Positively UK Podcast (Positively UK)

In our second episode we talk about the lockdown effect on people using Chems. Our host Chris O'Hanlon poses questions raised by our service participants to HIV Consultant Dr Mark Pakianathan and Richard Lisle, Lead for the 'Change Grow Live' Fast Tack Cities HIV/Drugs project.

We hope this episode will improve your understanding on interactions between HIV treatment and recreational drugs, and the physiological and psychological effects associated with Chemsex.

As the topic in this episode may bring up difficult feelings and emotions, we have included a list of support resources alongside a full transcript of the episode on the podcast webpage.

Dr Mark Pakianathan is Consultant Physician in Sexual Health & HIV at Guy’s and St Thomas’ NHS Foundation Trust, London where he leads on gender and sexual minority sexual healthcare. He has had a career spanning 3 decades of experience of managing HIV from the pre-treatment to existing era. 

Richard Lisle has worked in Drug and Alcohol treatment in Greater London and the criminal justice system with different organisations for over 18 years. Over the course of his career, he has worked as a group facilitator, drug worker, manager as well as implementing Chemsex support within services and raising awareness around HIV. 

Chris O’Hanlon is Positively UK’s Gay Men’s Project Coordinator and Caseworker. 

This episode examines how Positively UK evolved to provide services for Gay men, the development of the Gay Men’s Group which is a support group for gay and bisexual men or those who have yet to decide, living with HIV, and the ongoing work Chris and his colleagues offer. Alongside his background in HIV campaigning and activism, Chris is also a qualified Coach, Clinical Hypnotherapist and Sports Injury Therapist. You can find out more about Chris via his website: https://chrisohanlon.com/ and how to listen to his gorgeous podcast ‘And Then There Were Humans’.  

Janine McGregor Read currently works at Homerton Hospital in the multiple disciplinary team with pregnant women and is also a peer navigator and the East London coordinator at Positively UK. In this podcast, Janine shares her experience of being pregnant as well as becoming a mother living with HIV.

In this episode, we are joined by Daisy Puller and Harun Tulunay to discuss the impact of awareness of HIV in the LGBTQIA+ community. Harun is the Training and Volunteering Manager at Positively UK, an NHS Patient and Public Voice Partner, and a member of the UK-CAB Steering Committee. Daisy is a volunteer peer-mentor for Positively UK and a Fast Track Cities ‘HIV Confident’ Ambassador. By day Dan is a fashion product developer, and by night she is Daisy Puller - a fabulous drag queen with big blonde hair and even bigger heels. You can find out more about both these wonderful souls here:
Harun: Twitter Instagram

Daisy: Instagram

Sue O’Sullivan is a prolific writer, editor and publisher and champion of women’s rights, particularly their health rights. In this episode we explore feminist publishing and the genesis of the edited book, Positively Women: Living with AIDS (1992). Sue has previously worked with Red Rag,  ICW News (International Community of Women Living with HIV/AIDS), Spare Rib, before moving to Sheba Feminist Publishing. Today Sue is part of the HOWL (History of Women’s Liberation) project, a website that collects the memories and stories of feminists involved in any of the many layers of the UK Women’s Liberation Movement.

Beatrice Osoro firstly started working with Positively Women as a volunteer. Now, she is our Clinical Outreach and Statutory Contract Lead. In this episode, Beatrice shares her experience of servcies for African women in the HIV sector and how she found a safe space at Positively Women.

Julie Reynolds was one of  the founders and former editors of Positively Women’s magazine. She currently works in Family Support Management but still is a Peer Mentor with Positively UK and also works with the Bearded&Flushed project. Here, she talks about the reasons why she started the magazine and what it was like for women living with HIV in the early 1990’s.

Rebecca Mbewe is a peer mentor, speaker and trainer with long standing experience of working within the HIV sector with various organisations. Angelina Namiba has over 24 years’ experience of working in the HIV sector. Among many things, they are co-directors of the 4M Mentor Mothers which is a peer-led programme that trains women living with HIV across the UK as Mentor Mothers. Together, they share their experiences navigating through their careers and raising their children whilst living with HIV.

Carolyn Williams was the first peer volunteer at Positively Women and Fiona Pettitt is currently a peer volunteer at Positively UK and is a former Trustee at the ICW. They talk about how they felt supported and held at a time where it had been difficult to access groups specific to women living with HIV.

