I have an interview in September with ATOS as my doctor has given me a sick note for two months .... Having had problems getting a diagnosis for the past 6 years I am just wondering if the ATOS medical staff will acknowledge/recognize Em as the debilitating disease it is ? ..... If anyone can give me any advice I would grateful as I have never had any experience with this organization before.
Thanks very much xx
Don't know what an ATOS interview is, but if you have at last been diagnosed then you should take photos and documented reports about EM to show them.
Best of luck
Tilly
I have had EM since 1997, however I have not heard of ATOS. Hope you get the treatment you need to make living with EM less painful . Brian L.
copperowl said:
you need as much backup as you can get from your dr --here's a site that has tons info on it-dla etc--.they even sell books on the topics
good luck hope that helps.many ppl have never heard of it far less have any clue what it's like to live with.
Thank you so much for all your helpful advice ! .... It really is appreciated ! xx
Having now checked up on ATOS interviews I realised that my son in law has been the victim of one of these interviews. They seem to be aimed at stopping you from claiming benefits and there are lots of articles online upholding this view.
My son in law has a severe restriction in movement to his elbow following a car accident (having an operation later this month to replace the whole joint) but was deemed fit for work as he could touch his thumb with each fingertip. The fact that he cannot straighten his arm was not taken into consideration.
I hope your interview doesn't prove so disappointing but you may need to be prepared for the long haul.
Sorry to sound so negative, but forwarned is forearmed.
Thank you Tilly ..... As yet I have not received the appointment date I am trying to garner as much information as possible as you say forewarned is forearmed! ..... xxx
tillyp said:
Having now checked up on ATOS interviews I realised that my son in law has been the victim of one of these interviews. They seem to be aimed at stopping you from claiming benefits and there are lots of articles online upholding this view.
My son in law has a severe restriction in movement to his elbow following a car accident (having an operation later this month to replace the whole joint) but was deemed fit for work as he could touch his thumb with each fingertip. The fact that he cannot straighten his arm was not taken into consideration.
I hope your interview doesn't prove so disappointing but you may need to be prepared for the long haul.
Sorry to sound so negative, but forwarned is forearmed.
Hi Cloudy Skye,
I had my Work Capability Assessment in February. I assume that is the "ATOS interview" you're talking about. It's for Employment and Support Allowance, the new form of Incapacity Benefit, for those who cannot work. If your interview is for the new Personal Independence Payment, which is a benefit for those who have a disability but may be in work, then I know it's pretty similar.
The outcome of the WCA can lead to three different results. You could be put into the Support Group, which means you are unfit for work (or "have limited capability for work and for work-related activity" in their jargon).
You could be put in the Work-Related Activity Group, ("have limited capability for work") which means you have to attend a minimum of five sessions with someone at the JobCentre who is tasked with getting you ready for work. The main problem with the WRAG is part of the benefit (contribution-based ESA) ends after 12 months, whereas if you're in the Support Group, it continues indefinately. There is also a trial in one area of WRAG people having to see a health professional employed by ATOS who is tasked with getting them fit for work. I don't know where this trial is taking place, as the DWP won't tell us.
The final outcome of the WCA is you would be found fit for work and would be transferred to Job Seekers Allowance and would be required to look for work and attend the JobCentre.
The WCA is not a medical. The person doing the WCA may well not be a doctor, they can be a nurse or a physiotherapist. It is a series of questions about what you can and cannot do. They cover things like mobility, manual dexerity and only cover five physical areas.
You have to score the maximum points (usually 15) on at least one of these questions to get into the support group.
The outcome is not decided by the health professional who sees you. The decision will be made by someone with no medical training, at the DWP. By an absolute miracle, at my WCA I got a doctor who actually worked with Prof Jill Belch, one of the foremost experts in EM, so he knew EM very well. He even said I was not fit to work and should never be assessed again. However, the person at the DWP still put me in the WRAG. I appealed and won my case two weeks ago.
