Jamie’s Story

Friday, March 25th, 2016

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personal-stories-men

Jamie

 

Watch Jamie talk about his story

 

It was November 2014, and the Terrence Higgins Trust were doing a drive on Facebook for home testing kits for HIV. I’ve always practised safe sex, but like to get tested every 6 months, because accidents happen. Very soon it became all too evident that an accident had happened. I got a call late on a Monday night telling me there had been ‘a detection’ and I needed to go for a confirmatory test.

I went to my local clinic, but when it came to the test it’s all a bit blurry. All I remember is that I never saw that dot appear… that dot that would result in some major hurdles and challenges in my life. I didn’t see it because the last thing I saw before tears blurred my vision was the doctor looking up at me with an expression that said it all. I fell to pieces.

That night I called a close friend and told her. She reminded me that my father would always be my greatest supporter and that parents want to be able to worry about their kids, so I phoned my dad next. He remained true to form as an amazingly supportive father!

That weekend I attended a workshop for the recently diagnosed at Positively UK. I entered the workshop an emotional wreck and left full of optimism and lust for life. In the New Year I started treatment. I had not been receiving the best treatment at my clinic, and as Positively UK had explained, I was in charge of my treatment, so I moved my treatment to a clinic in London. Due to my lifestyle and career there were only a few options open to me. So my doctor had to go to the virtual clinic, a counsel of doctors, to put my case forward to get authorisation to give me the treatment I wanted. I got permission, but on that same day a new drug became available in the UK that had great results in Europe, so I took it.

Treatment brought few side effects; some mild tiredness and nausea if I took it without food. It’s all about planning. In just over 3 weeks I was undetectable. I felt free; my fears of transmitting were gone – My fear of dating and disclosing not so much so. I dreaded having to disclose my status to people and what their reactions would be. It wasn’t long however until I found my resilience and realised, I’m a romantic… and if someone loves me, they’ll want me ‘warts’ and all. I realised I didn’t want to limit my window of partners to just positive guys, someone amazing might be negative and love me how I am.

I’ve been on quite a few dates since then and found that it’s not much different than before. I’m ready to discuss my status when it’s time and if they can’t handle it, it wasn’t meant to be. I’ve been positive since November 2014 and I can tell you that my life has never been so ‘positive’. I’ve got an amazing support system which has resulted in amazing friendships and ultimately I am lucky, in that I can say my HIV hasn’t affected my life in a negative way. I’m alive, I’m happy and I’m too stubborn to quit!


Ismael’s Story

Thursday, March 24th, 2016

Ismael

Hi I’m Ismael, and I’ve been HIV positive since 2013. I had the news when I was doing my twice yearly routine blood test. I didn’t know what HIV meant at that time. So I had to learn what´s that? And how to deal with it. Not a big deal, but definitely something really new for me. I’d never heard about it, and nobody had talked to me about it before.

In my case the first people I told were my flatmates, and my closest friends. I didn’t tell anyone from my family because I didn’t want to worry them then – that’s the last thing I wanted for them or for myself.

My life didn’t change at all. I just had to take the medication to keep the virus quiet in my body and obviously look after myself better – such as making nice meals, practicing more sport, resting properly, and having good habits in general. These are things that I was doing already, so there wasn’t much to change to my routine.

Then, came the moment to choose the right medication for me. In my case I’m taking Kivexa and Sustiva once a day, before I go to bed, because probably it helps me fall asleep and if I’m going to feel a bit dizzy, it’s better to take it before sleeping. It’s good take them around the same time every night.

Also, I’m going to mention all the support I got from Positively UK. I could say some names, but I won’t for professional and personal reasons. But I really appreciated it. Since I started to enjoy the Gay Talk group, I’m stronger and even more open minded about the HIV.

If I say the word: Sex, don’t be scared AT ALL. The gay community knows about HIV very well, and most of them are not afraid to have good sex with people with HIV. What I do, if I see like I’m going to have sex with someone, I feel free to say, I’m HIV positive. I prefer be honest from the start so as not to have surprises later or maybe make the other person uncomfortable. Also, not far from this point, if your condom breaks and you think you might have had exposure to the virus, you can go to the hospital – even after two or three days – and get something called PEP which you take for 28 – 30 days: it will destroy the virus in your body.

At the beginning I had my bloods taken every three months, but once the results were going well, then I started to have bloods taken every 6 months together with 6 months’ supply of medication. That helps a lot. It makes it possible to travel.

So, yes, yes, yes!! Life is still beautiful with or without HIV. And now also, I’m planning to move abroad, so new adventures are coming for sure and I’m really up for that.

What I have learnt from all this is to be HAPPY always.

Never give up and always SMILE


Roland’s Story

Wednesday, March 23rd, 2016

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Roland

 

Watch Roland talk about his story

 

I was given my diagnosis on 1 September 2006. My partner had to give me the diagnosis. I was given two weeks to live. I was HIV+. I had AIDS. My AIDS-defining illness was Progressive Multi-focal Leukoencephalytis, a brain disease.

The first person I told was my partner’s closest friend. I wanted him to have somebody around him who would know in case something happened to me. She was fine. She was informed. She reassured me that she would make sure my partner was OK. I told my partner that I had told her.

I had no choice about starting treatment. As my carer, initially my partner had to make sure I took the right medication at the right time. It was a struggle at first, but now it is almost second nature. I’m on my 7th regime, due to side effects of the other six. I’ve now been on this one for almost three years and, most of the time, it seems to be going fine. I have been undetectable and with a CD4 count hovering around 600 for about 18 months. Something to be grateful for!

Being diagnosed has had a big impact – a positive (no pun!) impact. I do a fair amount of voluntary work in the HIV sector and I became Chair of the Disability Staff network at work. It has given me something useful and constructive to do and it has brought me into contact with so many wonderful, inspirational people, that I would never have come across before. So I am grateful.
I have had brilliant medical support. And support from organisations such as Positively UK, Terrence Higgins Trust, National Long Term Survivors’ Group, and others. And support from other HIV+ individuals along the way. From friends. And, most of all, from my partner. He has stuck with it, somehow. And for that too, I am grateful.

