What matters most?

We want your help to develop a clear and concise summary of what matters most to people living with migraine and other headache disorders

People living with migraine and other headache disorders are the experts on what it is like to live with their conditions and what needs to improve.

We want your help to develop a clear and concise summary of what matters most to people living with migraine and other headache disorders.  We want to ensure that these agreed priorities sit at the heart of the decisions that directly impact people such as the development of NHS services and research priorities.


Earlier this year we asked people who attended our public information events about their priorities.  We then asked  a small focus group of people from our volunteer forum to shape these initial ideas and suggestions into a series of statements to describe “what matters most”.

Have your say

We want to hear from as many people with migraine and other headache disorders, family members, carers and loved ones about their thoughts on the statements.

Please share your views by commenting on the draft “I” statement in the comment boxes below.

You can help us further by sharing this consultation with friends, family and contacts to help us spread the word.

The consultation closes on 31st June 2017

About the draft “I” statements

“I” statements are a set of standards/statements that focus attention on what is most important to people against which progress can be tracked.

The statements are NOT a description of the current situation.  Instead they are a set of aspirational standards that should be worked towards being achieved.

The statements have been produced by people living with migraine and other headache disorders

We have grouped the statements into temporary headings.  These may change based on your feedback.

We will provide more detail, links and resources to go alongside the statements once they are produced.

What matters most to people with migraine and other headache disorders?

Please have your say in the comment boxes at the end of each section.

Diagnosis and Treatment/Health

  • I am able to access the services I need
  • The support I get in the health service is consistent
  • The health professionals I see are knowledgeable about my condition
  • I can get condition specific treatments that work
  • I am able to access treatments
  • I have a clear, accurate and timely  diagnosis
  • My treatment is explained in a way I understand
  • My other conditions are taken into consideration in my treatment plan

Diagnosis and treatment/Health

Empowerment and Understanding

  • I understand how to prevent attacks
  • I can successfully manage my everyday life and work
  • My condition is understood by others
  • My condition is acknowledged by others
  • I have the right support to manage my condition

Empowerment and Understanding


  • My condition  is prevented
  • The cause is understood
  • A cure is found
  • I can influence research priorities
  • Research is communicated in a way that I can understand
  • I have the opportunity to be involved in research


Thank you for your comments

What happens next?

We will collect and review all the feedback you send us.  Our focus groups will help us to summarise and refine the statements in response to your feedback.

Scroll down to the footer section below and sign up to our ebulletin to be notified when the statements are published and kept updated as we share them.