Positively UK appoints a new CEO

Monday, February 11th, 2019

Positively UK is excited to announce the appointment of Silvia Petretti as the new CEO

Silvia joined Positively UK in 1999  as volunteer in the Community Development Team, providing treatment information to women attending HIV clinics. Soon she became a staff member leading on support for women with drug and alcohol issues and providing outreach in Holloway prison. Since then Silvia has worked in many roles as a manager, from setting up PozFem, the first national women’s network, developing new activists through the Taking Part Project and the recent Changing Perceptions campaign. For the past six years Silvia has lead in her role as Deputy CEO. Silvia has also represented people with HIV on the British HIV Association (BHIVA) board, between 2008 and 2011, chaired the UK CAB and represented the Global Network of People Living with HIV at the UN. Silvia has been living with HIV for 22 years.

Silvia Petretti, CEO

Silvia said “I am delighted to have been appointed CEO, I know, from personal experience that, peer support, sharing our experiences with others in the same situation, can be an incredible tool for personal growth and better health. I also believe that peer support is instrumental for social change and ensuring that as people living with HIV, we have the knowledge, connections and confidence to influence decision making and improve quality of life. I am honoured and excited to work with everyone at Positively UK, to implement our new strategy”.

Paul Decle, Chairman of the Board of Trustees at Positively UK said:“Silvia’s appointment as CEO is natural step for Silvia and Positively UK. Over 20 years Silvia has distinguished herself as an outstanding advocate for the rights of people living with HIV and the quality of their care. She is an excellent ambassador for Positively UK and has played a key driving role in the success we have enjoyed in delivering peer to peer support services to the people who need it”.


Follow Silvia on Twitter or read her blog here.



Gay Men’s Talk: upcoming events

Thursday, January 31st, 2019

February brings exciting opportunities to gay men to socialise and build a healthy sense of self-care in a friendly environment.

6th February: Yoga Nidra

The nurturing and meditative heart of yoga

Yoga Nidra is an awareness and meditation practice rooted in tantrik Yoga. It is usually done lying down or sitting up comfortably, after warming the body with gentle Yoga stretches and breathing exercises. Yoga Nidra translates as the “yogic sleep” and induces a deep state of relaxation whilst remaining fully awake. The practice promotes experiences of profound healing, rejuvenation of energy and well-being. Regular practice can also be a clearing for enhanced creativity and improved productivity, contributing positively to more effective dealing with life’s challenges. It may also serve as a life skill to evolve one’s life in the context of deeper purpose and meaning, helping to shape a future that inspires and empowers.

Please wear warm loose clothes, for example a track suit, as the body relaxes deeply during the practice. The session will take place on Wednesday, 6th February at 6:30pm.

To book a place contact cohanlon@positivelyuk.org

16th March: Everyday Mindfulness

Learn how to integrate mindfulness techniques into everyday life! Join the amazing public speaker and trainer Mina Kakaiya on Saturday, 16th March at 12:00pm.

Mindfulness is simply a method of mental training that involves paying attention in a particular way: on purpose, in the present moment non-judgmentally. Mindfulness is practice of simply quieting the mind chatter and focus on being deeply attuned to yourself, your environment and those around you from moment to moment. It is a natural state of mind – focused, present and aware. Rooted in the ancient Buddhist art of meditation, mindfulness can be learned and practiced by anyone, no matter what their religious or cultural background.

Benefits of regular mindfulness practice:
• Help you cope better with pain
• Improves the immune system and increases the body’s self-healing capacity
• Improves memory, focus and attention span
• Improve control of blood sugar in type II diabetes
• Improves sleep
• Reduce stress and increase ability to handle stressful situations easily 

By the end of the session you will be able to:
• To understand what mindfulness is
• The benefits of regular mindfulness practice in promoting wellbeing
• Understanding the default and experiential mindset modes response to events

To book your place, please contact cohanlon@positivelyuk.org

9th March: Let’s Talk Chems

On 9th March at 12:30pm David Stuart will be hosting a discussion at Positively UK on the history of the modern chemsex phenomenon, and how it is impacting our communities and our lives. He will be exploring the pleasures and the harms causes, all within the framework of gay men’s experiences of gay sex and online hook-up culture.