The things I am less grateful for? The dentist who refused to treat me; the ping-ponging backwards and forwards between my HIV specialist and GP; the knee-jerk reaction from the administration at work who suggested very strongly that I should take early retirement on medical grounds when I disclosed my status to them; the aches and the pains (but hey, I’m not getting any younger!); the sudden overwhelmingness of it all that still… occasionally… hits me.

But these things are minor, very minor, in return for still being alive. And still being grateful.


Stop HIV Cuts

Friday, March 18th, 2016

Positively UK are proud to be a part of the #StopHIVCuts campaign!

Stop HIV Cuts is a national campaign which aims to convince local and national government of the importance of HIV support services, and the need to commission them effectively and fund them adequately.

We are joined by a group of HIV organisations, service providers and community groups committed to ensuring the needs of people with HIV across the UK are comprehensively met and that the best possible results are achieved for physical health, mental health and social inclusion. We all believe that it is essential that HIV support services remain in place and are properly funded.

Nowhere in the country should be without access to high quality HIV support services for those who need them. This campaign in not arguing in any local area for any particular contract or any particular provider. It is arguing for a set of services and the vitally important outcomes they have been demonstrated to achieve.

 

Public Heath England’s Positive Voices survey found that over a third of people with HIV accessed HIV support services over a 12 month period. With over 100,000 people living with HIV in the UK, HIV support services are needed now more than ever.

HIV support services, often provided by voluntary sector organisations, provide much needed care for people with HIV around, for example, coping with a new HIV diagnosis, stigma and disclosure, safer sex, adherence to HIV treatment, mental health, social isolation, and wider social needs. They prevent serious ill-health, onward HIV transmission and severe social care need, so saving public money in the long term. Funding HIV support services should not be at the expense of HIV prevention and HIV testing. HIV support, HIV prevention, HIV testing all need adequate funding if we are to respond effectively to this serious epidemic.

Yet 2015 saw the start of a worrying trend of local authorities across the country totally defunding HIV support services. In Oxfordshire, Bromley, Norfolk, Portsmouth, Slough, Bracknell Forest and Bexley, the local councils are set to scrap this essential provision. Other councils threaten to cut funding to the point where meaningful provision is impossible.

These funding cuts are short-sighted and ill-thought through as they will ultimately lead to extra pressures on health and social care as people with HIV fall into acute need and crisis, as well as significant costs to the NHS from an increase in onward HIV transmission.

We are calling on as many organisations and individuals as possible to get behind our campaign to Support People with HIV: Stop the Cuts.

Get Involved!

Join us in writing to your local council leader making the case for HIV support services and asking what the council’s plans are for these services.

Email your local council leader now


Creative Writing, Drama and Poetry Workshops

Friday, January 8th, 2016

Women hold a wealth of knowledge through their experiences of living with HIV

However, there are few opportunities to hear stories from women about living with HIV and getting older

Come and explore exciting ways of sharing experiences and hearing others’

 

 

You will:

  • Have fun in a safe and welcoming space
  • Be part of a diverse group of women and a shared experience
  • Gain new skills and develop your talents
  • No experience necessary

Come along to our twice a month creative workshops at Positively UK, where we will be exploring new ways of sharing and discussing our diverse experiences of being women.

 

These workshops are open to women living with HIV of ALL ages

 

Place:

345 City Road, EC1V 1LR
it is a safe and supportive space

Dates:

28th January, 11th February, 25th February, 10th March,
17th March, 14th April, 28th April

Time:

6:00pm – 8:00pm

 

Who is involved:

Kat is a community theatre maker and lecturer at the Royal Central School of Speech and Drama. She works collaboratively with community-based organisations to use creative ways to explore understandings of sex, sexuality and sexual health, using many different art forms.

Silvia is a woman living with HIV. She works at Positively UK as Deputy CEO leading on the policy and involvement work, ensuring people living with HIV are involved in decision making. Since 2004 she has been openly living with HIV because she believes it is a powerful way to challenge stigma against people with HIV.

Shema is an HIV specialist doctor and researcher at UCL whose main interest over the past ten years has been the health of women living with HIV. She is currently leading a nationwide research study (the PRIME Study) looking at menopause in women living with HIV.

Matilda has been involved with Positively UK for many years and has been a Trustee since 2013. She holds a BA in Drama, Applied Theatre and Education and an MA in Drama and Movement Therapy both at the Royal Central School of Speech and Drama and currently works as Freelance Drama therapist and HIV Youth consultant.

Helen is a woman living with HIV. She works at Positively UK as Women’s’ Project coordinator. Since 2002, Helen has been a dedicated promoter and advocate for integrated, culturally sensitive care and support for ensuring people living with HIV as well as empowering them in coping with their HIV diagnosis, treatment and adherence.


Women PrEPare

Thursday, December 17th, 2015

Key findings in the report are:

  • Healthcare providers need to recognise all the factors that may affect access and adherence to medication; they should discuss the importance of adherence with women, refer women to peer support, and seek ways to help women take medication successfully.
  • Women want and need access to comprehensive and accurate information about the effectiveness of different types of treatment and prevention methods.
  • Women’s idea of “good HIV prevention” is something long-lasting, quick-acting, discreet and undetectable, that has few side effects and, importantly, does not interfere with sexual pleasure.
  • PrEP enables women to share the responsibility of HIV prevention with their partner(s). Women living with HIV do not want to be solely responsible for preventing transmission to their partners – shared responsibility is important.
  • Women do not know enough about PrEP or how it works. The majority of clinical research and advocacy has centred on gay men, and this lack of involvement in research has led to poor awareness and low engagement with PrEP activism.
  • Women only spaces and strong support networks and are vital in enabling women through effective management of HIV treatment and prevention.
  • Peer support is especially important, as it has a proven track record in helping people better understand and manage their HIV, as well as help them to talk about their HIV to others.

