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#7154 - 03/01/07 04:05 PM Just ranting
melly.n Offline
Member

Registered: 10/28/06
Posts: 11
Loc: Oxford UK
i just need to get a few things of my chest. i'm off work at the momment as my skin has got so bad plus years of going with no sleep because of my skin yet still getting up and doing a full days work has taken its toll on me mentaly. so i'm on benifits. The other week the benifit people asked me to go and see one of thier doctors so they can assess me. Then yesterday i got a letter saying that they think i am fit for work so won't be paying me my benifit anymore. The main problem is when i had my appoinment it was in the morning so my skin was not sore and i could walk fine (i have EKV which means any change in temp affects it, but a few hours later)i had asked for a later appoinmemt so thay can see what it gets like but i was told that was the only one they had. i did explain to the doctor, but she just looked at me like i was making it up. i even had the crutches the hospital have given me but that didn't seem to make a difference. plus when they looked at my claim they didn't use my doctors report even though they had it. they didn't talk to my derm doctor, even though there doctor had never heard of EKV. The fact that when i took my clothes off to show her my skin she looked at me like i was disgusting i had let go (even though she is a doctor and i'm sure she has seen worse things than i bit of extra skin) but the fact that she has told them i have no problems at all has really got to me. now i have to fight to get my money back. when i asked them what i should do in the mean time, they said i should go back to work, when i said but my doctor has signed me off, they said i don't have to take notice of my doctor. now is it just me or is taking no notice of my doctor one of the worst thing you have heard. on top of all this she said that i had no mental health problems, then i would like to know why i'm on anti depressants and sleeping tablets, have panic attacks and have just been refferred to the local mental heath hospital.

so now on top of trying to sort out my skin get my mental heath better, i have to fight them for any money. how the hell am i meant to get any better when now i'm worried about how i'm going to pay for anything.

i have worked full time from the age of 17, i have never been out of work before now, yet i feel like i'm treated as if i'm lying and just don't want to work. i do i would much rather be at work than at home but its just not possible at the moment.

sorry i just needed to get that all off my chest. thanks x

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#7155 - 03/01/07 05:44 PM Re: Just ranting
Ellamay Offline
Member

Registered: 10/23/06
Posts: 34
Loc: Bagshot, Surrey, England, Uk
Hi

Sorry to hear you are being treated so bad. One thing I think you should look into is if you doctor signs you off work as you are not medically fit you are not actually allowed to work for that period once you have handed the sick certificate to your employer ( your employer may be the benefits agency/unemployment people) even if you want to. If you have a doctors certificate saying you are mentally or physically unwell the benefits office cannot ignore this. I would advise you to go back to your doctor and get thier advice. Hope you get somewhere with this there are so many out there claiming all sorts of benefits and getting them no questions asked when they don't need them at all.

Good luck

Liz

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#7156 - 03/01/07 09:22 PM Re: Just ranting
Curtise Offline
Member

Registered: 05/16/06
Posts: 115
Loc: Sheffield, UK
I agree with Liz that if you are signed off sick, you can't ignore that and return to work unless you are fit to do so.

I'm so sorry you had a dreadful time and an insensitive doctor at your medical. I'm shocked that she would ignore, or not even bother to read, information given by specialists about your condition. However difficult it is, and with mental health issues to deal with, I appreciate that being assertive is really hard, I do think you have to appeal against the decision, and get as much support as possible to do so. A strongly worded letter from your dermatologist might help. Sometimes the CAB can be helpful in supporting people with benefits appeals.

When we applied for DLA for our daughter Nina who has EHK, the claim was turned down initially; they said she did not require significantly more care than any other baby. How wrong could they be?! We got it on appeal though, so don't give up. Good luck!

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#7157 - 03/06/07 02:02 PM Re: Just ranting
melly.n Offline
Member

Registered: 10/28/06
Posts: 11
Loc: Oxford UK
Thanks for your advice, i am appealing it right now so fingers crossed x

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#7158 - 04/13/07 04:58 PM Re: Just ranting
katethegreat Offline
Member

Registered: 11/04/06
Posts: 9
Loc: UK, Nottingham
Hey Melly...

Email on the way

Hope your keeping well x x x

[This message has been edited by katethegreat (edited April 17, 2007).]

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#7159 - 04/14/07 09:46 PM Re: Just ranting
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
Melly, your best defense in filing your claim is to take pictures of when your skin is good and when it is not. Make sure you are taking photos of joint areas (elbows, wrists, armpits, back of knees) as well as the palms of your hands and soles of your feet. Explain in writing what it feels like in terms of ability to move when your skin is bad as well as degree of pain. Let them know that the condition of your skin can be dependant on many factors such as overall health, weather, stress levels, contact with cleaning agents, etc. or anything else that affects your skin's health.

Remember, these people know NOTHING of what it's like to live with ichthyosis. They see your skin looking "good" or "bad" but to them it doesn't translate into how difficult it is for you to perform tasks such as getting dressed, cooking or cleaning, let alone getting yourself to work and performing a job. Compare right and left what it should be like for you to do things if you didn't have ichthyosis to what it is like because you do have icthyosis.

Those pictures are extremely important because the person reviewing your case file reads hundreds upon thousands of cases each year so they hear from a lot people who are in pain. You need to illustrate in as clear a manner as possible WHY you should not be working, not just that it hurts.

You and I and just about everyone on this board and anyone with a chronic illness knows that if you are in chronic pain, of course your mental health suffers. Things can feel overwhelming and it's really hard to cope. Tie that in... illustrate how on a day where your skin is bad how that affects you mentally. Does it make it harder for you to do normal everyday tasks such as vacuuming or doing dishes because you know it will hurt to be on your feet and using your hands? Again, these people have no idea of what it's like. They can imagine what it's like to have a broken limb but a skin disease is typically beyond their realm of experience.

Good luck.
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

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#7160 - 04/21/07 01:43 PM Re: Just ranting
melly.n Offline
Member

Registered: 10/28/06
Posts: 11
Loc: Oxford UK
Just wanted to say thanks to you all, i have taken everything you said on board. still waiting to hear but have a big file with letters and info from just about everyone that could help, will hand that all in and hopefully that will do the trick.
will let you know how it all turns out x

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