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DEBATE PACK

Number CDP 2019-0222 , 7 October 2019

Baby Loss Awareness Week 2019

By Sarah Barber Thomas Powell, Rachel Harker, Catherine Fairbairn, Daniel Ferguson, Alex Adcock

Summary This pack has been prepared ahead of the general debate to be held in the Commons Chamber on Tuesday 8 October 2019.

Contents 1. Baby Loss Awareness

Week 2

2. Stillbirth and neonatal deaths in the UK 4

2.1 Surveillance and statistics 5 Each Baby Counts 7

2.2 Government policy and programmes 8 National Maternity Review 8 Government target to reduce stillbirths, neonatal and maternal deaths 8

2.3 National Bereavement Care Pathway 12

2.4 Parental Bereavement (Leave and Pay) Act 2018 12

2.5 The investigation of stillbirth 13

2.6 Scotland 13 2.7 Wales 14 2.8 Northern Ireland 14

3. Press articles 15

4. Press releases 16

5. Parliamentary coverage 36

5.1 Statements 36 5.2 Debates 39 5.3 PQs 39 5.4 Other Parliamentary

material 49

6. Further reading 50

The House of Commons Library prepares a briefing in hard copy and/or online for most non-legislative debates in the Chamber and Westminster Hall other than half-hour debates. Debate Packs are produced quickly after the announcement of parliamentary business. They are intended to provide a summary or overview of the issue being debated and identify relevant briefings and useful documents, including press and parliamentary material. More detailed briefing can be prepared for Members on request to the Library.

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1. Baby Loss Awareness Week A general debate on Baby Loss Awareness Week will take place in the Commons Chamber on 8 October 2019.

Baby Loss Awareness Week 2019 is on 9-15 October. This is an opportunity for those affected by baby loss to remember and commemorate their babies’ lives, and to raise awareness of this issue. The Baby Loss Awareness Week website provides more information about the aims of the week:

Baby Loss Awareness Week is an opportunity:

• for bereaved parents, and their families and friends, to unite with others across the world to commemorate their babies’ lives.

• to raise awareness about the issues surrounding pregnancy and baby loss in the UK, and push for tangible improvements in bereavement care and support.

• to let the public and key stakeholders know what charities and other supportive organisations are doing on bereavement care and support around pregnancy and baby loss.

The charities leading Baby Loss Awareness Week are committed to raising awareness of pregnancy and baby loss, providing support to anyone affected by pregnancy loss and the death of a baby, working with health professionals and services to improve bereavement care, and reducing preventable deaths.1

Baby Loss Awareness week is coordinated and supported by over 60 UK charities including the stillbirth and neonatal death charity, Sands, the Miscarriage Association and Antenatal Results and Choices (ARC). In Baby Loss Awareness Week 2019, there is a focus on mental health support; charities are calling on Governments to ensure that anyone who need psychological support after pregnancy or baby loss can access this:

This year we will be calling on Governments across the UK to take action to ensure that all parents who experience pregnancy and baby loss and need specialist psychological support can access it.

Too often people who experience a psychiatric illness after their loss do not receive the support they need. Join us in making sure that this crucial support is available at the right time and place, free of charge, for everyone who needs it, wherever they live in the UK. 2

The term baby loss can describe a number of different types of bereavement including miscarriage, ectopic pregnancy, stillbirth, neonatal and infant death, and termination of pregnancy. It is not possible to provide a comprehensive briefing on these in this debate pack. However, this briefing will highlight key recent policy announcements and parliamentary activity in this area.

1 Baby Loss Awareness Week website 2 Baby Loss Awareness Week, Policy ask 2019 [accessed 4 October 2019]

Baby Loss Awareness Week 2019 3

A number of Commons Library and POST publications may provide useful information in preparation for the debate on Baby Loss Awareness Week:

• Commons Library briefing paper, The investigation of stillbirth, March 2019

• Commons Library briefing paper, Registration of stillbirth, August 2019

• Commons Library briefing paper, Infant cremation, October 2018 • POSTnote, Infant Mortality and Stillbirth in the UK, May 2016 • POST Briefing, Bereavement Care after the Loss of a Baby in the

UK, July 2016

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2. Stillbirth and neonatal deaths in the UK

The most recent review of stillbirths and neonatal deaths in the UK reports that out of 780,043 births in 2016, 3,065 of these were stillbirth and 1,377 were neonatal deaths. The stillbirth rate for the UK in 2016 was at 3.93 per 1,000 total births and the neonatal death rate was 1.72 per 1,000 live births.3 Whilst noting a reduction in stillbirths since 2013, the report highlighted that UK stillbirth rates still remain high compared with similar European countries.

A 2016 article in the Lancet journal (part of a series on stillbirth), Stillbirths: recall to action in high-income countries, noted that inequality exists both between, and within, high income countries in stillbirth rates.4 The authors state that “if all high-income countries achieved stillbirth rates equal to the best performing countries, 19,439 late gestation (28 weeks or more) stillbirths could have been avoided in 2015.” The UK was ranked 24th of 49 high income countries in the Lancet study.

Whilst perinatal mortality has decreased in the last few decades, there are concerns that the rate of this decrease has slowed over recent years. Another concern is that whilst numbers overall are improving, there remains a geographical and socio-economic inequality in rates. In 2016, NHS England reported that there was around a 25% variation in stillbirth rates just across England.5 ONS figures for 2017 indicate that this geographical inequality persists. In addition, the 2017 stillbirth rate for the 10% most deprived areas of England was almost twice as high as in the 10% least deprived areas (5.5 stillbirths per 1,000 births in most deprived decile compared with 3.0 in the least deprived).6

Another 2016 Stillbirth series study looked at the consequences of stillbirth. It reported that parents, family, health services, society and Government may all be affected by wide ranging and substantial impacts. 7 These included “medical care and investigations at the time of stillbirth and in subsequent pregnancies; funeral costs; grief and negative psychological effects; reduced social functioning; family and relationship disruption and breakdown; and negative effects on employment.” These impacts are often enduring and long lasting.

The UK Government has taken recent action to address maternity care and stillbirth and neonatal death rates. A number of programmes have stemmed from an announcement made by the then Secretary of State for Health, Jeremy Hunt in November 2015 - a national ambition to 3 MBRRACE-UK, Perinatal Mortality Surveillance Report – UK Perinatal Deaths for

Births from January to December 2016, June 2018 4 Stillbirths: recall to action in high-income countries, Flenady, Vicki et al. The Lancet,

Volume 387 , Issue 10019 , 691 - 702 5 NHS England, NHS England announces new action to cut stillbirths, March 2016 6 ONS Child mortality data 2017 7 Stillbirths: economic and psychosocial consequences, Heazell, Alexander E P et al.

The Lancet , Volume 387 , Issue 10018 , 604 - 616

Baby Loss Awareness Week 2019 5

halve the rates of stillbirths, neonatal and maternal deaths in England by 2030.8

In November 2017, the Department of Health published Safer Maternity Care: The National Maternity Safety Strategy which set out some additional measures to prevent serious incidents in maternity services, and updated its ambitions, including bringing the target date forward from 2030 to 2025.

The NHS Long Term Plan (January 2019) sets out a range of measures related to the improvement of maternity and neonatal services.9 These included a commitment to accelerate action to achieve 50% reductions in stillbirth, maternal mortality, neonatal mortality and serious brain injury by 2025.

Medical professional organisations, such as the Royal College of Obstetricians and Gynaecologists, and charities such as Sands also play an important role in developing programmes and reviewing and improving the care provided to both expectant and bereaved parents.

2.1 Surveillance and statistics The MBRRACE- UK team at the National Perinatal Epidemiology Unit (NPEU) conducts UK wide surveillance of perinatal mortality, which includes all stillbirth and neonatal deaths, and maternal deaths.

As part of this programme, MBRRACE-UK publishes an annual perinatal mortality surveillance report, which identifies risk factors, causes and trends, and makes recommendations on how stillbirth and neonatal mortality rates can be reduced.

The most recent report was published in June 2018 and provides information about rates of stillbirth and neonatal deaths in 2016, including comparing rates between different organisations delivering healthcare across the UK. The perinatal mortality surveillance findings for 2017 will be launched on 15 October 2019.10

The 2018 report notes that there was little change in the rate of extended perinatal mortality in the UK in 2016: 5.64 per 1,000 total births for babies born at 24 weeks gestational age or later compared with 5.61 in 2015. However, this does represent an overall fall from 6.04 deaths per 1,000 total births in 2013.

The stillbirth rate for the UK in 2016 also remained fairly static at 3.93 per 1,000 total births. This follows a period of year on year reduction from 2013 to 2015: from 4.20 to 3.87 stillbirths per 1,000 total births.

Over the same period, the rate of neonatal mortality in the UK has shown a slow but steady decline: from 1.84 deaths per 1,000 live births in 2013 to 1.75 per 1,000 in 2016.

8 Department of Health, New ambition to halve rate of stillbirths and infant deaths,

November 2015 9 NHS Long Term Plan (7 January 2019) paragraph 3.9 to 3.21 10 NPEU, MBRRACE-UK Perinatal Mortality Surveillance Launch Meeting 2019, 3

October 2019

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The key findings of this report are summarised below in the infographic reproduced from the report.

Figure 1: MBRRACE, Perinatal Mortality Infographic, June 2018

Baby Loss Awareness Week 2019 7

Each Baby Counts The Royal College of Obstetricians and Gynaecologists’ (RCOG), Each Baby Counts initiative is a national quality improvement programme launched in October 2014. The investigation team conducts a detailed analysis of all stillbirths, neonatal deaths and brain injuries that occurred during childbirth.

A 2018 progress report (based on 2016 data) concluded that the number of incidents where different care could have led to a different outcome remained too high, with 71% of babies who might have had a different outcome with different care. The RCOG provide an overview of the findings within the report:

• Key findings: Of the nearly 700,000 babies born in 2016, 1,123 babies fulfilled the Each Baby Counts criteria. There were 124 stillbirths, 145 babies who died early and 854 babies who sustained severe brain injuries during labour at term (babies born after 37 completed weeks of gestation).

• Improved reporting: The quality of reporting improved by 14% from 2015, with more reports containing sufficient information for review.

• Care outcomes: The number of incidents where different care might have led to a different outcome still remains too high, with 71% babies who might have had a different outcome with different care.

• Interdependency of factors: For the babies reported to Each Baby Counts, the reviewers concluded that there was rarely one single cause of the stillbirth, early neonatal death or brain injury. The report identified an average of seven critical contributory factors for each baby where different care might have had made a difference to the outcome.

• Family involvement: There was also an increase in the number of parents who were invited to take part in reviews in 2016 – up to 41% from 34% in 2015. But in almost a quarter of instances parents were not involved, or even made aware, of reviews taking place.11

The report made a number of recommendations for clinical care, which focused on guidelines and anaesthetic care. These included that there must be a clear escalation policy in place and that staff should feel empowered to escalate where there are difficulties in workload, that there should be communication between the different teams providing women with care, and that there should be a clear policy that local guidelines are updated in line with national guidance.12

11 RCOG, Each Baby Counts: 2018 progress report, November 2018 12 RCOG, Each Baby Counts: 2018 progress report, November 2018

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2.2 Government policy and programmes National Maternity Review In March 2015, Simon Stevens, Chief Executive of NHS England, announced an independent review of maternity services as part of the NHS Five Year Forward View.

In February 2016, the report of the National Maternity Review, ‘Better Births’, was published. The review found that whilst there had been significant improvements in maternity care over the last decade, geographical variations remained and there were opportunities to improve services further. The report highlighted seven key improvements for maternity care. These included that women should be able to have care focused on their personal needs and choices, that women should have a named midwife, who is known to them and based in the community, and that there should be improvements in the provision of perinatal and postnatal mental healthcare.13

The Maternity Transformation Programme Board is leading the implementation of the Maternity Review, including work to reduce the rate of stillbirths, neonatal and maternal deaths in England.

Government target to reduce stillbirths, neonatal and maternal deaths On 13 November 2015, the then Health Secretary, Jeremy Hunt, announced a new Government ambition to “reduce the rate of stillbirths, neonatal and maternal deaths in England by 50% by 2030.” He further promised that the Government would target the number of brain injuries occurring during or soon after birth.14

In doing so, maternity services were tasked to develop “initiatives that can be more widely adopted across the country as part of a national approach”, such as appointing maternity safety champions to report at board level, or ensuring that all staff have the right training to be able to identify risks and symptoms associated with perinatal mental illness. Trusts were provided with a share of over £4 million of Government funding “to buy high-tech digital equipment and to provide training for staff already working to improve outcomes for mums and babies”.