Is HIV a risk factor for severe COVID-19? Do we need to disclose our HIV status when receiving our Covid-19 vaccine?

In this episode our host Chris O’Hanlon talks to the Chair of the British HIV Association Dr Laura Waters about Covid-19 related concerns of people living with HIV.

Dr Waters is a GU/HIV consultant and HIV lead at The Mortimer Market Centre, London. She is Chair of the British HIV Association (BHIVA) and the BHIVA treatment guidelines, and sits on the Board of the British Association of Sexual Health and HIV (BASHH).

Make sure you check our podcast webpage where we have included a list of additional resources on the topic.

Cinzia Milesi was one of the first Prison Workers at Positively Women and an instrumental advocate for women in prison and women who use drugs. Sophie Strachan is the CEO of the Sophia Forum and currently sits on the BASHH special interest group for prisons developing quality standards for sexual health in prisons. In this episode, they both share their personal experiences with HIV and Prison and discuss the support they received and still advocate for.

Professor Jane Anderson is a Consultant Physician in HIV Medicine at Homerton University Hospital in Hackney, East London. Jane established and is the director of the Centre for the Study of Sexual Health and HIV at Homerton. In this episode, Jane discusses the history of HIV treatment in terms of how it effected and affected women at the start of the pandemic, the importance of considering mother’s wellness alongside their child’s health, and makes a case for the vitality of including women living with HIV in HIV research.

Alice is the founding director of the Salamander Trust and works as an activist, researcher and participatory trainer in the field of HIV. In this episode, Alice discusses the role that gender plays in women's health outcomes, with specific references to HIV. Here are links to some of the studies Alice mentions: Violence against women, What will it take to achieve the sexual and reproductive health and rights of women living with HIV?, Enhancing Social Norms Programs: An Invitation to Rethink “Scaling Up” from a Feminist Perspective, 20 years of Shamefully Scarce Funding for Feminists and Women’s Rights Movements | AWID and specifically the chart Alice mentions.

In this episode, Garry Brough, a pioneer in our sector, shares insights on representation, peer support, and identity. Eli Fidgerald shares his inspiring journey from Bristol to Youth Project Coordinator at Positively UK.

Together, Garry and Eli also discuss the importance of peer support, relieving the burden of openness about HIV, and diversifying representation. Hear about visibility, hyper-visibility, and power representation.

Hello everyone!

In this weeks episode we discuss issues around welfare and finance.

Following on from our recent Discussion on Welfare & Finance earlier in March, we sat down with Terrence Higgins Trust LivingWell Services Manager Ruth Burns, The Food Chain’s Volunteer & Services Manager Anna Brewster and Positively UK’s Welfare Rights Advisor Rosa Midheksa-Kenea. We put your questions to the panel

The Food Chain - Volunteer & Food Service Manager - Anna Brewster

As Services & Volunteer Manager, Anna oversees the delivery and day-to-day operation of these services. Most people who come to The Food Chain are experiencing complex socioeconomic barriers to living healthy, independent lives. Anna provides directional support for those in hardship; working together to navigate, make sense of and access support services and networks.

Terrence Higgins Trust - Livingwell Services Manager - Ruth Burns

Ruth Burns is the Living Well Services Manager at Terrence Higgins Trust. Ruth started 10 years ago developing the Work Positive program – a development programme for people living with HIV looking to re-enter the workplace, build skills and confidence. Now Ruth manages a collection of LivingWell services to empower people living with HIV to live well at home, with friends and family, and at work.

Positively UK - Welfare Rights Advisor - Rosa Midheksa-Kenea

Rosa Midheksa-Kenea has been working in the fields for 10 years. She has been involved in various organisations and currently works for Positively UK.

Resources & Support Organisations

https://www.tht.org.uk/our-services/online-services/work-and-skills - Terrence Higgins Trust personal development, work and skills programme

https://positivelyuk.org/welfare-rights-advice/ - Positively UK we offer a specialist welfare benefits service for people living with HIV

https://www.foodchain.org.uk/about-us/what-we-do/ - The Food Chain deliver meals and groceries, offer cookery and nutrition classes and communal eating opportunities to people living with HIV in London and their dependants.

https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/help-with-your-claim/fill-in-form/ - Advice from the Citizens Advice Bureau on completing your PIP application

https://www.stonewall.org.uk/help-and-advice

https://www.gov.uk/government/publications/taxes-and-benefits-information-for-lesbian-gay-bisexual-and-transgender-customers-leaflet-pride1 - This leaflet explains the impact of taxes, National Insurance contributions, tax credits and State Pensions for lesbian, gay, bisexual and transgender customers. 

https://jobhelp.campaign.gov.uk/ a wealth of advice for job seekers and job search ideas

https://nationalcareers.service.gov.uk/ for skills assessment, finding a course, exploring career options and speaking to a careers adviser

https://www.futurelearn.com/ for a huge variety of online courses to boost your skills and knowledge

https://www.turn2us.org.uk/ - Turn2us helps people in financial need gain access to welfare benefits, charitable grants and other financial help – online, by phone and face to face through our partner organisations.

https://www.moneyadviceservice.org.uk/en - Free and impartial advice from The Money Advice Service

https://taxaid.org.uk/ - Help with Tax problems if HMRC can’t sort it out

In this weeks podcast we discuss accessing HIV services during the pandemic and thereafter.  Following on from our online discussion, we brought your questions to the panel to find out more on the issues that affect people living with HIV.  As services adapted to the Covid-19 pandemic, many services changed to telephone and online appointments.  You can find a full list of resources and support organisations in our show notes below.

We hope you enjoy the show.

Dr Stuart Flanagan is a Consultant in GU/HIV & Blood Borne Virus (BBV) Medicine at CNWL Trust’s Mortimer Market Centre in Central London and Honorary Consultant at University College London Hospital. He is the Viral Hepatitis Lead for CNWL Trust.  Stuart was an NIHR Clinical Research Fellow in Hepatology on the HepFREE study (testing for HBV and HCV in Primary care), which was published in Jan 2019 in the Lancet Gastro & Hep.  He is chair of the BASHH HIV/BBV Special interest Group and the organising committee for the annual BASHH HIV Masterclass conference. Stuart has been a medical broadcaster for the BBC (BBC Radio 1 Surgery, CBBC’s Newsround, BBC Breakfast). He wrote and presented a BBC Radio 4 documentary on antimicrobial resistance The Path Of Least Resistance, available to listen to via BBC iPlayer.  

Dr Richard Ma is a GP principal in London and NIHR Doctoral Research Fellow at Imperial College London. He has a research interest in delivery of sexual and reproductive health in primary care. His current research focuses on equity and impact of contraceptive provision in general practice. He has held positions including: member of RCGP’s Sex Drugs and Blood Borne Virus Group, National Chlamydia Screening Advisory Group, expert member on NICE Guidelines on Preventing Sexually Transmitted Infections and under-18 conceptions and more recently expert member for NICE Quality Standards Advisory Committee on Contraception and NICE Scholar. He frequently writes and lectures on all matters related to sexual health/HIV and campaigns for better experience for LGBTQ+ patients in general practice. Most recently, he has been one of the founding members of #PrideRCGP programme, set up to improve experiences and well-being of LGBTQ+ community of peers and patients.

Shaun Watson has worked in and around HIV since 1989 initially as an HIV link nurse in Hull (ensuring that healthcare professionals were educated and people living with HIV received appropriate care) and a volunteer counsellor at AIDS Action. Since 2005 I have worked as a community HIV clinical nurse specialist in central London and Chair of the National HIV Nurses Association for the past 4 years.

Dr Nicola Mackie is a Consultant Physician and Clinical Director for HIV at Imperial College Healthcare NHS Trust. Her research was in the field of HIV-1 drug resistance and she runs the weekly Virtual Clinic. Although her main interest is clinical work, she is involved with writing national guidelines; examining for dipHIV and  teaching for BASHH and EACS. She is a Trustee of the British HIV Association and a member of SWIFT (Supporting Women with HIV Information Network).

Resources & support organisations 

The Mortimer Market Centre - https://www.shl.uk/clinic/mortimer-market-centre 

Jefferiss Wing Sexual Health - https://www.imperial.nhs.uk/our-services/sexual-health-and-hiv 

Positively UK podcasts https://positivelyuk.org/lgbt-podcast/ 

Dean Street Sexual Health https://dean.st/ 

This podcast series is part of the archival research project Positively Past, Positively Present. In this episode, Positively UK’s CEO, Silvia Petretti, and Women Project Co-ordinator, Neo Moepi with Co-Researcher and Project Manager, Maryam Shaharuddin discuss why the project is taking place and our ways of working.

