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


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.

You can keep up-to-date with all of your news and events by subscribing to our free newsletter.

To subscribe please enter your details using the form on the main newsletter page.


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


Inspired by the Activists of the International AIDS Conference. Nothing about us, without us

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 David, a young HIV activist and peer mentor.


By David KingPeer Involvement and Volunteer Coordinator

The International AIDS society conference is the largest medical conference in the world. With over 20,000 delegates, speakers, funders and other groups attending. The scale of the event and the breath of people who come from all over the world is astounding. However, even more astounding to me was the lifeblood of activism which flows through the entire gathering. And it usually works in a way that disrupts and challenges how the conference functions.

IAS is unique in the world of conferences in that any activist wishing to protest any session at the conference, who comes up to the stage in protest, under the rules, is to be given the microphone and a chance to express their opinion for three minutes. No matter who is presenting on the stage. I witnessed President Bill Clinton, a juggernaut of global politics, forced to stand down and listen as a group of protestors came to the stage to protest the decision to host the next conference in Oakland, California in 2020. Throughout the conference key players are often challenged and held to account by people in our communities for their actions or inactions.

For myself, as a person living with HIV, to know that in the largest global conference about us, I can come to the stage and call out powerful figures who are not putting their money where their mouth is, was very empowering. I would not say that I found our voices to be of equal weight at the conference as influential doctors, researchers or pharmaceutical companies. The level of community engagement, and the voices of us living with HIV, often seemed tokenistic or an afterthought. But we have a place at a table, and respect to be heard out. It will require us to work together to make demands that represent us, but the foundations are there to make the most powerful people in the room listen to us. And maybe for us, people living with HIV, to understand the power we can have in shaping the micro and macro response to HIV, is greater than we perhaps realise.

I took part in two marches, linked to the conference, while I was there in Amsterdam. The first was organised by the ‘towards zero together’ campaign. The march had three main demands, to call for zero HIV criminalisation, zero stigma and zero deaths by eliminating barriers to treatment. In attendance were hundreds of community figures, people living with HIV and delegates from the conference. The atmosphere was palpable, the speeches excellent and it was empowering to walk through the streets of Amsterdam, with my colleagues, wearing my ‘Proudly Undetectable’ t-shirt, which I obtained at Pride in London earlier in the year. The second march was to highlight the effects of the law, globally, on sex workers and how HIV can intersect with this. Sex workers living with HIV, around the world face inflated risks of extortion and violence, discrimination under the law, and poorer access to treatments. More needs to be done to work with them and other key populations so that we can all live dignified lives with equal protections.

This power of activism at the conference was made apparent to me by the legendary South African activist group, the treatment action campaign and their bad pharma tour. A huge part of the conference is the exhibitor’s hall, where pharmaceutical companies, medical equipment manufactures etc have extravagant, expensive stands, exhibiting their products. Every day at 1pm, TAC collected everyone interested in attending and got them onto an imaginary tour bus. The ‘bus’ then drove into the exhibitor’s hall, causing a ruckus, shouting the words to the nursery rhyme ‘the wheels on the bus go round and round…’ before ‘driving’ up to some of the biggest names in the industry, Gilead, MSC, Roche etc. The staff at the booth would flee as the bus stopped, with participants flooding the stall. The TAC activists would proceed to climb up onto the stall with a megaphone and explain different examples of pharmaceutical greed and unethical practice, to the crowd and everyone in listening difference. For me, it was an incredible way to challenge these companies and some of the ways in which they work against people living with HIV. It reminded me that we are not servants to the powerful forces that affect the lives of people living with HIV globally, that we can challenge the powerful and hold them to account.

“Nothing about us, without us.” Is a phrase that is ingrained in me when I think about any discussion of people living with HIV, all of us must have a place at the table. Decisions about us should never be made without our representative’s present. And that is mine, and many others indignation when we talk about the next conference, in Oakland/San Fransisco in 2020.

