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Hughes Syndrome APS Forum

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The difficulties of having autoimmune disease either one or several

MaryF profile image
MaryFAdministrator
12 Replies

I have had some truly great care over my life time, but some that has been equally appalling, partly down to lack of understanding about the spectrum of diseases I have, and at times this has caused lack of referral or no care at all.

I truly believe that people can make singularly and collectively make a difference.

I have signed all three petitions AND passed them on to others for further signatures and sharing via email and social networks.

I have three petitions here. Sorry there are three. The first one: A petition started by Dr Rita Pal, the original Staffordshire Whistleblower who lost her job sticking up for the public. The paper her and her medical colleagues wrote, (currently not being noticed by the DOH), is a fairer and more cost effective way forward. Currently patients and medical staff get equally badly treated should they flag up issues. Some discussion and some sorting out with dignity intact on both sides would save money, lives, jobs and patient dignity in the long term. The formal complaints system gobbles up valuable funds and has a poor outcome for both sides.

epetitions.direct.gov.uk/pe...

The second one, affects many of us who have autoimmune disease and is about choice. The standard NHS treatments for thyroid disorders do not work for everybody. To have a choice of cost effective treatments would be better:

epetitions.direct.gov.uk/pe...

and the third one: This is a very good idea, improving the lot of thyroid patients world wide:

worldthyroidregister.com/

Thank you for reading this. Every signature and sharing of petitions helps us all.

Mary F

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MaryF profile image
MaryF
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12 Replies
kathyD64 profile image
kathyD64

Well done for this Mary Kathy x

MaryF profile image
MaryFAdministrator in reply tokathyD64

Great - and thanks x

BrazilianBade profile image
BrazilianBade

Congrats.

MaryF profile image
MaryFAdministrator in reply toBrazilianBade

Thanks and cheers. M x

kateb81 profile image
kateb81

Done :-) xxx

GinaD profile image
GinaD

I did not sign as I feel that a US signature is not quite kosher. Let me know if my scruples are not substantiated. You have and still do quite a lot to improve life for a lot of us and I can not thank you enough Mary.

Gina

MaryF profile image
MaryFAdministrator in reply toGinaD

The first two can't be signed if you are not a UK national... however the third one, can be... and needs world circulated. I have friends all over the world who are signing this and getting it moving. And thanks M x

london-lass profile image
london-lass

The BBC website for May 10th has an interesting article, but I don't know how to post a link!!

Ann

MaryF profile image
MaryFAdministrator in reply tolondon-lass

Thanks: M x

MaryF profile image
MaryFAdministrator in reply tolondon-lass

Do tell me what the article was about and I will try and find it x

london-lass profile image
london-lass

It was to do with having more than one chronic condition. I got it through my CSP bulletin.

BBC may 10th

MaryF profile image
MaryFAdministrator in reply tolondon-lass

I will try and find it, if not somebody else will spy it. and thanks x M

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