10th October 2025
A complaint submitted to Cambridge University Hospitals NHS Foundation Trust (CUHFT) has drawn attention to potential gaps in how rare immune dysregulation disorders are managed within the NHS, after a parent alleged their child’s abnormal test results were repeatedly downplayed or misinterpreted.
Correspondence reviewed by the Romiley Gazette shows that the parent — who has asked to remain anonymous to protect their child’s privacy — contacted the Trust’s Patient Advice and Liaison Service and Data Protection office earlier this week. The complaint details concerns about the handling of their child’s case by several consultants over the past year, including the failure to follow national standards for specialised immunology care.
According to the complaint, the child has persistently elevated IgE levels, abnormal T-cell function, and positive autoantibody findings — all indicators of potential immune dysregulation. Despite this, the parent alleges that recent consultations continued to suggest “parasitic infection” as a possible cause, even though diagnostic tests from other hospitals reportedly ruled this out.
Medical documentation referred to in the complaint includes reports from a tertiary centre confirming no parasitic infection and describing systemic symptoms such as rashes, fatigue, and night sweats. The parent claims that at a recent hospital visit, no physical examination was performed despite these ongoing issues.
The parent’s submission cites the NHS England Service Specification for Specialised Immunology (E03), which requires tertiary immunology centres to:
“Provide lifelong follow-up for all patients with clinical or laboratory evidence of immune dysregulation, regardless of whether a genetic mutation is identified,”
and to “accept and monitor cases referred by secondary centres where there is functional immune abnormality, such as cytokine autoantibodies or raised IgE above 2000 kU/L.”
The complaint argues that these criteria are clearly met in this case and that the lack of ongoing specialist monitoring constitutes a breach of the national standard.
Experts in clinical immunology, speaking generally to the Gazette, say the case highlights the difficulties faced by patients with complex or rare immune system abnormalities.
“These are not straightforward conditions,” said one consultant not involved in the case. “They often cross the boundaries between allergy, immunology, dermatology and infectious disease. When test results are ambiguous, there’s a real risk of patients falling between specialisms.”
The complaint also raises questions about data accuracy in medical records, after the parent alleged that certain abnormal results had been described as “normal” or omitted from summaries sent between departments.
The Gazette understands the family is seeking reassessment under a tertiary immunology service and has asked NHS England to review whether the case meets the criteria for national oversight.
As awareness grows of rare immune dysregulation syndromes — conditions that can mimic allergy, infection or autoimmune disease — the case underscores a broader challenge for the NHS: how to ensure that complex laboratory data translate into consistent, long-term patient care.
