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?

 

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

My first reaction

http://hiv-and-us.blogspot.com/2012/02/nothing-about-us-without-us.html

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

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