My response,

"Thanks for taking the time to email. You are the 1st and only to do so. Though on one site the post about the site had 170 hits.

I am not sure and dare I say THT might be able to give more accurate advice on this.

However, I understand that :

1) This applies to those awarded the "Higher Rate" under "Special Rules" who were initially awarded the benefit "for life".

2) The award for life has changed to " for an indefinite period".

3) Because most of these awards are not reviewed the government wants to at the very least re-assess every few years.

4) Whilst undertaking this review it is using the premise that HIV is no longer a terminal condition rather chronic. This is therefore a change which allows all these claims to be re-assessed now under the existing duty the recipient has to notify the DWP of any medical change.

Not unrelated to the DLA review. Many also claim Incapacity Benefit. This raised other issues. The emails I get are mentioning this subject also. Here is what I understand. Please feel free to email or comment if I have any issue wrong or with your experience.

Disability Living Allowance/Other Benefits

If you receive other benefits where the amount you recieve is dependant on the level of DLA you get. I can only assume that these benefits levels may be lost or reduced depending on the level of DLA you will get post your review. You have a legal duty to declare on forms sent to you to ensure your information is up to date. Check with your Solicitor/Welfare Advisor/Social Worker for clarity.

Incapacity Benefit

The Welfare Reform Act 2007 comes into force later this year. They are replacing Incapacity Benefit, Jobseekers Allowance & Income Support with the “Employment & Support Allowance”. As far as I can gather. I have just started reading the explanatory notes before tackling the act. Those applying will get a basic allowance. Following an assessment period (13 Weeks max.). You are then awarded either a work supplement which will require you to engage in activity towards finding a job. Or you will be awarded the support supplement. The support supplement will not place a duty on you to engage in the "seeking work conditions" of the work component. Though the support supplement will be reviewed yearly.

QX magazine covers the Gay Community.

Page 8 of this weeks magazine carried an article about this review.

Clicking the link will download the pdf of the magazine.

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.

"hi i am pleased to find a site that gives information on the dla review, i sent my dbd551 form back on 7th january, i have been waiting for news for a few weeks, so i rang the dla phone number and they told me that they were still waiting for a reply from my doctor at "my London" clinic, they said that they had been in touch with "my London clinic" and that because the clinic were inundated with these forms that it would take longer than usual to hear from them,it is so stressful waiting for a reply, i can only hope that when news comes it is good news, though somehow i feel that most people will have to reapply.i am so pleased that you have set up this forum where people can at least be kept informed, keeep up the good work,"

Edited to maintain confidentiality. This very much reflects the experience many clinics are facing unfortunately.

Look if your local council provides HIV services. You can find out from your local council website. Otherwise ask in your clinic if they can recommend an avenue of help for you.

HIV medics are having a hard time also with this review. They have a legal duty to provide accurate information. For them. Knowing you so well as their patient. They worry that what they might write. May have a negative effect on your current entitlement. However there report is interpreted by the DWP who are often not as specialised medically. Your medic is on your side.

Thanks to the originator of the emailed comment.

I welcome all feedback. It is only together that we will help each other.

Comment from contributor via email.

"Will this stand up as an argument against the DLA review?
Times online report:
HIV vaccine may never be found, warns leading Scientist.
http://www.timesonline.co.uk/tol/news/uk/health/article3370346.ece

Nothings really changed since the 1980s.
Medication = a reprieve, a prolonged death sentence.
DLA helps (medication short & long term Side effects aside) the quality of that still shortened life expectancy. Any one an idea of what the long term effect of pumping all these drugs into our system will be in the near future.
There's so many different combinations & ever new 'experimental' drugs that seem to do the trick now but who knows how & for how long?
Lab mice & monkeys?
Please all due respect to the research doctors, scientists & any one else in the HIV business for trying though. Don't stop please."

Thanks for your support.

As always edited to protect he author.

1st email.

"I know we are worried about that is happening to our human rights
with the changes in benefits.

Just a thought or it may be a coincidence, but are you aware of
people being told by the clinics they are having to change combo? My
reasons for thinking about this, is that I am being asked to changed
and friends of mine have also been told by the consultants they
should change. Is it that the consultants are being put under
pressure to get people on to more stable combos so they can not use
the excuse of side effects are stopping me from working and it is
less tablets to take and you can take then at home at night away from
prying eyes?

