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.
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 .
Deadline for completing the survey is 12th August 2018
Thursday, November 3rd, 2016
For the first time in 20 years, the UK AIDS Memorial Quilt will be on display to the public at St Paul’s Cathedral, and then at community venues across London, to commemorate the lives of those lost to the AIDS epidemic.
Positively UK is proud to be part of the coalition of charities that have worked to display this irreplaceable piece of international social history.
Hundreds of individuals made quilt panels in memory of loved ones who had died from AIDS in the 1980s and 1990s, inspired by a global project that started in America.
The UK quilt panels will be on display at the Cathedral on 23 November, ahead of the AIDS Quilt Trail which takes place across London on the weekend of 3 and 4 December, where people can see the quilts for free at a range of community venues.
Alongside George House Trust, Terrence Higgins Trust, Positive East, The Food Chain, and Sahir House, with support from Elton John AIDS Foundation and Gilead, we hope the exhibitions will help remember those lost, raise awareness of HIV to younger generations and help find a permanent home for the UK quilt to ensure its preservation.
The Quilts, on display to coincide with World AIDS Day, reminds us how far the UK has come in the fight against HIV.
HIV no longer stops those living with the virus leading long and healthy lives – but there is still much to be done to tackle stigma, stop transmission and diagnose the 1 in 6 who are unaware they have the virus.
To get involved on social media, use the hashtag #AIDSQuiltUK
“Collectively, the quilts are part of the largest piece of community art in the world – which shows just how important they are to our social history, and how special this event is.
“Thousands of people died from AIDS here in the UK at the start of the epidemic, and displaying this quilt coming up to World AIDS Day is a way to remember them and to reflect on how far we have come since the 1980s in the fight against HIV, thanks to incredible medical advances.
“I’m delighted to support the fantastic work the coalition of charities is doing to preserve this intensely moving piece of art and encourage everyone to witness this important moment in history.”
“The Aids epidemic and the appalling number of lives taken by it was all too often portrayed in the media as being about a faceless mass of unknown people.
“In truth, of course, it was an all too large patchwork of individual stories; of real people with names and lives, with loved ones and families and careers and talents never quite allowed to reach fruition. How better to represent that than through the Aids quilt, which gives individuality back to so many people who risked becoming mere statistics?
“It is both work of art and a vital social document, and I wholeheartedly give my support to the coalition of charities and it’s ceaseless work to make sure the quilt finds the home it so richly deserves.”
Thursday, June 23rd, 2016
The national HIV support charity have chosen this focus as public awareness of the modern face of HIV has failed to catch up with the rapid developments in HIV medication over recent years. “Many people are unaware of these advances, unaware of the fact that so many of us living with HIV now have levels of the virus that are so low they are considered ‘undetectable’ and that because of this we are unable to pass the virus on to others” says Jim Fielder of Positively UK. “Many of those who seek support from us after a recent diagnosis, not only feel better physically but feel so much better in themselves, mentally, when they become undetectable.“
The charity believes raising awareness about undetectability and the effectiveness of modern HIV treatments has a huge role to play in reducing the fear of HIV, encouraging more people to get tested and reducing transmission rates.
“Of course, there are some of us for a variety of reasons for whom it is difficult or impossible to reach an undetectable viral load. Scientists are continually working to better understand why this is the case. Positively UK will continue to challenge the fear and stigma that can affect all people living with HIV and continue to make that despite the excellent medications available, people still need support in managing HIV long-term.”
Monday, December 14th, 2015
If you’re living with HIV, some of the best people to talk to are other people living with the virus. Jim Fielder, Positively UK’s Gay Men’s Support Worker talks about the value of mentoring and how this is helping gay and bisexual men living with HIV in London
With 1 in 11 gay men in London living with HIV, we probably all know someone in our social circle living with the virus. But do we know who they are and have we ever talked about it with them? The answer to that, I suspect, would be far less definitive. The invisibility of HIV still reaches deep into society and into our own community. The impact this has on the rising numbers of us that are testing positive leaves many feeling unable to talk about it with our friends and loved ones and unable to find safe spaces to explore what it means to be living with HIV in 2015.
