A shared experience - Thank you.

This came in the email recently. Sorry its a long post but is complete. I have edited it to maintain confidentiality. Thanks for taking the time to email & sharing your experience & views.

Initial email :

"Thank so much for the HIV & DLA review forum. A “close relative” has had his forms hidden away for three weeks to scared to open them. A friend tidying up for him found them recently & acted quickly within the time frame allowed, we now wait anxiously for the outcome. My “close relative” understandably has an ostrich approach to life. Doesn't see it wont happen.

AT least I know what to expect when its my turn on hearing the post hits MY floor everyday............

The whole thing has become a nightmare as I am having to do all the research myself for both my “close relative” & myself. The forum has been extremely informative & so glad I found it, BUT I am still extremely anxious, having sleepless nights worrying about the outcome. Being ** y/o & diagnosed 17 years ago, 'made redundant' two weeks later?? Very suspicious but hey it was a big American take over & I suspect related.
I'm apprehensive about the future. My “close relative” has been positive for 12 years. The whole situation has had an almighty effect on all our family.

If ever there was a call for an experiment on how HIV can differently affect siblings, we will be ideal guinea pigs. My brother has had every opportunistic infection going, for ever having adverse reactions to medications, KS, PCP, to name a few. I on the other hand suffer no more serious than the occasional pneumonia or viral meningitis. Living with HIV has been more a problem for me than the physicality of the disease. I'm now diazepam dependant because of it. Oh & how my GP hates giving me repeat prescriptions for it, deal with your issues is a common response. How & with who? I've not been told despite asking.

It appears that no one really knows what's going on & what's terrifying is that when diagnosed 6 months to live 17 years ago, I made financial decisions that I now regret as I'm not eligible for Insurance or policies that would have secured my home for my HIV negative partner in the event of death, whether HIV related or not. I'm not the only one I know who made the most of a very bad situation at the time of a shortened life expectancy.

I suspected back in 199* this would happen when medical advances started to improve the quality of the lives of so many I know & so prepared myself by retraining as many of my friends did BUT have had so far had no success on the employment side. I know that a five-day 9-5 job would be a major struggle physically but I WOULD HAVE to manage. Quality of life may be financially better for some, not so sure emotionally & mentally. How the hell do you explain, without arousing suspicion, what you've been doing for the last 17 years & at what point? Advice can be taken on the right approach but I foresee problems with any employer outside of the 'gay industry that would want to employee with baggage.

There are some many unanswered questions if & when someone's DLA is taken away. Does it take effect immediately? Does that mean we can no longer pay our mortgages? How would effect other benefits i.e. Incapacity benefit? I thought that the DS1500 & DLA would at least be a security to top up a salary for low paid positions offered that I now may have to apply for as my options & time are running out. So to the Motability car which would also have enable me to seek work further a field than just locally.

Sorry I could go on & on.........

I'm not sure why I've emailed you in truth except again to thank you for the reassurance that my “close relative” & I are not alone, but maybe my email might help in giving you yet another case for the attempt at having the DLA witch hunt stopped & not just for those of us that are HIV positive.

You may use some or all of this on the forum but PLEASE NOT my details. I'm paranoid enough as it is. A white van out side the house is enough to send me into a crisis. "

I responded :

"All the issues you raise are fairly typical. The reason for the blog was to help but more to encourage dialog with those that HAD already been accessed so more of the unanswered questions could be answered. The blog can be intimidating and my direct approach on most things might make the issues somewhat daunting. I have been working on a website to try and soften the approach.

Not all stories are bad. Though if I am honest most I hear of are of a loss of some or all DLA.

Funny, we both had the forms. My partner is being reassessed and we are currently working through the form as your email arrives. I have heard nothing so far.

Your “close relative” is very much the type of person that worries me and encourages me to keep going. He is fortunate to have you. It’s the ones who don’t will suffer more adversely. If not responded to. The benefit would have been withdrawn. He would have had to apply afresh anyway.

Yes I have a post-it to call Motability to find out what the situation is. Will try and do that this week and post something. One of the problems is the more I post the more negative it can sound. Those that feel happy to email me thank me for starting the blog but are the minority. The blog has had 370 hits and on a forum elsewhere about the same. I have had about a dozen email me. I believe in “fore warned is fore armed”. I am aware the blog could look very bleak. However there are no straight answers because like HIV, everyone’s situation is different.

But the awareness is growing which is good. People are talking more openly.

I will edit & post your comments. I fully understand your confidentiality.

On the GP front. The KVN forum held a meeting about the increasing role of the GP in HIV care. This apparently has affected the Health commissions thinking. Because so many people came forward with really bad experiences.

You don’t say which area of the country you are in. Does your clinic have a patient’s forum?

Good luck with your applications. Let me know how you both get on."

Followed by :

"Thank you for replying John,

After a relatively good nights sleep for a change, mind you a couple of sleeping pills helped, I do feel a bit more positive this morning.

I live in” London ”& I must admit the services here have been excellent with the original LEAN & the Globe centre, which have now merged as POSITIVE EAST.

My “close relative” lives in Brighton, he appears to have almost a permanent bed at the hospital. He has a very good CAB woman who has helped him in the past, its just getting him to do anything that is the problem.

Just a thought....... how about trying to get our Mr PADDICK somehow on board, after all I'm sure he is hoping for a large PINK VOTE for the mayoral elections."

My last response :

"Good to hear Positive East are helping you. I will add a link to there website. I notice this issue is prominent on their website. I have called Positive East and left a message.

I would email Mr. Paddick however there is no email address on his mayoral website. Yet plenty of ways to promote his campaign."

Note: The author of this site has to remain politically neutral. Any political view expressed or implied is the view of the original author of comment / email.