Over £1 million was allocated to funding the rollout of training packages developed with the Royal College of Midwives and the Royal College of Obstetricians and Gynaecologists. In addition, £500,000 was allocated to “developing a new system for staff to review and learn from every stillbirth and neonatal death”.15

In October 2016, the Department of Health published Safer Maternity Care: Next steps towards the national maternity ambition, which was intended as guidance as to the actions required to be taken by trusts to “make improvements to the services they provide for women and their

13 NHS England, National Maternity Review, (accessed 4 October 2017) 14 “New ambition to halve rate of stillbirths and infant deaths”, Department of Health

press release, 13 November 2015 15 Ibid.

Baby Loss Awareness Week 2019 9

newborns”.16 It included a “Maternity Safety Training Fund” of £8 million, designed to support trusts in providing training, a share of which was available from October 2016 upon application to Health Education England .17 It also included a new £250,000 Maternity Safety Innovation Fund, available from the Department of Health, which invited open applications “for pioneering proposals for new ways to drive improvements in maternity safety”.18

The guidance stated that, in order to ensure that progress was being made, it expected to see a reduction of 20% in the rate of stillbirths, neonatal and maternal deaths by 2020.19

This plan also included an action for NHS England to publish a final Saving Babies’ Lives care bundle for use of maternity commissioners and providers. This is comprised of the following interventions:

• Reducing smoking in pregnancy • Risk assessment and surveillance for fetal growth restrictions • Raising awareness of reduced fetal movement; and • Effective fetal monitoring during labour.20

On 30 July 2018, NHS England claimed21 that an evaluation had demonstrated that an estimated 600 stillbirths could be prevented annually if maternity units adopted this care bundle.22

In November 2017, the Department of Health published Safer Maternity Care: The National Maternity Safety Strategy which set out some additional measures to prevent serious incidents in maternity services. It also brought forward the target date for halving of neonatal deaths, maternal deaths, injuries and stillbirths from 2030—the original planned date—to 2025:

Around 55,000 babies are born pre-term (i.e. 24 - 36 weeks gestation) each year. This represents a national pre-term birth rate of 7.9% in England and Wales. We need to focus efforts on reducing the pre-term birth rate if we are going to achieve the national Maternity Safety Ambition.

To encourage this additional focus, the Department of Health is setting an additional ambition to reduce the national rate of pre-term births from 8% to 6% by 2025.

We are currently on track to meet our ambition to reduce stillbirths, neonatal and maternal deaths by 20% by 2020. The range of additional funding and support should enable maternity and neonatal services to go farther and faster.

16 Department of Health, Safer Maternity Care: Next steps towards the national

maternity ambition, October 2016, p8 17 Ibid., p20 18 Ibid., p22 19 Ibid., p12 20 NHS England, Saving Babies’ Lives: A Care Bundle for Reducing Stillbirth, March

2016 21 “NHS action plan can prevent over 600 still births a year says NHS England”, NHS

England press release, 30 July 2018 22 Saving Babies’ Lives Project Impact and Results Evaluation (SPiRE), Evaluation of the

implementation of the Saving Babies’ Lives Care Bundle in early adopter NHS Trusts in England, July 2018

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We have, therefore, decided to re-set the national Maternity Safety Ambition to halve the rates of stillbirths, neonatal and maternal deaths and brain injuries occurring during or soon after birth to 2025.23

In January 2018, the then Health Minister Jackie Doyle-Price provided the following update on Government attempts to reduce stillbirths in answer to a PQ:

Since the Maternity Safety Action Plan was launched in 2016, more than 90% of trusts have appointed a named board-level maternity safety champion; 136 National Health Service trusts have received a share of an £8.1 million maternity safety training fund and, as of June 2017, more than 12,000 additional staff have received training. The maternal and neonatal health safety collaborative was launched on 28 February 2017 and 44 wave 1 trusts have attended intensive training on quality improvement science and are working on implementing local quality improvement projects with regular visits from a dedicated quality improvement manager; and 25 trusts were successful in their bids for a share of the £250,000 maternity safety innovation fund and have been progressing with their projects to drive improvements in safety.

The majority of maternity care providers are now implementing all four elements of the Saving Babies’ Lives Care Bundle, which recommends four key elements of evidence-based care and practice: reducing smoking in pregnancy, risk assessment and surveillance for fetal growth restriction, raising awareness of reduced fetal movement and effective fetal monitoring during labour. The Department has also funded the National Perinatal Epidemiology Unit at the University of Oxford to develop a national standardised Perinatal Mortality Review Tool to support local perinatal death reviews.

[…]

From April 2018, every case of a stillbirth, neonatal death, suspected brain injury or maternal death that is notified to the Royal College of Obstetricians and Gynaecologists’ (RCOG) ‘Each Baby Counts’ programme, about 1,000 incidents annually, will be investigated independently, with a thorough, learning-focused investigation conducted by the Healthcare Safety Investigation Branch. The new independent maternity safety investigations will involve families from the outset, and they will have an explicit remit not just to get to the bottom of what happened in an individual instance, but to spread knowledge around the system so that mistakes are not repeated.

In addition, the Department has provided funding for the RCOG to launch 'Each Baby Counts Learn and Support' - a programme of work to enable greater collaboration between the Royal Colleges and the NHS via the Maternal and Neonatal Health Safety Collaborative - the aim is to align quality and safety improvement, multi-professional learning and clinical leadership into a consistent and sustainable safety strategy across the system. The Department is also providing new funding to train health practitioners, such as maternity support workers, to deliver

23 Department of Health, Safer Maternity Care: The National Maternity Safety Strategy

– Progress and Next Steps, November 2017, p9

Baby Loss Awareness Week 2019 11

evidence-based smoking cessation according to appropriate national standards.24

In March 2018, Jeremy Hunt announced plans to roll out the ‘continuity of carer’ model, where women have a consistent midwife and/or obstetrician throughout the antenatal, intrapartum and postnatal periods, to all women by 2021. It is intended that 20% of women will be covered by the model by March 2019. In announcing this target, the then Secretary of State argued that:

Women who have continuity of carer are 19% less likely to miscarry, 16% less likely to lose their baby and 24% less likely to have a premature baby.25

The NHS Long Term Plan (January 2019) set out a range of measures related to the improvement of maternity and neonatal services.26 These included a commitment to accelerate action to achieve 50% reductions in stillbirth, maternal mortality, neonatal mortality and serious brain injury by 2025. Other key pledges include:

• An independent evaluation of the, The roll out of the Saving Babies’ Lives Care Bundle (SBLCB), with the aim to do this across every maternity unit in England in 2019.

• Measures to prevent pre-term births and the development of specialist pre-term birth clinics.

• Most women to receive continuity of the person caring for them during pregnancy, during birth and postnatally, by March 2021.

• Expanding neonatal critical care services and increasing the number of neonatal nurses, with expanded roles for some allied health professionals to support neonatal nurses.

The NHS Long Term Plan also committed to improving how the NHS learns lessons when things go wrong. In particular, it noted the role of the Healthcare Safety Investigation Branch in reviewing all term stillbirths, early neonatal deaths and cases of severe brain injury in babies, as well as all maternal deaths. The Plan also stated that “by spring 2019” every trust in England with a maternity and neonatal service would be part of the National Maternal and Neonatal Health Safety Collaborative.27

The stillbirth and neonatal death charity Sands welcomed the commitments set out in the Long Term Plan to improve the safety and quality of maternity and neonatal care. However, it said it remains to be seen how successfully the plan will be implemented, and noted that “clear funding commitments are absent from the Long Term Plan”.28

24 PQ 122321 [Perinatal Mortality], 17 January 2018 25 HC Written Statement: Improving Maternity Safety – Continuity of Carer and the

Midwifery Workforce, 27 March 2018 26 NHS Long Term Plan (7 January 2019) paragraph 3.9 to 3.21 27 Ibid. 28 Sands backs Government plan to halve stillbirths and neonatal deaths by 2025, 18

January 2019

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2.3 National Bereavement Care Pathway The National Bereavement Care Pathway is a project which was started in 2017 by an alliance of charities and professional bodies, with support from the All Party Parliamentary Group on Baby Loss, and with funding from the Department of Health & Social Care.29 Its objective is to create a care pathway for England which ensures

that all bereaved parents are offered equal, high quality, individualised, safe and sensitive care in any experience of pregnancy or baby loss, be that miscarriage, Termination of Pregnancy for Fetal Anomaly, Stillbirth, Neonatal death, or Sudden Unexpected Death in Infancy up to 12 months.30

To achieve this, it has undertaken pilots in 32 sites across England and developed pathway guidance for professionals, as well as a toolkit containing various training materials.31

In addition, in March 2017 NHS England produced guidance for Local Maternity Systems (LMSs) to implement the recommendations from the report, Better Births, which had been published a year earlier in February 2016 and which had been one result of the National Maternity Review.32 This guidance stipulates that LMSs should “pay particular attention to the provision of bereavement support to women and their families when a baby dies during pregnancy or whilst receiving specialist support through neonatal intensive care units”.33

In June 2017, NHS England published Gathering feedback from families following the death of their baby. This is a resource being used across England to improve bereavement care by supporting Local Maternity Systems to seek feedback from families when bereavement occurs and to use the insight to commission bereavement services that are fit for purpose.34

In February 2019 the Government stated that it has committed over £100,000 for Sands to continue the roll-out of the National Bereavement Care Pathway in 2018/19 to roll this out to NHS trusts and foundation trusts.35

2.4 Parental Bereavement (Leave and Pay) Act 2018

The Parental Bereavement (Leave and Pay) Act 2018 received Royal Assent on 13 September 2018. The Act will create a statutory entitlement to parental bereavement leave and pay by amending the

29 PQ 110207 [Bereavement Counselling], 2 November 2017 30 “National Bereavement Care Pathway”, Sands stillbirth & neonatal death charity

website. 31 Ibid. 32 National Maternity Review, Better Births: Improving outcomes of maternity services

in England, February 2016 33 NHS England, Implementing Better Births: A resource pack for Local Maternity

System, March 2017, p48 34 NHS England, Gathering feedback from families following the death of their baby: A

resource to support professionals in maternity care, June 2017 35 PQ 218352, Bereavement Counselling, 14 February 2019

Baby Loss Awareness Week 2019 13

Employment Rights Act 1996 and social security legislation. It will require implementing regulations. In the 2018 Budget, the Government committed to bring the Act into force in April 2020.36 Implementing regulations have yet to be laid before Parliament.

Once brought into force, bereaved parents will be entitled to at least two week’s leave, paid at the same flat rate used for other parental rights, such as maternity pay (currently £148.68 per week).

2.5 The investigation of stillbirth At present coroners do not have power to investigate stillbirths. On 26 March 2019, the Government published a consultation on introducing coronial investigation of stillbirths in England and Wales. The Government proposes that stillbirths that occur at or after the 37th week of pregnancy should be in scope of an inquest. Announcing the publication of the consultation, Edward Argar, who was then junior Justice Minister, said that the consultation was a joint undertaking between the Ministry of Justice and the Department of Health and Social Care and delivered the Government’s commitment, made in November 2017, to consider enabling coroners to investigate stillbirths. The Consultation closed on 18 June 2019 and the submissions are currently being analysed.37

In March 2019, the Civil Partnerships, Marriages and Deaths (Registration Etc.) Act 2019 received Royal Assent. Section 4 of this Act requires the Secretary of State to “make arrangements for the preparation of a report on whether, and if so how, the law ought to be changed to enable or require coroners to investigate stillbirths”. The Secretary of State must publish the report

More information on the investigation of stillbirth is provided in a March 2019 Commons Library briefing paper, The Investigation of Stillbirth.

2.6 Scotland A review of maternity and neonatal services in Scotland was announced on 25 February 2015. The review looked at the quality and safety of maternity and neonatal services, and choice within those services. The report of the review, The Best Start: A Five-Year Forward Plan for Maternity and Neonatal Care in Scotland, was published in January 2017. The key recommendations were:

Continuity of Carer: all women will have continuity of carer from a primary midwife, and midwives and obstetric teams will be aligned with a caseload of women and co-located for the provision of community and hospital based services.

