Don’t Forget the Children Untested children of mothers with HIV Wendy Majewska Courtyard Clinic St George’s NHS Trust

‘Don’t Forget the Children’ MISSION STATEMENT The HIV status of all the children of known HIV-positive adults in the UK should be known as a matter of clinical urgency BHIVA/CHIVA/BASHH consensus 2009

Current situation Undiagnosed HIV is a well-recognised problem in the UK among adults and is associated with late presentation and increased morbidity and mortality. It is less well understood in children BHIVA/CHIVA/BASHH consensus 2009

Current situation The children of HIV-positive adults attending HIV services are a readily accessible group of children at risk of HIV infection. BHIVA/CHIVA/BASHH consensus 2009

Current situation There is a current lack of robust protocols in place to ensure that children at risk of HIV infection are identified and tested. BHIVA/CHIVA/BASHH consensus 2009

Current situation Undiagnosed HIV infection in children is a significant cause of potentially avoidable morbidity and mortality. BHIVA/CHIVA/BASHH consensus 2009

Current situation Children of HIV-positive parents in the UK who were born abroad are those most at risk of undiagnosed paediatric HIV infection as they are less likely to have had antenatal HIV testing and treatment. BHIVA/CHIVA/BASHH consensus 2009

Current situation HIV testing of children is clearly in the medical interests of the child and, in the majority of cases, testing the children of HIV- positive parents is straightforward. However, if the parents consistently refuse, thereby putting the child at risk of having undiagnosed HIV infection, it may become a child-protection issue and need to involve the courts. BHIVA/CHIVA/BASHH consensus 2009

Testing children of adults attending HIV Clinics Specific issues with testing children  disclosure of parents HIV status  safeguarding children when parents refuse disclosure  guilt/stigma Little data on number of untested children in UK

Audit Jan – June 2009 Aim  Identify number of women attending Courtyard Clinic during this period  Identify how many of these women had children  How many of these children had been tested for HIV

Methods Case notes review of women attending HIV services at Courtyard Clinic from January to June 2009 Information gathered from HIV case notes, obstetric and paediatric records and face to face consultations Collected on central database

Results 461 women attended January to June 2009  461/461 (100%) case notes reviewed  364/461 (79%) had children 364 mothers had 828 children

Results 516/828 (62%) had been tested for HIV  455/516 (88%) had been tested HIV negative  61/516 (12%) had been tested HIV positive 663/838 (80%) lived in the UK  481/663 (75%) had been tested for HIV 165/828 (20%) lived outside of the UK  35/165 (20%) had been tested for HIV

HIV status of children

Untested Children ≤ 18 years 61/312 (16%) untested children were aged ≤18 years 61 children were born to 43 mothers 24/61 (40%) of these lived in the UK

Ethnicity of mothers All mothers (364) Mothers (43) with untested children aged ≤ 18 years

Reason for not testing child ≤ 18 Child not perceived to be at risk by mother Lost contact Child declined to be tested Unknown

Conclusion 24/828 (3%) untested children aged ≤ 18 years live in the UK Urgent and on-going work needs to continue Priority needs to be given to working with parents to facilitate testing

Recommendations (summary) Protocols and procedures must be in place to ensure all children of HIV-positive parents are tested A multi-sector, multidisciplinary team needs to be identified and be responsible for setting up protocols and managing cases if and when they arise Pathways need to be developed BHIVA/CHIVA/BASHH consensus 2009

Recommendations (summary) All HIV units will need to perform a ‘look back’ exercise to establish the HIV status of any children whose HIV-positive parents attend that service All new HIV-positive patients attending adult HIV services should have any children identified, tested and the information clearly documented BHIVA/CHIVA/BASHH consensus 2009

Recommendations (summary) Joint protocols should be in place between health and social care All healthcare professionals have a duty to ensure the safety of children and ensure safeguarding issues are addressed Follow-up support should be provided for all children and parents to help with disclosure or adjustment issues BHIVA/CHIVA/BASHH consensus 2009

Thank You All staff involved in this project in particular Katia Prime, Rosemary Handyside, Shalini Andrews, Helen Webb, Simone Ghosh and the multi-disciplinary team at St George’s NHS Healthcare Trust.