1. Medical Neglect What does this case teach us?

2. Medical Neglect Encompasses a parent or guardian’s delay or denial in seeking health care for a child Includes Failure to provide or allow needed care as determined by appropriate health care professional Failure to seek timely and appropriate medical care for a serious health condition any reasonable person would have recognised as requiring treatment Can include not seeking preventative treatment also e.g. preventative dental care and immunisations

3. Background 11 year old boy Diagnosed with Ulcerative Colitis 2yo UC managed with medication Unwell with recurrent flare-ups from 2-4yo, associated with steroid weaning Relatively well from 4-10yo (6 years). No flare-ups. Normal colonoscopies. Poor growth (height & weight) from age 2 years Long standing poor diet – lots of fried foods, poor nutritional value, didn’t attend dietician appointments Well known to gastroenterology team (RCH), seen same specialist since diagnosis

4. Background Overall outpatient appointment attendance was OK Missed 2 consecutive appointments btw March & August 2010 Missed 3 consecutive appointments btw April 2011 & January 2012 Missed 2 consecutive appointments btw May & October 2012 Missed 2 consecutive appointments btw October 2012 & May 2013 During most recent prolonged flare-up (started July 2014) mother cancelled 2 appointments – October 2014 and January 2015. Only attended GP for referrals History of anxiety especially around medical procedures – therefore deferred iron infusion because of anxiety associated with IV insertion

5. Background For the 6 months prior to admission recurrent UC flare-ups requiring steroid treatment and hospital admissions in Sept & Oct 2014 Poor school attendance, at time of assessment hadn’t been since Term 3, 2014 Brother, who has no medical problems wasn’t attending either Lives at home with mother, younger brother and step-father Mother has history of anxiety and depression, chronic pain, abusive partner, drug use, Child Protection involvement when she was child Mother not able to identify his diagnosis (UC, Crohn’s or irritable bowel) Mother stated no education about condition Mother unable to recall hospital admissions for flare-ups in 2014 (September & October)

6. Hospital Admission Admitted 16 th February 2015 after outpatient attendance Last attended outpatients on 5 th December 2014 Cancelled Outpatient appointment on 30 th January 2015 because sick, was advised still to come by treating doctor Unwell for the 3 weeks prior to admission – “flu”, “impetigo”, “mouth ulcers” Mouth ulcers for 2 weeks and unable to eat over this time Unable to get out of bed for 2 weeks except to go to toilet Symptoms over the 3 weeks included diarrhoea, vomiting, mouth ulcers, leg ulcers, weight loss Did not attend GP Applied cream to legs left over from brothers impetigo the previous year

7. Hospital Admission Taken to Resuscitation Bay from Outpatients. Febrile, tachycardia (  HR),  BP, emaciated, pale, cap refill >2sec (  ed), leg ulcers. Admitted to ICU for 5 days – for stabilisation of fluid status & electrolyte abnormalities Death possible as result of electrolyte abnormalities Potassium Sodium Anaemia Calcium Treated for flare of his UC – antibiotics, steroids, pantoprazole Required blood transfusion x2 Fluid + Potassium replacement NGT feeds started, initially nil orally.

8. Hospital Admission Vitamin blood tests – many deficiencies (Vit A, Vit D, Vit C, Zinc) Vitamin supplements – Vit K, Vit A, Vit D, Thiamine, Folic Acid, Zinc, Phosphate, Iron infusion Very low bone density Seen by inpatient psychiatric team VFPMS contacted by SW 10 days after admission Discharged home on NGT feeds plus normal diet, vitamin supplements, steroids, immune modulating agents Child Protection involvement, discharged into mother’s care

9. Case Specific Alerts Many of the below factors on their own may not raise concern but when present together neglect needs to be considered Not seeking appropriate medical care Mother’s history of drug use and mental health issues Missed outpatient appointments – especially increased frequency Not following through with referrals eg to dietician Poor diet in child who had poor weight gain Chronic illness in child + anxiety to medical procedures Low soci0-economic background/financial hardship Mother’s apparent poor understanding of child’s illness Poor school attendance/school not aware of medical condition Not seeking mental health care

10. Other Types of Neglect Physical\Environmental Nutritional – poor growth, poor diet Emotional Maternal drug use Lack of school friends Educational Lack of school attendance

11. Factors Limiting Recognition/Response Long standing relationship with patient & parent – “adequate parenting” Not wanting to disrupt patient-doctor relationship, will they stop coming all together Not always aware social situation eg financial stressors, non school attendance Not wanting to seem to judge family Time poor – therefore focus on essential components of appointment eg symptoms of UC/medications Lack of awareness of VFPMS role for inpatients?

12. WHERE TO FROM HERE?