Guest Blogger Kath Charters reports from The UK Conference of People Living with HIV 2013
Hi Speaking Up blog friends, I have been invited to write a session from the UK conference of People Living with HIV alongside the recent blog on Personal Activism.
I co-facilitated the breakout session in the afternoon entitled “Women”. Myself and Silvia were guiding the session to ask “What are the main issues facing us as women living with HIV currently? What strategies can we employ to overcome them?” And to then discuss strategy and good practice for each individual to commit to actions at a personal, local and national level.
The answers to what issues were diverse but issues that united us none the less. They included:
Lack of involvement of women in clinical and social research leads to services that lack sensitivity and overlook the needs of women living with HIV.
The experiences women have of our bodies changing, our cycles being affected, medication causing early onset of menopause and osteoporosis, or co-morbidities, such as diabetes.
Our relationship to contraception in light of our living with HIV and our concern about the rise in pregnancy rates amongst young women who are transiting youth to adult services.
Disclosure issues surfaced: there needs to be better support for those receiving the disclosure; children, families and partners re: cross transmission and so on.
Lack of support for sero-different partners and the complicated messages around treatment as prevention.
Ageing and changing roles.
Dating – where do I find someone? Is it better if they are living with HIV too?
Lack of support for Long Term Survivors who may choose to not be taking medication.
Lack of information/availability around complementary support of the immune system; healthy eating, massage etc.
How to manage chronic fatigue and get it acknowledged as problematic.
Loneliness and isolation.
Gender based violence to include emotional violence.
There were lots more but we were limited on time so moved into looking at how to address the issues in a positive way.
Getting involved in decisions about our care.
Individually we can answer questionnaires and surveys. BHIVA is to launch a questionnaire about our experience of care – It will be used every year to monitor our health and experience of care and go beyond CD4 count and Viral Load.
The survey is still being drafted and you can input on the questions you think need to be asked here.
This is a consultation survey to ask about our general health and how we experience our healthcare – let’s all put our experiences into that survey.
We agreed to provide any information at local, regional national and global level, required re health initiatives and sharing information about such issues that we might receive personally across our networks.
We need to be informed about the contraception choices we are being offered or could be offered and their interactions with ARV’s. Agree to raise awareness as our own awareness is raised and make any information available in a user friendly language across out networks. Ask regionally and nationally for integration of sexual health/family planning services.
Be sociable! To combat isolation and get ourselves onto the dating scene if that is what we desire. Keep in touch with friends. Become involved in an activity group. Access complementary therapies. Be mindful of lack of social engagement/increased anxiety levels. Be in touch with ourselves and explore our spiritual path. Make a living will. Think about future needs and express them to someone or get them down on paper.
Access peer support around disclosure, symptom management, ageing, body changes, adherence strategies, etc – share experiences, and express concerns. Continue to fund, promote and support the organisations that work to support us.
If there isn’t a support group for the issue I am facing, let me create one!
How to combat fatigue? Be aware, ask for help, plan activities and share coping strategies make providers more aware of how debilitating this can be.
If you are experiencing gender based violence; you are not alone and do not be isolated – seek support, speak out, ask for professional intervention if needed.
National strategies/tools that we use include:
It Starts With Me” http://www.tht.org.uk/sexual-health/HIV-STI’s/HIV-AIDS/It-starts-with-me accessing robust messages around treatment as prevention.
To influence local policy join your local Health Watch or Health and Wellbeing board.
Get in touch with the She programme who have both a peer support and medical slides toolkit for women living with HIV to share with clinicians or healthcare providers. You can get the toolkit from firstname.lastname@example.org or Catherine.email@example.com.
The SHE programme is a resource developed by women living with HIV in collaboration with Physicians around a variety of issues, including: treatment, disclosure, human rights. Get involved and informed!
The affirmation we shared together to close the session “We are positive, We are safe, We are strong!” Will ring loud in my ears for together we create positivity, safety and strength.
So much inspiration and encouragement in that room, long will the impact remain with me.