Transcript Improving the recognition of the neglect of medical needs

IMPROVING THE
RECOGNITION OF THE
NEGLECT OF MEDICAL
NEEDS AS A SAFEGUARDING
ISSUE
Drs Michelle Zalkin, Tammy Rothenberg, Piyusha Kapila
Great Ormond Street Hospital at the North Middlesex Hospital
“Safeguarding Children”
The process of
protecting children
from abuse or neglect
preventing impairment of
their health and
development
DOH 2006 Working together to safeguard children
Case 1:
The unexpected diagnosis
...neglect of medical needs as a
safeguarding issue
Case 1:

“The
unexpected
diagnosis”




Background
Knee problem under orthopaedic surgeons
Pre-operation: low Calcium-admitted as an
emergency
ECG: life-threatening cardiac rhythm
abnormality
Treatment: Calcium and Vitamin D
Follow up:
Case 1:
“The
unexpected
diagnosis”

17.6.08:
 Did
not attend
Follow up:
Case 1:
“The
unexpected
diagnosis”

17.6.08:
 Did

not attend
15.7.08:
 Did
not attend
Follow up:
Case 1:
“The
unexpected
diagnosis”

17.6.08:
 Did

15.7.08:
 Did

not attend
not attend
19.08.08:
 Did
not attend
Orthopaedic follow up:
Case 1:
“The
unexpected
diagnosis”

2.6.08:
 Did
not attend
Orthopaedic follow up:
Case 1:
“The
unexpected
diagnosis”

2.6.08:
 Did

not attend
30.6.08:
 Patient
changed appointment
Orthopaedic follow up:
Case 1:
“The
unexpected
diagnosis”

2.6.08:
 Did

not attend
30.6.08:
 Patient

changed appointment
11.08.08
 Did
not attend
 “Discharged”
Intervention
Case 1:
“The
unexpected
diagnosis”
Consultant writes to mother :
 “I am extremely concerned that D has
missed 3 appointments to miss my
clinic...when his calcium levels were so low
that his heart was being affected...
I have no choice but to refer D to social care
as he is at risk of significant harm”

Intervention
Case 1:

“The
unexpected
diagnosis”

Referral to social care:
“ this child has low calcium levels secondary
to vitamin D deficiency and this has affected
his heart...
...I’m extremely worried that he’s been
placed at risk of significant harm. If his
calcium and Vitamin D levels are not
monitored he could die.”
Outcome of referral to social care
Case 1:

“The
unexpected
diagnosis”


We have no record of response from social
care
Phone call from mother: D has been either
at work experience or doing exams.
October 2008 seen in clinic:
Heart better
 Vitamin D level still low
 Needs ongoing medication
 Advised that whole family needs testing

Current position:
Case 1:
“The
unexpected
diagnosis”
 18
month old sibling diagnosed with Vitamin
D deficiency (rickets) opportunistically
 Family
persistently runs out of medications
 Other
family members still not tested
Case 2:
“ Six children needing six months of medication”
6 children needing 6 months of
medication
Mar
• HH
diagnosed
with
Tuberculosis
(TB)
April
May
May
June
June
6 children needing 6 months of
medication
Mar
April
• HH
• Mother
diagnosed fails to
with TB
bring
siblings
for
contact
tracing
May
May
June
June
6 children needing 6 months of
medication
Mar
April
• HH
• Mother
diagnosed fails to
with TB
bring
siblings
for
contact
tracing
May
• Directly
observed
therapy
begins for
HH at
home
May
June
June
6 children needing 6 months of
medication
Mar
April
• HH
• Mother
diagnosed fails to
with TB
bring
siblings
for
contact
tracing
May
May
• Directly • Sister
observed
diagnosed
therapy
with
begins for spinal TB
HH at
home
June
June
6 children needing 6 months of
medication
Mar
April
• HH
• Mother
diagnosed fails to
with TB
bring
siblings
for
contact
tracing
May
May
• Directly • Sister
observed
diagnosed
therapy
with
begins for spinal TB
HH at
• Imminent
home
spinal
cord
collapse
June
June
6 children needing 6 months of
medication
Mar
April
• HH
• Mother
diagnosed fails to
with TB
bring
siblings
for
contact
tracing
May
May
June
• Directly • Sister
• Contact
observed
diagnosed tracing
therapy
with
begins
begins for spinal TB
HH at
• Imminent
home
spinal
cord
collapse
June
6 children needing 6 months of
medication
Mar
April
• HH
• Mother
diagnosed fails to
with TB
bring
siblings
for
contact
tracing
May
May
June
• Directly • Sister
• Contact
observed
diagnosed tracing
therapy
with
begins
begins for spinal TB
HH at
• Imminent
home
spinal
cord
collapse
June
• All 6
children
need 6
months of
treatment
6 children needing 6 months of
medication
Case 2

