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Lineke Dijkstra

#ukscc

Plenary 3 – An insight in to

stroke clubs in the Netherlands

Once upon a time….

The Netherlands have three patient organizations that supports Stroke survivors:

- Dutch Aphasia Association

- Dutch Stroke Association

- Association Cerebraal (brain injury)

Although they cooperated…..

• 3 associations

• 3 association magazines

• 3 national boards

and…

• 3 x 11 regional administrations

• 3 x website

• 3 x Facebook, Twitter

Three fishermen in one pond…

• Members

• Volunteers

• Board members

and

• Financial resources such as grants and sponsorships

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

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

National Activities

• Self Management days

• Young stroke survivors

• Children with a parent who has a brain injury

National Activities

• Families that have a relative with a brain injury

• Families that have a relative with Aphasia

• Brain tumor contact groups

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

Self Management Days

• Aimed at stroke survivors and their partners

• Duration is 3 days

• Predetermined theme

• Enough time for rest and relaxation

Self Management Days

Themes:

• Invisible effects;

• Letting go;

• Self-confidence and shame;

• Loneliness;

• Sexuality and intimacy.

Self Management Days

Impression

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

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

Young stroke survivor weekend

Impression:

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

Children's weekend

Impression:

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

Impression national days

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

Impression Brain Tumor groups

Regional activities

• Buddies contact group

• Discussion group for partners

• Sport and exercise groups

Regional activities

• Language training groups

• Art groups, such as painting, music and theater groups

• Leisure activities such as excursions and day trips

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

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!

Impression regional groups

Developed tools for survivors

Tool for communication : conversation book. Available as a book and as app (in Dutch)

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.

Developed tools for survivors

Exercise programs and games to improve language

Developed tools for survivors

Cooking- and baking books with

customized recipes

Thank you for your attention!