To book your place, please contact cohanlon@positivelyuk.org


I AM HERE festival: workshops calendar

Thursday, January 17th, 2019

I AM HERE: Connect, Share, Explore is a festival celebrating the lives of women with HIV. The festival will take place on 8th and 9th of March, and we have a series of fascinating workshops for us to mobilise and connect!

For more information and to book your place, please e-mail catwalk4power@positivelyuk.org


We are looking for a web developer!

Friday, January 4th, 2019

We are going to refresh and add some cool vibes to our website shortly. If you happen to be passionate about web design or photography, check our call for proposals here.


I AM HERE festival

Friday, January 4th, 2019

I Am Here Festival, 8-9 March 2019

International Women’s Day 2019 Festival for All Women Living With HIV

Join us for a two-day festival honouring the lives of women with HIV. Let us increase the support and solidarity in our communities and wider society so that we can challenge perceptions and discrimination around HIV.

Connect, Share, Explore: I AM HERE

When: 8th March

Where: Royal Central School of Speech and Drama, Eton Avenue, London, NW3 3HY

On International Women’s Day 2019, we will facilitate a self-reflection led by women living with HIV on the theme “I Am Here”. Together we will boost our physical, emotional and spiritual wellbeing through exploring dimensions around taking space, being present, being heard, being visible, how to create a personal and collective mission statement. Speakers and workshops tbc shortly.

Connect, Share, Explore: CATWALK 4 POWER

When: 9th March

Where: Royal Central School of Speech and Drama, Eton Avenue, London, NW3 3HY

On 9th March the Royal Central School of Speech and Drama will host a very special catwalk where women with HIV will manifest their strength though the outfits they have styled and designed themselves during the workshops. The Catwalk 4 Power will use creativity to celebrate women’s power, solidarity and resilience. Let us together challenge common perceptions of women with HIV as ‘victims’, and to honour and celebrate our power, resilience and beauty. The event will feature poetry, visual performances and a fashion show, all designed and performed by women with HIV.

The festival will provide women living with HIV across the nation with a platform to meet people and network, develop ideas, form action plan and position themselves as experts and activists. In addition, we will raise visibility of women living with HIV, get inspired and have fun.

Participation in the festival is by registration only. Positively UK will provide 10 full scholarship and 10 travel scholarships for women outside London to participate. To register your attendance or apply for a scholarship, please fill in the application form no later than 5pm on 4th February 2019.


Merry Christmas!

Thursday, December 20th, 2018

Positively UK will be closed during the Christmas week and on New Year’s Day (24th – 31st December).

We are back on Wednesday 2nd January 2019.

Thank you for all your support and participation during 2018! We wish you all very happy and prosperous 2019!


Women’s Christmas Party!

Tuesday, December 4th, 2018

Women’s Christmas Party


World AIDS Day Newsletter

Saturday, December 1st, 2018

Read Positively UK’s December Newsletter here.


HIV and Stigma

Friday, November 30th, 2018

On World AIDS Day our Training Coordinator and HIV activist Becky shares her thoughts on HIV and stigma

Becky Pang

By Becky Pang

@poz-woman87

I wanted to share with you the first bit of public HIV activism I did, this took place 2 years ago on World Aids Day 2016. I was asked to do a short public speech about stigma. I was excited to be asked but I was also very nervous about talking about my status to an audience. At first I tried to write a speech about stigma and keep it neutral and not mention myself at all. However I’m not that sort of person, me experiencing HIV and living with it gave the best voice to talk about stigma.

This caused a massive argument between me and my boyfriend at the time he didn’t want me to put myself out there like that. I was proud to do this speech, to prove to myself how far I had come in a year since diagnosis. The year before I was down, depressed and looking for all sorts of escapes to get away from thinking about my status. I asked my parents and a few close friends to come and watch.

On the day I went over my speech and wrote it out. I was mostly excited. When I got there I was last on the programme. Four people spoke about HIV before me, mostly people who were not living with HIV. I grew more nervous as the time went on. I looked across the crowd of around 30 people and noticed the local LGBT youth group had come along. Stood there was one of my students. She hadn’t seen me yet. I met and spoke with the CEO of the charity running the event and he assured me that if I wanted to back out and not speak because of her being there he (or anyone else) wouldn’t think less of me. But I knew the girl and I trusted her not to spread my status about.

