National Maternity Support    Foundation (NMSF) Prevention Agenda 2011          March 2011
NMSF Prevention AgendaForewordNMSF Prevention Agenda 2011 has three key elements; 1)How we can accelerate the process of r...
NMSF Prevention Agendaapproach to maternity care occupying the sensible middle groundof public opinion and to help stop th...
NMSF Prevention AgendaAction  • Audit of UK stillbirth prevention studies and research to date;    produce ‘gap’ analysis ...
NMSF Prevention AgendaPreventing sub-optimal bereavement careDealing with the death of a baby is perhaps one of the mostdi...
NMSF Prevention AgendaOften the level of stress is exacerbated by the lack of clearunderstanding as to why this has happen...
NMSF Prevention AgendaTen things you should know about stillbirth   1. One in 200 pregnancies in the UK end in a stillbirt...
NMSF Prevention AgendaParents Whose Baby Has Died Gar...
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NMSF Prevention Agenda 2011


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Our recently launched ‘Prevention Agenda’ for 2011 has the support of many influential health professionals, Government officials and organisations including the RCM, RCOG, FIGO, Sands and Bliss. Our recent focus has been to treat the effect of losing a baby, now we are looking to tackle the issues surrounding preventing stillbirth. We realise this is a particularly challenging task, but we feel the time is right to take action and move this up the health agenda. We also met with Anne Milton MP, Under Secretary of State for Health to move our agenda forward.