Mother and baby at the centre of care: Maternity and Neonatal care should be co-designed with women and families from the outset, and put mother and baby together at the centre of service planning and delivery as one entity.

36 HM Treasury, Budget 2018, October 2018, HC 1629 at para. 5.40. 37 Ministry of Justice, Coronial investigations of stillbirths, 26 March 2019

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Multi-professional working: Improved and seamless multi-professional working.

Safe, high quality, accessible care, including local delivery of services, availability of choice, high quality postnatal care, colocation of specialist maternity and neonatal care, services for vulnerable women and perinatal mental health services.

Neonatal Services: proposes a move to a new model of neonatal intensive care services in Scotland in the short and long term.

Supporting the service changes: recommendations about transport services, remote and rural care, telehealth and telemedicine, workforce, education and training, quality improvement and data and IT.38

In a February 2017 statement to the Scottish Parliament, the Minister of Public health and Sport, Aileen Campbell, said that the Government were committed to implementing the recommendations, and that an implementation group was being established.

In February 2019 the Scottish Government announced it was investing £12 million to improve maternity and neonatal services.39

2.7 Wales In Wales, a National Stillbirth Working Group was set up within the 1000 Lives Plus programme of work in April 2012 and included representation of important stakeholders in maternity care. The National Assembly for Wales published an Inquiry into stillbirths in Wales in 2013, which identified a number of actions to improve the stillbirth rate in Wales.

In March 2017, the Safer Pregnancy Wales campaign was launched. It is an initiative developed by the Wales Maternity Network in collaboration with 1000 Lives Improvement.

In July 2019 the Welsh Government published Maternity care in Wales: a five year vision for the future (2019-24).

2.8 Northern Ireland In December 2013 a new Northern Ireland Maternal and Infant Loss (NIMI) steering group was established to focus on policy to reduce the number of stillbirths and neonatal deaths. Chaired by Northern Ireland’s Chief Medical Officer, Dr Michael McBride, the Northern Ireland group’s remit covers all infant deaths in Northern Ireland, from miscarriage to one year. The group consists of healthcare professionals, officials and charities. Further information on this is available on the Sands website.

The Department of Health launched a Maternity strategy, A strategy for maternity care in Northern Ireland 2012 - 2018 in 2012.

38 Scottish Government, The Best Start: A Five-Year Forward Plan for Maternity and

Neonatal Care in Scotland, 2017 39 Scottish Government, Improving maternity and neonatal care, 12 February 2019

Baby Loss Awareness Week 2019 15

3. Press articles Scientists to test antibiotic cure for recurring miscarriages in major new trial

The Telegraph, 13 September 2019

Black women almost twice as likely to suffer stillbirths, study shows

Independent, 3 July 2019

Diabetic women need more support after study into stillbirth risk, say experts

Independent, 30 July 2019

Expectant mothers to be given same midwife throughout pregnancy in £40million NHS promise

Telegraph, 6 May 2019

‘Secret smoker’ tests for all parents-to-be

Times, 31 Mar 2019

Coroners could get power to investigate late-term stillbirths

Guardian, 26 Mar 2019

Parents warned to stop sleeping on the sofa with their babies amid rise in infant deaths

Telegraph, 11 Mar 2019

Babies' ‘red books’ to be digitised in plan to make NHS ‘best place in the world to give birth’

Independent, 30 December 2018

Parents grieving their dead newborns let down by patchy NHS support, major review warns

Independent, 10 December 2018

Too many baby deaths avoidable, report into NHS finds

Guardian, 13 Nov 2018

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4. Press releases Miscarriage Association

Preparing for Baby Loss Awareness Week 2019 18th September 2019

With three weeks to go to Baby Loss Awareness Week (9 – 15 October), the Miscarriage Association and our supporters are working alongside around 60 other charities and groups to raise of key issues that affect people who have lost a baby, highlighting the need for tangible improvements in bereavement care, research and prevention.

This year, the campaign focus is on the lack of timely access to psychological therapies for people who need extra mental health support following pregnancy or baby loss. Over the next 12 months our organisations will be calling on governments at Westminster and the devolved nations to ensure that anyone who needs psychological therapy after pregnancy or baby loss, they can access it without unduly long waiting times, and on the NHS.

We are also asking people from around the UK to get involved and start conversations around baby loss, by wearing pin badges or Twibbons, asking if their local buildings and landmarks can be lit up in pink and blue and taking part in memorial walks, services and other Baby Loss Awareness Week events.

Once again, the week will culminate with the International Wave of Light, with candles being lit at 7pm on the 15th of October, to remember all those babies who have been lost during pregnancy, or during or soon after birth.

For more information about the week and the planned activities, see our the Baby Loss Awareness Week page on our website or our Facebook page.

Royal College of Obstetricians and Gynaecologists

Royal Colleges response to latest clinical findings from the NMPA 12 September 2019

• A large evaluation of NHS services that looked after over 700,000 women and 720,000 babies show improvements in care

• Findings also show where action is needed from services, commissioners and policy makers

• Royal Colleges commend progress, but highlight where services need to be made safer, more personalised and offer greater choice

The National Maternity and Perinatal Audit (NMPA) is a major analysis of NHS maternity and neonatal services in Britain. Launched in 2016, it

Baby Loss Awareness Week 2019 17

uses data collected by hospitals to evaluate a range of care processes and outcomes, and produces high-quality information about services.

The second clinical report, published today, continues to show considerable wide variation in care and outcomes for women and babies. Some of this variation is inevitable and may reflect meeting the local needs of women and babies or variable data quality, but all maternity services need to ensure that care being delivered is of the highest standard, concludes the report.

The findings present a national picture of maternity and perinatal services in 149 of 151 trusts and boards across England, Scotland and Wales that provided care to 717,529 women who gave birth to 728,620 babies born between April 2016 March 2017. Key findings include:

• Induction of labour rate increased slightly from 27.9% to 29.2%, while babies born small after 40 weeks decreased from 55.3% to 52.3% in England compared with 2015/16. This coincides with the introduction of the Saving Babies’ Lives Care Bundle that aims to reduce stillbirth.

• However, the number of small babies born after 40 weeks is still high, and the induction of labour rate varied from 16.1% to 43% among individual maternity units.

• Third and fourth degree perineal tears – a major complication of vaginal birth – were broadly similar between all countries, with an overall rate of 3.5% across Britain, but the reported rate varied widely among maternity services from 0.7% to 6.4%.

• Obstetric haemorrhage of 1500 ml or more – major bleeding after childbirth which remains an important cause of maternal morbidity and mortality – had a rate of 2.8% in England and 3.5% in Wales, with wide variation among maternity units with reported rates from 0.7% to 5.4%.

• Rates of an Apgar score of less than 7 at 5 minutes – a measure of the baby’s condition after birth – also varied from 0.4% to 3.6% among maternity services.

• For the first time, over half (50.4%) of women were recorded as overweight or obese at the time of booking – this is up from 47.3% in 2015/16.

• 22% of women were over the age of 35, and 4.1% were over the age of 40, at the time of giving birth, reflecting the ongoing rise in maternal age.

Substantial variation in the different types of birth exists and these measures should be considered together:

• The spontaneous vaginal birth rate among women having a single term baby was 61.9% in England, 57.1% in Scotland and 64.5% in Wales, with variation from 54.1% to 68.5% among maternity services.

• The rate of overall caesarean birth (including elective and emergency) was 25.5% in England, 30.5% in Scotland, 24.1% in Wales, with an overall rate of 25.8% across Britain, and a range of 19.2% to 32.8% among maternity services.

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• The rate of instrumental births (assistance of forceps or ventouse during a vaginal birth) was 12.6% in England, 12.3% in Scotland, 11.4% in Wales, with an overall rate of 12.5% across Britain, with variation from 6.8% to 18.4% among maternity services.

• The proportion of women who gave birth to a single baby at term, and who had a spontaneous onset of labour and a spontaneous vaginal birth without epidural, spinal/general anaesthesia or an episiotomy was 41.5% in England, 34.2% in Scotland and 41.1% in Wales. This ranged from 29% to 54% among maternity services.

New neonatal care measures being reported for the first time include:

• 5.8% of babies born between 37 and 42 weeks, and 41.9% of those born between 34 and 36 weeks were admitted to a neonatal unit.

• 5.8 in 1000 babies born between 37 and 42 weeks received mechanical ventilation in the first 3 days of life.

• 1.7 in 1000 babies born between 35 and 42 weeks developed an encephalopathy, a marker of potential brain injury, within the first 3 days of life.

The report makes a number of key recommendations to drive improvements for those providing, commissioning, funding and using maternity services.

Professor Lesley Regan, President of the Royal College of Obstetricians and Gynaecologists (RCOG), said:

“All women should expect to receive the best possible care during pregnancy and childbirth. National initiatives to improve maternal and neonatal care are making impressive headway to ensure services are as safe and personalised as possible for women, the vast majority of whom have a safe birth. “But we must not be complacent since this report highlights marked variation in standards of care persist, particularly around birth complications, such as severe perineal tearing and obstetric haemorrhage. These findings will enable maternity staff, healthcare commissioners, policy makers and women to evaluate maternity and perinatal care provided locally and nationally, and to make further improvements in the quality of services.” Professor Russell Viner, President of the Royal College of Paediatrics and Child Health (RCPCH), said: “For the first time, over half of women are being recorded as overweight or obese during pregnancy. Every parent wants to give their baby the best start in life, however this raises several red flags for both women’s and children’s health.

“For mothers, being overweight during pregnancy comes with significant risks including gestational diabetes, pre-eclampsia, miscarriage and postpartum haemorrhage. Meanwhile, babies born to

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overweight parents are much more likely to become overweight children and are more likely to suffer from life-long conditions such as type 2 diabetes.

“Women must be supported before conception, during pregnancy and after birth to ensure the healthiest possible outcome for both themselves and their child. With the right support, it is possible to stop this dangerous cycle from being repeated.”

Zeenath Uddin, Head of Quality and Safety at the Royal College of Midwives (RCM) said:

“The RCM is pleased to see that maternity services are making continuous and considerable efforts to improve and implement recommendations from recent reviews and initiatives.

“The results suggest that maternity and neonatal service provision is improving in a number of important areas as well as facing ongoing challenges, particularly around unwarranted variation.

“It’s disappointing that the data collected around smoking at time of birth and during pregnancy is inconsistent and this is concerning. We know smoking can increase the risk of miscarriage, placental abruption and eclampsia. A recent RCM survey revealed that almost 70 % of Heads of Midwifery reported they do not have a smoking cessation specialist midwife in their maternity team. Evidence show that stopping smoking early in pregnancy can almost entirely prevent adverse effects and we need to be doing all we can to support women and their families to stop smoking.

“Overall the audit findings present a valuable national snapshot of maternity and perinatal services and where there is unwanted variation is some areas, there are also areas where good practice has been identified and this is an opportunity for learning which will ultimately improve the care that women and their babies receive.” Dr Ipek Gurol-Urganci, Lead Methodologist of the NMPA Project Team and Assistant Professor at the London School of Hygiene and Tropical Medicine wrote:

“This second clinical report from the National Maternity and Perinatal Audit demonstrates the importance of having complete and accurate information about where and how women give birth. However, NHS providers of maternity services and national data providers need to further improve the data that they collect and the flow from local systems to central datasets because many maternity services are still excluded from one or more measures because of incomplete data.”

Mrs Emma Crookes, NMPA Women and Families Involvement Group and RCOG Women’s Network member, wrote: “The way the National Maternity and Perinatal Audit measures processes and outcomes of individual trusts and boards against their peers opens up local as well as national conversations between providers and service users. This means that open and honest

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conversations can take place to co-design services, co-produce care plans and co-create trusting and honest partnerships between healthcare professionals and service users. All maternity units should use the NMPA as a measuring tool in order to gain momentum and confidently move into more personalised and assured care for all women and their families.” RCOG/FSRH joint statement in response to the NHS England Long Term Plan 7 January 2019

The NHS Long Term Plan has been announced today to ensure that patients will be supported with world-class care at every stage of their life. The plans are backed by the funding increase of £20.5 billion every year by 2023/4 for the NHS in England.

Professor Mary-Ann Lumsden, Senior Vice President of the Royal College of Obstetricians and Gynaecologists (RCOG), said:

“We welcome the Government’s announcement of a Long Term Plan for the NHS and £20.5bn a year additional funding by 2023/4, which marks an important step forward in ensuring the sustainability of the NHS.

