UK Issues

[Veritee]

I am trying to get into the National UK  press to discuss these issues

Let me know what you think?

Maybe it is my way of blocking off to the realities of my HIV or a sort of denial? But I don't think so.

I have always - long before I had HIV - worked in advocacy work, as a youth worker and latterly I run a charity that is involved in advocacy and raising awareness of another issue

So now I have HIV - and before as I did HIV awareness work with young people - it seems natural for me to try to get issues around HIV on the public agenda as much as I possibly can.

What is important to me is to try to get some changes happening in the UK re HIV for all

I came to have HIV quite late in life, 55, and the services for those with HIV the attitudes still- and in the medical profession too, how it is stigmatized etc etc have been quite a shock to me.

To that end I am a volunteer for a local HIV charity, and trying to start a local HIV Woman's network and also trying to get some of the issues as I see them in the Media i.e :

1/. Routine Testing for HIV just like other routine testing when you go to your GP, such as for diabetes, thyroid, blood tests for other infections, cervical cancer, breast cancer, prostrate cancer, liver function, hormone function etc.

Either as a regular test every few years or one that is give when you are unwell and have maybe a full blood count and other tests, that HIV testing is included as routine screening to see what is wrong

I do not see why HIV continues to be treated differently from other illnesses by even GPs

For example -  cervical cancer is an almost entirely sexually transmitted condition caused by the HPV virus yet we have had routine smear tests for women in the UK at their GPs surgery - and without stigma - for many years

Also with modern HIV meds the sooner you know you are HIV the sooner you are treated and the longer your life and health is likely to be

My husband nearly died because there is no routine testing for HIV and currently in the UK you have to ask for a test.  

That you can in fact be very ill with HIV and unless you request a HIV test you may never know you have HIV. And that some may even be dying of this as on their death certificates, i.e death may be attributed to secondary infections like pneumonia or the range of cancers untreated HIV people are particularly prone to and not HIV!

We did not suspect we had HIV as he was unaware and did not realise he had taken any risk, and I did not know about the risk he took

So neither ever suspected we may have HIV -  so we did not ask for the HIV test until it was almost too late and so my husband got AIDs.

I wonder if we had not eventually asked my husband would have died of AIDs related infections  without ever knowing he had HIV???

If we had known and got the HIV medication early enough both our health would now be a lot better. And with modern medication you may never develop AIDs.

But without HIV medication, as you will all know here,  everyone with HIV develops AIDs eventually and without treatment dies. If you get treatment late and not within the first few years of infection, your life expectation will be compromised and your quality of life, as I believe my husbands has been and to a lesser extent my own!!!

I want to tell the story because I wanted to make the point to the public and hopefully to the medical profession that routine testing was not done and should be and this should be something that is put onto the public agenda and started to be considered!!!

2./ Support and services designed specificlay for women with HIV.

In the UK currently there is only one active support group for HIV women, Positively Women : http://www.positivelywomen.org.uk/  but this is based in London and many just can not access their services. I live a 5 hour car drive from Londion myself and can only access their services by phone or email and can not take advantage of their support groups., specialist support by women living with HIV etc.

Women have very specific health and persona issues - many around childbirth and children -and in the UK women are now the majority of newly diagnosed people with HIV.  Yet in the UK most HIV charities and help organsat ions are very male orientated, With peer groups for me or all sexual orientations but none for women
If you live in the UK - write to your MP
and the Prime Minister

3./ Should HIV ever be treated in a GU clinic?

I do not think it is treated in GU clinics in every part of the UK, but it is in Cornwall. If you can travel to bigger towns Plymouth, Exeter, Bristol, London you may be treated elsewhere in more appropriate surroundings and with complimentary medicine and therapies and counselling offered as routine by the clinic itself.

It is not in Cornwall. KPS, our local HIV/AIDs charity does offer counselling etc but not the NHS . If you can afford to go privately you may get this but not if you can not. 

I personally think this is so very inappropriate.
•      All other sexually transmitted diseases are curable or at the least not life threatening theses days.
•      HIV is life threatening and affects your whole life and your whole body
•      HIV does not affect the genitals at all in most people
•      The only similarity of HIV to other STDs is it is transmitted often sexually

People with other STDs will only go to a GU clinic for a week or two – if you have HIV you will be going there for the rest of your life!!!

The very sub standard and limited facilities offered in a GU clinic are not suitable for people with a life threatening and lifetime illness for which they will have to be on medication for the rest of their lives

I, and others with HIV, could be still sitting in that GU waiting room regularly at 80 years old – this is not appropriate.

