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Major themes:
417 people were expected to attend, 321 of them living with HIV (slightly more than had originally been allowed for as the more accommodation had become available). Some people cancelled during the few weeks before the event and others from the reserve list were then offered place. In the end 356 people attended. (249 living with HIV).
71 people expected did not attend (7 professionals, 2 partners, 62 people living with HIV – 22 of these were newly diagnosed).
The 62 people living with HIV were written to in order to find out why did not attend and if anything more could have done to help them to get to the event. Of the thirty people that responded, just nearly two thirds said that either they or a family member was unwell, a third said that they had not received the information and didn't know they had a place. Of the rest some said they couldn't get time off work and others that they were not confident to attend. The newly diagnosed pre-day had not been tried before but was a great success. The evaluation of this day shows that all the participants felt more confident taking part in the conference as a result of this day, felt it was beneficial to have a day with other newly diagnosed people that catered for their needs and that they had a say in the planning. They all also rated all the presentations and sessions on that day as good or excellent and all said the day had helped in living with their HIV status.
As a result of the conference 88% of all participants said they felt better equipped to be involved in their own healthcare, 53% felt more confident about disclosure and 93% rated the event as a whole as good or excellent (58%).
The women's meeting has resulted in 8 regional coordinators being appointed in Manchester, Brighton, Leeds, Bristol, Luton, Scotland, Yorkshire and Derby. The Faith and Cultural issues workshop resulted in a group being set up to challenge stigma and discrimination in faith communities As a result if the Scottish participants meeting, a website has been set up to encourage more involvement in Scotland - click here to visit it
African people who got together at the conference have formed a campaigning group called Africans Getting Involved which is based at UKC. Click here for more information about Africans Getting Involved
Prior to the conference, UKC undertook some research, funded by the Department of Health, on Patient Involvement by people with HIV. That questionnaire asked people whether they thought a conference was a good idea (response 93% said "yes") and a number of topics to be covered was suggested. You can read more about our report on Patient Involvement here.
For people who had been diagnosed with HIV within about the last year, we offered an additional day (4 September) of intensive training by our experts on HIV, treatment issues and how to get the best out of the rest of the conference.
The full conference report is still being prepared - we will publish it on line in due course. Apologies for any delay here, it is taking longer than we hoped to put it all together. You can read the Positive Nation coverage of the event here and here
Attendance by people living with HIV was free of charge and sponsored by the event funders: A full report of the conference proceedings will be published in due course.
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HIV and AIDS info HIV and AIDSHIV and Hep CHIV and TB
UK Coalition of People Living with HIV and AIDS
Registered Charity
number 1081309