A new report looking at the findings and evaluation of the Women PrEPare workshop that took place in London in July 2015, bringing together 30 women living with HIV from around the UK to look at HIV treatment and its use in prevention and how it specifically affects women.

Women PrEPare came about following the findings from Positively UK women’s conference Women Know Best, which included a recommendation to community based organisations to: “provide opportunities for women to develop and improve treatment literacy and treatment advocacy skills, and emphasise the benefits of participating in medical and social research.”

The workshop, held at Positively UK’s head office in London, was supported by a small grant from AVAC – Global Advocacy for HIV Prevention. It was an exciting day of learning and discussion around HIV, antiretroviral drugs, and new prevention technologies such as Pre-Exposure Profilixis (PrEP), Treatment as Prevention (TasP), and microbicides.

The main aims of the day were:

  • to improve women’s understanding of HIV, ARVs, and new prevention technologies including TasP, PrEP and microbicides
  • to stimulate discussion around, and to identify, the role that new prevention technologies can play for women living with HIV in the UK
  • to increase women’s confidence and skills in advocating for and influencing the access to treatment and prevention agenda

The content and direction of the day was designed by a steering group of women living with HIV.

 

You can view and save the report as a PDF here.


Solidarity in support of gay and bisexual men

Monday, December 14th, 2015

If you’re living with HIV, some of the best people to talk to are other people living with the virus. Jim Fielder, Positively UK’s Gay Men’s Support Worker talks about the value of mentoring and how this is helping gay and bisexual men living with HIV in London

With 1 in 11 gay men in London living with HIV, we probably all know someone in our social circle living with the virus. But do we know who they are and have we ever talked about it with them? The answer to that, I suspect, would be far less definitive. The invisibility of HIV still reaches deep into society and into our own community. The impact this has on the rising numbers of us that are testing positive leaves many feeling unable to talk about it with our friends and loved ones and unable to find safe spaces to explore what it means to be living with HIV in 2015.

Positively UK has been providing peer mentoring support since 1987. I’ve been running the organisation’s first dedicated gay and bisexual men’s programme since May, thanks to three years of funding from the Big Lottery. Like all our frontline staff and mentors, I’m living with HIV myself (nearly two years and counting) so I have insight into what the guys who rock up at our door are going through. Having lived through an HIV diagnosis ourselves is the essence of our approach. As one of our service users has said: “would you want swimming lessons from someone that can’t swim? Or would you prefer to talk with someone who has done the walk?”

At the heart of what we do, therefore, is training up volunteers living with HIV to provide mentoring support. Clinics and hospitals are often too busy to do much more than get people tested and onto treatment, so our growing network of peer mentors provide the practical, emotional and social support that people often need following a diagnosis. We do this in two main ways; providing one-to-one talking support over a number of sessions, and then bringing people together in our Recently Diagnosed weekend workshops and at our Gay Talk Saturday group and social events.

Gay Talk in particular is popular and well attended because it provides that safe space for the guys to meet, to share and connect – and not just around our HIV. We understand that HIV is only one part of our lives and although it can feel like taking over for a while after a diagnosis, it doesn’t define who we are. That’s why we talk about people ‘living with HIV’ rather than ‘being HIV positive’. We believe there’s a difference. I try to think of the guys walking into our groups as men first and foremost, then gay or bi men and finally as men living with HIV. This helps us to see the layers of experience and issues that the guys bring to us and how these interconnect.

This is important because an HIV diagnosis rarely happens in isolation, instead happening within a context or set of circumstances – that may be a relationship breakdown, difficulties around chemsex, problems with work or housing, challenges around accepting sexuality. Some of these issues and their underlying causes may have lain dormant or been building for years, suddenly erupting to the surface following a positive HIV test. We might need to support a recently qualified foreign student who’s visa is about to run out and he can’t face returning home for fear of HIV related discrimination and violence; or an older man diagnosed for many years, who’s long term partner has died and he’s losing their home; or a young guy who’s just moved to the big city and quickly gets himself in too deep with the chems. As gay men who may have grown up in a suffocating environment, we rightly love the freedom and the anonymity that London provides, but the city can be an unforgiving place when we hit the skids.

At Positively UK we’ve been there, so we can help you navigate through the complexities of the day to day aspects of living with HIV; whether that’s accepting a new diagnosis, help with treatment and drug adherence, sex and relationships or disclosure and talking about HIV. Most importantly we are a listening ear, someone to talk to and connect with, fostering a kind of solidarity.

This article appeared in Boyz Magazine on 26th November 2015


The Manifesto of People Living with HIV

Tuesday, December 1st, 2015

This Manifesto is a campaign for change identified by the communities of people living with HIV around 5 key areas: HIV stigma, Treatments, Engaging, Support Services, and Aging.

Stigma exists in many settings from healthcare provision, the workplace, faith institutes and within our own communities. We seek to create alliances to tackle HIV stigma and change the discourse on HIV, and that people living with HIV are within our communities, are our family and friends.

We will seek the best and most effective treatments for people living with HIV to enable people to live with HIV as a long-term condition. We recognise that people with HIV have a right to make informed choices around treatment and start ARVs when they are ready.

We seek the implementation of a wider approach to tackling HIV prevention including the commissioning of PrEP.

We believe that policies, services and societal attitudes can only be improved with the greater involvement of people living with HIV. We want to develop the skills and knowledge of people living with HIV to meaningfully engage in policy and decision making.

We want multi-disciplinary and integrated care and support. We want clinical bodies, the voluntary and community sector to champion the value peer support across the UK for people living with HIV. We want to see greater access to psychological support services within the clinic and in the community. We seek greater co-ordination and integration to support people living with HIV on the care pathway for HIV and other long-term conditions.

We recognise care should address the needs of specific communities: Gay Men, Heterosexual Men, Young People, and Women.

With rising numbers of people living longer with HIV we need to ensure there are effective support and services to meet the physical, psychological, social and sexual health needs of all the diverse communities of people living with HIV in old age.

