Stevie Wright , Easybeats and Bobby Limb

Looks like I am in very good company having 'experienced' so called Deep Sleep 'Therapy'

It seems that Stevie Wright of the Easybeats was also subjected to it: http://en.wikipedia.org/wiki/Stevie_Wright

As was Bobby Limb!!! http://en.wikipedia.org/wiki/Bobby_Limb
I am in good company then?

But they were both in Australia!!

WHAT I WANT TO KNOW IS WHERE ARE ALL THOSE IN THE UK WHO SUFFERED DST WITH ME AT THAT TIME ??

GEORGENA - WHERE ARE YOU NOW ? YOU WERE 15 AT THE TIME AND ALSO HAVING DST IN THAT AWFUL HOSPITAL

WHERE ARE THOSE DOCTORS, NURSES AND OTHER MEDICAL PROFESSIONALS WHO OBVIOULSY THOUGHT THAN THAT DST WAS A BENEFICIAL TREATMENT TO GIVE SOMEONE, ESPECIALLY A TEENAGE GIRL? - I WOULD LIKE TO KNOW THEIR VIEWS ON IT NOW AND WHAT THEY THOUGHT AT THE TIME?

I KNOW OTHERS EXIST AS WHEN I WAS BEING GIVEN IT THERE WAS AT LEAST THREE OTHERS IN THE SAME WARD OF PARK PREWITT HOSPITAL BEING GIVEN IT TOO

Where are you all?

Why do I want to know?

Well, It is not to blame anyone personally and I am not obsessive - truly I am not .

• If I had ever of dwelled on or been at all obsessed by this barbaric thing that happened to me as a teenager I would have surely tried to do something about it before

No ..................what has happened is having HIV has made me realize how short life could be and I have unfinished business I would like to resolve in some way.

One bit of unfinished business is that I was administered something called deep Sleep Treatment by the NHS for no good reason that I can see explained then or now - why I was subjected to such total abuse!!

I just want to find out why something like this was allowed to happen in a UK hospital and why those involved did not realise how destructive it was and how it totally infringed your person and your rights as a person as well as felt like abuse when you were the person having it.

And maybe I want to find out why it does not seem to be recognized that this barbaric practice was carried out within the NHS as little back and the 1980s and I suffered it .

As I have contacted various bodies and people in the UK and most thing that while DST did happen in th UK, it ceased in he 1850s - this was what MIND said of DST:

Hello Veritee.Thank you for your e-mail dated 19 March.

Deep sleep therapy was a 'therapy' that started at the end of the 19th century and was used in the early 20th century. Something similar has recently been suggested to help people coming off street drugs such as heroin - to sleep through cold turkey.

In 1897 sleep was induced with bromide. This is rather toxic, and they went on to use barbiturates. It was used to treat psychotic states. The idea was to induce prolonged sleep, after which people would wake up much improved.Some psychiatrists thought / found (?) that it facilitated psychotherapy.

In the 1950s someone in Canada went on to force people to listen to messages during sleep - brain-washing - to accelerate their recovery. The final stage of the history of this treatment seems to have been ECT several times a day- given during deep sleep, which also happened in Canada. You can find out a bit about this treatment in the book, A Short History of Psychiatry by Edward Shorter (1997), and possibly Roy Porter's book on the history of madness. These should be obtainable from your local library.

Mind does not appear to know that Deep Sleep Treatment happened in the UK and far beyond the 1950/60s!!!!!******

I probably will not succeed - is anyone interested anymore - I so doubt it!!! - but I may wish now to try

Here are some pictures of Park Prewitt asylum where I had the sleep treatment taken by urban explorers:
http://urbandesertion.squarespace.com/park-prewett/
http://www.28dayslater.co.uk/forums/showthread.php?t=17754
http://urbandesertion.squarespace.com/park-prewett/

How did I end up in a mental asylum having Deep Sleep Therapy?

I shoplifted!!

Actually by coincidence I worked at Park Prewitt when I first left school at 15/16 as an ancillary in the geriatric wards - I could write a book about this experience in itself as many in my care had been living in the hospital for 30 years or more!!!!

