Neglect and Medical Neglect and Medical DiseaseDisease

Dr Zilla HumaDr Zilla Huma

Consultant PaediatricianConsultant Paediatrician

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

Health care workers Health care workers see children in see children in hospitals or surgeries, hospitals or surgeries, not usually in their not usually in their homeshomes

We see parents with We see parents with their children whom their children whom they have brought to they have brought to our attentionour attention

Neglect is the failure of a parent, Neglect is the failure of a parent, guardian, or other caregiver to guardian, or other caregiver to provide for a child’s basic needs. provide for a child’s basic needs. Neglect may be:Neglect may be:

PhysicalPhysical e.g., failure to provide necessary food or e.g., failure to provide necessary food or shelter, or lack of appropriate supervision shelter, or lack of appropriate supervision

MedicalMedical e.g., failure to provide necessary medical or e.g., failure to provide necessary medical or mental health treatment mental health treatment

EducationalEducational e.g., failure to educate a child or attend e.g., failure to educate a child or attend to special education needsto special education needs

EmotionalEmotional e.g., inattention to a child’s emotional e.g., inattention to a child’s emotional needs, failure to provide psychological care, or needs, failure to provide psychological care, or permitting the child to use alcohol or other drugspermitting the child to use alcohol or other drugs

The most obvious form of The most obvious form of neglect, medically, neglect, medically, psychosocial dwarfismpsychosocial dwarfism

Pt B.NPt B.N

Fourth child of physically well Fourth child of physically well parentsparents

Routine baby screen revealed Routine baby screen revealed Phenylketonuria by 3 weeks of agePhenylketonuria by 3 weeks of age

Commenced on appropriate dietCommenced on appropriate diet (without treatment brain damage, (without treatment brain damage,

epilepsy, severe developmental epilepsy, severe developmental delay)delay)

BN 2BN 2 Age 0- 2, poor compliance with bloods, Age 0- 2, poor compliance with bloods,

difficulties understanding the dietdifficulties understanding the diet Age 3 , parents separate, lost to follow up, Age 3 , parents separate, lost to follow up,

living with motherliving with mother Age 3.5, social services contacted, Age 3.5, social services contacted, case case

conferenceconference, mother to comply with , mother to comply with fornightly blood tests and dietfornightly blood tests and diet

Age 4, doing well, only does badly after trips Age 4, doing well, only does badly after trips to father?to father?

Age 5, alcohol issues with motherAge 5, alcohol issues with mother Age 6, living with father, poor compliance, Age 6, living with father, poor compliance,

social services, only does badly after visits to social services, only does badly after visits to mother?mother?

Age 7, living with father, excellent control…..Age 7, living with father, excellent control…..

Ongoing DilemmaOngoing Dilemma

Shared custody so if he does badly Shared custody so if he does badly with blood tests, which parent is to with blood tests, which parent is to blameblame

Both parents ‘intellectually challenged’ Both parents ‘intellectually challenged’ so how do we judge our expectations so how do we judge our expectations of the child?of the child?

Would we ever be prepared to remove Would we ever be prepared to remove him from parental care ? And from his him from parental care ? And from his siblings?siblings?

Is this neglect?Is this neglect?

Patient MFPatient MF

Seventh child of well parentsSeventh child of well parents Age 2 diagnosed with insulin deficient Age 2 diagnosed with insulin deficient

diabetes mellitus, difficulties diabetes mellitus, difficulties explaining diagnosis and treatment to explaining diagnosis and treatment to mother, smart older sisters helpmother, smart older sisters help

Age 2.5, poor control but happy, never Age 2.5, poor control but happy, never in hospitalin hospital

Age 4, school reports poor control, Age 4, school reports poor control, mother unable to help them, discover mother unable to help them, discover she has delegated all injections to she has delegated all injections to daughtersdaughters

What to Do?What to Do?

Increased involvement of Increased involvement of paediatric community nursing paediatric community nursing teamteam

Frank discussion with mother, Frank discussion with mother, then both parents, about then both parents, about inappropriate delegation of careinappropriate delegation of care

Increase support to school from Increase support to school from his diabetic team his diabetic team

ResultResult

No change in mothers bahaviour No change in mothers bahaviour except to give some insulinexcept to give some insulin

SS contactedSS contacted Parents furious but agree to Parents furious but agree to

improve complianceimprove compliance Mother pregnant with 9Mother pregnant with 9thth child, child,

needs her daughters to help….needs her daughters to help…. What next? Is this neglect?What next? Is this neglect?

What should our role be?What should our role be?

