Evidence submitted by Epilepsy Bereaved
1. INTRODUCTION
1.1 Epilepsy Bereaved aims to prevent seizure-related
deaths and to provide specialised support for the bereaved. There
are about 3 seizure-related deaths in the UK every day. Approximately
600 of these deaths are sudden and unexpected deaths (SUDEP).
These deaths usually are in the young (20-40 years) and occur
at night during sleep (they are likened to an adult cot death)
and usually occur in the community at home. SUDEP accounts for
about 600 sudden unexpected deaths per annum and is part of a
larger issue of sudden unexpected/unexplained death in the young
(given that in addition there are on a conservative estimate 300
cot deaths per annum and 400 cardiac-related deaths in the young).
1.2 Epilepsy Bereaved has a Scientific Advisory
Committee including 14 experts in epilepsy and sudden death. In
2002 we led a NICE National Sentinel Clinical Audit into Epilepsy-Related
Deaths working in partnership with 5 medical Royal Colleges. We
have also published independent research into the experience of
the bereaved with experience of sudden unexpected death in epilepsy.
In 2006 we worked as a partner with the Royal College of Pathologists
to bring leading experts and organisations concerned with sudden
explained death in the young (Epilepsy Bereaved; Foundation for
the Study of Infant Deaths (FSID) and Cardiac Risk in the Young
(CRY)) together to discuss the system for investigation of death
and the support needs of the bereaved.
1.3 Epilepsy Bereaved welcomes this opportunity
to submit evidence to the Constitutional Affairs Select Committee.
We have had insufficient time to properly review the draft bill,
but are submitting a short statement of our general views at this
time.
2. WHAT PROBLEMS
ARE THERE
WITH THE
CURRENT SYSTEM
2.1 Sudden and unexpected (SUDEP) deaths
in young people with epilepsy require full and appropriate investigation.
Research evidence firmly indicates the importance of post-mortem
in determining the number of epilepsy deaths and the preventative
measures that need to be adopted. Without post-mortem it would
not be possible to identify deaths due to other causes including
suicide; toxic poisoning or alternative mechanisms for sudden
death. It would also not be possible to determine from a public
health perspective to what extent epilepsy deaths could be avoided
by improved services eg counselling on taking of medications and
in some families genetic counselling. The quality of national
statistics on certified cause of death is vital for monitoring
of public health, setting targets for health care policies addressing
a problem and research aimed at reducing sudden unexpected deaths
in the young.
2.2 The National Sentinel Audit 2002 investigated
2,412 post-mortems with epilepsy on the death certificate. The
Coroner investigated 45% of these deaths in England and Wales;
3% in Northern Ireland and the Procurator Fiscal investigated
30%. The deaths were otherwise certified by a doctor.
2.3 The National Audit found, consistent
with previous research, that there were serious disparities in
the level of investigation and certification of epilepsy-related
deaths. The National Audit identified serious quality assurance
issues in relation to post-mortems of epilepsy-related deaths.
The National Audit revealed that investigation and recording of
these deaths was inadequate in 87% of post-mortems and that doctor
certification of epilepsy-related deaths was only inappropriate
in two-thirds.
2.4 We would like to emphasise the importance
of preventative lessons from premature deaths in the young. The
National Clinical Audit of Epilepsy-Related Deaths found that
42% of epilepsy deaths were potentially avoidable. The Government
produced an Action Plan on Epilepsy in 2003 in response to the
National Audit, but no action plan to reduce deaths will be effective
unless there is quality assurance in the accurate investigation
and recording of epilepsy-related deaths.
2.5 Epilepsy Bereaved commissioned an independent
report from the College of Health Report in 2002 to investigate
the experience of the bereaved through sudden death in epilepsy.
This research mirrored the findings of the National Audit finding
that families experienced a lottery of service provision both
before and after an epilepsy-related death leaving bereaved relatives
feeling excluded from information, support and services. One third
of all relatives interviewed were concerned about the investigation
of death and half of all families had difficulties getting relevant
and appropriate information after a death. The College of Health
Research 2002 clearly identified the needs for relatives to have
information about epilepsy-related deaths and how these deaths
should be investigated as well as general information about the
system and sources of support.
2.6 In May 2006 Epilepsy Bereaved worked
with the Royal of College of Pathologists to bring together leading
experts and organisations concerned with sudden unexpected deaths
in the young. This included organisations concerned with a conservative
estimate of some 300 cot deaths per annum; 400 cardiac-related
deaths in the young per annum and some 600 sudden unexpected deaths
in epilepsy per annum. The meeting looked at systems for investigation
of sudden unexpected deaths in both Scotland and England and Wales.
Concern was expressed about the lack of standardisation including
pathologists not being authorised/resourced by Coroners to undertake
necessary investigations into the cause of death. It concluded
with a general consensus that there was an urgent need for standardisation
and quality assurance in the investigation and certification of
all sudden unexpected/unexplained deaths in order to implement
prevention strategies. The meeting also concluded with a recognition
of the vital role of the voluntary sector in working to prevent
deaths and in supporting the bereaved. This is an area of significant
public interest which needs to be addressed.