I have a video of the speech but I don’t think it is a good enough quality to share.

I went to the platform, caught the student’s eye and gave her a big smile. She looked shocked; I didn’t look back at her again, I may have crumbled! During the speech I was nervous, my voice was shaking, I felt I touched my hair too much, gestured too much and talked a little bit too fast. But people responded. When I was talking I saw people nodding to what I was saying. They laughed at my small jokes and murmured agreements. When I was finished I got a massive round of applause. The charity had bought me some flowers and the CEO was moved to tears (a reaction I was not expecting!).

Afterwards everyone was telling me how brave I was to talk so openly. It didn’t feel brave, it felt like I was exploiting having HIV and all the help everyone had given me for a networking opportunity. Mainly I just hoped that I could influence some of the opinions of people listening. The ones who weren’t living with HIV,  the kids in the LGBT group, the ones who came with friends or just stumbled across the vigil and listened to see what was going on. That they would go away from there with fewer stigmas about people with HIV.

I found my student and asked if I could have a word. I asked if she wouldn’t mind not spreading this around school, to which she promised she wouldn’t. After that I asked how she was and if she was doing ok. With the deepest sincerity in her eyes she looked at me, put her hand on my arm and said “Miss, are you ok?” It was so sweet I laughed to stop myself choking up and said “yeah I am now”.

My Speech

I want to talk to you about stigma, the stigma surrounding HIV and AIDS.

We are lucky that in this country because of our brilliant medical services that having HIV doesn’t mean what it meant 30 years ago. HIV patients live long, happy and healthy lives.

I was tempted to say HIV sufferers. But I don’t suffer, not really. I suffered when I was diagnosed I was all consumed by the thoughts of people judging me. What will they think, what can I possibly do to explain? Every time I told someone I felt compelled to give them a list of my sexual history just so they knew it wasn’t me, it wasn’t my fault…..I wasn’t a whore or an addict, just unlucky. If you were diagnosed with diabetes would you be compelled to tell your friends all the fattening and sugary foods you’d been eating? It’s just not the same is it?

So why the stigma?

From my point of view its two things, one is sex, how most people get it. British people don’t like talking about sex and that’s one of the reasons the barriers are there. The other is the lack of education. I work in education and you’d be surprised that the myths are still there, you can catch it from a toilet seat, catch it from kissing, that you can’t have children. One I still believed until I was diagnosed.

I hope that young people having a good education will help the elders of our communities change their opinion.

I myself have never experienced any discrimination because of my status, not directly anyway….but the suggestion of it lingered. A few months after if I told people about it, I wanted to talk again but it was very hard to bring up, the topic seemed taboo. Like ‘yes we know you have it but let’s not talk about it in public’

Now I’m not wanting to wear a badge saying “I’m positive ask me how!?” But why can’t I bring it up in conversation with my friends?

Because it makes others uncomfortable. Uncomfortable to talk about it, uncomfortable to ask about it and uncomfortable to be asked about it. I had one friend tell me that she wanted to ask me how I was doing how I was feeling and coping be she felt she couldn’t that she shouldn’t because of the stigma around it.  

Now no one I have told is a bad person, they all mean well and have accepted my diagnosis but some still judge others about how they might have caught it and have said things like ‘you just don’t know do you?’

And they’re right, I don’t know. I don’t care to know. It doesn’t matter to me, it shouldn’t matter. It was like it’s ok we accept you because we know you but anyone else we’ll still judge. All that matters is helping them so they have support, so they can manage and live without stigma without  being discriminated and so it doesn’t develop into aids anymore because we won’t let it.

Without the help of my Dr and all the nurses and everyone who works at the clinic I wouldn’t be able to talk to you all like this. I remember hearing about this event last year and I couldn’t even bring myself to attend. Let alone be a participant. I want to help now, I know I can offer that support to someone who might come up against stigma from friends, family or co-workers. So at least they would know that there is someone who cares who is happy to talk about HIV. Because we all should be open to talk about it. So more people are safe and more get tested and it’s not hidden away anymore.

Thank you.

 

Follow Becky on Twitter @poz_woman87

Becky also shares her views and through-provoking life stories on her blog  https://pozwoman.wordpress.com

We are recruiting for two Catwalk 4 Power Coordinators!

