Our Publications

Reports into the treatment, health and social care, of people living with HIV and the commissioning of services affecting them.

Taking a Forward View on Women and Mental Health

Thursday, June 29th, 2017

Taking a Forward View on Women and Mental Health: Key Messages for Government

Taking a Forward View on Women and Mental Health: Key Messages for Government

This is an important new report from the Women’s Health & Equality Consortium (WHEC), of which Positively UK is a member, based on 9 years’ research on women’s experiences of mental health and seeking help. It highlights the importance of women only spaces, and specialised services, such as our Women’s Project in improving the mental health of women especially those who experience several layers of exclusion: such as women who live in poverty, BME women, and women living with HIV.

Women PrEPare

Thursday, December 17th, 2015

Key findings in the report are:

  • Healthcare providers need to recognise all the factors that may affect access and adherence to medication; they should discuss the importance of adherence with women, refer women to peer support, and seek ways to help women take medication successfully.
  • Women want and need access to comprehensive and accurate information about the effectiveness of different types of treatment and prevention methods.
  • Women’s idea of “good HIV prevention” is something long-lasting, quick-acting, discreet and undetectable, that has few side effects and, importantly, does not interfere with sexual pleasure.
  • PrEP enables women to share the responsibility of HIV prevention with their partner(s). Women living with HIV do not want to be solely responsible for preventing transmission to their partners – shared responsibility is important.
  • Women do not know enough about PrEP or how it works. The majority of clinical research and advocacy has centred on gay men, and this lack of involvement in research has led to poor awareness and low engagement with PrEP activism.
  • Women only spaces and strong support networks and are vital in enabling women through effective management of HIV treatment and prevention.
  • Peer support is especially important, as it has a proven track record in helping people better understand and manage their HIV, as well as help them to talk about their HIV to others.

A new report looking at the findings and evaluation of the Women PrEPare workshop that took place in London in July 2015, bringing together 30 women living with HIV from around the UK to look at HIV treatment and its use in prevention and how it specifically affects women.

Women PrEPare came about following the findings from Positively UK women’s conference Women Know Best, which included a recommendation to community based organisations to: “provide opportunities for women to develop and improve treatment literacy and treatment advocacy skills, and emphasise the benefits of participating in medical and social research.”

The workshop, held at Positively UK’s head office in London, was supported by a small grant from AVAC – Global Advocacy for HIV Prevention. It was an exciting day of learning and discussion around HIV, antiretroviral drugs, and new prevention technologies such as Pre-Exposure Profilixis (PrEP), Treatment as Prevention (TasP), and microbicides.

The main aims of the day were:

  • to improve women’s understanding of HIV, ARVs, and new prevention technologies including TasP, PrEP and microbicides
  • to stimulate discussion around, and to identify, the role that new prevention technologies can play for women living with HIV in the UK
  • to increase women’s confidence and skills in advocating for and influencing the access to treatment and prevention agenda

The content and direction of the day was designed by a steering group of women living with HIV.

 

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

The Manifesto of People Living with HIV

Tuesday, December 1st, 2015

This Manifesto is a campaign for change identified by the communities of people living with HIV around 5 key areas: HIV stigma, Treatments, Engaging, Support Services, and Aging.

Stigma exists in many settings from healthcare provision, the workplace, faith institutes and within our own communities. We seek to create alliances to tackle HIV stigma and change the discourse on HIV, and that people living with HIV are within our communities, are our family and friends.

We will seek the best and most effective treatments for people living with HIV to enable people to live with HIV as a long-term condition. We recognise that people with HIV have a right to make informed choices around treatment and start ARVs when they are ready.

We seek the implementation of a wider approach to tackling HIV prevention including the commissioning of PrEP.

We believe that policies, services and societal attitudes can only be improved with the greater involvement of people living with HIV. We want to develop the skills and knowledge of people living with HIV to meaningfully engage in policy and decision making.

We want multi-disciplinary and integrated care and support. We want clinical bodies, the voluntary and community sector to champion the value peer support across the UK for people living with HIV. We want to see greater access to psychological support services within the clinic and in the community. We seek greater co-ordination and integration to support people living with HIV on the care pathway for HIV and other long-term conditions.

We recognise care should address the needs of specific communities: Gay Men, Heterosexual Men, Young People, and Women.

With rising numbers of people living longer with HIV we need to ensure there are effective support and services to meet the physical, psychological, social and sexual health needs of all the diverse communities of people living with HIV in old age.

You can view and save the report as a pdf here

And download the one page summary here

Women Know Best Report

Thursday, September 24th, 2015

Key findings in the report are:

  • Improve the mental health of women living with HIV by providing well integrated health and social care services, including peer support, which address holistically the specific needs of women.
  • Commission innovative projects that promote the active and meaningful engagement of women living with HIV in the design and delivery of policy and programmes at community and national levels.
  • Train frontline health and social care staff in recognising signs of violence and introduce screening and referral to effective support for GBV in clinical and community settings.
  • Address the lack of gender specific data, and under-representation of women in clinical trials: increase positive women’s treatment literacy and ability to work collaboratively with researchers in designing, implementing and evaluating research.
  • Provide sustained support to networks of women living with HIV to increase their strategic influence and advocate for change that will improve women’s well-being and quality of life.

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.

 

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

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’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.

 

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.

Primary Care Access

Thursday, September 19th, 2013

HIV now a long-term medical condition there is greater emphasis for people living with HIV to access more of their healthcare from primary care services in particular GPs. The report demonstrates that there are specific challenges for people living with HIV in managing healthcare across different settings. People living with HIV also face barriers and at times discrimination in accessing primary care. The report also provides examples of good practice and recommendations of how General Practice can improve services for patients with HIV.