3. EXISTING PROPOSALS
FOR REFORM
3.1 We support the proposals for a chief
coroner, full-time coroners, fewer districts and medical support
(although we would like to see a strengthening of the independence
of the system with for example recruitment through the Judicial
Appointments Commission). We also support the general provision
within the draft Bill of increased formation to the bereaved and
welcome the appeal rights for the bereaved.
3.2 Our main concern is the omissions in
the draft bill. First, the omission of certification will mean
that many of the bereaved experiencing sudden unexpected/unexplained
deaths in the young will not be given the level and quality of
service in the investigation of death that is necessary. We are
also concerned that the draft bill has removed the requirement
for investigation where a death is "sudden and cause unknown"
and that under the new bill, there continues to be a serious risk
that sudden unexpected/unexplained deaths in the young will lack
standardisation in the level and quality of investigation needed
to begin to use public health strategies to reduce the number
of these deaths. We consider that sudden unexpected deaths where
the cause of death requires ascertainment through specialist investigation
should be identified as a dedicated area on the grounds that there
is a high public interest in reducing unexpected/unexplained deaths
in the young. This is an area that requires particular attention
from a matter of quality assurance and public interest. This public
interest has been recognised by the Chief Medical Officer for
England (Chief Medical Officer's Annual Report 2001) and in a
European White Paper (EUCARE, 2001). The College of Health report
involving 127 relatives in focus group meetings and 78 in depth
interviews found that relatives recommended a dedicated resource
in each local area supported by national guidance on the investigation
and reporting of sudden deaths in the young. Good practice in
the investigation of these deaths should be subject to nationally
recognised guidelines that standardise investigation and ensure
that specialist investigations by pathologists are undertaken
where this is important to ascertain the cause of death. There
needs to be a dedicated resource aimed at a standardised training
for all those involved in the investigation of sudden unexpected/unexplained
deaths. The role of the voluntary sector in supporting relatives
and educating professionals should also be recognised and supported.
3.3 We would like to see a strengthening
of the proposal for a charter for the bereaved through the provision
of some method for enforcement by the bereaved. The voluntary
sector has an important role to play with expertise in the development
of literature and specialised sources of support. Sudden Unexpected/Unexplained
Deaths should be one of the categories identified as a particular
form of loss with information provision about specialist support
services available.
3.4 Regarding process, our experience is
the bereaved are at a disadvantage in the current adversarial
system in the absence of resourced representation. We consider
that an inquisitorial system is preferable to an adversarial system
and that there is a need for advocacy for the bereaved. Specialist
advocates trained in sudden unexpected death; bereavement awareness
and the procedures of the inquest would be a substantial improvement
on the existing system where nearly all the bereaved we are in
contact with have no support at Inquests. A trained lay advocate
system would be a step forward in the absence of legal aid for
Inquests.
3.5 We consider it unfortunate that the
proposed reforms will miss a key opportunity for creation of a
national Coroner Service, with all personnel working within it
responsible to the Chief Coroner. We are concerned that even with
the proposed reforms the system will not adequately address key
issues of fragmentation; standardisation; quality-assurance and
under-resourcing.
4. ALTERNATIVES
TO THE
CURRENT SYSTEM
AS PRACTISED
IN OTHER
JURISDICTIONS
4.1 We have experience in Scotland of the
Fatal Accident Enquiry process. The Findlay Inquiry (October 2002)
concerned a family with two sudden epilepsy-related deaths of
a mother and daughter. The Inquiry into the death of the daughter
some 10 years after her mother led to a determination that the
death of a young woman followed a "catalogue of errors"
and the judge determined that all GPs should audit their epilepsy
patients, that guidelines should be implemented and that most
patients should be given information about the risks of SUDEP.
This was an excellent outcome for the family concerned and for
development of services generally. Although it was not binding
it received significant public interest and in Scotland it led
to the Scottish Executive writing to all Health Boards and Trusts.
It was a major catalyst in Scotland to the introduction of managed
epilepsy clinical networks. This is why we would support an approach
which identified sudden unexpected deaths in the young (whether
potential sudep or cot deaths or cardiac-related) as an area of
public interest where key lessons could be learnt to prevent deaths
in the future.
4.2 In Sweden the investigation of sudden
and unexpected deaths is the responsibility of the local public
health official who may consult medical records and medical personnel
before deciding the appropriate level of investigation.
4.3 We would like to a see a system which
was focused on the public interest in public health eg identification
of cause of death and systems defects. Where there is a sudden
unexpected/unexplained death we would like to see the early involvement
of a dedicated official with training in sudden unexpected/unexplained
deaths in the young and public health who would be consulted by
the Coroner about the level of investigation whether by post-mortem
only or by post-mortem and inquest. Where an inquest is held we
are advocates of the "considered" narrative as developed
by the Scottish Fatal Accident Enquiry System focusing on a factual
account and recommendations to learn lessons and prevent future
deaths. As a specific area of public interest, we would like to
see sudden unexpected/unexplained deaths in the young subject
to a national monitoring by the Chief Coroner.
Jane Hanna
Director
Epilepsy Bereaved
July 2006
| 
