I have been diagnosed with HIV in 1992 and was very unwell was given the DLA on special rules. Due the course of the next few years even though i had period of wellness and unwellness I started to think that maybe it will take some time for HIV to kill me. I did not want to stay home and wait for death to come knocking on my door and tell me this is your time and having spent all this time waiting doing nothing. So i decided to start study and i did for 4 years to the point that i then found a job. I informed all the relevant benefit I was receiving income support/ housing benefit. I did not inform DLA and I was advised that it was not means tested. To cut the long story short I started to become so paranoid that I would be prosecuted from the DWP. I saw programs on telly about people claiming DLA but walking. The review came about for people receiving DLA under the special rules. So I decided to actually report a change of circumstances before they decided for me. In the interim period I suffered a very serious period of 2 years of panic attacks/ strong anxiety/ and depression. When I reported the change they sent me the form and they award me high care low mobility. They took me off of the special rule and they awarded me the benefit for three years. My DLA form was this time based on both my Anxiety and my HIV and how it affects me. Again I started to think about DWP prosecuting people which is often seen on telly on the news as benefit cheat. I now called them again to report an improvment in my mobility. Now I do suffer from neurophaty and still get very anxious when outside. But do not need anyone to guide me. I work every day despite not feeling well for long periods. So where do I need advice. Well Ii do not know all I know is that my anxiety and fear are pushing me to report any changes to them for fear of being prosecuted. They say to report immediately any changes of circumstances. At the same time I do not want to lose a benefit that i am entitled to. Is difficult to assess my entitlement as to what they think is my right ammount. Also my partner keeps saying dont tell them anything you may open a can of worms ( meaning you alert them to keep an eye on you ) which increases my anxiety......
What is the right thing to do??
Please advice welcome
PDF version i really feel for you, have you thought about informing your hiv specialist of the anxiety and stress that this is causing you , i know that depression can cause feelings like these, so maybe telling your specialist would help you in future, if it is depression they may be able to contact the dwp and update your records to include what may well be a very relevant change in your circumstances i know depression can cause a downward spiral that makes the stress cause more stress, i hope that you find the peace of mind that you so rightly deserve, my thoughts are with you
I'm in the same situation, terrified of being prosecuted for getting DLA. In fact I wrote to them today telling them to stop my benefit. Mine was awared after diagnosis with a number of AIDS defining illnesses. I had been waiting to be reviewed as part of the special rules exercise, but have heard nothing. I had a panic attack on Saturday worrying that I was going to be investigated and prosecuted. There have been good periods, but also some very bad ones. I think now is the time to voluntarily surrender my DLA...it's no longer worth the worry.
I read what you have said and am very concerned that you have decided to give up your Disability Living Allowance. Concerned at how you will meet the additional costs of living with an illness like HIV, the diet & heating requirements for example.
It has to be said that the benefit is paid subject to you and your medic's supplying details of how you cope in terms of your Care & Mobility needs as well as relevant supporting medical evidence.
The worry and the "panic" attack you detail highlights that there may be other issues of a mental health nature you suffer from due or related to your HIV & any medication that you take. Please don't be offended by this it is merely an observation from your comment.
In fairness since starting this site at the beginning of the year I have heard of only one case where the DWP have tried to claw back money paid and that was for Incapacity Benefit.
The checks and balances for Disability Living Allowance are more thorough than for any other benefit. Certainly we work to ensure that the understanding of living with HIV is better understood.
It is also important to put this in context. The level of fraud in DLA is extremely low. The Benefit Integrity Project established this and was shelved by the government as it was costing over £100 million to find only £20 million of fraud. Most of the so called "fraud" is in the context of Incapacity Benefit Claims.
Unfortunately the view that all those on benefit are "cheats" is a label that government has deliberately allowed to be applied to us all for its own purposes of which your comment demonstrates perfectly.
To those of you that are worried please, before you decide to take drastic action, seek the help of an appropriate agency - your local council/PCT may fund a local HIV support service.
Remember if you are subject to a review, you fill in the form, the medical evidence is sought and then a decision made on your future benefit entitlement. Even there, where people have challenged this decision at oral appeal, they have had some success.
Thank you so much for posting this - I thought I was pretty much alone with these fears.
Mine is a similar story - I was diagnosed in 1990 and in 1995 a social worker advised me to claim DLA. It was just what everybody seemed to do back then as we all genuinely thought we would be dead within a few years. I was awarded high rate mobility & care for life. With this sorted out I started to do a bit of voluntary work which eventually led into full time paid employment in 1998. When I got the job I infomed the DWP as I had to cancel my Incapacity Benefit & Housing Benefit and have continued to work and receive DLA ever since.
I still have some dreadful days where I feel like crap but to be honest, having to go to work gives me structure and forces me to carry on. I too have neuropathy which causes me some problems along with the constant fatigue, nausea and bowel problems that are just a part of life for me now.
I get more and more frightened these days when I see programmes on telly about benefit cheats and how they are filmed, shamed and taken to court. I earn a decent wage and often think about just cancelling the DLA claim but the money really does make a difference for me. Sometimes I think its right to claim, it was with a social workers help, I told them I was getting a job and I have days where I feel like absolute crap but then the paranoia creeps in....what if they film me walking down the road or going out at night - Most of the time I just look 'normal'. Its a horrible feeling thinking that people might call me a criminal and a cheat - but maybe thats what all the publicity is about, maybe after nearly 20 years of being HIV+ Im just too sensitive and have go so used to living with this thing that its just so normal for me now. Arrrrghhh!
This was an important issue to highlight as I know many fear and have little trust in the State. It was one of those subjects that I was mindful worried people but I felt it was important to gauge how people were feeling about this topic. Thank you for those who have commented.
Please see this in a proper context.
IF YOU ARE WORRIED PLEASE SPEAK TO SOMEONE ABOUT IT. CALL THT Direct 0845 12 21 2000 or SPEAK TO YOUR HIV DOCTOR. ASK AT YOUR LOCAL CLINIC IF THEY HAVE SOMEONE WHO CAN TALK TO YOU ABOUT THIS OR IF THEY CAN RECOMMEND A SUPPORT SERVICE WHO CAN HELP.
I understand your anxiety, my partner was exactly the same and still has periods of worry. Try to switch off from this and worry about it if and when it happens. If you are worried about what you have seen in the media these people are blatantly flouting any criteria needed to recieve these benefits. Also these people have been tipped off to the DWP. You should always keep your business to yourself.
You have to take into consideration the DWP do not know when your circumstances change. They will have a very difficult job pinning it down to a specific date which is what they would have to do in order to calculate any overpayment. This they would have to do prior to considering any prosecution. It is pointless for them to prosecute for a small overpayment.
The only way they can be certain is if you tell them or they are watching you, bearing in my the number of people claiming benefit this is unlikely unless you have been reported by somebody. It sounds as if you have been very honest with them so should not worry.
I too felt very guilty about claiming benefit so gave up my Income Support and SDA in 2002. Now all I get is DLA and Incapacity Benefit which means I have to pay Council Tax, Prescriptions etc, now I have to be very careful with money.