And as the HIV  medication that can often have both short and long term side effects which can also be life changing or life threatening, and precribing HIV meds and other therapies can be very complicated and specific,  we need a one stop center devoted to HIV only

4./ In Cornwall I would like to see something like a one stop (  Mermaid ) centre for people with HIV

- The Mermaid center is the sort of center we have in the UK for women with breast Cancer - and this is what ours is called in Cornwall  -

I envisage a specialist HIV center to be based on the Mermaid center model -  a one stop center - run and fundied by the National Health Service and charity funding so that no one pays at the point of treatment-  in its own building and own close car parking, but in the grounds of a major hospital so in - patients can have surgery in the hospital but go back to their comfortable single room at the center afterwards or their 4 bedded room if they prefer.
It has great faculties such as a modern airy and well designed feel. Family rooms and TV and sitting rooms and a cafe. 

With inpatient wards that consist of mostly single rooms but 4 bedded areas for those who prefer company. all with bedside phones, TV facilities to use PCs etc and to make hot drinks nearby, out patients consulting rooms etc, fitness center with a gym and fitness experts and psychotherapists on hand to help. With pharmacist advice,  alternative therapy, complimentary medicine and counselling rooms and practitioners availbale

I know all this is may be impossible for HIV but I can have my hope and this to aim for

Veritee XX

[nottsnicola]

Hi Veritee,

Sorry it is a long time since you posted this message for me to reply but I am a long time "lurker" on this forum and I have not logged on for some time. I have just logged on and read your message and felt I have to reply as I am a woman living with HIV in the UK.

I was diagnosed with HIV in 2002 with a CD4 count of 10 - as you can imagine, I was pretty ill, almost dead in fact. As I got better, I got involved with a UK HIV charity who gave me training and volunteering opportunities and I am now (5 years from diagnosis) back at work as a housing support worker, for people with HIV.

I'd like to respond to your points.

1. Yes , I totally agree. GPs should routinely offer tests for HIV. I am categorised, like it or not, as a "white, middle class woman", who my GP wrongly assumed could not possibly, ever, be at risk of HIV. Despite attending my GP endless times with what I now know to be opportunistic infections - shingles, oral thrush, stomach infections - still the GP did not offer an HIV test. I had to force one on them... and it was positive. By which time my CD4 count was 10. The lovely and wonderful HIV consultant who has treated me since said to me "you were lucky not to die". Thanks GP... for nothing.

2. As a support worker, I work with several HIV+ women with children, including one who has just given birth to a baby, a beautiful healthy little boy, and she is terrified he will be positive too, even though she has followed all medical instructions to prevent transmission. I have done everything I can to try to alleviate her fear but I wish there was some local organisation that could give her more help but there is no organisation locally that can help. I wish I could be more help to her and I wish I could refer her to a local women's HIV group but none exists.

3. Interesting point about GU. I Live in Nottingham - 2/3 of people with HIV are treated in GU, 1/3 in Infectious Diseases. Which do you prefer? There are advantages and disadvantages to both. GU is an STI clinic but all patients are identified by number only. In ID, you are part of outpatients, they call your full name in front of people for other clinics. But at least you have a choice. ID or GU. I go to ID and feel no problems. For me, it's all about my consultant - I admire and respect him and he does so for me equally. I don't care where I'm treated but I agree, you should have a choice and also, if you are not happy with your consultant, you should be able to change.

4. Absolutely agree Veritee - one stop shop. For you in Cornwall and for us in Nottingham. Lets fight for them.


Hey Veritee, sounds like we have a lot in common. Your arguments are great - you are a fighter. My first year of diagnosis in 2002 I just wanted to die and well I could have. Then I started to fight and live. I clawed my way back from nothing to where I am now. Now I do my job to support others with HIV. I do that because I had help from HIV activists along the way. So you are NOT in denial, you CAN change things, absolutely yes. Please send me a private message if you want to talk some more.

If any of our American friends read this, please note that the UK still has a long way to go and many battles to fight. HIV is now ignored and us positives just don't exist. But love and good health to you all.

Nicola.

[Veritee]

Dear Nicola

How lovely to hear from you. I am so sorry to hear that like my husband you were so ill before being diagnosed but that you are much better now and working to support others who have HIV. As you see form my posts this is also the direction I am now taking..

