Category: UK Project

We want access for all who need PrEP – Equitable access to PrEP Now

A community statement October 2020

PrEP (pre-exposure prophylaxis) prevents people getting HIV and is almost 100% effective when taken as prescribed. It provides protection to the many people who continue to be vulnerable to HIV, both in the UK and around the world. The drug has been proven to be cost effective when measured against the cost of lifelong HIV treatment and care.

PrEP has already had an impact on HIV rates in the UK, with Public Health England clear that PrEP, alongside other HIV combination prevention interventions, has played a part in reducing HIV transmission – particularly amongst gay, bisexual and other men who have sex with men (GBMSM).

But PrEP has the potential to do so much more – to be the driving force behind England meeting the target of ending new HIV transmissions by 2030.

Yet, there are major obstacles in the way of this potential.

PrEP can be an important HIV prevention tool for many people at risk of HIV. From gay and bisexual men, to women, Black African and other ethnic minority communities, and trans people.

Yet, these communities are currently not equally benefiting from PrEP.

Whilst awareness and uptake of PrEP in gay and bisexual men is high (but could always be higher), HIV Prevention England has found that Black African men and women are less likely to know about PrEP and may have misconceptions about what it means, who it is for and how to access it.[1] This is despite making up 44% of new heterosexual HIV diagnoses in 2018.^[2]

This is not equality. This is not enabling all those who could benefit from PrEP being able to equally access it.

Between 2018-2019, a PrEP Commissioning Planning Group was established, jointly chaired by NHS England and the Association of Directors of Public Health and reporting to the Impact Trial PrEP Oversight Board. The group drafted a document: “Preparing for the commissioning of Pre-Exposure Prophylaxis (PrEP) in England: Recommendations of the PrEP Commissioning Planning Group”. This document was not published, yet it includes important recommendations around ensuring equitable access to PrEP in England that we believe the Government must address.

The burden of HIV is not evenly distributed, nor is the use of PrEP as a method of HIV prevention. The principle of equity – across different risk and demographic groups, and geographically – must be evident throughout routinely commissioned PrEP programmes: from knowledge and creating demand in at-risk individuals (e.g. via targeted health promotion programmes), to access, to uptake, to use, and importantly, in outcomes. In line with this principle, provision of various aspects of PrEP must be proportionate to need.

• A national HIV PrEP programme affords the opportunity to champion equality throughout the delivery of PrEP and strengthen relationships not only with gay and bisexual men but especially other groups at high risk of HIV acquisition who may not otherwise engage with sexual health services.
• A national HIV PrEP programme must go beyond the provision of drugs and adopt a whole system approach which, focusing on individual rights and choice, identifies those at risk of HIV who could benefit from PrEP but who are not accessing it currently; helps those at risk to identify appropriate prevention options; and supports their journey along it.
• A national PrEP programme must also understand and seek to address the structural inequalities that drive inequity in PrEP access. These include working to address community-level, socio-economic and cultural factors.
• To be effective, the comprehensive PrEP programme will need a novel, innovative approach (not just ‘continue’ or ‘within the current’); for activities to occur both within and outside specialist sexual health services where PrEP will be delivered and be undertaken by community organisations and non-GU clinicians.
• Costs of introducing PrEP must include the need for enhanced community mobilisation and engagement, especially for Black African men and women, women of other ethnicities, trans people, younger and BME GBMSM groups, and other underserved groups. It must also focus on increasing awareness of PrEP in young people.

The need for additional pathways to ensure equity of access should consider primary care (including non-traditional delivery e.g. app-based provision of GP services), maternity, and termination of pregnancy services. These services must be co-designed with communities to examine the acceptability of potential pathways to be commissioned as well as looking at delivery. As the national PrEP guidance from BASHH and BHIVA states, “limiting provision of PrEP to level 3 sexual health clinics risks widening health inequalities disproportionately among black, Asian, and minority ethnic (BAME) populations.”

National and local health promotion activity must address the need for additional information on PrEP to facilitate equity of access.

We also support the PrEP Commissioning Planning Group’s recommendation that a national PrEP Equity Audit tool should be used to ensure that no communities are being left behind in accessing PrEP.

For too long, access to PrEP has not been even. With the current roll out of routinely commissioned PrEP, action must be taken to ensure that all who can benefit from PrEP are aware of it and can access it.

Inequity in access to PrEP is not acceptable.

[1] https://www.hivpreventionengland.org.uk/2020/07/30/prep-knowledge-attitudes-and-usage-among-black-african-communities-in-england/

[2] https://assets.publishing.service.gov.uk/…

About HIV Scotland
Since our formation in 1994, we have achieved a great deal. One historic breakthrough came in 2017 thanks to our campaign, when Scotland became the first UK nation to provide PrEP on the NHS; a drug proven to prevent HIV transmission.

What We Do
We work for and on behalf of people living with and at risk of HIV. Amongst many other things, we provide legal advice or advocate access to treatment or support services. We also carry out research to ensure that policy makers are aware of up-to-date evidence so that policies services and practice can reflect the needs of these people. We run events t improve public awareness and knowledge around HIV and we campaign publicly to modernise people’s understanding to end stigma and discrimination. Our priorities and work are shaped by people living with HIV so we host an Advisory Network meeting every couple of months to ensure our work and policies align with and meet the needs of people living with HIV – nothing about us without us!

We are now pushing forward our groundbreaking #ZEROHIV campaign to achieve zero new HIV transmissions, zero new HIV-related deaths and zero HIV- related stigma & discrimination in Scotland by 2030. Our work doesn’t just help people get by; it helps them thrive.

The Fit for the Future Initiative
In 2018, HIV Scotland undertook a survey of 2,806 young people in Scotland which revealed that many young people are leaving school with inadequate and inaccurate sexual health information. The vast majority of students expressed a need for more contemporary & comprehensive sexual health messages, whilst teachers pointed out that sex education lesson plans & resources were outdated & not readily available.

The survey illustrated that a whole generation of young people are growing up misinformed about HIV, sexually transmitted infections, & sexual health in general. To reduce future transmissions & to provide young people with the right information to remain healthy, we are co-developing a project with young people to create national sexual health resources which can be incorporated into sexual health lesson plans. This will include a series of short online films written & created by young people for young people.

Our project will train young people to create video content which can be used for sex education lesson plans. This will include information around HIV & other bloodborne viruses/STIs to prevent transmission & to enable young people to have happy, safe, well-informed & healthy relationships. This will empower young people to educate their peers & make a difference in their country & across Scotland as the resources will be freely available & rolled out across the country. This will make sex education more accessible & relevant to young people as it will be up-to-date, informative & made from a young person’s perspective.

Dylan Morris, HIV Scotland’s Policy and Public Affairs Officer leading on this project, said: “Our research into the education of Scotland’s young people and their readiness for the adult world has given us a clear route forward in terms of improving their knowledge. Our ongoing work regarding sex education will make a huge difference at an individual level, but also at a societal one as we work towards zero HIV-related stigma in the next decade.”

Kevin Rowe, HIV Scotland’s Fundraising Manager, said: “For a small charity undertaking national work, such a generous grant from the MAD Trust means we can physically deliver this initiative to help young people better understand the reality of HIV today & take an important step towards ultimately reaching zero HIV in Scotland by 2030. Thank you.”

 

ADDINGTON AFRO-ETHNIC HEALTH PROMOTION GROUP (AAEGRO)

We are an independent community-focused HIV group that builds awareness of HIV and provides support services for people living with HIV.

We provide information and support services to African Refugees and Asylum Seekers. Our services include information on health, referrals to social services and advocacy on services available.

We organise activities that help to reduce isolation among target communities.

• This service: is for Sub-Saharan Africans
• Languages Available: English, Swahili, Luganda and Lingala
• Location: Cornerstone House, 14 Willis Road, Croydon, CR0 2XX
• Organisation: Health Promotion Group for Ethnic Minorities
• Service Type: Advice and Advocacy

The Grass Is Always Grindr – Season 2:
‘The Grass Is Always Grindr’ is a web series developed to reinforce PRIME’s key risk reduction messages. It represents a new way of spreading education to our patients, and any men who have sex with men, about HIV,PrEP/PEP, apps, STIs, loneliness and self-esteem. Following premiering on PRIME, the episodes are released on social media to reach a wider audience. Given the success of the first series, with the three films gaining over 300,000 views (and counting), we are delighted that Make a Difference are supporting our team in making a second series.

In the next films, we’ll expand our themes and reach. As well as retaining our primary core focus on HIV prevention, we plan to engage viewers in awareness of chemsex (a widespread sexual health issue amongst some of our patients), drug safety, HIV disclosure to family and friends, navigating emotional intimacy, and an examination of the legacy of the AIDS crisis on older gay men, and their sex lives. We’ll develop our focus on BME characters, encourage testing, and explore growing up LGBT in an often hetero-normative society.

The films will be released on a monthly basis to our YouTube channel in 2019. You can see all episodes back to back below:

GHB/L overdose has become a leading cause of death in 56 Dean Street HIV patients and Season 2, Episode 6 is particularly important as it explains how to save someone’s life if they o/d in the storyline.  

Talking About HIV:
The aim of this project is to educate the general public and increase awareness of HIV in Bristol and surrounding areas. The level of awareness of HIV has regressed in recent years and this means that people living with HIV continue to face stigma and discrimination which affects their wellbeing. Talking about HIV will address this issue by sharing the facts about HIV and dispelling myths.

The project will deliver a diverse program of HIV education initiatives: HIV awareness training; public campaigns; events and workshops; and strengthen community partnerships.

All of the activities will be co-delivered by a team of volunteers living with HIV who have been trained in public speaking and have up to date HIV knowledge and awareness.

About Brigstowe:
Brigstowe’s vision is a world in which people living with HIV live long and healthy lives, free from poverty, stigma, prejudice and discrimination. Brigstowe’s aim is to enhance the quality of life for people living with HIV through a wide range of responsive services including advice, peer support and a specialist migrant service.

Enhanced Food & Nutrition Services for People Living with HIV in Crisis

It was on Christmas Day in 1988 that The Food Chain delivered its first meal for people living with HIV – a home cooked Christmas dinner, with all the trimmings, made by volunteers in a borrowed kitchen and delivered to people’s homes.

From that Christmas day to this, The Food Chain has been providing food and nutrition support for people living with HIV in London, at times of crisis.

Our services are delivered by more than 200 volunteers, supported by a small staff team of just six posts.

Each year we receive referrals from health and social care professionals all across London for approximately 350 people living with HIV an in acute need:

• They may be recently diagnosed and already be sick with an Aids defining illness.
• They may have been recently discharged from hospital after an in-patient stay.
• They may be on a very low income, or no income at all and not able to afford to buy food for themselves or their families.
• They may be homeless or in unstable accommodation,
• They may be refugees or asylum seekers trying to make a life somewhere where it is safe to be open about your HIV status.

Many will be experiencing poor mental health, social isolation and nearly all have experienced stigma and prejudice because of their HIV status.

As well as helping the person referred to us, our services help support their family members and reach a further 250 people, including children, babies and adult carers.

• We can supply up to 3 grocery deliveries to fill empty cupboards
• People are then invited to attend our lunchtime meal service in King’s Cross on Wednesdays and Saturdays, where they can meet other people, share a hot, nutritious lunch and get information and support to help them get better both physically and mentally.
• We also offer a nutrition and cookery course of 4 topics to help improve nutrition knowledge and build up practical cookery skills for the longer term.

Joyful Noise Choir is an inclusive, peer support group made up entirely of people living with HIV. It not only serves as a community for HIV-positive individuals, but as an uplifting and inspiring tool to help end the stigma associated with HIV.

Joyful Noise Choir is open to anyone living with HIV and offers multiple opportunities to connect with others and raise awareness, including practices, workshops and public performances. The choir also is open to individuals who wish to keep their HIV status confidential.

Liverpool Community Collaborative: Make a Difference Trust enables the creation of an innovative partnership project in Liverpool.

The Make a Difference Trust has contributed to the funding of an incredibly exciting new project to take collaboration between specialist HIV community nurses and the voluntary sector to a new level. In times of intense pressure on resources this is a new way of working that prioritises the most at risk clients and tailors services to their needs, to help them on the road to a better life with HIV.

The collaborative approach will see specialist nurses and support workers teaming up to deliver services to people in their homes or community settings. It will particularly target those people who fall off the radar of hospital based clinics. Homeless people, those with problematic drug use and those unable to attend clinic for other reasons, such as severe mental health issues, face many more challenges managing their HIV and general health, when compared with peers. The funding from Make a Difference Trust will help the partnership understand their individual needs and take practical steps to make life better from people from these groups.

Sahir House has been providing information and support for people living with HIV in Merseyside and North Cheshire for over 30 years. This year the charity has been shortlisted for a GlaxoSmithKlein Impact Award. The Liverpool HIV Community Nursing Team has been in existence for a similar length of time and has recently been shortlisted for (won?) a Care Innovation Award.

“The MAD Trust has really made a difference for the Crescent. It has enabled us to supply a consistent counselling service to people who greatly need that service.”

“Thanks to the MAD Trust, we at the Crescent can guarantee our vital counselling service for the whole of the next year.”

The Crescent Support Group is a registered charity (no. 1003547) providing holistic support both by and for those affected by HIV/AIDS. We are a member-led organisation based in St Albans serving clients in Hertfordshire and Bedfordshire and sometimes from further afield. The charity has been serving the HIV positive community for nearly 30 years. Many of our volunteers are current or former clients, and several of our trustees are people living with or affected by HIV. Because of this and our long experience as a charity we are able to provide services that are tailored specifically to the needs of the individuals we serve.

In addition to the support we provide to our members and their families, we promote and undertake testing facilities and assist with the delivery of HIV-specific and wider sexual health education in schools and colleges as well as promoting public awareness of HIV-related issues. Since losing our previous contract funding in the local authority spending cuts of 2010/11, the Crescent has survived through the hard work of our two phenomenally committed and indefatigable staff members, our volunteers and the generous financial support of charities and concerned individuals. It is vital that we continue providing support to this disadvantaged and hugely under-represented community.

The Crescent Support Group Extended Counselling Project Summary

A significant proportion of our members (the people living with HIV who depend upon us for support) present with or (sometimes) subsequently develop mental health issues. Our experience is that they benefit greatly from counselling sessions with high quality professional counsellors deeply familiar with this area of work. We also find that counselling can help partners and family supporters who are struggling to come to terms with a loved one’s HIV diagnosis. In some cases, counselling needs to be both intensive and long term. As a general proposition, appropriate counselling of a sufficient quality is rarely available through the NHS or Social Services.

The Crescent has supplied a high quality counselling service for many years. We are, however, an unfunded organisation largely dependent upon the support of private donors and charitable trusts. The extent of the counselling service we have been able to supply has constantly been constrained by budgetary limitations and we have been forced to suspend the service from time to time when funds have been tight. In short, the demand for this vital service has outstripped our financial resources.

The Extended Counselling project made possible by the financial support we are receiving from the Make a Difference Trust and Herts Community Foundation will enable us to supply a sustained and dependable counselling service to all our members who need it and to take in new members in need of support from a counsellor in the certain knowledge that we will be able, for the next 12 months, to supply this key service in a comprehensive manner and without interruption.

New app created by experts at Chelsea and Westminster Hospital NHS Foundation Trust
to support people living with HIV

BeYou+ is an innovative new mobile app providing specific, reliable and accessible information for people living with HIV, to support self-management, quality of life and well-being. BeYou+ enables users to focus on being healthy, living well and achieving personal goals.

The app was invented by Darren Brown, a Specialist Physiotherapist at Chelsea and Westminster Hospital, with content provided by HIV experts from across the HIV service including Kobler Clinic, 56 Dean Street, John Hunter Clinic, 10 Hammersmith Broadway, Chelsea and Westminster Hospital. BeYou+ was funded and developed by hospital charity CW+ together with their technology partner Imagineear.

BeYou+ is separated into three sections – body, mind and life. Each section provides helpful advice, guidance and information specific to the user’s requirements.  The app also provides practical tools to help users manage their health by setting personalised goals, inputting health and medication information, setting reminders that sync with their calendar and much more. Users are sent daily reminders to support achieving personal goals and receive rewards when achieving these. The app secures patient confidentiality with users creating a personalised four-digit passcode to access the app. All data is stored on the device and not shared with anyone else.

Darren says: “I am delighted that people living with HIV are now able to use this app to focus on being healthy, living well and achieving personalised goals. To have specific, reliable, up-to-date information provided in a convenient and accessible way, means users can access what they need, when they want it, with the aim to improve self-management skills, quality of life and general well-being. I am passionate about my work and the people I work with on a daily basis, so I am really excited that my idea has been transformed into BeYou+”.

BeYou+ was funded through an initiative between CW+ and Chelsea and Westminster Hospital, called the Enterprising Health Partnership. This initiative funds and supports innovative ideas from hospital staff which will make a real difference to patients’ lives and which generate revenue or real cost savings for the hospital.

BeYou+ is now available to download on Apple and Android devices.

CW+ is the charity for Chelsea and Westminster Hospital NHS Foundation Trust. We exist to make care better for patients and their families.

From our base at Chelsea and Westminster Hospital we bring together pioneering research, innovation, art and design to transform the experience and outcomes for thousands of people every day – in our hospital, in the wider community and internationally.

We do this by:

• Raising funds for education, training and ground-breaking research to identify new life saving treatments and illness prevention for babies, children and adults.
• Delivering an award-winning art and design programme to transform the hospital environment and experience for patients, families, volunteers and staff.
• Investing in financially sustainable innovations, facilities and technologies which improve clinical outcomes for patients.

www.cwplus.org.uk

About Chelsea and Westminster Hospital NHS Foundation Trust

Chelsea and Westminster Hospital NHS Foundation Trust runs two main hospitals:

• Chelsea and Westminster Hospital
• West Middlesex University Hospital

We also offer a range of community-based services, including our award-winning sexual health and HIV clinics across London. With 5,000 staff caring for nearly one million people locally, regionally, nationally and internationally, we provide a range a specialist clinical services as well as general hospital services for people living locally, which include A&E and maternity at both our hospital sites.

Our ambition is to lead the NHS with world-class, patient-focused healthcare delivered locally.

www.chelwest.nhs.uk

About Imagineear Ltd

Imagineear is a leading provider of multimedia content and technology solutions. We design and produce multilingual content, which we often integrate with existing archive materials, as well as live audio. We publish to smartphones, and to smart devices on-site, working with sports venues, cultural sites and the healthcare sector. In London and Amsterdam, we have experienced content, hardware, software and data solutions teams. Our goal is to help our clients deliver exceptional value and memorable experiences to their visitors, both on- and off-site. 

 www.imagineear.com

For media enquiries, please contact Sarah Holland, Communications Manager on Sarah.Holland@cwplus.org.uk or 020 3315 6610