2. Planning care for the long-stay patient Louis Reynolds Zanda Jaquire Carla Brown Jane Booth Paediatrics & Child Health, Child Psychiatry, UCT Nursing & Social Work, Red Cross War Memorial Children's Hospita.

3. AJ, age 12 years ‘Found’ in ward: –“Renal failure & hypertension” –Transferred from ICU Clinically: –Extreme apathy; appears traumatised –Very weak & wasted –Poor respiratory efforts –Hypertensive –Mother tired and dazed

4. AJ, age 12 years Pre-ICU history: 1 month –abdominal pain –Seizures –TB contact, on treatment –"Malnutrition" –"LMN signs (acquired)", –renal failure –hypertensive encephalopathy No clear diagnosis or plan

5. AJ, age 12 years Assessment: –Paralytic disease, ?G-B syndrome –Respiratory pump failure –? Autonomic instability  Back to ICU for ventilation protracted course anticipated

6. Some long stay issues The medical problem –Diagnosis, prognosis, management –Complications –Iatrogenesis The environment: –child-friendly or hostile –predictable or unpredictable Growing psychosocial issues –Vulnerability –Powerlessness –Loss of identity –Disconnection from family and social networks

7. Some essential principles Keep children out of hospital Give the ‘best possible’ care Secure, clean, ‘child-friendly’ environment Communication & sharing information Respect the child as a person today, with human rights –Provision –Protection –Participation –The ‘best interests’ principle

8. physio psychiatryOT nursingaroma Social work volunteermedical child mother

9. physio psychiatryOT nursingaroma Social work volunteermedical

10. Some essential principles Lay the medical foundation –Diagnosis, prognosis, management –If diagnosis unclear, keep minds open, focus on problems –Continuity of care Demedicalise the child’s life –Daily routine –Activities; timing critical –Never make false promises –Demystify technology, etc etc –Protect, promote & advance her [& family’s] right to participate

11. The multidisciplinary team

12. Paternalism,autonomy & control autonomy paternalism child & family doctor The critical balance

17. The final lesson I'm going to share is this. The very painful thing … is the feeling that the situation is out of your control. When the system that surrounds you is top-down, bureaucratic, inhuman -- that can only increase your feelings of helplessness. So a really big difference we can make is to put more power and control right into the hands of parents, carers or those with disabilities David Cameron, The Independent, 16 July 2009

18. The golden rules Lay a sound medical foundation, then demedicalise her life Keep her at the centre Keep her in the family Keep her & her family in control Avoid paternalism

20. Some long stay issues The medical problem –Diagnosis, prognosis, management –Complications –Iatrogenesis The environment: –child-friendly or hostile –predictable or unpredictable Growing psychosocial issues –Vulnerability –Powerlessnes –Loss of identity –Disconnection from family and social networks

27. Some long stay issues The medical problem –Diagnosis, prognosis, management –Complications –Iatrogenesis The environment: –child-friendly or hostile –predictable or unpredictable Growing psychosocial issues –Vulnerability –Powerlessnes –Loss of identity –Disconnection from family and social networks

28. medical psychiatry OT nursing aroma Social work volunteer

30. medical psychiatry OT nursing aroma Social work volunteer