1. Neglect and Medical Disease Dr Zilla Huma Consultant Paediatrician

2. Child abuse is the physical, sexual, emotional mistreatment, or neglect of children. Define child maltreatment as any act or series of acts of commission or omission by a parent or other caregiver that results in harm, potential for harm, or threat of harm to a child.

3. Health care workers see children in hospitals or surgeries, not usually in their homes We see parents with their children whom they have brought to our attention

4. Neglect is the failure of a parent, guardian, or other caregiver to provide for a child’s basic needs. Neglect may be: Physical e.g., failure to provide necessary food or shelter, or lack of appropriate supervision Physical e.g., failure to provide necessary food or shelter, or lack of appropriate supervision Medical e.g., failure to provide necessary medical or mental health treatment Medical e.g., failure to provide necessary medical or mental health treatment Educational e.g., failure to educate a child or attend to special education needs Educational e.g., failure to educate a child or attend to special education needs Emotional e.g., inattention to a child’s emotional needs, failure to provide psychological care, or permitting the child to use alcohol or other drugs

5. The most obvious form of neglect, medically, psychosocial dwarfism

8. Pt B.N Fourth child of physically well parents Fourth child of physically well parents Routine baby screen revealed Phenylketonuria by 3 weeks of age Routine baby screen revealed Phenylketonuria by 3 weeks of age Commenced on appropriate diet Commenced on appropriate diet (without treatment brain damage, epilepsy, severe developmental delay) (without treatment brain damage, epilepsy, severe developmental delay)

9. BN 2 Age 0- 2, poor compliance with bloods, difficulties understanding the diet Age 0- 2, poor compliance with bloods, difficulties understanding the diet Age 3, parents separate, lost to follow up, living with mother Age 3, parents separate, lost to follow up, living with mother Age 3.5, social services contacted, case conference, mother to comply with fornightly blood tests and diet Age 3.5, social services contacted, case conference, mother to comply with fornightly blood tests and diet Age 4, doing well, only does badly after trips to father? Age 4, doing well, only does badly after trips to father? Age 5, alcohol issues with mother Age 5, alcohol issues with mother Age 6, living with father, poor compliance, social services, only does badly after visits to mother? Age 6, living with father, poor compliance, social services, only does badly after visits to mother? Age 7, living with father, excellent control….. Age 7, living with father, excellent control…..

10. Ongoing Dilemma Shared custody so if he does badly with blood tests, which parent is to blame Shared custody so if he does badly with blood tests, which parent is to blame Both parents ‘intellectually challenged’ so how do we judge our expectations of the child? Both parents ‘intellectually challenged’ so how do we judge our expectations of the child? Would we ever be prepared to remove him from parental care ? And from his siblings? Would we ever be prepared to remove him from parental care ? And from his siblings? Is this neglect? Is this neglect?

11. Patient MF Seventh child of well parents Seventh child of well parents Age 2 diagnosed with insulin deficient diabetes mellitus, difficulties explaining diagnosis and treatment to mother, smart older sisters help Age 2 diagnosed with insulin deficient diabetes mellitus, difficulties explaining diagnosis and treatment to mother, smart older sisters help Age 2.5, poor control but happy, never in hospital Age 2.5, poor control but happy, never in hospital Age 4, school reports poor control, mother unable to help them, discover she has delegated all injections to daughters Age 4, school reports poor control, mother unable to help them, discover she has delegated all injections to daughters

12. What to Do? Increased involvement of paediatric community nursing team Increased involvement of paediatric community nursing team Frank discussion with mother, then both parents, about inappropriate delegation of care Frank discussion with mother, then both parents, about inappropriate delegation of care Increase support to school from his diabetic team Increase support to school from his diabetic team

13. Result No change in mothers bahaviour except to give some insulin No change in mothers bahaviour except to give some insulin SS contacted SS contacted Parents furious but agree to improve compliance Parents furious but agree to improve compliance Mother pregnant with 9 th child, needs her daughters to help…. Mother pregnant with 9 th child, needs her daughters to help…. What next? Is this neglect? What next? Is this neglect?

