Training Pack Updated October 2018

Purpose, Objectives and Outcomes The PURPOSE of this document is to provide healthcare professionals with a basic understanding of and training in the implementation of the NBCP in their Trusts, either through self-learning or facilitated training by a lead professional The OBJECTIVE of this pack is to enable healthcare professionals to use and deliver the pathway effectively to families bereaved by pregnancy or baby loss The OUTCOMES of this training pack will be: Increased awareness of the need for high quality bereavement care Increased confidence in delivering bereavement care Increased knowledge and skills in implementing the pathway consistently

Contents Purpose, objectives and outcomes of this document Voice of the parent Standards in bereavement care NBCP background Working together Pilot sites Scenarios Further resources

Why do we need this pathway? I felt like a burden on staff- they made me feel they were there to help live babies (mother) The doctor and midwife had tears in their eyes. The doctor was more practical. They all cared that my heart was broken (mother) The doctor was just so horrible to me at the scan … There was another doctor and another doctor after that. I completely freaked out (mother) The midwife was an angel – so young though (mother) She was asked if she would like to see the baby, it was then brought in on couple of sanitary towels in a bowl, usually used to poo in. A photo was taken and she was then warned the photo would be sent in 3 months’ time in a brown envelope (father) The post mortem (consent) was with the consultant. I’d had a miscarriage the year before … She was upset. She was really, really good with the results, she had remembered. You could tell she cared (mother) Parents first. Bereaved parents are at the heart of the NBCP. We are all here, one might reasonably assume, to improve outcomes for mums and families. These are some of the quotes from our workshops earlier in the year. They highlight the variability of bereavement care across the country. There are pockets of good practice but there are parents with very poor experiences too. This ‘postcode lottery’ is not just geographical – it can of course occur in same unit Bereavement journey touches many – sonographer, midwife, obstetrician, pathologist, coroner This all needs to feel joined up for parent to have the experience they need

Bereavement Care Standards to be adopted from October 2018 Care should be individualised so that it is parent-led and caters for personal, cultural or religious needs. Clear communication with parents is key, and should be sensitive, honest and tailored to meet their individual needs. In any situation where there is a choice to be made, parents should be listened to and given the time, information and support they need to make their own decisions about what happens to them and to their baby. Assumptions should not be made about the intensity and duration of grief that a parent will experience, if they experience it. It is important that staff acknowledge and assess the feelings that individual parents experience, making referrals to further support as appropriate. A partner’s grief can be as profound as that of the mother; their needs for support should be recognised and met.

Bereavement Care Standards to be adopted from October 2018 Women and their partners should always have their care led and coordinated by staff who are specifically trained in bereavement care and in an environment that the parent feels is appropriate to their circumstances. All staff who care for bereaved parents before, during or after the death of their baby should have opportunities to develop and update their knowledge and skills, and should have access to good support for themselves. All parents whose babies die should be offered opportunities to create memories. Their individual wishes and needs should be respected. The bodies of babies and pregnancy remains should be treated with respect at all times. Options around sensitive treatment of the body or remains should be discussed and options available locally for funerals explained. Good communication between health and social care teams is crucial to ensure that all professionals are aware of parents’ preferences and decisions and so that parents do not need to repeatedly explain their situation. Collaboration and coordination are key.

How did the pathway come about? Background: The care that parents receive following a miscarriage, or the death of a baby in or out of hospital can vary significantly regionally, between local hospitals and even within the same unit. We know this directly from parents as well as from the MBRRACE-UK confidential enquiries. Follow-up in the community when families go home following a miscarriage or baby death can be equally variable and inadequate. Issues around care can also arise for parents whose baby dies in the community where a coroner or the police become involved. These inconsistencies can lead to distress for parents and families, impacting their emotional and physical well-being, having an adverse effect on future pregnancies, for example, and stretching limited NHS resources. MBRRACE-UK, confidential enquiries into antepartum, singleton, stillbirths at term

