Are you thinking along these lines ?

Received the following today which I think is representative :

"Thanks for starting your blog, I think most people with HIV and who are on DLA are unaware of the changes that have been made and the first they will know about it is when they receive the DBD551. I agree with you that DLA should be in place before the need for it is critical, and if it is taken away will cause severe hardship and stress to people who are still in a very vulnerable position.

Do you know if everyone who is currently HIV and on DLA will be written to in the next 12 months or is it just a random few?

I have been positive since xx and on DLA for the past x years at the higher rate due to deteriorating health at the time, and am feeling very anxious about the changes that have been introduced. I've spoken to a few people in similar circumstance and they also knew nothing of the changes that have been made. Do you have any advice? Do you think the petion to Downing street will have any effect? I feel reluctant to sign it in case it puts me at the top of the cue to be re-assessed."

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.

5) All claims are being reviewed by age and by alphabet.

6) Claims of 2/3 years ago are likely to be under the new rules already. This applied to those typically older.

7)Many from "hearsay" that I have been party to are loosing their benefit entirely.

Check the web blog all the information for the DWP are there. Sorry there is a lot to read but even for me it is not clear as I have been unable to find and case studies on people with HIV that this has happened to.


Because I found it difficult to find all the information. I thought others would so the idea of a blog originally was to bring all this information together in one place. Also to hope others would come forward with there experience. However none have.

I am sorry I cannot be more helpful but if you have read the info contained in the links you know as much as I do.

I think part of the problem is people feel don't want to be open about their HIV and/or that they receive benefits. Which of course is their prerogative. However if they do nothing that can they really complain if they loose their DLA?

I cannot advise you on the Petition. I doubt it will affect the DWP review process either way. However you must make a judgement call for yourself.

I will post your email & my response. I will not publish who you are."

NOTE: I would really like to hear from you if you are going through this or have been affected by this. I am trying to offer a central repository of information that we can all use. Please feel free to email me if you have anything to add or correct anything I have placed on the blog thus far.

Thanks.