Some women only because they had had a baby out of 'wedlock' and had therefore been considered 'morally insane ' others because they had been abused and others because they were what would now be called 'slow learners' . Perfectly sane people but just a bit 'slow' educationally and due to this they had had to live in that awful hospital and be institutionalized most of their lives!!

But little did I know that within a matter of a few months of leaving I would also be an in-patient in that dreadful asylum...............................

- but I was made laid off - no fault of my own - really they just laid me off - and was unemployed and homeless, then I became ill and phobic , could not then work and and shoplifted to eat!!!

Yes I was caught when I shoplifted a few tiny things, as I did not live at home with my parents and with no work I lost my accommodation, I had no benefits in those days and I was hungry - but I was always rebellious and when I got to the police station I was not repentant because I had only shoplifted for food that I needed - I was homeless at the time and needed to eat. This is not an excuse it is the facts.

...................but remember - this was not 2008!!!

This was the early 1970s - young women like me were not rebellious - we did not speak back to police!! Young women in the 60s and 70s did what they were told - but I never did.

I was therefore not considered to be bad - I was considered to be mad!!

I had already had a horrendous time as a child and I was NEVER going to conform to the expectations of that day and how as a woman I SHOULD behave


I was prosecuted and put on 3 years - yes 3 years probation for shoplifting a couple of things from a food store including a small items of food so I could eat!!! and it was considered that due to my rebelliousness that women did not show then that I MUST be mentally ill

So I had to report to a psychiatrist once a month for the duration of my probation!! In the meantime I became scared and consequently really phobic - lets face it I had suffered abuse I was now on probation for nothing and trapped in the home that had lead me there

Anyway I became so phobic I rarely left my room - eventually I was carted off - under the probation order - to Park Prewitt asylum where I was given this dreadful Deep Sleep Therapy

As DST was thought in those days to 'cure ' rebellious' in young people or 'deviants' like me !! For what constituted a deviant, see book Dealing with Deviants: http://www.jstor.org/pss/589745 one of the authors Stuart Whiteley was latterly a psychiatrist at the Henderson where I went later and I was part of his study . We were NOT Deviants but young people who had mostly suffered abuse and other difficult childhoods or life experiences - Young people in any situation would NEVER be treated like this now!!!

Great to live as a experimental rat!!!!

I am now 55 and it has taken me most of my life to even accept what happened let along come to terms with it

People ask me now why I stay with a husband who gave me HIV

But compared to the rest of my life before I met him

He is the best thing that EVER happened to me!
Perhaps if you are reading this so far you will perhaps understand why?

Deep Sleep Treatment

I have been asked what Deep Sleep Treatment or Therapy was/is?

Most of what can be found about it is about what happened re DST in Australia and not in the UK!

http://en.wikipedia.org/wiki/Deep_Sleep_Therapy
http://www.cchr.org/index/17255/17280/17302/

It seems to have been completely forgotten that Deep Sleep Treatment was 'invented' in the UK and was continued to be used right up until the early 1980s in UK mental health Hospitals here!!

I was given DST around 1969/70 and within a NHS 'Hospital.

Although the little written about DST in the UK says that here it was done in a 'non -abusive' way and without putting your life at risk as it was administered by 'trained' medical doctors etc I experienced it at the time as HIGHLY abusive, traumatic and it left me with after effects in terms of memory and emotional trauma etc still to this day.

I felt abused then - and I still do now by what happened to me. I may not have died but I was still given:

'massive dosages of a cocktail of barbiturates and tranquilizers that knocked a patient into a 2-week coma'

and I was actually knocked out for nearly 4 weeks not 2! and some of the drugs I was given as I recall would never be given to someone of 17 now, nor in those dosages i.e largactile, Lithium, MAOs, along with at least 5 drugs keep me under a day - and certainly NEVER in combination!!! The side effects and ongoing consequences of any of theses drugs alone in this quantity are now known to be harmful and damaging - yet I was given them all at once!!!!!

