Sheila Oliver's Campaigning Website

From: Jo
Date: Sat, 26 Jul 2025 at 23:46
Subject: Safeguarding Child B and Child A further submission
To: <LADO@essex.gov.uk>


I am writing to raise further serious safeguarding and clinical governance concerns regarding the care of Child A a 10-year-old disabled child with complex neurodevelopmental and physical health needs, and her sister Child B, who now demonstrates overlapping clinical features.

These concerns centre on:
Failure to escalate or appropriately investigate a confirmed finding of autoantibodies to the IL-6 receptor alpha (IL-6RA) in Kristina, an extremely rare immunological abnormality,
Wider evidence of immune dysregulation in both children,
And an ongoing pattern of diagnostic neglect despite repeated red flags across NHS services
Child A’s findings – confirmed by immunologist Dr. Rainer Doffinger – include:
Anti–IL-6RA autoantibodies: Rare to the point of having no known paediatric prevalence; associated with immune dysregulation, impaired inflammatory signalling, and atypical infectious/autoimmune presentations.
Very high IgE (2970 and 4616 kU/L), suggesting a Hyper IgE Syndrome-like phenotype.
Abnormal T-cell cytokine stimulation (reduced IL-2, IFN-γ, IL-17), consistent with defective immune regulation.
Positive autoimmune markers: ANA and dsDNA.
Multiple nutritional deficiencies (folate, ferritin, vitamin D), low ESR and low globulin – further confirming systemic immune or metabolic dysfunction.

Despite the extreme rarity and clinical significance of these findings, Child A has been discharged or de-prioritised by King’s College Hospital and Colchester Hospital, with no long-term plan for immune monitoring, genetic screening, or specialist escalation. This represents a gross failure in safeguarding a medically vulnerable child, particularly as her condition is not well understood and has required bespoke immunology input I have had to request gp referral to gosh
Child B – Matching Clinical Pattern, No Adequate Investigation

Child B, Child A’s older sister, now shows:
Zinc deficiency, low-normal folate, and borderline vitamin D
Low ESR and globulin
Urticaria, dermographism, and Ehlers-Danlos syndrome
Unexplained GI dysfunction, slow transit, weight loss (0.4th percentile)
Bradycardia recorded at 38 bpm on hospital monitors, with no evidence of clinical escalation
Documented psychiatric reframing of symptoms, despite organic abnormalities

There is no evidence that Child B has been referred for cytokine autoantibody testing or formal immunology input, despite her clinical similarity to Child A by dr Turner Colchester or Dr Rupasinge Kings

This situation raises the following red flags:
Neglect of a rare, medically complex diagnosis (IL-6RA autoantibodies) that requires national or tertiary centre oversight
Refusal to appropriately escalate care despite multiple abnormal results, clear immunological impairment, and repeated requests from the family
Dismissal of serious clinical features in both siblings, including bradycardia, extreme fatigue, and nutritional decline, with reframing of symptoms as psychological or behavioural
Failure to enact reasonable adjustments, including home testing, consistent MDT review, and safe access to care for neurodivergent children
Lack of clinical continuity and coordination across paediatrics, immunology, and genetics
Request for LADO and Commissioning Action

Urgent LADO oversight and safeguarding escalation, with a review of:
Why no action was taken on Child A's anti–IL-6RA autoantibodies or abnormal cytokine stimulation despite known clinical risk
Whether this failure constitutes medical neglect under safeguarding definitions, particularly given Kristina’s ongoing unmet clinical needs
The current handling of Child B's emerging abnormalities and the risk of duplicated harm
The need for external review or multi-agency case mapping, with input from NHS England if appropriate
The possible need for clinical reinstatement or urgent re-referral to national immunology or genetics teams (e.g. Great Ormond Street Hospital)

These concerns are made in the best interests of both children. The medical presentation is highly unusual, and the consequences of ongoing inaction are severe. The family is currently preparing referrals to the Care Quality Commission (CQC), General Medical Council (GMC), and parliamentary advocacy groups, including disability and rare disease charities. We ask that safeguarding bodies now formally assess the risk and initiate appropriate escalation.