Delivered at Sex, Drugs & Scotland's Health Virtual Conference, this presentation was delivered by Alastair Hudson. More information about the virtual event is available here: http://ow.ly/YntW50GWhJ0

1. Positive and negative
feelings among people living
with HIV in Scotland
Findings from the People Living with HIV
Stigma Survey UK 2019
Alastair Hudson
Irina Lut

2. Who took part? (n=2,423)
5%
52%
43%
AGE
15-24
25-50
50+
57%
11%
23%
3% 4% 2%
ETHNICITY
White British / Irish
Other White
Black / Black British
Asian / Asian British
Mixed
Any other
Region N %
East Anglia 156 6
East Midlands 49 2
London 748 31
North East 23 1
North West 97 4
South East 327 14
South West 228 9
West Midlands 341 14
Yorkshire and the Humber 322 13
Scotland 70 3
Northern Ireland 46 2
Wales 16 1
Recruited 2015 2019
Clinic (hospital) 59 % 88 %
Community organisation 21 % 7 %
Social media/other 20 % 5 %

3. Scottish participants (n=70)
6%
40%
54% AGE
15-24 25-50 50+
84%
9%
3%3% 1%
ETHNICITY
White British/Irish
Other White
Black/Black British
Mixed
Any other

4. Antiretroviral treatment (ART)
100% are currently on ART
4%
17%
79%
Time since diagnosis in years
1
2-5
6+
99%
1%
Undetectable viral load
Yes, currently Yes, but not currently
“Having just come through my 10 years with
HIV ... once I had decided to own it and share
it, I have felt in total control of my status. It
has empowered to me to go forward, and
HIV is a part of me...not all of me... nothing I
need to worry about on a day-to-day basis.”
-Male, age 60, diagnosed 6-10 yrs

5. Undetectability
• 77% believe their understanding of undetectability
has positively impacted their lives
74%
13%
7% 5%
0
20
40
60
80
100
Doctor Nurse Support
group
worker
Other
How did you come to understand what
undetectability means?
84%
14%
1%
What does undetectability mean?
Cannot transmit
Less likely to transmit
Just as likely to transmit

6. Positive feelings in relation to
HIV status
89%
77% 76% 74%
0
20
40
60
80
100
In control of health As good as anyone
else
Positive about the
future
Positive about life

7. Positive feelings in relation to
HIV status (Scotland v England)
0
20
40
60
80
100
In control of health As good as anyone else Positive about the
future
Positive about life
Scotland England

8. Negative feelings in relation to
HIV status
33%
30%
40%
21%
49%
0
20
40
60
80
100
Shame Guilt Blame self Blame others Low self-esteem

9. Negative feelings in relation to
HIV status (Scotland v England)
0
20
40
60
80
100
Shame Guilt Blame self Blame others Low self-esteem
Scotland England

10. Worries vs experiences
31%
20%
20%
43%
16%
24%
41%
9%
6%
4%
24%
1%
16%
29%
0 20 40 60 80 100
Treated differently in healthcare
Treated differently at social gatherings
Treated differently at family gatherings
Sexual rejection
Physical abuse
Verbal abuse
Being gossiped about
WORRY EXPERIENCE

11. Experiences due to HIV status
“The promotion of PrEP is
definitely helping bring the
advance of HIV to an end, as
well as every other course of
action taken by those brave
enough to stand up and talk
about their own lives living
with HIV in a public forum or
media campaign.”
- male, age 67, diagnosed 11-20 yrs
“I feel education in
schools is very important
and believe that over
time, the more people
know and understand
hopefully there will be
less stigma. I also believe
that raising awareness
e.g U=U is very
important.”
- male, age 67, diagnosed 11-20 yrs
“Employers should be more educated on HIV related absence . Silly jokes from
work colleagues who have said to each other ‘You have man flu, You should
get yourself checked for AIDS’ is common.”
- male, age 51, diagnosed 11-20 yrs
“I have quite a few friends
who are HIV+ and they
were very supportive when
I tested positive. Having a
settled comfortable life has
made living with HIV pretty
easy.”
- male, age 69, diagnosed 2-5 yrs
“[About sharing their
status] On the whole very
positive and liberating”
- male, age 27, diagnosed 1 year

12. Sharing HIV status and support
0
20
40
60
80
100
Family Parent(s) Friends Partner
Aware Supportive

13. Effecting change
“What are the three most important things we should be doing to address stigma and
discrimination for people living with HIV? “
The TOP 3 answers are:
• HIV education in schools (84%)
• Raising awareness and knowledge of the public about HIV (69%)
• influencing and advocating for evidence-based media coverage of HIV (49%)
• In England, the third most common answer was providing people living
with HIV by with emotional, physical and referral support

14. Acknowledgments
Thank you to all the participants of The People Living with HIV
STIGMA Survey UK 2019
and to our partners across participating
NHS clinics and cross-sector community organisations