Sticky Blood-Hughes Syndrome Support

My story so far - Migrating from Incapacity to ESA

On Feb 6th this year, 2012 I went for my medical assessment. The journey took more than 2 hours to get there. (Guidelines state that no more that 90 minutes is acceptable). That in itself very nearly killed me. I then had to wait nearly 1 hour to be seen. To be fair the Doctor here in Spain was attentive and listened and seemed to be very well informed about Hughes SLE and other related diseases. I then had another 2 hour journey home. At which point I collapsed and as a result I suffered yet another thrombosis in my left leg and was hospitalised for 2 months, where I also had another heart attack. Best place to have one I suppose!!!! To date I still have not received an a letter/phone call confirming if I have been awarded ESA or not. The stress of waiting is nearly killing me it's 5 months now. How come we are summonds to attend medicals/interviews etc with the threat of our benefits being withdrawn but we are yet again treated like cattle and left in the wilderness wondering what will happen? More sleepless nights I suppose. I am so tired at the moment I feel I could die just from sheer exhaustion yet alone all my other problems. Has any one else had similar experiences?

6 Replies

Oh Yes, think I went for my medical here in France last June/July got a letter back in January saying they needed more information so my GP in France wrote and so did I updating them......still heard nothing!!! Just preparing for an appeal I guess!!!!


Hiya! I also had my medical assessment with ATOS in February this year, but had the result by letter within 3 weeks. You really need to chase up the result so that you know what's going on, but maybe you can tell by the amount being paid to you through your bank? If not, try and phone the disability adviser at the JobCentrePlus (if you can get through!!)

I hate the thought of you having to do the chasing when you are feeling so poorly - almost 6 months of this extra agony for you now - but in my experience it seems that my hardest fights for medical attention, diagnosis, advice on my medical discharge from work, DLA, and now ESA, have all taken place when I am at my weakest, most confused, most scared and during a downturn in my already downward facing health!!

On a positive note, I was placed in the group that said I was capable of work-related activity, but not work, but this meant that, as I had dared to be disabled for over 365 days (not a year or 12 months, but 365 days!!!!) my money was stopped, even though I am unable to walk further than 10 metres alone, am housebound and have a long history of DVT and stroke.

I appealed and my tribunal was due on last Friday afternoon, but that morning I had a phone call to say the panel had reviewed my 'evidence' (guilty of being disabled, obviously!) and found in my favour and I did not need to attend the Tribunal. I am being placed in the Support Group (where it appears you get no support at all) but my money is being reinstated. I tell you this just so that you know that this is a fight that people can win, so you will not be wasting your efforts if you persue it.

Good luck, and take care of you. Larraine x


Sorry to hear about this, such a dire situation for everybody and being condoned by dreadful politicians. Please do keep us informed, and I do hope you have good friends and relatives around you. Mary F x


I am pleased you got there in the end Larraine but you shouldn't have had to experience so much stress.

I am afraid I don't know anything about how the Spanish or French authorities deal with disability so not much help.


As British Citizens we are treated the same as everyone in the UK regarding benefits. The only difference being that any British Citizen has the right to live anywhere they choose in the European community and continue to receive benefit if they were already receiving it before they left the country. However, if the Government have their way this option will be withdrawn. If this does happen all my health care here in Spain will be withdrawn too. As I am unfit for work whether I live here with my husband, who happens to be Spanish, or in England is neither here nor there. I will not be eligible for any help what so ever under the Spanish health system as the law has tightened up here too. I have been in receipt of Incapacity and DLA since 1995 for Hughes, SLE, chronic cardiovascular disease, arthritis, osteoporosis and much more - how ill do we have to be before we can just be left to get on with our lives?


I am also in the same situation in France! I received Incapacity benefit from 2005 for an accident at work which the French doctors said due to trauma has given me aps and Sjogren's and many other problems as I have a metal plate in my neck! and lower spine problems. Had knee replacement due to arthritis last November and now also have chronic regional pain syndrome and only 90% bend in my leg....but not all the time!!! of course all my drugs and treatment is covered by UK and if I lose my benefit I will be without my drugs!!!! saying that we do have to still buy a top up insurance at 600-700 euros a year! Of course I would love to work if I could...I am sure I dont need to go into all the symptoms these diseases give us! I worked from the age of 16 untill I had and accident at work at 45 and paid all my taxes an NI......I never ever thought for a minute all this would happen to me! thought I would have my neck surgery and be back at work!!!! The reason I came to France as that I could not pay my mortgage in the UK and could afford to buy outright here not because I wanted to leave friends and family behind!!!!! such a long slog and I feel I have never ever been left alone by DWP!!! I have to appeal for my industrial accident benefit but at appeal the second time!!!!! I was awarded for life......the whole £30 pounds a week!!! of course I can live on that!!!!! I have always waited for ages for any response here in France it seems to be normal!!!! and also it is not ATOS that does the medicals abroad! I had a right witch!!!!! so will be interesting to see final she did not look at any of my piles of medical notes or MRIS or x-rays I took with me.....I even asked her if she was going to which she replied NO!!!!! difficuly abroad as we have no one fighting for us or to go to to help with the forms etc!! we just have to wait! like I said its been nearly a year for me but at least I have been paid in that time!!!!! what an essay!!!!!!:/ but you are not alone!!!!!


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