Positively UK has been providing peer mentoring support since 1987. I’ve been running the organisation’s first dedicated gay and bisexual men’s programme since May, thanks to three years of funding from the Big Lottery. Like all our frontline staff and mentors, I’m living with HIV myself (nearly two years and counting) so I have insight into what the guys who rock up at our door are going through. Having lived through an HIV diagnosis ourselves is the essence of our approach. As one of our service users has said: “would you want swimming lessons from someone that can’t swim? Or would you prefer to talk with someone who has done the walk?”
At the heart of what we do, therefore, is training up volunteers living with HIV to provide mentoring support. Clinics and hospitals are often too busy to do much more than get people tested and onto treatment, so our growing network of peer mentors provide the practical, emotional and social support that people often need following a diagnosis. We do this in two main ways; providing one-to-one talking support over a number of sessions, and then bringing people together in our Recently Diagnosed weekend workshops and at our Gay Talk Saturday group and social events.
Gay Talk in particular is popular and well attended because it provides that safe space for the guys to meet, to share and connect – and not just around our HIV. We understand that HIV is only one part of our lives and although it can feel like taking over for a while after a diagnosis, it doesn’t define who we are. That’s why we talk about people ‘living with HIV’ rather than ‘being HIV positive’. We believe there’s a difference. I try to think of the guys walking into our groups as men first and foremost, then gay or bi men and finally as men living with HIV. This helps us to see the layers of experience and issues that the guys bring to us and how these interconnect.
This is important because an HIV diagnosis rarely happens in isolation, instead happening within a context or set of circumstances – that may be a relationship breakdown, difficulties around chemsex, problems with work or housing, challenges around accepting sexuality. Some of these issues and their underlying causes may have lain dormant or been building for years, suddenly erupting to the surface following a positive HIV test. We might need to support a recently qualified foreign student who’s visa is about to run out and he can’t face returning home for fear of HIV related discrimination and violence; or an older man diagnosed for many years, who’s long term partner has died and he’s losing their home; or a young guy who’s just moved to the big city and quickly gets himself in too deep with the chems. As gay men who may have grown up in a suffocating environment, we rightly love the freedom and the anonymity that London provides, but the city can be an unforgiving place when we hit the skids.
At Positively UK we’ve been there, so we can help you navigate through the complexities of the day to day aspects of living with HIV; whether that’s accepting a new diagnosis, help with treatment and drug adherence, sex and relationships or disclosure and talking about HIV. Most importantly we are a listening ear, someone to talk to and connect with, fostering a kind of solidarity.
This article appeared in Boyz Magazine on 26th November 2015
Monday, June 22nd, 2015
This Saturday, to promote awareness and show solidarity across everyone living with and affected by HIV, Positively UK will be marching at London LGBT Pride for the first time. The event will also mark the start of a new project supporting gay and bisexual men living with HIV in London.
For Jim Fielder, Positively UK’s new gay men’s support worker, this is his first Pride march and the first time he has been so public about his status since his diagnosis last year. ‘I believe it’s important to be open and to challenge some of the attitudes that still cause misery for many people living with HIV, including within the gay community’ says Jim. ‘I’ve been lucky. I had the confidence to get tested, get access to the latest medication and have a great support network around me. But this isn’t the case for everybody. In spite of the improvements in the treatment and care of HIV, a significant proportion of people living with HIV still report experiencing stigma and discrimination and this leads to poor physical and emotional health.’
The aim of Positively UK’s first Pride march is to show the face of HIV in 2015 and challenge the stigma people living with it still experience. One of these people is Steve who was diagnosed with HIV in 2014. Steve accesses support at Positively UK, but like many others wants to remain anonymous and won’t be joining in on Saturday. ‘Although I would love to be part of Pride, I will not be able to due to my social background. In my culture it is hardly acceptable to be gay, let alone to be gay and HIV+. I would be extremely worried and nervous that someone would see me marching on Pride day.’
‘We know that HIV stigma is a barrier for some people to get tested’ adds Jim ‘and as a quarter of people estimated to be living with HIV are unaware of their status, this is an ongoing problem. We may only be a small group marching on Saturday but we will be marching for all those people living in the shadows who still struggle to be more open about their HIV status and get access to the support they need.’
