I'm hoping to have more, or better content to put in this letter. I have posted my MPs offer on several M.E. groups. I was expecting to have billions of suggestions, after all everyone keeps complaining about how the system works. Not a whisper! People are so quick to complain, but never actually want to do anything about it. So, here's my reply so far. If I don't have any suggestions by the time I get back from G's (coz I'll not have internet access for the week) I'll be sending it like this:
Thank you for your swift reply. I do appreciate that your records do not go back to 2003. Thank you for taking the time to look into it anyway. As it happens, since I wrote to you I have received a letter from the DWP stating that they have overturned their decision regarding the outcome of my assessment. They have now placed me in the Work Related Activity Group for Employment & Support Allowance. I still feel this decision is totally wrong, but I dare not rock the boat in case they decide to revoke any ESA at all.
I have included for you a copy of the medical assessors notes from the medical assessment I attended for ESA. It is 28 pages long, so obviously I do not expect you to read all of it. I have given you this for a few reasons. My first reason is personal. I did some reading before attending the medical assessment. I kept seeing reports from people who said that the assessor had lied in their assessment, but I did not believe it. I assumed people were exaggerating. They were not. The person who assessed me has not only completely fabricated ‘evidence’, but twisted things I said, jumped to conclusions, contradicted herself, and worst of all blanked the existence of my back problem all together. When I first read through her notes, I had a severe panic attack, completely losing awareness for twenty minutes or more. I have added annotations to the notes to show how misleading they are. I have tried to remain passive, but it is not easy to do so. I applied for DLA soon after applying for ESA, not because I want the money, but because I really need a blue badge. DLA was declined me based upon the medical assessors report, which I was in the process of appealing. I was under the impression that DLA could not use the ESA medical assessment for evidence, as they are not assessed by the same criteria. I am disappointed, but too exhausted to appeal another decision. I understand from your letter that you cannot raise my own case with the appropriate government minister; I merely wish for you to see my own case, and understand how misleading the assessment is, and the ramifications it can have elsewhere (i.e. DLA application and my subsequent health).
My second reason is that I am a little confused over how these assessments work. I was not particularly surprised to find, when talking with other people who have CFS / M.E., that our assessments were coming out similarly. However, when speaking to someone with a completely different condition, in a different area of the country, I was alarmed to find that our medical reports are nearly word for word identical. How can that possibly be, unless medical assessors are actually told what to write on reports before they meet clients? I would be happy to gather evidence of how similar these reports are for you, if you would be interested.
Having read the guidelines on how medical assessors are taught to assess CFS, I am very disturbed. Assessors are given the choice of deciding whether CFS is a physical condition, a mental condition, or a combination of both. They are not told what it is! It is classified by the World Health Organisation as a neurological condition; that would make it a physical condition. If assessors aren’t actually told what it is, how are they supposed to assess accurately the condition?
A huge problem with these assessments is that they simply are not designed to assess fluctuating conditions. They should not even be trying to do so. CFS is a relapse remission condition. That means by definition that tick boxes cannot assess it. Obviously, in order to be able to attend a medical assessment in the first place patients have to rest, and prepare; they are only seen at their best. For myself, I can tell you that I tried to rest for two days before the assessment, but actually got no sleep the night before due to anxiety. I was so stressed by the assessment that it caused me to be bed-bound again for two weeks; which meant that I was still in a very bad condition caused by the assessment when I was phoned to tell me that I had failed the assessment. Fluctuating conditions can’t be assessed in a 30 or 40 minute interview; they would require at the very least a day with the person at the assessment centre. The problem then though is that many people with CFS cannot cope with light, or sound, or motion, so they would need a special room in which to spend that day. For this reason it surprises me that home assessments are not permitted, and that letters from the doctors who know their patients best are disregarded.
Another problem with the assessments is that if you do not attend you automatically fail. Yet you are not given a means of contacting the assessment centre to inform them that you cannot attend if you are too unwell to do so. I had this problem a few years ago.
As an aside, I think it is somewhat irresponsible of ATOS Healthcare to have the medical assessors names on the medical assessments that are sent out to patients. People hold the assessors personally responsible for the stress caused, with good reason in most cases. On one of the forums I am a member of I have seen people start to name their assessors. A simple Google search turns most of them up on Facebook or NHS websites. By including their names on the assessments these people are possibly being placed in danger. Perhaps using a reference number for the assessors would be a safer and more sensible option.