14. What should our role be? A loved child who is very happy in his own home vs inevitable shortening of life expectancy with blindness and kidney failure by age 30 A loved child who is very happy in his own home vs inevitable shortening of life expectancy with blindness and kidney failure by age 30 Support the family and accept their refusal to comply Support the family and accept their refusal to comply Force compliance legally? Force compliance legally? The issues will be ongoing through childhood The issues will be ongoing through childhood

15. JD 12 year old boy presents with acute bloody diarrhoea: Ulcerative Colitis 12 year old boy presents with acute bloody diarrhoea: Ulcerative Colitis After a week in hospital home on treatment, reviewed after 2 and 4 weeks, still at home After a week in hospital home on treatment, reviewed after 2 and 4 weeks, still at home Review at 3 months, still at home Review at 3 months, still at home

16. What about School ? Child appears quite delayed Child appears quite delayed Assessed by hospital teachers, after much delay, educational level age 7 Assessed by hospital teachers, after much delay, educational level age 7 Discussion with his school: attendance <50% PRIOR to diagnosis for 2 years Discussion with his school: attendance <50% PRIOR to diagnosis for 2 years Why? Why?

17. Picking out the truth…. Mother feels he is often too unwell to go to school Mother feels he is often too unwell to go to school Father at work during the day Father at work during the day The child sits in front of the TV all day The child sits in front of the TV all day No friends, no interests, no sports… No friends, no interests, no sports… Hospital schooling arranged with transportation, takes a year to sort this Hospital schooling arranged with transportation, takes a year to sort this

18. Result Fails to attend, diarrhoea whenever taxi arrives ? Phobia in mother/ child Fails to attend, diarrhoea whenever taxi arrives ? Phobia in mother/ child Case conference Case conference We insist upon daily arrival in hospital, either attend school or see a doctor! We insist upon daily arrival in hospital, either attend school or see a doctor! Non compliant Non compliant Admitted for several weeks, amazing improvement in ability Admitted for several weeks, amazing improvement in ability

19. Continuing Care Now 15 years old, wants to stay with his parents Now 15 years old, wants to stay with his parents After every case conference 2-3 months of good compliance then not, playing the system After every case conference 2-3 months of good compliance then not, playing the system Socially isolated Socially isolated Not trained/educated for independence Not trained/educated for independence Is this neglect? Is this neglect? TOO LITTLE, TOO LATE TOO LITTLE, TOO LATE

20. Permanent effects of Neglect

21. SB 13 year old girl eldest of 3, parents separated 13 year old girl eldest of 3, parents separated Develops chronic fatigue syndrome after father leaves Develops chronic fatigue syndrome after father leaves CAMHS involvement, social services minimally involved CAMHS involvement, social services minimally involved After 6 months of isolated care at home by mother develops ‘dissociative disorder’ After 6 months of isolated care at home by mother develops ‘dissociative disorder’

22. The Downhill Course Stops talking, eating, moving, toileting Stops talking, eating, moving, toileting Communicates with mother through ‘huffing’ Communicates with mother through ‘huffing’ No physical abnormalities No physical abnormalities Admitted for months, mother ALWAYS present Admitted for months, mother ALWAYS present Who has the psychological problem? Who has the psychological problem? If we comply with mother are we colluding? If we comply with mother are we colluding?

23. How do you diagnose a psychiatric problem in a patient who does not communicate? How can you prove Munschausen by Proxy? Is this neglect?

24. JS 14 year old boy with abdominal pain, eldest of 3, brother autistic, single mother 14 year old boy with abdominal pain, eldest of 3, brother autistic, single mother No school attendance for 2 years No school attendance for 2 years Mother fully engaged with all services Mother fully engaged with all services Eventually come to a diagnosis of recurrent pancreatitis, mild Eventually come to a diagnosis of recurrent pancreatitis, mild

25. Care plan Case conference Case conference He will attend school or be home schooled:failed He will attend school or be home schooled:failed He will not be admitted to hospital: failed He will not be admitted to hospital: failed He will meet other children: failed He will meet other children: failed His mother will give him time apart: failed His mother will give him time apart: failed

26. What next? He has a real disease, we cannot deny that he has pain He has a real disease, we cannot deny that he has pain Therefore, as his advocate, his mother is only acting on his behalf Therefore, as his advocate, his mother is only acting on his behalf Is he being neglected? Is he being neglected?

31. How far do we go with our definition of ‘neglect’ in medical disease? If a parent doesn’t follow a medical plan is that neglect or freedom of choice? If a parent doesn’t follow a medical plan is that neglect or freedom of choice? When do we say ‘enough’? When do we say ‘enough’? How do empower the child to make a decision? How do empower the child to make a decision?

32. For example: is this abuse/neglect or a treat?