Saturday, November 21st, 2015
A main barrier to some people taking an HIV test is fear of a positive result and the impact it might have on their lives.
In support of National HIV testing week 21st – 28th November 2015, Positively UK aims to remove the fear of testing and worry of a positive result.
During national testing week we will be sharing the stories of seven men and women who have had the HIV test and received a positive diagnosis.
We hope this diverse range of experiences will reduce the anxiety some people may have about testing and will enable those who may test HIV positive to seek support to live well with HIV.
My name is Helen, African Woman, Christian and church goer. I was tested in 2001. I had had health problems with my left foot bones not HIV related at all. Among the numerous tests done the Doctor included an HIV Test without asking me. To me it was my luckiest day because had I been asked to test I would have said NO NEED, I am not in any “Risky Category”. Yet on getting my results it was a late diagnosis.
Had it not been that doctor I would be among the many who are living with HIV and yet unaware. Or I would be dead from some disease that is manageable.
Testing saved my life and gave me a change to live longer. I am able to contribute to the development of society as a health working citizen, as a friend, a daughter, a sibling and above all as a mother.
When I got the result I felt lucky, overwhelmed, and full of anxiety about the future. Lucky because I had got a diagnosis and was to begin treatment which would give me a healthier life and a chance to see my son grow. Overwhelmed, how could it be me, for what reason would I be HIV+ when I was never at risk of any of the transmission ways known to me at that time! I was infected through the numerous foot operations I had had way back in Africa. Anxiety about the future: about how long shall I live, how will I take care of my child and where will I leave him. Will I be strong to work, shall I maintain my job. How about relationships, will I ever get into a relationship…???
Everyone reacts differently. I told my trusted friend who is a Medical doctor and she straight away addressed my anxiety: “Helen, with treatment the virus will be managed, you will have a normal life like any other person. See your child grow.”
First I took my medication as told never missed a dose and took it around the same time till now. I told every friend of mine and my family with time and selectively, so I told my parents 9 years later.
I am a spiritual person, I thanked God that I was detected to be able to get on treatment rather than dying of something that can be managed. I have kept my faith for strength and trust in the new developments around treatment.
When I told my friends and family, I had no fear and worry of judgement, stigma and discrimination. These important people in my life lived up to my expectations. Their understanding and un-judgemental ways towards me has continued to give me strength to push on with life.
For someone diagnosed late and being told that I was undetectable after being on treatment has kept me going and feeling blessed. The motivation to keep healthy and see my child grow and be independent keeps me going. Being able to complete graduate school, remain employed and being supportive to other people living with HIV through sharing experiences also keeps me going.
In the early days and years of diagnosis, I worried a lot about tomorrow if I shall be there. I worried about people knowing about my HIV status, and feared getting into an intimate relationship.
Today my life’s plan is of when I am 99 since in my family people do get to that age plus. I am talking about grandchildren despite my son being young and still in school. I am open to dating when the opportunity avails itself. I live openly about my status, I have appeared on television, in magazines and talked to communities, universities and colleges.
At diagnosis every thought and dream was about HIV and me living with it. Today it takes me sharing an experiences through peer support to think about HIV and it is never in a burdensome, worrying or stressful way.
Thursday, September 24th, 2015
A new report which addresses the wide range of issues which specifically affect women living with HIV and looks at some of the best way to address them.
This guide has been produced in conjunction with women living with HIV, and provides a helpful evidence base for support organisations and commissioners to improve and expand their support services for women living with HIV. Women living with HIV face a higher risk of poverty, mental ill health, and gender-based violence than the general population, and are more likely than men who have sex with men to be undiagnosed or diagnosed late.
We first outline the key issues facing women living with HIV in the UK today. We showcase examples of best practice from throughout the UK across a range of sectors that have been successful in tackling these issues and improving women’s health and well-being. Finally we end with recommendations for commissioners, voluntary and community groups, medical and social researchers, and healthcare providers to improve policy and programmes.
In December 2014, Positively UK hosted the “Women Know Best” conference in London, which brought together women living with HIV from across the UK. Women discussed the key issues that affected their lives, shared experiences, and developed recommendations to improve services. We then built on the ideas from the conference, and findings from a literature review, to produce this bottom-up report which is grounded in the real-life experiences of women living with HIV.
Evidence from the conference and literature review highlighted a number of key issues for women living with HIV. There were several areas in which we could not identify current best practice, and that deserve special attention to develop and establish support. These include services for lesbian and bisexual women, trans women, sex workers, and women within faith communities.
Thursday, September 3rd, 2015
Women: Meet other women living with HIV and share experiences Inspire and be inspired: Learn about specific issues for women living with HIV and developing strategies to address them Support: Build a support network and learn how to find sources of support Empower: Know your rights, develop skills to be heard and influence decision making. Unleashing Positive Potential: Be yourself!
The workshop will include:
Previous WISE-UP+ attendee
Where: Luther King House, Manchester
When: 30th October to 1st November
To find out more contact us on:
020 7713 0444 | email@example.com
Travel, food and accommodation and some support for childcare will be provided.
Tuesday, July 21st, 2015
Am I doing it right?
How do I negotiate safer sex with my partner?
Will sex be the same after a diagnosis?
With the help of our special guests we will have a day filled with:
Saturday 19th September
11:00am – 5:30 pm
345 City Road, London EC1V 1LR
Tuesday, June 30th, 2015
A new report highlighting the existing and new challenges in HIV treatment and care that people living with HIV are facing today.
