Last year more than 350 people attended Changing Tomorrow, the national conference
of people living with HIV. Organiser Babs Evans explains
how the event in Leicester changed lives
After staging the Changing Tomorrow conference in 2004, the
four partner organiations (UKC, Positively Women, the National Long Term Survivors
Group and the National Aids Trust) wanted to evaluate the impact of the event
on participants living with HIV.
Some 208 participants completed questionnaires before the event, followed
by an end-of-conference evaluation form which was independen tly assessed
by the Centre for Economic and Social Inclusion. 
Four months later, participants completed post-conference questionnaires,
therefore taking part in a six-month process of evaluation, The people who
took part in this research reflected the diversity of people living with HIV
in the UK today. Here are the
findings.
Before the conference
• 70 per cent of respondents were satisfied with both their treatment
and experiences of health care
• Only six per cent were unhappy with their specialist HIV care
• 70 per cent were taking HIV treatment
• Only five per cent said they were in poor health…
•…but 85 per cent worry about long-term effects of HIV treatment
• White participants rated their understanding of the NHS higher and
had more confidence to get involved
• A disproportionate number of heterosexual men were not satisfied with
many aspects of their life
• Most participants had told somebody about their HIV status, with only
13 per cent receiving a negative reaction
At the end of the conference
• 65 per cent felt more confident about disclosure
• 97 per cent stated intentions to take further action (involvement
in the NHS, being pro-active about health, increasing levels of optimism).
After the conference
Analysis of 72 post-conference questionnaires identified actions taken by
participants attributed to Changing Tomorrow and changes in attitudes and
behaviour from pre-conference data.
Behavioural changes
In total, 83 per cent made at least one change that could have a positive
impact on their health. The majority made two or three, including:
• 42 per cent were spending more time with friends/family
• 42 per cent were exercising more
• 26 per cent were using more complementary therapies
• 25 per cent were smoking less
• 19 per cent were drinking less alcohol
• 14 per cent were practising more safer sex
• Eight per cent were using fewer recreational drugs
Confidence and involvement after Changing Tomorrow
• Only four per cent stated low levels of involvement
• There was an increase of over 65 per cent in higher levels
of understanding of how the NHS and HIV services fit together
• There was an increase of over 20 per cent in higher levels
of confidence to get involved, and nobody stated low levels
• The number that had told ‘lots of people’ about their
HIV status,
or had been featured in the Press increased by 44 per cent
• 88 per cent had been in touch with someone they met in Leicester
• 50 per cent had joined a network group
• 47 per cent said they felt happier
A total of 84 per cent of participants’ personal conference aims were
achieved and 96 per cent achieved at least one of their ‘action points’
from the workshops, and the average was three per person.
Examples of ‘action points’ met
• I found out what my clinic is doing on Patient and Public
Involvement (PPI)
• I’m more confident in approaching treatment
• I’ve stayed on treatment but changed one drug
• I’ve reviewed the Medical Foundation for Aids and Sexual Health
(MedFASH) standards against my own care
• I’ve talked to my doctor more
• I’ve informed people about life expectancy
• I’ve read more about medication
It’s clear Changing Tomorrow had a significant impact on the lives of
participants living with HIV.
This research is an important part of the report from Changing Tomorrow. It
was also presented on a poster at the joint BHIVA/BASHH conference in April
and was published in the May edition of HIV Medicine, the BHIVA peer-reviewed
journal.
• Thanks to Lucy Osman and Allan Anderson of Positively Women, Susan
Cole from the UKC, and Stuart McGrill from the
Department for Education and Skills, who helped to put
the questionnaires together.
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