You can view and save the report as a pdf here

And download the one page summary here


Testing Positive: Chris’s Story

Friday, November 27th, 2015

People living with HIV

Testing Positive

A main barrier to some people taking an HIV test is fear of a positive result and the impact it might have on their lives.

In support of National HIV testing week 21st – 28th November 2015, Positively UK aims to remove the fear of testing and worry of a positive result.

During national testing week we will be sharing the stories of seven men and women who have had the HIV test and received a positive diagnosis.

We hope this diverse range of experiences will reduce the anxiety some people may have about testing and will enable those who may test HIV positive to seek support to live well with HIV.

Chris’s Story

In 1992, I became unwell: nothing specific, but losing weight. At that time I was not considered to be in a ‘high risk’ group, straight, professional, white – so I was tested for meningitis, appendicitis, even obscure tropical diseases (my work had taken me to countries with high HIV prevalence). Eventually a doctor ordered tests for ‘everything’ the results came back: I was HIV positive. I didn’t know much, but I knew there was no treatment. It was devastating not just for me, but for my wife and my family. These days I know an HIV test would have been offered to me much earlier, and that the treatment is by and large, highly effective and highly tolerable. We have come a long way in a short time.

After testing, my health quickly went downhill, I was given an AIDS diagnosis almost immediately and was seriously unwell. I think I was saved by the anti-retroviral treatments in 1996 and the love of my wife and family and the grace of god and the NHS. I was given the best of care, free and with access to the latest drugs. In those days the drugs rapidly become useless as resistance set in, unlike the modern drugs, which give you a number of treatment options.

There is hope now. I can remember, before treatment, telling my doctor that I was trying to stop smoking, and her reaction was did I really want to stop? She knew that the future was bleak, even stopping smoking was a bit pointless. After the ARV’s kicked in in the mid 90’s I signed up for a physical rehab course at a gym in my hospital. Two nurses had to help me get to the gym. Today I regularly train and am fit enough to train others in the noble art of boxing.

For my age, for any age, I’m fit and well. HIV is something I have to stay on top of; take my meds regularly and engage with my HIV doctor, but it doesn’t stop me from doing anything I set my mind to. Now there is lots of hope, effective treatment and I have a healthy spiritual outlook… and I’ve quit smoking!


Testing Positive: Marc’s Story

Thursday, November 26th, 2015

People living with HIV

Testing Positive

A main barrier to some people taking an HIV test is fear of a positive result and the impact it might have on their lives.

In support of National HIV testing week 21st – 28th November 2015, Positively UK aims to remove the fear of testing and worry of a positive result.

During national testing week we will be sharing the stories of seven men and women who have had the HIV test and received a positive diagnosis.

We hope this diverse range of experiences will reduce the anxiety some people may have about testing and will enable those who may test HIV positive to seek support to live well with HIV.

Marc’s Story

I took the HIV test in 1986. It was the early days of the epidemic in the UK and the test had just become available, my boyfriend at the time suggested going along and it felt the right thing to do.
I had seroconversion illness about six months before, but I put it down to a bad case of the flu. I had no symptoms at the time of my test, so I expected a negative result.

I met with a health advisor before the test and was given an hour of pre-test counselling (yes that really was a thing) to prepare me for the result. I then had to wait two weeks for the result. This was a time when rapid HIV testing was only a dream and we still talked about the ‘window period’.

When I got the result I was shocked and devastated. I remember walking around in a daze for weeks. I was diagnosed at a young age, ten years before the effective treatment was available. HIV was still considered a “death sentence” and the Dr’s prognosis was that I might develop full blown AIDS within a year.

The very first thing I did was to contact another person living with HIV as I figured they might understand what I was going through. It was the best thing I ever did. I spoke to someone at Body Positive, who reassured me that I wasn’t alone and things were going to be ok. Just having someone else who could empathise with the day-to-day reality of living with the virus was some important.

The excellent care I’ve received from my health care team, the support of my close friends and family helped get me through. However the support I’ve received from other people living with HIV has been invaluable.

My reality today is very different to 30 years ago. HIV was still considered a ‘death sentence’ when I was diagnosed and for 15 years I felt that ill health leading to death might occur at any moment. Now I know that my HIV is a long term manageable condition and I’m more likely to die of something related to old age than I am from an HIV related illness.

My reality in 1986 was also that I was infectious and could pass on HIV to my sexual partners. Today with effective anti-retroviral treatment, my viral load is undetectable which means the HIV is as such low levels in my body that I am now uninfectious and the chances of me passing HIV are virtually zero.


Testing Positive: Aicha’s Story

Wednesday, November 25th, 2015

People living with HIV

Testing Positive

A main barrier to some people taking an HIV test is fear of a positive result and the impact it might have on their lives.

In support of National HIV testing week 21st – 28th November 2015, Positively UK aims to remove the fear of testing and worry of a positive result.

During national testing week we will be sharing the stories of seven men and women who have had the HIV test and received a positive diagnosis.

We hope this diverse range of experiences will reduce the anxiety some people may have about testing and will enable those who may test HIV positive to seek support to live well with HIV.

Aicha’s Story

One Sunday, I had severe stomach ache so my cousin took me to the emergency department. They couldn’t find anything wrong with me therefore the doctor just gave me some paracetamol to ease my pain and advised me to go to the GUM clinic. On Monday, I decided to go to the nearest GUM clinic for a full check-up. I used to go to the gynaecologist back home but since I arrived to the UK, I haven’t been and I didn’t know it was free. Once I was in the clinic, I ticked all the boxes (general check-up). Taking an HIV test wasn’t an issue since I had the same boyfriend for 4 years and I tested negative (although I didn’t know the meaning of my result) before starting my relationship with him.

When I got my result, I didn’t know what to think. Everything went blank. I don’t know, I think I was devastated because from that moment, I knew my life will never be the same again. I knew I had to change my life plans and kept my diagnosis from my mother. I shared everything with my mother before HIV but HIV was the only thing I would rather kept for myself. I didn’t want to break her heart and to disappoint her.