Jo Manchester was a co-founder of the International Community of Women living with HIV (ICW). You may remember Rebecca Mbewe from Episode 2, she is one of the directors for 4M Mentor Mothers Network and also works on the GROWS project at Positively UK which looks at issues that affect women and ageing. In today’s episode, in honour of International Women’s Day, Jo and Rebecca speak about their experience with Gender and HIV as women. You can find out more information about the ICW's 12 Statements here.

In this weeks episode we discuss Managing Isolation & Wellbeing Strategies.

The Covid Pandemic and Lockdown has been a difficult time for everyone. Managing our mental health and wellbeing has been a challenge that many have had to adapt to, especially for those who struggle with anxiety and depression. 

Joining our podcast today is Clinical Psychologist Dr. Felicity Saunders, Prepster’s and The Love Tank Strategic Lead Phil Samba and Wellbeing Coach Mina Kakaiya, who are at the forefront of support and guidance for people living with HIV. You can find a full list of resources and support organisations in our show notes below. 

We hope you enjoy the show. 

Dr. Felicity Saunders is a Clinical Psychologist who works within the NHS at The Mortimer Market Centre. She completed her doctorate at University College London (UCL). She has a keen interest in how compassion focussed therapy can support those with sexual wellbeing difficulties and those living with HIV. She has previously experience working within trauma services and uses these skills within her current role, supporting those who have been sexually assaulted or experience stigma in relation to their sexuality or diagnosis of HIV.

Phil Samba is the strategic lead for #PrEP4QueerMenOfColour at Prepster, (The Love Tank) an organisation that educates and agitates for PrEP in England and beyond. He is a social activist, a writer and a researcher with a focus on health inequalities of people of colour. His work primarily focuses on improving the sexual health of queer men of colour, he strives for equality within the intersection of race and sexuality and provides an honest representation of black queer men.

Mina Kakaiya is an author and Transformational Wellbeing Coach, Hypnotherapist and Mindfulness Practitioner. As well as being a HIV Activist, Mina has been involved in a number of HIV campaigns and teaches Emotional-Resilience, Mindfulness and sexual wellbeing.

Resources & Support Organisations

Stonewall - https://www.stonewall.org.uk/about-us/news/how-covid-19-affecting-lgbt-communities 

LGBT foundation - https://lgbt.foundation/coronavirus/why-lgbt-people-are-disproportionately-impacted-by-coronavirus

Self Compassion: https://youtu.be/-kfUE41-JFw

How to be a friend to yourself: https://youtu.be/wFUxiIjp-Nk-

Connect with other LGBT people through forums and online chat e.g. www.trevorspace.org. Organisations such as LGBT Foundation, Terrence Higgins Trust and Galop are holding number of workshops, events and support sessions via Zoom so you can stay connected

Sexual health

Sexual Health London https://www.shl.uk/

Prepster  https://prepster.info/covid/

Dean Street https://dean.st/chemsex/chemsex-support-during-covid-19-outbreak/

Antidote https://londonfriend.org.uk/antidote-drugs-alcohol/

Change Grow Live https://www.changegrowlive.org/advice-info/alcohol-drugs/chemsex-drugs

LBGTQI+ community

GALOP https://www.galop.org.uk/community-links/

London Friend https://londonfriend.org.uk/

Terrance Higgins Trust https://www.tht.org.uk/

LGBT Foundation http://lgbt.foundation/

LGBT Tribe https://support.therapytribe.com/lgbt-support-group/

Outlife https://www.outlife.org.uk/forums

Black Out UK https://blkoutuk.com/

+Pals https://metrocharity.org.uk/hiv/plus-pals-hiv-support-group

Trans Network London http://transnetworklondon.org.uk/

Connect Well https://www.livingwellcic.com/portfolio-item/connect-well/

Positively UK podcasts https://positivelyuk.org/lgbt-podcast/

Silvia joined Positively UK in 1999 as a volunteer and was appointed Positively UK’s CEO in February 2019. In this episode, Silvia speaks about female leadership and mentorship. She has represented people with HIV on the British HIV Association (BHIVA) Board, chaired the UK-CAB and represented the Global Network of People Living with HIV at the United Nation. She currently sits on the World Health Organisation advisory board on women and HIV.