A loved child who is very happy in his A loved child who is very happy in his own home vs inevitable shortening of own home vs inevitable shortening of life expectancy with blindness and life expectancy with blindness and kidney failure by age 30kidney failure by age 30

Support the family and accept their Support the family and accept their refusal to complyrefusal to comply

Force compliance legally?Force compliance legally? The issues will be ongoing through The issues will be ongoing through

childhoodchildhood

JDJD

12 year old boy presents with 12 year old boy presents with acute bloody diarrhoea: acute bloody diarrhoea: Ulcerative ColitisUlcerative Colitis

After a week in hospital home on After a week in hospital home on treatment, reviewed after 2 and 4 treatment, reviewed after 2 and 4 weeks, still at homeweeks, still at home

Review at 3 months, still at homeReview at 3 months, still at home

What about School ?What about School ?

Child appears quite delayedChild appears quite delayed Assessed by hospital teachers, Assessed by hospital teachers,

after much delay, educational after much delay, educational level age 7level age 7

Discussion with his school: Discussion with his school: attendance <50% PRIOR to attendance <50% PRIOR to diagnosis for 2 yearsdiagnosis for 2 years

Why?Why?

Picking out the truth….Picking out the truth….

Mother feels he is often too unwell to Mother feels he is often too unwell to go to schoolgo to school

Father at work during the dayFather at work during the day The child sits in front of the TV all dayThe 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 Hospital schooling arranged with

transportation, takes a year to sort transportation, takes a year to sort thisthis

ResultResult

Fails to attend, diarrhoea whenever Fails to attend, diarrhoea whenever taxi arrives ? Phobia in mother/ childtaxi arrives ? Phobia in mother/ child

Case conferenceCase conference We insist upon daily arrival in We insist upon daily arrival in

hospital, either attend school or see hospital, either attend school or see a doctor!a doctor!

Non compliantNon compliant Admitted for several weeks, Admitted for several weeks,

amazing improvement in abilityamazing improvement in ability

Continuing CareContinuing Care

Now 15 years old, wants to stay with his Now 15 years old, wants to stay with his parentsparents

After every case conference 2-3 months of After every case conference 2-3 months of good compliance then not, playing the good compliance then not, playing the systemsystem

Socially isolatedSocially isolated Not trained/educated for independenceNot trained/educated for independence Is this neglect?Is this neglect? TOO LITTLE, TOO LATETOO LITTLE, TOO LATE

Permanent effects of Permanent effects of NeglectNeglect

SBSB

13 year old girl eldest of 3, 13 year old girl eldest of 3, parents separatedparents separated

Develops chronic fatigue Develops chronic fatigue syndrome after father leavessyndrome after father leaves

CAMHS involvement, social CAMHS involvement, social services minimally involvedservices minimally involved

After 6 months of isolated care at After 6 months of isolated care at home by mother develops home by mother develops ‘dissociative disorder’‘dissociative disorder’

The Downhill CourseThe Downhill Course Stops talking, eating, moving, Stops talking, eating, moving,

toiletingtoileting Communicates with mother through Communicates with mother through

‘huffing’‘huffing’ No physical abnormalitiesNo physical abnormalities Admitted for months, mother Admitted for months, mother

ALWAYS presentALWAYS present Who has the psychological problem?Who has the psychological problem? If we comply with mother are we If we comply with mother are we

colluding?colluding?

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

JSJS

14 year old boy with abdominal 14 year old boy with abdominal pain, eldest of 3, brother autistic, pain, eldest of 3, brother autistic, single mothersingle mother

No school attendance for 2 yearsNo school attendance for 2 years Mother fully engaged with all Mother fully engaged with all

services services Eventually come to a diagnosis of Eventually come to a diagnosis of

recurrent pancreatitis, mildrecurrent pancreatitis, mild

Care planCare plan

Case conferenceCase conference He will attend school or be home He will attend school or be home

schooled:failedschooled:failed He will not be admitted to hospital: He will not be admitted to hospital:

failedfailed He will meet other children: failedHe will meet other children: failed His mother will give him time His mother will give him time

apart: failedapart: failed

What next?What next?

He has a real disease, we cannot He has a real disease, we cannot deny that he has paindeny that he has pain

Therefore, as his advocate, his Therefore, as his advocate, his mother is only acting on his mother is only acting on his behalfbehalf

Is he being neglected?Is he being neglected?

How far do we go with our How far do we go with our definition of ‘neglect’ in medical definition of ‘neglect’ in medical disease?disease?

If a parent doesn’t follow a If a parent doesn’t follow a medical plan is that neglect or medical plan is that neglect or freedom of choice?freedom of choice?

When do we say ‘enough’?When do we say ‘enough’? How do empower the child to How do empower the child to

make a decision?make a decision?

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