Prevention of Future Deaths reports · 2024
Regulation 28 report to prevent future deaths, reference 2024-0237, written 1 May 2024. A coroner writes one of these when an inquest reveals a risk that could cause further deaths unless something changes.
| Date of report | 1 May 2024 |
|---|---|
| Reference | 2024-0237 |
| Deceased | Lilly Proctor |
| Coroner | Oliver Longstaff |
| Coroner area | West Yorkshire (Eastern) |
| Category | Child Death (from 2015) |
| Source | judiciary.uk record · original PDF |
| Responses published | 2 |
Text extracted from the PDF text layer. Reproduced verbatim, including the scan's own layout.
IN THE WEST YORKSHIRE (EASTERN) CORONER AREA
HM AREA CORONER OLIVER LONGSTAFF
IN THE MATTER OF LILLY GRACE PROCTOR
REPORT TO PREVENT FUTURE DEATHS
THIS REPORT IS BEING SENT TO:
1.
2.
Excellence
Health
1
CORONER
, Chief Executive, National Institute for Health and Care
, Chief Executive Officer, Royal College of Paediatrics and Chid
I am Oliver Robert Longstaff, Area Coroner for the Coroner area of West Yorkshire
(Eastern).
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.
3
INVESTIGATION and INQUEST
On 7th April 2022 I commenced an investigation into the death of Lilly Grace Proctor,
28/02/2009. The investigation concluded at the end of the Inquest on 25/04/2024. The
conclusion of the Inquest was a narrative conclusion reflecting Lilly's admission to and
discharge from Pinderfields Hospital over the period 01-02/04/2022, her collapse at
home on the early hours of 03/04/2022 and her death later that day in Pinderfields
Hospital where she had been brought by ambulance.
4
CIRCUMSTANCES OF THE DEATH
Lilly Proctor died on 3rd April 2022 in Pinderfields Hospital, having collapsed at home in
the early hours of the morning. She was 13.
A joint paediatric and forensic post mortem examination gave the cause of her death as
1a) Massive Pulmonary Thromboembolism 1b) Deep Vein Thrombosis 1c) Pathogenic
PROS 1 Variant {said by the pathologists to have been causative of hereditary Protein S
deficiency, a risk factor for venous thromboembolism).
The findings at post mortem were consistent with Lilly having developed a number of
non-fatal pulmonary thromboembolisms prior to her final collapse, and in particular were
suggestive of an old thromboembolism having developed around 6th March 2022 when
she had sought out of hours advice for a pleuritic chest pain.
Lilly had a strong family history of thromboembolic disease, her mother having the
Leiden Factor V mutation with a history of clots and anticoagulation from the age of 16,
and her biological father having had a blood clot some two years before Lilly's death.
On 1st April 2022 Lilly (with her mother) attended the Emergency Department at
Pinderfields Hospital with complaints of shortness of breath and chest pains. Of the five
doctors who saw Lilly before her death, only one of them elicited the history of Lilly's
mother's Leiden Factor V mutation, and none obtained the history of blood clots in both
of Lilly's parents. Her presentation was variously thought to be cardiac in origin,
symptomatic of hypothyroidism, suggestive of pneumonia, attributable to a viral upper
respiratory infection, or related to anxiety.
An independent expert paediatrician gave evidence to the Inquest that features of an
ECG that were thought by treating clinicians to be attributable to Lilly's age were
potentially indicative of a number of conditions, including heart strain and pulmonary
embolus.
Lilly was discharged from hospital on 2nd April 2022 with no formal diagnosis and no
prescribed treatment. She had been unable to complete an exercise test whereby she
had been asked to walk a short distance around the department although her heart rate
(which remained above 100 bpm throughout her admission) was recorded as the same
at the beginning and the end of the test.
