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Children and families in the UK

Children and families in the UK. Where we are up to What is a family clinic? Why have one? What is the ideal family clinic? What is the reality? Current and future needs. Where are we up to?. UK Epidemiology Changing pattern Knowledge Transmission interruption

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Children and families in the UK

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  1. Children and families in the UK • Where we are up to • What is a family clinic? • Why have one? • What is the ideal family clinic? • What is the reality? • Current and future needs

  2. Where are we up to? • UK Epidemiology • Changing pattern • Knowledge • Transmission interruption • When to treat/what with/when to switch • Adherence/toxicities • Drugs • More/kids formulations • Laboratory • Resistance tests/TDM • Identified need for service provision for families

  3. Case Distribution within UK & Ireland (5%) Scotland (18%) Rest of England (6%) Ireland (1%) Wales (71%) London

  4. HIV prevalence in pregnant women in 2002 UA survey data (Renewing the Focus, 2003) • London • overall 1 in 250 pregnant women • 1 in 190 in Inner London • 1 in 340 in Outer London • Rest of England • overall 1 in 1600 pregnant women • highest in Eastern Region • Scotland • 1 in 1700 pregnant women

  5. Estimated prevalence of HIV in women giving birth, England and Scotland, 1999-2002approximate numbers only - based on UA survey data

  6. Seroprevalence among women giving birth in 1998-2002 in North Thames Region, according to maternal world region of birth • About 490,000 samples tested over 5 years • Overall HIV seroprevalence was 0.21% • 0.03% of 67,000 women born in Asia • 0.03% of 313,000 women born in the UK • 0.11% of 27,000 women born elsewhere in Europe • 0.16% of 12,000 women born in the Americas (including Caribbean) • 1.91% of 39,000 women born in Africa Cortina-Borja et al. AIDS 2004, 18:535-40

  7. Children born to HIV infected womenand reported to NSHPC by June 2004 • 5241 children (of whom 10% born abroad) • 57% reported from London • 24% reported from rest of England • 6% from Scotland • 1% from Wales and Northern Ireland • 12% from Republic of Ireland • 54% not infected • 23% indeterminate (majority born to diagnosed women since 2000, and likely to be uninfected) • 23% infected

  8. Currently in UK • Large number of women and families from Africa • Some of the accompanying children positive on testing • Also sometimes presenting their children late • Many being first diagnosed at antenatal screening • Number of heterosexuals becoming infected is rising • Number of late presentations increasing (e.g., in early teens) • Reduction in mother to child transmission for babies born in UK.

  9. Children and families in the UK • Where we are up to • What is a family clinic? • Why have one? • What is the ideal family clinic? • What is the reality? • Current and future needs

  10. What is a “Family HIV Clinic” A service which provides an all-in-one service within one clinical setting for kids and their carers (who are infected with HIV) Aim: To enable families affected by HIV to receive co-ordinated treatment and care focussed on the individual family needs Recommended standards for NHS HIV Services; The medical foundation for AIDS & Sexual Health (MedFASH) 2003

  11. “One stop shop” Provide services which are “family related”, including: Management of HIV in Pregnancy Care and follow-up for neonates born to HIV infected women All services for infected children and parents/guardians (Treatments, diagnosis, disclosure through to transition and all aspects of psycho-social support) What should an all-in-one family HIV clinic offer?

  12. Children and families in the UK • Where we are up to • What is a family clinic? • Why have one? • What is the ideal family clinic? • What is the reality? • Current and future needs

  13. Why have a family clinic? • There are complex needs • Pregnant mums • Infected and non-infected kids • Adults • The issues are well beyond ‘one’ health care specialist • Families represent a single ‘unit’ with many components

  14. Family Clinics – Why? • Recognised that multidisciplinary care is going to provide the best service • Common issues with families • Manageable appointments on same day • Fewer appointments less travelling less expense • Not having to make excuses for repeated absences • Enables families to maintain some degree of “normal” life

  15. Common issues for families • Language difficulties • Separation from family, friends, & existing support systems back home • Difficulties understanding health & welfare systems

  16. Common issues for families • Different beliefs about health & treatment; strong religious overtones • Anxieties about level of knowledge. Unshakeable view of imminent death • Traditional family structure. Male not able to work

  17. Common issues for families • Children brought up in different culture and having to adapt • Difficulties coping when health may not be so good: extra responsibilities for kids • Long-term future & planning impossible

  18. Common issues for families • Anxieties: • Immigration status • Fear of deportment/displacement • Housing • Fear of authority/neighbourhood • Health • Isolation, no-one to turn to • Confidentiality

  19. Children and families in the UK • Where we are up to • What is a family clinic? • Why have one? • What is the ideal family clinic? • What is the reality? • Current and future needs

  20. Ideal Family Clinic • Regular meeting involving the multi-disciplinary team • Weekly clinics with adult physician and paediatrician • Shared clinics (in the same room) ideal but difficult. Usually working in adjoining rooms • All bloods done beforehand • Child space in clinic

  21. Co-ordinator Nurse specialist Research Nurse Paediatricians Junior doctors Midwife Adult Physician Nursery nurse (Pharmacy) Plus input from: Psychology Dietetics Occupational therapy Physiotherapy Social services Ideal family clinic

  22. Children and families in the UK • Where we are up to • What is a family clinic? • Why have one? • What is the ideal family clinic? • What is the reality? • Current and future needs

  23. Reality: not always the way .... • Resources • Expertise • Logistics

  24. What do we have in Manchester? • 40 children • Mainly African background • Significant number of early teenagers • Weekly clinic: always one paediatrician and one adult physician • See families together but focus more on children's health needs • Also do bloods from babies post-delivery being screened by PCR

  25. What do we have in Manchester? • Team: • 2 paediatricians • 2 adult docs • 1 adult community nurse • 1 midwife • Bit of a pharmacist, adherence nurse • No co-ordinator, no specialist paediatric nurse and nothing else!

  26. What do we NOT have in Manchester? • Absolutely essential to have someone who coordinates the clinic and a specialist paediatric nurse. • Where there are around 40 children these roles would be filled by the same person • Where there are >50 kids:

  27. The way forward … • Recognised and funded as a specialist service • Clinical service networks – managed via larger centres • Increased shared care • More specialised practitioners • Better and more streamlined protocols and policies adaptable to satellite units • Development of IT and materials to facilitate knowledge exchange • Better data collection and referral pathways

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