Many of the most inspirational people I met at the conference were sex workers and injection drug users, living with HIV, who had the courage to speak openly and represent their communities. When we talk about the global response to HIV, we talk about the most vulnerable populations, Key populations, two of which are sex workers and Injection drug users. Those brave, inspirational, men and women, and millions of others living with HIV, cannot attend the next conference in America. Both groups are barred from entry into the United States. It is wrong, that the largest event in the world, where major policy decisions, deals and the sharing of scientific knowledge about us, people living with HIV, could be hosted in a place where we cannot attend. Where our voices cannot be heard, and we do not have a place at the table.

Nothing about us, without us. In the last 30+ years, globally, activists have put their lives on the line and in some cases died, so that people like me and you, living with HIV, are respected and involved in scientific research, policy decisions and the global response. It’s not right to host the IAS conference in a place where our brothers and sisters cannot attend, and have their voices heard.

I was inspired by the activism that I witnessed at IAS. I was reminded of the power we have as people living with HIV to influence decisions that impact our lives.  I will harness that and do what I can to challenge and boycott the hosting of the next conference in the united states.

I asked myself, how would I feel if I was unable to attend this conference, due to a simple fact about my life, which is nobody else’s business. That I was ineligible to be part of the largest global gathering of people like myself. To have my voice stifled and my chair at the table pulled out from under me.

Now I ask you, how would you feel?

Nothing about us, without us.

 


Join this year’s largest HIV community event and support people living with HIV in times of crisis!

Wednesday, September 5th, 2018

On World AIDS Day – 1st December – friends and supporters of Positively UK will gather at Victoria Park for a great 5k or 10k run. This year’s fundraising is dedicated to our Hardship Support Scheme that provides financial support to help people living with HIV in times of crisis.

A crisis may be linked to mental breakdown, cut in welfare benefits, accident, redundancy, homelessness or other personal circumstances, but it always poses threats to the health and wellbeing of a person. Limited access to good nutrition or inadequate housing can cause significant deterioration for people living with HIV and their dependants. Along with our peer-led support, Positively UK offers welfare advise and financial support in extreme circumstances. Our hardship payments act as a safety net to cover day-to-day living costs.

Join the Red Run here.

Raise funds for people in hardship here.


Our annual Between The Sheets event is back on 15th September 2018!

Wednesday, September 5th, 2018

This year’s edition will be joined by the charismatic Dr Mapara who will provide a fresh glimpse of the anatomy of female pleasure. MAC Cosmetics make up artists will once again boost our self-love by adding a little sparkle to our looks. Sh! Store – the award-winning erotic emporium – will feature products and create a liberating space for us to explore our intimate side away from pressure or stereotypes. We will start at 11:00 with a peer-led exploration of  R.E.S.P.E.C.T. (Relationships, Empowerment, Sex, Pleasure, Emotions, Connection, Trust).

(more…)


The Catwalk for Power at the International AIDS Conference

Wednesday, July 18th, 2018

The Catwalk for Power, Resilience and Hope – an initiative started by women with HIV in London for International Women’s Day 2018– is going global next week with a workshop at The International AIDS Conference, in  Amsterdam. Here is Laura’s account of why the Catwalk for Power is important.

After diagnosis, I lost my confidence and self-esteem. I couldn’t get myself to think I deserved the best in life.

Being part of the Catwalk  for Power was transformative, it was organic; it was us, women living with HIV, everyday women who can often be overwhelmed with social inequalities and intersections that can make us underestimate our abilities, who lead and created the event. Everyday women who sometimes forget how much skills and resources we have as individuals and as a community,

When we started with the idea of the Catwalk for Power, we had no clue how exactly it was going to pan out, as we had no blueprint and we were struggling with finances. But we used our life experiences as individuals, mothers, professionals, peers, self-managers, activists etc., as we went on from organising one workshop to the other.

We all had journeys of self- discovery, finding out what we had forgotten we could do, what we didn’t know we could do, or reaffirming what we knew we could do. Using validation, and encouragement, we gave each of us a chance to participate and make decisions and contribute according to our abilities, taking on bigger roles, building confidence. Week after week, we were like flower buds opening up a little bit more

We learnt, we socialized we had fun, we challenged each other and we supported each other. Naturally we had moments of doubt and dips in confidence, but we found innovative and creative ways around them. As always, we were resilient and determined to self-care, look after ourselves, and see ourselves as deserving women, who often put other people first.

