Any advive re ATOS (Fibromyagia)

Mabelpye

I have M.E and Fibromyaliga, and I will warn you now, they will try to trip you up! (not literally of course lol) Like I got asked a question along the lines of "Do you talk on the phone". Fortunately I was more switched on that day than usual and made sure to add that I do talk on the phone, but I have to have it on loud speaker because I can't hold the phone up for that long, nor can I talk for long periods of time. Make sure you explain every little thing. Like if they asked how you got to the assessment, they'll be seeing how far you walked, what you were like with opening heavy doors etc. Things like, if you say you came on the bus, they'd assume you can walk to the bus stop, stand at the bus stop for periods on time, stand up on the bus, and walk to your destination, and do the same returning. There are some questions where if you don't elaborate, they'll assume it themselves what you can and can't do. I took my godmum with me, who was a great support, and when they tried to confused me, or I really stumbled with words, she helped me (which the doc I saw was fine with). We also checked when we went in for the assessment, that the doc I was seeing was clued up on M.E and fibro (fortunately he was.... well that's what he said anyway lol) I went in on my crutches, instead of using my wheelchair, and the doc could see how slow and painful my walking was. I can't use a self-propelled wheelchair either, so if I had gone in my chair, it would have meant my godmum pushing me. (tbh, with how uncomfy the chairs were in there, I kind of wish I had taken my own wheelchair lol)

I wish you luck with this hun. It is difficult, and stressful, but it's a big relief once it's over

saving_pennies

I hope your appointment goes 'ok'. I've not been to a medical for years although think I will have to shortly with all the changes. I think it is wise to talk someone with you. Perhaps they could even take notes? Just in case the outcome is not favourable and then you would have a written record of what was said.

I have CFS/ME and specialists suspect I have FM too. I know there are professionals who do not even believe these are real conditions so perhaps you can enquire before you get there if they are aware of the conditions and the variation of impact they have on daily life. I know it is not about the condition but the impact it has on you, but I think the doctor needs to have some knowledge of the condition.

I wonder if it is possible to make a list of impact it has on you and take this with you? I know when I go to normal GP appointments I always leave and then remember I forgot to say something.

Cpt.Scarlet wrote: »

The mobilising test is concerned with how far you can walk OR how far you can propel a manual wheelchair, irrelevant of whether you use or own one.

Using a scooter, does not mean that you are unable to walk, you need to show that you cannot walk more than 200m to start to score points, nor does it mean you do not have the upper body strength to propel a manual wheelchair, in fact it could be argued that unless you have a scooter with power steering, it actually suggests you do.

I know the doctor assumes if you get the bus you can walk from the bus stop, and I wouldn't be surprised if the parking in the carpark was 200 meters from the building/room and I bet they will know the exact distance! If someone goes in a scooter or chair how do they assess how far they can walk? I can say I can't walk but to show they would involve me standing whilst holding on to anything solid and then rapidly falling on the floor as I attempt to walk more than one step. Surely they wouldn't expect me to do this in order to prove I can't walk?

As for upper body strength to propel a wheelchair - I guess unless they have a manual chair there, or the person goes in a manual chair, then how do they know?

sunnyone

Cpt.Scarlet wrote: »

To drive a scooter, you need at least one arm, usually both, elevated to hold the handle bars and you need to exert force from your upper body to turn the handle bars and consequently the wheels.

I'm no expert on electric wheelchairs, but my impressions is that they are controlled using a joystick on one of the arms, only a little force is required to move the joystick and any turn is powered by the motor.

PS. My point in the previous post is that, whilst people should be concerned about the assumptions that ATOS will make, they are looking at the mobility test from the wrong direction.

It takes less effort to control my electric wheelchairs than it takes to breath, I can do it with one finger tip without moving my hands at all.

saving_pennies

sunnyone wrote: »

It takes less effort to control my electric wheelchairs than it takes to breath, I can do it with one finger tip without moving my hands at all.

I second that! The joystick on my chair is so sensitive. I can easily move around my home only by moving the joystick about 3-5 millimeters (obviously not measured this precisely and it could be much less!)

sangiar

Mabelpye wrote: »

I have M.E and Fibromyaliga, and I will warn you now, they will try to trip you up! (not literally of course lol) Like I got asked a question along the lines of "Do you talk on the phone". Fortunately I was more switched on that day than usual and made sure to add that I do talk on the phone, but I have to have it on loud speaker because I can't hold the phone up for that long, nor can I talk for long periods of time. Make sure you explain every little thing. Like if they asked how you got to the assessment, they'll be seeing how far you walked, what you were like with opening heavy doors etc. Things like, if you say you came on the bus, they'd assume you can walk to the bus stop, stand at the bus stop for periods on time, stand up on the bus, and walk to your destination, and do the same returning. There are some questions where if you don't elaborate, they'll assume it themselves what you can and can't do. I took my godmum with me, who was a great support, and when they tried to confused me, or I really stumbled with words, she helped me (which the doc I saw was fine with). We also checked when we went in for the assessment, that the doc I was seeing was clued up on M.E and fibro (fortunately he was.... well that's what he said anyway lol) I went in on my crutches, instead of using my wheelchair, and the doc could see how slow and painful my walking was. I can't use a self-propelled wheelchair either, so if I had gone in my chair, it would have meant my godmum pushing me. (tbh, with how uncomfy the chairs were in there, I kind of wish I had taken my own wheelchair lol)

I wish you luck with this hun. It is difficult, and stressful, but it's a big relief once it's over

When I had my ESA assessment I tried to explain in more detail with each question, but was interupted all of the time by the assessor saying that he only required a yes or no answer!

So that's what he got! There was no point in saying anything else as the computer he was using only asked for that type of answer - well that's what he told me - I suppose he could have been lying to avoid having to type out my long winded explanations.

I received 0 points for all of it!

vikki_louise

My advice would be, do your best but prepaid to be turned down, then appeal. Mist of my friends with different levels of ME and fibro were turned down but got it on appeal

rogerblack

sangiar wrote: »

I suppose he could have been lying to avoid having to type out my long winded explanations.

I believe he was.
My medical has in-depth answers typed by the HCP.
I would suggest a complaint.

Mabelpye

sangiar wrote: »

When I had my ESA assessment I tried to explain in more detail with each question, but was interupted all of the time by the assessor saying that he only required a yes or no answer!

So that's what he got! There was no point in saying anything else as the computer he was using only asked for that type of answer - well that's what he told me - I suppose he could have been lying to avoid having to type out my long winded explanations.

I received 0 points for all of it!

The guy I saw definitely typed lots down, so either he was pretending, or it was actually more than just yes/no answers. When I went, I was 4/5 months pregnant too, so he probably didn't dare interrupt me hehe