The National Maternity Support Foundation's Prevention Agenda outlines a strategy to tackle the issue of stillbirth in the UK, focusing on reducing the rates, improving bereavement care, and alleviating parental stress post-stillbirth. With one in 200 pregnancies resulting in stillbirth and relatively unchanged rates over the past two decades, the foundation calls for a national framework and targeted actions to prevent avoidable deaths. Key actions include a comprehensive audit of prevention studies, a national database for sharing best practices, and ensuring all maternity services provide optimal bereavement care.

1. National Maternity Support
Foundation (NMSF)
Prevention Agenda 2011
March 2011

2. NMSF Prevention Agenda
Foreword
NMSF Prevention Agenda 2011 has three key elements; 1)
How we can accelerate the process of reducing stillbirth; 2)
Preventing sub-optimal bereavement care following a stillbirth and
3) How to prevent unnecessary stress for parents following a
stillbirth.
One in 200 babies is stillborn in the UK.1 This has remained
relatively unchanged for the past 20-years. As a result around
6,500 babies are stillborn or die shortly after birth, which equates
to an average of 17 babies everyday of the year.2 In fact there are
twice as many stillbirths as deaths on Britain’s roads.
We realise there are no easy solutions to reducing and eventually
eradicating stillbirth in the UK. However, we believe that much
more could be achieved by focusing on the prevention of stillbirth
throughout the pregnancy journey.
There is some excellent work being undertaken to understand the
causes of stillbirth and we are working with medical professionals
who are working to develop new diagnostic tools, but this is not
adequate given the current statistics for stillbirth.
According to the Confidential Enquiry into Intrapartum Related
Deaths carried out by the West Midlands Perinatal Institute, 84%
of the deaths were considered to have been potentially avoidable.3
With between 15% and 66%4 of stillbirths being classified as
‘unexplained’ another key strand has been that investigation
through post mortem is one of the core elements to begin the
prevention process of stillbirth. This will ensure a level of
accountability which has been lacking and should ultimately lead
to more stillbirths being prevented in the future.
National Maternity Support Foundation
(NMSF)
NMSF is a registered charity set up following the tragic stillbirth
of Jake Canter due to the nearest hospital maternity unit being
closed. Our founding principles are to take a 'proactive educative

3. NMSF Prevention Agenda
approach' to maternity care occupying the 'sensible middle ground'
of public opinion and to help stop these closures happening.
Much of our previous work has been to treat the after affect of
when a baby dies and the huge impact it has on parents, family,
friends and colleagues. This important work will continue as the
number of babies stillborn remains unacceptably high.
We urge those involved in the Government/Department of Health,
medical profession, and relevant Charities to adopt a similar
attitude in demonstrating they are serious about reducing the
number of babies that are stillborn.
Preventing stillbirth
This is the main focus and most challenging aspect of the
prevention agenda. We realise that there are many excellent
individuals within the health service who champion this cause and
are passionate about preventing stillbirth but they are spread
across the UK and not necessarily all joined up in a way that could
effectively help to reduce the stillbirth rate.
We must also address the potential issues regarding post mortem
examinations following a stillbirth. Is it due to a lack of perinatal
pathologists? Is it that midwives do not inform women of the
benefits adequately? If they do not is that because they do not
understand the issues or because they have no time? Is it that
women are themselves fundamentally concerned about it? These
are some of the questions that need answering.
If we know why babies die then it helps us to develop what
actions will have the greatest preventative impact. It also stops
complacency i.e. thinking it was something about which nothing
could be done. We believe this will lead to a more ‘open’ approach
for parents to have more information and become a key part of
prevention moving forward.
We want the prevention of stillbirth to become a priority for the
Government/Department of Health and urge them to address the
problem with some meaningful targets and work with
commissioners to establish a national framework for reducing
stillbirth.