Questions, questions, questions!!!"

My reply:

"This is probably more due to cost than anything else. Putting people on more stable combo's reduces the overall cost load to the NHS because there is less need to provide ongoing support services. Usually accessed by patients who have combo side effect issues.

The cost of drugs to treat side effects, cost of a bed should someone need to be hospitalised because of side effects are what the NHS is trying to reduce.

The current benefit reviews have no impact on this from what medics have told me. Quite the opposite they are worried about their patients.

I would be worried about resistance and the longer term options for medication if I was being asked to change my medication. If my current combo is working I wouldn't want to change. Keeping all the drugs, resistance allowing, in reserve should I need them.

However, if you are taking AZT they tend to want you off this if you have been on it for 5 years or more.

Hope this helps & thanks for your email."

2nd Email:

"Well in Eastbourne and Hastings clinics, they did
a massive swap of people on to Kivexa me included
and I had no reason to change off of
combivir. The clinics here in East Sussex are

Given the nature of this I am sorry to drown the previous post so soon. Please make sure you read the post below this as it is good news.

If you need more info go to the Benefits & Work website.

I told the webmaster I wouldn't copy anything he authored. But this is important and I am sure he won't mind. You may also have received it if you are on the email list anyway. Go to the main B&W website for the detail.

Just recieved in the email :

The number of calls and emails we're receiving from claimants who are terrified about what's going to happen to them is reaching unmanageable proportions. Every new government statement on incapacity benefits seems to push more people into a state of panic.

We believe it's time to challenge what is almost a campaign of incitement to hatred of incapacity benefit claimants currently being waged by both labour and the conservatives. We're starting with an attempt to have David 'Benefits' Freud - the benefits millionaire maker - investigated by the parliamentary ombudsman. But we're barred from making a complaint, so we really do need your help.

In addition, a warning that the Benefits and Work website will be offline for a few days in about a fortnight as we install our new look.

Plus, news that the first lie detectors have been installed in Jobcentre Plus offices, Atos Healthcare have taken over their first GPs surgery, drug users aren't really going to be forced to have treatment or lose benefits and new guidance has been issued to GPs providing DLA evidence.

Oh, and there's another article about 'Benefits' Freud.

Next month we plan to look at which voluntary sector agencies are colluding in the war of terror being waged against claimants and what can be done about them.

Thank you for this. I fully understand & respect your need for confidentiality.

"TO WHOM IT MAY CONCERN: (PLEASE KEEP E MAIL ADDRESS CONFIDENTIAL)

DISABILITY LIVING ALLOWANCE REVIEW FOR CHRONICALLY SICK:

I am currently undergoing a review of my Disability Living Allowance. I was diagnosed with AIDS in 1991 with Karposis Sarcoma skin Cancer, and had Tubercolosis in 1994 for which I had one year of treatment. I have been taking anti-retroviral medication since 1991 and suffer many side effects as a result of taking 21 pills per day; my quality of life is poor, the side effects I have to suffer and try to manage are numerous and very unpleasant and I am unable to work as a result.

I just about manage financially on my current benefits; i'm able to keep my heating on during the winter to keep warm, buy the food I need to maintain good health etc however, this DLA review is having a negative effect on me due to the anxiety and worry of having my money reduced or even stopped, and a fear of going into poverty. My mental and physical health is suffering, as if I didn't have enough to cope with already.

I am very concerned about the 'Decision Makers' at the DWP; how much do they know about HIV/AIDS? Are they medically qualified and knowledgeable enough to make such important decisions about people with my condition? I doubt it very much.

I am thankfully one of the very lucky people who has survived an AIDS diagnosis in the early 90s and owing to the excellent care and support I receive at my Hospital and my own great determination to maintain body weight and manage illness and pain, I am still living, but now feel that the 'rug is being pulled from under my feet'.

Here is another shared experience. This was sent to in response to the request from Positive Nation for comments on this review a few weeks ago.

Thank you for allowing us to publish this here, also. So we can all share your experience & views.

Sam wrote,