We had a variety of workshops to give each woman a choice and a chance to express herself the best way she could: we did hand crafts, watched films, discussed and found spaces to play, to be ourselves, ease off.

On the 7th of March 2018, the day of the Catwalk, for the first time since I was diagnosed I felt pride! Pride at being a woman living with HIV and having the opportunity to be part of this incredible group of resilient women who created a valuable safe place. By creating the Catwalk, we invented a space where to meet each other, search, find, be creative and empower ourselves,

We all strutted our stuff on the catwalk that day, even those who had no plans of walking until then, did: because at that moment, we realized that we are all deserving. We are already enough as we are.  We are truly worthy.

Now, I will be part of the delegation taking the Catwalk for Power to the global scene at the International AIDS Conference in  Amsterdam – and yes you can still support us by donating here: https://www.justgiving.com/crowdfunding/catwalk4power. This is something that a year ago I would not have believed I could do… I am now looking forward to the future, full of possibilities, my personal life, career and outlook in life have changed because I have finally started to believe I truly deserve it … this is what the Catwalk for Power has been about for me: we didn’t wait for anyone; we did it ourselves by ourselves. We created an enabling environment as women living with HIV to remind ourselves of who we really are, finding the power within ourselves and our community as women!

What we achieved was a big lesson for me about the power of grassroots, taking ownership, creativity, community, sustainable women spaces, collective will and partnerships.

WE ARE HERE!

Bakita, the activist and young poet who introduced us on the night said; “WE ARE TAKING UP SPACE” because THE POWER IS OURS

Commissioners and providers of services, policy makers and all other stakeholders need to work in partnership with women living with HIV to actively support and fund sustainable women centred peer spaces. These spaces are essential in building women’s leadership and capacity to effectively participate in the decisions affecting us, and in enabling us to live well with HIV 

The Catwalk of Power Workshop  

22nd International AIDS Conference – Amsterdam

Tuesday 24th July

11:00 am 12:30 pm

Global Village Youth Pavilion

 

The Catwalk for Power is a collaborative initiative supported by Act Up London and Positively UK.

 

 

 


Proudly Undetectable

Friday, July 13th, 2018

 

Positively UK, staff, service users, peer mentors and associates strutted through the streets of central London on Saturday 7th July for Pride in London. David – Peer youth worker,  organiser of Positively UK at Pride in London this year, tells us how it went and why Pride still matters to us.

 

 

It was a bright sunny day, perhaps too much so, but armed with sun screen and litres of water we congregated before the march in Regents Park. Everyone was in bright spirits and it was great to see such a mix of people involved. There were staff, peer mentors, service users, family and friends, turning up one by one. We put on a bunch of Positively UK t-shirts, pride coloured face paints, copious lashings of glitter and soaked up the great atmosphere of the event, as we got ready. We unfurled our Positively UK flags, and our banner that we would carry throughout the march which proclaimed: ‘Proudly Undetectable.’

We marched from Park Crescent, Regents Park, through the 1.5-mile route ending in Trafalgar square. The streets were lined with a crowd, estimated at close to a million supporters, cheering, waving and giving support. We made a statement that HIV is not over in 2018, and we do not sit quietly, but march through the streets.

The theme of pride this year was PRIDE MATTERS. Today in the UK, (mostly) equal rights do not mean real equality and justice for all. Hate crimes towards LGBT+ people, on the streets of London, have doubled in the last 5 years. Still today 75% of LGBT+ people fear showing affection in public for fear of retribution and violence. In Northern Ireland there is still heavy discrimination with same sex marriage being outlawed. Around the world it is still illegal in 72 countries to engage in same sex relations, and in 10 of those it can carry the death sentence. Transgender individuals around the world face truly inhumane levels of violence and discrimination. Trans people have the highest level of HIV, with abysmal access to health services including HIV prevention, testing, treatment, and care. We have a long way to go.

