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Where's the Hope? Dialogues for Solidarity, Session 2


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Women as Services users and providers with guests Sophie Strachan and Memory Sachikonye, Sophia Forum Co-Chairs.

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Where's the Hope? Dialogues for Solidarity, Session 2

  1. 1. Where’s the hope: Dialogue for solidarity – Session 2 Coordinated by ReShape 1 Where’s the hope? Dialogues for Solidarity 27 April 2017 Session 2: Life experiences – Women as service users and providers with guests Sophie Strachan and Memory Sachikonye, Sophia Forum Where’s the Hope?, a year-long series of dialogues for solidarity, is coordinated by ReShape, an independent London-based think tank formed to respond to the ongoing crisis in sexual health. Working together, activists and organisers will share their experiences and explore new op- portunities to address explore chronic obstacles to successful organising in HIV, HCV and re- lated sexual and mental health concerns. Emerging advocates and organisers are especially welcome.
  2. 2. Where’s the hope: Dialogue for solidarity – Session 2 Coordinated by ReShape 2
  3. 3. Where’s the hope: Dialogue for solidarity – Session 2 Coordinated by ReShape 3 Background to the series Huge gains have been made in HIV and HCV, related sexual and mental health con- cerns. We have the science and practice to prevent and treat HIV and HCV; we know more than ever about related sexual and mental health concerns. We are reframing our problems to aim toward sexual health and social wellbeing. Yet individuals, organisations, the media and systems continue to stigmatise people living with these diseases and conditions and they often stigmatise themselves. One could al- so argue that these conditions are less stigmatised within the healthcare system today, than they once were - at least HIV - but MORE stigmatised outside of the healthcare system. Where’s the Hope?, the result of extensive dialogue with UK and international activ- ists, is a ReShape series of inter-related community dialogues, in partnership with leading UK HIV/HCV/sexual health and well-being sector organisers, organisations and out-of-country experts. The series will explore the key challenges and gaps of the day, and seeks to promote solidarity, community engagement, organiser mentoring / co-mentoring and effective initia- tives. Where’s the hope? intends to be inclusive of people living with HIV (PLHIV), people living with HCV, BAME (Black, Asian, Minority, Ethnic), trans people, elders and young people, as well as social researchers. The ReShape series is designed to assist organisers, activists, advocates and service users impacted by HIV, HCV and related sexual and mental health con- cerns, with a special focus on emerging advocates and organisers. All dialogues will be documented, disseminated and posted to contribute to local and international dialogue. The series will run monthly for a year, on the last Thursday of every month. Sheena McCormack European ChemSex Forum, 2015 We can’t keep compiling our lives as a series of problems one after the oth- er, HIV, Chemsex, hepatitis C, de- pression... We need to create institu- tions where people can get support for themselves in a holistic way around sexual health and well-being, a t h e r
  4. 4. Where’s the hope: Dialogue for solidarity – Session 2 Coordinated by ReShape 4 Life experiences: women as service users and providers The second session in the series took place on Thursday 27th April 2017 with Sophie Strachan and Memory Sachikonye, co-chairs of Sophia Forum. The session explored key challenges for women as service providers & service us- ers. Guest Presenters: Sophie Strachan & Memory Sachikonye Sophie Strachan, Co-chair Sophia Forum Sophie is Co-Chair of the Sophia Forum, living with HIV since 2003. Following her diagnosis Sophie provided peer support in prisons and clinical settings through her former role at Positive- ly UK. She is an accomplished Trainer, facilitator and interna- tional speaker, Sophie currently works as a sexual health advi- sor based in London. Pieces of work include leading on a piece of research looking at “Are the health and social care needs of people living with HIV in UK prisons being met?”. An abstract of this work was presented at Washington 2012 World AIDS confer- ence. Sophie has been instrumental in being an advocate for this population of people and has written aspects of her own story in magazines, which have reached women all over the world. She mobilised the invisibility of lesbians and bisexual women living with HIV developing a project voluntarily run. Sophie was invited to speak and present on these issues at the 2010 World AIDS conference in Vienna. Sophie worked as an associate with The Salamander Trust as a global reference group member in the design and research on sexual and reproductive health and human rights of women living, commissioned by WHO to inform the development of its new guidelines on this topic. Sophie has spent the last 2 years contributing to policy development and implementation through her patient voice advisory role at NHS England health and justice board. She sits on the BBV opt out policy for prisons task and finish group and the immigration and re- moval assurance group and is a specialist committee member with NICE, developing quality standards around the physical health of people in prisons. She was a member of the NICE guideline development group, which published guidelines on the physical health needs of people in prisons. Sophie also sits on the Royal College of General Practi-
