As you know I deal with people via the email. Such is the Stigma with HIV and that you can post anonymously that still makes some people understandably reticent to post. I am happy to help where I can and time permitting on email.

The following is extracted from email over many months - I am very grateful the author allowed me to share this with you.  His persistence is a real inspiration to what we can do if we support each other.

Mid June 2008.

I received this email - 

"Hi, As a result of losing my entire DLA on 1st June, and the knock-on effect of losing my entire Income Support, I've followed as many leads as possible on the subject to get help. (Including on here).

(I'm HIV+, and was awarded it under special rules in early 90s.)

I managed to see my MP three days after learning of this decision on 7th June, and he raised the matter in the House of Commons yesterday (17th June), with Dawn Primarolo, Minister of state for Public Health.

I've attached the link direct to the subsequent discussions below. Hopefully.

http://www.theyworkforyou.com/debates/?id=2008-06-17a.790.2&s=speaker%3A10269#g791.1

My response - 

"I picked up on the top bit of the debate namely the figures but not the rest so I am grateful to you for sending it to me.

I will add it to the blog so thank you for this.

What reasons did they give you for removal of DLA? Are you going to challenge the decision?

I don't want to give false hope but we are striving to clarify some law that may relate to you.  I have retained your email address and will email you whether the interpretation is borne out by legal advice. (note this is still ongoing)

As you can imagine it is difficult to comment on a claim without seeing it.

Is there anything I can help you with? If so email me and I will try my best.

I am sorry to hear your bad news."

Followed by -

"The reasons they gave me for DLA removal included..... that I could walk 10 yards in 5 minutes, that my bone density has improved and is not bad enough for surgery, and my left knee does not restrict my walking at all. (Since then I've been walking with a permanent limp and am being fast-tracked for another scan by a new consultant as he thinks it is HIV related)

They also said that because I can attend to my own diarrhoea and incontinence problems myself means I don't need 'attention frequently throughout the day or significant part of the day.' And I don't need continual supervision during the day or night.

Basically they are saying because I'm not bed-bound I don't warrant it!!

At the moment I am a man on a mission with this - and will keep you up to date with my progress. I haven't contributed to your site as yet because I'm so damned busy being activistic and trying to sort myself out.

I did do the poll though. And I know where to come if I get stuck, so thanks! And yes please, anything relevant will be very welcome.

What you are doing here is brilliant - and I tell all those I know who might be impacted in the same way."

Mid July 2008.

I recieved this update -

"I've put in for a revision, along with numerous supporting letters from the consultant, G.P etc and the Citizen's Advice legal people have also written in detail to DWP supporting my request. It is just a case of waiting on that now.

Meanwhile in consequence of being no longer disabled!!! (Have DWP found a miracle cure for HIV?) and losing my entire income support; although I am now entitled to Council Tax benefit, the local authority want £770 from me that Income Support were going to pay upto next April.

And.......

....the DWP fraud department has now written to me saying I was overpaid income support between 2002 - 2007 because my circumstances changed. (They haven't from 1994 until now when DLA was removed), and want me to pay this money back. Just a mere £20294.44, they reckon!

It's going to take them a mighty long time to extract all that from the £62.50 Severe Disablement Allowance I'm now left with. It is so ludicrous it is laughable.

All this as a result of losing DLA.

CAB have come across situations like this before apparently.

As you can imagine it is not too beneficial to my stress levels, especially as my health isn't particularly brilliant at the moment.

Might this be interesting for your blog page? I'll be interested in what you think of it all."

I recommended a lawyer at this stage.

This week, end of Aug 2008.

"A letter arrived from DWP of Friday saying....

/

We have looked again at the facts and evidence we used to make our decision. As a result we have changed the decision. You are now entitled to Disability Living Allowance.

*Help with getting around......*

...You are entirtled to the higher rate because you are virtually unable to walk considering the distance, speed, manner and time you are able to walk without severe discomfort.

*Help with personal care....*

You are entitled to the highest rate because you need attention with bodily functions several times at short intervals right through the day. And you also need attention with bodily functions more than once a night or once for a prolonged period.

/

I've written the details here as it is interesting that they have revised their ridgid defintion of what constitutes being disabled, and also all of it has been backdated to the day it was removed.

I phoned them up and as far as the young guy who spoke to me could tell (he was the one who made the revision) everything would revert back to what it was before - re knock-on effects for Income Support etc. I shan't entirely relax until I have the debt bit sorted in writing as well though.

For anyone starting on this thing I'd recommend the first thing to do before filling out any form would be to see the CAB and get their legal people in on it. They seem to carry a lot of weight, and I suspect it was their support that freaked the DWP people out.

I know someone in the same boat who is just starting on the process, and because of what I learned contacted CAB who immediately got him a two month deadline extension for the big form, and he also had a 3 hour session with them advising him how to phrase things.

My CAB advisor had worked for DWP for a number of years and knows that it is all a bit indiscriminate and almost immoral the way they have affected people's lives. It is all to do with reaching targets, I guess - regardless of how they go about!

Hope this will encourage others to fight too.

I have heard rumours of whether it is possible too sue DWP for breach of contract if the original DWP entitelement document could be produced. Have you come across this?"

Of course this complete reversal is excellent news. On the last point, the legal advice so far is that Benefits law is very complex.  Unlikely that you would get any mileage out of suing the Secretary of State for breach of contract as many Statues, Statutory Instruments & case law would have covered this.