Prevention of Future Deaths reports · 2014

Nathan Douthwaite

Regulation 28 report to prevent future deaths, reference 2014-0084, written 28 Feb 2014. A coroner writes one of these when an inquest reveals a risk that could cause further deaths unless something changes.

Date of report28 Feb 2014
Reference2014-0084
DeceasedNathan Douthwaite
CoronerAndrew Tweddle
Coroner areaCounty Durham & Darlington
CategoryHospital Death (Clinical Procedures and medical management) related deaths
Organisation namedCounty Durham and Darlington NHS Foundation Trust
Sourcejudiciary.uk record · original PDF
Responses published1

The report

Text recovered by OCR from a scanned PDF. OCR is imperfect: check anything you rely on against the source PDF. Reproduced verbatim, including the scan's own layout.

REGULATION 28 REPORT TO PREVENT FUTURE DEATHS

THIS REPORT IS BEING SENT TO:

County Durham and Darlington NHS Trust, Darlington Memorial Hospital,

Hollyhurst Road, Darlington, DL3 6HX

2. National Institute for Health and Care Excellence, 10 Spring Gardens,
London SW1A 2BU

3. Department of Health, Ministerial Correspondence, Richmond House, 79

Whitehall, London SW1A 2NS

CORONER
| am Andrew Tweddle, senior coroner, for the coroner area of County Durham and
CORONER’S LEGAL POWERS
| 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.

see attached sheet
INVESTIGATION and INQUEST

On 23rd December 2010 | commenced an investigation into the death of Nathan
Douthwaite aged 17 years. The investigation concluded at the end of the inquest on 25
February 2014.. The conclusion of the inquest was natural causes, the cause of death
was

4a, Abdominal compartment syndrome, perforated caecum

1b, Hirschsprung’s disease.
CIRCUMSTANCES OF THE DEATH

Nathan was born in November 1993 at full term and passed meconium on the first day
of life and continued to open his bowels regularly over several days in hospital after
birth. In 1995 when Nathan was 21 months old there is mention in his medical records
of him suffering from constipation (with blood in the stool). In 1999 Nathan was admitted
to hospital for his first clear out of faeces. In 2000 was 6 % years old he began
treatment with a consultant paediatrician who had particular interest in paediatric
constipation and who was involved in his care until his death in December 2010. During
this 10 year period Nathan was frequently seen at hospital suffering from severe bouts
of constipation and by 2010 had been admitted to hospital on 13 occasions for clear out
of faeces. His treating consultant in 2007 on his 10" admission for faeces described his
abdomen as “grossly distended” and with “the most enormous faecal mass the size and
shape of a rugby ball extending from pelvis to diaphragm with gross distention of the
colon”. The clear out took the “best part of 3 weeks, with medication”. In 2007 Nathan
was referred to a regional paediatric surgeon in Newcastle with a view to consider an
antegrade enema continence procedure (ACE). This specialist considered a diagnosis
of Hirschsprung's Disease exceptionally unlikely. The specialist nurse did not believe
that Nathan was likely to comply with post ACE procedures and he was not seen again
by the surgical team. In 2010 it was noted that he lost 11.8 kilograms (over 17%) of his
body weight. Nathan's treating consultant had made a diagnosis of functional
constipation. She had not thought that he was suffering from Hirschsprung’s disease.
Nathan was admitted to hospital at 04.20 hours on the 21° of December 2010 as an
emergency and died at 07.15 hours. At autopsy there was presence found of a massive
megacolon with compression of the abdominal and thoracic organs consistent with
abdominal compartment syndrome, together with a perforation of the caecum which was
considered to be a very late event. The cause of death given was

4a. Abdominal compartment syndrome, perforated caecum.

1b. Hirschsprung’s disease.

NICE guidelines with regard to Hirschsprung’s disease were introduced in 2010. No
rectal biopsy was performed on Nathan as it was felt at the time (prior to the NICE
guidelines being published) that he did not meet the criteria for Hirschsprung’s disease.

Even after the publication of NICE guidelines Nathan's condition would not have met the
criteria for a rectal biopsy. An independent consultant paediatric surgeon gave evidence
that there was a possibility that there were more cases of undiagnosed Hirschsprung's
disease in older children than it was generally believed, that there was a nationwide
survey being undertaken and that the NICE guidelines with regard to Indications for
rectal biopsy and investigations that should be performed before undergoing an ACE
procedure should be reviewed, when dealing with children with severe constipation.

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. —

It is likely that if Nathan had undergone a rectal biopsy, Hirschsprung’s disease would
have been diagnosed with the opportunity then being available for the appropriate
treatment and thus | consider

(1) That NICE undertake a review of its guidelines in this regard

(2) That Count Durham and Darlington NHS Trust does review its own practices and
procedures in advance of a NICE review and

(3) The Department of Health be aware of the circumstances of this case so that it can
consider whether guidance should be issued in this regard pending the NICE review.
ACTION SHOULD BE TAKEN

In my opinion action should be taken to prevent future deaths and | believe you have the
power to take such action.
YOUR RESPONSE

You are under a duty to respond to this report within 56 days of the date of this report,
namely by 25" April 2014. |, 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.
COPIES and PUBLICATION

| have sent a copy of my report to the Chief Coroner and to the following Interested
Person ia of MSP Legal Services, Hartlepool Ward Hadaway,
Care Quality Commission and to the LOCAL SAFEGUARDING BOARD (where the
deceased was under 18)].

| 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.

