Following on from a valid point raised by Anne Marie a while ago that the NHS choices website does not list Chiari or Syringomyelia in any useful detail, the following has happened.

1. I mentioned it a few months ago to the team at The Walton Centre. They were surprised to hear the news, but were already on with writing a technical piece of patient information to which they have added me to the reading panel. They were also going to push the NHS Choices website to include ACM and SM.

2. Laura Hickman of 4th Plinth Trafalgar Square fame told me yesterday that she has managed to get the NHS choices editorial team to add the subject to their annual review of the website and content.

They do listen to patients views and experiences in the past and present in order to provide a quality information service for patients.

They do have a forum on which to go and add your own story. I have done so on behalf of the blog, but would invite you all to do the same, the more support that this topic gets then the more chance there is of us making an impact and getting the job done.

We all make noises about us not being recognised and how poorly treated we are from a lack of information, so here is our chance to make a difference!

Sign up and add your own story!!!!!!!!!

http://www.healthtalkonline.org/0/0/Forum/261

Lets get this done and show the world that Chiari.co.uk and Chiariblog.co.uk are at the forefront of making things happen.

Link to Lauras Facebook page:

http://www.facebook.com/fourthplinth?ref=mf

A link to her 4th Plinth Awareness project as part of the Andrew Gormley "One and Other" project.

http://www.oneandother.co.uk/participants/Laura_H

Laura spent an hour on the plinth holding up large pieces of paper with messages that she had been sent from Chiarians across the world. She graciously held up 2 of my own comments (I was the only one to have 2 held up)

http://www.facebook.com/album.php?aid=114248&id=106088206820

Laura now raises money for Chiari and is setting up a UK subsidiary of the American organisation www.chiaricenter.org

Well done all!

Chris