Prevention of Future Deaths reports · 2021

Luke Jackson

Regulation 28 report to prevent future deaths, reference 2021-0052, written 21 Feb 2021. A coroner writes one of these when an inquest reveals a risk that could cause further deaths unless something changes.

Date of report21 Feb 2021
Reference2021-0052
DeceasedLuke Jackson
CoronerSonia Hayes
Coroner areaMid Kent and Medway
CategoryHospital Death (Clinical Procedures and medical management) related deaths · Child Death (from 2015)
Organisation namedMedway NHS Foundation Trust
Sourcejudiciary.uk record · original PDF
Responses published3

The report

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

ANNEX A 

REGULATION 28:  REPORT TO PREVENT FUTURE DEATHS (1) 

NOTE: This form is to be used after an inquest. 

REGULATION 28 REPORT TO PREVENT FUTURE DEATHS 

THIS REPORT IS BEING SENT TO: 

1.  Matt Hancock – Department of Health 
2.  Prof 
3.  Chief Executive Officer Medway NHS Foundation Trust  

 – Chair Royal College of General Practitioners 

1 

CORONER 

I am Sonia Hayes assistant coroner, for the coroner area of Mid Kent & Medway 

2 

CORONER’S LEGAL POWERS 

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

http://www.legislation.gov.uk/ukpga/2009/25/schedule/5/paragraph/7 
http://www.legislation.gov.uk/uksi/2013/1629/part/7/made 

3 

INVESTIGATION and INQUEST 

On  20th  December  2019  an  investigation  was  commenced  into  the  death  of  LUKE 

OWEN  JACKSON,  9.  The  investigation  concluded  at  the  end  of  the  inquest  on  7th 

October 2020. The conclusion of the inquest was a narrative and the cause of death 

1a  Hypoxic  Ischaemic  Encephalopathy  due  to  prolonged  Cardiac  Arrest  1b 

Hypokalaemia  1c  Pneumonia  II  Becker's  Muscular  Dystrophy,  Epilepsy,  Post-

Obstructive Hydrocephalus with VP shunt in situ 

       Luke died on palliative care at the Evelina Children's Hospital on 12th December 2019 of  

         an Hypoxic Ischaemic Encephalopathy due to prolonged Cardiac Arrest caused by  

        Hypokalaemia due to Pneumonia. He was transferred from Medway Maritime Hospital on  

        6th December 2019 following Cardiac Arrest having been admitted on 4th December with  

        seizures, lower respiratory tract infection and Hypokalaemia. A history of diarrhoea and  

        vomiting was caused by diversion of blood away from the gut as physiological  

        compensation rather than infection. His Becker's Muscular Dystrophy and complex history  

        meant that Luke was unable to correct his potassium as he had lower muscle mass and  

        this resulted in total potassium depletion and raised heart rate. Luke's cardiac arrest was  

        avoidable had his Hypokalaemia been appropriately recognised, managed, and treated in  

        hospital. 

1 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
        
 4 

CIRCUMSTANCES OF THE DEATH 

Luke had a complex medical history with Becker’s Muscular Dystrophy (later confirmed on 
genetic testing) and was being treated for a chest infection. He was admitted to Medway 
Hospital with a lower respiratory chest infection and acute gastroenteritis  4 December 2019 
He had a fever, tachycardia and hypokalaemia (deficiency of potassium in the bloodstream) 
with high lactate treated with IV fluids with potassium and antibiotics. Further fluids were 
prescribed without potassium.  On the evening of 05 December, Luke was started on 
humidified oxygen for mild respiratory distress and his oxygen levels were being monitored. 
A blood gas was requested, it was not performed. IV fluids were restarted (without 
potassium). His arm was noted to be very floppy. Luke went into cardiac  arrest whilst an 
inpatient at 06:55 on 06 December 2019 from which he was resuscitated and transferred to 
the PICU at Evelina Children’s Hospital the same day where he was treated and later died  
on palliative care.  

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 could occur unless action is taken. In the 
circumstances it is my statutory duty to report to you. 

The Trust has taken action to address the conclusions of its Root Cause Analysis and has 
learned and disseminated lessons, improving its processes. This Report is made to assist 
learning in the public interest as evidence was heard from a consultant from a specialist 
children’s hospital that total body potassium depletion is not always recognised in children 
with myopathies who become unwell. They may present with diarrhoea and vomiting due to 
shunting of the blood away from the gut to protect vital organs such as the brain and heart.  