On the march, passing the cheering crowds I was pondering something to myself. If you would have asked me in my first few years post-diagnosis, if I would walk with my head held high, wearing a t-shirt saying, ‘proudly undetectable’, holding a banner with the same text, I would have said ABSOLUTELY  NOT. However, times change. I was not the young man, terrified by my diagnosis a few years ago. I am proud of what I have achieved through volunteering in peer support and subsequently working with Positively UK.

So, for myself personally It was a milestone on my journey living with HIV. I have a choice, when looking at my diagnosis, to live in pride or in shame.

Marching at Pride as an openly HIV positive person reinforced in myself the belief that the only shame in living with HIV, is that which society and others place on us. We write our own stories, and last Saturday I put my shame to rest.

 

 

 


Hearing Your Views, Shaping Our Direction

Tuesday, July 10th, 2018

We are starting the process of renewing our five-year strategy and want to ensure that we hear the views of everyone we work with, including: people living with HIV who use our services,   our volunteers and  trained peer mentors, partner organisations and clinics across the UK.

We would also like to hear from anyone living with HIV in the UK, who hasn’t used our services or participated in our training yet,  but may want to get involved in the future.

 

We want to know what you think we do well and what we should be doing as we move forwards.

 

This survey has been developed to provide initial feedback. We will follow this consultation by holding focus groups before drafting our new strategy at the end of the summer.

We have already conducted a workshop with our staff and Trustees to find out what matters most to them about the organisation and our work. We asked what they thought matters most to those who access support from us, what makes us different, unique, or that we do better than anyone else and finally what work they think we should be doing moving forwards.

We would now like to ask you those same questions so that we have a sense of what is most important to you .

 

Please take a few minutes to complete our short survey: https://www.surveymonkey.co.uk/r/5YStrategy

Deadline for completing the survey is 12th August 2018

 

 

 


We’re Recruiting a Gay Men’s Programme Co-ordinator

Friday, June 29th, 2018

 

SALARY c £26,000 per annum pro rata, depending on experience
HOURS 28 hours per week
DURATION 1 Year fixed term contract

Gay Men’s Programme Co-ordinator:

We are recruiting a programme co-ordinator to build on our highly successful work with gay and bisexual men. This will include provision of one-to-one case work support, groups and workshops for gay and bisexual men living with HIV, managing a team of volunteer peer mentors, and strengthening links and referral pathways with other agencies. The Gay Men’s Co-ordinator is an exciting role at Positively UK, and coincides with the development of our new 5-year strategy, which will provide the post holder with the potential to shape the future development of the project.

Successful candidates will be:

  • Diagnosed, and living with HIV, for at least two years
  • Identify as gay or bisexual
  • A self-starter, able to work as part of a team and under own supervision
  • Experienced in providing support to people living with HIV or other vulnerable groups
  • Experienced in group facilitation

For an informal conversation about the role contact:

Garry Brough at Positively UK on 020 7713 0444

For an application pack:

Contact Nickesha on: 020 7713 0444, email: info@positivelyuk.org

Final date for applications is 9am on Thursday 12 July

Interviews will be held Tuesday 17 July

 


We’re Recruiting a Fundraising & Communication Manager

Wednesday, June 6th, 2018

Are you looking for an exciting opportunity to combine your fundraising and communications skills?

Want to make a positive difference to the lives of others?

 

SALARY £33,000 FTE (28 hours)
HOURS 28 hours per week, 4 Days Flexible Working Hours
WORKING DAYS Negotiable

Fundraising & Communications Manager Role:

Based in our office in Islington, the successful candidate will support the implementation of the charity’s Fundraising and Communications strategies. They will lead on income generation from corporate partners, charitable trusts and individual giving, while raising the external profile of the charity through our website, newsletters, social media and published materials.