Positively UK will be marching under the theme of ‘We are Positive’ and encouraging people to tweet on the day using the hashtag #wearepositive. If you would like join them on the March please contact JFielder@positivelyuk.org or call 020 7713 0444
Saturday, June 13th, 2015
Leading peer-led HIV charity are taking a new approach in supporting people to Connect, Learn and Take Control of their HIV early in their diagnosis.
London has some of the highest rates of HIV within the UK. At the same time the capital is also one of the best in testing and treating people early. Improving Care, a new report to be published by Positively UK, found that alongside clinical care people wanted access to support from others living with HIV early in their diagnosis.
The Islington based charity, Positively UK, will be holding a series of self-contained weekend workshops for people recently diagnosed with HIV.
Facilitated by Positively UK staff and volunteers who are living with HIV themselves, the two day events will provide participants with the opportunities to: connect with other people living with HIV; learn how to get the support they need; and take control of their HIV.
6,000 people were diagnosed with HIV in 2013. Early intervention and support for people newly diagnosed with HIV improves well-being, enables better treatment outcomes and reduces the risk of transmitting the infection to others.
Marc Thompson, Peer Mentor Project Co-ordinator, stated, “Receiving an HIV diagnosis can be a worrying and confusing time. These workshops will give people the opportunity to connect with others in a similar position, with the same kinds of concerns. These weekend workshops will provide the participants with a deeper understanding of HIV, increased knowledge of treatment and care, and, most importantly, the chance to engage with other people; all of which will help open the door to living well with HIV.”
Over the course of the weekend, participants will be able to ask any questions and receive advice, guidance and support from the workshop facilitators who will share their expertise and experiences of living with HIV. Participants will also get to meet representatives from a range of organisations that provide support to people living with HIV.
The interactive workshops will explore the following:
The workshops will be delivered in London.
Some things that people who attended previous workshops have said:
“I’m still amazed by how much my perspective on my diagnosis and future has changed after this weekend. I feel so invigorated.”
“It took me some time to be in a group with people ‘like me’, but after learning from others and sharing I feel much stronger, inspired and looking forward to the future.”
“Before I attended the Recently Diagnosed weekend, I was someone who would suffer in silence. Positively UK had empowered me to take charge of my life. I know what service and treatment I should expect and was taking no prisoners!”
Positively UK is the leading provider of peer support for people living with HIV in the UK and has been delivering support for people living with HIV, from people living with HIV for over 25 years. Last year we delivered over 3000 hours of one-to-one support and 110 group support sessions, with 92% of service users reporting an increased ability to manage their HIV and reduced isolation.
This programme of workshops is funded by the Elton John Foundation and 56 Dean Street/ChelWest.
Health Protection England, HIV in the United Kingdom: 2012 Report. London: Health Protection Services, Colindale. November 2012.
Thursday, June 11th, 2015
This summer to promote awareness and show solidarity across everyone living with and affected by HIV, Positively UK will be marching at London LGBT+ Pride for the first time. The event will also mark the launch of our new gay men’s project.
Taking place on Saturday 27th June the march will be leaving Baker Street at 1 pm passing along Oxford Street to Oxford Circus, down Regents Street and ending near Trafalgar Square. Our theme will be ‘We are Positive’ and we’ll have branded banners and t-shirts as well as ‘#wearepositive’ stickers to give away to the crowds.
We’d love as many supporters, family and friends to join us on the day alongside staff, trustees, volunteers and service users to give Positively UK a great turnout for our first Pride! So please spread the word.
Jim Fielder, our new Gay Men’s Support Worker, will be co-ordinating so please let him know on JFielder@positivelyuk.org if you’ll be attending for what guarantees to be a fun day out.
You can find out more about the parade and who else is taking part on the Pride website: http://prideinlondon.org/2015parade/
Thursday, March 12th, 2015
Positively UK are extremely proud to announce that we are the winners of two PEN National Awards 2014.
The first award in the Personalisation of Care category identifies organisation that treat patients as individuals, with compassion and supporting their physical and emotional needs. Positively UK won for our programme of peer support delivered for and by people living with HIV. Through this we have supported people to better manage their HIV, improve their emotional well-being and gain valuable life skills. We are incredibly pleased to get this recognition for our work, beating out stiff competition from NHS Trusts and hospitals.
