I have been engaged in correspondence with Lady Gould.  Though we differ on the role of THT.  I am greatly encouraged that on the subject of HIV+ people, we have another friend in the House of Lords.  

She has taken the time to read our correspondence and reply thoroughly and she has my sincere respect for this.

From her correspondence and passing the information on. There is mention of a programme which will be similar to the "Positive Futures" project that was run by the UKC.  I am in touch with the organisation she mentions and await full detail. I will blog on this when it is received.

Also, Lady Gould mentions http://profiles.yahoo.com/positiveactionuk as "a yahoo group solely for people living with HIV. It was formed out of a recent conference for people living with HIV- with the aim of creating a campaigning voice network for the HIV community, not run by any official organisation".  I have no experience of this group and my mention is not to be taken as a recommendation. You will have to find out for yourself.

This may sound familiar to what www.tcell.org.uk is trying to achieve. It is the same. Only my picture is all over the place on the website so people know who I am and can approach me when I am in clinic or in a meeting.

I am keen to break down the existing barriers that organisations seem to but in place with regard to supporting one another (largely down to funding). If this method works for you I am pleased.

Thanks to Lady Gould for bring this information to our attention.

John.

In the email this morning I heard of someone who has lost there entire Disability Living Allowance. A process that started in January. It has taken the DWP 6 months to deal with this.  Appeal is an option but what fails to be understood is that this brings with it pressure and stress as it involves preparing your case.  I always encourage people to appeal and an ORAL appeal rather than written. However I am also very aware of why people would not want to pursue this and fully support any decision they make.

This is the reason I will continue to use my efforts to raise the issues around HIV & benefits. Seeking a fair, properly considered case for those of us for which it is our only income.  I may have recieved a favourable decision but I see this as merely one hurdle passed this time around and now campaign for the future.

Though this was prompted by the "Special Rules Review".  I become more concerned with those who are making new claims today. As is the nature of any progressive illness, people claim when they need the help. I am concerned at the disparity HIV+ face filling in forms that are very general in nature. I am also concerned with one case that the DWP don't seem to consider the cumulative effect of many illness a claimant has in addition to HIV. 

I think I can generalise and say. It is not that we as HIV+ people feel we should be treated differently. But we absolutely demand we are treated fairly and properly. If that means changing the DWP process to fully inform decisions made completely consider matters from a definite perspective of HIV than so be it.  They can start with the general nature of existing forms, that skews this perspective.

John.

The HIV clinics of the Chelsea and Westminster Hospital - Kobler, Nkosi Johnson & Victoria clinics. Have a forum for HIV patients that attend these clinic's.

If you want to get involved because you are a patient here or want more information see http://www.kvnforum.net . 

Your own HIV clinic may also run a similar forum for it's patients. Ask at your clinic for information if you want to get more involved in your care.

KVN Forum & Terrence Higgins Trust (THT).

At the May 2008 meeting. Lisa Power was to have attended. However her diary commitments left her unable to attend in person but two of her colleague's were sent to address issue's the forum had. It was a robust meeting.

Lisa did say she wanted to attend a future meeting of the Forum to address issues directly. Especially as some of the questions raise,  her colleagues were unable to answer as they were on THT Policy.