The role of lay associations

doi:10.1016/S0072-9752(10)97020-6

Handbook of Clinical Neurology

Volume 97, 2010, Pages 245-249

https://doi.org/10.1016/S0072-9752(10)97020-6 Get rights and content

Publisher Summary

The chapter discusses the role of lay associations catering for people with migraine and other headache disorders. Most lay associations have come into existence in response to an unmet need. The role of the lay association is primarily to help the individual sufferer with information and support. Another function of lay associations is to provide information to policy-makers and the public at large, by raising awareness of the condition and by encouraging research. These roles are probably best illustrated by reference to the development and operation of services provided by the Migraine Association of Ireland (MAI) in recent times. From very basic beginnings the MAI has become a properly organized and staffed center for sharing information and providing support, and an active advocate for better services. A brief description of the MAI's major successes to date is discussed. There is huge potential in the field of headache/migraine for research and improvements in treatments and services to sufferers. The lay associations present an obvious and extremely cooperative resource for piloting research initiatives, trialing treatment, and medical innovations.

Section snippets

The Role of Lay Associations

It took years of advocacy and argument to have migraine and other headache disorders acknowledged and recognized as a leading cause of disability. It is now generally accepted that migraine is the most common neurological condition in the world, affecting an estimated 600 million people worldwide. It is therefore more common than arthritis, asthma, and diabetes, but does not yet have the recognition or service provision that many less common disorders attract, despite being rated alongside

The genesis of a lay association

A lay association can be a valuable adjunct to the medical profession in the care and treatment of patients. Most lay associations have come into existence in response to an unmet need. In the case of the Migraine Association of Ireland (MAI: the example with which the author is most familiar), the MAI stemmed from an unmet and individual need. If information, support, and reassurance are needed for persons affected by headache disorders, then a lay association can supplement (not supplant)

Meeting the unmet need

The role of the lay association is primarily to help the individual sufferer with information and support. Another, hugely important, function is to provide information to policy-makers and the public at large, by raising awareness of the condition and by encouraging research. These roles are probably best illustrated by reference to the development and operation of services provided by the MAI in recent times. MAI examples are quoted simply because they are the ones with which the author is

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