Atos appointment - advice please: I have finally... - LUPUS UK

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Atos appointment - advice please

loopy-lou profile image
11 Replies

I have finally after 6 months been given a date for my Atos appointment. I mentioned this to my new GP today (who has signed me off work for a further 2 months). He made it sound very simple and straightforward saying I am not exactly going along with backache. This was reassuring on his part as he seems to realise the problems with lupus and fibro that I have. However, I would appreciate any advice/support for this as I have read all sorts of things. What do I say...what perhaps should I not say. I have good days to very bad days with lead legs and having to crawl upstairs, spitting up blood etc. My concern is I look glowing (I think), certainly not ill. I thought I may need to take a letter from my GP but he said they would write to him if they wanted information. All advice very much appreciated x

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loopy-lou profile image
loopy-lou
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11 Replies
mstr profile image
mstr

Hi Loopy-lou, I had my appointment months ago and received the ESA following it. I got asked questions relating to a number of different areas: physically and emotionally. Things like could I get change out of my purse, did I still see friends, did I still read? what physical difficulties I had. I explained my terrible fatigue symptoms. I did indeed find difficulty getting change out of my purse as my hands hurt. I read yes, but that (at the time) I had difficulty concentrating and had to read and reread the same paragraph. When they ask do you still see friends I'm guessing they are checking for emotional difficulties and whether depression is apparent. They also did a physical test on me. I had to stand up, raise hands above head, and do a little strength test such as push against her fingers etc and she also examined me and I told her what parts of me were tender etc. I explained that I was seeing the rheumy and that things were not clear yet etc but that I had gone from working full time and active to having so many symptoms. I also explained about joint pain/muscle aches etc. I think they give you certain scores for each section. There is information on the on the internet (that I found after the test). If you look for ESA appointments and medical examination you may find it. Basically I think you have to have a certain score. They assess all the above areas so don't be afraid to say how your condition has affected you mentally (if you are low), and if you are physically struggling then say...such as you can't shop, can' carry bags, need help with food prep as you are so untired etc to do all of this. I think looking back I underestimated how I was at the time so the main issue is to really thing about all the areas in your life that are now difficult because of your condition. I was honest and said that not every day was the same but the types of things I was struggling with etc. I found my examiner to be very understanding. I hope this helps a little - good luck xx

Alexandria profile image
Alexandria in reply to mstr

I have been diagnosed with SLE/Fibro for 12 yrs now. I have been through the mill with regards to ATOS ..... I am sure that you will have seen/heard the negative press about the interviews ... afraid it is all true. All you can do is follow the advice given by mstr but I would also get anyone treating you your consultant/GP/Osteo?physio etc to write a report advising on what problems you are being treated for and how it affects you. I would not rely on ATOS to make the enquiry for you as you need to be proactive in this area. Additionally I would never advis that you "over egg" your condition but just stress how badly it makes you feel mentally and physically this will help to ensure that they find the right "tick Box" on their form. I fought ATOS twice and won on both occassions (mentally stressful) but alas in May 2012 I was thrown off Contribution based ESA under the 365 day rule (sickening as I am 48 and worked for 32yrs) but luckily I get DLA so can just keep my head above water. Good luck

mstr profile image
mstr in reply to Alexandria

I found your info re ESA interesting Alexandria as I am being thrown off ESA in August as am also contributions based as I have also worked for 30 years. I did apply for DLA previously at the early stages but was turned down. I will pursue this if my walking difficulties continue though. I am only 49 and have also never claimed from the government in my life so I wish I could have remained on this for another year until a full diagnosis was complete. Regards.

Alexandria profile image
Alexandria in reply to mstr

Unfortunately the Welfare Reform Act scuppered support for those of us who have paid into the system but if you have contributed little or nothing and are income based you can claim indefinitely....so... unfair . It does make a mockery of doing the right thing. It is par for the course them turning you down for DLA first time. Don't give up but do the work to gather information to send to them with your application. I spend all of my DLA on Osteo treatment(£40.00 for half an hour) as it keeps my muscles supple inbetween the Nerve Blocks.

mstr profile image
mstr in reply to Alexandria

Yes, I know what you mean about the unfairness of the 'system'. The DLA route may definitely be a consideration in the future. Thanks.

loopy-lou profile image
loopy-lou in reply to Alexandria

I was told actually at the job centre that DLA is turned down the first time as part of the course. This is such a ridiculous situation. The only reason I haven't applied is I have some reasonable days then days when I have awful lead legs - cannot manage stairs/fatigue/etc. Interesting re Osteo treatment.

loopy-lou profile image
loopy-lou in reply to Alexandria

Hi Alexandria

Many thanks for your advice which is greatly appreciated. I was concerned as exactly as you mention all the press is negative. I feel I am in a difficult situation just having changed GP's due to a move and also waiting to see a new consultant. I did mention perhaps a letter to my new GP who is very pleasant but I have only met him briefly twice and he simply said ATOS would write to him if they felt they needed to. Do you think I should ask again giving him all my problems. (He knows of some.) I have been thinking of applying for DLA (suggested by the job centre). I feel this is something I will do now that my mobility is being effected. I am 54 and find it all very stressful on top of lupus & fibro. Well done for winning on both occasions-I don't have the energy for it all!x

Alexandria profile image
Alexandria in reply to loopy-lou

Unfortunately this is what the DWP rely on as they know that they are catching people at their lowest. I think you have nothing to lose by approaching you GP he should be able to see notes from your prior practice so it shouldn't be a megga problem. For the future ensure that you keep copies of any documentation that is produced in regards to your health as DLA will soon be PIP and the various DWP agencies do not share information with each other. Ensure all agencies you deal with (now and in the future) get a copy to go into their files. Hope this helps.

loopy-lou profile image
loopy-lou in reply to mstr

Hi Mstr

Thank you so very much for your detailed reply. It has certainly given me things to think about. I wouldn't have thought about saying I have to look something up several times as I forget things. I did that only this morning. I am going to start keeping a more detailed note of my day to day abilities. Like you I vary. I have days unable to leave the house and days when I can do far more. I hope that I am fortunate in having a pleasant and understanding examiner. Did you take someone along with you? xx

Alexandria profile image
Alexandria in reply to loopy-lou

Always do take someone with you if you possibly can as another person who knows what you are like can be essential as they will often come up with bits of information which in our "brain fog" moments we forget to mention until we are back home. Don't be fooled by a pleasant smile from them when you go in as the first thing they ask is "how did you get here?". This is calculated to establish if you can make your own way to the examination. If you say you came under your own steam....they will put a cross in the box (0 points). They, unlike you, will judge by first appearance. If you can get there and you look okay there can't be much wrong. Please stress that the day is a good one for you as you would not be there. I was advised by a Judgement officer once my benefits had been reinstated that they are not interested in your condition itself as they know what this is, but they are interested in your functional capability. Good Luck

mstr profile image
mstr

Hi Loopy-lou, I'm glad this helped. My dad took me to the appointment but didn't come in. He wanted to help, bless. By the way they also asked how I got there because this gives them an idea of your walking ability etc. Like you said probably a good idea to break your day down right from when you get up. Even down to motor skills (writing, holding a pen, moving heavy pots, inability to lift things. I also note from the report that I got back that they take into account how you take your jacket/coat off. PS I am going to privately message you further details. Marion

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