CHIVA Network Leads 3 rd Annual Conference of the Children’s HIV Association ‘ Young People and HIV: Back to the Future’ Friday 15 May, The Bridgewater Hall, Manchester

Dr Paddy McMaster Chair, Children’s HIV Association 3 rd Annual Conference of the Children’s HIV Association ‘ Young People and HIV: Back to the Future’ Friday 15 May, The Bridgewater Hall, Manchester

NETWORK REGIONS Updates: May 2009

SCOTLAND  47 HIV positive children currently followed in clinic  2 nd network meeting in Perth – May 2009  Proposal for ‘paediatric immunodeficiency’ network

SCOTLAND

Newcastle/Leeds/Sheffield -linking to St.Georges(London)  Recent network meeting with 3 other centre's and St.Georges  Established HIV pathways for network  Agreed with commissioners plan to share the paediatric pathway with the adult HIV network NORTH EAST

 15 children/ 33 deliveries  2 PID consultants  0.75 WTE nurse Recent activities  Produced teenage HIV information booklet - “Do You Know It All?”  Regular support group for affected/infected young people  Carrying out an audit on screening untested children in families with HIV+ parents NORTH EAST: NEWCASTLE-UPON-TYNE

 34 children  0.5 WTE nurse Recent activities  Positive response to service-user questionnaire for parents and adolescents, re: setting up a family clinic  Plans to develop the service with hours from social worker, dietician and psychologist  Liaising with local voluntary organisation “Skyline” to develop services/set up groups for young people NORTH EAST: LEEDS

 22 children/ 14 deliveries  2 PID consultants  1.0 WTE nurse Recent Activities  Currently have 2 days/week pharmacist  Produced book “Betsy has Boo Boo’s” written by positive Mum  Support group for affected/ infected teenagers now running NORTH EAST : SHEFFIELD

NORTH WEST Engagement Increasing numbers Workshop New staff

Agenda - Midlands Children’s HIV Network Meeting Friday 16 th January Welcome and apologies SW 2. Minutes of last meeting SW 3. Reports from centres Birmingham YH Coventry PL Leicester MG/JT Derby KG Nottingham Northampton FT Stoke PM 4. CHIVA 5. Proposed perinatal nurse role MIDLANDS

6. Commissioner DW+ 7. Voluntary sector AB, PS, DS 8. Social services LR 9. Shared events YH/BE 10. Research & Audit KG 11. Any Other Business 12. Forthcoming meetings SW Cases JT PL SW AB Talks New PENTA guidelines Steve Welch EJAF Babs Evans Paediatric Formulations Prof. John Marriott Don’t Forget the Children Sally Scott MIDLANDS

 Rainbow clinic - national service HIV and ID based in Dublin (OLCH, TCH)  2 other neonatal/paediatric clinics (Cork and Galway) for exposed children  Northern Ireland – Royal Belfast Hospital for Sick Children - SpR’s to Rainbow Clinics - 1 st cross boarder collaborative meeting next week! “Growing up with HIV - from conception to conceiving” IRELAND

 13 maternity units in Republic including Dublin:3  Rainbow collaborations - Guidelines (Adult/Obst/Paed) - Pregnancy meetings (Adult/Obst/Paed) - Communication with specialist midwives - Data collection IRELAND MATERNITY ADULT  Dublin: 3, Cork: 1, Galway: 1  Rainbow collaborations/ challenges - Transition of adolescents - Children of parents attending adult services

 35 children/young people from across the region  Set up support group for young people- 4 young people gave input into what they want from a group - 1 st meeting end of May - hope to link this in with young people in Wales  New disclosure DVD soon to be used  Consultant, registrar, 2 CNS’s, dietician and psychologist have close contact with adult team  1 family clinic quarterly with adult team, otherwise 2 clinics a month plus regional clinics SOUTH WEST

Regional Service  Home visits occur in Cheltenham, Wiltshire, Gloucester, Bath, Taunton, Yeovil, Dorset, Plymouth, Truro, Swindon and Weston-Super-Mare  Visits cover disclosure, psychology input, nutritional support PILL school, transition, urgent repeat bloods  Who attends: CNS plus psychologist, dietician or CNS on their own.  Help families travel expenses to Bristol clinics SOUTH WEST