Thursday, 23 February 2012

It really is about consultation and inclusion not sour grapes for me

It really is about consultation and inclusion and that any money that comes to Cornwall for those with HIV goes mainly to those of us that live in Cornwall.
I am sure many will think, reading this blog that it is sour graps that is,  but honestly it is NOT not about sour grapes for me. No way do I want to run a HIV charity nor am I in competition in any way. All I smply want is for there to be a hIV support and awareness service that first and foremost meets th needs of those of us that live with HIV in Cornwall.

I know that some are getting their needs met via KPS, it is not all bad. Mostly those who need benefit advice - I don't - accomodation - I don't - lifts to hospital  - may one day but currently I don't

What I want for me and others with HIV that do not need basic services like beneit advice, accomotation etc is to feel part of something, for my/our views to be heard, to be consulted as a women/man who lives with HIV.

Also for some activities, maybe a residental or two we can go to with others living with HIV, perhaps also a social get together now and then, or an activity or two we can do together.

But I and my husband never have been consulted, nor had any invites to any residentals or activities - apart from 4 womens groupa that seems to have died again that I in fact started , and one christmas lunch and 2 events t Trebullon that was to promote Trebullon and not specifically for us, we have got very little from KPS

We may not need benefits advice, accomodation or ongoing every day support etc   - but we count too?? Or don't we??


Fair enough if KPS was just set up to run a respite center tyhat is fine. And I am not saying a respite center is not a good idea.  And I have alwasy supported it. But it should be in addition to their services , NOT INSTEAD OF!
If they are going to run this they should become a split charity or two charities. One to run the respite the other to provide services and support for those of us that live in Cornwall with HIV - for one charity to do both under the same management and with the same staff is totally incompatable!!
But what do I know. I am only a client!?


Since this respite center has been happening it seems to me KPS is completly focusing on that and there are few services or support or anything we who are not near this center can access? There never was a lot. Well not a lot that we were ever able to access anyway
And now my worry, indeed my certancy, is with this new lottery grant, there will be even less outside of Trebullon respite Center for any of us?


As KPS ( Kernow Positive Support) just got 250,000k and not much of it is going to be spent directly on those of us that live with HIV in Cornwall that can not get to the respite center as far as I can see?
It is going to be spent at Trebullom and mostly on services for those that visit there and many of those who use these services will, as far as I can see,  be from outside the county of Cornwall?
And to promote awarness in partnership with schools etc??
Awareness is a great idea too and I really support this kind of work in Cornwall about HIV. I have been asking if I can do this kind of work with them ever since the day I was diagnosed as that is what I was trained to do and did as a youth worker. But they have NEVER asked me apart form one awareness day over 3 years ago!!!
But as a qualified teacher and Youth Worker who worked for over 14 years with schools and young people in Cornwall often on the issues of sexual health as I am trained in this,  and someone who now lives with HIV, I have asked so many times to be involved and consulted and to be part of and perhaps even present on such schemes . ( with the provison that I would love to take part but need it to be within a 20 mile travelling radius - NOT at Trebullon!!! As that takes me neatly an hour and a half to drive there and the same back ....it is just too far for me .
I will do a one off at Trebullon but could not commit regularly.
But never been asked by KPS.
Doubt even with this money I will ever  be asked even now - pigs might fly  - but I will wait in hope!

But I guess now I have writen this I will never now be involved ???
And actually do I care? As KPS has let me and my husband down in terms of doing anything much personaly that was useful to us , from the very first day of our diagnosis!
  • Anyone want to work wth me on starting our own support charity? - doubt it will work but honestly it may be mine and many others only option to feel we are being included, supported, consulted?
As what about consultation and involving those of us that live with HIV in Cornwall????
First I heard of it was when I was asked by the BBC about 10 days ago to comment on it??
And I said I couldn't as no one had told me anything about it or consulted me - a women living with HIV in Cornwall, or my husband or anyone else I know with HIV in Cornwall, at all
And I said I couldn't as no one had told me anything about it or consulted me - a women living with HIV in Cornwall, or my husband or anyone else I know with HIV in Cornwall, at all

So much for consultation and involvement of those of us with HIV??? and our families
I am so angry I could spit

Even if those of us that live in Cornwall can and do occasionally access those services at Trebullion, how practically can it be of any lasting or ongoing help/support to us who live the other side of Truro?
Even if they pay my fare or petrol - ys they do offer this but that is not the point - as I cannot drive up and down to Bodmin Moor from here just to get a little support? And I have a car. Many do not even have a car.

There is no public transport to Trebullon to speak of even from Bodmin. And sure KPS will say but they will give us or anyone who wants to go there a lift. But how many lifts can a charity with no full time workers and often no regular  drivers and often no real communication give?
And also there is a question of autonomy?
Maybe some of us with HIV do not want to be babied and always rely on someone else giving us a lift to somewhere , just so we can get support?
We might want to get there under our own steam, or be able to just ‘pop’ in for a chat.

It is bad enough for any of us more than 8 miles from Truro - we are 16+ miles away  -  to do this at the office at the GU clinic in the Royal Cornwall Hospital to just pop in when we need some support. But at least we can do so when we go to the clinic for our meds and our check ups , but even this does not include us in anything that may be more beneficial than just a quick coffee and a chat  
And as I and Barry get older this is going to be even less likely for me and Barry.
And there is a world this side of Truro and people with HIV and their relatives that live this side of Truro will not get much in the way of support or more impotantly in terms of this acess to the enhanced services and activities this money will pay for.

As far as I can see everything will now happen out of Trebullion and most of the money will go to those who use Trebullion and many from outside of Cornwall.
I am NOT saying a respite center is not a good idea. It is a great idea. Thre are too few of them. Only one other in Wales . But should a small charity be concentrating on this when they are not supporting those of us that live in Cornwall with HIV?

And as said before  it should be in addition to their services , NOT INSTEAD OF
KPS is 'supposed' also to support those of us that live with HIV all over the county of Cornwall and not all of us, very few of us,  can easilly access Trebullon

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