What do we hope to achieve? Aim: the aim of the National Bereavement Care Pathway is to overcome inequalities in the provision and experience of bereavement care in England, to ensure that all bereaved parents are offered high quality, individualised, safe and sensitive care. The NBCP project will provide evidence-based, best practice guidance around the non-clinical aspects of bereavement care for professionals working alongside parents and families experiencing the loss of a baby at any stage, from miscarriage to the death of a child up to 12 months. The pathway encompasses miscarriage*, TOPFA, stillbirth, neonatal death and SIDS. *includes ectopic and molar

vision VISION OBJECTIVE OUTPUTS OUTCOMES PRINCIPLES To overcome inequity in, and increase quality of, bereavement care vision VISION To ensure that all bereaved parents are offered equal, high quality, individualised, safe and sensitive care OBJECTIVE 1 Pathway & Guidance 2 Training 3 Evaluation 4 Influence and engagement OUTPUTS 1 (Parents): increased choice and Improved experience 2 (Professionals): Increased confidence; pathway embedded in practice 3 (Decision makers): Improved service delivery, OUTCOMES PARENT- CENTRED ENABLES PARENT CHOICE EVIDENCE - BASED HIGH QUALITY EMPOWERS PROFESSIONALS PRINCIPLES

What is baby loss? Range of baby loss Types of loss The loss of any baby, from early miscarriage through to 12 months of age Types of loss Miscarriage (both first and second trimester) Ectopic and molar pregnancy Terminations for fetal abnormalities (‘medical diagnosis’) Stillbirth Neonatal death Sudden and unexpected infant deaths (up to one year) Baby loss has decreased significantly (in the case of these last three types of loss) in the past 100 years, but progress has slowed in the past two decades

Key facts: baby loss in the UK (2015) 3,213 Terminations for fetal abnormalities in England and Wales 1 in 4 Pregnancies in the UK thought to end in miscarriage Over 20,000 families impacted by baby loss every year* 12,000 Ectopic pregnancies a year, approximately 3,434 Stillbirths Warning – tell the audience that these figures may be upsetting. They are significant. As professionals the likelihood is that we are dealing with families who have been affected by baby loss regularly. Cumulative figures - Remember as well that these are figures for only one year. So in any given year, of the 700,000 plus live births, a significant number of those families will have already suffered the loss of a baby. Multiple loss - Also consider that some families will have suffered more than one loss. Where there are explanations for a baby’s death, these can be factors that remain in future pregnancies in some cases, and may lead to multiple losses within one family. Wider impact - The individual figures relate to the number of babies, and we need to be aware that the number of individuals affected will be far greater. One stillbirth can impact on many family members, including aunts, uncles, grandparents and siblings, as well as a range of professionals. Our response to baby loss can have many ripples through the wider community. Note this training does not cover specifics about any of these types of deaths, and there are organisations who specialise in each of these areas who can offer this. References for statistics: Miscarriage – Miscarriage Association on estimates – acknowledge not possible to get exact numbers Stillbirths – SANDS Deaths in first month of life – Office for National Statistics: death registrations summary data 2015. Available from: https://www.ons.gov.uk/file?uri=/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/datasets/deathregistrationssummarytablesenglandandwalesreferencetables/2015/deathsfirstrelease2015.xls Terminations - Department of Health (2015) Abortion Statistics for England and Wales 2015, available at: https://www.gov.uk/government/statistics/report-on-abortion-statistics-in-england-and-wales-for-2015 Ectopic pregnancies - NHS Choices (2016) Ectopic Pregnancy [webpage], available at http://www.nhs.uk/conditions/ectopic-pregnancy/Pages/Introduction.aspx Unexplained infant deaths – Office for National Statistics, Sudden Unexpected Deaths in Infancy statistics: https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/bulletins/unexplaineddeathsininfancyenglandandwales/2015 2,117 Deaths in the first 4 weeks of life 214 Unexplained infant deaths up to 12 months (SIDS) *does not include miscarriages as there is no verifiable figure: best ‘guesstimates’ suggest around 250,000 miscarriages per year in the UK

The impact of the death of a baby “The death of a baby is one of the most devastating experiences any parent will face, and many families will struggle” All Party Parliamentary Group on Baby Loss, Tackling Baby Loss in the UK, 2016 The impact is lifelong Most families will go on to think about having another baby Some baby loss is more likely in areas with the highest levels of social deprivation – there are knock-on effects Good support at the time of the baby’s death can have a significant impact on how a family copes with that death both then and in the future is available at the right time after the death of a baby.................................................. Lifelong impact – noting that the impact of the death of a baby carries on for the life f that family, and sometimes for several generations afterwards. As professionals, our involvement in this long process is relatively small, but hugely significant. Subsequent babies – most families will, we know, go on to try and have another baby. The support, information and care following the death of a baby impacts on this. Social deprivation – we know that for some types of death, there are increases risks in areas with the highest levels of social deprivation – up to 50% more likely for a pregnancy to end in stillbirth or neonatal death compared to … the least deprived areas (MMBRACE-UK (May 2016:iv) MBRRACE-UK Perinatal Mortality Surveillance Report: UK Perinatal Deaths for Births from January to December 2014, available at https://www.npeu.ox.ac.uk/mbrrace-uk/reports). Highlight that this does not cover all baby loss, but we need to be aware that in many families there are other issues that will impact on the family’s ability to cope with the loss of a baby Good support – good support from professionals at the time of the baby’s death will have a significant impact – the purpose of the NBCP