Successful candidates will be:

  • Experienced in fundraising within the voluntary sector, able to both maintain and develop relationships with relevant partners
  • An excellent communicator with the ability to address the diverse audiences the role requires
  • A self-starter, able to work both independently and as part of the wider staff team

For an informal chat, contact:

Garry Brough or Silvia Petretti at Positively UK on 020 7713 0444

For an application pack:

Contact Nickesha on: 020 7713 0444, email: ncampbell@positivelyuk.org

Final date for applications: 10am on Friday 22 June

Interviews will be held on Wednesday 27 June

 


International Women’s Day – The Power is Ours

Thursday, March 8th, 2018

Ahead of International Women’s Day, on the 7th March, Positively UK’s Women’s Room and Act Up Women, held a spectacular event to celebrate the collective and individual power of women with HIV and to highlight the importance of Women Centred Peer Support services. The event featured collective poetry by women with HIV, the young activist and poet Bakita, and a mind-blowing Fashion Runaway where over 20 women strutted with pride, confidence and humour. Here is a summary of the welcoming speech by Positively UK’s Deputy CEO Silvia Petretti.

We are here to mark International Women’s Day, and it is important to remember the history behind what we are celebrating. International Women’s day was set in remembrance of strikes women workers set up in St Petersburg in Russia in 1917. Women were asking for better pay and better working conditions. It was the escalation of those strikes the brought about the October Revolution in Russia. One of the biggest power shifts in history. We must remember that as women we have a very long history of fighting for justice.

This fashion show is a humongous step for us as women with HIV, as openness about HIV can lead to being harshly judged, rejected, and even being at the receiving end of violence. The Catwalk is the fruit of over two months of workshops. We discussed, we wrote poetry, we watched films on the history of HIV activism, we stitched and we bitched, while sewing our outfits, we spoke to each other about women and leadership, we laughed and we argued! In this way we created our Fashion Show.

A few facts on women and HIV:

  • Globally Women are the largest group affected by HIV, 18 million of us have the virus
  • In the UK we are the second largest group with HIV 31%, although you rarely hear about us
  • 80% of women living with HIV in the UK are Black or from other ethnic minority groups
  • Poverty, and disproportional impact of welfare cuts create a huge burden on our lives
  • We experience racism and hostility towards migrants

Moreover, there is a strong link between HIV and violence against women. A study in Homerton hospital in Hackney reported a 52% prevalence of Intimate Partner Violence amongst women with HIV. More than double that the general population.

When we have discussions in our groups, as we support women to develop a better understanding of violence against women in all its forms – not just a black eye – but emotional and financial violence, coercion and control. If we ask for a show of hands on average in a group of 22 women 18 will put their hands up to say that they have experienced some form of violence.

But, there is also some great news, and in preparation to this event women wanted for us to focus on some of the good news.

Because of effective treatment for HIV, by taking pills religiously every day, we can expect to live long lives. Moreover we now have 100% scientific evidence that when we take HIV treatment the virus is controlled we do not transmit HIV. It is called U=U: Undetectable equals untransmittable.

As women with HIV we really want everyone to know this. So next time you have an informal chat with a friend, instead of talking about the weather… maybe you could say: have you heard of U=U? Do you know that people with HIV who are on medications cannot transmit HIV?

However, I need to add a caveat on my enthusiasm for HIV treatment, because I know that the pills that I have been taking for the past 18 years, to keep me alive, have not been studied on my body. A huge issue for us as women with HIV is what we call the Gender Gap in research. On average Randomised Clinical Trials, which are used to research the efficacy and safety of ARV’s, enrol only between 15% to 20% of women. No wonder many of us struggle with side effects. According to PubMed: out of an average of 15,000 research papers published on HIV every year only about 500 have women in the title. I can guarantee that most of those are about pregnancy, because as you know… as women, we only matter when we have babies!

Today we are having a Catwalk of Power because we want to challenge the notion that women with HIV are victims. We are not victims. From the beginning of the epidemics women with HIV have been leaders and agents of change. Positively UK was set in 1987, as Positively Women, by two women living with HIV: Jayne and Sheila, who realised there were no services that met their needs – as most services at the time focussed on gay men. Sheila and Jayne set up the ethos of peer support which is still our foundation at Positively UK 31 years later. By creating Positively Women, which later became Positively UK, Jayne and Sheila set up a very profound strong hold of power: collective power. And it is only through collective power that societal changes have happened in history.