The MATTERS OF CONCERN are as follows:  – 

(1) Luke had complex needs and was awaiting results of genetic testing confirmed as 

Becker’s Muscular Dystrophy. He had not been eating and drinking, had loose stools 
and vomiting that had progressed over a five-day period in a background of a chest 
infection. His parents had sought and followed medical advice from the hospital by 
telephone. Luke continued to deteriorate, and he was admitted. The Trust took some 
steps on admission to address his low potassium.  

(2) Evidence was heard from a Consultant from the Evelina Children’s Hospital that they 
get almost 2000 referrals a year and many have diarrhoea and vomiting as a first 
symptom. Issues relating to metabolic derangement in a child with myopathies is not 
always recognised as total body potassium depletion and that treatment may need to 
be undertaken in intensive care due to the increased amounts of potassium required to 
correct the derangement and manage clinical risks: 

(i) 

(ii) 

(iii) 

(iv) 

Children with Myopathies - have low muscle mass that compromises their 
ability to correct their own potassium levels when unwell.  

Luke had a chest infection, however his low potassium made him weaker and 
as it progressed, he was shunting blood away from his gut to compensate (this 
assists to protect the vital organs such as the heart and brain) which resulted 
in loose stools and vomiting; this was not a consequence of gastroenteritis. 
One of the early symptoms of this shunting process is a high heart rate.  

A bolus of potassium and fluid resuscitation to treat gastroenteritis was not 
sufficient to treat total body potassium depletion which requires a central line 
with significant potassium replacement in intensive care to manage clinical 
risk.  

Development of a chest infection requires a child to breath harder and this 
becomes more difficult in a child with myopathies that is already weakened due 
to low potassium and will not present with the usual symptoms of respiratory 
distress. 

2 

(v) 

As Luke was treated with oxygen therapy, the monitor alarm set for oxygen 

 
 
 
 
 
 
 
 
 
  
 
 
 
 (iv) 

(v) 

Development of a chest infection requires a child to breath harder and this 
becomes more difficult in a child with myopathies that is already weakened due 
to low potassium and will not present with the usual symptoms of respiratory 
distress. 

As Luke was treated with oxygen therapy, the monitor alarm set for oxygen 
saturations did not sound as his oxygen did not deplete and he went into 
cardiac arrest. 

6 

ACTION SHOULD BE TAKEN 

In my opinion action should be taken to prevent future deaths and I believe you and your 
organisation 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 19th April 2021. I, the coroner, may extend the period. 

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 Chief Coroner and to the following Interested 
Persons 
representative for Guy’s & St. Thomas’ NHS Foundation Trust. I have also sent it to 

 (parents of Luke) and 

(legal 

 (Evelina London Children’s Hospital) and 

 (Medway Hospital) who may 

find it useful or of interest. 

I am under a duty to send a copy of your response to the Chief Coroner and all 
interested persons who in my opinion should receive it. 

I may also send a copy of your response to any other person who I believe may find it 
useful or of interest. 

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 coroner, at the time of your response, about the 
release or the publication of your response. 

9 

 Signature: 

 Sonia Hayes Assistant Coroner Mid Kent and Medway 
 21st February 2020 

3

Responses

3 responses 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 Dept of Health and Social Care (PDF)
From Jo Churchill MP 
Parliamentary Under Secretary of State for Primary Care and Health Promotion 

Sonia Hayes 
HM Assistant Coroner, Mid-Kent and Medway 
Cantium House 
County Hall 
Sandling Road 
Maidstone 
Kent ME14 1XD 

39 Victoria Street 
London 
SW1H 0EU 

14 May 2021 

Dear Ms Hayes 

Thank you for your letter of 1 March 2021 to Matt Hancock about the death of Luke Owen 
Jackson.  I am replying as Minister with responsibility for child health and I am grateful for 
the additional time in which to do so.  

Let me start by saying how deeply sorry I am for the failings in care highlighted in your 
report.  That your investigation found that Luke’s cardiac arrest was avoidable had he 
received the right treatment for Hypokalaemia is extremely distressing and I offer my most 
heartfelt sympathies to Luke’s parents and all those affected by his death.  Clearly, we 
must take the learnings from Luke’s death to ensure patients continue to receive the very 
best care from the NHS.  

In preparing this response, my officials have made enquiries with NHS England and NHS 
Improvement (NHSEI); the National Institute for Health and Care Excellence (NICE); and 
the Royal College of Paediatrics and Child Health (RCPCH).   

