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Author Topic: Cornwall UK  (Read 3556 times)

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Offline Veritee

  • Member
  • Posts: 180
    • Post Natal Illness Support
Cornwall UK
« on: May 27, 2008, 06:53:09 AM »
I know that it is probable that no woman with HIV from Cornwall UK, or even from the UK will read this but just in case I thought I would tell you here about a network for women with HIV or who have children and partners with HIV I am trying to set up in Cornwall UK.

To further this I did an interview for local Radio
 Which went out today

I did an interview about the Network for women in Cornwall I want to set up . KPS, Kernow Positive Support - a local charity for people with HIV is helping/supporting me with this and trying to get funding

It appeared today as a small news item about the HIV women's network specifically for women with HIV in Cornwall went out on BBC Radio Cornwall today in the news section.

And then afterward on James Churchfield's programme this morning several times from 7 am.

You can hear it all again on iplayer at: http://www.bbc.co.uk/radio/aod/mainframe.shtml?http://www.bbc.co.uk/radio/aod/cornwall.shtml
James Churchfield (3 hr)
Broadcast on Radio Cornwall Tue 27 May - 06:00

The latest news and information to start your day
___________________________________________

You can hear my interview and an interview with a representative from 'Positively Women' in London, UK and a statement from the UK government about money for social care of those with HIV.

(not that I believe what they said as I as someone with HIV have not received so far, nor have been offered any,  'social care' counselling or anything funded by the UK government for HIV. Apart from my essential HIV  medications and NHS health treatment - which DOES NOT include any element of social, personal or counselling care!! - The charity KPS have given me 5 counselling  sessions -  but government funded initiatives have not. They have provided my medical care, for which I am grateful - but then again I have paid in to our UK National Health Insurance scheme for over 35 years so I am entitled to medical care even for HIV, BUT I have had no care to cope with the shock of being HIV positive or my mental/emotional situation)

Anyway

If any women who lives in Cornwall, UK  and has HIV - or indeed any woman who is a partner of someone with HIV or a child with HIV and is negative themselves, wishes to discuss the possibility of this network and what I am looking at this consisting of..............

Please do get in touch with me on here, or phone KPS, Kernow Positive Support
Website: http://www.kernowps.co.uk/

Office hours: Monday to Friday 10am - 4.30pm
Fax: 01208 77950
e-mail: office@kpsdirect.com
Website: www.kpsdirect.com

Helpline: Tel: 01208 264866

And ask them to give you my phone number, or leave your name for me to phone you back.

Love to you all

Veritee XX 
 
 
I have a blog here, please do not judge me on what I say here- I need to offload and this is where I do it: http://hiv-and-us.blogspot.com/

Offline nottsnicola

  • Member
  • Posts: 12
Re: Cornwall UK
« Reply #1 on: July 07, 2008, 07:51:43 PM »
Hi Veritee and all the people on Aismeds,

27 May Veritee you posted this message and no response from Aidsmeds. All ladies/people out there- do you all see a message from the UK and switch off? Why are you so cliquqee? (not sure that exists as a word but you know what I mean). Don't you have to admire other people for trying?

Veritee - sounds like you are doing a fantastic job, promoting your local HIV charity group. Sorry I can't listen to the broadcast as it has a time limit, and I'm reading this in July. But well done all the same.

Love and hugs,

Nicola xx

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,618
  • Diagnosed + 1989
Re: Cornwall UK
« Reply #2 on: July 07, 2008, 09:38:34 PM »
Nicola,

Veritee has posted in another place (dating threads) about her accomplishments and we have congratulated her fully.  Your coming on here and throwing accusations around is not appreciated-at least by me.  If you really want to get to know us, maybe you should stop being "cliquqee" and join us in the dating thread so we can get to know you.

Sincerely,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline nottsnicola

  • Member
  • Posts: 12
Re: Cornwall UK
« Reply #3 on: July 15, 2008, 04:43:43 PM »
Betty,

Fair comment. I'm really sorry about my post above - I apologise unreservedly. I could make loads of excuses - HIV, medication, HRT, being alone. Bottom line is I'm not in a particularly good place right now so I should stay off message boards...

