Though it was high time I shared some more on here.
It has been overwhelming the support from people since starting this a the beginning of the year. A working team of people.
What is clear is that there is a need for you & I, as service users or patients, to have a voice. So much is spent and done in our name. The services that are available, how we are treated by the state etc.
I had some preconceptions before I started this about the HIV service & Health sector. I would like to say that these were in the main wrong. Alas no. I am quite worried about the level of politics that seems to be about especially in HIV service provision.
What's good is that other's are seeing the benefit of bringing ordinary HIV+ people more into the process for service delivery. How that materializes with those groups remains to be seen.
For me this has always been about supporting & sharing information. Allowing those who can not speak up to channel their point of view through the websites or through me, via email.
Tcell the idea. Is to grow a network of groups run by and for the interests of HIV+ people across the UK. Volunteer led to work in local communities to provide a local voice. To bring all those groups together to speak with one loud voice when needed on national issues. Groups who answer to there local communites and no other organisation (i.e. NHS or HIV service provider etc.) To hold those who provide us with what we need to account. Where necessary to campaign for change.
We aim never to be relant on funding or support that diminishes our independance and freedom to speak up.
If you are interested in trying to start a local group elsewhere in the UK and need advice & support and want to join the Tcell team. Feel free to email at john@tcell.org.uk .
I am, just like many. Someone who is new to this. I have never been involved in the HIV sector like this before. I have learnt much and am happy to share and support where possible.
Empowering our community is key. Helping people to stand up and be happy to be identified as HIV and having a supportive community. I am always guided by the need to overcome the stigmatism of having HIV.
Sometimes I cannot help but feel that existing services supposed to be "for us" talk of "support" but don't necessarily "walk the walk". I feel that those that are happy to say they help us actually encourage us to remain dependent "institutionalized, without the walls". It aids them in their agenda and of course funding, because we are kept down and our voice silenced.
So the question. What do you want from a HIV service provider? What do we want from our Doctors? Lets get the debate started. Stop being told what we need, and ask for what we believe we need.
Thanks as always for your comments.
John.
