Lessons about aHUS Patient Advocacy

In the past this website featured a series of blogs which covered the story of a patient advocacy organisation in the UK interwoven with the author’s family aHUS story.

About half way through the series, the author listed what he had learned about patient advocacy. These insights are shown below.

  • No one wants to be a volunteer but sometimes circumstances thrust it upon you.
  • If you must advocate, have an important reason, particularly a personal one to do it
  • Find like-minded people for the cause as their support is essential, whether in your own country or abroad
  • Learn about your subject, not just your own circumstances but also the journey of others
  • Learn skills you do not have, it is sometimes very easy to do so when you must use them
  • Understand the processes you must follow, become expert in them and try to keep one stage ahead
  • It is not just about emotion, you are in competition with others just as badly off
  • Decision makers need evidence, evidence in your favour is king, gather it
  • For evidence against what you want, raise reasonable doubt about it if all else fails
  • Have simple plans to follow
  • Be prepared to change them if something new happens
  • Develop your voice and be confident in using it
  • Do not be afraid to challenge wisely and take calculated risks
  • Develop a core message about what you want and repeat it
  • The internet is powerful but use the social media sparingly and
    keep to the point
  • Be patient, try to work smarter and not harder, you have more time than you think
  • In their moment, ordinary people can achieve extraordinary feats together
  • However sometimes people will let you down, their perception may differ
  • Keep a sense of humour there will be dark times when you think you are losing
  • And if the “wearing a tutu” is an option offered -TAKE IT! None of the above will then apply

To find out about the “tutu” option the reader will have to read at least the first few pages of the A Reluctant Advocate . It has been turned into a short “book” which can be accessed on this website at this link HERE

Many may be called to public patient advocacy but not many answer it. It is fact of life when volunteering is needed. Whether it’s for selfish reasons or just altruism something must motivate the individual until it is time to stop. One thing that is also a fact is that if we all do a little together we can do a lot.

Article No. 581

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