I didn’t know anything about HIV and the stigma attached to it, as soon as I left the consulting room, I called my boyfriend. A few weeks later, I rang all the persons I had been with. I didn’t want to blame my boyfriend or to see anyone of us ill. After perfectly doing my duty of saviour, I decided to go on treatment. I didn’t need to go to treatment straightway but that was the only way I could be reassured that I won’t die.

I have always been a positive, confident and resilient person. Knowing that being on treatment is a way forward to a healthy life, meeting others people who were a living proof that I will live and going to support group were the keys to my recovery. The information I was getting from trainings and support groups really change my perception about living with HIV.

The day I was giving a positive HIV diagnosis I thought all my life will be ruled by it, but today I see HIV as a tiny virus I control.

I truly believe that receiving a positive HIV result is devastating but living with it is much easier. It didn’t change my life plans but rather it helped me to rethink about my priorities. I am convinced that it made me a different person. It has unveiled the true me. I am more focused and determined to achieve my goals. Now I know exactly what I can accept or compromise. I am also more aware of my well-being and care much for myself than ever.

Is taking three tablets a day an issue? Not for me especially when I think about people who have to travel miles to get their tablets or who can’t access to their ARVs. I feel blessed and grateful to be HIV positive when things have changed.


Testing Positive: Jim’s Story

Tuesday, November 24th, 2015

People living with HIV

Testing Positive

A main barrier to some people taking an HIV test is fear of a positive result and the impact it might have on their lives.

In support of National HIV testing week 21st – 28th November 2015, Positively UK aims to remove the fear of testing and worry of a positive result.

During national testing week we will be sharing the stories of seven men and women who have had the HIV test and received a positive diagnosis.

We hope this diverse range of experiences will reduce the anxiety some people may have about testing and will enable those who may test HIV positive to seek support to live well with HIV.

Jim’s Story

It was early in 2014 and I was living in Brazil. One night when going to bed, I discovered a rash all over my upper body. The doctor I saw there didn’t seem to know what it was despite taking a blood test. The rash didn’t go away so eventually I decided to fly back to the UK and go straight to the sexual health clinic for tests.

To be honest, I felt a sense of relief when I got the result. I’d been feeling anxious for nearly 6 weeks wondering what was wrong with me and although it was a big shock, it was good to finally have a firm diagnosis. The rash turned out to be syphilis and was easily treatable. The sensitivity in the way the clinic handled telling me about the HIV was exemplary. I couldn’t have been in better hands.

After walking out of the clinic I was meant to meet a friend who worked nearby but he was stuck in a meeting so I went to the pub and had a stiff drink. This probably wasn’t the best idea after a shot of penicillin and by the time my friend arrived, I was shaking and feverish. He sent me back to his in a cab and joined me after work. Another friend came over and between them, they helped me through those first difficult hours.

I’ve always been a very open and honest person and so I wanted to tell my family and friends. I was amazed and grateful for the support and understanding I received from every single one of them. Not a single bad reaction, which I guess surprised me. I also attended a recently diagnosed workshop with charity Positively UK who provided so much help with those questions about day to day living with HIV. Meeting others in a similar situation was invaluable in helping me realise that I wasn’t alone in the feelings I was experiencing.

Treatments have developed so fast in the last few years, whereas public awareness hasn’t kept pace with the realities of living with HIV today. Before I was diagnosed I knew it wasn’t a death sentence, but I had no idea about undetectable viral loads and that modern treatments effectively make you healthy and uninfectious.

I think if more people realised that it’s possible to live a completely normal life with HIV, then attitudes to the virus would really start to shift.


Testing Positive: Jill’s Story

Monday, November 23rd, 2015

Women living with HIV

Testing Positive

A main barrier to some people taking an HIV test is fear of a positive result and the impact it might have on their lives.

In support of National HIV testing week 21st – 28th November 2015, Positively UK aims to remove the fear of testing and worry of a positive result.

During national testing week we will be sharing the stories of seven men and women who have had the HIV test and received a positive diagnosis.

We hope this diverse range of experiences will reduce the anxiety some people may have about testing and will enable those who may test HIV positive to seek support to live well with HIV.

Jill’s Story

I was tested for HIV as part of routine antenatal blood tests during my first trimester of pregnancy in September 2011.

When I got the result I felt confused, my husband had told me he was negative and I had no reason to think otherwise. I felt fear, not initially for myself, but for my unborn child. I felt anger and also a sense of grief. I thought why me?

I contacted Positively UK the day after I was diagnosed as I wanted to speak to another woman who was positive and if possible someone who had gone through a pregnancy with HIV. I also got in touch with my local HIV support charity, though this wasn’t something that I really embraced as I didn’t feel connected. I cried, and I asked my husband a lot of questions.

I also just carried on with my life.

I’m a researcher who already had a solid understanding about HIV, and this knowledge helped get me through. My friends and my family really helped me too, but I mainly coped with my strength of character and a ‘fuck you’ attitude.

When I was first diagnosed, even with my knowledge base, I was devastated and since then I’d be lying if I didn’t say that there had numerous ups and downs. However, to cut a long story short, here and now in November 2015, I’m doing great, actually amazing. I’ve an undetectable viral load, and that for me feels like I’ve won the lottery, not that I’ve ever won the lottery, but you get what I mean. My daughter was born healthy.

I’ve moved on from my husband because he wasn’t supportive of my needs. I’m now in a relationship with someone who is negative. Go figure. Instead of being outside looking in on the HIV community I’m now actively involved and have recently been appointed to the board of trustees for the Terrance Higgins Trust. Basically I’ve embraced my status and I intend to live a long and productive life and do everything that I can to educated and support not only people who are living with HIV, but also the general public.


Testing Positive: Joshua’s Story

Sunday, November 22nd, 2015

People living with HIV

Testing Positive

A main barrier to some people taking an HIV test is fear of a positive result and the impact it might have on their lives.