“It is fundamental that we have a laser-sharp focus on making sure that the workforce gets the support, skills and training it needs to deliver the highest quality care for patients. One of the major strengths of the NHS is its staff. We particularly welcome the focus on increased flexibility and the need to rebalance generalist and specialist skills so that we attract and retain a strong workforce.

“Together with key stakeholders, including other Royal Colleges and organisations that play a major part in workforce planning, we welcome the opportunity to contribute to a new workforce implementation plan by the spring to improve the effectiveness and sustainability of the workforce. This will build on activities which are already an integral part of the Maternity Transformation programme.

“The plan sets out an ambitious roadmap for supporting the NHS and ensuring that England is the safest place to have a baby. To support this aim, the RCOG is calling for a national maternity centre to be established, bringing together the shared expertise and experience of women and families, frontline maternity teams, academics and policymakers, aimed at reducing the number of stillbirth and pre-term births by 2025. "Also, since one in five women experience a mental health issue in the first year of her baby's life, these plans will include the development of maternity outreach clinics offering perinatal mental health support for new parents with children up to two years old

“The RCOG is particularly heartened to see the plan’s focus on addressing health inequalities, across all life stages, including a focus on ethnicity and deprivation in maternity services. It is unacceptable that

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34% of women living in deprived areas experience poor health, compared to 17% in other parts of the country.

“We strongly believe there also needs to be a targeted approach to improve the health of women. They represent 51% of the UK population and play an influential role in the nation’s health, yet they are disproportionately affected by inequalities in access to and quality of care. We believe it is crucial to develop a national women’s health strategy.

“Setting up Integrated Care Systems (ICS) everywhere and to include clinical leadership is a progressive way to ensure we address unmet needs within local health populations. We are calling for a specific and measurable goal around women’s health to be included as local plans are developed.”

Dr Asha Kasliwal, President of the Faculty of Sexual and Reproductive Healthcare (FSRH), said:

“FSRH welcomes the NHS long term plan. We are pleased to see a focus on prevention, inequalities and workforce development. FSRH looks forward to working with the NHS and Department of Health and Social Care to deliver on the plan.

"Prevention and health promotion should be the starting point of any effective long-term plan for the NHS. However, ongoing cuts to other parts of the system such as to Public Health will prove a major challenge for the NHS to fulfil its pledges. Despite not being included in the NHS funding settlement announced last year, Public Health must be significantly embedded in the delivery of the plan if prevention is truly to be at centre stage.

"Another starting point should be investment in the people who passionately and selflessly deliver the best care possible against daily pressures. We have consistently pointed out the crisis in the sexual and reproductive health care workforce, with vacancies left unfulfilled, senior professionals retiring without the system coping to fill these gaps, and a neglect in training.

"We welcome the pledges on a workforce implementation plan and a national workforce group and look forward to working with the NHS, NHS Improvement and Health Education England on these commitments.

"Finally, we echo RCOG’s call on a women’s health strategy and the development of specific goals on women’s health as Integrated Care Systems are rolled out across the country. These should be based on a life-course approach to women’s health, including pre- and post-pregnancy contraceptive care.”

Tommy’s

Tell me WHY - a Tommy's campaign 6 September 2019

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71% are not given a medical reason for their miscarriage, stillbirth or premature birth. Without this, parents, particularly women, blame themselves. We need more research to find out the reasons why.

Today Tommy’s is launching its TELL ME WHY campaign to call for more research into loss and complications in pregnancy. Although 1 in 4 pregnancies end in miscarriage, stillbirth or premature birth, the majority of parents never find out why it has happened. In most cases healthcare professionals simply do not know why a pregnancy loss or preterm birth has happened.

A survey of 1,081 women who have lost a child during pregnancy or had a premature birth found that 71% are not given a medical reason why it happened.

In the same survey:

• 82% of parents said they blamed themselves for something they had done

• 77% felt guilty for what had happened.

The survey, conducted by Tommy’s, coincides with the launch of TELL ME WHY, a campaign that calls for more funding for research into miscarriage, stillbirth and preterm birth.

Pregnancy loss, in contrast to most other medical conditions, suffers from widespread public opinion that a miscarriage or a stillbirth is ‘one of those things’ and that the baby ‘wasn’t meant to be’. This fatalistic attitude contributes to a failure to bring about change and improvements in reproductive health and pregnancy care.

As part of the campaign Tommy's has developed 3 animations to show how we are finding out why miscarriage, stillbirth and premature birth happen, and how pinpointing the reasons WHY can bring about improvements in care.

Tommy’s ambassador Ellie Robson-Grice, a 36-year-old Civil Servant who lives in Newcastle upon Tyne with her husband Michael and children Aidan (4) and Sam (7 months) features in the Tell Me Why campaign film says: “I was left feeling confused and frustrated by the lack of answers and blamed myself. I wondered if it was because I was unable to carry male pregnancies or even if it was because I went to a gig or bought a babygrow too early. Even after 12 losses the advice was just to keep trying. I’d lost all hope but felt so strongly that there had to be answers, I decided to participate in research. I wanted to help others and try to stop miscarriage from happening. This decision changed everything for us, we are now proud parents to two amazing rainbow children. Research is just so important.”

Tommy’s believes that parents deserve to be told why their baby has died or has been born prematurely. As well as ending the cycle of self-blame and guilt, this will improve understanding of the biological processes at work and tackle the common myth that baby loss or preterm birth is ‘just one of those things’ and, therefore, cannot be prevented.

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The only way to do this is to increase the amount of research happening in reproductive health to match other areas like heart disease and cancer. For example, Tommy’s National Centre for Miscarriage Research, which opened in 2016, currently carries out virtually all research trials for miscarriage in the UK.

Jane Brewin, Tommy’s Chief Executive, says: “When a baby dies during pregnancy or is born too soon, parents are often told that it’s ‘just one of those things’. Tommy’s believes that pregnancy complications and baby loss are neither inevitable nor acceptable. Our research proves that we can find answers and prevent babies from dying before, during and after birth. However, we need more funding for more research into reproductive health to tell all parents why it is happening and how we can prevent it happening again.”

Visit the campaign hub here.

For more information or press interviews please contact Hannah Blake on hblake@tommys.org or 07730 039361

Tommy’s opens National Centre for Maternity Improvement Tommy’s, The Royal College of Midwives (RCM) and the Royal College of Obstetricians and Gynaecologists (RCOG) have formed an alliance to launch The Tommy’s National Centre for Maternity Improvement, which will be established from 1 September 2019.

• The three-year programme of work - which will involve the creation of a digital tool to personalise and improve maternity care for women - is in support of achieving the government’s objectives to reduce stillbirth and preterm birth

• The Centre will be led by Professor Tim Draycott and will involve expert obstetricians, midwives, data analysists and behavioural scientists from leading UK universities and clinical centres

• The programme is a collaboration between Tommy’s, RCOG, RCM, the NHS, universities and crucially, women and their families

• This alliance represents an ongoing commitment to improving care across the maternity system to make the UK the safest place in the world to give birth

The Tommy’s National Centre for Maternity Improvement is an alliance between parents, midwives, doctors, the NHS and academic experts to drive improvement in the maternity service with the aim of preventing 600 stillbirths and 12,000 preterm births nationally. These reductions will support government targets to make the UK the safest place in the world to give birth by halving stillbirth rates and reducing preterm birth from 8% to 6% by 2025.

In the UK, nearly 60,000 babies are born prematurely every year (before 37 weeks)[i]. Some do not survive, and those that do can face a lifetime of health issues. And, tragically, 2,700 babies per year in the UK are stillborn.[ii] In terms of stillbirth, the UK is outside of the top 20 safest

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high-income countries in which to give birth. There is clearly room for improvement[iii].

The Tommy’s National Centre for Maternity Improvement will build on existing research and initiatives, and focus on personalised, patient-centred care, to create a model of care that can be scaled up nationally. This will help reduce current geographical and socio-demographic inequalities in the quality of care experienced between providers, with a focus on improving outcomes in the poorest performing 80% of UK regions to reach the level of the top 20%.

The Centre will also develop a digital tool, that will be freely available to every woman and their healthcare providers, in the UK. Women will input their own data and be signposted to advice related to their care or lifestyle choices that can improve their chance of a healthy baby. Medical professionals will also contribute clinical data to a woman’s record, and these combined data will be used to personalise risk and choices with signposting to advice and more options. This will be achieved through five workstreams:

1 Identification and implementation of interventions to mitigate and manage preterm birth

2 Identification and implementation of interventions to mitigate and manage stillbirth

3 Implementation and improvement science to inform development, implementation and evaluation of interventions to support practice change

4 Practical implementation of interventions identified

5 Data analysis for improvement

Professor Tim Draycott is the Clinical Director for The Tommy’s National Centre for Maternity Improvement and the team of midwives, clinicians, obstetricians, academics and experts. Tim is a senior practising clinician (North Bristol NHS Trust) and Improvement Scientist with world-leading experience of delivering improvements in maternity care. Tim will be supported by two Deputy Directors: Professor Jane Sandall, a midwife who will bring implementation science and collaborative cross-boundary leadership experience; and Professor Andrew Judge, a professor of translational statistics with expertise in medical statistics and in conducting epidemiological research using ‘big’ health registry data across multiple health conditions.

Multi-professional clinical leadership will be provided by consultant obstetricians Professor Basky Thilaganathan and Professor Dilly Anumba, midwife Cathy Winter, with support from clinicians and data scientists across the UK. Maria Viner, CEO of charity Mothers for Mothers and a member of the RCOG’s Women’s Network, will provide leadership and representation for the parents who will contribute to the centre’s work.

Jane Brewin, Chief Executive of Tommy’s said;

“Currently, almost all women are assigned to low risk care in their first pregnancy, and obstetric history is used as an indicator of risk. So, it feels like you must lose a baby before being referred to high risk care

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and being pregnant for the first time carries a greater risk than women who have had a previous healthy baby.

“By identifying women at risk, we can ensure they receive the correct care and treatment throughout their pregnancy to improve their chances of a successful pregnancy. Our aim is to improve care for everyone in the UK, empowering women and healthcare providers alike to do the right thing the easy way. It shouldn’t matter where you live or who you are, everyone should be entitled to the best care for themselves and their baby.”

Health Minister Nadine Dorries said;

“I want our NHS to be the safest place in the world to have a baby. By bringing together clinical expertise from across the country and delivering digital innovation to support our midwives and doctors we can support the NHS to deliver world-class care.

“This new centre will bring us another step closer towards achieving our ambitions set out in the NHS Long Term Plan – to halve stillbirths by 2025 and provide continuity of carer for mothers throughout pregnancy and postnatally.”

Professor Tim Draycott said;

“The Tommy’s National Centre for Maternity Improvement will harness digital technology, national data and behavioural insights to reduce preterm birth and stillbirth across the UK. We aim to reduce the current unequal provision of care that can be too little too late for some women, and too much too soon for others, by developing digital platforms and practice-based tools to personalise care with women. These tools will also enable maternity professionals to provide tailored and evidence based care with women.

“We are excited by the potential synergies offered by working directly with Tommy’s and the Maternity Voices Partnership, drawing on their expertise and resources to reach all women and their families who will benefit from our Centre’s work.”

Professor Lesley Regan, President of the Royal College of Obstetricians and Gynaecologists (RCOG), said;

“We recognise that there are no magic bullets in healthcare improvement but by harnessing data already collected by front-line maternity staff and using it to personalise care for women throughout their maternity journey, we are confident this innovative approach will lead to improvements and streamline the current care system to reduce preterm birth and stillbirth.

“What is unique about this Centre is that we are bringing together a multi-professional group of academics and clinicians who will be working with the RCM and RCOG, representing the entire UK maternity workforce. Together with a consortium of charities, a national Women’s voices partnership and a national network of partner NHS Trusts, we aim to leverage this crucial funding from Tommy’s to achieve our vision to make the UK the safest place in the world to give birth.”

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Gill Walton, Chief Executive of the Royal College of Midwives, said;

“This is an important and exciting initiative that will support efforts to reduce UK stillbirth rates. It will enable maternity services to identify women who may need additional support so that their care can be tailored appropriately. This project will make our maternity services safer and better. It is also important that the project has women as key partners in it. This means so that the initiatives coming out of this collaboration meet their needs.”