Sorry to anyone I offended with my post above.

Nic x

Offline LFC

  • Member
  • Posts: 6
Re: Cornwall UK
« Reply #4 on: September 15, 2008, 08:27:36 AM »
 ;)
Hello from London,
I've just joined.  You are doing great work  there in Cornwall.

Regarding the point you raised about not receiving or having access to social care or counselling support. I totally agree. It sounds like provision is better in London I guess because of most of the poz people are here. I was lucky because I was diagnosed in hospital (PCP), in Barts and was placed on a specialist unit (March 06). I was seen by a dietician, physio and clinical psych. But this was down to me, because I told the drs what I needed. And that is the problem, you have to be assertive at a time in your life when you need someone else to take control and guide you. I must admit that the care I recieved was excellent. My husband and I like everyone in our situation were shell shocked. A dr even took him to the clinic to get tested. I'm sure if I need to go back for more counselling I'd be a on along waiting list and given only 12 sessions of CBT !!!!

Anyway 2.5  years on and we are both doing fine - he tested poz too.

Counselling support tends to be time limited and is considered expensive. Funding tends to go to services who can provide the cheapest option, and this is group work, which is effective but is not the same. I work in substance misuse (vol sector) and it is the same.

I'm going to check out you radio interveiw. I wish you all the very best in what you are doing. You have more courage than me.

kind regards
P

Offline Veritee

  • Member
  • Posts: 180
    • Post Natal Illness Support
Re: Cornwall UK
« Reply #5 on: December 31, 2008, 08:48:47 AM »
Thank you LFC, Nicola, Betty and anyone who responded on this or my other posts on this subject - and thank you all so much for your support.

Sorry I did not reply before but I have only just seen it due to having time off the boards to sort a few personal things out and due to other commitments.

People have indeed acknowledged here what I have tried to do since I was diagnosed especially in the woman section of this forum  - BUT I really do not post about what I am involved with in the UK to get any personal acknowledgment or praise.

The reason I do is because when I was diagnosed and for at least for 2 to 3 months afterward there was a time when I was so absolutely desperate to meet others in the UK, and especially other women, who are living with HIV, preferably in person but if not in person, at least online.

But despite trying desperately I was not for some very dark and desperate weeks able to meet anyone in person and certainly no women and no one online except men, who were great. But I wanted - and felt I needed - to talk to other women living with HIV in the UK!!

This was especially important to me in the first month when my husband was in hospital with AIDs/PCP and I truly thought he would die ( and his doctors felt this was a possibility too) at a time that my CD4s were also very low and I was unwell,  and I was home alone with absolutely no one to talk to who had any idea of what I was going through or could reassure me about living with HIV, the possibilities of his and my living with a quality of life or at the very least give mutual/peer support

( for some reason I can not explain that while I scanned the internet desperately every day for online groups and forums where I could talk to people with HIV, especially in the UK, especially other women I did not find this forum for about 3 months, I do not know why)

I was eventually able to meet up with the workers from my local HIV charity  but not for at least 6 or more weeks as they have a policy not to give full access to support until you have an official diagnosis from the local or another clinic that they can view - but not all the charity's support workers have HIV and only one of those I met face to face in those early days has HIV - and all were men ......  none were women and it was several more months before I met any of their other 'clients'.

So it was not for some months that I was able to talk to any women living with HIV at all - and then most of them online on this forum, nor had I at that point found any active women in the UK living with HIV that I could relate to on a personal level either online and certainly not in person - If I phoned HIV helplines in the UK I always got a male support worker.

I did of course find and eventually talk to Positively Women in London a few times to a support worker

( as this is the main, and one of very few, support organizations in the UK for women living with HIV there are only about 2 more and all are based in London and I live nearly 300 miles from London and was too unwell to travel and my husband was in a Local hospital so I did not feel I could travel anywhere)

 but I guess also what I wanted was not one way support but something more personal than this - a two way relationship, a friendship, with another woman or women living in the UK with HIV and so who faced similar cultural and other issues. I did eventually find wonderful women through that organization and PozFem UK: http://www.poz-fem-uk.org/  who are so active in HIV awareness etc and have been doing marvelous work for many years that I could relate to on an activist level and that is great too, but right then, at that awful traumatic moment of my life, I wanted to exchange care and support on a personal level.

