Evidence submitted by the Foundation for
the Study of Infant Deaths
With regard to the DCA's "Coroner Service
Reform Briefing Note" of Feb 06, following are FSID's comments:
FSID wholeheartedly supports the DCA's aims
on page 1 of the Briefing Note, we agree with the case for reform
outlined in the paper, and in general we support the proposals
outlined, in particular the need for coroners to have better medical
advice and support to help them in their investigations. There
are a few specific points we would like to raise.
1. Page 1, second column, first bullet point—states
that coroners should have discretion not to hold an inquest. FSID
has no objection in principle. We know that inquests can be terrifying
and confusing for bereaved parents. FSID has argued for inquests
to take place in private in the case of sudden unexpected infant
death (see the Kennedy report), as an alternative to the painful
intrusion into personal lives caused by public inquests with the
press present. However, whether or not an inquest is held, and
whether public or private, it is essential in the case of sudden
unexpected and unexplained infant death that there is a comprehensive
multi-disciplinary medical/forensic/social services investigation
into the death, undertaken to a standard protocol based on that
recommended in the Kennedy report, the results of which are submitted
to and taken into account by coroners. FSID would like to emphasise
that all sudden unexplained infant deaths must have a full multi-disciplinary
investigation, whether or not the death seems suspicious to any
of the professionals, eg police, coroner, paediatrician. FSID
has published a paper, "Sudden unexpected death and covert
homicide in infancy", S Levene and C J Bacon, Arch. Dis.
Child 2004;89:443-447, which demonstrates that factors of infant
death often considered to be suspicious may have no basis in fact.
We can provide a copy of the paper if desired.
2. Page 1, second column, last paragraph—refers
to the rights of families to proceed quickly with funeral arrangements.
We support this, but would like to point out that, as shown in
the survey of parents' views in the Kennedy report, parents also
want the investigation of their baby's death to be as thorough
as possible in order to have the best chance of discovering why
their baby died. Parents will be willing to accept a delay in
arriving at the cause of death in the interest of getting a more
accurate diagnosis, as long as this does not delay the funeral.
A comprehensive investigation need not delay the funeral and burial/cremation.
3. Page 5, first column, fifth bullet point—points
out that tissues cannot be retained after the coroner no longer
needs them, as per the recent revision to the Coroners Rules.
But FSID would like to take this opportunity to repeat what we
stated in our submissions to Luce, and what was recommended in
the Kennedy report, that these new rules run counter to the wishes
and interests of parents whose babies have died from sudden unexpected
and unexplained infant death. The majority of bereaved parents
agree that tissues (but not whole organs) should be retained routinely
and indefinitely for diagnostic purposes. The definition of cot
death or sudden unexpected death in infancy includes that no cause
or explanation is found at the time of death, but later developments,
such as the death of another child in the family, or medical advances,
may make it extremely valuable to re-examine retained tissues.
The value of such retained material in the case of sudden infant
death has been recognised by every investigation that has looked
into it, including that of the RCPath and the Retained Organs
Commission. These views have, incomprehensibly, been ignored by
those making decisions about the new Coroners Rules.
In conclusion FSID welcomes the major points
in the Briefing Note, including the need for an improved service
for bereaved families, national guidance for coroners including
training, medical involvement, and audit. With regard to medical
involvement, I would like to mention just one more point: we and
the Kennedy report have recommended that, in addition to or as
part of the involvement of the proposed Chief Medical Advisor,
it is essential at the local level that a paediatrician visit
the home when a death has taken place to take a complete medical
history and view the scene of death to assess possible environmental
factors, and that information from this home visit should be part
of the multi-disciplinary investigation made available to the
coronial investigation.
Attached (not printed) are three documents:
FSID's submission Oct 01 to the Home Office Review of Coroners'
System chaired by Tom Luce; FSID's submission to the consultation
paper published in August 02 by Tom Luce; and FSID's response
to the Shipman Inquiry discussion paper of Oct 02. These outline
FSID's views on the present system and our recommendations for
reform. I would also draw your attention to Appendix 1 of "Sudden
unexpected death in infancy", report of a working group convened
by RCPath and RCPCH, chaired by Baroness Helena Kennedy, published
in 2004—this is a chapter titled, "Parents' perspective
on the investigation of sudden unexpected death in infancy",
written by FSID.
Joyce Epstein
Director
Foundation for the Study of Infant Deaths
May 2006
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