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National Maternity Support
    Foundation (NMSF)
 Prevention Agenda 2011




          March 2011
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
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.
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
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.
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.
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
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

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NMSF Prevention Agenda 2011

  • 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