  5. 5. Where’s the hope: Dialogue for solidarity – Session 2 Coordinated by ReShape 5 tioners Secure Environment Group and has delivered workshops at the health and justice summit conference for the last two years on patient voice, prison reform. Sophie has been an advisory member with GNP+ key population group since 2013 con- tributing to the development of their human rights count tool and their positive health, dignity and prevention operational guidelines. She co-facilitated a workshop in Durban at the World AIDS conference on Stigma alongside a Key population member. Sophie re- mains a member of the Global Coalition on Women and Aids, and was invited by UN Women to present on women’s leadership in the response to HIV, in Kazakhstan last year. Sophie was recently appointed a member of Gilead's European Community Advisory board, and is a member of United4PrEP. Memory Sachikonye, Co-Chair Sophia Forum Memory Sachikonye has been living with HIV since 2002 and currently works for HIV i-Base as co-ordinator for the UK Community Advisory Board (UK-CAB). UK-CAB is network of HIV treatment advocates from across the UK with over 850 members and 120 organisations. It focuses on HIV treatment and treatment-related areas. She is the Co-chair Sophia Forum, which promotes and advocates for the rights, health, welfare and dignity of women living with HIV through research, raising awareness and influencing policy. Memory is a member of the European AIDS Treatment Group (EATG). She is the co-chair of EATG's Development and Membership Advisory Group (DMAG). Memory has also supported the setting up of the African Community Advisory Board (AfroCAB). Memory’s other advocacy involvement include: • Community representative on HIV studies steering and management committees; includes input into the design and management of clinical trials. • One of the four patient representatives on the NHS England HIV Clinical Reference Group (HIV CRG) from 2012 to 2016. • Service User Representative for the Enfield and Haringey HIV Providers’ Forum and chair of the HIV patient forum at North Middlesex hospital. • PozFem UK - a unique national voice and support network of women living with HIV that keeps women informed of HIV, health and social issues. It works to in-
  6. 6. Where’s the hope: Dialogue for solidarity – Session 2 Coordinated by ReShape 6 crease the understanding of issues for women amongst policy makers and service providers locally and globally. Memory volunteered at Positively UK (then Positively Women) from 2002. She is a mem- ber of Poz-Fem UK. She is an experienced public speaker and advocates for asylum seek- ers, especially women’s rights to services and access to treatment. Memory has many years experience in UK and international support networks and services. Life experiences - Presentations Memory Sachikonye Memory opened the meeting with a recount of her experience as a woman immi- grant living with HIV, exploring issues around immigration, support, fear and stigma. Born in Zimbabwe, Memory was diagnosed while visiting the UK, when a cold was unexpectedly diagnosed as HIV. At the time of her diagnosis, her CD4 count was less than 10 and her viral load was above 65000. This left her with an impossible choice: to stay in the UK in order to get treatment, as ARVs were not yet available in Zimbabwe, or go home to die. Although the situation has now changed, issues around intermittent drug stock outs remain a problem in her home country today. A family member living with HIV introduced Memory to Positively Women (now Positively UK), where she was able to access support services. There, with the support of other women, she was able to regain her self-esteem and learn about living with HIV. Her visa was running out at that point so Memory started the difficult and lengthy asy- lum application process. While waiting, she started to volunteer as a coping mechanism against stress. 6 and half years later, Memory was finally granted refugee status in the UK as her role as an HIV activist would have made her liable to prosecution in her home country. Treatment was difficult and as a late presenter she had to start treatment immedi- ately. She developed IRIS (immune restitution inflammation syndrome), had to be hospi- talised and found out she was also suffering from a kidney disease. She was also suspect- ed to have TB. Her recovery was quite slow and it took 2 years for her CD4 count to get back up to 200. Meanwhile, Memory also had to cope with the stress of being a mother living in another country, her son being 15 when she left. She had left the UK for 3 weeks and in- stead ended up staying. She relied on her parents who had to take care of her son who was still in school.
  7. 7. Where’s the hope: Dialogue for solidarity – Session 2 Coordinated by ReShape 7 During that time, her main source of support was from Positively Women, which helped her realising she was still alive and helped her regain what she thought she had lost. It also helped her to disclose her HIV status. They offered lots of peer support, pro- vided information on where to go for other services, offered training, and much more. The support was just for women, which made her feel comfortable and gave her the con- fidence she did not have. Memory’s story highlights the many difficulties faced by immigrant women, who have unique challenges and needs to overcome. From the dilemma of having to chose whether to stay to access treatment or to return home to their family, to fears of deporta- tion, loss of status, loss of family and friends. Having the added responsibility of caring not only for themselves but also for their children and families they have left behind can be a profound source of stress as well as generate a sense of guilt and powerlessness. Support groups can allow women in this situation to start working through their feelings of loss, helping them to realise their worth and reshape their lives. However, today, to access services, women need to be proactive. Peer support and most of the services have closed down due to lack of funding and there are very few ser- vices for women. Women have other responsibilities as mothers, wives, carers, and to be of use, services need to meet women’s additional needs, such as supporting them with childcare, education and work. Service providers, if they want women to be responsive, will have to develop suitable services, able to demonstrate they can face difficult issues and communicate with women at a deeper level. Sophie Strachan Sophie focussed her talk on women as service providers, looking in particular at women, intersectionality and HIV. Sophie started her presentation by noting that recently, in the post Brexit era, there had been a massive drive towards immigration control and a recent article in the Guardi- an indicated that the government had reached a deal with NHS digital to share patients’ personal information with the Home Office in order to track down undocumented mi- grants. Doctors of the World, the National AIDS Trust, Liberty and Privacy International have called for a suspension of the data sharing service and have started the #stopsharing campaign to put pressure on the government. Doctors of the World have also produced a toolkit for GPs, the “Safe Surgeries” toolkit giving GP practices concrete ways to defy the data-sharing deal by keeping their patients’ addresses off NHS records, including using the GP practice address as c/o ad- dress.
  8. 8. Where’s the hope: Dialogue for solidarity – Session 2 Coordinated by ReShape 8 Women migrants in the UK, who do not have confirmed residency status, are not accessing healthcare, antenatal care and potentially life saving treatments because they are afraid of being identified. Additionally, many of these women have experienced traumas in their home countries and accessing healthcare should not be another traumatic experi- ence. The NHS must remain a safe place for undocumented migrants, asylum seekers and refugees. On policy level, this data sharing policy is also contrary to the Sustainable De- velopment Goals the government has signed up to, which is about reducing inequalities and ensuring healthcare and wellbeing for all, by guaranteeing access to healthcare, medi- cines and vaccines. The Women Health Equality Consortium recently published a report on the value of women’s health services highlighting how the move towards competitive tendering and reduced funding have made it harder for smaller women voluntary sector organisa- tions to compete. The report makes a series of recommendations to commissioners, asking them to consider women’s health needs in the broader context of gender inequality and other intersecting inequalities, and to understand the value of a holistic approach to ser- vice delivery, by looking at specialism and making linkages. It also recommends the de- velopment of infrastructure support for smaller organisations to help them bid as partner- ships or consortiums. The report demonstrates the impact that women’s voluntary and community organisations have on the health and wellbeing of the women and girls who access their services and its value. Kimberly Williams Crenshaw If we are not intersectional, some of us, the most vulnerable, are going to fall through the cracks. When we don’t pay attention to the margins, when we don’t acknowledge the intersection, where the places of power overlap, we not only fail to see the women who fall between our movements, sometimes we pit our movements against each other.
  9. 9. Where’s the hope: Dialogue for solidarity – Session 2 Coordinated by ReShape 9 Going forward – Key points from the discussion Globally there is a stronger understanding about the interconnectedness between gender and HIV and the fact that gender inequality is a key driver of HIV. It is recognised that gender-based violence is a cause and consequence of HIV, that gender discrimination and reduced access to education and information are driving HIV transmission and ac- quisition. This is not embedded in the UK response. The case still needs to be made to start thinking of women without any specific parameters, of women as a group, rather than as African women or migrant women, or other women sub-groups. Because there has not really been this recognition that women, as a group, are affected by HIV, the space for women organising has been limited. This is also partly due to the HIV response being epidemiologically driven, thus focussing on gay men and African women. But for women living with HIV, moving away from the prevention and transmission space onto women lives with HIV, gender has an enormous impact. PrEP in particular has illustrated how being in a room as women can be exhausting and often fruitless because of this absence of recognition of women as a group. Despite many discussions and meetings, it is not clear that any outcomes have occurred. Taking it forward is difficult. It is easier to do risk assessments for MSMs for whom STI diagnoses carry with them a calculable risk of catching HIV, which can then be explained and used to make MSMs think about their risk behaviour and recommend PrEP. However, the ma- jority of African women who get HIV get it from their partner. What are the criteria in these situations for risk assessment? Until we have a conversation with women and get them to understand or even just think they might be at risk and encourage them to go to their sexual health services, no women will get PrEP. Therefore, physicians and healthcare workers need to be educated to ask women about their risks and explain about PrEP. The data is not as good in women, a fact thought to be related to adherence issues, but never- therless, study results show that if women take PrEP everyday it works. PrEP gives wom- en control, especially as it is often difficult for women to negotiate condom use. To get bet- ter data and facilitate women access to PrEP, it is imperative to make a case for improved women’s participation in upcoming PrEP trials, starting with better trial design to take women’s requirements into account. Dr Jane Anderson, one of the meeting participants, noted that not enough attention was paid to negative HIV tests. A negative diagnosis requires attention with a risk analy- sis and a conversation. She felt we were still in an era where we were seeking viruses and testing to find the positive people rather than to protect the negative people. Positive tests should be seen as a failure of prevention. As services get streamlined and fewer people are having face-to-face information, we need to find a way to convey this message and pass on information to people.
