Magda Conway, Children & Young People HIV Network

Describe your role
I coordinate the Children & Young People HIV Network. The Network aims to give a voice to children and young people living in the UK who are infected with and affected by HIV, in policy and practice development. Part of this work is that I bring together HIV infected and affected young people to share their experiences and feed into the work of health, social care and policy.

What makes a good participation worker?
Good communication, the ability to be energetic and yet sensitive; think on your feet and an innate ability to be able to produce an activity or interactive game with two toilet rolls, a plastic bottle and some string  – very much like a Blue Peter presenter. What are the barriers to involving children and young people?

With HIV infected and affected young people the key barrier is the silence. Its not unusual for the siblings of an HIV infected child or young person to not know; schools are not told; friends are not told. This level of secrecy means that many of these young people feel unable to talk about their experiences. They are also not present in mainstream services – well not as living with HIV.  This fear and secrecy means you need to build relationships and trust with those working with them first and this takes time.

What are the benefits?
I have in the past worked with various groups of young people in different setting.  With this particular group, the benefits are the absolute insight they give - we are all experts on our own lives, and the experiences and opinions they share guide our work and our understanding. Many are emotionally mature, as they have had to grow up quickly, and offer perspective above and beyond their years. There is also an obvious benefit to them as individuals as their voices are rarely heard, and their inclusion and participation makes a noticeable impact on their lives. For some the young people we meet, we offer the only opportunity for them to actually be themselves and not have to hide parts for fear of others responses. Feedback from their health professionals is that inclusion in participation has had a profound effect on some of the young people.

What tips do you have for effective participation of children and young people?
Last year I brought together 25 young people from all around the country to a weekend residential. Most had never met each other; we did not know them and they were referred mainly by nurses and Doctors. They traveled from all across the country to London. The group was diverse, we had unaccompanied asylum seekers, young people from care, various socio-economic backgrounds, various ethnicities, but all were HIV infected and under 18. Many people told me I was mad, and when I undertook the risk assessment I started to think I was mad too. Yet I’d say this is probably one of the best things I’ve done, so my tip would be to take risks - because for the hard to reach groups, if these succeed, you can make a real difference to young peoples lives.

What is effective participation?
Many things have been written on effective participation, but for me its quite simple. It has to be real, to really mean something to those involved. One young woman said to me, ‘when I decided to come [to an event] I thought I’d just sit back and say nothing, just listen.  I haven’t been able to shut up – I never talk like this’.

Participation Works is a partnership of…
British Youth CouncilChildren's Rights Alliance for EnglandKIDSNational Council for Voluntary Youth ServicesNational Youth AgencyNCB