The second award was for best Overall Third Sector Organisation, out of all the finalists across all categories.
Allan Anderson, Chief Executive Officer of Positively UK said: “We’re incredibly proud of these awards. Peer support is a valuable and effective method of engaging people living with HIV and putting people at the centre of managing their condition. We have worked hard to develop our training and support to staff and volunteers and ensure our support is tailored to the unique needs of our individual service users, including an understanding of their strengths. The PEN National Awards recognise this and the hard work of our staff and volunteers”.
The evaluation of our peer support programme is on our website here…
The PEN Awards recognise and celebrate the delivery of outstanding patient experience by those involved in the healthcare industry who are bucking the trend and leading the way for future success in their field.
Friday, December 5th, 2014
Positively UK are proud to add our signature to a new statement from community organisations working on HIV prevention calling for PrEP to be made available on the NHS.
PrEP stands for Pre-Exposure Prophylaxis. It involves a person who doesn’t have HIV taking pills regularly to reduce their risk of acquiring HIV. Two European studies of PrEP, PROUD and IPERGAY, reported early results in October 2014, and both studies showed that PrEP was so effective at preventing HIV transmission that everyone in these studies has now been offered PrEP.
PrEP is currently only available in the UK to people enrolled in the PROUD study, but has been available in the US since 2012. Although an NHS England process to evaluate PrEP is underway, any decision to provide PrEP will probably not be implemented until early 2017, which is too long to wait. We are calling for earlier access to PrEP. The NHS must speed up its evaluation process and make PrEP available as soon as possible.
Friday, November 28th, 2014
This week politicians of all parties met with Positively UK and other members of the HIV community at the House of Commons to discuss their plans to keep HIV as a priority under the next government. Conservative Party Vice Chairman Mike Freer, Liberal Democrat Health team member Baroness Liz Barker and Shadow Public Health Minister Luciana Berger each spoke on key issues for voters in the HIV community, and outlined how the different parties would address them.
At the ‘Defining Leadership to tackle HIV’ World AIDS Day event hosted by the Halve It Coalition and the All-Party Parliamentary Group on HIV & AIDS, political leaders agreed that successfully combatting the public health challenge posed by HIV required a cross-party approach to keep it high on the political agenda, and that full implementation of NICE public health guidance on HIV testing was vitally important.
25 MPs, Peers and Councillors pledged to support the Halve It coalition in its goals to halve late diagnosed and undiagnosed HIV through national and local action. The event was attended by people living with HIV, advocates, clinicians, community organisations and policymakers, all of whom came together to unite in the fight against HIV, show their support for those living with HIV and to commemorate those who have died. Dr David Asboe, Chair of the British HIV Association, a founder member of the Halve It campaign, described the event as ‘a wake-up call for politicians to take urgent steps and ensure that the policies they have developed to tackle HIV are fully implemented and lives saved across the country.’
Jane Ellison, Public Health Minister, said: ‘I fully support the aims of the Halve It campaign, the Government is committed to reducing late diagnosis and the number of people who are unaware that they have HIV. People living with HIV can expect to live a long and healthy life if they are diagnosed early which is why our sexual health strategy focusses on prevention and testing. We are testing more people than ever, with fewer diagnoses, which shows we are moving in the right direction.’
Halve It is a national coalition that focuses on the expansion of HIV testing services, on the basis that early testing of HIV saves lives and also results in substantial savings to the public health budget. Since its inception in 2010, Halve It has galvanised national and local cross-party support for HIV testing, and is supported in its aims by the Prime Minister, the Deputy Prime Minister and the Leader of the Opposition.
Andy Burnham, Shadow Secretary of State for Health, said ‘Much more needs to be done to tackle HIV in this country. Everything from awareness around prevention, to early diagnosis, treatment and care. A key part of the solution lies in collaboration across stakeholder groups, nationally and locally. The Halve It campaign is an excellent example of local and national organisations and individuals uniting around an important issue and driving change.’
Halve It is a coalition whose members represents third sector and clinical groups including Positively UK.
Thursday, November 27th, 2014
Today we are proud to launch our new campaign, ‘We Are Positive’, raising awareness of HIV, challenging preconceptions and tackling stigma.
Did you know that: