Between the Sheets

Tuesday, July 21st, 2015

 

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

Am I doing it right?

How do I negotiate safer sex with my partner?

Will sex be the same after a diagnosis?

 

Are you a woman living with HIV?

Aged 18+

Interested in learning more about sex and pleasure?

Want a complimentary MAC makeover?

 

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

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

When:

Saturday 19th September

11:00am – 5:30 pm

Where:

345 City Road, London EC1V 1LR

 

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

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

 

 


Positive Change

Tuesday, June 30th, 2015

Key findings in the report are:

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

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

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

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

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

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

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

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

 

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

 


Positively UK to challenge HIV stigma at London LGBT Pride

Monday, June 22nd, 2015

 

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

 

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

 

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

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

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

 

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

 


New peer-led workshops for people recently diagnosed HIV positive in London

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:

  • Finding out and coming to terms with our diagnosis
  • Telling others you have HIV
  • How HIV works in the body
  • Starting and taking medication
  • Sex and relationships

DATES

  • 11 – 12 July 2015
  • 22 – 23 August 2015
  • 26 – 27 September 2015
  • 10 – 11 October 2015
  • 28 – 29 November 2015
  • 30 – 31 January 2016

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

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.

Key Facts:

  • There are 100,000 people living with HIV in the UK – 24% of people are unaware of their HIV infection
  • 6,000 people are diagnosed HIV positive every year in the UK
  • Over 3,000 of the newly diagnosed were gay men
  • Just under 3,000 of the newly diagnosed were heterosexual, mainly from African and other BME communities
  • Nearly half of those newly diagnosed presented late, with symptoms of ill health, and at increased risk of dying

Health Protection England, HIV in the United Kingdom: 2012 Report. London: Health Protection Services, Colindale.  November 2012.


Positively UK to march at LGBT Pride London for the first time

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/


An evening for People Affected by HIV

Thursday, April 9th, 2015

 
People-Affected-by-HIV

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 


Positively UK’s Statement on PrEP

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.

 


“And the winner is…”

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.

PENNA-Logo-Category-winner


Access to PrEP

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.

 

Read the full statement and add your signature here

 


Politicians of all parties pledge to tackle HIV under the next government

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.

 

Allan Anderson and Chris Williamson MP
Allan and Chris Williamson MP who had just signed the pledge to Halve the number of people
living with undiagnosed HIV and to Halve the number of late diagnoses

 

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.

 


Launch of ‘We Are Positive’

Thursday, November 27th, 2014

HIV is not me

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:

  • 1 in 10 people in the UK still think that HIV can be passed on by kissing (it cannot);
  • 1 in 5 said knowing a family member was HIV positive would damage their relationship with them;
  • 1 in 10 people in the UK would be uncomfortable working alongside a colleague who was HIV positive.

The Impact of the Welfare Reform on People Living With HIV in England

Tuesday, April 1st, 2014

Key findings in the report are:

  • The number of benefit changes individuals go through make a significant difference to their health and well-being.
  • The medical assessments of PIP and ESA are failing to addressing the psychological impact of HIV and the variable impact of the condition on day-to-day life.
  • There are significant reductions in the services offered by HIV charities.
  • Women from black and minority Ethnic communities, Latin Americans and white gay men over 50 are hardest hit by welfare reform.
  • There are serious mental health issues caused by the shame and stigma that respondents feel when applying for benefits.

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.”

The report was carried out by the Counterpoint Policy Alliance, a collaboration of three leading HIV charities: Naz Project London, Positive East and Positively UK.

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


Improving well-being

Wednesday, January 22nd, 2014

“..without Positively UK I would still be struggling…”

 

 

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:

  • What is the perception of Positively UK’s peer support?
  • How does our peer support enable people to better manage their health?
  • How does this support complement clinical care?
  • How does this support impact on well-being?

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


States of Mind

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.


The Pregnancy Journey

Friday, September 20th, 2013

‘The Pregnancy Journey – a practical guide’ is full of information to help you have a healthy, happy journey through pregnancy to baby and beyond and includes many of the questions that are asked by women living with HIV who are planning to have a baby or are pregnant.

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 anamiba@positivelyuk.org


HIV Behind Bars

Friday, September 20th, 2013

People diagnosed and living with HIV in prisons require specific support in managing their health and well-being. Positively UK’s review of health care and support provision in prisons identified cases of sub-standard healthcare with people refused HIV medications, denied confidentiality and experiencing discrimination.

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.