We are having a Catwalk of Resistance because if we didn’t resist, we wouldn’t be alive, given the challenges we face daily as women with HIV. Also, the creative process behind this catwalk is in itself a vital act of resistance.

Finally, we are having a Catwalk of Hope because through profound hope we sustain the vision that together we can create a world where women with HIV live with dignity and respect and where we can all share of all aspects of power: power to make decisions, economic power, political power.

The power is ours! THE POWER IS OURS!

This event was only possible because of the solidarity, generosity love and hard work of some incredible people huge thanks to:

Act Up Women who funded the costs of the workshops and the event, especially Mare Tralla and Donna Riddington who co-facilitated all the workshops and donated their expertise, passion and humour as feminist artists. Please check Act Up’s website if you would like to get involved in Direct Action to address HIV and health injustice.

Madam Storm got us all the strutting power, and more, we are all changed women after learning catwalk skills form her. She is a charismatic coach, performer, international dominatrix, who has as a mission in life to unlock women’s potential. If you want to increase confidence in the shortest time possible check her website for Strut Masterclasses. You can follow her on Instagram @MadamStorm

The poet and activist Bakita stunned the room with her words of power. Follow her on twitter @BakitaKK

The British born Bajan poet Dorothea Smartt who enabled us to develop our collective poem.

Thank you to The Big Lottery who funds Positively UK Women’s Project.

Thank you to MAC Makeup and especially Abigail Rowley and her team for always supporting our events and making us all look even more fabulous on the Catwalk!

And of course, the biggest thank you to all the 25 women with HIV who strutted for International Women’s Day 2018 with all their power, and stated: I am here. We are here: The Power is Ours!

written by Silvia Petretti


Strutting For Power with Madam Storm

Monday, March 5th, 2018

 

“I AM HERE!” with this simple and powerful affirmation Madam Storm started our final dress rehearsal in preparation of our International Women’s Day event: ‘The Catwalk of Power Resistance and Hope’ on 7th March.

Madam Storm is an experienced performer, coach and international dominatrix, who has as a mission in life to work with women so that they can unlock their power. We reached out for her support as we were getting closer to the date of our event. The Catwalk of Power is the first time that a collective of women with HIV from Positively UK Women’s Room support group has done something so incredibly public.

On the 7th of March we will be performing a fashion show with a message, to remind the world that HIV affects women in the UK, and that in spite of great hardship, poverty, and intimate partner violence, we experience, women with HIV are beautiful, powerful and agents of change in the response to HIV and we are fierce warriors in combatting stigma.

We invited Madam Storm to our group because most of us have never walked on a catwalk or performed in public and we were obviously very nervous and really needed to super boost our confidence.
Madam Storm worked her magic, starting by making us create simple and empowering affirmations, such as: “I am beautiful” “I am cool” “I am unique” “I am free”. At the beginning of the workshop most of us were walking looking at our feet, seriously intimidated and scared. By the end we were walking tall, swaying our hips, stopping with a hand on our waist and a cheeky smile!

I didn’t know I could learn so much about Power and overcoming Fear just by taking a few steps in a room.

 

 

I have been working in support groups for almost 20 years, and have run innumerable sessions on self-confidence and self-esteem, and I had never seen such a palpable change in such a short time, just by saying with our whole being, with our bodies and souls “I am here. We are here.”

Today as I look at the feedback forms from yesterday I can see that all the women in the room, who spanned from women in their 20’s to women in their 70’s, shared my feelings:

“It was engaging, dynamic, and I learnt that I am beautiful, free and confident!”

“I will use the skills learnt here in the workplace, at home, in social gathering and church!”

