e-Petition for Hughes Syndrome recognition

Please take a moment to sign this e petition, lets make some big changes to the way Hughes is look at in the benefts system, which would lead to other systems such as education and employment. I'm sure many of us have been through the trials and frustrations of going for ATOS medicals or spending hours filling in DLA forms just to be refused and have to go through the stressful appeals process. Its an unfair system and needs reforming.


27 Replies

  • Leanne - I don't know if you noticed but the petition is set to have finished at 3.30 today! Perhaps this is why no one can sign it!

    You will need to set it up again with an advanced date for closing.

    Hope thats helpful.

  • I just looked its set to finish at 3.30 on 22/05/2013. Had me panicking then that I'd mucked this up lol!

    You should be able to sign it, 20 people or so have already


  • Hmmm.... wonder why mine is saying only one person has and I can't!! I will have another go!!

  • it says on mine that only 2 people have signed but when you search hughes in the search back, it was 22 to last look. strange thing technology lol

  • I live in the US so can not sign, good Luck to you in England!!!!

  • I'm in the same boat, live in the US:(

  • Its updated now! All signed....

  • YAY, thanks for the perserverance! xxx

  • I have been informed that the link doesn't always work. If this happens, just put Hughes into the search bar at the top, its the only petition on the subject :D

  • Well done Leanne, All signed xx

  • Thanks a lot, please keep it going. 100,000 signatures in a year requires over 275 signatures a day and that is going to be a hard target that can only be attained by people forwarding to friends and family or putting on their facebook, twitter, other social networks or forums for lupus/hughes/etc xx

  • I wish all of us in other countries could sign. :(

  • Now 43

  • Just signed and posted a link to the petition to my facebook wall xx

  • Thanks guys xx

  • Done

  • sorry just seen this link and missed it ;( but well done you leanne xxx

  • Thank you everyone. Nearly 80 so far just over 24 hours in. Another 364 days to go xxx

  • Off to a good start Leanne have signed and shared on facebook

  • Awesome, great news! Currently at 117

  • Well done Leanne! I have signed and posted on facebook and have friends who are signing

  • I'd like to sign..can't find it ??? may have missed the date have been away ?

  • Signed and put on the pages on facebook for you


  • Another signature to your petition, good luck. I am so glad someone has raised this issue as I too have to go through the medical examination, filling in forms which seem to ask the same question, but in another form as its a trap to try and catch you out. I think the condition is NOT recognised enough in the health profession as being serious and not enough is being done about it. Just because you can't see the condition, it does not mean its not there, it affects us all in different ways and its severity differs to each and every individual. Thanks again.

  • Found it ! Did it and FB it ! Well done !

  • Thank you everyone, really helping passing it around and we're now at 167 which is a super good start xxx

  • The petition was retweeted by Dr. Khailash Chand OBE, Frankie Boyle, Victoria Lambert (a journalist who has APS) and a few other groups. Very grateful to them for taking the time to support

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