphasia
• Brain tumor contact groups
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Why is this important??
• Little assistance available in chronic phase
• At home you discover your limitations
• You learn most from other people in similar situations
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Self Management Days
• Aimed at stroke survivors and their partners
• Duration is 3 days
• Predetermined theme
• Enough time for rest and relaxation
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Self Management Days
Themes:
• Invisible effects;
• Letting go;
• Self-confidence and shame;
• Loneliness;
• Sexuality and intimacy.
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Self Management Days
Impression
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Young stroke survivor weekend
• Aimed at young stroke survivors and their partners
• Duration is a weekend (Friday 18.00h-Sunday 12.00h)
• Predetermined theme
• Enough time for rest and relaxation
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Young stroke survivor weekend
• What is the difference between self management days and a young stroke survivor weekend?
• Work??
• Social life??
• Family??
• Standing in the middle of life
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Young stroke survivor weekend
Impression:
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Children's weekend
• Aimed at children with a parent who had a stroke/brain injury
• Duration is a weekend (Friday 18.00h-Sunday 12.00h)
• Predetermined theme
• Enough time for relaxation
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Children's weekend
Impression:
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National days for families
• Aimed at families with a relative with brain injury / aphasia
• Duration is one day
• Activities for all ages/family members/friends
• Predetermined theme
• Time for mutual contacts and relaxation
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Impression national days
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Brain tumor contact days
• Aimed at people with a brain tumor, their
relatives and for people who lost someone
to a brain tumor
• Duration is one day
• Predetermined theme
• (Medical) information and mutual contacts
equally important
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Impression Brain Tumor groups
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Regional activities
• Buddies contact group
• Discussion group for partners
• Sport and exercise groups
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Regional activities
• Language training groups
• Art groups, such as painting, music and theater groups
• Leisure activities such as excursions and day trips
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Regional contact groups
• Aimed at people with brain injury
• Duration is 2-3 hours; frequency ranges from 1 time per week up to 1 time per month
• Wide variety of groups / activities
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Regional contact groups
• Main goals are to help people increase their social networks and rebuild their lives again after stroke/brain injury
• Over 100 groups in our country, all run by volunteers!
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Impression regional groups
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Developed tools for survivors
Tool for communication : conversation book. Available as a book and as app (in Dutch)
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Developed tools for survivors
Exercising after a stroke: do it yourself! Available as (E)book and as app, in Dutch and English!
The e-book (pdf) exercise guide can be ordered from the website www.lulu.com for € 5,00. For every guide that is sold, € 3,30 will go towards further development of exercises for stroke patients. App available in App Store and Google Play store.
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Developed tools for survivors
Exercise programs and games to improve language
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Developed tools for survivors
Cooking- and baking books with
customized recipes
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Thank you for your attention!