Fortunately for me when we found that my husband had HIV/AIDs in January due to us not suspecting - nor his GP - that over a year of ill health was HIV, my health although beginning to suffer as not so bad as his - . However I did not feel great either - I did have some of the illnesses/symptoms that you had and also stomach problems, but my husband had far more - and had tests that came up with nothing as no HIV test was given or even suggested, but my CD4s got close but did not go below 200, however like yours my husbands were just 9 and he spent some time in hospital with PCP and it was a terrible time because I really feared he would not survive.

However we are both now on ARVs and doing reasonable well and hope to do even better as time goes on.

I was very interested in your comments and wondered if you knew about the Public Consultation Document that has been written by an organisation to represent women with HIV in the UK  called PozFem?

I have recently become a regional coordinator for PozFem for my area - Cornwall

They have published the document both in a printed leaflet and online, and as you work as a housing support worker for those with HIV, which I am at resent distributing in my area of the country.

If you do not already have some I could ask if we can send your charity or organisation some hard copies  or you can view it online as a PDF at http://www.poz-fem-uk.org/reports.html

It would be very interesting to get your comments on what is said in the document and the comments of other colleges working with women with HIV or those with HIV in your area.

What I said above however was my own personal perspective on what needs to be looked at although some of it is also covered in the consultation document. But I was not part of writing the consultation document as I joined after it had been finished, but it makes some good points and I agree with what is said.

As to your points - thank you for making them in response I wanted to say:

1. that our experience about being diagnosed pretty much mirrored your own, hence my campaign and belief in routine or 'opt out' testing for all. As due to the lack of knowledge on the part of our GP and the whole practice in fact we were not diagnosed until I actually ASKED for a HIV test for my husband, because while I did not want to believe it when I looked at my husband I began to think he had HIV.

We are also categorised as middle class white etc and therefore not seen as a risk of HIV ( actually we are both gypsy origin and do not see ourselves as middle class, white etc but they do)

I asked for the test as I had known people with AIDs back in the mid 80s in London and also worked as a youth worker in the 90s and was employed for a time  to do HIV awareness with heterosexual young people, and worked with those with HIV and some were not well. So as this was before the wonderful drugs you get theses days I had met those in the 80s and 90s who were very ill due to HIV. I looked at my husband and thought one day - he has AIDs!!!! I suddenly realised he looked like men I had known in the past and had similar symptoms.

I kept thinking I had to be wrong as surely if this was so the GP woud have picked it up? But I went with my husband to the doctor next time he went and requested, or rather demanded, he give my husband an HIV test. The GP reacted as if I was being somehow hysterical or suffering some sort of OCD about my husbands health and told me it was not necessary. But we said do it anyway, and the rest is history.

I do wonder if my husband would be alive now had I not asked for that test?

2. As to women with HIV and children. I, alongside the only HIV support charity in Cornwall KPS: http://www.kernowps.co.uk/ are trying to start a woman’s support group. But our difficulties are that we consistently fail to get women with HIV in Cornwall and especially those with children to even talk to us? We do know that they exist as we have the rough numbers from the HIV consultants and they tell the charity that they exist, and also KPS employs a woman counsellor and while she is not HIV+ she understands the issues and she is the only person who has seen many face to face. She can tell  us therefore that they exist but not any details and the charity can only offer, due to funding,  normally up to 6 counselling sessions to each person with HIV - and this is usually accessed on diagnosis by women if at all.

Obviously both her and the consultants are tied to confidentiality but they are able to tell us that practically all the women they meet with HIV, and especially those with children are too scared of the implications of disclosure in this small rural area. i.e. with attitudes of people they know, worries about how their children would be treated at school,  if they work worried about their employers and those they work with -  to tell anyone that they are HIV That most have not told even their closest friends and family, just their medical professional and a few have accessed the one to one counselling in secret.

It seems they are even too worried to talk to other women like me who have HIV! And actually they may be MORE worried!! Because I am out about it and it seems the fear may be is that I will disclose their status either because I do not understand why they do not wish to disclose to anyone and will not keep confidentiality ( which of course I would) or they would be ‘outed’ by association. That to be seen with those who are out about their HIV their status may be revealed. I am told that therefore many have absolutely no support in general for what they are going through and for HIV + issues and certainly no peer support.

And this I believe is so as even though I am a woman with HIV and have tired to contact other women with HIV, I have so far only spoken face to face with one women in the county with HIV - and anther from Bristol which is over 3 hours away. The person I have met form my country is a woman a little older than me -  I am 55 -  and semi retired like me , with no job to worry about and no younger children, or children’s schools, so she feels able to relate to me at least as another woman with HIV as she has like me no one else to protect, so we occasionally meet up. However even she is not out in general with anyone in the community or with all her family or friends.

