To enable newly diagnosed people to feel settled and comfortable at the conference they were asked to register in the afternoon before the newly diagnosed day itself. The crèche facilities were provided from the Saturday onwards to facilitate this. On arrival participants registered and then volunteers from the partner organisations showed them to their accommodation and used this opportunity to chat and make them feel welcome. Once they had unpacked, participants were asked to make their way to one of the smaller conference rooms.
The conference chairs, Bernard Forbes, UK Coalition of People Living with HIV and AIDS (UKC) and Linda Potticary, Positively Women (PW) welcomed everybody and then representatives of the four conference partners gave a brief talk about their organisation and their involvement in the conference.
After this, volunteers from the National Long Term Survivors Group (NLTSG) ran a closed ‘Getting to Know You’ session for the participants. Peter Jones from the group led this by introducing himself and then inviting each of the participants and volunteers to briefly introduce themselves. People were then asked to split into small groups with the NLTSG volunteers and share with everyone else in the group the following:
What brought you to Leicester ?
What are your concerns?
What would you like to know?
What would you like to achieve in your time in Leicester ?
One of the volunteers describes his experience of this:
Only three people came into the group with me but they represented considerable diversity, being a white heterosexual man, a black man from one part of Africa and a black woman from another. Their issues were: illness, drugs, employment, isolation, loss, concerns for their children, lack of legal status and choosing between seeing their children and sacrificing their HIV drugs. It was amazing just how quickly they were prepared to interact by sharing their concerns. They were also truly amazed to meet the volunteers from NLSTG and know how long we had been living with HIV
After 45 minutes the groups came together to discuss the issues that had been raised. As each issue was mentioned one of the volunteers checked the conference programme to see if it was to be covered in the next three days.
The main issues of concern for newly diagnosed people were:
Treatments (long-term effects, body shape, lipodystrophy, post code lottery)
Isolation and stigma
Disclosure (when, whom and how to tell)
Relationships and negotiations with partners
Meeting others and peer support
To develop networks outside and after the conference
Support for negative partners, carers and families.
The effects on our sex life or the lack of one
Issues around safer sex and empowering women
Treatment holidays
Life expectancy (be honest!)
Having children, safely
Anxious to meet and then be a long-term survivor!
Everything that had been discussed was in the programme, however participants were made aware of the vacant slots in their newly diagnosed day and encouraged to approach any of the volunteers if they needed further information or clarification.
Newly diagnosed people, volunteers and staff all came together for the evening meal and then formed into teams for a pub quiz. This was specifically designed to encourage groups of people to get talking and volunteers and staff were briefed to sit with participants and other people that they didn’t know. Each group was encouraged to come up with an amusing team name. The quiz was devised by Aidan Keightley of the UKC and involved multiple-choice questions. The evening went very well and enabled newly diagnosed participants to relax and familiarise themselves with the venue and get to know staff and volunteers in an informal setting.
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