‘It’s like a new life that you never

knew about until now’

: L i v i n g w i t h H I V - T h e C H I V A Y o u t h

C o m m i t t e e ( C Y C ) o f Y o u n g P e o p l e .

STRUCTURE OF THE CYC

We are 12 young people aged from 12 to 18 from across the UK and Ireland, all living

with HIV

We hold our positions on the youth committee for 2 years and there is a chairperson

and deputy chairperson.

We aim to have a good spread of gender, age and geography

People apply every year during the summer and the current youth committee look at

the anonymous applications and select new members by making a group

decision.

We are funded by BBC Children in Need

The aim of the CYC is to provide a voice for children and young people growing up with

HIV in the UK and to allow them to influence the treatment and care they receive.

We work closely with the CHIVA Executive Committee and a variety of other

organisations and agencies.

KEY ACHIEVEMENTS

We have produced youth friendly guidance and

resources for healthcare professionals to use in clinics

when talking to children and young people. These are

the Side Effects Sheet, Your Rights Card and Treat Me

Like This Guidance. We have found that these

resources help Doctors to have conversations with

young people about topics which sometimes are

difficult like side effects, adhering to medicine, and

sex, HIV and the law. We have copies of these with us

if you would like to see them.

We have a young people's website - 'If Only You Knew'

which we recently spent a weekend updating with our

stories. We talk about how we felt when we found out

about our HIV, who else we have told and how that's

gone, how we deal with relationships, what it's like at

school and at home, and also about medicine and

how we feel about taking it. We also talk about the

CHIVA Camp and what an impact that has had on how

we deal with HIV. The website is designed for children

and young people - it is split into age sections.

We have an active twitter account - @freedom2spk We

use this account to combat stigma and educate

others and we have a rota where different members of

the youth committee can take it in turns to tweet. We

recently took part in an NHS twitter chat around the

hashtag #CYPMefirst which is about putting children

and young people first in health settings. We

responded to an online debate about when and how

children and young people like to be seen alone with a

healthcare professional and we were able to put

across the views of children and young people living

with HIV.

Through our work with the Association of Young People's

Health we have contributed our views about children

and young people's experiences in A&E departments,

and how we feel about the NHS online record keeping

systems and our confidentiality, particularly in primary

healthcare settings.

We have represented the UK at the last two International

HIV/AIDS Conferences and plan to have a strong

presence at this year’s conference which is in

Amsterdam this July!

We would now like you to take a moment to answer this

question in small groups or in pairs. We will not be

asking for feedback, but we just would like you to

think about the issues. We can circulate if you have

any questions for us:

What do you think are the main issues for

children and young people growing up with HIV

in the UK?

You have 10 minutes.

Thank you for those discussions.

For the last part of our workshop we are going to read

out some testimonials from our young people’s

website ‘If Only You Knew’. These are about lots of

different issues which we face. We are going to play a

slide show of photos from our CHIVA Support Camp,

which is a residential which takes place every August

and is for 11-16 year olds living with HIV in the UK and

Ireland.

Thank you for listening to us.