In our first episode, we talk about what it means to age with HIV.  

Following on from our recent group discussion on ageing and HIV, our host Chris O'Hanlon discusses what it means to grow older with HIV. Joining him in the discussion is HIV Consultant Dr Tristan Barber and Peer Mentor Coordinator Rob Hammond.  

Dr Tristan Barber is a Consultant Physician in HIV Medicine at the Royal Free Hospital. He a British HIV Association (BHIVA) Trustee and Executive Committee member, as well as Chair of the BHIVA Education and Scientific Subcommittee. He has a research background in HIV-related neurocognitive impairment and phase 3 clinical trials, having been awarded his MD by the University of Cambridge in 2019, as well as having recently establish a dedicated frailty service for ageing patients with HIV infection (The SAGE Clinic). He coordinates the educational exchange programme for Justri.org, and is passionate about supporting global HIV educational and research programmes

Rob Hammond is the HIV Peer Mentor Coordinator at the Sussex Beacon, Rob is also a qualified psychotherapist, coach, clinical supervisor, and facilitator.

We hope this episode will give you insight on what it means to age with HIV and address many of the questions you have sent us. Make sure you check out the episode notes on the podcast page, including a list of support resources and organisations where you can get further information.

Resources and Support

British HIV Association - A national advisory body on all aspects of HIV care - www.bhiva.org

Opening Doors London - is the largest UK charity providing support for lesbian, gay, bisexual, trans queer, non-binary, or gender fluid people over 50 - http://www.openingdoorslondon.org.uk/

Terrence Higgins Trust - A support group for people diagnosed on or before 1996 - https://www.tht.org.uk/our-services/head-office/96-peer-support-group

YMCA Positive Health Programme - The programme is available to anyone living with HIV who would benefit from help with being more active or starting exercise with support and guidance. - http://www.ymcaclub.co.uk/aboutus/hiv-positive-health

Metro - A social group for LGBT people aged 50 or over in Woolwich -https://metrocharity.org.uk/community/metro-50-plus

Positively UK Therapeutic Horticulture - Depending on Covid-19 government restrictions, The Seeds participants gather face-to-face or online for gardening sessions, talks around plants, mindfulness sessions, outdoor gym classes, picnics and nutrition talks. https://positivelyuk.org/therapeutic-horticulture/

Out in the City - Out in The City is a project (supported by Age UK Manchester) to support members of the lesbian, gay, bisexual, and transgender communities who are over 50 years of age. -https://outinthecity.org/

Tonic - Tonic is focused on creating vibrant and inclusive urban LGBT+ affirming retirement communities where people can share common experiences, find mutual support and enjoy their later life. - https://www.tonicliving.org.uk/

LGBT Foundation - support the needs of the diverse range of people who identify as lesbian, gay, bisexual and trans. - https://lgbt.foundation/bringdementiaout

In this final episode we close our first season of Positively Past, Positively Present hearing from two individuals who grew up in Positively Women warm embrace/in PW’s atmosphere//grew up alongside PW: Malika Cholway and Chiesa Musonda. Malika, better known as Hamzaa, and Chiesa share with us their experiences growing up around the phenomenal women at Postively Women, with specific shout outs to their extraordinary mothers: Angelina Namiba and Rebecca Mbewe. Listen out for Hamzaa’s new EP ‘Rush’ on Apple Music or Spotify. 

Dr Rageshri Dhairyawan is a Consultant in HIV Medicine at Barts Health NHS Trust, and is an Honorary Senior Lecturer at Queen Mary University of London. Rageshri is Chair of the Steering Group of the 4M Network. Dr Shema Tariq is a Clinical Academic at UCL's Institute for Global Health and Honorary Consultant HIV Physician at Mortimer Market Centre. She is Vice-Chair of the Board of  Trustees at Positively UK and Trustee of Tommy's, the UK's leading charity funding research into pregnancy loss and preterm birth. In this episode, we speak with Shema and Rageshri about HIV medicine and health inequalities in sexual and reproductive health care and support.