Background There are an estimated 3,258 people aged 24 years and under living with HIV in the UK. A third sector organisation based in London holds a weekly support service for 13–19 year olds living with and affected by HIV, with the aim to improve health, well-being and quality of life. It is vital that the service is easily accessible, approachable, useful and relevant to the group. Exploring service users’ experience of referral provides valuable information on referral practice and allows referrers and the supporting organisation to ensure pathways meet service user needs and preferences.

Methods Questionnaires were verbally conducted either in person or over the telephone during March 2013 with a convenience sample of 20 service users aged 13 – 19 who had registered with the organisation during 2011/12. The questionnaire was composed of 4 open and 9 closed questions.

Results Of the 20 respondents, nine were male and the mean age was 15.1 years. 15/20 were referred from a health professional at their HIV clinic. 1/20 contacted the organisation directly, for 16/20 their referrer called for them (3/20 couldn’t remember). Of the 16 who did not call themself, 10 said that they wouldn’t have called if someone hadn’t done it for them. On the first service visit, 20/20 attended a workshop and 7/20 saw a counsellor. When asked “why do you access the service now?” half or more of the participants responded: “to see my friends”, “to learn more about HIV”, “to be around other people who are affected by HIV” and “to talk openly about how I feel about HIV”.

Conclusion This study highlights the critical importance of referrals by healthcare professionals, and specifically the action by the healthcare professional of arranging for the young person to access support services for the first time, without which only a small percentage of those in need of support would access the service. Given that psychosocial support is highlighted in the CHIVA Standards of Care as a vital element of the package of care given to young people living with HIV, referral to support groups should be routine.