Putting people at the heart of their care

How the UK Headache Network is giving a voice to people with migraine and headache disorders

What matters most?

We wanted to develop a clear and concise summary of what matters most to people living with migraine and other headache disorders, so undertook research to find out.

This will help direct the network’s activities and guide us in putting the priorities of people with migraine and headache disorders at the heart of the decisions that directly impact people such as the development of NHS services and research priorities.

Research

Last 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”.

“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 and were produced by people living with migraine and other headache disorders.

What we were told matters most

When it comes to diagnosis, treatment and health, people with migraine and headache said that what matters most to them was:

  • I am able to access the services I need
  • 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
  • The support I get in the health service is consistent
  • The health professionals I see are knowledgeable about my condition

When asked about research into migraine and headache disorders, people with migraine and headache said that what matters most to them was:

  • The 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

Asked what helped empower them and helped them explain their condition to others, people with migraine and headache said:

  • 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

How the network is responding

People with migraine and their families have shaped the network’s activity in its first year.  Their involvement and this research has shaped the development of our framework for optimal care for adults with headache that The Migraine Trust co-produced by NHS RightCare and the UK Headache Network. Going forward, it will inform the scope and content future audits and how we grow our local networks and engagement initiatives.