But any attempts by me to even get it recognized that DST did happen in the UK has failed ...........that happened to me and while it probably did not put your very life at risk as it did when practiced by incompetent doctors in other parts of the world, it still leaves you with ongoing consequences for the rest of your life - consequences I still suffer! At least in Australia victims of this practice are able to fight back and have joined together and it is recognized what they suffered!

I have been told that there are not even any records that I had this therapy as my hospital records at the time were destroyed when the hospital/asylum I had it in Park Prewit Basingstoke, closed!!!

But in one way I suppose it did me a favor - as after that I then started to fight and NEVER again took any issue life had to throw at me lying down

Why?

I was asked the other day why I do what I do?

i.e

• Why if I experience a tragedy or difficult issue in my own life do I then use my own experience to campaign to try to change things for others .
• Why do I go public with things that others might want to keep to themselves and perhaps be shamed by? i.e Abuse, Mental Illness, Post Natal Illness, now HIV.
• Why am I angry and proactive about theses issues rather than accepting and just quietly getting on with living and coping with them as most do.

Well this very old and well known poem by Dylan Thomas sums it up for me so well as I guess it has for so many people like me who can not just go quietly are determined to make some sort of difference

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.


For some reason my life has never been easy i.e -

Early sexual abuse, then when this abuse, and home circumstances, contributed to my becoming severely phobic to the extent I did not leave my room for nearly a year I was then further abused by the National Health System I trusted to help me, when they gave me Deep Sleep Treatment in a old style mental health asylum when I was only 17 - 18 years old.

Beleve me the mental health hospitals, and the mental health service, around then in the Uk was VERY different form now - The mental Health service was vastly reformed in the 1980s but I was treated with deep Sleep treatment in an old style asylum in the 1960s/70 ....it was barbaric!!

Indeed deep sleep treatment that was later described as 'barbaric' and has been banned in most health services in the world.

My struggle to rehabilitate myself from both my phobic anxiety and the effects of having had this abusive Deep Sleep Treatment without any help as I was too scared to EVER trust the NHS again ( and my success at this ) And then at a time when I thought things were going so well and I had had my one and only child -Post Natal Illness - which I also got through with no help or support or indeed understanding really from anyone.

And now when I should be looking forward to a peaceful retirement with my husband - I find I have HIV!!

All theses events prompted me to act. And to do something constructive with what I had experienced and not to just accept! Acceptance is just not in my vocabulary! Acceptance was abused out of me when I had the sleep treatment!!

I became a teacher/youth worker because of the sexual abuse and the NHS abuse when they gave me that horrendous so called Sleep 'treatment' - and spent many years of my life trying to make a difference for troubled young people. In the hope that I could prevent at least one suffering as I had and to empower young people so they were NEVER as powerless as I had been

I started PNI ORG UK charity because I had had Post Natal Illness: http://www.pni.org.uk in the hope that I could make a difference to at least one woman and help someone not to suffer and feel so alone as I had

So I now have HIV - not sure exactly where I am going with this yet? - but I WILL be an activist - I will be public and I will at least try to make a difference

So I will never go quietly
I am raging against it and will always rage

What is PozFem?

http://www.poz-fem-uk.org

The PozFem Vision paper can be read here:
http://www.poz-fem-uk.org/docs/WomenHIVandSexualHealth.pdf

You can join PozFem yourself - and it would be lovely if others from the south west did - but also I can take anything you are concerned about or want to say about being woman living with HIV to the meeting.

If you want me to bring something up you can do his anonymously by posting it on here or emailing me and I will bring up what you want to say without mentioning in any way who you are.
Indeed if you write it here as a guest I not using you real name - I will not in fact know who you are myself!

Of course if you are happy to put your name to what you want to say - this is fine too!


PozFem UK is:

'the only national network of women living with HIV. It ewas established during Changing Tomorrow, the UK conference of people living with HIV, held in Leicester in September 2004. PozFem UK works through 20 HIV positive regional coordinators who are linked to regional groups around England, Northern Ireland, Scotland and Wales. The International Community of Women living with HIV/AIDS (ICW) and Positively Women provide technical support to PozFem UK. PozFem UK is an initiative that is funded by The Big Lottery Fund.'

