KVN Forum meeting this evening.

The KVN Forum is the patient group giving a voice to HIV patients from the Chelsea & Westminster Kobler, Victoria clinics & Nkosi Johnson Unit.

It is the patient forum which represents me as a patient within it's patient base.

At the meeting held this evening as the "DLA Review" was on the agenda I attended for the first time mainly to contribute to this subject. I am grateful to the forum for allowing this discussion. Also it allowed members to put a face to this blog.

Further more, such was the feeling, that the KVN forum. Hopefully will make this a main agenda issue/topic for another meeting. Thanks.

If you are a patient at any of the aforementioned clinics you can join the forum from their website. Even if you cannot attend the meetings you can still contribute to your care via this forum.

A question was raised by a fellow forum member about when the change was made to the award from " For Life" to "an indefinite period". There was also confusion over whether this was a pilot still or an ongoing process.

Under the post "Various acts of Parliament" the Welfare Reform & Pensions Act 1999 (C.30) Clause 67. Sets out the change from "for life" to "an indefinite period."

For details on the review see the special rules report from the Disablilty Living Allowance Advisory Board. . Note this will download a "pdf" postscript file. Provides the background to the review.

Of course I could not post following the previous entry from my co-author with out mentioning the excellent result that gives some hope to the rest of us.

Result ?

I just heard from a fellow patient at Wharfside to say that DWP have reviewed his DLA and left it intact.

He was incredibly worried about this and was one (of many?) who've been receiving extra psychological support and medication since he got the review letter a while back.

But at least this indicates that if you still qualify it looks as though the DWP are not being as harsh as they were during the Benefit Integrity Project ... or at least the adjuicator in this case was.

Income Capacity Benefit, News From BBC.

Story published today on the BBC news website concerning the report from Davud Freud an investment banker & advisor to the DWP.

Story can be found by clicking here.

New contributor....

There are now two of us contributing to this blog.

I am grateful, for the extra and more experienced view this brings. As well as the support given.

Thank you.

URL & Email changes ....

The initial url (web address) for this blog I accept can be difficult to remember. Also the email was proving problematic.

So though http://hivdlareview.blogspot.com will always access this site.

You can now also use http://www.hivbenefits.co.uk . Easier to remember and pass on I think. There are good links on this site to get other benefit advice.

Email is now john@hivbenefits.co.uk

Keep copies of everything

It's been years since I dealt with a DLA application or review, I used to do them occasionally and I know that more recently the advice would probably have been "don't bother" unless someone was in pretty poor health because the likelihood of any kind of award in most cases was pretty slim.

But I was reading up the very useful guide available to people subscribing to Benefits and Work and discover that the DWP routinely shred application forms, letters, records of phone calls, sometimes within months.

I've just rooted around and found my original 1995 DLA application, at least I have a copy of it even if DWP don't. And strangely a lot of the things on the form that applied then, still apply today.

The important thing is that you should keep copies of everything - some people have been paid thousands in backdated benefit as a result of keeping it all.

Motability.

Some may have a car provided by the Motability Scheme as they receive the High Rate of the Mobility Component of DLA.

I have searched the website and have found no information on the process or what happens if this review impacts the rate you receive should it fall.

If you have any concerns call Motability and ask their advice. I have added "getting this information" to my to list and write it up when I have it.

For many the use of car allows them to attend medical appointments, get out of the house, encourage independence & live as normal a life as possible.

Thanks to i-base

Thanks are due to i-base. They have allowed me to post about this blog to the UK-CAB forum.

Click here for more information about the UK-CAB (United Kingdom Community Advisory Board).

Site counter added.

I have added a site counter as I was asked how many hits this page has had. So from today 20th Jan 2008. Though a little late. We will track it.

On another site where I have posted this information about this blog have had 241 hits to date. Thank you.

I have choosen the counter from a site which is driven by user privacy & unlike many website you navigate to (and you may be unaware). They not pass on any information they may collect to 3rd parties. So you can surf to this site safely.

Given the sensitive nature and the issues of confidentiality surrounding HIV & Benefits people have. This counter will allow us to see the level of interest in our community. As not everyone would feel safe making a comment or sending an email. Which I totally understand.

Interesting DLA appeal ...

thanks to Wharfside Patients Forum for this ..

Appeal reference CDLA/14594/1996.

It can also be found on the Disability Alliance attendance allowance and disability living allowance case law digest and associated links on the panel on the right hand side.

