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Re: CLAIMING BENEFITS (£) IN ENGLAND FOR ENDOMETRIOSIS....THIS IS A DISABILITY
From: Nic (anonymous@obgyn.net)
Tue Feb 27 22:29:11 2007
Wow!, Marie, I'm so glad to have read your post. I'm currently in the
middle of this process as well...For me it's been two years waiting. I'm
now waiting to see the judge. The whole thing has been a long and drawn
out process. I originaly tried to take a medical leave from my job. I
was sick and in the hosp. and also just had a surgery. My boss ended
up firing me in the middle of my medical leave! (even though legaly he
is not supposed to be able to do that) I got a letter sent to my house
saying I was terminated from my position, which also meant my health
insurance was terminated (I wasn't even able to attend my post op
because of this!) This is how I first came to applying for
disability...In the US you can also apply for medical assistance on the
state level (disability is on the federal level), I was able to get
medical assistance and the state also determined that I was unable to
work at the time, so I also recieved food stamps and public assistance.
This is only a temporary measure though and unfortunatly, the wait for
"federal disability" in my state is more than 2 years ( I live in NY and
since 911 a lot of people have become very sick, esp rescue workers )
the system is overloaded right now and the gov't is not doing anything
to help speed the system along. The process is long and difficult, it's
often dehumanizing, and just plain downright depressiing, and Marie is
right about Endo not fitting into any of the standard "molds" by which
you are judged. She is also right in that you need a lawyer or advocate
who is familiar with the system working with you. You also need a
supportive environment with famiy or friends. Also some people ask the
question about working at the time they apply for disability and this is
a tricky question since usually the gov't will consider people who are
working at the time they apply, to be fully-abled, (even if it is out of
nessecity). But on the other side, if you are not working during this
application process you might just find yourself on eggshells the whole
time, not having any income or way of paying for your high-cost medical
needs. So it's really a tough situation. I would not have applied if I
thought there were even the slightest bit of possibility that I am able
to work. I have a master's degree and would work if I could, but I've
been so sick!...this whole process has been humiliating. Which is why
I'm so happy to hear of anyone with Endo winning a disability claim. I
agree with Maria, this disease can be disabling, thus it should be
recognized as a disability. Again everyone is different, I suggest you
thouroughly research the process in England, get people to support you
and prepare yourself for the process which, as I said can be long, drawn
out, and at times humiliating. You must have all your doctor's records
and doctors that are on your side and will support you, since they are
the ones who will be filling out all your forms. Even still, they will
send you, and subject you to physical and mental examinations with their
own doctors, (who most likely know very little about Endo and thus how
can they even proper evaluate you.) As Maria said there are a lot of
problems with the system and Unfortunatly in the years after 911 most
all public welfare programs, (at least here in NY) are saturated with
claims making the workers disgruntled, sick people waiting (and in some
cases dying!) and money tight.
If you want to write back to me, please do, or just post to this forum
(my email is: "anonymous@obgyn.net" I would like to hear from any others
with Endo who are in, or have completed the disability process. Where
did you apply, and what was your experience like. For me, my hope in
the system is quickly fading. I hope you fare better.
Nic
At Tue, 27 Feb 2007, Elisa wrote:
>
>Hi Marie~
>
>I know this can be VERY Frustrating especially when it comes to
>disabilty. I can only speak for me and from the States. It is a VERY
>long and hard process. Overall it takes at a minimum a year and that is
>just a standard process to weed out people through the system.
>
>I was awarded for Endometriosis back in the mid 90's. Then I was able
>to utilize their trial work program which is now called a ticket to work
>program which encourages disabled people who are young to try to have
>some type of existence in the world inspite of this debilitating
>disease. Unfortunatley, in my case when I used the program after 5
>years it came up for review which I had thought at the time I was doing
>OK so I chose to come off. I had and still have all my medical records
>as supporting documents and I know some people think the Dr.'s need to
>literally write that a person is disabled. The system looks at
>everything and sends forms to the Dr.'s as well to fill out and if we do
>our part and submit our evidence hopefully the two worlds come together.
>
>I have been waiting a year again in March. I just had my hearing before
>a Judge. It was great because I believe they truly came away
>understanding this disease. The judge couldn't believe the amount of
>surgeries I have had. To us it's nothing because we keep having them in
>hopes that the next one will make a difference and help. He was
>understanding and even said the vocational witness didn't need to
>question me because in the end doing sedentary work with this disease
>and the medicines is just plain hard to do (again we all are different)
>but I believe it can continue to be recongnized. We pay into it. If we
>have exhausted all medical options and invasive and non invasive methods
>are not working something isn't right and we must look into our options
>further. When we are bed ridden at times and can't even stand up more
>than 2 hours before lying down, medicines, pain mangement, ER visits and
>so much more there is clearly grounds for filing the application for
>review. I have found that getting a good attorney who works with the
>system (I am not sure how it works in England) but here they do it on a
>no recovery no fee system.)