The problem for someone with EM is which of the questions they could qualify under. I'd strongly suggest going to this site which has a lot of useful resources, including the list of questions you'll be asked. Remember that you can only qualify under the physical descriptors, unless you have a mental health issue. So even if EM leaves you unable to get out of bed, you can't score points on that question because it comes under mental health descriptors.
I cannot emphasise enough that you must answer all the questions as if it were your worst day. If the person doing the examination asks you to stand, for example, you can tell them that it would hurt too much due to your EM. Telling that you can't do something, which you couldn't do when you're having a flare, even if at that precise moment you could is not lying. I certainly found the stress of the WCA made me flare anyway!
Do not do anything that could trigger your EM. Just explain that it would be too painful for you. Don't think that it's a normal physical examination and that you should battle on or just grin and bear it. If it would hurt you, tell them and don't do it.
Be very wary of questions like "what TV programmes do you watch?" when you're asked to describe your day. They could use your answer to say you can sit for at least 30 minutes, even if you actually watch it lying in bed. Some assessors try to catch people out, because they think that all benefits claimants are lying scroungers. Do not assume that the assessor is on your side, this isn't a normal medical. I can't stress that enough.
I'm sorry that I can't be more positive about the WCA. I don't want to stress you out. I just don't want you to go in to the WCA unprepared and end up being found fit for work.
If you can get a letter from your doctor, specifically stating something like:
"The above patient, cloudy skye, has erythromelalgia, a very rare disorder that causes her intense burning pain. Due to this, she is unable to mobilise 20 meters on level ground. I therefore advise that she be awarded 15 points on the mobility catagory of the Work Capability Assessment and be placed in the Support Group."
I've put a few websites with good articles on EM at the bottom. The Dermnet NZ is a site that doctors often use, I know this because my dad is a retired GP.
If the very worst happens and you don't get put in the Support Group or are even found fit for work, don't panic. Immediately appeal (contact me by PM if that happens) and you'll be put back on the assessment rate and won't have to look for work.
Good luck!
http://emedicine.medscape.com/article/200071-overview#showall
It took months for me to get my date for the WCA. So don't panic just yet! But as you say, that way you know what to expect and can get doctor's letters etc.
Have you had the ESA50 form through yet? It's a booklet of questions about your day, what you can and can't do etc. That happens before the WCA. Be sure to keep a copy, as they tend to lose them. They said I hadn't returned one, but I had actually returned it then sent in another when they said they hadn't got it. If you are sending one in, send it recorded delivery. That way they can't blame you!
cloudyskye said:
Thank you Tilly ..... As yet I have not received the appointment date I am trying to garner as much information as possible as you say forewarned is forearmed! ..... xxx
tillyp said:Having now checked up on ATOS interviews I realised that my son in law has been the victim of one of these interviews. They seem to be aimed at stopping you from claiming benefits and there are lots of articles online upholding this view.
My son in law has a severe restriction in movement to his elbow following a car accident (having an operation later this month to replace the whole joint) but was deemed fit for work as he could touch his thumb with each fingertip. The fact that he cannot straighten his arm was not taken into consideration.
I hope your interview doesn't prove so disappointing but you may need to be prepared for the long haul.
Sorry to sound so negative, but forwarned is forearmed.
Sat here crying .... Thank you so much for all this information .... I have been so stressed out about all this , as the main bread winner we have really been struggling to make ends meet . £71 a week for the two of us no where near covers the household expenses let alone food .... This is a dreadful disease .... I have worked full time all my working life the longest I have been off was the 2 years after my daughter died 7 years ago .... I have never been on the dole before ... I loved my job as a qualified youth worker . I was made redundant in January ... In July I was finally successful in my search for a job it was a fabulous post and well paid I had to phone them up and tell them I couldn't take up the position when I was finally diagnosed with EM .... The doctor put me on meds for pain relief which has been a god send ( I had thought it was all psychosomatic and in my head ) .... He signed me off for 2 months .... After all the research I realize there is no cure there is the odd person who occasionally goes into remission if the primary cause is cured .... My Em is primary .... The gabapentin makes me depressed but it takes the edge off the pain ..... I can't sit (I have Vulvadina Em) stand , walk .... Whats the point? ....
starsmurf said:
Hi Cloudy Skye,
I had my Work Capability Assessment in February. I assume that is the "ATOS interview" you're talking about. It's for Employment and Support Allowance, the new form of Incapacity Benefit, for those who cannot work. If your interview is for the new Personal Independence Payment, which is a benefit for those who have a disability but may be in work, then I know it's pretty similar.
