Published by NAM in the "hiv treatment update" issue 181 November 2008.

An article by Michael Ratsey on his experience with the review of Disability Living Allowance. Click here for the article. This is a 19.5mb pdf file.

I had to scan this in as I couldn't find a link it at the time on NAM's website.

If you don't receive NAM's "hiv treatment update" please click here.

We are certainly grateful to Michael and NAM for keeping the issue alive in the HIV print media. Moving forward it is "key" we continue to keep our issues alive with the state, especially given the changes currently underway with benefits.

John.

Article reproduced with permission.

 This site relies on the contribution of others, the enquires they make on behalf of us all to further our understanding of how the state deals with HIV.  On behalf of us all, you know who you are - THANK YOU for your efforts.

One of these "silent" contributors has been very active in fighting our corner and made various requests under the Freedom of Information Act.

In the "Useful Documents, Freedom of Information section" you will find a response on how our data is handled? - click here to read.

As you will see some "key" questions have not been answered and this is an ongoing enquiry.

 Moved from comment left on polls.

"The following is a snippet from my experience with the DLA Tribunal Service.



About me : 

Late 30's gay guy. Diagnosed HIV+ 1991. Awarded DLA with DS1500 1995 which included Highest Rates of Care and Mobility Component. Received Review Nov 2007.

Filled in forms and sent them back. Decision: Lower rate of both. Appealed, went to oral Tribunal with a member of Welfare Rights.

"Before entering the tribunal I was offered a deal"?! - Don't enter Tribunal Room and walk away with lower rate of both DLA or enter and risk mobility component been taken. - 

Deal or No Deal- WTF - I thought this process was down to personal medical conditions and needs and not open to bartering?

Well I was grilled for 1 hour - Asked to leave whilst decision was made (which is normally ready in 10 mins): the 3 Tribunal Panel then left the building for dinner and I was told that I would receive decision when they return. So, I my WRO whisked me away and an hour later I received a phone call letting me know they had taken all DLA away. - As far as I'm concerned the decision had already been made. Oh by the way a representative from DLA was also present. My WRO said it was a first for them.

Well that's my snippet for now - I will add more on this in the main forum.



This has left me a nervous wreck."

Further to this letter - click here to read.

I have spoken to the person to whom it was sent. The appointment was for 2.35AM in the morning. Though not clear on the copy I was given, the journey plan is clear.  I asked the recipient if I could post this and was given consent.  I have amended the document to remove identifying information to maintain as best as possible confidentiality.

On seeking advice. The Citizen Advice Bureau called to query a) the time of the appointment b) why the person had been sent this as they were exempt from the process of Incapacity Benefit review as they were in receipt of Higher Rate Care of Disability Living Allowance (DLA).

Medical Services apologised that the time was an "error" and for sending the letter given the exemption.

You should note that if are in receipt of Higher Rate Care DLA you may fall within the scope of the legal exemption - click here for details.  If you cannot get out to make an appointment like this, insist Medical Services see you at home.

However BEFORE you do anything or panic get advice from your local HIV Service Provider, Social Services Department or the Citizen's Advice Bureau.

 From email and an encouragement to us all.

"On 30 June I wrote a formal letter to the DLA asking them to look at their original decision to stop my DLA. I decided to take your advice and throw everything at them (what had I got to lose?), so my letter ended up being four pages of detailed argument. I looked at each of the reasons they gave, and tore them apart. I didn't play the victim and give them another list of ailments, I just read the details thoroughly. I berated them for not contacting my GP, for being inconsistent, for being insensitive, and for moving the goalposts where DLA entitlement is concerned. I also led them to believe that I had help with the letter from the local CAB (I hadn't). In fact I didn't use any outside agency, just the power of argument.

As I told you previously, I was not optimistic about the outcome, but didn't want to give up without a fight.

Ten days later, on 9th July, I received a letter telling me "You are now entitled to Disability Living Allowance".

I couldn't believe it. They've moved me to the lower rate for mobility, but left me on the higher rate for personal care, so I'm getting a reduced amount, but it is still substantial. I don't know how long I will have it for - and they will probably try it again next year -  but for the moment I've got it back.

What surprised me was how easily they backed down, and the promptness of their decision. My impression is that they suspected that I was serious about my appeal, and that they didn't want the whole thing to go to a tribunal.

Anyway, I've got my DLA back and I'm happy."

 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

Maybe you know already, but just in case you don't it may be useful to add it to your updates."

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.

I was very ill when I tested HIV+ was diasgosed with PCP in March 1999. CD4 Tcell count 19, Viral load 768,000. I claimed Special Rules DLA and was awarded HRC and HRM 'for life'.

I received DBD551 form in mid-April 2008.  asked for, and got, an extension to end of May to provide my upto date information to DWP. I did not use form DBB551. Instead, on 22 May 2008 I sent a 10 page A4 letter in place of form DBD551 (under the Core precedent anbody is permitted to reply in this way if they wish) listing all my current care and mobility needs in detail. listing all doctors, medications and giving consent to contact my doctors.

DLA wrote back saying they had written to my HIV consultant and my GP. This letter arrived when I was in hospital with chest and heart problems. I was also diagnosed with angina on top of  active KS on my lower limbs and a recently failed drug combination. My CD4 count, which had been up to 400 to 500 was down to 200 and viral load was up to 34,000.

My carer argued with DLA that in order to get a clear picture of my health situation they would need to seek reports from all doctors involved in my care: HIV consultant, GP, consultant endocrinologist and consultant psychologist. After some resistance DLA agreed to write to all my doctors.

I have excellent relationships with all my doctors. I warned them all what to expect. They all agreed to go through the forms with me and give me copies of the completed forms.

My GP sent in his completed form on 16 June 2008. My psychologist sent in her report on 20 June 2008.