Unique Nature Of Childbearing Loss There may be little or no tangible evidence of the baby’s life There are few, if any, shared memories which can lead to a sense of isolation The process of becoming parents to a new baby, which starts during pregnancy, is de-railed Parents can only mourn what might have been… the loss of the ‘dreamed of’ future the potential loss of self esteem and self image

Developing the pathway: Parent feedback: February 2017 The NBCP Project team ran workshops in the early part of 2017 for parents who had experienced pregnancy or baby loss. To discuss in your groups: what do you think were the three key messages parents gave us to the questions we asked of them: ‘what was good about your bereavement care?’ and ‘what would you like to see improved?’

Developing the pathway: Parent feedback: February 2017 The NBCP Project team ran workshops in the early part of 2017 for parents who had experienced pregnancy or baby loss. To discuss in your groups: what do you think were the three key messages parents gave us to the questions we asked of them: ‘what was good about your bereavement care?’ and ‘what would you like to see improved?’ Three over-arching messages came through: Communication is key There should be continuity and consistency in care Parent-led family involvement is vital

Developing the pathway: guidance materials and short-form documents available from www.nbcpathway.org.uk

Developing the pathway: guidance materials There are two documents for each of the five pregnancy and baby loss experiences. The first is a full guidance pack, the second is a short-form, ‘hands on’ document with additional flowcharts, appendices and pro formas also available for download These have been formed from best practice across England, based on 28 pathways which were submitted during our call for evidence in February 2017. These were then tested by the 11 Wave 1 and 21 Wave 2 pilot sites, with feedback to the project team and evaluator leading to further iterations ahead of this version in October 2018

Developing the pathway: guidance materials

www.nbcpathway.org.uk The nbcpathway.org.uk website went live in October 2017. The website contains basic information about the NBCP, guidance notes and other resources. Originally restricted to the pilot sites with a username and password, from October 2018 these were made available to all. In later phases we will aim to ensure the webpage has greater navigation, much more information, and in particular, a section for parents and families. Familiarise yourself with the website Download the relevant documents and read these Share with your colleagues For further information about the charities and organisations involved in the NBCP hover on the relevant logo.

Parent voice: video clips Hover over the logo in SlideShow mode to access the clips Six scenarios: The ambulance call-out, In A&E, The GP surgery, At the booking-in scan, Talking about management of miscarriage Talking about the sensitive disposal of pregnancy remains Web page dedicated to communication around bereavement Film footage that came from the Neonatal Butterfly project- research on twin loss. (may require log in)  

Parent voice: video clips Hover over the logo to access the clips Bereavement Care: The basics Together for Short Lives: You Tube clip – “We’re having a baby” “Callie’s Daddy” – a Dad’s blog http://stillbirthstories.org

Scenario 1: emergency A&E www.nbcpathway.org.uk Scenario 1: emergency A&E To work through in small groups: An apparently healthy 3 month old baby is brought into A&E by paramedics having been found unresponsive by parents in the morning. Resuscitation has not been successful.   What happens next? Are you aware of local protocols, and who is leading the process? What support can you offer the family? How can the pathway support professionals in this circumstance?

www.nbcpathway.org.uk Scenario 2: Neonatal To work through in small groups: A six day old baby has died whilst you are on shift at NICU. The mother has severe mental health difficulties and her partner’s first language is not English What local processes are in place to support the woman and her family? What actions do you need to take? How can the pathway guidance help in this regard?

Scenario 3: supporting you to support others www.nbcpathway.org.uk Scenario 3: supporting you to support others To work through in small groups: A baby has been stillborn during your shift: How has this affected you and your team? What support do you feel you need? How does this affect you outside of the workplace? How can the pathway guidance help you and your colleagues?

www.nbcpathway.org.uk Recap and review Further resources

' bereaved parents never forget the understanding, respect and genuine warmth they received from caregivers, which can become as lasting and important as any other memories of their lost pregnancy or their baby's short life’ Thank you Local Bereavement Lead: Project Lead: marc.harder@sands.org.uk Blog and information: www.nbcpathway.org.uk Twitter: #nbcp, #babyloss, @Sandsuk and others