Tuesday, November 27th, 2018

 

SALARY  £25,000 to 27,000 per annum pro rata, depending on experience
HOURS 15 hours per week
DURATION 1 Year fixed-term contract

Catwalk For Power Coordinator (two posts):

This one-year project will build on the success of the 2018 Catwalk 4 Power Resistance and Hope. Our pilot model gathered over 20 women with HIV to promote action to challenge stigma through creative participatory methods.

In 2019 the Catwalk for Power will create three series of workshops, with three different women’s groups (London, Brighton and Manchester), to look at the roots of stigma towards women with HIV and develop skills and strategies to confront it.  The workshops will lead to the performance of three Catwalks 4 Power, where women with HIV will manifest empowerment through their performances and with the outfits they have styled and/or designed. 

The project coordinators and volunteers will also do outreach in the wider community through local market stalls. Markets are a key place for social interaction between women, therefore each catwalk group will organize two market stalls displaying products produced during the workshops to disseminate information and raise awareness through women-specific HIV resources.  

At the end the project coordinators in collaboration with volunteers, participants and Positively UK staff, will produce a report in the form of a Catwalk 4 Power ‘toolkit’ ,  to share learning so that other women’s groups around the world can be inspired and know how to create their own Catwalks for Power.  

Successful candidates will be:

  • Diagnosed, and living with HIV, for at least two years
  • Open about living with HIV
  • Self-starters, able to work as part of a team and under own supervision
  • Experienced in public speaking and/or activism
  • Interested in arts and crafts or performing arts

If interested, please request an application pack by contacting Positively UK:

020 7713 0444 or info@positivelyuk.org

Application Resources

Job Description

Personal Specification

Final date for applications is 10 am on Friday 14th December

Interviews will be held Tuesday 18th December

 


Festive Drop-in!

Tuesday, November 27th, 2018

As the festive season is upon us, I’m aware that many of you might have plans, so the team at Positively UK thought it might be a great idea to have some teas, coffees, mulled wine and mince pies. So, if you’re around on Thursday 6th December; there are two drop in times to join us. 10am-12 noon and for those who might want to join us after work 6pm-8pm. You’re very welcome to bring your friend or partner, We would love to see you, and have a catch up. Put your Christmas jumpers and join us!


Join the Red Run

Friday, November 9th, 2018

The largest HIV fundraising event – Red Run – is back on 1st December, and we are excited to invite you to support Positively UK once again!

When: 1st December, 11am – 15:00pm

Where: Victoria Park, E9 5EG (NE corner). It’s a 7-minute walk from Hackney Wick Overground.

Along with our peer-led support, Positively UK offers welfare advice and financial support in extreme circumstances. Our hardship payments act as a safety net to cover day-to-day living costs. This year we are hoping to raise funds for our Hardship Fund.

You can run/walk/strut 5k or 10k, or you can simply come to cheer those who will take part. Changing rooms and bag storage will be available.

We will encourage all Red Runners to bring a jumper that they wish to donate. They will wear the jumper until the race begins. We’ll then collect all the jumpers and donate them to Wandsworth Oasis and their charity shops.

DJs from Horse Meat Disco/Eagle and DENIM will help keep people entertained during. Madam Storm will perform a powerful strut.

London City Voices will sing along the route and flash song mob during the start.

We’ll have an AIDS Memorial marquee, consisting of AIDS Memorial quilts, exhibition curated by the The Welcome Collection and candles that people can place in the shape of a ribbon.

Starbucks will generously pour all participants and guests hot drinks, and the beautiful people at the People’s Park Tavern will once again be hosting the official World AIDS Day Red Run after party with a special BBQ deal: £10 for a burger and beer served in a large heated marquee next to the finish line.

Bring your friends and family, all are welcome to join in the Red Run festivities!

For information contact Ellie: eangus@positivelyuk.org


Changing Perceptions: Transforming the Way People Feel and Think About HIV

Thursday, November 8th, 2018

by Silvia Petretti, Joint Interim CEO

 

In February 2017 as I was doing a regular check-up at my HIV Clinic I was asked if I wanted to fill in the Positive Voices questionnaire, produced by Public Health England (PHE). It was quite a bulky booklet; it looked time consuming. But I was offered also a high street voucher for £5, and I had some time to spare as I was waiting for my meds, so I filled it up while sitting in front of the pharmacy.