Commissioning Effective Services for Women Living with HIV

Friday, September 20th, 2013

A guide for those whose work includes planning and commissioning health and social care services for women living with HIV including Clinical Commissioning Groups, Local Authorities and NHS Commissioning Board. The guidelines look at the needs of women living with HIV and how services should address these. Developed by Positively UK in partnership with the Women’s Health and Equality Consortium.

Bea’s Story

Thursday, September 19th, 2013

Women living with HIV

Bea

Can I have my children tested?’ I managed to mumble those words. The doctor had just given me my HIV test results; I was positive. My mind was racing, pictures of the ‘thinning’ bodies I saw back home in Uganda were flashing in my head, the pictures of death were too vivid! I stared blankly into space, holding on tightly to my children. Grateful that at least I was a mother, my concern now was with their health; surely, they must be positive! I could not imagine that it was possible to have healthy children after a positive diagnosis. I could hear the doctor talking, ‘there is no point in getting your children tested now because they are not yet five years old’. I did not shed a tear; in shock, I left the hospital and headed home like a zombie to break the news to my husband. He was my only source of support at the time. The stigma was very high in my community and since I did not have any physical symptoms, I did not tell anyone outside the medical team; it became the big secret in my life.

All this happened at Mayday Hospital. I was not given any pre-test counselling and I had to wait two weeks to see a counsellor even after diagnosis! There was no specialist HIV clinic, and I used to see a consultant in the chest clinic. Appointments were characterised by a long wait since there were no specific, allocated times, and a ten-minute session with the consultant, if you were lucky. Just as well, because all he ever did was let me know my CD4 count, then send me off for more blood tests; the dreaded lab forms with a big red sign in the middle and the words ‘highly infectious’. I remember sneaking around the hospital corridors with my form folded until I got to the blood test department where you could see the nurses’ discomfort from their body language; or was I projecting my own fear and discomfort onto others? I remember vividly that with every appointment my CD4 was dwindling and with it my life. I didn’t understand how it worked, but the steady drop, was an indication I was facing imminent death.

Close to breaking point, I was saved by the National AIDS Helpline service who directed me to the ACE project. The organisation has since closed down, but the wonderful people I met there were my salvation. This was my first opportunity to meet other people like me, HIV positive. The majority were gay men, one of whom in particular inspired me to carry on, and who had been positive for 14 years. Even though my GP had given me leaflets about Positively UK, I didn’t have the courage to contact them; besides at the time they were located in Sebastian Street which seemed so far away from Croydon, especially with two young children. Little did I know that at the time there was travel assistance!

My life changed dramatically the day I finally braved the doors of Positively UK. I can’t believe it’s almost 15 years since my diagnosis! A lot has changed, more complacency, increased diagnoses, treatment options, but the stigma remains.

I believe behind every cloud is a silver lining. Today I can say that my diagnosis was a blessing in disguise because it gave me the opportunity to understand the value of life and to search for my true self. I couldn’t agree more with Rhonda Britten in Fearless Leaving: ‘Adversity has the effect of eliciting talents that would otherwise have lain dormant.’ The struggle continues, but I now know there is more to me than the HIV.


Jane’s Story

Thursday, September 19th, 2013

Women living with HIV

Jane

I was 24. I was living in NY, was enrolled in film school, and had undertaken the first half of my film degree. I had been living there for five years, spent the first three married to an architect, and when our marriage floundered had found myself young, free and single in the Big Apple. HIV had dealt New York a harsh kick in the teeth, many of my friends were gay and I felt more aware than most of the threat of transmission and the realities of the virus. I remembered the campaign back home with John Hurt, the falling sickles and lilies on tombstones. I had been sixteen when those ‘infomercials’ were aired and I remember the rainy day when the flier came pushing through our letterbox at home. I had taken mine to school and it had been hotly debated in the girls’ loo. Suffice to say we breathed a collective sigh of relief when we felt that we had nothing to fear, after all, things like that didn’t happen to nice middle class white girls like us… Did they? I had always practised safe sex, had taken a test in NY when I got my green card and been monogamous in relationships.

That morning, I received a call from the doctor’s surgery at work, ‘odd’ I thought and called my boyfriend. We had been together almost 18 months by then, living together a year. It was he who had suggested I stop working. He told me he’d support me through my last two years at film school. For our future, he had said. We were serious. ‘It’ll be a routine test result, they want to talk stuff through with you before they change your health insurance policy.’ I remember him saying, ‘Baby, don’t worry!’ I still took my best friend with me. When the young doctor finally sat me down, he explained exactly which test had come back positive. He told me I may live ten years, not to have children, that there was no cure or medication and suggested I get support from a place called Gay Men’s Health Crisis. The shock was enormous. There were tears. I went terribly quiet and immediately retreated, withdrawing into a world that took me nearly five years to return from. Sometimes I feel as though I still exist there, even after all this time. A place that is lonely, shameful, and damaged, where my own body is my enemy and the person I blame is myself. I didn’t blame my partner for keeping quiet about his drug use. I understood that he thought I would never have looked twice at him if he’d divulged that side of his past. I believed he had not known he was positive and therefore had not knowingly taken chances with my health.