Commenting on the centre, Maria Viner, said;

“I am delighted to be representing parents’ voices as the centre evolves and the programme of work is implemented. It’s crucial to find out what women want from their care in order to prevent stillbirths and preterm births, whether that is through information from healthcare professionals or being empowered to make informed decisions about their care by improving communication. My role will be to ensure the views of women and their families are meaningfully embedded across all levels of project governance and implementation.”

Tamba, the twins and multiple births association Multiple births should be safer following updated NICE guidance

September 4th 2019

Tamba, the twins and multiple births association, welcomes the publication today (Wednesday September 4th) by NICE (National Institute of Clinical Excellence), of updated guidelines for multiple birth pregnancies.

Tamba contributed to the process and welcomes the updated version which the charity believes will result in better birth experiences for mums, and safer outcomes for babies.

Through its pioneering [1] Maternity Engagement Project, Tamba will seek to ensure staff at units across England are supported in adopting the updated guidelines by providing direct support and advice.

Recent research by the charity revealed that only 30% of maternity units were following the NICE guidelines on multiple births.

“There is overwhelming support from the Department of Health, NHS England, Care Quality Commission, Royal Colleges, NHS Improvement and fellow charities to drive this figure up,” says Keith Reed, Tamba CEO. “This is because there is really strong evidence to show, that following NICE guidelines for multiple births works.

“With partner organisations explicitly specifying care should be delivered in this way in NHS contracts, care bundles, inspection frameworks and providing money through the tariff, implementing this guidance is now effectively obligatory.

“This exceptional level of support is due to our Maternity Engagement Project which worked with 30 maternity units over three years and

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supported them in implementing the guidance. It resulted in fewer emergency c-sections, a drop in neonatal admissions and proved that it could reduce stillbirths.

“We were able to show that if all maternity units in England follow suit, neonatal admissions in multiples could be reduced by 1,308, emergency c-sections by 634, resulting in a saving for the NHS of £8 million. And after five years, across the UK there would be a reduction in stillbirths by 100.”

A key addition to the updated guidelines is a new section on intrapartum care (care which is given as soon as labour starts until the delivery of the placenta) and a new section on birth plans and timing of birth – an area of concern raised in the charity’s recent [2] BeCOME survey (full results of which will be published in February 2020).

Professor Asma Khalil, chair of the maternity engagement steering committee said: “It is also good to see all types of triplet pregnancy being recognised with two different appointment schedules and appointment schedules for monochorionic twins are now in line with the Royal College of Obstetricians and Gynaecologists Green Top guidelines and the International Society of Ultrasound in Obstetrics and Gynaecology guideline.”

There is also a new section on preventing preterm births; which doesn’t recommend any particular intervention but will be reviewed as new evidence relating to progesterone becomes available.

Paul Chrisp, director of the Centre for Guidelines at NICE, said: “Our updated guideline now includes a section on intrapartum care for women with multiple pregnancies. It provides clear advice on the care women with multiple pregnancies should receive from the onset of labour until delivery has taken place. This will not only improve outcomes for women and their babies but helps support the delivery of the NHS Long Term Plan.”

References:

[1] The world-first Maternity Engagement Project began in 2015 and working in 30 maternity units in England aimed to improve care for families of twins, triplets and more. The first three years of the project were funded by the Department of Health and saw fewer neonatal admissions and fewer emergency c-sections in just 12 months. Analysis showed that if all If all maternity units in England followed Tamba’s maternity engagement project and implemented similar changes, within a year

- neonatal admissions in multiples could be reduced by 1,308

- emergency c-sections could be reduced by 634

- NHS would save £8 million

Whilst funding of the project has ended, Tamba is now embarking on a new model to continue its pioneering work with units. Click here to read the full report on the project.

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[2] In March this year Tamba conducted a survey asking for parents’ views on their maternity care during and after a multiple pregnancy. This was to support important research the charity is conducting into how well mothers and babies are cared for in multiple birth pregnancies and also included a survey with healthcare professionals to get a fuller picture.

The Lullaby Trust

Rates of sudden infant death syndrome reach new record low but The Lullaby Trust says more needs to be done 19 Aug 2019

Rates of sudden infant death syndrome (SIDS) have shown a decrease in England and Wales according to figures released today by the Office for National Statistics (ONS).

The new figures show that the number of deaths dropped significantly from 226 (a rate of 0.32 deaths per 1,000 live births) in 2016 to 183 (a rate of 0.27 deaths per 1,000) in 2017. This is an improvement on 2016’s figures, which showed that the SIDS rate rose against the trend for the first time in 3 years.

The overall UK rate has also decreased by 18.8% since 2016 and 7.1% since 2015.

Prior to 2013, SIDS rates had not risen for a decade. Rates then dropped again, reaching record lows in 2014 and 2015. The rate of SIDS then rose by 12.5% in 2016 and the 2017 figures released today show SIDS rates have fallen by 3.6% since the previous record low in 2015.

However, The Lullaby Trust the UK’s leading SIDS charity has warned against complacency and urges further action to bring down the rate.

Jenny Ward, CEO of The Lullaby Trust says:

“Whilst it is extremely good news that SIDS has gone down in England and Wales, 183 babies’ lives lost is still too many. We’ve seen through the success of the Back to Sleep campaign that safer sleep saves babies’ lives, so it is vitally important that all parents have access to up-to-date advice. It is essential that all professionals who work with babies and new parents are aware of how to practise safer sleep and able to pass that advice on to parents. With a fall in the number of health visitors and early years services, we are concerned that not all families are receiving adequate support after the birth of their child. Without consistent access to safer sleep information for all families, increases in the number of deaths could occur. If all parents were made aware of how they can reduce the risk of SIDS, we would see a much more significant reduction in the number of babies dying. We strongly urge local authorities to make adequate funding for staff who provide crucial support and advice to new families a top-priority.”

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ONS attribute the decrease to a reduction in maternal smoking and increased awareness of safer sleep advice, referencing the NHS, Welsh Government and The Lullaby Trust. The report states:

“This overall decreasing trend in unexplained infant deaths could be driven by the advice and guidance that is available for parents from the NHS, Welsh Government, and charities such as The Lullaby Trust. For example, since 2015, The Lullaby Trust has held an annual awareness Safer Sleep Week Campaign promoting safer sleep advice, where a number of health authorities participated to raise public awareness. The Lullaby Trust has also trained health professionals working with new and expectant parents how to advise on safer sleep practices”

The ONS figures show that the rate of SIDS is highest in the North East with 0.40 deaths per 1,000 live births, 48% above the average rate in England and Wales.

Advice on safer sleep can be found here

To read the full report click here

You can help us reach more families with advice and support to reduce the risk of their baby dying.

Click here to donate today and help save more babies’ lives.

New partnership will save lives by supporting parents and health professionals to reduce the risk of SIDS 11 Mar 2019

This Safer Sleep week, The Lullaby Trust, Public Health England, Unicef UK Baby Friendly Initiative and Basis (Baby Sleep Info Source, Durham University) have collaborated to create a range of resources for parents and health professionals.

The resources will provide information and guidance for parents on reducing the risk of sudden infant death syndrome (SIDS), and support health professionals to have effective conversations about safer sleep. Families will be given the new safer sleep information and resources by health professionals, supported by all four organisations.

The guide focuses on providing information on the key actions parents can take to reduce the risk of SIDS such as sleeping baby on their back on a clear flat sleep space, avoiding exposure to tobacco smoke during pregnancy and after birth, and breastfeeding. We have also given information on bed sharing safety, as while cot safety was previously emphasised, we know that many parents bed share and wanted to give clearer information on doing so in a way that reduces risk.

A professional’s guide has also been produced by the partnership. It is a resource aimed at helping professionals to effectively convey safer sleep information to parents. The guide emphasises the vital importance of

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having open, non-judgemental conversations with parents about safer sleep, including bed sharing and provides suggestions for having those sometimes difficult discussions.

Jenny Ward CEO of The Lullaby Trust said:

“We are delighted to be working in partnership with Public Health England, Unicef UK Baby Friendly Initiative and Basis. Although the number of SIDS deaths has declined over the past 25 years, the recent rise in rates has demonstrated the importance of all parents having access to safer sleep information. Around 5 babies still die of SIDS every week in the UK. This partnership will save lives by ensuring more parents receive and understand information on how to reduce the risk of SIDS.”

Wendy Nicholson, National Lead Nurse, Children, Young People and Families, Public Health England, adds:

“We know that it may be difficult to have open conversations about the risks of bed sharing when talking to parents about safe sleeping. These important new resources will support health professionals’ conversations with parents who might share a bed with their baby, to help more families get the right advice on how to keep their baby safe. We would always encourage parents to talk to their midwife or health visitor for further advice.”

Sue Ashmore , Programme Director of Unicef UK Baby Friendly Initiative said:

“New mothers and families need clear, consistent information on safer sleep. The Baby Friendly Initiative is very pleased to support these resources and work with health professionals to effectively convey these messages to families.”

Professor Helen Ball, Director of Basis and the Durham Infancy & Sleep Centre said:

“Many new parents nowadays are unfamiliar with SIDS and the reasons for having infant sleep safety guidance. The aim of these new resources is to increase parental awareness and understanding.”

The Lullaby Trust, Public Health England, Unicef UK Baby Friendly Initiative and Basis recognise that parents will sometimes sleep with their baby and give some key guidance for safer bed sharing.

• Keep the space around your baby clear of pillows and duvets • Always sleep your baby on their back • Avoid letting pets or other children in the bed • Make sure your baby cannot fall out of bed or become trapped

between the mattress and wall • Never leave baby alone in the bed

You should never sleep with your baby on a sofa or armchair, this increases the risk of SIDS by 50 times.

It is important to know there are some circumstances where it is dangerous to share a bed with your baby. You should not do so if:

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• Either you or anyone in the bed smokes (even if you do not smoke in the bedroom)

• Either you or anyone in the bed has recently drunk any alcohol • You or anyone in the bed has taken any drugs that make you feel

sleepy • Your baby was born prematurely (before 37 weeks of pregnancy)

or weighed under 2.5kg or 5½ lbs when they were born

For more information on safer sleep for your baby, download the free guide here.

Sands (The still birth and neonatal death charity)

Baby loss charities respond to latest infant mortality statistics 17 June 2019

Leading baby loss charities Sands, Tommy's, Bliss, and Tamba are jointly calling on the Government to redouble efforts to meet their ambition to halve the rate of stillbirth and babies dying shortly after birth by 2025.

Figures for England published today by the Office for National Statistics (ONS) highlight that while the rate of stillbirths is reducing, there is still a long way to go to meet the Government’s ambition to reduce this by 50% by 2025. The rate of babies dying shortly after birth has plateaued.

Jane Brewin, Chief Executive at Tommy’s, said: "The fall in the number of stillbirths in recent years is welcome, but we need renewed momentum and new prevention strategies to bring rates down considerably further, if we are to stay on track to meet the government’s ambition to halve these deaths by 2025. The lack of progress with neonatal deaths in the last two years is particularly concerning. It is no good reducing stillbirths if more babies are instead dying soon after birth.”

These figures highlight that while stillbirths will be reduced by 20% by 2020, the rate of babies dying shortly after birth has been increasing since 2014. There is much more to be done to reach the ambition of a 50% reduction in baby deaths by 2025.

It’s clear that baby deaths are higher in more socially deprived areas – we urgently need to understand better why this is the case and new strategies to tackle this inequality.

The full ONS statistical release can be found here.

National Bereavement Care Pathway helps improve care received by parents

10 May 2019

32 Number CDP 2019-0222 , 7 October 2019

A project to improve the quality of care that bereaved families receive when their baby dies has been found to be making a big difference, and should be rolled out nationally, a new study has found.

To ensure bereaved parents and their families are supported in the best way possible, the National Bereavement Care Pathway (NBCP) was launched in 2017 and has been piloted in 32 NHS Trusts in England.

The NBCP helps professionals to provide families with a greater consistency and quality of bereavement care after pregnancy or baby loss.

Independent research by Fiveways previously highlighted improvements made in the 11 Wave one sites when it reported its findings in October 2018.

The final report relating to 21 Wave two sites published today analyses the experiences of bereavement care from parents and healthcare professionals.