There were many questions on all aspects of my life: from my experience of the HIV clinic and other healthcare services in general, to more personal stuff, such as other health conditions I may live with, mental health, loneliness, violence, alcohol and drug use, experiences of stigma and discrimination, finances and more. I always find those kinds of questionnaires hard to deal with, especially if you are feeling fragile (and most of us do feel fragile on a dark February morning, during a hospital visit, even if it is a routine check-up). Recalling negative experiences can be quite triggering, and many of us living with HIV have experienced trauma in our lives. Post-Traumatic Stress Disorder is not uncommon. However, I knew it was important that the life experiences of people living with HIV are heard, and that there is much more to having a good quality of life than just an undetectable viral load and good CD4 Count. I diligently answered all questions, and rewarded myself with a lovely hand cream from Boots with my voucher.

Over 4,400 people with HIV from England and Wales did the same, and answered the questionnaire in more than 70 clinics. Respondents came from all walks of life and provided a good representation of the diverse groups affected by HIV (MSM, BAME, women, trans people etc.) Through our answers we helped creating a very accurate snapshot of what living with HIV is like in England and Wales today.

I am aware that even without doing much I have always been the ‘object’ of research, and so have all the other over 106,000 people who share their lives with HIV in the UK. For example, our data, anonymised, is included by our clinics when they report every year how many people have been diagnosed, how many are on treatment and how many have an undetectable viral load. This information is included in the national yearly report by PHE released every year around World AIDS Day.

So much research is done on us, as people with HIV, but it is still very rare that we are directly involved in analysing it and actively sharing ownership with the researchers. Positive Voices has been different. The leading researchers behind the survey, Valerie Delpeche and Meaghan Kall, got in touch with Positively UK at the end of 2017 to see how we, as the UK leading peer support organisation by and for people with HIV, could facilitate the process of community ownership and interpretation of the data.

Through PHE, we got in touch with people who had answered the survey and who had said that they wanted to get involved. These respondents were invited to events co-facilitated by Positively UK’s Peer Mentors, who are people with HIV trained in mentoring and group facilitation. These stakeholder’s events included input from other organisations: Watipa, which provided expertise in linking our stories and lived experiences to the data, and the National AIDS Trust who worked with us focusing on what needs to change, finalising policy recommendations and writing the three reports. It was a truly collaborative effort with people living with HIV at its centre.

Having worked in HIV peer support for almost 20 year what surprised me was that most of the respondents who came to the stakeholder’s events were not our ‘usual’ service users. Many of them had never used support services before, or spoken to someone else living with HIV. Many were compelled to come forward because they wanted to ensure that their lives and experiences mattered, and that they could be part of making things better for everyone. There was a clear intention from all of us that we did not wish to be solely ‘objects of research’. Behind the numbers from the survey are our lives, and we are best placed to make sense of them. We are reclaiming our agency, overcoming any notions of victimhood, despite the challenges many of us continue to face.

Overall Positive Voices paints a nuanced picture of our lives, from a medical point of view, especially as far as HIV is concerned, we are doing well and we appreciate the excellent HIV care the NHS is providing for us. However, many of us are struggling: 1 in 10 said that they had not told anyone about their HIV status other than healthcare professionals, 14% of respondents experienced discrimination in the NHS in the past 12 months. Mental health problems are reported by half of people living with HIV, twice the rate of the general public. Peer support is recognised as vital for tackling isolation and maintaining wellbeing, yet it remains underfunded and often unavailable to those of us in rural areas, where staggering levels of loneliness were reported.

What became clear, as we listened to each other’s stories and looked at how they illuminated the data that came from Positive Voices, is that the biggest challenges we face are rooted in negative attitudes and misconceptions around HIV. HIV is no longer a death sentence: with access to treatment, care and support we can live healthy and productive lives. Moreover, when we are on treatment and the virus is undetectable there is zero risk of sexual transmission to our partners.

We have taken the first steps of producing a Changing Perceptions campaign because we want to transform how people feel and think about HIV. We know that there is lot more to do and we hope that we will continue this work. We have plans to produce some short films based on our stories, to educate our peers, to inform policy makers, and to inform and challenge those who still discriminate against us in the NHS, and in the general public.