>
>I am not condoning anyone abusing the system at all, but if someone is
>disabled it doesn't hurt to look into this process and see if you
>qualify. This is a disease without a cure. They do look at it like a
>benign form of cancer. The hysterectomies we have are a form of
>casturation. I have found that some give up on the system because of
>the amount of paperwork and time it takes here to file. I believe there
>are many women out there who qualify and don't even know they have this
>option. The best thing I can suggest for you and anyone is to make sure
>you get all copies of your medical records from as far back as possible.
>Keep them in a 3 ring binder. Get an attorney who can help you file
>this and lighten your emotional and physical load through this process.
>Have them look up the past cases in the area you are in for past awards
>for this disease. If you need to go before a Judge it's OK. Get
>articles ready and keep them in your binder that pertain to your case.
>We are so well informed especially through links like on this forum.
>Remember, we don't choose disability, it's chooses us. What we do with
>that opportunity is up to each of us. It's hard and emotionally
>draining as well as physically because you feel like no one is
>listening. I promise if you give it your all and get some good help
>behind you with someone who specializes in this field it can make a
>difference.
>
>I found that in this refiling for me that there isn't really a cookie
>cutter slot we fit into period. I hope in time to write the SSD
>Administration as they encourage us to write with our thoughts on how to
>make a difference on disability and it's processes. I want to let them
>know what to expect when receiving possible endo claims and maybe some
>areas of reconsideration they can possibly give others. As each of us
>are different with how medicines effect our bodies, the same is with our
>disability. It's hard for anyone to say to a person who has had minimal
>amount of surgeries that they don't qualify when they are not seeing the
>whole picture for that person. I have come fully loaded from the
>STAGEIVPLUS factor in my case and they just shift my paperwork out there
>not because I wasn't really disabled but because it didn't fit their
>guidelines. I welcomed the chance to go before the judge because it
>didn't make sense how this doesn't qualify with all the supporting
>documents saying so. It didn't make sense that I used their program and
>it's causing me problems again. I discovered it's just the process. It
>wasn't that I am not disabled.
>
>I hope this makes some sense. If a person gets rejected it's not
>personal it's the process. If more applications come through over time
>then they (the Adminstration) can get better familiar with this disease
>and the long term effects it has. I am happy to help anyway I can for
>you. It is a debilitating disease and it's clearly documented, the
>question each of us has to decide is it worth the fight. I understand
>all those who choose not too because it is VERY tiring but I just
>couldn't sit back and let this disease define us here at home.
>
>If I can help you or anyone please do not hesitate to write me at
>stageivplusisus@gmail.com. I can't remember the name of the first women
>who got it in California in the early 90's but I have to thank that
>person for the rest of my life for inspiring me to go forth and be the
>first for Illinois. Together we can make a difference!! :)
>
>I am here for you..
>
>--
>Elisa
>
>At Tue, 27 Feb 2007, marie wrote:
>>
>>ENDOMETRIOSIS IS A DISABILITY...........SO WHY ARE US WOMEN
>>SUFFERING.....WE PAY MONEY OUT FOR TREATEMENT AND WE ARE TOLD IT IS A
>>DISABILITY....WHY DO WE PAY FOR A DISABILITY ???????????.......DOES THIS
>>NOT MEAN WE SHOULD HAVE SOME KIND OF FINACIAL HELP.....I HAVE HAD TO CUT
>>MY HOURS DOWN AT WORK AND EVEN TIME OFF WORK ILL....THIS IS NOT WHAT I
>>WANT TO HAPPEN.....IM 22...IVE BEEN DIAGNOSED SINCE DECEMBER 2000 AND
>>IVE HAD 5 LAPAROSCOPIES AND AM NOW IN MY 5TH MONTH OF LUPRON.......(
>>WORST TIME OF MY LIFE ).........ALL I WANT TO KNOW IS IF THERE IS
>>ANYTHING I CAN CLAIM FOR THIS DISABILITY IN ENGLAND CAN SOMONE PLEASE
>>HELP ME........CONTACT ME @
>>
>>--
>>MARIE1PHILIP@AOL.COM
>>
>> ...........ANY HELP AT ALL WILL BE VERY MUCH APPRECIATED.....XXXXXXXX
>>
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