Queen of Sleep

Living with narcolepsy: a personal journey

Aftermath of the Atos Medical Examination

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I have finally recovered after my visit to Atos Medical Services. I got so stressed out and anxious I had to rest for 2 days afterwards. I was lucky to have access to a friends mother who is an assessor in an other part of the country working in exactly the same capacity as my interviewer.

I called her 2 days before the examination for some advice on what to expect and some general advice. After listening to my story of how my previous interview had unfolded. See previous posts. Basically, I scored 0/15 points and had to appeal. My appeal was accepted and reviewed based on the review I was taken to a first tier tribunal. I was so stressed out I only contacted a local lawyer a few days before. I could not deal with it. She faxed over a request to reschedule the case so she could represent me. On the day of the tribunal they contacted her to let her know that my case was ruled in my favour.

According to my friend’s mother. It should never have gone that far and she said that I should have put in a complaint after the initial interview. She also said that because it is a variable condition it does not fit into the standard forms that you are asked to complete (you can always add information)(it does not say so on the form, I think). But more importantly she said that the assessor should have listened to me and looked through my paperwork – bring photocopy of diagnosis and supporting letter from specialist to give to assessor that they can keep.

This time the saga repeated itself and without my primary carer I would have ended up in the said situation. She basically told him to shut up because he was NOT listening and was blabbering on about missing limbs and said that I might have a chronic condition – the assessor got so offended that he was not going to continue with the interview.

Luckily, we got another assessor who DID take the time to listen and asked appropriate questions. She obviously had to do the routine check like vision, mobility of limbs etc which seemed strange but I guess she had to go though it with me.

If anything like this ever happens to you, i.e.being ignored and not taken seriously the receptionist have complaint forms.

Now, to some general advice:

Bring your carer, do not think you can cope with this type of examination on your own unless you feel comfortable enough to be able to really stand up for yourself, remember vital details regarding your conditions, and feel confident talking about all aspects of your difficulties. It will help you get 1 point if you bring a carer or friend.

In my case highlight that you suffer from 3 conditions: Narcolepsy, Cataplexy and associative Depression.

List all symptoms plus when and how it happens, how often and where. Explain if it puts you in danger/ gotten hurt as a result etc.

List medications that you currently take bring proof for example renewal medication forms from GP or print-out our your personal records from GP (photocopy and leave with Dr.).

I was advised to say based on my case that I suffer from a variable condition that causes me significant disability for at least 4 days a week. The other 3 are not so bad. Uncontrolled by medication. Do not use words like Good or occasionally, you need to translate your symptoms into real facts, for example: cataplexy happens on a daily basis ranging from mild attacks to full-blown loss of muscle tension. Make it real! I find this hard because I cope with Narcolepsy by having the memory of a goldfish;) If unsure, write it down on a daily basis and list symptoms for example cataplexy: at home: no of times a day and severity 1-3, in public: no of times and severity.

Now, I have to wait 2-3 weeks to find out if I have to appeal again. In the defense of these medical examiners/Doctors or whatever you like to call them, most of them have probably never met someone with narcolepsy nevertheless treated a patient with narcolepsy. My contact have only had 2 patients in 30 years.

Written by Queen of Sleep

August 2, 2010 at 7:12 pm

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