Another important lesson I gained from this process is how healing and therapeutic collective peer engagement can be. As we examined, compared and reflected on our stories, as we offered each other support and gained insight in our own lives, the most inner layers of stigma, self-stigma, our negative perceptions about ourselves and our own value, started to finally dissolve. For example, a person came to the first event not having told any of their friends about having HIV, having been diagnosed for 3 years. By the end of the project not only they had talked and received support from close friends and family, they have moved on to speak at a parliamentary event and challenged policy makers to do more to address the high rates of late HIV diagnosis.

Storytelling is such an important human activity and it has been used since the most ancient times to develop learning, create insight in the diversity of human experiences, and ultimately generate compassion and reciprocal understanding. Let’s hope that we will continue to create opportunities for our stories to be heard.

I would like to acknowledge and thank every single person who responded to the survey, and especially those who shared their stories, either through the comment section in the survey, or from participating to the creation of Changing Perceptions reports. I would like to thank all the people living with HIV and peer mentors who came forward and wanted to be photographed. I would like to leave you with Gabriel’s words, one of Positively UK’s peer mentors who supported the reports:

“For me it was important to give a face and individual voice to what people usually see as only the virus. I hope the project will make people understand that there is a lot of work to be done to eradicate discrimination and address the fears and hurdles that we need to overcome once diagnosed with HIV. The cuts that I have seen across the clinics and charities that made it possible for me to carry on a dignified life, are now limiting access to vital support. I hope ‘Changing Perceptions’ will address all the issues that we are still facing”

www.changingperceptions.co.uk 

A special thanks to Viiv and Gilead for supporting Changing Perceptions


GayTalk at Kew Gardens

Thursday, October 11th, 2018

 

 Join Chris and the boys for a day out at London’s largest UNESCO World Heritage Site – the Royal Botanic Gardens!


Annual General Meeting 2018

Tuesday, October 2nd, 2018

Positively UK’s next Annual General Meeting has been moved to 30th October 2018.

We invite our peer mentors, volunteers and service users to join the discussion on:

  • Successes and challenges and financial review of the last year
  • Appointment of auditors
  • Election of Trustees and Chair
  • Moving forward: Strategy 2018 – 2023


The 4th ‘90’ – What is it?

Sunday, September 30th, 2018

Our Project 100 Trainer and Coordinator James Morris reflects on what quality of life for people living with HIV after attending the International HIV/AIDS conference in Amsterdam

James Morris

As an HIV positive person, attending my first International HIV/AIDS conference, I was astounded by the number of workshops, sessions, stalls, people, stands, organisations… it was an overwhelming experience to begin with.
Part of me finding my feet was to look through the sessions and make decisions around where I attended. I saw a session that really piqued my interest:

‘In search of the fourth 90: Exploring and defining what quality of life means for communities and strategizing how we get there.’

This really resonated with me, for multiple reasons. Having been diagnosed, and now on medication and undetectable, I have been more aware of my wider wellbeing, and what quality of life means to me. With the work that I do as Project Coordinator of Project 100, the idea of quality of life and wellbeing feature heavily in the work we do as a Project. Both Mentors and Mentees have the opportunity and the skills to increase their wellbeing and focus more on their quality of life once the medical aspect of the virus is managed.

The session really explored in depth the concept of what the fourth 90 might be; there was great discussion around what this looked like for individuals, and how does this change with all of the variables present in our diverse lives; socio-economic circumstance, other health conditions, country of residence, ethnicity, social groups, family and lots and lots of other aspects that can and do vary person to person.

This really came to the forefront as we broke into working groups. The section that I worked on with others, was around what kind of aspects make up the fourth 90, what variables are there, and how can the fourth 90 be measured?
I had the privilege of supporting the group map this out, and we engaged in thought-provoking discussion. The real take-away for me was exploring how; how do we measure something as individualistic as quality of life? We discussed what made up quality of life, and then looked at the varying measurement tools available to us currently and how we might go about creating a new tool to achieve this outcome.

This session really began the discussion around our next step as HIV positive people. With the UK almost achieving the three ‘90’ targets: 90% of people living with HIV diagnosed; 90% of them on medication; 90% of them undetectable. This now paves the way for us to begin looking beyond diagnosis and medication, and to our future; collectively and individually. What is your quality of life? What tools, skills or resources do you have to strive towards a greater quality of life? For me, I will continue to strive for a better quality of life, for myself.

