Sheila Oliver's Campaigning Website

KINGS.PALS (KING'S COLLEGE HOSPITAL NHS FOUNDATION TRUST) <kch-tr.kings.pals@nhs.net>

Mon 21/07/2025 10:53

Child B

I am writing to request immediate cardiology review and clinical escalation regarding my daughter, and to confirm she is currently an inpatient on XXXX Ward.

Last night, Child B's heart rate dropped to 35 bpm and her respiratory rate to 10 breaths per minute, as recorded on continuous Holter and bedside monitoring. The monitors were alarming persistently, yet there appears to have been no cardiologist response or escalation to these abnormal and potentially dangerous findings.

This situation is particularly serious given:

- A prior cardiology discharge without autonomic testing and apparent incidental findings of pulmonary and other valve  regurgitation
- Cold, clammy extremities and symptoms of dysautonomia noted on multiple occasions
- Confirmed diagnoses of Ehlers-Danlos Syndrome, neurodevelopmental conditions, and GI issues well documented
- A family history of autonomic instability and immune dysregulation

These overnight findings should have triggered urgent medical review under paediatric early warning protocols. Persistent bradycardia in an unwell and seriously underweight child are not normal, particularly in a child with complex underlying conditions and with no written evidence of the test results from Colchester for the following to add some of these tests are fasting and 9am but were done by Colchester at 1pm !

-
Magnesium
I Iron studies
Ferritin
Full blood count
Serum folate
Renal profile (Includes Urea)
Bone profile (Includes Phosphate
Vitamin B12
Free homocysteine / methionine
Cortisol
Anti-nuclear ABS
Amylase
Liver function tests
Vitamin B1 (Thiamin)
Thyroid Function Test
Selenium
Zinc
Erythrocyte sedimentation rate
C-Reactive protein
Tissue transglutaminase IgA antibody
Total vitamin D

There is a significant history in family of cortisol being under the nice guidelines threshold for the family and general inaction by Colchester S 14 previous cortisol 9am 156 , my self 218 and referred to endocrinologist by gp , Child A 9am 216 told normal however had the synastin done by Colchester and told normal - persistent low cortisol may be a symptom of Addisons.  Child B was checked over 3 years ago 403 but the families is documented as going up and down and could be affected by autonomic issues.

I am requesting:
- Urgent cardiology review while she remains an inpatient
- Full review of her Holter and overnight monitoring data
- echocardiogram, and consideration of autonomic testing
- Formal documentation of why no escalation occurred when the alarms were sounding

If the hospital is unwilling or unable to arrange the appropriate review, I will seek private cardiology input independently. However, if any significant cardiac or autonomic abnormalities are subsequently confirmed, then any discharge or failure to follow up and act on these findings during inpatient monitoring — may constitute negligence and an unlawful or unsafe discharge.

Please confirm urgently what action is now being taken to review these serious clinical signs. I am happy to speak directly with the consultant responsible if this would help.