1. Transitions into adulthood for young people living with HIV in England How transitions are experienced and managed by young people and those supporting them Emily Hamblin NCB 18 October 2013

2. Free UK-focused network Concerned with children and young people living with or affected by HIV from conception to adulthood Develops and disseminates policy and practice, runs training and events, facilitates networking and produces information bulletin Provides a voice for young people through participation work 2010-2013 Department of Health funded project on transition www.ncb.org.uk/hiv Children and Young People HIV Network

3. Who are young people living with HIV? What is their transition journey? Challenges expressed by practitioners Challenges expressed by young people How do we respond? HIV Network resources

4. Health Protection Agency data: HIV-diagnosed young adults (16-24 years) seen for HIV care by exposure category, 2012 How did young adults (16-24) acquire HIV? 2012 total = 2,403 aged 16-24 accessing HIV care Approx. 130 new diagnoses in 16-19s per year

5. 1,131 children and young people in UK and Ireland accessing paediatric HIV care in 2013 469 had made the transition to adult care (about 50 per year; at average age 17.6) Of those in paediatric care: 79% Black African 51% born abroad 50% access clinics in London; 39% in rest of England. Young people growing up with HIV Data from the Collaborative HIV Paediatric Study (CHIPS) Reports up to March 2013

6. Prevention of vertical transmission = few babies Development of treatment = new generation living into adulthood Age of children in paediatric follow-up by year, 1996-2012 (CHIPS) Young people growing up with HIV

7. Often havent been told they have HIV until 10+ HIV invisible within services, schools, couples, families, communities Migration; bereavement; poverty; poor parental health and caring responsibilities; social services involvement Extremely low prevalence outside major urban areas Asymptomatic neurocognitive impairment; behavioural disorders; psychiatric diagnoses Long-term impact of virus and treatment; medical advances (cure?) chiva.org.uk Young people growing up with HIV

8. 123 practitioners from across England: o childrens and adult services o health, voluntary sector and statutory social care 45 individuals aged 13-28 Parents and carers Consultation for Just Normal Young People

9. Young peoples transition Regional networks for paediatric HIV care Access to specialist paediatrician, nurse and wider MDT Transition clinic OR Family clinic OR Separate centres Sexual health OR Infectious diseases Possible family support before child is aware of diagnosis Support groups; Support camp; Online peer support; One-to-one Stop accessing – though some volunteer with younger peers Most find adult support services too old Health Voluntary sector Limited access to statutory social care; few specialist HIV social workers – most in adult social care

10. THE POPULATION AND THE CONTEXT CHALLENGES IN SERVICE DELIVERY Diverse needs – e.g. age, transmission route Developing experience and processes Getting resources and support Service coordination Other practitioners' knowledge of HIV Can hinge on key individual practitioners RISKS Dependency on HIV services Mental health issues Underuse of services Loss to follow-up Poor adherence Young peoples resilience, confidence and hope Professionals skill and dedication

11. Being able to talk openly about HIV with family, friends and partners I found out [searching online], and then I just pretended I knew […] No one actually said, like, Youve got HIV. Mum pressures me not to tell anyone. [My dad is] always there for me, hes always willing to talk. We put ourselves down, put ourselves in a box before we even know how the person will react. Background image from CHIVA website – young people at Support Camp

12. I want to find someone, but, I dont know. [...] Its just HIV that holds me back. Stigma Ive heard there are some signs that you can tell someones got HIV. Youd have to have read all the medical stuff, but... [I think] This womans looking at me. [...] Im a black girl going into a sexual health clinic. Anti-stigma campaigns Childrens HIV Association clinical guidelines and quality standard for psychosocial support providers

13. Majority of young people on treatment with varied results Good adherence crucial for long-term health and treatment options (95% aim) Every day for the rest of your life, at set times Can involve high pill burden, unpleasant taste, side effects like diarrhoea – Why bother when I feel fine? Peer support, treatment buddies, directly observed therapy, motivational interviewing, financial incentives pilot, pill boxes, alarms, text reminders, apps... I brush my teeth, I take my medicine and I go to bed. […] Its just a system now. HIV treatment

14. Learning about HIV and treatment Image from healthline.com Do it in stages because its not all about cramming everything in and chucking stuff at us every single time. […] If you annoy me, Ill just block you […] Ill look back and be like, What did they say again? Practice sharing for professionals Information resources for young people Voluntary sector – time, space, explain jargon Repetition!

15. Ive had three appointments; Ive had three different doctors. […] I need that attachment thing. […] When they ask me about my sexual health, I feel like, Uh, I dont know if I should talk to you. Long-term support for young people and parents/carers from a range of services Collaborative working Relationships with individual practitioners Image from timstar.co.uk Shes like part of my family, like, I couldnt imagine my life without her.

16. Everyones just sat there, no ones smiling, its in a grey hospital. I have no idea how things are going to change as I get older. [Transition] showed me that I was growing up […] Doctors can give advice and stuff but ultimately I was the decision-maker. Ive always gone to adults and theyre nice there, they always ask me about school. Perceptions of transition and adult services Image from qehkl.nhs.uk (unrelated to quotes)

17. Services [...] need to realise that HIV is a part of you but thats not the only thing that might bother us […] Were just normal young people. Being normal Peer support Meeting people who are just the same as you, who feel, who seek acceptance from the world but they dont know how to get it. NHS England service specification for paediatric HIV addresses transition and identifies voluntary sector and social care as interdependent services Participation and practice development work

18. Feeling recognised and valued We live with our children; we know them. Dignity Im not a victim of my circumstances constantly. Support If you have a healthy parent or carer, you have a well looked after child. Parents and carers

19. Six leaflets on: Studying Work and careers Telling others about HIV Independent living Rights (discrimination, confidentiality, HIV transmission) Transition into adulthood. Your Life leaflets

20. Their Life leaflet For parents and carers of teenagers and young adults who have HIV Their Life addresses: Feelings about children growing up What young people need from parents and carers Communicating about HIV, sex and relationships Changes in healthcare and their impact on young people and wider family

21. LifeLinks A web directory of information and services for teenagers and young adults who have HIV www.ncb.org.uk/lifelinks

22. Studying with HIV A website for people who work with students, and HIV practitioners supporting young adults

23. Thank you ncb.org.uk/hiv hiv@ncb.org.uk An HIV Network event for young people, April 2012 Above: Design inspiration for leaflets Right: The elephant in the room illustration