Vindicated!!!!

If you click on the title of this post it'll take you to the following newspaper article. I'm copying it here too, because I have a sneaky suspicion that such honest publishing may well be withdrawn. A quick overview; the government should have claimed back 50 million pounds from ATOS Healthcare because they have failed so badly with the medical assessments. They have not claimed the money back. My personal feelings on this are that it is being recognised how badly ATOS are treating us; that in itself is a result. I would like the government to claim back the money and stop penalising the little people for pennies, but I have no control over that. I would also like the figures in the article to be much more widely published, though I suspect the public will not be interested to hear that we are NOT faking malingerers. Ho hum.

"BUNGLED rulings by the private firm deciding whether benefit claimants are fit to work are costing taxpayers s50million, we can reveal.

The Government have been urged to claw back millions from the contractors after they wrongly assessed thousands on disability benefits.

Atos Healthcare is being paid s100million a year by the Tories to reassess people claiming disability and sickness benefits.

But around 30,000 people appealed against their decisions, with 40 per cent of them successful, which has cost the government around s50million.

The Department for Work and Pensions' contract with Atos allows it to recoup money from the firm for poor medical advice.

But UK employment minister Chris Grayling has admitted not a single penny has been claimed back.

Quizzed by Labour's Tom Greatrex, he said Atos "have met all of their targets for medical advice".

Greatrex, MP for Rutherglen and Hamilton West, said: "The Toryled Government's failure to provide the taxpayer value for money is disgraceful and the attitude of the minister responsible for this defies belief.

"To suggest Atos has met its targets when it is needlessly costing the taxpayer millions is unacceptable. "It is astonishing that the Government did not recoup a single penny of taxpayer money from Atos, despite its obvious failings.

"At a time when the welfare budget is being slashed by billions, many people will be surprised that the government is not demanding repayment from a multimillionpound international organisation. "The Government is very quick to demand money back from welfare recipients who don't live up to their responsibilities. They should do likewise with Atos."

DWP's contract with Frenchowned Atos allows the government to "apply financial remedies" where the firm has "failed to meet contractual targets".

A dwp spokeswoman said: "If a decision is overturned at appeal, it does not necessarily mean that the original decision was inaccurate.

"Often, customers produce new evidence at their appeal."

Atos said it had nothing to add to the DWP's statement.

We revealed in March how Glasgow GP Margaret McCartney went undercover at an Atos recruitment evening.

She was told: "You are not in a typical caring role. This isn't about diagnosing. We don't call them patients. We call them claimants.""

Optogenetics

This looks quite exciting. A friend of mine gave me this link on Facebook earlier today. It doesn't mention CFS / ME at all, but I can see where her thinking goes with this.

Click here to watch the clip.
(It's only five minutes long).

It is not something likely to happen during my life time. These sorts of research take decades to develop. Once they have developed a treatment for one condition though, I suspect others will come fairly quickly. CFS / M.E. is not going to be top of the list of priorities; the cause of it really needs to be identified correctly first. Hopefully by the time that Optogenetics is developed, the cause of M.E. will have been properly identified.

Meanwhile, I'll just keep treating my symptoms and listening to my body.

Better Drawn

 

Borrowed from Better Drawn, who says:

“From a hopeful, mostly-recovered-but-fluctuating ME/CFS sufferer who occasionally stumbles headlong back into ‘the pit’. ‘The pit’ is what some mild/moderate sufferers call ‘crashed’. Severe sufferers are always in ‘the pit’ and can’t climb out. ‘But you don’t look ill’ is the one of the main dismissive statements, along with ‘everyone gets tired’, that ME/CFS sufferers hear. This image reflects what some of my ME/CFS acquaintances have experienced at some time during their illness, especially when trying to claim welfare benefits.”

G moved house

I knew before I met G that he was looking to move house. In fact, we had a conversation, which in retrospect, is quite funny, a few days before we actually met for the first time. We were discussing rental properties. He was looking to move soon, and I was thinking about what will happen when this house sells. One of the properties he was looking at said 'no pets'. I said I would not even consider a house that said no pets. He responded that he wasn't inviting me to live with him. It flustered me at the time, but given that he has now invited me to live with him, I am tickled. I don't think he remembers the conversation though.

Well, a couple of months ago, he viewed a house that he fell in love with. It's a little white cottage, part of a small terrace, set back from the road. It faces fields, and is in a beautiful little village. The kind of village that aims to win 'best kept village' and has an alarming number of WI meetings. He was already invited to join the fox hunt meetings.