I am informed that in its response to your report, the Medway NHS Foundation Trust has 
explained the action it has taken to update its paediatric guidelines in relation to patients 
with myopathies. This is to include the factors that doctors need to be aware of in clinical 
presentation; the requirement for patients to be fully assessed prior to discharge by at 
least a Registrar level clinician; and, to make clear the low threshold for admission to high 
dependency and the level of monitoring and potassium replacement that should be 
undertaken.   

I am pleased to note the actions taken by the Trust.  It is vitally important that the Trust 
takes all possible learnings from Luke’s death, and that learnings are also taken forward 
nationally.  

In relation to guidance that is available to clinicians, I am advised by NICE that it has 
issued guidance on intravenous fluid therapy in children and young people in hospital 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 (NG291), updated in June 2020.  While the guideline does not give recommendations 
relating to specific conditions, it provides advice on assessment (including checking 
electrolytes) before starting intravenous (IV) fluids (see recommendation 1.2.3)); and, 
recommends that plasma electrolyte concentrations are measured using laboratory tests 
when starting IV fluids (and then at least every 24 hours, or more frequently as indicated 
(see recommendation 1.2.4)). 

The recommendations in this guideline represent the view of NICE, arrived at following 
careful consideration of the evidence available.  When exercising their judgement, 
clinicians are expected to take this guideline fully into account, alongside the individual 
needs of their patient.  However, it is not mandatory to apply the recommendations, and 
the guideline does not override the responsibility of clinicians to make decisions 
appropriate to the specific circumstances of the individual.  

I am advised that the choice of fluid, the frequency with which electrolyte concentrations 
are measured after starting IV fluids, and the subsequent escalation of care, depend on 
the clinical picture and ongoing assessment. 

It is the view of NICE that the current general guidance about assessment, monitoring, and 
altering care as indicated is appropriate.  

Raising awareness among clinicians of how to recognise and manage hypokalaemia in 
children with myopathies is essential.  I am aware that the RCPCH has shared your report 
with the British Paediatric Neurology Association (the BPNA) and that in its response to 
you, the RCPCH has explained the existing courses run by the RCPCH and the BPNA, 
aimed at health professionals, on the recognition and management of neuromuscular 
disorders.   

I am also pleased to note that the RCPCH will consider further work to raise awareness of 
the issues raised by Luke’s death and to promote the current NICE guidance on 
replacement fluid therapy in children and young people.  

I hope this response is helpful.  Thank you for bringing these important matters to my 
attention and once again I offer my sincere condolences to Luke’s family.  

JO CHURCHILL 

1 Overview | Intravenous fluid therapy in children and young people in hospital | Guidance | NICE
Response from Medway Maritime Hospital (PDF)
Medway Maritime Hospital 
Windmill Road 
Gillingham 
Kent 
ME7 5NY 

OFFICE OF THE CHIEF MEDICAL OFFICER 

30 March 2021 

Sonia Hayes 
Assistant Coroner 
Mid Kent and Medway Coroners 
Cantium House 
County Hall 
Sandling Road 
Maidstone 
Kent 
ME14 1XD 

Dear Ms Hayes, 

Prevention of Future Deaths Regulation 28 Report – Luke Jackson 

We refer to your report issued following the inquest touching upon the death of Luke 
Jackson dated 24 February 2021 pursuant to Regulation 28 of the Coroner’s 
(Investigations) Regulations 2013. 

(1) Luke had complex needs and was awaiting results of genetic testing relating to 
Becker’s Muscular Dystrophy.  He had not been eating and drinking and had 
loose stools and vomiting that had progressed over a five-day period on a 
background of a chest infection.  His parents had sought and followed medical 
advice from the hospital by telephone.  Luke continued to deteriorate, and he was 
admitted.  The Trust took some steps on admission to address his low potassium. 

(2) Evidence was heard from a Consultant from the Evelina Children’s Hospital that 

many children among their 2000 referrals each year have diarrhoea and vomiting 
as a first symptom.  Metabolic derangement in a child with myopathy may be 
associated with total body potassium depletion: children with myopathies have a 
low muscle mass that compromises their ability to correct their own potassium 
levels when unwell. This is often not well recognised by treating clinicians. 
Treatment for this condition may need to be undertaken in intensive care due to 
the increased amounts of potassium required to correct the derangement and 
manage clinical risks. 