The outcome of the WCA can lead to three different results. You could be put into the Support Group, which means you are unfit for work (or "have limited capability for work and for work-related activity" in their jargon).
You could be put in the Work-Related Activity Group, ("have limited capability for work") which means you have to attend a minimum of five sessions with someone at the JobCentre who is tasked with getting you ready for work. The main problem with the WRAG is part of the benefit (contribution-based ESA) ends after 12 months, whereas if you're in the Support Group, it continues indefinately. There is also a trial in one area of WRAG people having to see a health professional employed by ATOS who is tasked with getting them fit for work. I don't know where this trial is taking place, as the DWP won't tell us.
The final outcome of the WCA is you would be found fit for work and would be transferred to Job Seekers Allowance and would be required to look for work and attend the JobCentre.
The WCA is not a medical. The person doing the WCA may well not be a doctor, they can be a nurse or a physiotherapist. It is a series of questions about what you can and cannot do. They cover things like mobility, manual dexerity and only cover five physical areas.
You have to score the maximum points (usually 15) on at least one of these questions to get into the support group.
The outcome is not decided by the health professional who sees you. The decision will be made by someone with no medical training, at the DWP. By an absolute miracle, at my WCA I got a doctor who actually worked with Prof Jill Belch, one of the foremost experts in EM, so he knew EM very well. He even said I was not fit to work and should never be assessed again. However, the person at the DWP still put me in the WRAG. I appealed and won my case two weeks ago.
The problem for someone with EM is which of the questions they could qualify under. I'd strongly suggest going to this site which has a lot of useful resources, including the list of questions you'll be asked. Remember that you can only qualify under the physical descriptors, unless you have a mental health issue. So even if EM leaves you unable to get out of bed, you can't score points on that question because it comes under mental health descriptors.
I cannot emphasise enough that you must answer all the questions as if it were your worst day. If the person doing the examination asks you to stand, for example, you can tell them that it would hurt too much due to your EM. Telling that you can't do something, which you couldn't do when you're having a flare, even if at that precise moment you could is not lying. I certainly found the stress of the WCA made me flare anyway!
Do not do anything that could trigger your EM. Just explain that it would be too painful for you. Don't think that it's a normal physical examination and that you should battle on or just grin and bear it. If it would hurt you, tell them and don't do it.
Be very wary of questions like "what TV programmes do you watch?" when you're asked to describe your day. They could use your answer to say you can sit for at least 30 minutes, even if you actually watch it lying in bed. Some assessors try to catch people out, because they think that all benefits claimants are lying scroungers. Do not assume that the assessor is on your side, this isn't a normal medical. I can't stress that enough.
I'm sorry that I can't be more positive about the WCA. I don't want to stress you out. I just don't want you to go in to the WCA unprepared and end up being found fit for work.
If you can get a letter from your doctor, specifically stating something like:
"The above patient, cloudy skye, has erythromelalgia, a very rare disorder that causes her intense burning pain. Due to this, she is unable to mobilise 20 meters on level ground. I therefore advise that she be awarded 15 points on the mobility catagory of the Work Capability Assessment and be placed in the Support Group."
I've put a few websites with good articles on EM at the bottom. The Dermnet NZ is a site that doctors often use, I know this because my dad is a retired GP.
If the very worst happens and you don't get put in the Support Group or are even found fit for work, don't panic. Immediately appeal (contact me by PM if that happens) and you'll be put back on the assessment rate and won't have to look for work.