  10. 10. Where’s the hope: Dialogue for solidarity – Session 2 Coordinated by ReShape 10 Jacqui Stevenson, presented some of her research on women’s experience of ageing with HIV in the UK, demonstrating how women face specific gendered experiences and challenges, including biological issues like the menopause, and social experiences such as providing care for others. Isolation, lack of access to support services, socio-economic challenges, stigma and fear of disclosing, were some of the key themes emerging from the study. The risks and fears around disclosing also stopped many women from engaging in sexual relationships and in participatory workshops taking place in the context of the study, the term “undetectable” was hardly ever mentioned or understood. Women also felt left behind in the dialogue around HIV today, with healthcare profes- sionals not being able to answer questions relating to women ageing with HIV, leaving them to face uncertainty. The research also shows that cuts to funding were having a particularly big impact on women living with HIV with the disappearance of peer support services. These were of- ten the only places where women were getting support or having safe social interactions. The latest stage of the research will involve life story interviews of women living with HIV aged 50 and over. Jacqui noted that in HIV women stories have been ignored and have not been at the centre of the epidemics. The more these stories are brought forward, the more women will be able to compete to have the space they need and have better ac- cess to services. As an increasing number of women living with HIV are getting older, a key issue for clinicians is to be able to guide and inform women around issues related to the meno- pause in the context of HIV. Dr. Shema Tariq, a Consultant in HIV and Sexual Health, and her team have been developing the PRIME study (Positive tRansItions through the MEnopause), a mixed-methods observational study exploring the impact of the men- opause on women living with HIV from all ethnic backgrounds. The research is a mixture of qualitative and quantitative research, including measurement, surveys, blood tests, and semi-structured interviews about women’s experiences. Preliminary data show that women were unprepared for the menopause. Participants of- ten attributed menopausal symptoms to their HIV medicines, which impacted on their adherence. They were reluctant to take Hormone Replacement Therapy and were often frustrated by the lack of awareness amongst their healthcare providers. Cultural taboos and isolation from their kin further exacerbated the situation for women from Sub- Saharan Africa. The women participating in the study expressed their needs for peer- support and access to information and supportive healthcare providers. The team hopes this study will inform the provision of appropriate services for women living with HIV thus ensuring that they are supported in maintaining optimal health and wellbeing as they get older. The meeting participants noted that migrant women often get their diagnosis while struggling with their immigration status. They often lack information and knowledge about HIV and find it hard to participate in groups, whether because of stigma in their community or because they are scared the government will find out and deport them.
  11. 11. Where’s the hope: Dialogue for solidarity – Session 2 Coordinated by ReShape 11 Participants felt strongly that after 30 years of the HIV epidemic and advances in HIV treatment and prevention, we should not still be talking about Stigma. This is where and why grassroots organisations should be helping migrant women access services other than clinics. Education and improved youth engagement need to be fostered if we want to move forward and improve women’s lives. The meeting concluded that women also needed to think of innovative ways to sus- tain their own places and provide services that are needed, taking into account women’s additional responsibilities such as providing a practical and affordable way to ensure childcare while attending a support group. Women issues are different: childcare, preg- nancy, being care providers, late diagnosis and, domestic violence. Organisations are needed where women are able to make the case for safe spaces run by and for women. The importance of safe spaces for women is specifically important in the provision of drug services where about 90% of women using these services have been vic- tim of domestic violence at some point in their lives while 60% of men using drug services admit to having committed domestic violence. One must feel physically safe to make progress. Women grow when they convene and meet other women, getting confidence from hearing other women’s stories. Next event Where’s the Hope? Dialogue for solidarity Session 3 of the series – African and Afro-Caribbeans Date & Time: 29 June 2017 @ 7pm Location: Stillpoint Spaces, 23 Clerkenwell Close, London EC1R 0AA Please print out a map when you come the first time. It’s hard to find if you don’t. Very near Farringdon Station.