The Catwalk of Power Resistance and hope is on:
Wednesday 7th March
at
Brixton East, 100 Barrington Road, London SW9 7NS

Read more about Madam Storm on her website here

The Catwalk of Power has been lead, organised and produced by women with HIV with support and solidarity from a group of activists and artists from Act Up Women


Gay & Bisexual Men’s Project Evaluation Report

Tuesday, January 16th, 2018

The evaluation’s key findings included:

  • The project improved people’s ability to live with HIV as a chronic condition. For most, reported self-satisfaction with their life increased markedly after accessing the services
  • Provision of information by the project was a key component in helping many to deal with their emotional challenges and accept their status, this being gained more through trust in others lived experience, rather than scientific or medical knowledge
  • Social support provided by the Recently Diagnosed workshop, the GayTalk group and social networking stopped participants from feeling “cut-off” and helped re-integrate them back into society
  • Project services helped those impacted by HIV stigma to normalize HIV and feel “it’s ok to be HIV positive”

 

This report presents the findings of the evaluation of Positively UK’s Gay & Bisexual Men’s Project.

The project was set up to provide support to gay and bisexual men living with HIV, a group who are vulnerable to stigmatization, isolation and lower levels of wellbeing. The project goal was to empower service users to successfully transition to effective self-management and independent living with HIV.

The project, commencing in June 2015, provides a range of one to one and group support interventions, delivered through a Gay Men’s Project Co-ordinator and supported by a team of volunteer peer mentors.

The evaluation was carried out at the end of year two of the three-year project, after 250 men had been supported. It was informed by quantitative and qualitative data, including an online survey completed by over 100 project participants.

Although HIV was found to be the main entry point into the services, there were numerous support needs beyond HIV. Many participants expressed mental health, social and economic needs that were either exacerbated by HIV or affected their ability to live with the condition.

You can view and save the report as a PDF here


A Catwalk for Power, Resistance and Hope

Wednesday, January 10th, 2018

A Catwalk for Power, Resilience and Hope: Positive Women’s Fashion Show

 

We are extremely excited to announce a collaboration between Act Up Women and the Women’s Room – Positively UK’s peer lead support group for women with HIV to organise an event for International Women’s Day 2018. We are planning to create a Positive Women Fashion Show and Party.

The aim of the event is to increase awareness of how HIV affects women in the UK, and to create an opportunity to portray women with HIV as strong, creative and resilient, and not as ‘victims’; it will educate and entertain, offer a platform to celebrate the collective and individual power of women with HIV, and highlight the essential role of women only peer lead space.

We will have a series of planning meetings and workshops for women to choose and design how the event will run, with music, spoken word and a ‘Catwalk for Power, Resistance and Hope’ Women with HIV will be at the centre and leadership of the planning, if they are not open about their status, they will also have the option of having someone else walk on their behalf, or create a mask/disguise. Women with HIV can also contribute by working behind the scenes with other organisational/creative roles.

The Positive Women Fashion Show planning workshops will be held at Positively UK with the support of ACT UP Women who will provide refreshments, travel expenses and their expertise as artists and activists – a crèche will also be available on the day.

This event is for all women with HIV in our diversity, and our allies: some of us have been positive for a long time; others are recently diagnosed. We have different desires, different pasts and futures, different ways of being sexual.

We are married, single, cohabiting, mothers, daughters, heterosexual, bisexual, trans and queer.

We are at different ages and stages in our lives; we are different races and different classes and come from different parts of the world.

Upcoming Dates

  • Wednesday 10 January — Women’s Room taster workshop session Beading and storytelling, from 5pm to 8pm
  • Thursday 18 January — 6pm to 8pm planning workshop
  • Saturday 27 January — Screening of At Up New York film: How to Survive a Plague with Q&A and Leadership Skills Workshop for women with HIV 12pm to 5pm lead by Angelina Namiba and Laura
  • Thursday 08 February — Poetry for Activism workshop with Dorothea Smartt 5pm to 8pm
  • Thursday 22 February — 6pm to 8pm planning workshop
  • Sunday 04 March — Dress Rehearsal 12pm to 5pm
  • Wednesday 07 March — Positive Women Fashion Show and Fabulous Party (Venue TBC)

Please contact speretti@positivelyuk.org for more information


My Pregnancy Journey after 40

Thursday, January 4th, 2018

In this blog, Helen shares her experience of being a mother and having a baby after 40 whilst being HIV positive.