The results have revealed high levels of satisfaction with the bereavement care they received when their baby died. Parents also said the hospital was a caring and supportive environment, they were treated with respect and many feel the decisions they made in the hospital were the right ones at the time.

Collaborators in the project including baby loss charities and Royal Colleges are calling on NHS Trusts to adopt the National Bereavement Care Pathway and adhere to nine specific bereavement care standards.

Minister for Mental Health, Jackie Doyle-Price MP, said: “Every stillbirth or baby loss is a tragedy and we remain absolutely committed to supporting parents through this difficult time.

"This independent evaluation shows that NBCP has already helped to strengthen the support for many bereaved families across the country, but there is more to do and I would urge all NHS Trusts to adopt this approach to ensure all care surrounding baby loss meets these consistent standards.

"Through our Long Term Plan for the NHS we are also accelerating action to halve the number of stillbirths and neonatal deaths over the next five years and improving access to perinatal mental health care for mothers and their partners."

Surveys completed by 1,268 health care professionals and a further 494 in the follow up, revealed the Pathway has improved staff capability and bereavement care practice amongst teams working at the 21 Wave two Trusts.

Since the Pathway was introduced, more health care professionals feel they now have consistent and clear guidelines which support them to provide good quality care for bereaved parents. The Pathway has improved the dialogue between hospital departments which has helped professionals to deliver care more consistently.

Baby Loss Awareness Week 2019 33

The experience of bereavement care were gathered from 63 parents accorded in an online survey. 84 per cent agreed the hospital is a caring and supportive environment with 92 per cent agreeing they were treated with respect.

Clea Harmer, Chief Executive at Sands, which leads on the NBCP and Chair of the NBCP Core Group, said: “Parents who receive poor care can exacerbate the grief they feel, but good care can and does help them on their painful journey. That’s why the NBCP is so important because every parent equally deserves excellent bereavement care. It’s the very least we can do for them.

“Sands is delighted that the independent evaluation of the NBCP has highlighted the impact excellent bereavement care can have for bereaved parents and on enhancing collaborative working amongst healthcare professionals, which has met the initial objectives that Sands and our partner organisations set out to achieve.

“The NBCP has made a huge difference to the lives of bereaved parents and healthcare professionals, and has improved the care they receive. We would like to see the Pathway rolled out nationally, so that all bereaved parents receive the quality care they deserve.”

Jane Fisher, Director, Antenatal Results and Choices (ARC), said: “For us at ARC, it is very gratifying to read bereaved women commending the sensitivity of care they received through the painful experience of ending a pregnancy after a prenatal diagnosis. It is also really positive that health care professionals are able to use the NBCP to change local policy and protocols to provide more parent-centred bereavement care.”

Helen Kirrane, Campaigns and Policy Manager at Bliss, the premature and sick baby charity said: “Nothing will ever be able to take away the grief parents suffer when they lose a baby but ensuring the right care and support is in place can help them come to terms with their tragic loss. The results from this survey show that the NBCP is already making a difference to the experience of bereaved parents at pilot sites. We urge all NHS Trusts and health boards to adopt the pathway and ensure healthcare professionals feel properly equipped to care for bereaved parents.”

Jenny Ward, acting CEO of The Lullaby Trust, said: “We are delighted to see the positive outcomes of the evaluation. It proves just how vitally important proper care is in the journey of bereaved parents. We hope that this encourages other areas to provide a consistent level of support to families going through the trauma of a child death.”

Ruth Bender-Atik, Chief Executive of the Miscarriage Association, said: “The Miscarriage Association is delighted that the independent evaluation has demonstrated that implementing the NBCP has led to improvements in bereavement care for those affected by loss. We are particularly pleased that there is positive feedback regarding the care provided for those bereaved through early losses and we join our partners in calling for a national roll-out of the NBCP.”

34 Number CDP 2019-0222 , 7 October 2019

NHS Trusts are being encouraged to take up the NBCP as part of the collaboration’s roll out plans. A number have already taken part in local workshops to identify gaps in local practice and to develop plans to improve bereavement care, based on the 9 bereavement care standards promoted by the group.

Further information regarding these standards, how to register with the pathway and other details can be found on the NBCP website.

Ministry of Justice

New powers to investigate stillbirths 26 March 2019

Bereaved parents who suffer a stillbirth would gain answers from an independent inquest into their baby’s death under plans to improve the way such tragedies are investigated.

• Government acts to help bereaved parents find answers following stillbirth

• New plans for coroners to investigate stillbirths • Part of wider plans to help prevent future stillbirths and improve

maternal care

The government today (26 March 2019) launched a consultation on proposals to give coroners the power to investigate all full-term stillbirths – which would help provide parents with vital information on what went wrong and why, while ensuring any mistakes are identified to prevent future deaths.

Respond to the consultation: Coronial investigations of stillbirths

At present, coroners can only hold inquests for babies who have shown signs of life after being born. They cannot investigate where the pregnancy appeared healthy but the baby was stillborn. In these circumstances the Healthcare Safety Investigation Branch must investigate the death.

While many parents are satisfied with existing processes, some have raised concerns about the inconsistency of investigations and have called for a more transparent and independent system.

Ministers are therefore asking for views on whether coroners should be able to investigate stillbirths. As judicial office holders, coroners would not only be able to provide parents with much needed answers but also make recommendations to prevent future avoidable deaths.

In addition, the proposed system will ensure that both bereaved parents and medical staff are involved at all stages of the process.

Justice Minister Edward Argar said:

A stillbirth is a tragedy which has a profound effect upon bereaved families. We must ensure that every case is thoroughly and independently investigated.

Baby Loss Awareness Week 2019 35

These proposals would ensure that bereaved parents have their voices heard in the investigation, and allow lessons to be learnt which would help to prevent future stillbirths.

Health Minister Jackie Doyle-Price said:

We want to do everything we can to make pregnancy safer, by continually learning to improve the care on offer so fewer people to have to experience the terrible tragedy of losing a child and those who do get the answers and support they deserve.

Rates of stillbirths in England are the lowest on record, but we’re committed to delivering on our ambition in the NHS Long Term Plan to accelerate action to halve this number by 2025.

This is a complex issue and it’s important we get it right by listening carefully to those who are affected by these issues, so I urge everybody to have their say on this consultation. By sharing your experiences you can ensure any decision we make puts women, loved ones and their babies first.

Kate Mulley, Director of Research, Education and Policy at Sands said:

At Sands bereaved parents often tell us how vitally important it is to understand why their baby died and that the best legacy for their baby is to ensure that lessons are learned to prevent future deaths.

We believe their views must be taken into account when determining any changes in the role of coroners. This consultation by the Ministry of Justice raises important questions and we would encourage anyone affected to make their views known.”

The joint consultation from the Ministry of Justice and the Department for Health and Social Care seeks a wide range of views, from bereaved parents, the organisations that support them or that provide advice to pregnant women, researchers, health professionals and healthcare providers, as well as those working for coronial services.

Under the proposed system:

• Coroners will have powers to investigate all full-term stillbirths occurring from 37 weeks pregnancy

• The coroner will consider whether any lessons can be learned which could prevent future stillbirths

• Coroners will not have to gain consent or permission from any third party in exercising this power

• Coronial investigations will not replace current investigations undertaken by the hospital or NHS agencies

Whilst the UK’s rates of stillbirth are the lowest on record and we have seen year-on-year falls in the proportions of pregnancies that end in a stillbirth, the government is clear that more must be done.

These measures are an important step towards delivering the government’s commitment to reduce the rate of stillbirths and make the NHS the safest place in the world to give birth.

36 Number CDP 2019-0222 , 7 October 2019

5. Parliamentary coverage

5.1 Statements • Amendment to the Social Security Contributions and Benefits Act

1992

I am pleased to announce that today the Social Fund (Children’s Funeral Fund for England) Regulations 2019 are being laid before the House. It is the Government’s intention that these Regulations will come into effect on the 23rd July.

The laying of these regulations fulfils the Prime Minister’s commitment to establish the Children’s Funeral Fund for England (the “CFF”).

No parent should ever have to endure the unbearable loss of a child. Whilst recognising that nothing can ever truly heal the pain of such a loss, it is right that the Government ensures that all families who lose a child are given the support they need.

Under the CFF, bereaved families will no longer have to meet the fees charged for a cremation or burial of a child under the age of 18. Rather, they will now be able to access this provision for free at the point of need, with the costs being met by Government funding and providers applying to the CFF for reimbursement. As a further gesture of this Government’s commitment to supporting bereaved people, families in England will also be provided with a contribution of up to £300 towards the price of a coffin (or shroud or casket, where preferred), and will meet other specified expenses.

The CFF marks a key milestone in the delivery of the Government’s manifesto commitment to provide bereaved parents with the support they need. Its provision will be universal, available to all bereaved parents in England who have lost a child regardless of their means. It is also intended to complement other measures such as the Parental Bereavement (Leave and Pay) Act 2018, which received Royal Assent last September and is expected to apply from April 2020.

We have worked closely across Government to ensure that the CFF is compatible with other relevant measures and will continue to work with Devolved Administrations to ensure coordination with their own equivalent schemes. In particular, I have worked closely with the Parliamentary Under-Secretary of State for Family Support, Housing and Child Maintenance, and officials in the Department for Work and Pensions in order to ensure the CFF’s compatibility with the Social Fund Funeral Expenses Payment scheme.

In developing the CFF, we have engaged with a range of interested parties from across the funeral services sector, whose insight and

Baby Loss Awareness Week 2019 37

expertise continue to be invaluable to ensuring the successful implementation of the CFF. I am also grateful for the continued support offered to bereaved families by the wider funeral industry. I hope that the CFF will be a welcome addition to the existing free provision which is already made available for families who have suffered the loss of a child.

In conclusion, I would like to pay tribute to the tireless work of the Honourable Member for Swansea East in bringing this important issue to the Government’s attention. Drawing on her own experience, she has led a courageous campaign to secure this additional support for all those families who, tragically, face the burden of losing a child. As the Prime Minister has said, it is in memory of the Honourable Member’s own son, Martin, that the CFF is being established.

01 Jul 2019 | Written statements | House of Commons | HCWS1681

Member: Edward Argar

Department: Ministry of Justice

• Consultation on coronial investigations of stillbirths

I am pleased to announce the publication of a consultation on introducing the coronial investigation of stillbirths in England and Wales (CP 16), which has been laid before the House today.

Under current legislation coroners cannot investigate a death when it is known that the baby was not born alive. If there is doubt whether a baby was born alive, a coroner can investigate (which could include holding an inquest), but must halt that investigation if they determine that the baby was stillborn. Our consultation considers the case for coroners investigating stillbirths and sets out proposals for how these investigations could be undertaken. The proposals seek to deliver three objectives:

• to bring greater independence to the way stillbirths are investigated;

• to ensure transparency and enhance the involvement of bereaved parents in stillbirth investigation processes, including in the development of recommendations aimed at improving maternity care; and

• to effectively disseminate learning from investigations across the health system to help prevent future avoidable stillbirths.

The consultation delivers the Government’s commitment to consider enabling coroners to investigate stillbirths, made in November 2017, when the then Secretary of State for Health launched a suite of Maternity Safety Strategy initiatives and committed to halve stillbirth rates by 2025.

It is thus a joint undertaking between the Ministry of Justice and the Department of Health and Social Care. I and the Parliamentary Under-Secretary of State for Mental Health, Inequalities and Suicide Prevention (Jackie Doyle-Price) are grateful to the many people and organisations

38 Number CDP 2019-0222 , 7 October 2019

that have worked with officials in both Departments as we have developed our proposals.

Since the November 2017 announcement, meetings have been held with a wide range of interested parties including bereaved parents and supporting charities, the Chief Coroner and a number of Senior Coroners, NHS representatives, Healthcare Safety Investigation Branch officials, officials in the Welsh Government, academics and the Royal Colleges of Pathologists, Midwives, and Obstetricians and Gynaecologists. Their insight and expertise have been invaluable in helping us develop our thinking.

The consultation seeks views on the merits of coroners inquiring into the causes of stillbirths and contains proposals as to when and how those investigations should take place, reflecting existing processes and arrangements for coronial investigations into child and adult deaths.

We propose that all stillbirths that occur at or after the 37th week of gestation should be in scope of an inquest and our proposals cover such matters as access to documents and medical examination of the stillborn baby.