He took a week off from when he moved house, and invited me to spend the week with him. The intention was to help him set up the house, unpack etc. I was very nervous. At most we'd only spent about 36 hours together; spending nine days together was daunting.

I can't really remember the beginning of the week. To get to his house it's literally turn out of my village, follow the same road for an hour, and turn into his road. Fantastic. Don't even need SatNav. I think I was having a good day, coz I enjoyed driving there.

My first proper memory is the Monday. It was the only day G actually had to work that week. When he'd moved in he'd sort of just dumped the furniture, boxes, and bags everywhere. He'd shuffled the furniture around a few times over the weekend, but was undecided on what he wanted to do. We discussed on the Sunday evening a final decision regarding furniture. So come Monday, while he was at work, I set about sorting the bags and boxes into the relevant rooms, and then sorting out the living room furniture. I am absolutely gobsmacked in retrospect, at how much I did, especially given how bar I'm feeling today. I expected to crash badly the next day, but I didn't. We managed to do bits of shopping in the week, and play board games, and watch DVDs. It was only as it got towards the end of the week that I started to come down somewhat. I spent all day Saturday in bed, and wasn't exactly very well on Sunday, but managed to drive myself home. As soon as I walked back into this house I just crashed completely.

I have to say, we really didn't get much done. Apart from what I did on the Monday, I don't think we actually did anything practical in the house. I have been back again the weekend just gone, and made him a list of tasks to do this week, so we at least have progress.

I don't really understand what is happening to me. When I'm with G I feel a lot better. I hope I'm not being an energy vampire; I keep asking him if I'm tiring him out, but he says not. His new house feels so full of light, and is almost energizing. Here, I feel ... ill, sick, weak, tired, and depressed. I loved being with him last week. Oh yes ... we finally admitted to being in love.

Scared - 18-07-2011

I should have updated a week ago really. I spent a week with G after he moved into his new house, and it was absolutely fantastic. I will write about that separately though. Right now, I'm feeling scared, and I need to get it off my chest.

In April of last year, I think, I started reacting to the cat. You know how you just have the instinct that tells you what you're reacting to? Well I knew it was the cat. I was constantly sneezing, a lot more so when the cat was around, it went to my chest and started feeling fluttery, so I started living on anti histamines; one type for night and one for day. Then I went to Egypt with Ian, and was a billion times worse when I got back ... the doctor said I'd picked up a bug on my trip and that's what caused the subsequent illness that lasted until last December. I was tested for cat allergy, and it came back negative; but people who are generally not allergic to most cats are allergic to Sienna ... so presumably she has a different kind of fur / dander. I asked to be tested for allergy to my specific cat, and just received funny looks from both my GP and the immunologist.

I started noticing last week that I was reacting to the cat again. She's molting again. When she started molting a few months ago I was relieved to find that I didn't react to her. I am now. She's obviously shedding a lot of fur; as she had her first massive hairball for the first time in years, the other day.

I took a nap this afternoon. I woke up with a really badly fluttery chest. I felt worse when I woke up than when I'd gone to sleep. Dead legs. Dead arms. Nauseous and queasy. Thick headed. My eyes hurt. In short ... I'm very scared that I'm getting ill like I was last year. And this time I'm on my own. I have no idea how I would survive if I went through, on my own, what I did last year :(

Draft reply to MP

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:

Dear MP,

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:

-    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.

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

Letter from my MP

Dear Olana Voljeti,

Thank you for your recent letter and I was sorry to learn that you are still suffering with M.E.

Unfortunately, I do not keep full paper files dating back to 2003. I only have a short record saying that we looked into benefit entitlements on your behalf. I assume, however, that you will have kept any correspondence relating to this.

Obviously, if you have not already done so, you should contact your GP to confirm your diagnosis of ME - he is the best person to help.

I would be happy to write to the appropriate Government Minister on your behalf, but you should bear in mind that he will not be able to comment or look into your specific case. If you would like to write to me with general points you wish to make on welfare reform, I will certainly pass these onto him.

I hope this helpful.

Yours sincerely,

Your local MP.

You know what, I have absolutely no idea where any of my paperwork is, coz Ian put it all somewhere when he chucked my desk out. So I really don't know where my letters from my MP, from 2003 would actually be. This obviously is not my MPs fault though.

I'm not quite sure why he thinks I need to contact my GP to confirm my diagnosis. My GP has been writing me regular sick notes with it written on it. Am I missing the point here?

As far as I'm concerned, that letter is still going in my pile of evidence as it is at the very least confirmation that I contacted him in reference to benefits in 2003. Thank you Mr MP :)