Prevention of Future Deaths reports · 2018

Freddie Dobinson-Evans

Regulation 28 report to prevent future deaths, reference 2018-0078, written 14 Mar 2018. A coroner writes one of these when an inquest reveals a risk that could cause further deaths unless something changes.

Date of report14 Mar 2018
Reference2018-0078
DeceasedFreddie Dobinson-Evans
CoronerMary Hassell
Coroner areaInner North London
CategoryChild Death (from 2015) · Hospital Death (Clinical Procedures and medical management) related deaths
Organisation namedBarts and the London NHS Trust · Homerton University Hospital NHS Trust
Sourcejudiciary.uk record · original PDF
Responses published1

The report

Text extracted from the PDF text layer. Reproduced verbatim, including the scan's own layout.

Regulation 28:  Prevention of Future Deaths report 

Freddie Oliver DOBINSON-EVANS (died 10.04.17) 

THIS REPORT IS BEING SENT TO: 

1.  Dr Lucy Jenkins  

Director  
North East Thames Regional Genetics Laboratory 
Great Ormond Street Hospital for Children 
Levels 5 & 6 Barclay House 
37 Queen Square 
London  WC1N  

2. 

Consultant in paediatric neurology 
Royal London Hospital 
Whitechapel High Road 
London  E1 1BB 

1 

CORONER 

I am:   Coroner ME Hassell 
           Senior Coroner  
           Inner North London 
           St Pancras Coroner’s Court 
           Camley Street 
           London  N1C 4PP 

2 

CORONER’S LEGAL POWERS 

I make this report under the Coroners and Justice Act 2009,  
paragraph 7, Schedule 5, and  
The Coroners (Investigations) Regulations 2013, 
regulations 28 and 29. 

3 

INVESTIGATION and INQUEST 

On  21  April  2017,  one  of  my  assistant  coroners,  Edwin  Buckett, 
commenced an investigation into the death of Freddie Dobinson-Evans, 
aged one year. The investigation concluded at the end of the inquest on 
1 March 2018.   

I made a determination at inquest of death by natural causes.   
I recorded a medical cause of death of: 

1 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 1a  post cardiac arrest syndrome 
1b  Dravet syndrome 

4 

CIRCUMSTANCES OF THE DEATH 

Freddie’s Dravet syndrome was not diagnosed in life.  At the time of his 
death  he  was  being  investigated,  and  a  diagnosis  of  complex  febrile 
convulsions had been made by his treating clinicians. 

5 

CORONER’S CONCERNS 

During the course of the inquest, the evidence revealed matters giving 
rise to concern. In my opinion, there is a risk that future deaths will occur 
unless  action  is  taken.  In  the  circumstances,  it  is  my  statutory  duty  to 
report to you. 

The MATTERS OF CONCERN are as follows.  

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. 

6 

ACTION SHOULD BE TAKEN 

In  my  opinion,  action  should  be  taken  to  prevent  future  deaths  and  I 
believe that you have the power to take such action.  

7 

YOUR RESPONSE 

You are under a duty to respond to this report within 56 days of the date 
of this report, namely by 14 May 2018.  I, the coroner, may extend the 
period. 

2 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 Your  response  must  contain  details  of  action  taken  or proposed  to  be 
taken, setting out the timetable for action. Otherwise you must explain 
why no action is proposed. 

8 

COPIES and PUBLICATION 

I have sent a copy of my report to the following. 

  HHJ Mark Lucraft QC, the Chief Coroner of England & Wales 
  Care Quality Commission for England  
 
  Homerton University Hospital NHS Trust 
  Barts and The London NHS Trust 

, Freddie’s parents 

I  am  also  under  a  duty  to  send  the  Chief  Coroner  a  copy  of  your 
response.  

The Chief Coroner may publish either or both in a complete or redacted 
or summary form. He may send a copy of this report to any person who 
he  believes  may  find  it  useful  or  of  interest.  You  may  make 
representations to me, the Senior Coroner, at the time of your response, 
about  the  release  or  the  publication  of  your  response  by  the  Chief 
Coroner. 

9 

DATE                                                  SIGNED BY SENIOR CORONER 

14.03.18 

3

Responses

1 response published against this report on judiciary.uk. A response is a body's written reply to the coroner's concerns; publication is at the discretion of the Chief Coroner's office, so an absent response does not mean nobody replied.

Response from Barts Health NHS Trust (PDF)
Barts Health NHS Trust 
Paediatric Neurology Department 
8th floor Paediatric Offices 
The Royal London Hospital 
 London, E1 1BB 
Telephone: 020 73777000 ext. 42476 
www.bartshealth.nhs.uk 

Ms Mary Elizabeth Hassell 
Senior Coroner for Inner North London 
St Pancras Coroner’s Court 
Camley Street 
London 
N1C 4PP 

11/05/2018 

Dear Ma’am, 

Inquest touching the death of Freddie Dobinson Evans 

I write in response to a Regulation 28, Report to Prevent Future Deaths, dated 
14 of April 2018, which was made at the conclusion of the inquest into the 
death of Freddie Dobinson Evans. Barts Health NHS Trust takes Coronial 
investigations very seriously and I am sorry you have had to make Preventing 
Future Death recommendations and I am grateful to you for highlighting your 
concerns. 

The concerns you have raised in the Preventing Future Death report are:  

During the course of the inquest, the evidence revealed matters giving rise to 
concern. In my opinion, there is a risk that future deaths will occur unless 
action is taken. In the circumstances, it is my statutory duty to report to you.  

The MATTERS OF CONCERN are as follows: 
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. 
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.  

 spoke to Freddie’s father the following day and told 

 
 
 
 
 
 
 
 
 
  
 
 
 
 
 Following actions were taken: 

1.  I have communicated with 

 (Clinical Scientist and 

director of the genetics lab. GOS hospital), who had promptly 
responded to my email. 

2.  On 24/04/2018, a meeting was held at the Lab. between 

 (GOS hospital Lab manager) and myself 

, Consultant paediatric neurologist), 

3. 

 had listened carefully to the concerns and agreed that there 

are changes in the results format that was on the way and will be 
effective from 01/05/2018. 

4.  These changes were initiated in response to the inquest 

recommendation for prevention of future deaths.  

5.  I was shown the new results’ template; The new template clearly 

addresses future directions in case of presence of any abnormality. 

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

Many thanks 

Consutant paediatric neurologist 
Royal London hospital.

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