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CHIVA Network Leads

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

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CHIVA Network Leads

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  1. 3rd Annual Conference of the Children’s HIV Association ‘Young People and HIV: Back to the Future’ CHIVA Network Leads Friday 15 May, The Bridgewater Hall, Manchester

  2. 3rd Annual Conference of the Children’s HIV Association ‘Young People and HIV: Back to the Future’ Dr Paddy McMaster Chair, Children’s HIV Association Friday 15 May, The Bridgewater Hall, Manchester

  3. NETWORK REGIONS Updates: May 2009

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

  5. SCOTLAND

  6. 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

  7.  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

  8.  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

  9.  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

  10. NORTH WEST Engagement Workshop Increasing numbers New staff

  11. Agenda - Midlands Children’s HIV Network Meeting Friday 16th January 2009 1. 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

  12. 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 11.30-12.30 Cases JT PL SW AB 13.30-15.30 Talks 13.30-14.00 New PENTA guidelines Steve Welch 14.00-14.15 EJAF Babs Evans 14.15-14.45 Paediatric Formulations Prof. John Marriott 14.45-15.00 Don’t Forget the Children Sally Scott MIDLANDS

  13.  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 - 1st cross boarder collaborative meeting next week! “Growing up with HIV - from conception to conceiving” IRELAND

  14.  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

  15.  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 - 1st 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

  16. 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

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