 

by James Morris, Project 100 Coordinator

@Jaroundtheworld 

 


Take Control, Learn, Connect!

Tuesday, September 25th, 2018

Recently Diagnosed Workshop

by Ewan Summersbey

Since I started working at Positively UK, I think one of the most rewarding pieces of work I’ve done is to be part of the team that delivers our Recently Diagnosed Workshop. I’ve been living with HIV for twelve years. It’s easy for me to forget the feelings of shock, fear, disbelief and confusion that often come with being told that you have HIV.

Working with people to help them come to terms with their HIV diagnosis and know that, in 2018, it’s all about living with HIV, is a privilege. It’s true that being on treatment means that you really can live as long and as healthily as someone that doesn’t have HIV. It’s true that having an undetectable viral load mean you can’t pass HIV on. However, none of that means that when you first find out, you won’t have lots of very different and sometimes difficult emotions. You will, and that’s natural.

That’s why we do workshops for people that have recently found out that they are living with HIV. The workshops are always facilitated by people living with HIV. You don’t have to explain to us about having HIV. We know what it’s like, even if our personal experiences are different to yours. Taking the time to work out your emotions is important. We spend time talking about what your diagnosis has meant for you. We explore what telling other people about your HIV really means. Lots of people come with the question, “Do I have to tell other people?”. We work that out with you. We look at your treatment and how to manage it. Some of our staff and volunteers are now treatment advocates, so we can answer lots of your questions. We even talk a bit about sex and relationships!

We call the Workshop ‘Take Control, Learn, Connect’. It’s a perfect name because we want you to be in control of your HIV and not the other way round. We hope that you will learn both in terms of information and in terms of tips. Perhaps most importantly, we want you to connect. Connection is so important. Some people with HIV end up feeling isolated. This workshop is just one way to break the isolation. In fact, we offer participants to be part of a WhatsApp group just for the people that attended their workshop. Many participants take up that offer and have both given and received support through it. One group we worked with recently now meet socially on a regular basis. True new friendships have been formed, and that’s been great to watch.

If you wonder if a Recently Diagnosed Workshop is for you, this is what some previous participants have said:

‘I often doubt myself, but to hear you say that you believe I’ve got this, gives me a fire and fight to be even more determined to make this work for me!’

‘A massive thank you for everything the Positively UK team did for me over the weekend, it was truly life-changing and I have left the weekend feeling completely inspired and motivated to continue to hit my goals.’

So if you’ve been diagnosed any time in the last three years and feel like you need some support, why not come along? I know I speak on behalf of the delivery team when I say we’d love to meet you and help you to take control of your HIV, and hopefully make some life long connections.

The workshop will take place on 13th and 14th October at Positively UK. Please reserve your place at info@positivelyuk.org or 02077130444. Reasonable travel expenses will be covered. 


The Pregnancy Journey Workshop

Saturday, September 15th, 2018

Being HIV positive shouldn’t stop women who want to, to be parents. With good treatment, care and support, women with HIV can expect to have a joyous pregnancy and parenthood just like any other person.

Despite this, many women may have doubts and/or questions about the implications of having HIV and becoming a parent. This is why we are running a one day Pregnancy Journey workshop, led by our mentor mothers – women who have been through pregnancy while being HIV positive – and with the participation of doctors and midwives, to support women who would like to know up-to-date information on HIV, pregnancy and parenthood.

 

On the day we will cover:

  • Pre-Conception: things to consider before getting pregnant, how to conceive safely, communicating with partners
  • Pregnancy: what happens during pregnancy, HIV treatment and the baby
  • Delivery: the options available, how to make choices
  • Aftercare: the mother’s health, your baby’s health, breast feeding and formula milk, building a support network

 

It will be a great opportunity to meet other women with HIV who are mothers or want to be mothers.

Date: Saturday 24 November 2018

Venue: Positively UK, 345 City Road, London EC1V 1LR

Time: 10am – 5pm

Please book your place on: hrogers@positivelyuk.org 

or call 020 7713 0444

 

Lunch and Refreshments will be provided. Advance booking is required, reasonable child care costs and travel expenses will be reimbursed


September Newsletter

Friday, September 14th, 2018

Dear friends of Positively UK, please download our September newsletter.