4. NMSF Prevention Agenda
Action
• Audit of UK stillbirth prevention studies and research to date;
produce ‘gap’ analysis
• National framework for the prevention of stillbirth; set
annual targets to reduce avoidable deaths (work towards a
“Vision Zero” plan)
• Promote early access amongst women to enable
identification of high risk pregnancies
• Pilot an evidence based increased scanning scheme to
understand whether more late scans can identify potential
issues
• Pilot new technology for monitoring baby movements5
• Obstetricians to focus more attention on reducing rates
• National database of all confidential enquiries to be shared
by all NHS Trusts leading to increase in shared of learning/
best practice
• National team to ensure delivery and tangible leadership
from Ministry/Department of Health
• Produce the ’10 Things You Should Know’ postcard on
preventing stillbirth
• Undertake a careful analysis of the evidence to see if we
could pull out the top pieces of advice that Midwives/
Obstetricians might give mothers in terms of prevention
• Commission more research/audit that looks at why we have
such a poor uptake of post-mortem, leading to more
knowledge as to the best action to take in terms of
prevention
• Include in the top NICE standards that every maternity
service be required to ensure that any mother felt able to
call/contact a named midwife with a concern at any time and
provide evidence that those concerns should be taken
seriously
• The Secretary of State for Health to include in his mandate
the requirement for maternity services to show evidence of
taking action to reduce the number of stillbirths
• Develop public health messaging around the prevention of
stillbirth

5. NMSF Prevention Agenda
Preventing sub-optimal bereavement care
Dealing with the death of a baby is perhaps one of the most
difficult areas of maternity care a Midwife or Obstetrician will have
to deal with.
However, it does not excuse health professionals from giving sub-
optimal care at the time when parents and families need it most.
This is often the result of local NHS Trust funding priorities and the
lack of a specialist bereavement midwife and model of care
following the death of a baby.
Around 40% of NHS Trusts in England with maternity services do
not have a specialist bereavement midwife post.6
Action
• Ensure it is compulsory for midwifery courses to learn about
stillbirth and in particular how to offer bereavement care and
counselling with no ‘opt-out’ clause
• Ensure undergraduate midwives are included when incidents
occur
• Feedback to all staff to ensure subsequent pregnancies are
as stress free as possible
• Utilise the online RCM/Sands/Bliss/NMSF ‘Bereavement Care
Network’ to share experiences and best practice
• Ensure all NHS Trusts offering maternity services have a
specialist bereavement midwife in place
• Standardised job specification for specialist bereavement
midwives
• Set national standards/pathways for optimal care following
stillbirth
Preventing unnecessary stress for parents
following stillbirth
Following the death of their baby, parents and their families are
distraught and placed under enormous stress.

6. NMSF Prevention Agenda
Often the level of stress is exacerbated by the lack of clear
understanding as to why this has happened to their baby and what
they should do for the best.
It is critical that a national framework for bereavement care is
published within the NICE guidelines.
Action
• Seek out Obstetrician/Midwife Champions in each NHS Trust
• Set national targets/pathway for PM consent
• Support the Sands audit tool for maternity service for setting
quality standards in this area of care7
• More parent education should be available through parenting
classes, leaflets, discussions with midwives
• Keep parents fully updated with the situation
• Fully involve parents from the outset
• Instil an 'open door' mentality in maternity units
Summary
NMSF believes now is the time for ACTION. For many years
there has been much debate and discussion surrounding the
reduction of the stillbirth rate without demonstrable national
success.
However, a number of regional centres of ‘excellence’ have
evolved, most notably through the work of Professor Jason
Gardosi (MD FRCOG FRC SED) at the West Midlands Perinatal
Institute in Birmingham and Dr Alexander Heazell (PhD MRCOG) at
the University Of Manchester School Of Medicine. We believe this
learning should form the basis of the national strategy for reducing
stillbirth.
We are focused on achieving the objectives set out in our
Prevention Agenda. We believe that by joining forces with other
like minded organisations we will make an even greater impact in
reducing the number of babies being stillborn and make a
significant demonstrable difference.
Sign up to the Prevention Agenda today and help to save
lives.