(3) Luke had a chest infection, however his low potassium made him weaker and as 
it progressed, he was shunting blood away from his gut to compensate (this 
assists to protect vital organs such as the heart and brain) which resulted in loose 
stools and vomiting that were not a consequence of gastroenteritis. One of the 
early symptoms of this shunting process is a high heart rate. In addition, 
development of a chest infection requires a child to breath harder and this is 

 
 
 
 
 
 
 
 
 
 
 
 
 
  
 
 more difficult in a child with myopathies who is already weakened due to low 
potassium and who may as a result not present with the usual symptoms of 
respiratory distress. 

The following is our response in relation to the matters of concerns raised: 

The Trust has updated their Paediatric Guidelines (GUDPCM016) in response to 
patients with myopathies to reflect that: 

•  All doctors must be aware that… 

o  These patients are likely to have a low muscle mass and that a low 

serum potassium may indicate underlying deficit in total body 
potassium 

o  Chest infection can lead to blood redistribution from the gut (leading to 

diarrhoea and vomiting) and so mimic gastroenteritis 

o  Respiratory compromise may not show by typical symptoms and signs. 

•  These patients must be fully assessed by a Registrar or above (in common 

with oncology patients) before discharge. 

•  These patients must have a low threshold for admission to HDU with full 
cardiac monitoring, saturation monitoring and potassium replacement. All 
children admitted to HDU are now discussed with the South Thames Retrieval 
Service (STRS) as a matter of course.  

The Trust has also updated their Paediatric Guidelines with regards to the 
indications for contacting the STRS in children with hypokalemia and contacting 
STRS.  Our STRS link, Dr 
who has agreed that STRS do not 
expect to be contacted for all children with a serum K < 3.0. The use of dilute 
peripheral solution for potassium remains safe and first line option in District General 
Hospital settings in appropriately chosen patients. 

Yours sincerely,  

Dr 
Chief Medical Officer 

Appendix  1.  Action Plan

 
 
 
 
 
 
 
 
 
 
 
 Appendix 1. Action Plan 

Ref 

Action/Recommendation 

Outcome for patient when 
implemented 

Action Owner: 

Progress notes: 

1 

2 

3 

4 

Ensure abnormal results are 
recognised and escalated to 
Consultant.  

Improved monitoring enabling 
better management and care to be 
delivered. 

Paediatric Consultant 

Develop a guideline for recognition 
and management of low K+ on the 
paediatric ward. 

Improved monitoring enabling 
better management and care to be 
delivered. 

Paediatric Consultant 

Amend medical handover sheets 
to highlight abnormal results in 
bold 

Improved monitoring enabling 
better management and care to be 
delivered. 

Paediatric Consultant 

Consultant and nurse in charge to 
ensure structured handover every 
time. 

Improving the quality of handover 
ensures accurate information 
including management plans, is 
conveyed to relevant teams. 

Paediatric Consultant/ 
Matron 

Abnormal results, particularly electrolyte 
abnormalities are highlighted at hand-over. 

Handover includes abnormal electrolyte 
results. 

Consultant oversees handover twice daily on 
weekdays and once daily over the weekend. 

Examples of recent awareness – two patients 
with low potassium and guidelines followed 
within same shift. 

Example of awareness – Datix incident forms 
completed by senior nurse prior to next 
handover with immediate action taken by 
medical staff. 
The full algorithm has been prepared and was 
ratified through clinical governance procedure. 
Page 94 and 95 of Paediatric Guidelines. 

Completed and uploaded to QPulse (Trust 
document management system) in January 
2021 and updated March 2021. 
Junior doctors and nurses are reminded at 
every handover to highlight abnormal or 
concerning results. 

Completed and reviewed twice daily 
(weekdays) and once daily (weekends) by 
consultant. 
This is an on-going practice and will be 
reinforced to all colleagues. 

Morning handover (including weekends) is led 

 
 
 
 
 
 
 
 by consultant and nurse in charge (as per 
rota). 

Night handover (including weekends) is led by 
specialty registrar and nurse in charge (as per 
rota). 

Weekday evening handover, led by consultant 
and nurse in charge (weekdays 5pm as per 
rota). 

To be highlighted at Induction. 

Participation of Consultants and nurses in 
Simulation exercises has improved.  

Through Nurse Study days and other training. 

Awareness of good record keeping written on 
handover sheet, and reviewed at each 
handover. 

Junior doctors to undergo 
European paediatric life support 
training as soon as they start in 
the Trust. 