So I post about what I am involved with in the UK on here for one reason and one reason only.

So that if any other woman newly diagnosed with HIV living in the UK stumbles into here she will find out that there are other women in the UK who want to support her and understand what she is going through.

 and not feel like I did  i.e started to feel absolutely alone and there is no one in a similar situation, living in the UK,  as her that she can talk to on a person level -

My hope is if they find my posts they will contact me or if they do not want to talk to me I can put them in touch with the organizations I know about now - and that they will know there are a few woman's groups and organizations in the UK and for women living with HIV in the UK trying to change awareness for women living in the UK so that they get the support they need and deserve - that there is some caring for them and awareness that they/we exist.

Because my overwhelming feeling when I was in that very lonely and hard/dark place was that I did not exist, no one knew or cared that I existed - I was not male, I was not gay, I do not live in the states, nor am I poor and in Africa etc so my situation is very different from those in the states as we have a very different medical system but little awareness of HIv as an issue for those in the UK and very different from those who live in countries where they are not privileged to get the medications and good medical care I get - yet my issues were just as desperate for me in my own way .................... and I do not even live in London but in a very rural area where I could find no support or even much acknowledgment that any women in my area lived with HIV, so I felt invisible!!.

So I post in the hope that other women who feel like this from the UK - and I know they are there and many of them - especially those newly diagnosed -  will see what I write and contact me or the organizations I mention.

I also really can not, or want to,  take any  credit for the work being done by those organizations to raise the profile of women living with HIV in the UK, so I only say 'I am now involved in this work' not that it is down to me.

As the work was started by many brave and selfless women many of whom have lived with HIV for many years and have given so much of their precious time to assisting other women in the UK with HIV - the credit goes entirely to them.

But they do not post on this forum, at least I have not seen their names so I do not think so? I feel that this is because they are very busy and committed people who have an overwhelming workload and so not have the time to post in here.

Therefore as I can not talk about them but only about me,  I am only doing my very small best to raise the profile on this forum of UK women LWHIV so that anyone from the UK, especially women,  who finds this forum and does not have support or feels alone in the UK  will know there is some support and understanding for them in the country they live in.

Which is also why I want to keep this thread active.

Thank you for reading all this if you did


Veritee
« Last Edit: December 31, 2008, 10:58:20 AM by Veritee »
I have a blog here, please do not judge me on what I say here- I need to offload and this is where I do it: http://hiv-and-us.blogspot.com/

Offline Veritee

  • Member
  • Posts: 180
    • Post Natal Illness Support
Re: Cornwall UK
« Reply #6 on: December 31, 2008, 09:01:53 AM »
Thank you LFC, Nicola and everyone who responded on this - and thank you all so much for your support.

Sorry I did not reply before but I have only just seen it due to having time off the boards to sort a few personal things out and due to other commitments.

People have indeed acknowledged here what I have tried to do since I was diagnosed especially in the woman section of this forum  - BUT I really do not post about what I am involved with in the UK to get any personal acknowledgment or praise.

The reason I do is because when I was diagnosed and for at least for 2 to 3 months afterward there was a time when I was so absolutely desperate to meet others in the UK, and especially other women, who are living with HIV, preferably in person but if not at least online.

But despite trying desperately I was not for some very dark and desperate weeks able to meet anyone in person and certainly no women and no one online except men, who were great. But I wanted - and felt I needed - to talk to other women living with HIV in the UK!!

This was especially important to me in the first month when my husband was in hospital with AIDs/PCP and I truly thought he would die ( and his doctors felt this was a possibility too) at a time that my CD4s were also very low and I was unwell,  and I was home alone with absolutely no one to talk to who had any idea of what I was going through or could reassure me about living with HIV, the possibilities of his and my living with a quality of life or at the very least give mutual/peer support

( for some reason I can not explain that while I scanned the internet desperately every day for online groups and forums where I could talk to people with HIV, especially in the UK, especially other women I did not find this forum for about 3 months, I do not know why)

I was eventually able to meet up with the workers from my local HIV charity  but not for at least 6 or more weeks as they have a policy not to give full access to support until you have an official diagnosis from the local or another clinic that they can view - but not all the charity's support workers have HIV and only one of those I met face to face in those early days has HIV thenselves - and all were men none were women and it was several more months before I met any of their other 'clients'.