 

My most recent pregnancy journey was in 2013/2014. I was then a 43-year-old women who never expected to become pregnant again in my forties. I honestly thought things had stopped working in that department. So, you can imagine the shock of finding out you’re having a baby considering my age. All my other children were young adults and I was expecting to become a granny at some point.

Most people were telling me to think wisely about having a baby ay my age. I’m so glad that I never listened to them. Having my youngest child was the best decision of my life.

As an experienced mother who had already had children whilst being positive the worries around HIV were not even a consideration. My main worry was my blood pressure and age. HIV just didn’t enter my mind.

The great thing nowadays is that you no longer need to have an elected caesarean section if there are no other complications apart from HIV. You can even have a natural birth if you have previously had a c-section. This is called a V BAC. If you have other complications you may still need another c-section.

I think my other biggest worry was how am I going to cope financially. Money is very often a consideration when you are faced with the prospect of having a child.

I have learnt that you should never let finances put you off having a baby. Life is precious.

 

Always remember that not all the healthcare professionals will automatically know that you are positive. I had a bad experience from a community midwife asking me why I wasn’t breastfeeding and what is that medication you are giving to your baby. She was very rude and judgemental.

When I told her, I was positive she wrote it on my notes and then had the cheek to phone me later that day asking if I could erase it from my notes, (I left it there). I think she asked a colleague and was told that she should not have done that so she was trying to cover herself. They never sent her to me again as I complained about her bizarre attitude.

If you are expecting visitors to the hospital once you have given birth make sure that you make the team aware that maybe not everyone will know about your HIV status. Ask for medication to be administered for yourself and your baby after visiting hours.

Let’s face it, hospitals are depressing places and you shouldn’t be in there that long. New mums will be apprehensive about feeding and changing the baby. Even little things like how to lay the baby down in the cot seems daunting. Years ago, you could stay in hospital for seven days and they would show you everything. This is no longer the case and they get you out as soon as possible.

Make sure you ask to be shown what to do, bring in your baby clothes, nappies etc.

Positive mums do get given free formula milk in the hospital but have some stocked up ready at home alongside a steriliser (steam ones are the best in my opinion.)

 

Its normal to feel very low a few days after giving birth. This is called the baby blues. A time when your hormones go haywire and changes are occurring after the birth. The milk will come in and can be very painful but this will soon pass and if you are not breastfeeding it will subside quickly. A few breast pads will be useful even if you don’t plan on breastfeeding as you will still have some leakage.

Remember that if the baby keeps crying there is usually a reason, wet nappy, sore tummy, scared, hungry, uncomfortable, too hot, too cold, but most importantly they might just want a cuddle.

If you don’t have any family or friends visiting this can also be a depressing time. In the next beds, you will see people bring the new mums presents and flowers. This can be annoying if you are all alone. But remember you are not alone you have the most important person next to you in their little cot.

 

Also, if you feel lonely and would like someone to be supportive you could get in touch with Positively UK Women’s Project and we could arrange for a mentor mother to be available to you, to share experiences and learn from each other.

I also used to worry about the side effects of the medication on my babies. Two of my children that I had whilst being positive are now 16 and 17. They are totally fine and have not had any complications.

So, my advice would be to not worry and enjoy the moment as it soon passes and they are grown up before you know it.

Positively UK is running a Pregnancy Journey Workshop on Saturday 20 January for women living with HIV to learn more about pregnancy, motherhood, and becoming a parent. The day will be facilitated by women living with HIV who have had babies and have been trained as Mentor Mothers, alongside a doctor and a midwife available for you to ask any questions you may have.


The Pregnancy Journey Workshop

Wednesday, December 13th, 2017

Pregnancy Journey Website - Saturday 20 January 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 20 January 2018

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

Time: 10am – 5pm

Please book your place on: hrogers@positivelyuk.org or Donyango@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