Wednesday, 22 February 2012

Nothing About Us Without Us

I totally agree when it come to HIV and from living with HIV it has to be.......
Nothing About Us Without Us
This did not happen in this case - not at all!
http://www.worldywca.org/Resources/YWCA-Publications/Report-from-the-HIV-Positive-Women-s-Forum

Best slogan anyone has ever come up with when it comes to any support, medical care or anything for those of us that live with HIV

This is the only way it can be and have any meaning at all to us that live with HIV??

So I get very angry when this is not done . Especially by the charity that is supposed to be our only support charity in Cornwall for those of us with HIV, does not do this.

You may say - And they WILL say. Why should we be included or consulted?

But why NOT?

And what does it cost to include us?

One email, perhaps, maybe one phone call, maybe a meeting?
A phone call or two, just a smidgen of information that you were at KPS even applying for this lottery grant , might have been just slightly nice for us to know ??

To be consulted would have been even better

Thank you so much for involving all us in Cornwall that live with HIV - Nothing About Us Without Us - Great you abide with this
To invite your charity volunteers and clients/users ..whatever you wish to call us  to a meeting is of course was out of the question and I would never expect that.............Actually I so lie I as  of course you should have invited us all to such a meeting

This actually  is not about you KPS, it is about us?
Did you have a meeting  about this lottery application and NOT invite your volunteers, or service users??

And on a very personal level I would like to know ............?

Are me and Barry volunteers or clients  in your eyes n fact?? We would both like to know where we stand?

- I would like to know as it seems to me we are volunteers when it suits you and we can help or use us, and clients when it does not ??

Thank you so much KPS for your extensive and ongoing support to us - me and Barry!!

OK get real here.

Some of the trustees of KPS have HIV - maybe all of he current trustees do???
We do so get that, and some who were trustees have died and we are so VERY sorry

But the minute you start a charity it ceases to be about you the trustees , those who founded it, those who went before .

It is about those who your charity are supposed to support now and their needs, now


This is a very hard  concept as I so well know as I started a charity myself www.pni,org.uk in 1998 and I have long had to understand that even though I suffered PNI this charity is not now about me , but it it is about those who use it, currently at any one time .
I think the  the trustees of KPS have yet to learn this very important lesson
Actually f***ing angry . As KPS my  HIV charity - that is supposed to support me - I fel has let us down.

As aI feel inclusion comes along with support or indeed is a HUGE part of support as I and my husband live in Cornwall with HIV we shoudl have ben included, consulted and ben part of this decision as we are some of those this charity is supposed to be supporting here in Cornwall.

But recently this charity was awarded 250,000k http://kernowps.co.uk/ind.htm

http://www.bbc.co.uk/news/uk-england-cornwall-16801425
http://news.biglotteryfund.org.uk/pr_310112_rc_sw_support_to_south_west_groups?regioncode=-sw

First I heard of it was when I was asked by the BBC to comment on it??
As we were NOT. NOT at any time consulted at all . Nor was anyone else I personally know in Cornwall who lives with HIV consulted, or even told??
What is going on here?? Is this OK, no it is not at all - well not by me.
And we  have certainly not been consulted about what this money was applied for or where this money will be spent??
I had never even heard of it in fact until someone  Radio Cornwall rang me and asked me to comment? Sadly even Radio Cornwall got it wrong as they said this money was awarded to ' get those with HIV in Cornwall back to work'
I almost had to laugh?~
  • The concept of going back to work a full week is really out of the question for me and indeed most I personally have met in Cornwall who live with HIV
  •  I am NOT for a minute saying we do not want to work , those of us that live with HIV in Cornwall my want to but can not  . 
  • This is for another blog post for me to explain why for many this is an impossibility for me, my husband and many to now work full time

But actually the guy from radio Cornwall was wrong, it was not awarded to get us with HIV 'back to work '
Apparently it was awarded to do this :

The first strand of the 'KPS Enabling Futures Project' will provide fully funded respite at KPS Trebullom nationally. During the complimentary three day stay participants can access a range of workshops related to understanding welfare reform and how to disclose their HIV status to others, including skills workshops. Participants will also be able to access a range of complementary therapies and enjoy excursions to local tourist destinations and attractions in Cornwall

In addition KPS will be providing children's Summer Camps for children affected by HIV nationally. The third strand of the project is to provide a better understanding of HIV through an extensive HIV awareness training programme for local schools, statutory agencies, businesses and the general public throughout Cornwall and Devon.

I had to say to this journo I had no idea what this was about, or even what charity had got this money, or what for?? As even as someone living with HIV in Cornwall I had no idea and had not been consulted at all so I simply just did not know ??

As in fact KPS,  they never bothered even to tell me?
OK you may think? Why should they inform me or my husband?


Or why inform my 3  friends and 6 others I know personally and many more I know of, that will not be named but also live with HIV in Cornwall.
What may you ask does it have to do with us? Why do we care?

Actually a whole lot.
As if we live with HIV and in the County of Cornwall and the only charity nearer than a 2 hour drive from us has been awarded 250,000k we need to know about it and we want to have a say where it is spent.
Yet when it was awarded it was assumed by the media that I knew all about it ??
As Radio Cornwall and the local TV news phoned me and asked me to comment but I said I just could not as I had to say I did not know , as they,  KPS, simply had not told me??
So how could I comment if I did not know?? And how could I if I not know .  I a local person living with HIV in Cornwall? I did not know anything about this? How good was that??

They had not told me, someone that lives with HIV in Cornwall, or my husband  and both of us are 'supposed ' to be a KPS volunteer??

They had not told us , consulted us or involved us in any way
Thank you so much KPS
I have a profile with the local press that you seem to ignore.
So I think when asked to comment by the local radio, TV etc , I really think you should have a least told me ???

I guess on one hand as I have HIV am only supposed to be what they call a client so I do not figure

And I so hate that name ,and I am no ones client. But this is what they.....at that charity call us both!!!
 Yet both me and my husband are also registered volunteers with them ....... Believe me we have done our time over the last year or so supporting others when we can.


Of course I can not go into it but we have done what we can . You can not have it both ways
Either we are volunteers and you consult us, or we are not

And anyway you should be consulting everyone not only those who are not volunteers but what you sadly call clients.

Oh come on KPS, most of your trustees are positive? Where are you at??
Really where are you at?? So trustees are not clients but us that use your services are - double standards and total disrespect comes to mind

And also I have been in the local and national media often - so why do not KPS use what I can offer ?
But you can not be bothered to tell us, or involved us KPS - well your loss? I am so angry



But we are of course only clients and those with HIV are not consulted or important - thank you so much KPS

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