In support of National HIV testing week 21st – 28th November 2015, Positively UK aims to remove the fear of testing and worry of a positive result.

During national testing week we will be sharing the stories of seven men and women who have had the HIV test and received a positive diagnosis.

We hope this diverse range of experiences will reduce the anxiety some people may have about testing and will enable those who may test HIV positive to seek support to live well with HIV.

Joshua’s Story

I had a HIV test on the 31st October 2014.

I was always scared of people who had HIV, if someone told me they had HIV on a dating app, I would cease the conversation and talk to someone else. Being the age that I am, in my 20s, I had only heard the horror stories from the 1980s, and seen the films where the gay men with HIV die at an early age. Going for a HIV test made me feel very anxious, because I was scared of the unknown, because I was ignorant to what living with HIV was like.

I had decided to go along to the clinic because I had conjunctivitis in my eyes for the second time in as many weeks. I had read that recurrent conjunctivitis could be caused by chlamydia, so I thought I’d get checked out for that.

Whilst I was at the clinic I was offered a 60 second HIV test, and I thought I might as well have one as I hadn’t had one for a while, I hadn’t been having unprotected sex, so assumed that the result would be, as every test before that had been, negative.

I was told by a nurse that it was reactive, I had no idea what that meant. My heart sunk… My mind became clouded with confusion, stress and anxiety. What did this mean? I had only ever heard of the test result being positive or negative, not reactive. What reactive did mean, was essentially a positive result. The 60-second test was basically checking for HIV antibodies in my blood, and they were present.

I was on a break from work when I went to have my test, and it became apparent that I wasn’t going to be heading back to work straight away. I was taken from the room I was diagnosed in to a different room with a health advisor who had a lot of experience and training to deal with someone that was newly diagnosed. She asked me if I had friends I could talk to, a family member I could call, anyone that I could trust and could support me at that time. My brother was at work, his wife was studying, I didn’t feel I could talk to anyone. I couldn’t drop a bombshell to any friends or family as anyone that I trusted enough was in a different town to me, I couldn’t tell someone if they couldn’t be immediately available for me, because I was a wreck.

I was due to go to a really good friend’s wedding the next day, and I really couldn’t miss it, so I kept quiet and didn’t tell anyone. I went to the wedding, took my mind off my diagnosis, and waited until the Sunday until I told my best friend Michelle, and then my mum shortly after. It was a very intense experience, I felt like I was grieving. It was traumatic.

The first few months were difficult, so I thought by telling people in my family or telling my friends that it would lessen the blow, I felt like this would help me deal with it… So I told a lot of people. They were carefully selected people, of course. I told my best friends, my family and one person from HR at my work, just in case I needed time off.

Telling people all of this was incredibly difficult, but I think it was necessary. Sometimes it was cathartic. When you tell someone something that is so personal, you are opening up the most vulnerable part of you, and some people find this incredibly touching. I have connected with friends on much deeper levels because of how much I have shared with them. This all helped me, and definitely helped normalise the situation, because I had their support and love.

It has been just over a year since my diagnosis, most days, I get up in the morning, I head to the gym, I go to the shops, and then I head to work. I live my life; I go out with friends and enjoy myself. Sometimes I completely forget that I have HIV, because it has become such a small part of me, that it doesn’t define me, but it is a part of me.

My phone alarm goes off at midday and I am reminded to take my daily pill. Every day for about 30 seconds I am reminded that I have a virus in my body, but I know it is under control. For those thirty seconds, I am reminded that the medication (which causes me zero side effects) is doing an amazing job at suppressing the virus, it reminds me that I won’t pass the virus on to others, it reminds me that I have been given the possibility of living a normal, healthy life by the wonderful NHS. I take this pill, and then, I go back to work.

I am Joshua, I am a gay man, I am a brother, I am a son, I am a nephew, grandson, uncle, cousin and friend…

I am HIV positive.


Testing Positive: Helen’s Story

Saturday, November 21st, 2015

Women living with HIV

Testing Positive

A main barrier to some people taking an HIV test is fear of a positive result and the impact it might have on their lives.

In support of National HIV testing week 21st – 28th November 2015, Positively UK aims to remove the fear of testing and worry of a positive result.

During national testing week we will be sharing the stories of seven men and women who have had the HIV test and received a positive diagnosis.

We hope this diverse range of experiences will reduce the anxiety some people may have about testing and will enable those who may test HIV positive to seek support to live well with HIV.

Helen’s Story

My name is Helen, African Woman, Christian and church goer. I was tested in 2001. I had had health problems with my left foot bones not HIV related at all. Among the numerous tests done the Doctor included an HIV Test without asking me. To me it was my luckiest day because had I been asked to test I would have said NO NEED, I am not in any “Risky Category”. Yet on getting my results it was a late diagnosis.

Had it not been that doctor I would be among the many who are living with HIV and yet unaware. Or I would be dead from some disease that is manageable.

Testing saved my life and gave me a change to live longer. I am able to contribute to the development of society as a health working citizen, as a friend, a daughter, a sibling and above all as a mother.

When I got the result I felt lucky, overwhelmed, and full of anxiety about the future. Lucky because I had got a diagnosis and was to begin treatment which would give me a healthier life and a chance to see my son grow. Overwhelmed, how could it be me, for what reason would I be HIV+ when I was never at risk of any of the transmission ways known to me at that time! I was infected through the numerous foot operations I had had way back in Africa. Anxiety about the future: about how long shall I live, how will I take care of my child and where will I leave him. Will I be strong to work, shall I maintain my job. How about relationships, will I ever get into a relationship…???

Everyone reacts differently. I told my trusted friend who is a Medical doctor and she straight away addressed my anxiety: “Helen, with treatment the virus will be managed, you will have a normal life like any other person. See your child grow.”

First I took my medication as told never missed a dose and took it around the same time till now. I told every friend of mine and my family with time and selectively, so I told my parents 9 years later.