The statistics I am reading show that something like 69% of people are failing at the medical assessments. However, if I remember correctly over 40% of those are then reinstated at tribunal. There is a number somewhere in between that have the decision overturned before it reaches tribunal, like myself. And the rest are being placed on Job Seekers Allowance, where the majority of those I’ve spoken to are treated very kindly by advisors who recognise that they are too ill to work anyway. I don’t see how any of this is saving the government money. People either end up with the same amount of money (ESA start rate and JSA are the same amount), or with more money (the rates paid after a successful medical assessment is higher). If the original assessment was more accurate, then a lot less people would need to appeal; every appeal process will be costing the government money. Presumably the tribunals, having three people on the panel, rather than the one medical assessor, are a lot more expensive. The really annoying part of this, is that the only figures that find their way to the headlines are those stating that 69% of people claiming sickness and disability benefits are failing the medicals; suggesting to the general public that 70% of us are fakers. All this seems to be achieving is an unpleasant prejudice towards people whose lives are already very difficult, if not unbearable. I am not sure whether it has occurred to the government that causing people with illness more stress, will make them more ill, and therefore less likely to return to work. To go through this nightmarish process we have to put our lives on hold for months, sometimes over a year; that means putting any recovery on hold, and more often than not taking huge backwards steps because of the stress. I would like to point out that before I became ill, I was earning £15,000 per annum. At the time Incapacity Benefit was approximately £42 a week; would it really be worth my while faking an illness in order to reduce my income by £12,000?
Most people who have written letters such as these to their MPs have received a short letter in return claiming that ATOS are a responsible organisation doing a good job. I’m sorry, but as someone on the receiving end I can’t take that answer. I would like to suggest that if the government is not already doing so, they implement something similar to a Mystery Shopper, to test ATOS. Obviously it would need to be done by people who are genuinely incapacitated. I do not think it would cost the government money, as there are plenty of people who would be more than willing to volunteer.
I think, since I am on my third page to you, that will be enough to be going on with. I am not sure these are the sort of things you had in mind. Just to summarise for you:
On a slightly different note, I am wondering whether you may be interested to learn about M.E & CFS yourself. If you have a couple of hours spare next time you are within the Lichfield area, I would very much like to talk with you about the condition. There is so much misunderstanding and confusion regarding it, that it would be particularly useful to have a member of parliament with an understanding.
I have included for you a copy of the medical assessors notes from the medical assessment I attended for ESA. It is 28 pages long, so obviously I do not expect you to read all of it. I have given you this for a few reasons. My first reason is personal. I did some reading before attending the medical assessment. I kept seeing reports from people who said that the assessor had lied in their assessment, but I did not believe it. I assumed people were exaggerating. They were not. The person who assessed me has not only completely fabricated ‘evidence’, but twisted things I said, jumped to conclusions, contradicted herself, and worst of all blanked the existence of my back problem all together. When I first read through her notes, I had a severe panic attack, completely losing awareness for twenty minutes or more. I have added annotations to the notes to show how misleading they are. I have tried to remain passive, but it is not easy to do so. I applied for DLA soon after applying for ESA, not because I want the money, but because I really need a blue badge. DLA was declined me based upon the medical assessors report, which I was in the process of appealing. I was under the impression that DLA could not use the ESA medical assessment for evidence, as they are not assessed by the same criteria. I am disappointed, but too exhausted to appeal another decision. I understand from your letter that you cannot raise my own case with the appropriate government minister; I merely wish for you to see my own case, and understand how misleading the assessment is, and the ramifications it can have elsewhere (i.e. DLA application and my subsequent health).
My second reason is that I am a little confused over how these assessments work. I was not particularly surprised to find, when talking with other people who have CFS / M.E., that our assessments were coming out similarly. However, when speaking to someone with a completely different condition, in a different area of the country, I was alarmed to find that our medical reports are nearly word for word identical. How can that possibly be, unless medical assessors are actually told what to write on reports before they meet clients? I would be happy to gather evidence of how similar these reports are for you, if you would be interested.
Having read the guidelines on how medical assessors are taught to assess CFS, I am very disturbed. Assessors are given the choice of deciding whether CFS is a physical condition, a mental condition, or a combination of both. They are not told what it is! It is classified by the World Health Organisation as a neurological condition; that would make it a physical condition. If assessors aren’t actually told what it is, how are they supposed to assess accurately the condition?
