SPAIIN Where are we now?

Key concepts in clinical networks Equitable Efficient High quality Locally delivered Patient/Carer involvement ‘designed to provide the best possible treatment and outcome for every child and young person requiring specialist care and to improve the accessibility and quality of the care they receive’

Priorities Be accessible with widely publicised website for both patients and clinicians Carry out a scoping exercise to define the number of patients affected by Paediatric HIV and Primary Immune Deficiency in order to provide accurate data Define clearly the roles of link clinicians and develop pathways of care Identification tools to raise awareness in primary care & investigation tool for general paediatricians Education and training strategy with appropriate resources for professionals, patients, families and carers Development of local Scottish guidelines for care and treatment developed on National Template Multi disciplinary structures involving all stakeholders from the beginning, with non-NHS stakeholders as equal partners – holistic approach and family centred Interface with local and regional strategic planning bodies Effective communication between local and specialist services Development of pathways and protocols for diagnosis and treatment Opportunities for peer support, involving voluntary sector

Work groups Data & information Patient, parent & carer Education and training Pathways & protocols/guidelines

Clinical Indicators Clear referral pathways available and used HIV: All infants born to known HIV positive mothers should be offered specialist follow-up in a SPAIIN supported clinic and receive antiretroviral prophylaxis with appropriate diagnostic testing and follow-up PID: All families of children & adolescents with a diagnosis of a primary hypogammaglobulinaemia, Di George syndrome, chronic granulomatous disease or severe combined immune deficiency should be referred to genetics for counselling Routine & regular multi disciplinary team (MDT) reviews carried out HIV: annual review of all HIV infected children & adolescents to assess growth & puberty, neurodevelopment and education, fat distribution, lipid and cholesterol measurements, renal, heart and bone health, HAART dose, side effects and adherence, knowledge of diagnosis or stage in disclosure process, and sexual health where appropriate (CHIVA). PID: annual review of all children & adolescents with primary antibody deficiency to assess growth, morbidity, trough immunoglobulin measurements, and requirement for lung function tests and respiratory radiological imaging Received evidence based care: compliance with standards & protocols HIV: 75% of infected children & adolescents should be completely virally suppressed after 12 months of first-line HAART therapy (CHIVA) PID: all children & adolescents with primary antibody deficiency on IVIG supplementation should have a median trough IgG measurement > 8g Transition to adult care HIV: all adolescents with HIV should have sexual health advice before their 14th birthday or before sexual maturity from a sexual health advisor PID: all adolescents with primary antibody deficiency should have an individualised transition plan to adult services Patients & Carers should receive an individualised care plan that is explained HIV: all parents/carers should have an individualised plan for disclosure initially discussed before 7ys of age and updated annually PID: all children with Di George Syndrome should receive an individualised care plan within 4 months of referral to immunology services detailing initial assessment and responsible physicians

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Thank-you for coming Thanks to Abbott & ViiV Get involved & be heard!