Help availible from THT......

My partner called THT Direct to find out what help was available with his form, see previous post.

He asked what help was available to facilitate filling in the form. The response was, and I quote

"Unfortunately, THT doesn't really assist in terms of what could be helpful to put in the form or even helping people to go along with the form"

The operator then looked to see if there was other services that might have been able to help in our area. After conferring with a colleague and looking at the information on their system. He suggested, the Riverhouse Trust. This is local HIV support organisation.

He suggested that as they have the CAB attend on Wednesdays, by appointment only, that the CAB might be able to help.

He also suggested we approach our Social Worker. That they may be able to help.

He gave the phone number for Riverhouse Trust.

Then asked my partner if he could answer one last question before the call ended.

He asked my partner "What is your year of birth? we need it for our FUNDING"

You must of course draw you own conclusions from this. By all means approach THT for advice. After all Lisa Power of THT is listed as a member of the Disability & Carers Service Advisory Forum. THT therefore are fully briefed on this review.

At the very least your call will help with ensuring they get the funds to support you from central government as a person living with HIV.

The call was recorded and because of Data Protection Law I cannot make it available for you to listen to. However I will make if available to THT if they request it.

Catch up, Backgound work etc.

This week I emailed out again to a cross section of who I thought were interested parties across media, medial & support groups.

I have had some positive response most namely from The Wharfside Patients Forum.

I know others, & thank you on behalf of all of us, are doing what they can in the back ground to push this issue forward and come up with at the least support for people who may feel hardship and for whom this will have a subsequent drastic impact on their health.

So to summarise thus far. Clinicans are doing there best to support there patients but know little of the benefit itself. Decision Makers at the DWP are using a formula heavily biased towards mobility when making a decision. Slowly the community is starting to openly discuss this issue.

So make sure you see all of your clinicans regularly. If you see a pain consultant or a clinician for any other complaint make sure you see them regularly.

Don't be disheartened with your clinican if you suffer adversely as a result of this process. They will always do there best for you.The Decision Makers are not medical and it is they who interpret the medical reports.

If you have had an adverse decision. As a 1st step request a re-review of your application. If the re-review agrees the original decision. Then ask for an appeal. See Guidance -READ THIS on the main web site. Chances are the DWP have not sought medical reports from ALL your clinicians. Get advice see the links on this page.

Please don't be disheartened or worried. Everyone's situation is different and if someone you know has had a bad decision or lost their benefit. Their health situation will be different from yours. Your outcome may be different.

Good luck.

John.

A shared experience - Thank you.

Though this was posted as a comment on the previous post. I didn't want it to be hidden so have copied it here for easy of access. Thank you to the sender.

"Hi there,

very interested to find your blog as I have just spent the whole day surfing for info re the same situation for my partner.
He has been positive for 22 years, was awarded DLA for life when he was severely ill in '97 with AIDS. He was lucky at the time, he was one of the first group of patients put on a combination therapy trial and survived.
He subsequently suffered from Non-Hodgkin's Lymphoma where there is a 40/60 chance of survival and survived, after 6 months of chemo.
He also suffered from KS.

He is now treatment exhausted, on efivarenz with all its lovely side-effects, mood swings, depression, occasional hallucinations etc. and Fuzeon's T20 which has quite literally saved his life a 3rd time.

He suffered chronic muscle wastage whilst on chemo for NHL and is not really able to work.
He was a top flight hair stylist for a west end salon by trade.
Got "made redundant" by his employer whilst recovering from cancer.
There are doubtless many law suits there but hey!
He suffers from lipidostrophy, neuropathy, muscle pain and is unable to stand or sit for any great length of time.
Additionally, he simply doesn't have the physical energy to lead the average person's life.
He cannot concentrate on a book for more than 3 chapters so how he would access further learning to retrain is a mystery.
He certainly cannot cope with going back to a full time career as a hairdresser.
He can't feel the ends of his fingers properly and so cannot hold a pair of scissors to cut....
He's not exactly academic, physical labour is out, so one wonders what he could actually do to earn a living if his DLA is withdrawn.

We have recently had the joy of the DWP letter which has sent him into a panic.
I too subscribe to the "no news = good news" idea but am concerned.
I've just been made redundant 4 days ago so supporting us both from 1 salary is going to be impossible.