Dated - 28/2/14

——— =

Signed. NJ eat

A TWEDDLE LLB
HM SENIOR CORONER
COUNTY DURHAM AND DARLINGTON

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 Department of Health (PDF)
r:

| Department
of Health

POC1_846066

Mr A Tweddle
Senior Coroner

HM Coroner’s Office
PO Box 282

Bishop Auckland

Co Durham

DL14 4FY

De be. Fore dale,

From the Rt Hon Jeremy Hunt MP
Secretary of State for Health

Richmond House
79 Whitehall
London

SWIA 2NS

Tel: 020 7210 3000
Mb-sofs@dh. gsi.gov.uk

14 APR 2014

Thank you for your letter following the inquest into the death of Nathan
Douthwaite. In your report you conclude that the medical cause of death was
abdominal compartment syndrome, perforated caecum and Hirschsprung’s
disease. I was very sorry to read of the events that led to the death of Mr
Douthwaite and wish to extend my sincere sympathies to his family.

I understand Mr Douthwaite had suffered from severe constipation all his life and
had frequent contact with health services. In 2000 when he was 6 years old he
began treatment with a consultant paediatrician with a particular interest in
paediatric constipation, who was involved in Mr Douthwaite’s care until his death.
In 2007 Mr Douthwaite was referred to a regional specialist paediatric surgeon,
who considered Hirschsprung’s disease exceptionally unlikely.

During 2010, Mr Douthwaite lost 17% of his body weight. His treating consultant
made a diagnosis of functional constipation and did not diagnose Mr Douthwaite
as suffering from Hirschsprung’s disease. On 21 December 2010 Mr Douthwaite
was admitted to hospital as an emergency and died the same day. An autopsy
found a massive mega-colon, signs of abdominal compartment syndrome and
perforation of the caecum. The cause of death is given as abdominal compartment
syndrome, perforated caecum and Hirschsprung’s disease.

The National Institute for Health and Care Excellence (NICE) published a clinical
guideline covering Hirschsprung’s disease in 2010. Rectal biopsy is given as a

method of diagnosis for Hirschsprung’s disease. No rectal biopsy was ever
performed on Mr Douthwaite as he did not meet the criteria for Hirschsprung’s.
Even under NICE’s guidelines on constipation, published in May 2010, Mr
Douthwaite’s condition did not meet the criteria for rectal biopsy.

In evidence given to you by an independent consultant paediatric surgeon, it was
suggested that there were more cases of undiagnosed Hirschsprung’s disease in
older children than is generally considered. It was also suggested that the relevant
2010 NICE guidelines should be reviewed for dealing with children with severe
constipation.

You consider that had Mr Douthwaite undergone a rectal biopsy, it is likely that
Hirschsprung’s disease would have been diagnosed and he could then have been
provided with appropriate treatment.

You therefore suggest:

e that NICE undertakes a review of the relevant guidelines;

e that County Durham and Darlington NHS Trust reviews its own practices and
procedures in advance of a NICE review; and,

e that the Department of Health be aware of the circumstances of this case so
that it can consider whether guidance should be issued pending the NICE
review.

I am advised that this was a rare and unusual case as the majority of cases of
Hirschsprung’s Disease are diagnosed within the first few weeks of life by
specialist consultants following referral from primary or secondary medical care.

I note that you have written to NICE about this case and that Po

has already responded. As you may be aware, NICE’s clinical guidelines
represent best practice and are based on the best available evidence and developed
through wide consultation. NICE regularly reviews its published guidance to take
account of the latest available evidence.

has confirmed that NICE will shortly be starting a search for evidence
to inform the review of its current clinical guidance on constipation in children
and young people. He expects to publish the decision on whether the guidelines
should be updated on NICE’s website in June 2014. As mentioned above, NICE
published its clinical guideline on the diagnosis and management of idiopathic
childhood constipation in primary and secondary care in May 2010.

Department
of Health

The guidelines as they currently stand do not encourage rectal biopsy unless
specific criteria are met and unless certain features are present. The clinical
guideline recommends that a rectal biopsy is not performed unless any of the
following clinical features of Hirschsprung's disease are or have been present:

e delayed passage of meconium (more than 48 hours after birth in term
babies)

constipation since first few weeks of life

chronic abdominal distension plus vomiting

family history of Hirschsprung's disease

faltering growth in addition to any of the previous features.

Once NICE publishes guidance, health professionals and the organisations that
employ them are expected to take the guidance fully into account when deciding
how to diagnose and treat people. However, NICE guidance is not a substitute for
the knowledge and skills of health professionals and treating clinicians must decide:
the most clinically appropriate course of action for each patient.

You ask the Department of Health to consider issuing interim guidance relating to
this case pending the NICE review. NICE however has the statutory function of
producing clinical guidelines. I consider that the expertise and responsibility lies
with NICE in considering the need to update its existing guidance on constipation.
Neither the Department of Health nor NHS England has the power or expertise to
issue interim clinical guidelines as you propose.

NHS England has also considered whether a patient safety alert would be
appropriate. However the circumstances of this case do not fall within the scope of
an alert. The new patient safety alerting system requires that specific issues are
identified for the purposes of creating an alert and it is important not to use alerts
where guidelines are appropriate.

NHS England believes however that the circumstances of this tragic case merit
dissemination to NHS learning networks to minimise the chances of any
recurrence. To highlight the lessons to be learnt, NHS England will be placing an
entry on its networks website.

I hope that this response is helpful and I am grateful to you for bringing the sad
circumstances of Mr Douthwaite’s death to my attention.

‘Gor sins
ke *

a
JEREMY HUNT

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