KVN Forum meeting this evening.

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.

Personally I would like to have the time to help people on an individual basis. However that stops me being able to undertake the research that is of general use to us all. Of course I am ill myself & do have a family life. So if you have come up to me at a meeting and I have been unable to give you time or the help you seek. Please don't feel offended. Really the best way you can help is to contribute to the wider agenda use this portal thats whats it here for.

I understand the the forum is pushing back it agenda for the year. To facilitate further meetings on this issue.

It was apparent that many do not have internet access. Positive Nation should go some way to covering that audience.

As mentioned. A meeting is taking place tomorrow for the Kensington & Chelsea HIV Service Users Forum from 6pm to 8pm. The venue is The River House, Rutland Grove, Hammersmith, London W6 9FE.