The combination of Lilly's ECG, a raised inflammatory marker and Lilly's extreme
breathlessness would have justified an echocardiogram and 24 hour ECG being
performed. Proper consideration of the parental history (if obtained) would have justified
consideration of a CTPA investigation to confirm or exclude a pulmonary embolism,
although the risks associated with that procedure may have militated against it.
It cannot be said on the balance of probabilities that any step taken as an alternative to
discharging Lilly on 2nd April 2022 would have prevented the tragedy of her terminal
collapse the following day.
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:-
(1) Whereas there are screening tools (such as "the Wells criteria") to assist the
detection of pulmonary thromboembolism in adults, no child-specific screening
tool is available in the UK and no existing screening tool for use in the adult
population has been validated for use in children in the UK. The inquest heard
evidence of such child-specific screening tools being developed in other
countries, of which Italy was an example.
(2) NICE Guidance NG158
thromboembolic diseases: diagnosis,
management and thrombophilia testing" is specific to adults. There is no
corresponding guidance applicable to children. Similarly, the NICE Clinical
Knowledge Summary for pulmonary embolism dated September 2023 is specific
to adults with no corresponding publication applicable to children.
"Venous
(3) The rarity of thromboembolism in children gives rise to a concern that without
access to resources similar to those available when dealing with the adult
population, clinicians working with children may be disadvantaged in diagnosing
and treating the condition, to the obvious potential detriment of their patients.
6
ACTION SHOULD BE TAKEN
In my opinion action should be taken to prevent future deaths and I believe you or
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,
2
namely by 28/06/2024. 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;
(Lilly's mother), Mid Yorkshire Teaching Trust..
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 coroner, at the time of your response, about
the release or the publication of your response by the Chief Coroner.
9
Signed:
Date: 01 Ma 2024
3
2 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.
2nd Floor
2 Redman Place
London
E20 1JQ
United Kingdom
25 June 2024
Mr Oliver Longstaff
Area Coroner for West Yorkshire (Eastern)
Sent via email:
Our reference:
Dear Mr Longstaff,
Re: Regulation 28 Prevention of Future Deaths Report in respect of Lilly Grace
Proctor
I write in response to your regulation 28 report dated 1 May 2024 regarding the very sad death
of Lilly Grace Proctor. I would like to express my sincere condolences to Lilly’s family.
We have reflected on the circumstances surrounding Lilly’s death and the concerns raised in
your report. We note your concerns about a lack of guidance on venous thromboembolic
disease in children and the lack of child specific screening tools to assist the detection of
pulmonary thromboembolism.
Following receipt of your report, senior clinical advisors within the patient safety team at NICE
have reviewed the concerns raised. They have advised that incidence of VTE in children is
low –1.4-2.1 cases per 100,000 children per year. This is much lower than the incidence in
adults. In children, the most common risk factors for VTE are the presence of a central venous
catheter (CVC) or conditions such as congenital cardiac disease. Other risk factors include
inherited hypercoagulable state (as in this case), infection, trauma, immobility, malignancy,
and chronic inflammatory conditions.
Given the rarity of VTE in children, existing NICE guidance on VTE does not include children.
Furthermore, the clinical manifestations of severe VTE (such as PE) in children are nonspecific
and often mimic the clinical symptoms of other more prevalent diseases.
Regarding a screening tool, there is no specific screening tool that we are aware of. The Wells
score and the Caprini score (scores used in adults) have both been evaluated in different
paediatric populations, but their performance has not been good, and they cannot be
recommended. There is, therefore, no screening tool that NICE could recommend. We note
you have mentioned child specific screening tools being developed in other countries, but our
clinical advisors are not aware of these and have not seen them used in practice.
In terms of screening for these conditions in relatives of people with inherited thrombophilia,
this is also not straightforward, as there are advantages and disadvantages. There are some
situations where knowing that a child has an inherited defect may improve medical decision-
making, and may give an opportunity to educate about signs and symptoms of VTE, which
could lead to earlier diagnosis (as in this case); or to provide targeted thromboprophylaxis in
clinical situations where the risk of VTE is increased; and to promote lifestyle modifications to
avoid other prothrombotic risk factors (eg, sedentary lifestyle, overweight/obesity, and
smoking).
