"Hi to everyone,Im a hiv women age 38, i was diagnosed in 1989...19 yrs ago..to cut a long story short, i am also being reviwed..im currently in reciept of high rate care dla and high rate mobilility dla, when i was 19, i got the benefit straight away via special rules..the last 8 weeks have been very stressfull to say the least..and i have been very depressed and worried that i wont be able to cope if they take my benefit off me...i also feel that i have been made to look like a benefit cheat..which i am certainly not..what i would give to be hiv negertive and have a job( i used to be a hairdresser) i would be getting more money working that's for sure...i have been on every hiv drug going...and there are not many ,more options available to me now..im on a trial drug at the moment...anyway i filled in the dla form..but they was'nt happy with that they also wanted to come out to see me for a medical examination..anyway she came out on wensday, she asked me a few questions about the care i need..i have lipodytrophy wasting, kidney problems, muscel weakness...and mental health probs..that goes with being a long term surviver..anyway all she seemed to be interested in is how i aqquired the virus, she didnt ask me any questions what im like outdoors..she also tried to put words in to my mouth by saying you can turn in bed without help..i pulled her up on it( and told her i felt that she was putting words into my mouth, and know i cant move properly by myself in bed as i have a buffelo hump on my back..she didnt look at the hump..i got the impression she didnt want to touch me..anyway i feel its a disgrase the way longterm survivers are being treated..i would like them to live just 1 week of my life and see how it bloody feels..they havent got a clue...they are just looking at blood results, my blood results are good but i feel like crap most the time due to the side effects of the meds... long term survivers really need to pull together and fight for our writes, sadly those who fought for our writes in the early eighties mostly gay men..are no longer with us..i feel like we are being trampelled all over and nobody as any compassion for hiv people...im sick of hereing..its no worse than being a diabetic( bullshit) this disease can still kill..THERE IS KNOW KNOWN CURE FOR THIS GOD FORSAKEN ILLNESS)if my meds stopped working, i have become resistant to most..i would proberly die in 6 months as there are not going to be any options for me...this as become a nightmare with the added threat i will loose my benefit..and would have to survive on income support alone...does anyone know how long it takes after the medical examination for them to make a disision?..im very stressed out worrying about it..i dont feel like they are not looking at the full picture of somone living with this virus and the damaging effects it as on the body and mind...and the stigma( what employee would hire somone if they knew they was hiv posititve) not many i can tell you.most people who are fortunate to work, are in the closet about there status. "
I would like to thank the person who posted this comment for taking the time to let us all know her story. It cannot have been easy and I salute your courage. I felt your entry deserved more prominence I hope you do not mind. Please feel free to email me - john@hivbenefits.co.uk
Subscribe to:
Post Comments (Atom)
11 comments:
You are a very brave woman & am saddened by your story, I wish you all the luck in the world. All of us in the same position will be thinking of you & if more people wrote their experiences on here I'm sure we would have a better postion to stand up to this unfairness.
All I can say is what I see written here is APPEAL APPEAL APPEAL & please if it is all getting to much for you seek aid from your local HIV services...PUSH for that help you deserve it!
Andy X
Completely agree!. If you consider appealing see the document GL24 from documents on the main website that show you how to.
John.
Thank you so much john, for provoiding this site for us all. I found you via yahoo search,good job i did, i so needed to air my frustrations.
Thankyou anonymous for your kind words,and yes i will be appealing, if they take the dla off me..it just a waiting mind game at the moment..like john i also recieved my xmas present in the post in december.
Thank you. If it wasn't for the contributions of others also it wouldn't be the success it is becoming.
John.
Hello,
I am 42 years old man and I am HIV+ 22 years now.
It was 1986 when the doctors said I had only 6 months to live. I’ve lost two boyfriends a number of dear friends; I’ve been thought cancer, TB and numerous other infections. I’ve lost all my upper teeth and wearing denture since I was 35.
I have HIV related arthritis with severe joint pains, side effects from the HIV treatment such as lost of appetite, diarrhoea or constipation it depends of the day, exhausted all the time memory loss and I am clinically depressed on medication and cognitive behaviour therapy to control anxiety attacks, panic attacks and fears. I also suffer from vertigo.