Despite that, we broke up and for the next few years, I embarked on a mission to live without future. I quit school, buried myself in work, career and the pursuit of money. I rented a summerhouse upstate, travelled extensively, bought a car and partied in the most expensive shoes God ever created, learnt how to scuba dive, ride a motorbike and jumped out of planes. I counted down the years before dying and worked through my own personal checklist of what I thought I should do before I went.

When I finally stopped to draw breath, I realised I was miserable, bruised and angry. It wasn’t working, this living in the moment malarkey. I decided to come home. I returned to London in 1996 like a person who had been chewed up and spat out. I avoided boys rather than let them reject me until I met someone who was different. When we found out I was pregnant I finally sat with my HIV diagnosis and faced it square. It was the most terrifying time of my life. I had to try and believe in the possibility of my own future once more, to begin to live with the fear rather than run from it. I faced the disease as best as I could and found the London Lighthouse and Positively UK who helped me meet others and put me on the track I have never looked back from. Finally, the meds came and I started them during my pregnancy, my father disowned me but others stepped up where he’d fallen away. My son gave me strength, my second gave me hope and together my little family have given me back the courage and the reason to stand back up, breathe and keep on walking forward.


Mem’s Story

Thursday, September 19th, 2013

mem's personal story of living with HIV

Mem

I still remember the very cold January morning; I was not listening to the pre-counselling, I thought it did not concern me. I just wanted to get the test done and over with… Then came the shock! My life changed in a matter of seconds.

I had arrived from Zimbabwe on 20th December to attend my paternal aunt’s wedding the following day. The wedding went very well, it even snowed! Christmas followed and the celebrations seemed endless. I started feeling unwell after Christmas, thought it was all the hectic celebrations and weather and maybe I still had jetlag. I tried a few over-the-counter remedies for colds and flu but did not get any better. My aunt, a retired nurse, advised me to go for an HIV test, just in case… It was then that I had gone to St Ann’s with a cousin and my friend. I had been working for 16 years for a Southern Africa regional NGO, as an IT Manager. I had an annual bonus of US$2,000, to spend outside the country, so I got a ticket plus spending money, and came for four weeks – for the wedding and those fabulous January sales! I had visited the UK on several occasions in the past on holiday and work.

I worried, and the word DEATH featured in my thoughts all the time. I could see myself as one of those people in the media adverts of Africans dying of AIDS – just skin and bones, I was frightened. I had unfinished business back home. I changed my return ticket several times hoping that I would still be able to go home. My annual leave was running out, I asked my boss for a month’s extension, citing a kidney infection that would soon go away. My son, 15, was going back to boarding school – fortunately my employer paid for my son’s fees as part of my contract and I had left my parents in charge of my son. But there was also my rent, property and other bills, car, etc…

I asked the consultant if I could get enough drugs so I could go back home to resign from my job properly, before coming back to continue with treatment (I had to make sure I collected my pension and tied up all loose ends, but was told this was not possible.

I had a 65K viral load and CD4 was below 10, I had to start ART immediately. I read the enclosed medication leaflets and could not believe I was actually on treatment for HIV! After two weeks on treatment, I started having terrible side effects and other infections kicked in. They suspected I had TB, so while I was waiting for the test results, I was started on TB treatment. Three months later it turned out that I did not have TB after all, but at the stage I was taking up to 18 tablets a day. I could not eat and lost a lot of weight. I was admitted to hospital for two weeks with high fever and was very anaemic. A scan detected malfunctioning liver and abnormal kidneys – polycystic kidneys are hereditary in my family.

During this time, worry and I became good friends; worry brought along stress, anxiety, fear and depression to keep me company. I then came to PW with a cousin to attend the support group. It was a life changing experience, and my life took a turn for the better!

My visa was expiring in June; I had a solicitor and sent in my application for leave to remain on compassionate grounds. I then applied to join the Positively UK volunteer training in October; I was depressed most of the time but realised I had to do something with my life in order to move on. I am still a volunteer and was nominated Volunteer of the Year by the Third Sector magazine.

So, five years down the line, I wonder when I will ever see my only child; my immigration is still unresolved, I cannot be gainfully employed and I cannot travel outside the UK. I have however made great friends through HIV and I get a lot of inspiration from them. I still have a lot to smile about!