A coronial investigation would provide greater transparency in stillbirth cases. Under our proposals evidence would be available to all interested persons, including the bereaved parents, who may not otherwise have the opportunity to hear or read everything that is presented when a stillbirth is reviewed. The coroner would bring judicial independence which would help build confidence in the conclusions of the investigation.

We propose that coroners should identify where lessons can be learnt from individual stillbirths in ways that will deliver system-wide improvements to the delivery of maternity services and the general care and safety of expectant mothers.

Whilst we have been developing our proposals, Tim Loughton MP’s Private Members' Bill, the Civil Partnerships, Marriages and Deaths (Registration Etc.) Bill, has been progressing through Parliament. The Bill, which is supported by the Government, seeks among other things to place a duty on the Secretary of State to prepare and publish a report on whether, and if so how, the law ought to be changed to enable or require coroners to investigate stillbirths. The consultation document takes account of the views expressed by members of both Houses during the debates on the Bill.

The consultation document and an impact assessment have been placed in the Library of the House and are available online at: https://consult.justice.gov.uk/digital-communications/coronial-investigations-of-stillbirths. Copies of the consultation document and the impact assessment are being sent to the stakeholders listed at Annex A of the consultation document.

We look forward to hearing from anyone with experience of, or an interest in, this important and sensitive area.

Baby Loss Awareness Week 2019 39

The consultation closes on 18 June and the Government will publish its response later this year.

26 Mar 2019 | Written statements | House of Commons | HCWS1448

Member: Edward Argar

Department: Ministry of Justice

5.2 Debates • Children’s Funeral Fund

01 May 2019 | Parliamentary proceedings | 659 cc319-326

• Bereavement Counselling

26 Mar 2019 | Parliamentary proceedings | 657 cc294-300

• Children with Life-limiting Conditions

29 Jan 2019 | Parliamentary proceedings | 653 cc289-313WH

• Baby Loss Awareness Week

Motion, That this House has considered baby loss awareness week 2018. Agreed to on question.

09 Oct 2018 | Backbench debates | House of Commons | 647 cc77-113

5.3 PQs • Cot Deaths

Asked by: Rosindell, Andrew | Party: Conservative Party

To ask the Secretary of State for Health and Social Care, what steps he is taking to reduce the number of cases of sudden infant death syndrome.

Answering member: Jackie Doyle-Price | Party: Conservative Party | Department: Department of Health and Social Care

Public Health England (PHE) works to reduce the incidence of sudden infant death syndrome.

PHE does this through the provision of professional leadership and guidance to the health visiting profession such as PHE’s Early Years High Impact Area five - Managing minor illnesses and reducing accidents, to improve outcomes for all children and prevent avoidable deaths. This can be viewed at the following link:

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/756697/early_years_high_impact_area_5.pdf

The Start4Life programme provides information on safe sleeping and sepsis through its Information Service for Parents email programme and the Start4Life website. Information leaflets, posters and social media

40 Number CDP 2019-0222 , 7 October 2019

toolkits are available to general practitioners, hospitals, children’s centres and local authorities. Start for life and the campaign resources can be viewed at the following links:

https://www.nhs.uk/start4life

https://campaignresources.phe.gov.uk/resources/campaigns/2-start4life/resources

PHE also works with the Lullaby Trust such as Safer Sleep Week, co-produced fact sheets for parents and professionals on safer sleep spaces to promote safer choices. This can be viewed at the following link:

https://www.lullabytrust.org.uk/wp-content/uploads/Facts-and-Figures-for-2015-released-2017.pdf

25 Jul 2019 | Written questions | Answered | House of Commons | 280217

• Bereavement Leave: Parents

Asked by: Hendrick, Sir Mark | Party: Labour Party · Cooperative Party

To ask the Secretary of State for Business, Energy and Industrial Strategy, what plans he has to introduce a statutory right to paid leave for bereaved parents who experience ectopic pregnancy or miscarriage.

Answering member: Kelly Tolhurst | Party: Conservative Party | Department: Department for Business, Energy and Industrial Strategy

The loss of a child, including the loss of a pregnancy, is devastating for parents.

The Department is currently working to implement a new statutory right to Parental Bereavement Leave and Pay for eligible parents who lose a child under the age of 18, or suffer a still-birth from 24 weeks of pregnancy. We expect the new right will apply from April 2020.

The policy provides a statutory minimum and we encourage employers to go beyond this where possible. Many employers will have an existing compassionate leave policy or will operate one on a discretionary basis following such losses during pregnancy. We strongly encourage employers to be sensitive and considerate at such a time.

02 Jul 2019 | Written questions | Answered | House of Commons | 270284

• Maternity Services

Asked by: Ashworth, Jonathan | Party: Labour Party · Cooperative Party

To ask the Secretary of State for Health and Social Care, with reference to the NHS Long Term Plan and NHS Planning Guidance commitments for 2019-20, what progress his Department has made on publishing an expansion to the Saving Babies Lives Care Bundle with a focus on prevention of pre-term births; and if he will make a statement.

Baby Loss Awareness Week 2019 41

Answering member: Jackie Doyle-Price | Party: Conservative Party | Department: Department of Health and Social Care

Version two of the Saving Babies’ Lives Care Bundle was published by NHS England and NHS Improvement in March 2019. This version aims to provide detailed information for providers and commissioners of maternity care on how to reduce perinatal mortality across England. The second version of the care bundle brings together five elements of care that are widely recognised as evidence-based and/or best practice. Four of the elements are those covered by version one of the Saving Babies’ Lives Care Bundle; the new fifth element is reducing pre-term birth.

12 Jun 2019 | Written questions | Answered | House of Commons | 260639

• Multiple Births

Asked by: Offord, Dr Matthew | Party: Conservative Party

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure that clinicians follow NHS guidance and best practice on child twin and triplet delivery.

Answering member: Jackie Doyle-Price | Party: Conservative Party | Department: Department of Health and Social Care

The Department expects all clinicians to use the National Institute for Health and Care Excellence (NICE) guidelines to inform their clinical practice. However, to further promote consistency in the levels of maternity care experienced across trusts, all maternity services now have one obstetrician, one midwife and one board level Maternity Safety Champion jointly responsible for championing maternity safety, spreading learning and encouraging best practice within their organisations. This includes adherence to NICE guidelines on issues such as antenatal care for multiple pregnancies.

In addition, every maternity service in the National Health Service is actively implementing elements of the Saving Babies’ Lives Care Bundle, which is designed to tackle stillbirth and early neonatal death.

02 May 2019 | Written questions | Answered | House of Commons | 247008

• Maternity Services

Asked by: Harrison, Trudy | Party: Conservative Party

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support maternity services.

Answering member: Jackie Doyle-Price | Party: Conservative Party | Department: Department of Health and Social Care

Our programme of transformation in maternity services will make the National Health Service one of the best places in the world to give birth by supporting maternity services to deliver safer more personalised care for mothers and babies.

42 Number CDP 2019-0222 , 7 October 2019

The NHS Long Term Plan built on the progress to implement the findings of the national maternity review set out in ‘Better Births’ in 2016, and commits us to continue to work with midwives, mothers and their families to implement the ‘continuity of carer’ recommendation. This will mean that, by March 2021, most women will receive continuity of the person caring for them during pregnancy, during birth and postnatally. Within this, 75% of women from black and minority ethnic groups and disadvantaged communities will have continuity of carer by the end of 2023-24, as the evidence suggests that it particularly improves outcomes for this group.

We also aim to improve safety by rolling out the Saving Babies’ Lives Care Bundle to every maternity unit in England in 2019. The Bundle supports services in reducing still births, with a new focus on preventing pre-term birth. Every trust in England with a maternity and neonatal service is now part of the National Maternal and Neonatal Health Safety Collaborative, which is supporting practical improvements to make care safer in all maternity units. Through this, we are supporting a culture of multidisciplinary team working and learning, vital for safe, high-quality maternity care. By 2022-23 pre-term birth clinics, Fetal Medicine Services and Maternal Medicine Networks will be rolled out nationally to provide access to more specialist expertise to women, babies and the clinicians caring for them.

To underpin the improvements to care, the NHS Long Term Plan committed to the digitisation of maternity information so that by 2023-24 all women will be able to access their maternity notes and information through their smart phones or other devices.

In March 2018, the Department announced plans to train more than 3,000 extra midwives over four years. The Government is providing extra funding for clinical placement costs for 650 students in 2019-20 with planned increases of 1,000 in the subsequent years. The Maternity Workforce Strategy was published in March 2019 by Health Education England to outline how the requirements of Better Births and the ambition to halve stillbirths, neonatal and maternal deaths by 50% by 2025, would be met. This will be achieved through retaining experienced and skilled maternity staff, as well as supporting employers to upskill and develop their workforces through new roles and new ways of working. This includes rolling out the ‘Maternity Support Worker’ role with a national competency, education and career framework; and new routes to becoming a registered midwife, including via apprenticeships.

10 Apr 2019 | Written questions | Answered | House of Commons | 241079

• Mortality Rates: Children and Young People

Asked by: Cooper, Rosie | Party: Labour Party

To ask the Secretary of State for Health and Social Care, what recent assessment the Government has made of changes in the levels of the

Baby Loss Awareness Week 2019 43

mortality rate during (a) infancy, (b) childhood and (c) adolescence in the last five years.

Answering member: Jackie Doyle-Price | Party: Conservative Party | Department: Department of Health and Social Care

The Department commissioned Public Health England to undertake a review of trends in mortality rates across age groups in the United Kingdom. This provides an assessment for five-year age groups between 2001 and 2016. It was published on 11 December 2018 at the following link:

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/786515/Recent_trends_in_mortality_in_England.pdf

Children’s mental and physical health is central to the NHS Long Term Plan. This follows the National Maternity Safety Ambition to halve the 2010 rates of neonatal deaths (as well as stillbirths, maternal deaths and brain injuries that occur during or soon after birth) by 2025, and to achieve a reduction in these rates by 2020. Achieving this ambition would place the UK amongst other high-income countries with the lowest stillbirth and neonatal mortality rates.

05 Apr 2019 | Written questions | Answered | House of Commons | 238307

• Palliative Care: Pregnancy

Asked by: Bruce, Fiona

To ask the Secretary of State for Health and Social Care, what palliative care is available to mothers whose unborn baby receives a diagnosis of a life-limiting disability and wishes to carry her baby to full term; and what plans his Department has to increase the availability of such services.

Answering member: Jackie Doyle-Price | Department: Department of Health and Social Care

The Government is working to improve the care and support for mothers whose unborn baby receive a diagnosis of a life-limiting disability and who wish to carry their baby to full term.

The National Institute for Health and Care Excellence (NICE) ‘Guidance on End of Life Care for Infants, Children and Young People with Life Limiting Conditions’ describes the care and support that families of children with life-limiting conditions should expect to receive. The NICE Quality Standards set out that parents should be given information about emotional and psychological support including how to access it; and when their child is nearing the end of their life, they should be supported in developing an advance care plan for their baby.

These standards are reflected in ‘A Perinatal Pathway for Babies with Palliative Care Needs’ produced by the charity Together for Short Lives and in the ‘National Bereavement Care Pathway’ (NBCP). In 2018, the Department provided £106,000 in funding, in addition to an initial £50,000, to Sands, the stillbirth and neonatal death charity, to work

44 Number CDP 2019-0222 , 7 October 2019

with other baby loss charities and Royal Colleges to produce the NBCP to reduce the variation in the quality of bereavement care provided by the National Health Service. The NBCP is currently being rolled out officially to 32 trusts and in October 2018, all the NBCP guidance materials and tools were published online.

In addition, the Long Term Plan sets out steps that the NHS is taking to improve access to perinatal mental healthcare for mothers and fathers, and support for parents whose children are in neonatal services as well as new investment in local children’s palliative and end of life care services including children’s hospices.

25 Feb 2019 | Written questions | Answered | House of Commons | 224036

• Bereavement Counselling

Asked by: Smith, Laura

To ask the Secretary of State for Health and Social Care, what plans he has for the future roll-out of the National Bereavement Care Pathway; and whether he plans to expand that roll-out.

Answering member: Jackie Doyle-Price | Department: Department of Health and Social Care

All bereaved parents, following baby loss, should be offered the same high standard of care and support in an appropriate environment. The Government committed full funding of over £100,000 for the Stillbirth and Neonatal Death charity (Sands) to continue the roll-out of the National Bereavement Care Pathway (NBCP) in 2018/19. This builds upon £50,000 of start-up funding.