Conversely, inherited thrombophilia testing during childhood may be inappropriate, given the
low risk of a thrombotic event; interpretation of screening tests can be challenging and may
result in misdiagnosis. There are also ethical concerns about testing in those who may not
have the maturity or understanding to make an informed decision. Screening is also
problematic in situations where there is no clear medical benefit to the individual being
screened.
Nevertheless, NICE will consider the issues raised in your report through our recently
implemented organisation-wide approach to prioritisation and topic selection. This is overseen
by a single prioritisation board that guides the selection and coordination of our guidance
development. We will ask our prioritisation board to consider if guidance should be developed
in this area. In line with our usual practice, decisions made by the prioritisation board will be
published on the NICE website.
I hope this response has helped outline our role and the reasoning behind our lack of guidance
in this specific area and would like to reiterate my sincere condolences to Lilly’s family.
Yours sincerely,
Chief Executive
Page | 2
Sent by email to: Dear Mr Longstaff, Oliver Longstaff Area Coroner West Yorkshire (E) 27 June 2024 Re: RCPCH Response to the Inquest Touching the Death of Lily Grace Proctor A Regulation 28 Report – Action to Prevent Future Deaths Thank you for sharing your report with us regarding the tragic and untimely passing of Lily Grace Proctor. I have shared your report with other senior paediartic colleagues within RCPCH. The details have also been shared with the Association of Paediatric Emergency Medicine We have read your report carefully and would like to offer a response to the matters of concern you have set out. 1. Screening tools to assist the detection of pulmonary thromboembolism / NICE Guidance NG158 “Venous thromboembolic diseases: diagnosis, management and thrombophilia testing” We note your pertinent concerns that, in the absence of resources similar to those available when dealing with the adult population, clinicians working with children may be disadvantaged in diagnosing and treating the condition, to the obvious potential detriment of their patients. We would agree that this is the case. We also note that the annual incidence of venous thromboembolism is very low in children, estimated at 0.07–0.49 per 10,000 children, making this a difficult diagnosis to make given the often insidious and non-specific early symptoms. Paediatricians and other clinicians who see unwell children and young people could benefit from an effective tool to assist the clinical detection of pulmonary thromboembolism in children and young people. Also a national guideline on this topic that is specific to children could be helpful. We would look to the National Institute for Healthcare Excellence to take a lead on this work to help develop a further evidence base or consensus guidance in this complex area of clinical practice. If this is to be taken forward, the College would be happy to assist and provide clinical expertise. 2. Sharing information and learning for quality improvement across the paediatric community RCPCH are currently reviewing our Emergency Care Standards and the information within your report has been shared with our Emergency Care Committee to inform this work. The RCPCH Guideline Directory contains a full list of paediatric guidelines published by the National Institute for Health and Care Excellence (NICE) and the Scottish Intercollegiate Guidelines Network (SIGN), as well as those from other Royal Colleges or paediatric specialty groups which meet the standards for RCPCH endorsement. If the above- mentioned paediatric guidance and screening tools are developed, they will be added to this directory to raise awareness across the paediatric community. Our collegeis also responsible for supporting training and continuing professional development. We will ensure that the learnings from this tragic case are incorporated into any relevant courses, such as our course on How to Manage Non-Malignant Haematology. The College will be sharing information and suggestions for local improvement from your report with our paediatric members via its patient safety portal. The anonymised information within your report, and anticipated response from NICE, will also be shared for discussion with the RCPCH Clinical Quality in Practice Committee, where further actions may be identified. Thank you for seeking our views and reminding us of the importance of this work. Our sincere condolences are with Lily’s family. Yours sincerely RCPCH President
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