Freddie Oliver DOBINSON-EVANS · Prevention of Future Deaths report

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Issued 14 Mar 2018•Inner North London

Published report and response evidence

This report’s concerns and statements found in recipients’ published responses. Statements are included even where no link to an individual concern is recorded. A link shows an evidence connection; it does not assign responsibility.

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Concerns
2

Raised in this report

Recipients
2

Named on the report

Responses found
1

Of 2 recipients

Stated actions
1

Described in responses

Recipients and published responses

Full report text

This is the full text from the original published report.

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Concerns and recipient responses

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Concerns raised2

  1. Failure to communicate genetic test results accurately
    Part of recurring concern: Failure to communicate safety-critical care information effectively between care providers and familiesPart of recurring concern: Failure to ensure clinical investigation results are reliably available, interpreted and acted upon
  2. Failure of genetic testing to detect a pathogenic gene mutation
    Part of recurring concern: Unreliable detection and reporting of clinically significant genetic variants

Stated actions An action is something a recipient says it has done, is doing, or plans to do in response to a concern raised.1

  1. Barts Health NHS Trust

    Ensure effective ongoing communication between the paediatric neurology team and clinical scientists to clarify genetic test results.

Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Failure to communicate genetic test results accurately

Wider context from the report

“Following a testing request made for Freddie on 20 February 2017, a report was issued from the laboratory at Great Ormond Street Hospital on 7 June 2017. It was headlined: No clearly pathogenic variant detected. Diagnosis not confirmed. ████████ spoke to Freddie’s father the following day and told him that Freddie’s genetic test results were “absolutely normal”. In fact, Freddie did have a pathogenic gene mutation in the SCN1A gene and died as a result of Dravet Syndrome. By the time the report was issued, Freddie had already sadly died and so of course the misdiagnosis had no consequences for him, but such a situation could have significant consequences for another child. ”

Is this part of a recurring concern?

Yes — Failure to communicate safety-critical care information effectively between care providers and families; Failure to ensure clinical investigation results are reliably available, interpreted and acted upon.

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Source evidence

How this individual concern was interpreted

PFD Monitor created a concise, searchable interpretation from the report wording shown below. Response links show a clear evidence connection; they do not assign responsibility.

PFD Monitor interpretation

Failure of genetic testing to detect a pathogenic gene mutation

Wider context from the report

“Following a testing request made for Freddie on 20 February 2017, a report was issued from the laboratory at Great Ormond Street Hospital on 7 June 2017. It was headlined: No clearly pathogenic variant detected. Diagnosis not confirmed. ████████ spoke to Freddie’s father the following day and told him that Freddie’s genetic test results were “absolutely normal”. In fact, Freddie did have a pathogenic gene mutation in the SCN1A gene and died as a result of Dravet Syndrome. By the time the report was issued, Freddie had already sadly died and so of course the misdiagnosis had no consequences for him, but such a situation could have significant consequences for another child. ”

Is this part of a recurring concern?

Yes — Unreliable detection and reporting of clinically significant genetic variants.

Open source report

Source evidence

How this respondent action was interpreted

PFD Monitor created a concise, searchable interpretation from the published response wording shown below.

PFD Monitor interpretation

Ensure effective ongoing communication between the paediatric neurology team and clinical scientists to clarify genetic test results.

Verbatim wording from the response

“6. I will ensure that myself and the paediatric neurology team members keep effective communication with the Clinical scientists shall there remain in clarities.”

Source location

2018-0078-Response-by-Barts-Health-NHS-Trust
Page 2 · response
Published 16 June 2018

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Information checked against the published report and official responses · Data reviewed 7 Sep 2026 · About data quality and limitations

Data last updated 7 September 2026