A huge problem with these assessments is that they simply are not designed to assess fluctuating conditions. They should not even be trying to do so. CFS is a relapse remission condition. That means by definition that tick boxes cannot assess it. Obviously, in order to be able to attend a medical assessment in the first place patients have to rest, and prepare; they are only seen at their best. For myself, I can tell you that I tried to rest for two days before the assessment, but actually got no sleep the night before due to anxiety. I was so stressed by the assessment that it caused me to be bed-bound again for two weeks; which meant that I was still in a very bad condition caused by the assessment when I was phoned to tell me that I had failed the assessment. Fluctuating conditions can’t be assessed in a 30 or 40 minute interview; they would require at the very least a day with the person at the assessment centre. The problem then though is that many people with CFS cannot cope with light, or sound, or motion, so they would need a special room in which to spend that day. For this reason it surprises me that home assessments are not permitted, and that letters from the doctors who know their patients best are disregarded.
Another problem with the assessments is that if you do not attend you automatically fail. Yet you are not given a means of contacting the assessment centre to inform them that you cannot attend if you are too unwell to do so. I had this problem a few years ago.
As an aside, I think it is somewhat irresponsible of ATOS Healthcare to have the medical assessors names on the medical assessments that are sent out to patients. People hold the assessors personally responsible for the stress caused, with good reason in most cases. On one of the forums I am a member of I have seen people start to name their assessors. A simple Google search turns most of them up on Facebook or NHS websites. By including their names on the assessments these people are possibly being placed in danger. Perhaps using a reference number for the assessors would be a safer and more sensible option.
The statistics I am reading show that something like 69% of people are failing at the medical assessments. However, if I remember correctly over 40% of those are then reinstated at tribunal. There is a number somewhere in between that have the decision overturned before it reaches tribunal, like myself. And the rest are being placed on Job Seekers Allowance, where the majority of those I’ve spoken to are treated very kindly by advisors who recognise that they are too ill to work anyway. I don’t see how any of this is saving the government money. People either end up with the same amount of money (ESA start rate and JSA are the same amount), or with more money (the rates paid after a successful medical assessment is higher). If the original assessment was more accurate, then a lot less people would need to appeal; every appeal process will be costing the government money. Presumably the tribunals, having three people on the panel, rather than the one medical assessor, are a lot more expensive. The really annoying part of this, is that the only figures that find their way to the headlines are those stating that 69% of people claiming sickness and disability benefits are failing the medicals; suggesting to the general public that 70% of us are fakers. All this seems to be achieving is an unpleasant prejudice towards people whose lives are already very difficult, if not unbearable. I am not sure whether it has occurred to the government that causing people with illness more stress, will make them more ill, and therefore less likely to return to work. To go through this nightmarish process we have to put our lives on hold for months, sometimes over a year; that means putting any recovery on hold, and more often than not taking huge backwards steps because of the stress. I would like to point out that before I became ill, I was earning £15,000 per annum. At the time Incapacity Benefit was approximately £42 a week; would it really be worth my while faking an illness in order to reduce my income by £12,000?
Most people who have written letters such as these to their MPs have received a short letter in return claiming that ATOS are a responsible organisation doing a good job. I’m sorry, but as someone on the receiving end I can’t take that answer. I would like to suggest that if the government is not already doing so, they implement something similar to a Mystery Shopper, to test ATOS. Obviously it would need to be done by people who are genuinely incapacitated. I do not think it would cost the government money, as there are plenty of people who would be more than willing to volunteer.
I think, since I am on my third page to you, that will be enough to be going on with. I am not sure these are the sort of things you had in mind. Just to summarise for you:
- Medical assessors appear to be fabricating medical assessments, which is a very worrying problem.
- I think the guidelines on how M.E. / CFS is assessed need to be reviewed.
- A completely different assessment design is required to assess fluctuating relapse / remission conditions.
- People asked to attend medical assessments need to be able to contact the medical centres on the day if they are unable to attend the assessment.
- Medical assessors names should not be on the notes sent to claimants, for their own safety.
- The statistics are being handled irresponsibly.
- The process is making people more ill, and causing widespread prejudice within the general public.
- A Mystery Shopper style test of ATOS would be appreciated.
- I think the guidelines on how M.E. / CFS is assessed need to be reviewed.
- A completely different assessment design is required to assess fluctuating relapse / remission conditions.
- People asked to attend medical assessments need to be able to contact the medical centres on the day if they are unable to attend the assessment.
- Medical assessors names should not be on the notes sent to claimants, for their own safety.
- The statistics are being handled irresponsibly.
- The process is making people more ill, and causing widespread prejudice within the general public.
- A Mystery Shopper style test of ATOS would be appreciated.
On a slightly different note, I am wondering whether you may be interested to learn about M.E & CFS yourself. If you have a couple of hours spare next time you are within the Lichfield area, I would very much like to talk with you about the condition. There is so much misunderstanding and confusion regarding it, that it would be particularly useful to have a member of parliament with an understanding.
Kind regards,
Olana Voljeti
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