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.

The KVN Forum.

This entry concerns patients accessing the HIV services the Chelsea & Westminster Hospital. Namely - Kobler Centre, Victoria & Nkosi Johnson Clinics.

However I post it for general consumption under the auspices of sharing experience.

It was good to see so many at a meeting given over to the DLA issues for patients of these clinics.

Many questions were raised. Of course they encapsulate certain key themes, whats happening?, how do I get help with my form? What will I do if my income falls? etc .... Of course many are anxious & scared.

Some, including myself, tried to give the group the benefit of what we had learned. It is important to note that we and I are in the same boat as everyone. I am not lawyer or a welfare rights worker and cannot tell you or help you to fill in the forms you recieve. All we can do, using the tools at our disposal - Patient Forum groups, Internet, Media etc .., is to share our collective experience to further understand the "picture" here and make the "powers that be" aware.

Existing services are thin on the ground and over stretched. Not everyone is going to be able to get direct help. Whilst this needs to be addressed it must not distract from the core process of providing the information.

In many cases I am afraid. It maybe a case of having to "get off your arse" and do the work yourself. Use this site and others to get the information and research the answers to your questions.

That is the honest truth of it unfortunately.

Engage with your HIV services, take part and raise this at your treatment center's & it's Patient forum. Use these forums and this site to share your experience so we can all learn.

If you need more time. Ring the DWP and ask.

SPEAK to your HIV Consultant when you get the DBD551 form.

Just a reminder that if you are a patient covered by the KVN Forum. There is a meeting tomorrow evening with Lisa Power of the Terrence Higgins Trust. Click here for original post and links.

Lisa Power from the Terrence Higgins Trust attended the KVN Forum this evening to brief us on the activities of THT with respect to the DLA review.

Thank you to Lisa for providing us with this data.

As of the 30 May 2008 - this relates to HIV cases.

1477 claims had been cleared by the DWP.

882 claims had been reduced or disallowed.

141 claims had been re-reviewed. Of these 99 had been cleared and of those 45 had the original decision overturned.

114 claims had been appealed. Of these 54 had been cleared. 51 had been "lapsed" ( this means the DWP changed their original decision before the appeal hearing ) & 1 decision was overturned.

The term "cleared" refers to claims that have been processed. The difference between for example the 141 claims for re-review and the 99 cleared are those that are still being processed at the time the information was made available.

 Lisa Power from the Terrence Higgins Trust attended the KVN Forum this evening to answer questions from forum members on the DLA Review.

In due course the minutes will be placed by the Chairman on the KVN Forum website.

Questions were drafted in advance of the meeting from members and presented to Lisa for her perusal.

What follows are the points that I picked up.

THT was invited to take part in the DCS Advisory Panel about a year ago.  At the time their membership of this panel was subject to a binding confidentiality agreement.  THT considered it's position on this. They decided it was better for a HIV organisation to be involved to try and make the case for those living with HIV in the UK.  Lisa works with another colleague on this panel.  They managed to get members of BHIVA to also advise on the issues face by HIV people in relation to review, the impact etc. As mentioned they made the case, whether they were listened to by government was another issue. THT were unable to comment until the review pilot started.  THT still meet every 3 months or so as a member of this board.