By Christmas 2013 it was over two years since aHUSUK, and my part in it as a reluctant advocate, had begun. ( click here for the story so far)
What had been learned so far from my experience of patient advocacy for aHUS
- No one wants to be a volunteer but sometimes circumstances thrust it upon you
- If you have to 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 have to use them
- Understand the admin processes you have to 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
- And if the “wearing a tutu” is an option offered -TAKE IT! None of the above will apply
- Keep a sense of humour there will be dark times when you think you are losing.
Those who have been following this tale so far may have noticed that aHUSUK’s progress is marked by the Christmases that pass.
So it is with this post.
A Merry Christmas to aHUS alliance website viewers whatever this time of year means to you.