It is a joint project between Positively Women and ICW - International Community of Women Living with HIV and Lottery Funded.

PozFem UK

• provides a support network particularly to women who are geographically isolated or in prison;
  
• keeps women informed of HIV, health and psycho-social issues;
• sensitises policy makers and service providers to the issues faced by women living with HIV;
  
• creates a link between experiences and challenges of women living with HIV, at local, national and global levels.
  
  

PozFem is worried about the lack of awareness of HIV in general and Women in particular in the UK
Also lack of understanding of the issues facing women Living with HIV/AIDs in the UK.

'The attention of the British public has
been focused for many years on people
living with HIV in less economically
developed countries, where people
living with HIV commonly experience a
gross lack of access to care, treatment
and support. Whilst this focus is valid
and necessary given the magnitude of
the impact of HIV in these countries, we
are concerned at the lack of
understanding of the issues facing
women living with HIV in the UK.

As PozFem UK members and women
living with HIV in different parts of the
country, we feel it is vital to sound a
number of alarm bells in relation to
sexual health and HIV, and the policies
and strategies which are guiding the
UK’s national response.

If you agree with us, please join or let me have your views and concerns so I can take them to the meeting.

Poz Fem - Bristol meeting 3rd to 5th October

It is not long now until the PozFem regional coordinators meeting.

And on the one hand I am really looking forward to it - on the other I am really scared!

I am aware that my diagnoses has not been long and that many of the women I will be meeting will have lived with HIV for a long time, and that I am still new to the issues, and in many ways still very ignorant.

Many of the women who will be at this meeting have been activists or involved in support work for some years and many have attended World Aids Conferences - some went to the one this year in Mexico - many others work for organizations such as Positively Women and ICW - International Community of Women living with HIV/AIDs etc.

And I do not work for anyone! I am just someone who was only diagnosed in January and while I did some HIV awareness work as a professional youth worker, this was years ago in the 90s and at a time I did not have HIV myself.

I think I may have been asked to be a PozFem regional coordinator because I am the only woman this far west (Cornwall) who has so far wanted to be involved - there are other South West regional coordinators in Exeter and Bristol I believe who have been involved for some time, but no one until me in Cornwall.

I am really looking forward to meeting theses women who have done so much to raise awareness............

But I think what I am scared of is being attacked or that my contribution is inappropriate or of anyone being angry or disapproving of me. I do have a difficulty with this in group settings anyway as I always expect or worry that I will be attacked and often have been as I am too loud, talk too much, too opinionated etc

I think I am coping surprisingly well with such a recent diagnosis of HIV and have traveled miles so far in trying to understand the issues and what it will mean for me as a person - but I have a long way yet to go.

Ironically perhaps one of the reasons I am coping reasonably well so far is because my life has never been plain sailing, simple or easy and because I have faced many issues before - difficult childhood, abuse, homelessness, drug use as a teenager, mental health, Post Natal Illness, coming to terms with physical disability etc

I think that had I always lived the more peaceful life i.e of wife and mum, married to the same man living in a nice home with a reasonable income that I have lived for the last few years since I recovered from Post Natal Illness, HIV would have been much harder to cope with and more of a shock!

One the one hand I did not ever expect to have HIV myself and I certainly did not expect my husband to have HIV and become so ill ( as he has always been such a fit man I expected him to outlive me easily) but on the other hand HIV is in some ways just another issue and one I have to deal with and use what I have learned in the past from other issues I have faced to deal with it.

But while left to myself I am dealing with it the one thing I have always needed in life is approval, especially for some reason approval from other women. It does not seem to matter to me as much if men do not approve of me, I have my man and as long as he approves and respect me this is enough!!

But approval and especially from women for some reason is a big part of my make up of what I need - and if not approval at least not disapproval. And at times in my working life especially needing this approval has got in the way of my doing a good job for those I represented or was an advocate for.