Its 2008 and I am still here…very long 6 months…..and, I am sorry for all the above but I didn’t want to cut the long story sort this time…
I’ve been awarded under special rules DLA in 1996 “for life” at the begging which became “for indefinite period” later and I had a medical examination in 1999.
I’ve received, like you guys, the DBD551 for the review, 1st of December (world aids day, what an irony) which I’ve returned and I know that my doctor sent medical report. Apparently DWP sent me a claim pack to fill in on 11/2/08 which probably has been lost in the post so now I am waiting for the claim pack.
I thought I was alone, the only one with the problem. Apparently not and I am not any happier but at least I am not alone……..thank you guys and good luck
Thank you for this. Please let us know how you get on. Good luck to you also.
Take Care,
John.
In response to the letter of the lady who had a medical...this left me stunned. I haven't heard of anyone having a medical after having filled their DBD551 and the the full claim form. This is scary. I wonder, was your own doctor's comments very contrasting from your application? I can't help thinking that our doctors opinions can make or brake us in a sense, and that given that so much is relying on their comments, there is a big burden on them. I have also heard that their own comments can be checked upon, and that make our doctors more powerless to help us. On the other hand, some of us that have been living with hiv and all the others bits and pieces have learned not to pester our hiv doctors with every ache and pain, sometimes serious stuff that we just know is not going away anyway. I feel that this resiliant attitude that most of us have developed over the years is now firing back to us. What a shame!
I think it would be very helpful for people to find out exactely what's happening to others so thank you for sharing your situation
Gaia
Thank you Gaia.
John.
Hi Anonymous Lady, Gaia and John,
I have been watching this forum since it began, as I too received the request from DWP in December and am still awaiting the outcome, although I know that they will be checking with my Doctor. My story is a mixture of all the usual, but Gaia has made a comment that I would like to reinforce. I NEVER tell my doctor what is going on with my day to day problems and coping mechanisms. I always want to be as far away from the hospital as I can. I get the drugs that I need from him and the rest of the problems are dealt with by myself and to a greater extent my partner. Mostly my approach has been a kind of denial, but dealing with the problems as they arise and trying to find solutions by ourselves. I remember getting the request from DWP in December and with anger writing AIDS across the form and sending it straight back. It was an effort not to include an apology for not having only survived for less than 6 months since having been awarded for "Life" in 1996. So I imagine that when my doctor replies to DWP I will have my benefit reduced or stopped completely as my condition appears to be "stable" with good blood counts. I really don't want to show them my ills, and realise that it is people like me who are the easy targets for them. But as you have acknowledged John, there are those of us who fought hard through the 80's and 90's (I was diagnosed in 1985), and now I have no external fight left in me.
Hi john and dla blogers,
im the the lady who posted above..well after a long 3 month agonising wait,with threat i may loose my benefit..THE BROWN EVELOPE arrived TODAY..the letter said they are satisfied i am recieveing the correct amount high rate care and high rate mobillity..phew!!! what a relieve!! The last 3 months have been awfull for me...it does not mension anything about taking me off the special rules, or a time limit, "im still in limbo" i fiqured it must still be for life( i will give them a call to find out)i would just like to say a big thankyou to john and is partner, for provioding us a place to air our frustrations, at this awfull review system..i would advice anyone who as there the benefit taken away..to take the dla to courts of human rights...it makes my blood boil at the bad way the vulrable with life threatening illnesses are being treated in this way(THERE IS NO CURE FOR HIV/AIDS they have got to realize longterm survivers, have very limited drug options..i have been on every hiv drug outthere..including the most recent t-20..the doc took me off it because i had know fat on my legs to inject due to wasting..im now on a few trial drugs..i just dont know how long they are going to last before i become resistant..but my point is..the longer we have the virus..the worse it gets and the fewer drug options avaailable due to resistance..they need to realize this and put a stop to this so called "making sure we are on the right benefit crap"!!...and not think everyone orky dory because of the "MEDS"
write then time for a cup of tea!! and a bit of a longawaited piece of mind!
i will still be coming back to see how others get on with the injustice of it all..its a disgrase!
hugs to all xxxxx
We are so pleased for you. Thanks for coming back and letting us know your outcome. This is so important so that we can get a picture of how this review is impacting on us all.
Your good news has made my day!
Thanks,
John.
Post a Comment