I am a spiritual person, I thanked God that I was detected to be able to get on treatment rather than dying of something that can be managed. I have kept my faith for strength and trust in the new developments around treatment.

When I told my friends and family, I had no fear and worry of judgement, stigma and discrimination. These important people in my life lived up to my expectations. Their understanding and un-judgemental ways towards me has continued to give me strength to push on with life.

For someone diagnosed late and being told that I was undetectable after being on treatment has kept me going and feeling blessed. The motivation to keep healthy and see my child grow and be independent keeps me going. Being able to complete graduate school, remain employed and being supportive to other people living with HIV through sharing experiences also keeps me going.

In the early days and years of diagnosis, I worried a lot about tomorrow if I shall be there. I worried about people knowing about my HIV status, and feared getting into an intimate relationship.
Today my life’s plan is of when I am 99 since in my family people do get to that age plus. I am talking about grandchildren despite my son being young and still in school. I am open to dating when the opportunity avails itself. I live openly about my status, I have appeared on television, in magazines and talked to communities, universities and colleges.

At diagnosis every thought and dream was about HIV and me living with it. Today it takes me sharing an experiences through peer support to think about HIV and it is never in a burdensome, worrying or stressful way.


Women Know Best Report

Thursday, September 24th, 2015

Key findings in the report are:

  • Improve the mental health of women living with HIV by providing well integrated health and social care services, including peer support, which address holistically the specific needs of women.
  • Commission innovative projects that promote the active and meaningful engagement of women living with HIV in the design and delivery of policy and programmes at community and national levels.
  • Train frontline health and social care staff in recognising signs of violence and introduce screening and referral to effective support for GBV in clinical and community settings.
  • Address the lack of gender specific data, and under-representation of women in clinical trials: increase positive women’s treatment literacy and ability to work collaboratively with researchers in designing, implementing and evaluating research.
  • Provide sustained support to networks of women living with HIV to increase their strategic influence and advocate for change that will improve women’s well-being and quality of life.

A new report which addresses the wide range of issues which specifically affect women living with HIV and looks at some of the best way to address them.

This guide has been produced in conjunction with women living with HIV, and provides a helpful evidence base for support organisations and commissioners to improve and expand their support services for women living with HIV. Women living with HIV face a higher risk of poverty, mental ill health, and gender-based violence than the general population, and are more likely than men who have sex with men to be undiagnosed or diagnosed late.

We first outline the key issues facing women living with HIV in the UK today. We showcase examples of best practice from throughout the UK across a range of sectors that have been successful in tackling these issues and improving women’s health and well-being. Finally we end with recommendations for commissioners, voluntary and community groups, medical and social researchers, and healthcare providers to improve policy and programmes.

In December 2014, Positively UK hosted the “Women Know Best” conference in London, which brought together women living with HIV from across the UK. Women discussed the key issues that affected their lives, shared experiences, and developed recommendations to improve services. We then built on the ideas from the conference, and findings from a literature review, to produce this bottom-up report which is grounded in the real-life experiences of women living with HIV.

Evidence from the conference and literature review highlighted a number of key issues for women living with HIV. There were several areas in which we could not identify current best practice, and that deserve special attention to develop and establish support. These include services for lesbian and bisexual women, trans women, sex workers, and women within faith communities.

 

You can view and save the report as a PDF here.


WISE-UP+ 2015

Thursday, September 3rd, 2015

Women Inspire, Support and Empower –
Unleashing Positive Potential

Have you ever felt fed up and unhappy about society’s attitude to HIV?

Would you like more respect and acceptance?

Do you want to make a difference? Then WISE-UP+ is for you

 

Women: Meet other women living with HIV and share experiences Inspire and be inspired: Learn about specific issues for women living with HIV and developing strategies to address them Support: Build a support network and learn how to find sources of support Empower: Know your rights, develop skills to be heard and influence decision making. Unleashing Positive Potential: Be yourself!

 

The workshop will include:

  • Knowing your rights
  • Confidence building
  • Nurturing support and self acceptance
  • Sexual healing –sex pleasure and relationships with HIV
  • Skills for challenging injustices and action for change
  • Creativity and poetry

 
 

To apply for a place, please complete the
Application Form

 

“I do feel different after coming to WISE-UP+ I now know how to deal with the problems we get.”

Previous WISE-UP+ attendee

 

Where: Luther King House, Manchester

When: 30th October to 1st November

To find out more contact us on:

020 7713 0444 | wiseup@positivelyuk.org

 

Application deadline: 25th September 2015

Travel, food and accommodation and some support for childcare will be provided.


Between the Sheets

Tuesday, July 21st, 2015

 

Ladies… Let’s talk sex, pleasure and HIV!

Am I doing it right?

How do I negotiate safer sex with my partner?

Will sex be the same after a diagnosis?

 

Are you a woman living with HIV?

Aged 18+

Interested in learning more about sex and pleasure?

Want a complimentary MAC makeover?

 

With the help of our special guests we will have a day filled with:

  • Girl talk
  • Open discussions around sexual pleasure
  • Sex toy display
  • Sex, pregnancy and HIV
  • Creative workshops
  • Growing older with HIV
  • MAC make up demonstration

When:

Saturday 19th September

11:00am – 5:30 pm

Where:

345 City Road, London EC1V 1LR

 

For further details and to book a place, please contact:

Maureen mkiwanuka@positivelyuk.org or
Silvia spetretti@positivelyuk.org

 

 


Positive Change

Tuesday, June 30th, 2015

Key findings in the report are:

  • The Department of Health should, as part of its review of the NHS Outcomes Framework, ensure that any additional indicators for ‘Domain 2’ (Enhancing quality of life for people with long term conditions) recognise the need to deliver improvements specifically in HIV care.
  • All HIV specialist clinics should implement a nationally agreed set of HIV-specific patient experience measures, building on the ‘Positive Voices’ work by Public Health England.
  • NHS England’s Insights and Feedback team should consider the opportunity of general surveys of patient experience and outcomes being fully harnessed to collect information about HIV care (for example the national GP survey could capture anonymous information about HIV status and experiences of care).
  • NHS England should work closely with people living with HIV to develop the use of patient reporting tools – PREMs and PROMs – in HIV and ensure that any monies earned through rewards for delivering high quality care are fed back to the services that delivered them.
  • The HIV community should build a consensus regarding data ownership and on how data can be shared effectively, in order to drive improvements in care across providers whilst ensuring that patient confidentiality and protection is maintained.
  • NHS England should work with the HIV community to ensure that information is shared, effective mechanisms for patient involvement are in place and improvements in health and social care are informed and driven by people living with HIV.
  • Public Health England should, through annual HIV reporting ensure that data is provided to Health and Wellbeing Boards, Directors of Public Health and NHS England to enable effective commissioning. The data provided should contain both prevalence data and measures of patient experience, aggregated at national and local levels.
  • NHS England should ensure that HIV testing of people from vulnerable populations is offered as a mandatory feature of testing for sexually transmitted infections. This must be reflected in NHS contracts, for example, the QOF of the GMS contract.
  • NHS England should ensure people who are newly diagnosed with HIV receive the appropriate information about treatment, care and peer support at the point of confirmed HIV diagnosis.
  • NHS England’s Clinical Reference Group for HIV should include measures of patient experience in the HIV Quality Dashboard to provide a complete picture of whether HIV services are responding to the needs of patients.
  • NHS England should strengthen incentives through the use of CQUIN payments and the QOF to measure and improve patient experience and strengthen communication between HIV clinics, other specialist providers and GPs.
  • NHS England should ensure GP practices in areas of high HIV prevalence have sufficient knowledge to treat and care for people living with HIV in a way that meets their needs as identified through PROMs.
  • The HIV community should in partnership with GPs, develop proposals for integrating primary care and HIV services that would improve the care of people living with HIV.

A new report highlighting the existing and new challenges in HIV treatment and care that people living with HIV are facing today.

Planning effective care for people living with HIV requires several factors to be considered. People living with HIV are often from vulnerable groups that have experienced discrimination, including gay men and migrant communities. HIV is still met with stigma in society and within healthcare settings, negatively impacting upon people’s experience of care and acting as a barrier to accessing the care required. HIV testing, treatment and care are now managed by multiple agencies across NHS England, Clinical Commissioning Groups and local authorities.

To tackle these issues we held two events: a workshop with people living with HIV from across England; and a roundtable with representatives from patient groups, NHS England, Public Health England, HIV specialist care providers and local authorities. Through this we identified six areas for improvement:

  • Access to HIV testing and diagnosis to reduce late diagnosis and improve health outcomes for people living with HIV
  • Patient involvement in decision-making allowing people to make the right decisions for their care, particularly in managing multiple long-term conditions
  • Effective medicines management through co-ordination across specialist and primary care services
  • Access to support from peers in how to manage an HIV diagnosis
  • Care for comorbidities and integration of HIV with other special ist areas such as mental health
  • Provision of high quality care homes and appropriate end of life care for the ageing HIV population

It is essential that people living with HIV have access to and receive good health and social care, have good experiences of care and achieve optimum health outcomes. Currently data focuses primarily upon clinical outcomes of care. In order to assess and improve the patient experience we need to introduce new mechanisms for assessing the quality of care and the outcomes achieved from a patient perspective. These should be centred upon:

  • Co-ordination of care between HIV specialists, primary care and other specialist disciplines
  • Participation of people living with HIV in their own care
  • Mechanisms to assess quality of care in terms of both experience and outcomes
  • Measures to identify and tackle HIV related stigma within healthcare settings

Set out in this report is a summary of recommendations to achieve this. Data gathering and analysis can be costly and time consuming, and we have wherever possible sought to build upon established systems such as the General Medical Services (GMS) contract, and ongoing and important work in development such as the ‘Positive Voices’ survey and the development of Patient Reported Experience Measures (PREMs).

 

You can view and save the report as a pdf here.

 


Positively UK to challenge HIV stigma at London LGBT Pride

Monday, June 22nd, 2015

 

This Saturday, to promote awareness and show solidarity across everyone living with and affected by HIV, Positively UK will be marching at London LGBT Pride for the first time. The event will also mark the start of a new project supporting gay and bisexual men living with HIV in London.

 

Positively UK are marching at London LGBT Pride to spread awareness of HIV stigma!

 

For Jim Fielder, Positively UK’s new gay men’s support worker, this is his first Pride march and the first time he has been so public about his status since his diagnosis last year. ‘I believe it’s important to be open and to challenge some of the attitudes that still cause misery for many people living with HIV, including within the gay community’ says Jim. ‘I’ve been lucky. I had the confidence to get tested, get access to the latest medication and have a great support network around me. But this isn’t the case for everybody. In spite of the improvements in the treatment and care of HIV, a significant proportion of people living with HIV still report experiencing stigma and discrimination and this leads to poor physical and emotional health.

The aim of Positively UK’s first Pride march is to show the face of HIV in 2015 and challenge the stigma people living with it still experience. One of these people is Steve who was diagnosed with HIV in 2014. Steve accesses support at Positively UK, but like many others wants to remain anonymous and won’t be joining in on Saturday. ‘Although I would love to be part of Pride, I will not be able to due to my social background. In my culture it is hardly acceptable to be gay, let alone to be gay and HIV+. I would be extremely worried and nervous that someone would see me marching on Pride day.

We know that HIV stigma is a barrier for some people to get tested’ adds Jim ‘and as a quarter of people estimated to be living with HIV are unaware of their status, this is an ongoing problem. We may only be a small group marching on Saturday but we will be marching for all those people living in the shadows who still struggle to be more open about their HIV status and get access to the support they need.

 

Positively UK will be marching under the theme of ‘We are Positive’ and encouraging people to tweet on the day using the hashtag #wearepositive. If you would like join them on the March please contact JFielder@positivelyuk.org or call 020 7713 0444