Sticky Blood-Hughes Syndrome Support
8,176 members8,391 posts


I am under assessment again since being placed in the support group in November 2011, this is really worrying in particular after suffering many TIAS daily, multiple small strokes culminating into a CVA larger stroke Feb 2011, not only will we all have to explain the APS disease itself and its everyday symptoms, how it it crucial that when we are out of therapyutic range and that we have to be closely monitured as APS patients (many of us) are told we are very hard to control, thus putting us at substantial risk. the biggest problem is getting the health professionals even the specialists to include this in a letter, How do we do this?. Any thoughts on looking for a welfare rights adviser to support the Hughes Syndrome Foundation as one whole. Good luck everyone I now know I am going need it!

9 Replies

One thing that did seem to happen when people went to tribunal and won they where re-assessed very quickly afterwards!!!!!!

Do agree with welfare rights advisor for Hughes syndrome.

sharon xx


I think its really important if you feel strongly about what you saw on those programs last night about ATOS to make your feelings known to your MP's. If there is a big push of complaints now then perhaps they will be forced to do something but nothing will happen unless people react. We can all sit here and moan but we need to direct it appropriately and stop the problem at the source.

The next thing will be ATOS taking over the change of DLA to PIP and they will design that process in exactly the same way in order to get people off of the benefit to save money. Its an utter disgrace.


Yes, well said! Mary F x


Yep I agree ...... It really worries me that if they stop my money I will slide back to how I was 11 years ago in the beginning as I won't be able 2 afford to go to the gym anymore :( I am hoping to work for myself next year but at my own pace.....I can't work for someone else anymore....with good days / bad days (more bad than others at mo') I'm 'unreliable' & no one will want me anyway!!

They've made it go from one extreme to the other basically hav'nt they?!

I shall be mentioning all this to the MP.....when I can get hold of him?!!!!! Xx



Totally agree, what a travesty, what happened to human rights, keep voting on petitions, filling in surveys etc!

Time to hassle a few MPs me thinks!


We the undersigned,

Have contributed to our society since teens,

Working whilst raising our children, missing them grow too....

Put many thousands of pounds into government funds,

And now we find for what?

To discover that when we need help because we're I'll,

We are castigated, persecuted, abused and accused

Of lying, of laziness, or being crazy and imagining it all!!

Walk a few weeks in our shoes, see how they fit,

We believe you'lle find, our shoes are unkind!

And run like the wind, away

And think, phew! thank god, i don't have that!!!

I'm cross and my fingers are running away with me sorry! :-(

I hope all feeling as well as can be today

Take care gentle hugs love Sheena xxxxxx :-) :-) :-)


I agree with all of the above. ATOS assessors must be desperate for a job I couldn't do it my conscience wouldn't allow it.

According to the Dispatches programme the training doesnt leave much to be desired.



Please go to this link and sign before Friday noon (tomorrow 3rd August) if you feel really strongly about ATOS.


I believe my welfare officer is writing to St Thomas on my behalf, could this help you to tracylou ?


Unfortunately when I went to St. Thomas' which is an excellent hospital after I eventually saw the prof I was sent to see I returned only to see others on the team I did have several LA positives but everytime I receive a copy of their letters they keep mentioning that some of my symptoms they cannot attribute to APS??? I have returned now 5 times more and more bloods, this worries me I am on sickness benefits for this illness and being re-asessed. All of my symptoms are posted on this site. I keep asking but have no clear answers, been to see a neuro there had another Lumbar because of the strokes and the question of inflammatory lesions-still waiting results the more I return to the departments, each person I see say a different thing, the Neuro I saw did not even right my health history down correct. I do not think that I will ever get support, sorry I do not think they will help, and god forbid I really would not like anybody to write to them as I think honestly it shall cause more not really know what to do Traceylouxx


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