So it was not for some months that I was able to talk to any women living with HIV at all - and then most of them online on this forum, nor had I at that point found any active women in the UK living with HIV that I could relate to on a personal level either online and certainly not in person - If I phoned HIV helplines in the UK I always got a male support worker.

I did of course find and eventually talk to Positively Women in London a few times to a support worker

( as this is the main, and one of very few, support organizations in the UK for women living with HIV there are only about 2 more and all are based in London and I live nearly 300 miles from London and was too unwell to travel and my husband was in a Local hospital so I did not feel I could travel anywhere)

 but I guess also what I wanted was not one way support but something more personal than this - a two way relationship, a friendship, with another woman or women living in the UK with HIV and so who faced similar cultural and other issues. I did eventually find wonderful women through that organization and PozFem UK: http://www.poz-fem-uk.org/  who are so active in HIV awareness etc and have been doing marvelous work for many years that I could relate to on an activist level and that is great too, but right then, at that awful traumatic moment of my life, I wanted to exchange care and support on a personal level.

So I post about what I am involved with in the UK on here for one reason and one reason only.

So that if any other woman newly diagnosed with HIV living in the UK stumbles into here she will find out that there are other women in the UK who want to support her and understand what she is going through.

 and not like I did  start to feel they are absolutely alone and there is no one in a similar situation, living in the UK,  as her that she can talk to on a person level -

My hope is if they find my posts they will contact me or if they do not want to talk to me I can put them in touch with the organizations I know about now - and that they will know there are a few woman's groups and organizations in the UK and for women living with HIV in the UK trying to change awareness for women living in the UK so that they get the support they need and deserve - that their is some caring for them and awareness that they/we exist.

Because my overwhelming feeling when I was in that very lonely and hard/dark place was that I did not exist, no one knew or cared that I existed - I was not male, I was not gay, I do not live in the states, nor am I poor and in Africa etc so my situation is very different from those in the states as we have a very different medical system but little awareness of HIv as an issue for those in the UK and very different from those who live in countries where they are not privileged to get the medications and good medical care I get - yet my issues were just as desperate for me in my own way .................... and I do not even live in London but in a very rural area where I could find no support or even much acknowledgment that any women in my area lived with HIV, so I felt invisible!!.

So I post in the hope that other women who feel like this from the UK - and I know they are there and many of them - especially those newly diagnosed -  will see what I write and contact me or the organizations I mention.

I also really can not take any  credit for the work begin done by those organizations to raise the profile of women living with HIV in the UK, I only say 'I am now involved in this work'.

As the work was started by many brave and selfless women many of whom have lived with HIV for many years and have given so much of their precious time to assisting other women in the UK with HIV - the credit goes entirely to them.

But they do not post on this forum, at least I have not seen their names so I do not think so? I feel that this is because they are very busy and committed people who have an overwhelming workload and so not have the time to post in here.

Therefore as I can not talk about them but only about me,  I am only doing my very small best to raise the profile on this forum of UK women LWHIV so that anyone from the UK, especially women,  who finds this forum and does not have support or feels alone in the UK  will know there is some support and understanding for them in the country they live in.

Which is also why I want to keep this thread active.

Thank you for reading all this if you did


Veritee
I have a blog here, please do not judge me on what I say here- I need to offload and this is where I do it: http://hiv-and-us.blogspot.com/

Offline Veritee

  • Member
  • Posts: 180
    • Post Natal Illness Support
Re: Cornwall UK
« Reply #7 on: December 31, 2008, 09:04:28 AM »
so sorry - don't know how that happened!! Did not mean to quote my own post!!!! only modify as I am dyslexic and the spelling was bad - sorry, how do I delete the quote?
« Last Edit: December 31, 2008, 11:02:05 AM by Veritee »
I have a blog here, please do not judge me on what I say here- I need to offload and this is where I do it: http://hiv-and-us.blogspot.com/

 


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