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NMSF Prevention Agenda 2011

  1. 1. National Maternity Support Foundation (NMSF) Prevention Agenda 2011 March 2011
  2. 2. NMSF Prevention AgendaForewordNMSF 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 and3) How to prevent unnecessary stress for parents following astillbirth.One in 200 babies is stillborn in the UK.1 This has remainedrelatively unchanged for the past 20-years. As a result around6,500 babies are stillborn or die shortly after birth, which equatesto an average of 17 babies everyday of the year.2 In fact there aretwice as many stillbirths as deaths on Britain’s roads.We realise there are no easy solutions to reducing and eventuallyeradicating stillbirth in the UK. However, we believe that muchmore could be achieved by focusing on the prevention of stillbirththroughout the pregnancy journey.There is some excellent work being undertaken to understand thecauses of stillbirth and we are working with medical professionalswho are working to develop new diagnostic tools, but this is notadequate given the current statistics for stillbirth.According to the Confidential Enquiry into Intrapartum RelatedDeaths carried out by the West Midlands Perinatal Institute, 84%of the deaths were considered to have been potentially avoidable.3With between 15% and 66%4 of stillbirths being classified as‘unexplained’ another key strand has been that investigationthrough post mortem is one of the core elements to begin theprevention process of stillbirth. This will ensure a level ofaccountability which has been lacking and should ultimately leadto more stillbirths being prevented in the future.National Maternity Support Foundation(NMSF)NMSF is a registered charity set up following the tragic stillbirthof Jake Canter due to the nearest hospital maternity unit beingclosed. Our founding principles are to take a proactive educative
  3. 3. NMSF Prevention Agendaapproach to maternity care occupying the sensible middle groundof public opinion and to help stop these closures happening.Much of our previous work has been to treat the after affect ofwhen a baby dies and the huge impact it has on parents, family,friends and colleagues. This important work will continue as thenumber of babies stillborn remains unacceptably high.We urge those involved in the Government/Department of Health,medical profession, and relevant Charities to adopt a similarattitude in demonstrating they are serious about reducing thenumber of babies that are stillborn.Preventing stillbirthThis is the main focus and most challenging aspect of theprevention agenda. We realise that there are many excellentindividuals within the health service who champion this cause andare passionate about preventing stillbirth but they are spreadacross the UK and not necessarily all joined up in a way that couldeffectively help to reduce the stillbirth rate.We must also address the potential issues regarding post mortemexaminations following a stillbirth. Is it due to a lack of perinatalpathologists? Is it that midwives do not inform women of thebenefits adequately? If they do not is that because they do notunderstand the issues or because they have no time? Is it thatwomen are themselves fundamentally concerned about it? Theseare some of the questions that need answering.If we know why babies die then it helps us to develop whatactions will have the greatest preventative impact. It also stopscomplacency i.e. thinking it was something about which nothingcould be done. We believe this will lead to a more ‘open’ approachfor parents to have more information and become a key part ofprevention moving forward.We want the prevention of stillbirth to become a priority for theGovernment/Department of Health and urge them to address theproblem with some meaningful targets and work withcommissioners to establish a national framework for reducingstillbirth.
  4. 4. NMSF Prevention AgendaAction • 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. 5. NMSF Prevention AgendaPreventing sub-optimal bereavement careDealing with the death of a baby is perhaps one of the mostdifficult areas of maternity care a Midwife or Obstetrician will haveto 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 thelack of a specialist bereavement midwife and model of carefollowing the death of a baby.Around 40% of NHS Trusts in England with maternity services donot have a specialist bereavement midwife post.6Action • 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 stillbirthPreventing unnecessary stress for parentsfollowing stillbirthFollowing the death of their baby, parents and their families aredistraught and placed under enormous stress.
  6. 6. NMSF Prevention AgendaOften the level of stress is exacerbated by the lack of clearunderstanding as to why this has happened to their baby and whatthey should do for the best.It is critical that a national framework for bereavement care ispublished 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 unitsSummaryNMSF believes now is the time for ACTION. For many yearsthere has been much debate and discussion surrounding thereduction of the stillbirth rate without demonstrable nationalsuccess.However, a number of regional centres of ‘excellence’ haveevolved, most notably through the work of Professor JasonGardosi (MD FRCOG FRC SED) at the West Midlands PerinatalInstitute in Birmingham and Dr Alexander Heazell (PhD MRCOG) atthe University Of Manchester School Of Medicine. We believe thislearning should form the basis of the national strategy for reducingstillbirth.We are focused on achieving the objectives set out in ourPrevention Agenda. We believe that by joining forces with otherlike minded organisations we will make an even greater impact inreducing the number of babies being stillborn and make asignificant demonstrable difference.Sign up to the Prevention Agenda today and help to savelives.
  7. 7. NMSF Prevention AgendaTen 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.References1. Confidential Enquiry into Maternal and Child Health: Perinatal Mortality 2008:England, Wales and Northern Ireland. Edited by London, Centre for Enquiries intoMaternal and Child Health, 2010, p.2. Sands Why17? Campaign Confidential Enquiry Into Intrapartum Related Deaths, West Midlands PerinatalInstitute, October 2010 (Professor Jason Gardosi, MD FRCOG FRCSED) University of Manchester, School of Medicine, Dr Alexander Heazell (PhD MRCOG) Smartphone-Based Fetal Monitors Could Save Lives in Remote Areas NMSF report, Who Cares When You Lose a Baby? New Audit Tool Launched To Help Maternity Units Improve Bereavement Care For
  8. 8. NMSF Prevention AgendaParents Whose Baby Has Died Gardosi J, Kady SM, McGeown P, Francis A, Tonks A: Classification of stillbirth byrelevant condition at death (ReCoDe): population based cohort study, BMJ 2005,331:1113-11179. Royal College of Obstetricians and Gynaecologists: Green-Top Guideline 31 - TheInvestigation and Management of the small-for-gestational-age fetus. Edited byLondon, Royal College of Obstetricians and Gynaecologists, 2002, p.10. Confidential Enquiry into Stillbirths and Deaths in Infancy: 8th Annual ReportEdited by London, Maternal and Child Health Research Consortium, 2001, p.11. Heinonen S, Kirkinen P: Pregnancy outcome after previous stillbirth resultingfrom causes other than maternal conditions and fetal abnormalities, Birth 2000,27:33-3712. Reddy UM: Prediction and prevention of recurrent stillbirth, Obstet Gynecol 2007,110:1151-116413. Faye-Petersen OM, Guinn DA, Wenstrom KD: Value of perinatal autopsy, ObstetGynecol 1999, 94:915-92014. Kock KF, Vestergaard V, Hardt-Madsen M, Garne E: Declining autopsy rates instillbirths and infant deaths: results from Funen County, Denmark, 1986-96, J MaternFetal Neonatal Med 2003, 13:403-40715. Cartlidge PH, Dawson AT, Stewart JH, Vujanic GM: Value and quality of perinataland infant postmortem examinations: cohort analysis of 400 consecutive deaths, Bmj1995, 310:155-15816. Gold KJ, Sen A, Hayward RA: Marriage and cohabitation outcomes afterpregnancy loss, Pediatrics 2010, 125:e1202-120717. Surkan PJ, Radestad I, Cnattingius S, Steineck G, Dickman PW: Events afterstillbirth in relation to maternal depressive symptoms: a brief report, Birth 2008,35:153-157Contact National Maternity Support Foundation (NMSF)To sign up to the Prevention Agenda or if you have any comments and would like moreinformation please contact:Andrew Canter, Chairman, NMSFMobile: +44(0)7855 447 157 or Email: andrew@jakescharity.orgPlease see our website www.jakescharity.orgFollow us on Twitter:!/NMSFisforjakeFind us on Facebook: www.justgiving/nmsf/donate NMSF is Jake’s Charity Charity Registration Number 1118833 In partnership with