And I feel particularly vulnerable to disapproval right now, since I found I had HIV - which is why I think I reacted badly to my first consultant as she is female of similar age and intellectual/professional ability I was very/or over sensitive to being misunderstood and judged.

So I know that as long as I am not attacked at the meeting in Bristol I will be OK , but I fear that if I feel - rightly or wrongly - attacked, disapproved of, or judged I will make a fool of myself and cry - something I especially do not want to do at the PozFem meeting.

I want so much to be a productive and fitting representative there of women in Cornwall living with HIV and their needs as well as my own and not be seen as a victim who's diagnosis is too soon for me to do a good job of this.

They say on their website about their consultation document that I distributed in Cornwall:

• We hope it will serve as a useful advocacy tool for HIV positive women around the UK. We believe it is crucial to ensure that our experiences as HIV positive women inform policy, and we feel strongly that the issues we raise here are important and relevant for a range of policymakers, service providers, voluntary organisations and activists involved in gender equality, sexual health and HIV.

So I have tried to take in everything every woman I have met so far (or spoken to on the phone or on email) in Cornwall living with HIV has said about what is important to them and the issues they face and while I want to represent how it is for me I also understand that how it is for me is not how it is for others and do want to represent them well too.

I do not want to let them or me down!

Groups I have joined

I am involved in the following:

http://www.poz-fem-uk.org/index.html

Welcome to Pozfem UK online - The National Voice of Positive Women

PozFem UK is the only national network of women living with HIV.

It was established during Changing Tomorrow, the UK conference of people living with HIV, held in Leicester in September 2004. PozFem UK works through 20 HIV positive regional coordinators who are linked to regional groups around England, Northern Ireland, Scotland and Wales. The International Community of Women living with HIV/AIDS (ICW) and Positively Women provide technical support to PozFem UK. PozFem UK is an initiative that is funded by The Big Lottery Fund.

__________________________________________

I am also off to PozFem's regional meting on the 2rd to the 5th or October in Bristol

And I am really so looking forward to it

I think/hope it will be so very good for me to meet face to face women that are out about their HIV like me and doing their best to campaign for services for women with HIV nationally
_____________________________________________________

I am also a member of ICW - International Community of Women Living with HIV /AIDs
http://www.icw.org/


If anyone reading this wants to join me in both

Please do

We can only all try our best to fight for change and educate

If we die without doing this our HIV dies with us - and no one has learnt or achieved anything?!!!

Just my personal perspective

Cornwall Womens group - what I was trying to say

I think what I was trying to say below about the new group
Is I feel such a group is really worth while

But after thinking long and hard I feel if my presence in the group feels too 'risky' due to my going public about my HIV - for other members I am totally happy to withdraw from the group.

I have decided that I intend to say this a the next meeting as it is more important to me that if it is valuable this meeting happens - than I actually attend it.

________________________________________________________________

I acknowledge that we all have to find our own path through living with HIV

And I respect this absolutely and totally.

And know that however well we seem to be coping form the outside - this thing is a nightmare for all of us and a terrible thing to have to live with and through!!

Some of us may need not to tell anyone - and others - such as me for instance - may need to be very public and join activist groups etc

• I especially understand why those living with HIV who have young children or jobs that they value may feel especially that they need to keep their HIV status totally to themselves!! My daughter may now be 19 but it seems only yesterday that she was a baby !! and I know how much you feel you have to protect them!! So I RESPECT this so totally!!

I also was once a youth worker for Cornwall County Council for 14 years and before this another 12 in London - so I understand why a job may mean that you have the need no to be open about HIV - also I understand why relatives, the estate you live on or the area you live in, community, friends may make you feel you can not be at all open about HIV - and I respect this also.

• But I also feel that even women who are having to live keeping their HIV status to themselves in Cornwall may benefit from a peer support network where even just for a brief hour or so and in a safe place..............
• A place where we can all can be open!! a place where no one will judge and a place we can actually air openly our concerns, feelings and distresses - as distress goes hand in hand with HIV for most

_________________________________________________

But I accept


No one who attended the womans network knows me very well or trusts me at all - or each other as yet! - and trust will take much time.