Earlier recognition leads to better 
monitoring and management with 
better outcome. 

Paediatric Consultant 
/  
Senior Resuscitation 
Officer / Consultant 
Anaesthetist & 
Simulation Lead 

Enhances recognition and 
management of dehydration. 

Matron 

5 

6 

7 

Awareness and improved 
accuracy of documentation of 
input and output. 

Children with myopathy  

a.  Ensure awareness of 

doctors that increased risk 
of low muscle mass, low 
total body potassium, 
chest infection can cause 
gut blood redistribution, 
and atypical respiratory 
symptoms and signs of 
compromise 

b.  Be fully assessed with a 

low threshold for 
admission to High 
Dependency unit for full 
cardiac and saturation 
monitoring, by a Registrar 
or above, noting higher 
risk for respiratory 

Improved safety for vulnerable 
group by increased awareness 
and increased monitoring by 
senior doctors in team 

Paediatric 
Consultants and 
Paediatric Registrars 

Completed update of Paediatric guidelines 
(version 6.8) uploaded to QPulse March 2021. 

 
 
 
 
 compromise 
c.  Be assessed for 

worsening PEWS 
(observation score) by the 
Registrar or above 
d.  Managed appropriately 

based on a-c.
Response from Rcpch (PDF)
Monday, 19 April 2021 

Sent by email to: 

Dear Assistant Coroner S Hayes 

Re: Luke Owen Jackson 
Regulation 28 – Action to Prevent Future Deaths 

We have read carefully your report regarding the tragic and untimely  death of Luke Jackson and 
have discussed this with senior colleagues within the RCPCH. 

The RCPCH supports, educates and develops paediatricians, and the wider child health workforce 
and services, to deliver high quality safe care for infants, children and young people. Given that we 
do not have all the details of the tragic death of Luke Jackson, the RCPCH is unable to comment on 
the specifics of the case. 

We  have  shared  this  report  with  the  British  Paediatric  Neurology  Association  (BPNA)  to  raise 
awareness  on  recognising  and  managing  Hypokalaemia  for  patients  with  reduced  muscle  mass 
with aim of acting to prevent future deaths.  

The RCPCH and BPNA run a variety of courses aimed at the broad spectrum of health professionals 
caring  for  children;  including  primary  care  professionals,  secondary  paediatric  trainees  and 
doctors, and for specialty professionals. We refer the coroner’s attention to this suite of education 
provision and are committed to reviewing and updating these courses with a view to promoting 
best practice and raising the standard of medical care provided to children.  

•  RCPCH - How to Manage: Recognising neuromuscular disorders1 
•  BPNA distance Learning Unit 5 - Neuromuscular Disorders2 
•  BPNA Approaching Children's Tone3 

We  will  be  discussing  with  our  British  Paediatric  Surveillance  Unit  the  suggestion  of  hosting  a 
webinar to increase awareness of this case and to promote current NICE guidance on replacement 
fluid therapy in children and young people in hospital. 4  

1 https://www.rcpch.ac.uk/education-careers/courses/rcpch-course/how-manage-recognising-neuromuscular-
disorders-free-online-jul-2021  
2 https://www.rcpch.ac.uk/education-careers/courses/specialty-group-course/bpna-distance-learning-unit-5-
neuromuscular  
3 https://courses.bpna.org.uk/index.php?page=tone-management  

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 We will also be meeting with the Neonatal and Paediatric Pharmacist Group to discuss case-based 
discussion podcasts and will work through our Medicines Committee to consider the issues from 
this report in any future planning.  

We recognise that medication errors are a significant but preventable cause  of harm to children 
and  young  people,  and  we  have  convened  resources  via  our  MedsIQ  and  Quality  Improvement 
web hubs to improve alerting and information sharing for members and the broader child health 
profession.5  6  Our  partnership  programme  Medicines  for  Children  provides  practice  and  reliable 
advice to parents and families to ensure good quality and reliable information is made available.7  

Thank you for raising this case with us and reminding us of the importance of this work.  

Yours sincerely 

Professor 
President, Royal College of Paediatrics and Child Health 

4 https://www.nice.org.uk/guidance/ng29/resources/algorithms-for-iv-fluid-therapy-in-children-and-young-
people-in-hospital-set-of-6-pdf-2190274957  
5 https://qicentral.rcpch.ac.uk/e-poster_category/medsiq/  
6 https://qicentral.rcpch.ac.uk/medsiq/  
7 https://www.medicinesforchildren.org.uk/

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