June
 Directly
observed therapy for all 6 children
(aged 1-16)
 Specialist nurses at home Monday to Friday
 Time taken: one and half hours per day
Input:
Directly
observed
therapy

Referral to Children’s Community Nursing
Team
 Concern
raised about mother’s ability to
provide medical care for the children
Referral to social care
Case 2:
“six children
needing six
months of
medication”

“Mother is struggling giving the medication
and attending appointments with the
children and this is causing delays to
diagnosis and in treatment. We are
concerned she is not coping and the health
of the children is suffering as a consequence”
Response from social care
department:
Case 2:
“six children
needing six
months of
medication”
Response from social care department
 “it does not appear that there would be a
role for our department as we are not
medically trained to assist parents in such
situations”
Intervention
Case 2:

“six children
needing six
months of
medication”


July
Reviewed in hospital child protection
meeting:
Designated Child Protection Nurse
contacted social care department to review
decision
Intervention
Case 2:

“six children
needing six
months of
medication”



Social worker contacted TB nurse specialist
Immediate problem of weekend therapy
now resolved
Ongoing need for support needed for
mother as lone parent in coping with 6
children
July: Social care case closed
Case 3
“ the chronic condition”
neglect of medical needs as a
safeguarding issue
“the chronic
condition”


9 year old boy diagnosed in 2005 with
insulin dependent diabetes mellitus
HbA1c satisfactory initially
 HbA1c
is the internationally used measure of
diabetes control
 There are long term consequences of poorly
controlled diabetes: Heart attack, blindness,
kidney failure
 The higher the HbA1c the greater the risk
...neglect of medical needs as a
safeguarding issue
HbA1c
Case 3:
HbA1c
“the chronic
condition”
16.6
14
8.9
12.8
13.1
10.5
8.8
Jan-06
Mar-06
May-06
Jul-06
Sep-06
Nov-06
Jan-07
Mar-07
May-07
Jul-07
Sep-07
Nov-07
Jan-08
Mar-08
May-08
Jul-08
Sep-08
Nov-08
Jan-09
6.1
neglect of medical needs as a
safeguarding issue
“the chronic
condition”




Mother emailed Diabetes nurse specialist
requesting help
HbA1c: 14.0
Referred to CAMHS
Increased support from Diabetes
Nurse specialist team
...neglect of medical needs as a
safeguarding issue
Case 3:
“the chronic
condition”
neglect of medical needs as a
safeguarding issue
“the chronic
condition”


:
Admitted as medical emergency: HbA1c 16
Urgent professionals meeting called
Outcome of professionals meeting
“the chronic
condition”



:
Health action plan drawn up
School plan drawn up
Feedback to social care
neglect of medical needs as a
safeguarding issue
“the chronic
condition”


:
Social worker meets JB and mother in
hospital
No clear plan made to meet JB’s medical
needs
neglect of medical needs as a
safeguarding issue
“the chronic
condition”

:
Written agreement drawn up
 Voluntary
agreement between mother and
father and social care worker
 Contract of care specifying JB’s needs
neglect of medical needs as a
safeguarding issue
“the chronic
condition”



:
Social worker writes to diabetes nurse
specialist:
“[We will] close the case as there is no
further role for social services”
Offers to review case if re-referred or if the
agreement is not adhered to
...neglect of medical needs as a
safeguarding issue
Case 3:
“the chronic
condition”
neglect of medical needs as a
safeguarding issue
“the chronic
condition”
:
 Diabetes Nurse receives SMS from JB
requesting admission:
“I think for my own health and safety I
should come into hospital”
 JB admitted to hospital
 JB had been home with father while mother
abroad. No adult supervision of sugar
testing or administration of insulin
neglect of medical needs as a
safeguarding issue
:
“the chronic
condition”

JB goes into foster care under a voluntary
agreement between mother and social
services (section 20):
Consequences of medical neglect
How big is the problem?
What is the consequence of medical
neglect ?



