As part of the planning process a patient involvement questionnaire, funded by the Department of Health, was circulated by Positive Nation which asked people living with HIV what the conference should provide. 93% of respondents to the questionnaire thought this conference was a ‘good idea’ (details of the Patient Involvement questionnaire are available online here ).
Other themes and ideas were provided by the steering group and from participants at three regional seminars held by NAT in Bristol , London and Newcastle . Briefing papers for Chairs, Speakers, Facilitators and Rapporteurs were produced and agreed by the steering group. These emphasised the desire to make the conference as upbeat as possible. The following is an example from the briefing paper for facilitators:
Most sessions are designed to be as inclusive as possible: only a few are targeted at specific groups of people with HIV. This means for example, that we expect workshops on treatment to address treatment issues and differences for children, women, men, people of different ethnic origins etc. If an inclusive session appears to be veering towards issues for one of these groups only, a way to bring it back on course might be to ask people from another group what they think. In a targeted session, the results will be made available to everyone, so where appropriate, please ask participants how they think the issue might be relevant to other group
Changing Tomorrow was promoted to people living with HIV via full page adverts in Positive Nation, via posters distributed to HIV/GUM clinics and HIV agencies, via adverts on the UKC website and via the partner organisations. Word versions of the application forms were sent out by email and others were sent via post. Applicants were asked to indicate whether they preferred to receive information by post or email and the option to be notified by telephone was also offered to anyone who was visually impaired. By the closing date of 9 July 2004 , 378 people had applied for the estimated 302 places allocated to people living with HIV.
Criteria were set up to ensure that those offered a place reflected the diverse community of people living with HIV in the UK today (estimated to be around 50,000). Babs Evans ( NAT ), Bernard Forbes (UKC) and Tom Matthews (NLTSG) met on the 20 July to decide who should attend using the fairest possible selection process. A list of all applicants ID numbers was produced with details of city or town, country and all the information from the tick boxes and sections on the application form, but with no names or addresses. The process took seven hours!
In order to meet the needs of applicants, questions had been asked in relation to access and other requirements. As a result of this, information was produced in large print for 10 individuals throughout the process, a wheelchair-accessible room was provided for one individual and a number of others requested ground floor rooms. Three people asked for an induction loop to be provided, so this was made available in the main conference hall. Nobody asked for a sign language interpreter.
Forty-five people stated their dietary requirements, which were catered for during the event. These included vegetarian, Halal, low cholesterol meals, diabetic and allergies to nuts, cheese, seafood and wheat.
Recognising that many people would not be able to afford to travel to the event, £3000 was allocated for participants travel and people were asked to indicate on the application form whether they would like to apply. They were then sent a travel fund form to fill in and asked to supply proof of income support or indicate if they were not entitled to any benefits. All those who applied for travel assistance before the closing date were provided with rail tickets.
People were notified about their place at Changing Tomorrow by 30 July and asked to complete a pre-conference diary. This was the start of a process of evaluation that took place to assess what impact Changing Tomorrow had on the lives of people living with HIV who attended, and included an end of conference questionnaire and a follow-up diary 4 months after the event. A data sharing protocol was written and the four partner organisations agreed that all data and information collected was for the purposes of organising and evaluating the conference only. Once the final report was distributed to participants all personal information was deleted, although unidentifiable evaluation data would be retained for future use. To enable the four partner organisations to communicate with people after the conference, participants were asked if they wanted to receive information from NAT , NLTSG, PW or UKC. The details of those that ticked the relevant boxes were then sent to the organisations. Some people wanted email contact only and others wanted information by post. This resulted in each organisation getting around150 new contacts.
Participants were sent the draft programme and asked to select which workshops they were interested in attending, which helped to plan where each session should be held. People were also asked to make suggestions for any topics that were not featured. Out of the 208 responses received, only 18 made suggestions for additional workshops, indicating that the planning process had ensured that the programme addressed many of the issues participants had. Most of these 18 suggestions were already featured but the responses did lead to two additional meetings for Scottish and Welsh participants being added to the programme.
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