Good luck!
http://emedicine.medscape.com/article/200071-overview#showall
cloudy skye,
*hugs*
I am so sorry about what you're going through. It is appalling that people like yourself are having to go through the extra stress when you're already trying to cope with enough.
Talk to your GP about the fact that as things stand, you cannot work. That way, you could get a better result with the sick line. There is a thing where you can only have short sick-lines for the first six months, then for a year and only after that can they be indefinate.
I'm concerned that you mention that you're only on £71 per week. That's Job Seekers Allowance rate. Have you applied for ESA as someone who cannot work? As things stand, you are not able to work and as EM is, sadly, not a temporary condition, you are not short-term sick on JSA. If you apply for ESA in itself, because you cannot work, you should get a bit more per week.
You also need to look into applying for the Personal Independence Payment (PIP), which is the new form of Disability Living Allowance (DLA). PIP is an in-work benefit, so you can get it as well as ESA and would continue to get it even if you returned to work. If you are unable to mobilise 20 meters without pain and you need care day and night - even if you don't get that care - you can get an extra £531 per month. There are lower rates for those with less severe disabilities but I would suggest that your case qualifies for the full whack.
I'll help you all I can with the benefits process. It can be stressful and it is natural to feel despondent but please believe that it can work out. I am on ESA Support Group (£106 per week) and get DLA at £531 per month. It pays for things like the electricity bill so I can keep cool. Being in the highest catagory of DLA mobility also gives me a Blue Badge which can be a lifeline.
In the short term, I hope we can at least improve your financial situation and by relieving some of the stress, it may reduce your pain a little. Stress is a big trigger of EM flares, it's not in your head, it's just how the bloodflow reacts to the hormones you produce when you feel stressed.
Totally agree with you.I'll help too.but you do have to be prepared for the long haul.this is sadly not going to happen fast.DLA is what you need to boost your income-you will not get anymore money otherwise.
I would advice you to go back to dr get referred for a barrage of tests.I cannot stress how much you need the backup of drs & consultants.Also note most people are turned down for Dla 1st time.Use the Citizens advice service for extra help.they are a fantastic set of people who know the ins/outs of the system.
There will be times you feel like giving up---please dont that is what they are hoping for,The system is a disgrace.have faith huni.use this site for support.don't give up.stay strong, (((Hugs)))
starsmurf said:
cloudy skye,
*hugs*
I am so sorry about what you're going through. It is appalling that people like yourself are having to go through the extra stress when you're already trying to cope with enough.
Talk to your GP about the fact that as things stand, you cannot work. That way, you could get a better result with the sick line. There is a thing where you can only have short sick-lines for the first six months, then for a year and only after that can they be indefinate.
I'm concerned that you mention that you're only on £71 per week. That's Job Seekers Allowance rate. Have you applied for ESA as someone who cannot work? As things stand, you are not able to work and as EM is, sadly, not a temporary condition, you are not short-term sick on JSA. If you apply for ESA in itself, because you cannot work, you should get a bit more per week.
You also need to look into applying for the Personal Independence Payment (PIP), which is the new form of Disability Living Allowance (DLA). PIP is an in-work benefit, so you can get it as well as ESA and would continue to get it even if you returned to work. If you are unable to mobilise 20 meters without pain and you need care day and night - even if you don't get that care - you can get an extra £531 per month. There are lower rates for those with less severe disabilities but I would suggest that your case qualifies for the full whack.
I'll help you all I can with the benefits process. It can be stressful and it is natural to feel despondent but please believe that it can work out. I am on ESA Support Group (£106 per week) and get DLA at £531 per month. It pays for things like the electricity bill so I can keep cool. Being in the highest catagory of DLA mobility also gives me a Blue Badge which can be a lifeline.
In the short term, I hope we can at least improve your financial situation and by relieving some of the stress, it may reduce your pain a little. Stress is a big trigger of EM flares, it's not in your head, it's just how the bloodflow reacts to the hormones you produce when you feel stressed.