CMACE: “Why children die” 2008
Qualitative Analysis of 126 child deaths
“When reviewing the records of children
who had died, panels repeatedly
encountered instances where children who
had failed to attend out-patient
appointments on one or more occasions
were not followed up, with deleterious
consequences.”
How can medical needs be
neglected?
Not seeking
medical attention
Non- attendance
with professionals
Treatment refusal
Non-adherence
How can medical needs be
neglected?
Not seeking medical
attention
Non- attendance with
professionals
Treatment refusal
Non-adherence
Non-recognition of
neglect
Non-adherence, non-attendance and
risk of harm
Actual harm
or Risk harm
Attendance
Adherence
Medical
condition
What is the size of the problem


Measurement of neglect very difficult
USA 1986 National Incidence study of Child
Abuse and Neglect, repeated 1996:
 Physical
neglect
 Refusal of health care
 Delay in health care
 Refusal of psychological care
 Delay in psychological care
What is the size of the problem
US National
Incidence of
child neglect
1988
Physical neglect
• 8.1 per 1000 children
Refusal of health
care
• 1.1 per 1000 children
Delay in health
care
• 0.6 per 1000 children
Refusal of
psychological care
• 0.4 per 1000 children
Delay in
psychological care
• 0.4 per 1000 children
How do we identify neglect of
medical needs?
Defining medical neglect
A child is harmed or is at risk of harm because of lack of health care
The recommended health care offers significant net benefit to the child
The anticipated benefit of the treatment is significantly greater than its morbidity, so
that reasonable caregivers would choose treatment over non-treatment
It can be demonstrated that access to health care is available and not used
The care giver understands the medical advice given
• Dubowitz H 2002
What do major documents say about
neglect of medical needs?
Working together to
Safeguard children,
DOH 2006
Pan London
Safeguarding
Children Boards’
(LSCBs) Inter-Agency
Safeguarding Children
Procedures 3rd Edition
2007
NICE guideline
“When to suspect
child maltreatment”
2009
RCPCH Child
protection
companion 2006
What do major documents say?
Working together to
Safeguard children,
DOH 2006
• Neglect is the
persistent failure to
meet a child’s basic
physical and/or
psychological needs,
likely to result in the
serious impairment
of the child’s health
or development.
Neglect of medical
needs
• Nothing specific
stated
What do major documents say?
Pan-London LSCB InterAgency Safeguarding Children
Procedures 3rd Edition 2007
Neglect of medical needs
• No further specifics
• Allegations of periodic
neglect including failure
to seek / attend
treatment or
appointments is grounds
for an initial assessment
What do major documents say?
RCPCH Child
protection companion
2006
• Where a health
professional has
concerns that abuse
or neglect is
suspected in a child,
they have a
responsibility to refer
to Children’s Social
Care.
Neglect of medical
needs
• Nothing specific
What do major documents say?
NICE guideline
2009
• Alerting features that
should prompt you to
consider neglect...
• ...parents or carers
who do not
administer essential
prescribed treatment
• . ..parents who
repeatedly fail to
attend essential
follow-up
appointments that are
necessary for the
wellbeing of their
child
What do major documents say?
NICE guideline
2009
• ...in some
instances the
process of
‘consider’ would
appropriately take
the healthcare
professional to
‘suspect’
maltreatment
• Examples include
medication for
diabetes, or anticonvulsants for
epilepsy.”
What should we do about it?- Health
care practitioners
Facilitate
translation
Understand
families’ concerns
Counsel family and
education parents
and patient
Develop a written
contract
Involve family in
development of
medical plan
Expand the circle
of care-givers
Enlist community
resources
Arrange directly
observed therapy
Hospital admission
Inter-agency multi-disciplinary working
Adapted from: Recognizing and responding to Medical Neglect, Jenny C and the Committee on Child Abuse and Neglect 2007
What should we do about medical
neglect- Inter-agency working
Local
experience


Offered training to local safeguarding
children board
Attempt to set up working group working
with local borough
 Passed
on to disability team
 Difficult to find someone to take this on
What should we do about neglect of
medical needs: National level
Recommendati
on for action on
national level

Inter-agency working:
 National
working group acting to define and
indentify children whose medical needs are
neglected
 A National Policy should be derived, drawing
up guidelines on recognising and acting on
unmet medical needs
“Safeguarding Children”
The process of
protecting children
from abuse or neglect
preventing impairment of
their health and
development
DOH 2006 Working together to safeguard children
Thank you
Dr Michelle Zalkin
Dr Tammy Rothenberg
Dr Piyusha Kapila
North Middlesex Hospital September 2009