7. NMSF Prevention Agenda
Ten things you should know about stillbirth
1. One in 200 pregnancies in the UK end in a stillbirth.1
2. The rate of stillbirth in the UK is higher than France,
Germany, Belgium, Norway, Holland, Sweden, Denmark,
USA and Canada and is the same as 20 years ago.
3. There are almost twice as many stillbirths as deaths on
Britain’s roads. In 2008, there were 4,043 stillbirths.
4. 76% of stillbirths occurred in babies that would have
otherwise been expected to survive.1
5. 7% of stillborn babies were alive at the start of labour.
6. The most common factor in stillbirths is a failure to grow
properly in the womb (intrauterine growth restriction).1, 8
This can be identified antenatally.9
7. Care for mothers was “suboptimal” in 45% of cases of
stillbirth.10 It is estimated that 606 babies could be saved
each year just by improving care.
8. Parents who have one stillbirth are 2-10 times more likely to
have a stillbirth in a subsequent pregnancy compared to
women who have a live baby.11, 12
9. A post-mortem will find useful information regarding the
cause of death in 50-60% of cases, changing the diagnosis
in 10%.13-15
10. After stillbirth parents are more likely to have
depression, anxiety and relationship breakdown.16, 17
Provision of bereavement care and counselling is essential.
References
1. Confidential Enquiry into Maternal and Child Health: Perinatal Mortality 2008:
England, Wales and Northern Ireland. Edited by London, Centre for Enquiries into
Maternal and Child Health, 2010, p.
2. Sands Why17? Campaign http://www.why17.org/
3. Confidential Enquiry Into Intrapartum Related Deaths, West Midlands Perinatal
Institute, October 2010 (Professor Jason Gardosi, MD FRCOG FRCSED)
http://www.perinatal.nhs.uk/pnm/clinicaloutcomereviews/WM_IfH_-
_IntrapartumConfidentialEnquiryReport_-_Oct%202010.pdf
4. University of Manchester, School of Medicine, Dr Alexander Heazell (PhD MRCOG)
http://www.medicine.manchester.ac.uk/aboutus/news/StillbirthResearch
5. Smartphone-Based Fetal Monitors Could Save Lives in Remote Areas
http://research.microsoft.com/en-
us/collaboration/focus/health/smartphone_fetal_monitor.aspx
6. NMSF report, Who Cares When You Lose a Baby?
http://www.rcm.org.uk/midwives/features/who-cares-when-you-lose-a-baby/
7. New Audit Tool Launched To Help Maternity Units Improve Bereavement Care For

8. NMSF Prevention Agenda
Parents Whose Baby Has Died http://www.uk-
sands.org/no_cache/News/Newspage/article/190/22.html
8. Gardosi J, Kady SM, McGeown P, Francis A, Tonks A: Classification of stillbirth by
relevant condition at death (ReCoDe): population based cohort study, BMJ 2005,
331:1113-1117
9. Royal College of Obstetricians and Gynaecologists: Green-Top Guideline 31 - The
Investigation and Management of the small-for-gestational-age fetus. Edited by
London, Royal College of Obstetricians and Gynaecologists, 2002, p.
10. Confidential Enquiry into Stillbirths and Deaths in Infancy: 8th Annual Report
Edited by London, Maternal and Child Health Research Consortium, 2001, p.
11. Heinonen S, Kirkinen P: Pregnancy outcome after previous stillbirth resulting
from causes other than maternal conditions and fetal abnormalities, Birth 2000,
27:33-37
12. Reddy UM: Prediction and prevention of recurrent stillbirth, Obstet Gynecol 2007,
110:1151-1164
13. Faye-Petersen OM, Guinn DA, Wenstrom KD: Value of perinatal autopsy, Obstet
Gynecol 1999, 94:915-920
14. Kock KF, Vestergaard V, Hardt-Madsen M, Garne E: Declining autopsy rates in
stillbirths and infant deaths: results from Funen County, Denmark, 1986-96, J Matern
Fetal Neonatal Med 2003, 13:403-407
15. Cartlidge PH, Dawson AT, Stewart JH, Vujanic GM: Value and quality of perinatal
and infant postmortem examinations: cohort analysis of 400 consecutive deaths, Bmj
1995, 310:155-158
16. Gold KJ, Sen A, Hayward RA: Marriage and cohabitation outcomes after
pregnancy loss, Pediatrics 2010, 125:e1202-1207
17. Surkan PJ, Radestad I, Cnattingius S, Steineck G, Dickman PW: Events after
stillbirth in relation to maternal depressive symptoms: a brief report, Birth 2008,
35:153-157
Contact National Maternity Support Foundation (NMSF)
To sign up to the Prevention Agenda or if you have any comments and would like more
information please contact:
Andrew Canter, Chairman, NMSF
Mobile: +44(0)7855 447 157 or Email: andrew@jakescharity.org
Please see our website www.jakescharity.org
Follow us on Twitter: https://twitter.com/#!/NMSFisforjake
Find us on Facebook: http://www.facebook.com/group.php?gid=156899054343715
Donate: www.justgiving/nmsf/donate
NMSF is Jake’s Charity
Charity Registration Number 1118833
In partnership with