Planning effective care for people living with HIV requires several factors to be considered. People living with HIV are often from vulnerable groups that have experienced discrimination, including gay men and migrant communities. HIV is still met with stigma in society and within healthcare settings, negatively impacting upon people’s experience of care and acting as a barrier to accessing the care required. HIV testing, treatment and care are now managed by multiple agencies across NHS England, Clinical Commissioning Groups and local authorities.
To tackle these issues we held two events: a workshop with people living with HIV from across England; and a roundtable with representatives from patient groups, NHS England, Public Health England, HIV specialist care providers and local authorities. Through this we identified six areas for improvement:
It is essential that people living with HIV have access to and receive good health and social care, have good experiences of care and achieve optimum health outcomes. Currently data focuses primarily upon clinical outcomes of care. In order to assess and improve the patient experience we need to introduce new mechanisms for assessing the quality of care and the outcomes achieved from a patient perspective. These should be centred upon:
Set out in this report is a summary of recommendations to achieve this. Data gathering and analysis can be costly and time consuming, and we have wherever possible sought to build upon established systems such as the General Medical Services (GMS) contract, and ongoing and important work in development such as the ‘Positive Voices’ survey and the development of Patient Reported Experience Measures (PREMs).
You can view and save the report as a pdf here.
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, April 9th, 2015
Wednesday, April 1st, 2015
Positively UK welcomes the findings from PROUD and IPERGAY studies, which demonstrate the high effectiveness of using Pre Exposure Prophylaxis (PrEP) as an effective tool for HIV prevention and promoting the health of gay men and men who have sex with men.
HIV transmissions continue to rise within the UK demonstrating that current interventions alone are not effective and new resources are required.
Positively UK joins other UK based HIV and LGBT organisations in urging the NHS to speed up the approval process and make PrEP available.
HIV is a complex area and achieving good sexual health for all requires a range of interventions, this include but are not limited to sex and reproductive education at appropriate ages including within schools, condom distribution, psychosexual support, Treatment as Prevention for people living with HIV, health and social care to reduce risk and vulnerability. Interventions must also address the wider determinates of health and behaviour such as poverty, mental health, and drug and alcohol use. PrEP is one intervention within a larger toolkit as a means to reduce rising HIV transmissions. Only when all these tools are sufficiently resourced will we tackle HIV.
Positively UK urges more research to be undertaken on the implementation of PrEP on key populations and other vulnerable groups such as women and migrants.
Education around PrEP is necessary both to raise awareness and to ensure people can make informed choices, including implications of its long-term use. There is also a need to support longitudinal studies including impact on maternal health, toxicity and resistance. It is crucial that people who choose to use ARV’s for prevention have the information and support to understand the potential impacts of both its short-term and long-term use.
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:
Tuesday, April 1st, 2014
A new report highlighting the damaging impact welfare reforms are having upon people living with HIV.
Based on a survey of 287 people diagnosed with HIV across England the report found that two-thirds of were affected by benefit changes, with nine out of ten reporting poorer health and limited access to HIV care as a result.
Handling of the reforms is criticised in the report, in particular assessments and their failure in supporting some of the most vulnerable in our community. In the words of one person living with HIV, “I had to appeal against my medical assessment. When it went to appeal it was given to me and not only that they decided I should have been in support group of ESA. This is so stressful and makes problems worse when having to appeal and money reduced until it is sorted.”
As a result the Counterpoint Policy Alliance is launching a new campaign ‘No-one should leave the clinic hungry’ to raise awareness of these problems. “We need to bring this issue to the attention of the NHS, MPs, Local Authorities and all those who can help change these punitive policies. Anyone who doesn’t have enough to eat will suffer poor health, and this is worse if you are living with HIV in getting the right foods to keep fit and healthy. If we don’t act now this problem could become a crisis for many people living with HIV.”
You can view and save the report as a pdf here.
Wednesday, January 22nd, 2014
Downloadable .pdf version of Improving well-being: The effectiveness of peer support
The findings in our new report, Improving well-being: The effectiveness of peer support, are the result of research conducted to give us an in-depth insight into the role Positively UK’s peer-led services play in enabling people to better manage and improve their health and well-being.
The research focused on four key areas:
We believe access to good quality peer support is vital for people living with HIV. This report sets out to demonstrate that, and how our work contributes to both the NHS Outcomes Framework in managing long-term conditions, and Public Health Outcomes Framework in improving well-being. We hope this report will be of benefit to all Positively UK’s donors in demonstrating the value of their investment, and as a useful resource to anyone seeking to establish local peer-led services. Nobody should face HIV alone, and we hope this research encourages everyone to understand the value of peer support now and in the future.
This project has been supported by an educational grant from MSD, and the secondment of A K Gilbert, researcher, and employee of MSD
Friday, September 20th, 2013
People living with long-term medical conditions experience higher levels of poor mental health and emotional well-being, and this is exacerbated for people living with HIV. This report, based on a survey of nearly 200 people living with HIV demonstrates the impact of mental health for people living with HIV socially and in managing their medication and highlights the lack of effective support. It concludes with recommendations to improve support and resources for people living with HIV to better manage emotional well-being.
You can view and save the report as a pdf here.
Friday, September 20th, 2013
Our From Pregnancy to Baby & Beyond project supports prospective and expectant parents affected by HIV to achieve the best start to family life and is delivered by our Mentor Mothers, who have all started families whilst living with HIV themselves.
If you would like more information about HIV and Pregnancy or would like one-to-one support around starting a family, then give Angelina a call on 02077130444 or email her at firstname.lastname@example.org
Friday, September 20th, 2013
Our report highlights these failings, alongside areas of good practice undertaken by prison healthcare teams, HIV clinics and the voluntary sector, and recommendations that need to be introduced to ensure people living with HIV in prison receive healthcare to quality standards of care.
Friday, September 20th, 2013