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Our Bodies Our Rights Our Choices: Dolutegravir Access for Women

Friday, September 7th, 2018

In July 2018 six members of Positively UK flew to Amsterdam to exchange views with other 20,000 activists, policy makers, funders, medics, researchers and pharmaceutical companies attending 22nd International AIDS Conference. Read the reflections of Silvia, our CEO and a lifelong advocate for women living with HIV.


by Silvia Petretti, Interim CEO

The first thing I saw, as I walked in the RAI conference centre in Amsterdam, was a group of African women chanting and holding placards “We demand Dolutegravir for Women” “Women choose what they want” “WHO listen to women, we want DTG”. The women were singing and dancing and protesting in the typical South African style developed by the Anti-Apartheid movement.  Songs and call and response harmonies filled the atrium, women moved with graceful steps, in precise dancing rhythm demanding, and getting, attention.  They were protesting about the warning on women using Dolutegravir, issued by the World Health Organisation (WHO) in May.  Dolutegravir (DTG) is a drug which has shown high efficacy, it is well tolerated and it is has a high genetic barrier to resistance. It is widely prescribed here in the UK, I have been happily on it for a few years!

However, in May 2018 preliminary findings of a pregnancy surveillance study in Botswana, reported an increased risk of neural tube defects among babies of women who became pregnant while taking DTG-based regimens.  The study reported 4 cases of neural tube defect out of 426 infants born from women who were taking DTG while pregnant. The neural tube is the early formation of what will become the spine, and it is formed by day 28th of pregnancy. However, the findings from Botswana still need more research. They came from an observational study, and we still do not know if there could be other causes to the neural tube defects, for example lack of folic acid.  More information will be available when more data will be analysed in 2019.

Following this preliminary information, a warning was issued by the WHO about prescribing DTG to all women of childbearing age.  The warning has resulted in governments of many African countries including Uganda, Kenya, Malawi and others, to take a top down blanket decision and deny access to DTG to all women, regardless of their preferences and plans around pregnancy.  Later during the conference, we were invited to a meeting with WHO and UNAIDS with women living with HIV from all over the world to discuss access to DTG.  What many women said was that, of course, we have concerns about side effects for ourselves, and when/if we are pregnant, the effects on the unborn babies, but we are not just baby making machines! Women need to be in control, and to have access to contraception to enable choices, alongside easy to understand evidence-based information. At the meeting I heard so many women talking about the horrors of side effects from old toxic drugs, such as efavirenz, which are well known for links to depression, instable moods, difficulty sleeping, bad dreams. Despite this they are still being denied DTG, even when pregnancy is not at all on their list of things to do, as they may be too young, too old, or simply not wanting children. What women want is access to good sexual and reproductive services which include contraception and to the most effective HIV treatment.

What is concerning is the extremely high number of young women in Africa who still do not have an undetectable viral load and who would benefit incredibly from access to better ARVs.  Martha Akello, communications officer of the International Community of Women Living with HIV Eastern Africa (ICWEA,) reports that for the young women she consulted with in Uganda, who had been switched to DTG, it meant that: ‘…. their lives had greatly improved because DTG has less side effects and has offered them the chance to live their lives in full once again, being able to work and fend for their families with normalcy’. 

Going to the International AIDS Conference and being part this debate was an important reminder for me that access to high quality treatment must be integrated with promoting choices and rights. For women access to ARVs goes hand in hand with advances in Sexual and Reproductive Health and Rights: our bodies our rights our choices!

WHO recommends that women of childbearing potential should receive dolutegravir if they have access to consistent and reliable contraception, but to ensure access to dolutegravir in practice, integration of sexual and reproductive health programmes and HIV programmes needs to be greatly improved.

More on this topic:

WHO Update on antiretroviral regimens and on early infant diagnosis of HIV

Dolutegravir-based ART recommended for all – if reliable contraception is available 

Giving HIV positive women dolutegravir way to go

 

22nd International AIDS Conference (AIDS 2018) Amsterdam, Netherlands.
Copyright: Marten van Dijl / IAS
Photo shows: At the conference: a demonstration asks for WHO to make DTS available for women