- and as I have been 'out' about my HIV in the press and on this blog and belong to many HIV organisations in my own name and fully out about it.

I therefore understand that no one knows me and do not trust me and have no knowledge of how I have a long track record of being out about an issue indeed being an advocate for an issue and yet still being able to keep others confidences/confidence on the subject.

I do understand that my having gone public may mean that others may not want to be seen with me - as Cornwall is quite a small community

• However as I have lived in Cornwall for over 23 years , have relatives in Cornwall and many friends and acquaintances, few if any who have HIV and am often to be seen about in Cornwall in the company of many different people and also with those due to my work with Post Natal Illness as well as relatives friend and others who have NOTHING to do with either issue!!!

So actually even though I have gone public about my HIV, if someone was seen with me there would be no reason at all for anyone who knew either of us to make the assumption that they have HIV or Post natal illness for that matter.

So I do not think that my continuing to be public about my HIV, be involved in activism for HIV rights and issues and yet still attending a local HIV womans group are both not compatible?

But I am willing to withdraw from further meetings if the others would want me to? And at the next meeting I will ask if they do.

As I do no feel I can just creep away into the woodwork now!

The path I have chosen to take for the rest of my life regarding my now being HIV positive is to use my experience to raise awareness, to change attitudes etc if I can.

After all I am not alone in this .........................as those who founded such organizations as KPS or even THT, Positively women, Worlds Aids Day, International Community of Women living with HIV etc all must have similar motivations and my ambitions and my motivations are so much tinier than theirs?

- all I want is to help in setting set up specific peer and other support services in Cornwall, and raise awareness within Cornwall of HIV.

Another big reason being is that I have a 19 year old birth daughter and have had a foster children and I want to ensure that at that at the very least they and their friends have the knowledge available to keep them HIV free!!

Cornwall Womens network - First meeting has happend!

The group met and for a first one it was felt to be a good turnout for a first meeting.

We are meeting once a month at the KPS building in Truro and the next meeting is 23rd October 2008 at 11.30 to allow those with children to get back in time to collect them from school.

If anyone else would like to join us you would be very welcome and we would all love to see you.
________________________________________________

I considered not mentioning this at all - but I know as I already said that I would be happening that it would seem strange not to even mention it as I have make it very obvious how important it seems to me that we establish a network of women in Cornwall for MUTUAL/peer support.

I have considered it for a few days - since Thursday - and felt that as long as I only talk about in general and how I found it and stuck closely to what we agreed in the meeting

'That

• 'everything said, within the meeting is confidential to those who were there' and
• 'no one identifies in any way anyone who was there, to anyone else not present, by mentioning anything personal about others. i.e such as ages, circumstances, lifestyle, family and children'

Then it will be fine for me to just to say that the first meeting has taken place and my feelings now.

As this blog is about me and my journey and not anyone else or any else's journey through HIV.

So as long as I stick to the confidentiality guidelines above and did not in any way identify or bring anyone else into what I feel then this should be fine.

____________________________________________________

On the whole I felt it was positive - a beginning - and something if we do not try we will never know it will be of benefit.

Most areas of the country do now have at least one HIV Womens support group/network but Cornwall did not have up to now and I so hope that this turns out to be positive to others as well as myself.

I did not try to initiate his just for me at all.

Yes - I certainly did want and need peer support from other women living with HIV, especially when I was first diagnosed. And just assumed that there would be a womens mutual peer support group already set up!! But I found there was nothing and that in fact for at least 3 months after my diagnosis I lived in a vacuum when I did not talk to one other woman with HIV

- this was very painful and upsetting to me because I knew they had to exist in Cornwall but there seemed no way of getting in touch with them.

I would have much rather have just attended an existing group and tried to join in as best I could and give others support as well as receive it - but here was not one and while I certainly did not feel up to being involved in starting one in any way - but I basically felt I had no choice.

As I felt that if I felt so isolated and alone I just could not be the only one feeling like this!! And others may come after me and be diagnosed and find they are alone - so I just want a network to exist if they want to access it too.