His consultant at St Thomas' has been very helpful. He's made us aware that he's been inundated with requests for medical information from DWP. Seemingly everyone with a blue badge is under scrutiny.
Now, as my partner was given 3 months to live at the time of his life-time award, it could be argued that his circumstances have improved, if you are to interpret the letter of the law literally.

We have been told to be quite methodical in the letter we are going to send to his consultant and other physicians attending.
Essentially, one needs to provide a complete medical history charting all/any diagnostic sequences. Treatment history and any side effects need to be included, effects on one's ability to live "a normal life" need to be explained including mobility & mental health.
Finally, some allusion to prognosis has to be made.
In reality, my partner will be lucky to survive another decade, it's unlikely he'll make it to the DLA cut off age-65, so one hopes some bored official in a badly decorated office in Blackpool isn't rushing home to watch the X factor and is bothered!

Anyone out there who has had a DLA review for a life-time award and has received their results, please post.

I am going to be contacting what's left of the gay press to see if anyone is prepared to at least commission an article on this issue as it affects quite a large proportion of the older community."

A developement came in the post this morning..

My partner is also having his DLA review. Having given full details of all the consultants he see's. This morning a form arrived from the DWP stating that as there had apparently been a change in his health they required further information. The form for him to complete is DLA556 Adult 10/07.

This seems to be a new application form to apply for DLA.

What is interesting is that. Though he fully disclosed all medications and consultants contact information. They only sought a medical report from his HIV consultant. Some of the questions asked would have been answered fully & medically had the DWP gathered medical reports from ALL the information he provided.

We will now research the problem and look for other avenues of advice & report.

It seems that this review exercise is merely changing "indefinite" or "for life awards" to the regular review process.

For my part I have yet to hear anything from the DWP. I have not yet received the copy of the medical report I asked for. Some would say the no news is good news. But I am rather anxious I have to admit.

From Wharfside Patients Forum.

Thanks for this - I was only talking about the reviews of DLA this afternoon with Positive Nation. I've had a look at your blog and passed details onto a couple of other people, including Positive Nation = they want to do a feature on this in the February edition.

In case you hadn't realised, there are actually two separate reviews of DLA going on at present. One is across the board and is called the Right Payments Programme (make of that what you want) and the other is a review of claims that went in with a DS1500 and the people concerned are still alive long after the six months they were expected to live at the time the claim went in.

One of the best sites I've found for information about DLA and benefits claims in general is benefits and work, glad to see it listed on your set of links, only thing that might put people off is the subscription, but what the heck they stand to lose a lot more than £16.50 if their DLA is cut off.

Under the Benefit Integrity Project around 50% of people got their DLA withdrawn, appealed and got it back. Some people ended up with more than they started with, but it is a process that people really need help with unless they have a lot of courage and energy and the right knowledge or advice.

I will put a link on our forum website to your blog and have already advised someone else to have a look at it.

Well done for all that research

Best for now


Wharfside Patients Forum Website

Disability Alliance attendance allowance and disability living allowance case law digest

The Disability Alliance. has published some case law on Attendance Allowance under the title of this entry.

Click here for the Disability Alliance attendance allowance and disability living allowance case law digest.

Click here for Disability Alliance - Adjudication case law digest.

And for latest posted decisions, click here.

BBC Ouch!

Though not directly linked to HIV here are some forum posts of those with other disabilities who are being assessed.

BBC Ouch! click here.

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.

Medical Form.

If you have been reviewed and are unhappy with the decision. It may be due to the fact not all the medics you have listed on your form have been approached for a medical report. HIV may be you main condition. However you may see other consultants for other conditions which worsen your abilities i.e. a pain consultant.

If you have not requested it. Ask for copies of all the medical reports the DWP has asked for.

If some of your consultants have not reported prior to a decision being made. Appeal on the basis that not all or full medical information on you has been sought and considered. Therefore the initial decision is flawed.

Following on from previous post.

"I think I did not make my point clearly.

DLA should be in place before the need becomes so critical that it HAS to be there.

I don't think its right to hang on till you meet the current level before applying or even waiting till they raise the requirements again.

So what if that means that a very few people get DLA who don't actually need it at the time. It should be seen as a preventative measure to stop those people becoming sicker. The money is actually quite a small amount in terms of the UK state spending on health and care.

I wish everyone in the uk who can applie for benefits does, thats why we pay are taxs after all. I hope they don't raise the bar higher and good luck fighting it."

Thanks - though this is affecting roughly 50,000 people of all disabilities. It amounts to a few thousand who were HIV and applied under special rules at the time.