This funding has enabled Sands to actively support 32 NHS trusts and foundation trusts to implement the NBCP over the past two years. An evaluation of Wave 1 implementation found that 94% of parents who received bereavement care in the period the NBCP was used felt that all staff could provide a consistently high level of care and 98% felt they were treated with respect. We would encourage all services caring for parents who experience baby loss to adopt the NBCP. Care providers can access all of the NBCP standards, pathway materials and training resources via the following link:

http://www.nbcpathway.org.uk

The Department’s Business Planning process takes place annually. Expenditure, including any awards made through grant funding, cannot be confirmed until the Business Planning process has been concluded and budgets for the relevant financial year approved.

14 Feb 2019 | Written questions | Answered | House of Commons | 218352

• Multiple Births: Infant Mortality

Asked by: Shannon, Jim

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to prevent deaths in twin babies.

Baby Loss Awareness Week 2019 45

Answering member: Jackie Doyle-Price | Department: Department of Health and Social Care

In 2017, the Department funded the Twins and Multiple Births Association (TAMBA) Maternity Engagement Project. TAMBA’s work has contributed to findings in the recent MBRRACE-UK Perinatal Mortality Surveillance Report, released last year, showing the stillbirth rate for United Kingdom twins almost halving between 2014-16, a fall of 44%. In addition, neonatal deaths among UK twins has dropped 30%.

To reduce variance in the levels of maternity care across trusts, all maternity services now have one obstetrician, one midwife and one board level Maternity Safety Champion jointly responsible for championing maternity safety, spreading learning and encouraging best practice within their organisations. This includes adherence to National Institute for Health and Care Excellence guidelines on issues such as antenatal care for multiple pregnancies.

Every maternity service in the National Health Service is actively implementing elements of the Saving Babies’ Lives Care Bundle, which is designed to tackle stillbirth and early neonatal death. The Care Bundle is undergoing review by an expert oversight group, who are currently reviewing how new Care Bundle elements can contribute to improving outcomes for twin and multiple pregnancies. The NHS Long Term Plan highlights our aim of rolling out the Care Bundle across every maternity unit in England in 2019.

The Maternity Transformation Programme is addressing safety in maternity services, including reducing inequalities in outcomes regarding twin and multiple births through various channels. The programme is supporting Local Maternity Systems to implement best practice care by working with the National Perinatal Epidemiology Unit, which has developed the Perinatal Mortality Review Tool to support standardised perinatal mortality reviews across NHS maternity and neonatal units in England, Scotland and Wales. All trusts in England are now using the tool to identify the factors associated with stillbirth and neonatal death, including within multiple pregnancies.

12 Feb 2019 | Written questions | Answered | House of Commons | 216242

• Baby Deaths and Stillbirths: Cwm Taf University Health Board

Asked by: Ann Clwyd (Cynon Valley) (Lab) | Party: Labour Party

If he will hold discussions with Ministers in the Welsh Government on investigations into the deaths and still births of babies under Cwm Taf University Health Board.

hide answer

Answered by: The Parliamentary Under-Secretary of State for Wales (Nigel Adams) | Party: Conservative Party | Department: Wales

46 Number CDP 2019-0222 , 7 October 2019

I thank the right hon. Lady for raising this very important issue, and my thoughts are with all those families affected. I recognise her continued and passionate dedication to this issue and to ensuring that we have a health service that is fit for everyone. It is imperative that both the internal and external reviews of maternity services in Cwm Taf are both comprehensive and timely. Those affected will rightly be looking for urgent answers and clear action to ensure improvements in patient care and safety.

23 Jan 2019 | Oral questions - Lead | Answered | House of Commons | House of Commons chamber | 908682 | 653 cc234-5

• Baby Care Units

Asked by: Foxcroft, Vicky | Party: Labour Party

To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 18 December 2018 to Question 201219 and with reference to the finding of Sands' Audit of Bereavement Care Provision in UK Neonatal Units 2018 that 12 per cent of neonatal units provide mandatory bereavement staff training, what steps his Department is taking to ensure neonatal units meet the Toolkit for High Quality Neonatal Services standard that all staff have bereavement training.

Answering member: Jackie Doyle-Price | Party: Conservative Party | Department: Department of Health and Social Care

The Toolkit for High Quality Neonatal Services sets out that all staff should have training appropriate to their role in supporting families during bereavement; that each unit has a bereavement lead; and that parents are given written information about bereavement services where relevant.

NHS England is currently undertaking a review of specialised neonatal services in order to improve quality of care and ensure there is sufficient capacity for the future. It will specifically consider the National Bereavement Care Pathway (NBCP), referenced in the Audit of Bereavement Care Provision in UK Neonatal Units 2018, which sets out a comprehensive framework for bereavement support across five stages of pregnancy and baby loss, including neonatal death. Like the Toolkit for High Quality Neonatal Services, the NBCP recommends that bereavement care training is provided to all staff who come into contact with bereaved parents.

All bereaved parents, following baby loss, should be offered the same high standard of care and support in an appropriate environment. That is why the Government recently announced over £100,000 of funding for Sands, the Stillbirth and Neonatal Death charity, to continue the roll-out of the NBCP for 2018/19. This builds upon £50,000 of start-up funding and is in response to the great strides the project is making.

23 Jan 2019 | Written questions | Answered | House of Commons | 208910

• Infant Mortality

Baby Loss Awareness Week 2019 47

Asked by: Brennan, Kevin

To ask the Secretary of State for Health and Social Care, what plans he has to increase support for families who have suffered baby loss.

Answering member: Jackie Doyle-Price | Department: Department of Health and Social Care

The Government is working to improve the care and support received by families who experience baby loss. The Department has provided funding to Sands, the stillbirth and neonatal death charity, to work with other baby loss charities and Royal Colleges to produce the National Bereavement Care Pathway (NBCP) to reduce the variation in the quality of bereavement care provided by the National Health Service.

The NBCP helps professionals to support families in their bereavement after any pregnancy or baby loss, be that miscarriage (including ectopic and molar pregnancy), termination of pregnancy for fetal anomaly, stillbirth, neonatal death or sudden unexpected death in infancy. In October 2018, all of the NBCP guidance materials and tools were published online.

In addition, NHS England’s Perinatal Mental Health Team has been working with Sands to ensure that the NBCP guidelines effectively signpost universal mental health screening and referral to evidence-based interventions and support.

Furthermore, the Pregnancy Loss Review which the Department commissioned earlier this year, has been considering the question of whether legislation should provide new rights to bereaved parents to register pregnancy loss occurring before 24 weeks gestation, as well as investigating the impact of such losses on families and how care can be improved for parents who experience this. The review has been widely consulting with parents, charities and medical professionals and is currently scheduled to be completed in early 2019.

07 Jan 2019 | Written questions | Answered | House of Commons | 204429

• Perinatal Mortality

Asked by: Simpson, David

To ask the Secretary of State for Health and Social Care, what steps his Department taking to reduce the number of stillbirths.

Answering member: Jackie Doyle-Price | Department: Department of Health and Social Care

It is the Government’s ambition to halve the 2010 rates of stillbirths, neonatal and maternal deaths and brain injuries that occur during or soon after birth by 2025 and to achieve at least a 20% reduction in these rates by 2020.

The stillbirth rate in England fell from 5.1 to 4.1 per 1,000 births between 2010 and 2017, representing a decrease of almost 20% and 827 fewer stillbirths. We currently have the lowest stillbirth rate on record.

48 Number CDP 2019-0222 , 7 October 2019

A 20% decrease in stillbirth rates was recorded by early adopters of the Saving Babies’ Lives Care Bundle. All maternity units are now implementing elements of the Care Bundle and there are plans to expand its scope to include other clinical interventions.

We are improving investigations into term stillbirths, early neonatal deaths and other adverse outcomes, with investigations being undertaken by the independent Healthcare Safety Investigations Branch, identifying what went wrong and capturing the lessons learned.

Alongside the Welsh and Scottish Health Departments, we have also funded the Perinatal Mortality Review Tool, launched in 2018. All trusts have now registered to use this tool.

Additionally, the Department of Health and Social Care and the Ministry of Justice are working together to look into whether the law should be changed to expand coronial jurisdiction to stillbirths with the intention that this may help ensure that important lessons are learnt to prevent future deaths.

21 Dec 2018 | Written questions | Answered | House of Commons | 203260

• Maternity Services

Asked by: Foxcroft, Vicky | Party: Labour Party

To ask the Secretary of State for Health and Social Care, with reference to the recent report entitled Audit of Bereavement Care Provision in UK Neonatal Units 2018, published by Sands and Bliss, if he will make an assessment of the adequacy of bereavement care provision in neonatal units.

Answering member: Jackie Doyle-Price | Party: Conservative Party | Department: Department of Health and Social Care

NHS England is currently undertaking a review of its specialised neonatal services in order to improve quality of care and ensure there is sufficient capacity for the future. It will consider the National Bereavement Care Pathway (NBCP), referenced in the ‘Audit of Bereavement Care Provision in UK Neonatal Units 2018’, which sets out a comprehensive framework for bereavement support across five stages of pregnancy and baby loss, including neonatal death.

All bereaved parents, following baby loss, should be offered the same high standard of care and support in an appropriate environment. That is why the Government recently announced over £100,000 of funding for Sands, the Stillbirth and Neonatal Death charity, to continue the roll-out of the NBCP for 2018/19. This builds upon £50,000 of start-up funding and is in response to the great strides the project is making.

Furthermore, the Toolkit for High Quality Neonatal Services sets out requirements that all staff have bereavement training; that each unit has a bereavement lead; and that parents are given written information about bereavement services where relevant. Additionally, the British

Baby Loss Awareness Week 2019 49

Association of Perinatal Medicine Service Standards require that parents whose baby or babies are receiving care in a neonatal intensive care unit should have access to a trained counsellor from the time their baby is admitted.

18 Dec 2018 | Written questions | Answered | House of Commons | 201219

• Multiple Births

Asked by: Lord Jones of Cheltenham

To ask Her Majesty's Government, further to the Written Answer by Lord O'Shaughnessy on 13 November (HL11168) relating to the findings of the Twins and Multiple Births Association Maternity Engagement Project, what assessment they have made of the likely impact on reducing twin stillbirths, neonatal death and neonatal admissions of using Maternity Safety Champions to embed this work.

Answering member: Lord O'Shaughnessy | Department: Department of Health and Social Care

As outlined in the Safer Maternity Care action plan in 2016, networks such as Maternity Clinical Networks, are most effective when built on supportive multi-professional relationships and collaborative working with a focus on specific initiatives to improve care quality.

Maternity Safety Champions at every level – trust, regional and national – are working across regional, organisational and service boundaries to develop strong partnerships and to create the professional culture and leadership needed to deliver better care. They play a central role in ensuring that mothers and babies, including in cases of multiple pregnancy, receive the safest care possible.

Findings in the recent MBRRACE-UK Perinatal Mortality Surveillance Report, released earlier this year, showed the stillbirth rate for United Kingdom twins almost halving between 2014-16, a fall of 44%. In addition, neonatal deaths among UK twins has dropped 30%. NHS England collects neonatal unit admission data. However, this data cannot be disaggregated to identify admissions of twins.

06 Dec 2018 | Written questions | Answered | House of Lords | HL11851

5.4 Other Parliamentary material • Correspondence with the Parliamentary Under-Secretary of State

relating to coronial investigation of still births.

02 Apr 2019 | Parliamentary committees - Unprinted papers - Select Committee written evidence | House of Commons

Corporate author: Justice Select Committee

50 Number CDP 2019-0222 , 7 October 2019

6. Further reading Department of Health and Social Care

Safer maternity care, 17 October 2016

NHS England

Saving Babies’ Lives Care Bundle

MBRRACE-UK: Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries across the UK

All-Party Parliamentary Group on Baby Loss

The Lullaby Trust is the secretariat for the APPG on baby loss

Baby Loss Awareness Week website.

Bliss: for babies born premature or sick

Child Bereavement UK

The Lullaby Trust

The Miscarriage Association

SANDS

Tommy’s

The Lancet, February 2016

Stillbirths: ending preventable deaths by 2030

Nuffield Trust

Are the government’s targets for reducing stillbirths and neonatal deaths achievable?

6 Nov 2018

DEBATE PACK CDP 2019-0222 7 October 2019

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