The Role of Lay Organizations in Relieving the Burden of Headache: European Perspective

Reference work entry


“They’re unique, they’re expert and they’re crucial.” So says Professor Peter Goadsby of UCSF and The National Hospital for Neurology and Neurosurgery, referring to one particular lay support organization for headache sufferers.

Much underestimated and sometimes dismissed as being ill-informed timewasters, the medical profession is now beginning to recognize the increasingly important role that is filled by lay organizations, particularly in supporting sufferers.

The general public’s view is that headache is a minor health problem, but given that approximately 10 million people in the UK suffer headache in one form or another and the cost to the economy is approximately £7 billion per annum, this is not a minor health problem.

Most headache sufferers will self-diagnose and self-treat with over-the-counter remedies, but in the UK for the estimated 12% with severe and/or rare headache conditions access to a correct diagnosis and treatment can take anything from 2 to 25 years.

Lay patient organizations have an important part to play in raising awareness of the various conditions, promoting a better understanding of them, providing information and support to sufferers and their families, promoting better liaison between sufferers and the medical profession, and by supporting research into headache conditions.


Medical Profession Cluster Headache Trigeminal Neuralgia Headache Disorder Severe Headache 


  1. Goadsby PJ (2007) Cluster headache (DVD). DMA Video, LondonGoogle Scholar
  2. Headache UK Manifesto (2009) Migraine action, migraine trust. BASH, MIPCA, OUCH (UK), LondonGoogle Scholar
  3. ICHD II; various, Mar 2010

Copyright information

© Lifting The Burden 2011

Authors and Affiliations

  1. 1.OUCH (UK) Organisation for the Understanding of Cluster HeadacheTenbyUK

Personalised recommendations