Last Saturday was a big day for me and for other fifty women living with HIV from all over the UK , who met in London for the Women Know Best Conference. This was an event organised by Positively UK with the aim of offering a platform to women living with HIV to identify good practice and influence commissioning and service provision
The conference program was planned by a steering group of diverse women living with HIV, which I had the honour of chairing.
Collectively we decided on the best program, to inspire and motivate us and other women to talk about our lives and the services, programs and other things that need to be in place make us healthy and fulfilled despite HIV.
The opening plenary session included a presentation by Kate Thomson, one of the funding members of Positively Women, the mother organisation of Positively UK. Kate, who is now working for the Global Fund as Head of the Critical Enablers and Civil Society hub spoke about the history of women’s activism in the UK. It was terribly moving to see pictures back from the 80’s and 90’s of Jayne and Sheila (Positively Women founders) and other young women, most of them now dead from AIDS, who for the first time got together to have the rights of women living with HIV voiced and recognized .
Kate reminded us that some of those young women based in the UK were also instrumental in setting up the International Community of Women Living with HIV and AIDS in 1992 in Amsterdam and contributed to the creation of the 12 Statements about women and activism, which are still very relevant now.
Alongside Kate spoke two clinicians who have done incredible work to support women living with HIV. Prof. Jane Anderson and Dr Rageshri Dhairyawan.
Prof. Jane Anderson, works at the HIV clinic at Homerton hospital in east London and also plays a crucial role at Public Health England where she works as special adviser on HIV. Prof. Anderson spoke of the importance of our experiential knowledge of HIV to influence and maintain services that are effective for us, she invited and encouraged us to use the opportunities of new channels for patient voice and audits of patient experience to be heard within the NHS. I cannot do justice to how Prof. Jane Anderson spoke. She is so passionate and committed to the health and rights of women living with HIV. And It was important for us, as women with HIV, to hear that some of those in power are proactively seeking our input and ideas, and that, hopefully, it is not just rhetoric.
Dr Rageshri Dhairyawan did a brilliant presentation on medical issues for women living with HIV. She had the hard task of summarising in 15 minutes how gender inequalities and biology affects our health, and she succeeded.
Following those three powerful speakers we had a line-up of women living with HIV talking about projects and intervention that made a difference in our lives, including WISE UP+ advocacy training lead by the Sophia Forum,, peer lead services for women in Leicester, From Baby to Mother Beyond mentor mothers project and how they used participatory film making to promote rights. I presented about Positively UK’s work in prison, which spans over 20 year. Finally we had Matilda, a young woman who was born HIV positive and who was instrumental in creating Positively UK peer-lead youth project
The rest of the day was spent doing workshops: participants could pick two, one in the morning and one in the afternoon The workshops gave us an opportunity to discuss more in depth within smaller groups some of the crucial issues that affect women living with HIV.
The workshops’ topics were:
- Access to healthcare services,
- Gender based violence
- Mental Health
- HIV through the ages
One of the most moving and inspiring thing was that all the workshops were facilitated and lead by volunteers, women living with HIV that had develop their skills and confidence through peer lead, women focused interventions such as WISE UP and the Mentor Mothers Project.
- Difficulties in accessing primary care, including stigma and breaches of confidentiality
- Difficulties accessing smear tests: as a consequence of fragmentation of NHS services. This is quite worrying as women living with HIV can progress quite quickly to cervical cancer, even in the era of ARVs, and need yearly screenings as per BHIVA recommendations.
- Difficulties accessing contraception. None of the women in our discussion group had ever been offered any contraception, and it was assumed that they were using condoms and that those were enough. However BHIVA recommends that women who do not want to conceive should have access to another contraception on top of condoms (dual contraception). This is because condoms are not as effective at preventing pregnancies as they are at protecting from sexually transmitted infections.
Example of good practice in this area included developing women understanding of HIV and treatment literacy, as well as a better understanding of the monitoring that we are meant to have to keep healthy alongside BHIVA guidelines regarding women sexual and reproductive health and rights.
A wealth of information and recommendations was reported back from all workshops groups during the closing plenary .
The feedback from participants, confirmed that the I am not the only one who thought the event great. Here are some quotes:
“Women with HIV are often rendered invisible, and this event gave us a voice.”
“Great day, enjoyed networking and total solidarity, support and respect from every woman that attended. Very empowering.”
“So great to be amongst such positive energy and breadth of experience. Also great to be with other women who are passionate and empowered.”
“It is a fantastic initiative and forum to get the voices of actual service users. I feel heard and included in my care.”
“Very good day – expertly delivered with dignity, respect and warmth. A wonderful personal beneficial day for me connecting with very old friends, and meeting new ones from around the UK.”
“A chance to input our experiences – and come out with concrete solutions by the women who matter and are experts in our own lives.”
To conclude I want to say that an important element in the success of the day was the enthusiasm, solidarity, support and hard work of our intern Hayley Gleeson. Hayley worked tirelessly to organise the day, including travel, hotels, food and all the administration. Hayley is now in charge of writing a full report and also incorporate a literary review about best practices in providing services for women living with HIV. The document will be available to all women living with HIV in the UK as an advocacy tool, and will be shared widely among commissioners and services providers.