I think it may be different if someone was first diagnosed in another part of the country where there were already support groups etc and then chose to move to Cornwall 'post diagnosis' knowing that there was no specific support for women with HIV - or even because HIV is so little recognized here and it was felt to be more anonymous and where no one will know or guess your status.

But I have lived here in Cornwall for well over 20 years have many friends and even relatives here and was diagnosed here and felt I needed local, specifically womens HIV peer support.

I do really think it is still possible to live in Cornwall as a woman with HIV and yet unless you want them to, that no one in your local community ever knows this and yet still come to this new womens network meetings at the KPS building?

Which after all is in an anonymous 'safe' building and nothing need go outside the room we have for any womans network meeting.


Anyway as to the meeting.

I felt the turn out was positive for a first meeting and that it is a start. Irene - KPS - counselor seemed to agree.

And some others gave their apologies and said they will try to come in the future.
The meeting went well in that we certainly had a lot to talk about which is a first step!!

If we had all sat around bored with nothing to say to each other - there truly would be no point whatsoever !!!!! -
But it was not like that.

If nothing else we have a lot of views to exchange - and that can only be good?

Cornwall Women's HIV Network - first meeting

I wanted to let anyone know who is interested

That the first meeting of the proposed Cornwall Women's HIV Network is next Thursday 18th September at 1.30 at the KPS Resource center in Truro, Cornwall.

If you do not know where that is and want to come to the meeting just email me for the address on
veritee@veritee.net

I do hope some of you from Cornwall will come?

I am worried that you may not as I have had some feedback that some women living with HIV in Cornwall may not come along because they are not altogether happy with me!

i.e They are worried about how open I have been about my HIV status and that if they were seen with me 'out and about' in Cornwall, as I have gone public i.e in the newspaper and in a magazine......That this would in essence 'out' them too .

I truly understand as much as is possible to understand another situation and I also understand what a small community Cornwall is. Everyone knows everyone else and it is pretty impossible o keep things secret. If it gets known - everyone knows!!!

Perhaps had I had the opportunity to speak to women in Cornwall Living with HIV I may not have gone so public with my own story and may have understood and taken on board the views and concerns of other women in the county living with HIV?

But unfortunately when I was diagnosed in January I was absolutely desperate to make contact with other women living with HIV who lived in Cornwall. But I was not able to speak face to face to any other woman living with HIV in this county or anywhere for at least 3 months and to his day I have only spoken face to face with three other women

• One woman I met briefly at a meeting
• One woman who does not live in Cornwall but at least 100 miles away but who very kindly visited me and had dinner with us ( thank you your visit really helped us both - Barry and me)
• Lesley who is helping to initiate this women's network with me

However I only met all three some weeks and in some cases many months after I had discovered I had HIV and sometime after I had already gone to the press/media with my story ( they published it some time later not at the time.

So I do understand theses concerns BUT I really beleve that it is possible for women living with HIV in Cornwall to join the network and it not compromise their anonymity despite my going to he press - I am not important I am only one woman.

So I can only apologize if my going to the media has made anyone feel they can not attend the women's network at KPS. If it was not the right thing to do I am truly sorry but it is too late to change it now

However what I want to say is:

• The Women's KPS network is not being facilitated by me but by the KPS counselor Irene Alford
• I may have initiated this network to start because I needed peer support with other women in the county living with HIV and when I looked for it I found it just was not there - but - My status in the group/network is only one of participant just like everyone else
• If anyone does not want to be seen with me in particular or to relate to me in any way in the future I respect this - and you need not - What I am hoping is enough women will come along so you all have a choice as to who you contact and who you relate to among women living with HIV in Cornwall.
• Obviously just because we all have HIV we are not all going to get along we are vastly different age groups and life styles etc - So the reason for calling this a HIV Women's network and not a HIV Women's Group is so you can all choose who you contact or spend time with , if you contact or spend time with anyone at all?

Please consider giving it a go and come along on Thursday 18th September 2008

If we do not try - we will never know if it will be helpful to us

Veritee XX