So in starting the woman’s peer support group we ( KPS Charity)  are trying to assure women with HIV in Cornwall that if we meet face to face it will be done in a neutral venue, but that if this feels to risky we are happy to 'meet' only by telephone and or online, that, complete confidentiality will be maintained and  no one will 'out' them by even by association.
We now have funding for this network/group and I just so hope we can get it started.
As I have a lot of support from my friends, family my community and those I have met through volunteering at the KPS charity - they are male. So I can not imagine how a woman with HIV would feel, or manage,  in this  rural and often isolated community even if you do not have HIV,  if she had told no one but her doctors?

2. I was very interested when you said that one of the advantages of being seen at a GU is that you are identified by a clinic number only?

As in fact at our GU this is not at all what happens! We do have a clinic number of course but when we are called we are always called by our names.
When we first went there and they did not know us they used our full names, now they call us by our first names.

And in any correspondence by our names etc
I do not know if this is generally so for those who are attending the routine SDI clinics, but it certainly is for both me and my husband and when I have been in the waiting room with others I know through the charity I volunteer for to have HIV, they are called by their names too?

In our GU HIV people are seen while the routine SDI clinics are going on but we are not actually part of those clinics.

So we sit in the waiting room during either male or female clinics but we have specific appointment times while others do not always  - therefore I can find myself sitting in a very small cramped waiting room with all men and me the only woman and my husband visa versa, and they always call us by our names loudly and in full hearing of anyone in the waiting room and seem to do the same for everyone with HIV at least?

It is not even in what is a ‘proper’ building in the main hospital, but a pre-fab hut tucked away right at the back of the hospital grounds.
 ( this is not good for anonymity as there is no where else in that area for patients so if you go that way you MUST be going to GU, or what my daughter calls the ‘sex clinic’ and there is a big sign on the way pointing to the clinic and a sign outside, so really it is less anonymous than outpatients as if you go their you can only be going for an STI or HIV)
 

Like you I do not worry about this as I have decided to treat HIV just like any other illness and not be more ashamed of it than I would if I had cancer or whatever, and it is the treatment that is important. However given the way I know many women with HIV feel in this county - Cornwall -  it must be a problem for many? I wonder if they made the decision as a clinic to use our first names  for those us us who would be 'regulars' at the clinic as we have HIV rather than just popping in for SDI screening and then wither never coming back or having a course of antibiotics and never coming back? I will have to ask the clinic.

I have actually now changed my consultant thankfully to someone I get on with well

So at least in Cornwall the anonymity advantage of being treated a GU clinic does not in fact exist, and I feel that there is no other reason for HIV to be treated at a GU clinic nor any advantage and for me it SHOULD be treated as any illness which can be lifelong and life threatening .

So I think on balance I would rather be treated at outpatients by ID. And in fact highly object to my treatment being at the GU – and can see no advantage in being treated there and lots of disadvantages

I could go on but I have gone on too much I think - sorry - but as I said I have as yet had really so few opportunities to talk at all at any length with women in the UK, even online, who have HIV.

 While I belong to the PozFem regional coordinators group, this is mostly a working/business group and not to discuss experiences  how we feel or subjective opinions. We will be able to do that when we meet in Bristol in October, however many of the women in this group have been diagnosed for some years and perhaps - my assumption only - do not have the process of thinking and discussing HIV and coming to terms with it,  to do that I have yet to go through.

I totally agree that we have much in common. I will PM you, but thought I would respond to your comments about the issues I raised publicly here first

I agree with what you said so much:

If any of our American friends read this, please note that the UK still has a long way to go and many battles to fight. HIV is now ignored and us positives just don't exist.

This is so totally what I have found, and unfortunately I have found that in my county of the UK 'us positives'  do not even exist even for each other - well this is especially so for women and heterosexual people in general. I have thankfully met a few - about 3 -  positive men both hetero and gay, through the KPS charity but only as yet one woman.

It is a very isolating position to be in, and while I understand why this may be so and why others here can not even talk to others with HIV, I feel that it has to be so they are suffering from this isolation also. My hope is that if I speak out, it may help others to do so or at least others in the future who come after us to at least feel able to talk to each other if not to their friends and children, families and their communities.

Thank you so much for responding to my post

Veritee