Independent report

Pregnancy Loss Review - summary report

Published 22 July 2023

Applies to England

Our vision for high-quality baby loss care

Everyone is affected by early baby loss. Those who have not personally experienced it will know of a relative, a friend, a work colleague or an acquaintance who has experienced baby loss before 24 weeks’ gestation. These losses may be due to miscarriage, ectopic or molar pregnancy, or because parents have made a heart-breaking decision to terminate a much-wanted pregnancy after receiving a diagnosis that their baby has a serious congenital anomaly.

Many of the people who contributed to this independent Pregnancy Loss Review have been traumatised by their baby loss experience, and we are grateful that they have chosen to share their stories with us. We heard how early loss is commonly viewed as a ‘clinical episode’ and how some healthcare professionals do not take individuals’ emotional and physical pain seriously. Very few women we spoke to had had any offer of emotional support or mental health screening, and this was even less in the case of their partners.

We learned how women are constantly being bounced between GPs, 111, accident and emergency (A&E), gynaecology and maternity services, and we heard harrowing accounts of women being made to wait in public spaces, often bleeding through their clothing, while sitting alongside pregnant individuals and their partners. Disturbingly, we heard from many women who had miscarried at home on how they were advised to retrieve their baby’s remains from the toilet and how they had been advised to store their baby’s remains in a Tupperware container in their fridge at home until their local early pregnancy loss unit was open, which was often for multiple days.

We are aware that many NHS trusts have care pathways in place, whether their own or national, and are making substantial advancements in the bereavement and clinical care that they provide. This review seeks to ensure that:

• all trusts and organisations can offer a consistent and forward-thinking service
• excellent care is acknowledged and rewarded
• areas of concern are highlighted so that improvements can be made

When tasked with writing this independent Pregnancy Loss Review by the Secretary of State for Health and Social Care, it was tempting to only recommend things that could be easily delivered, but this is not what we were asked to do. We were instructed to consider what ‘good’ compassionate care could look like, and to not only identify gaps in service provision, but also to examine why families have been failed time and time again, and the reasons why staff members have not been supported in their high-pressure roles.

This has resulted in us producing what could be considered a long list of recommendations, some of which we hope will be implemented immediately, while others would need to form part of a long-term strategy. We fully understand and appreciate that many of the recommendations will involve significant investment in infrastructure, workforce and digital transformation, but we have been reassured in the meetings we have conducted that the government, Department of Health and Social Care (DHSC) and NHS England (NHSE) are committed to effecting lasting change, and so we trust that the investment will be made.

We have avoided endorsing individual organisations and charities by name within the recommendations as we are acutely aware that there are many national and local organisations doing incredible work, and it was not possible to mention them all. We have, however, highlighted some national and local organisations within the body of the report to ensure best practice and good work is recognised and acknowledged.

This report sets out our vision for improving the care of people who experience pre-24-week baby loss. It describes a system in which:

• everyone receives high-quality education about pre-24-week baby loss before they become pregnant through the statutory relationships, health and sex education (RHSE) curriculum
• all groups of people – regardless of race, colour, age, gender, sexual orientation or religion – have their voices heard and choices upheld
• there is clarity about whom to call and where to go when pain and bleeding occur at any stage of pregnancy, and what to expect during and after baby loss
• access to compassionate clinical care in appropriate healthcare settings is available 24 hours a day, 7 days a week through networked services
• all parents receive clear and consistent information and support, enabling them to make decisions about their physical and mental health care needs during and after baby loss
• care is compassionate, individualised and respectful of personal, cultural, religious and language preferences, and parents and their babies (including baby loss remains at any gestation) are cared for with dignity and respect
• regardless of gestation, all bereaved parents are offered choices regarding creating memories of their baby and options regarding marking their loss, such as funerals or memorial ceremonies, as appropriate
• women and partners experiencing loss are routinely offered mental health support following a loss, and have access to specialist counselling and mental health services, where appropriate
• bereaved parents can, on request, receive a baby loss certificate from the government, whether their loss was recent or historic
• following a baby loss, individuals and couples are supported to understand why the loss occurred, and are offered a follow-up appointment to discuss the results and implications of any investigations. A robust management plan must be in place for subsequent pregnancies – this may include referral to a specialist consultant obstetrician or gynaecologist
• all healthcare professionals working in baby loss services receive multidisciplinary mandatory bereavement care training and information, including education on the importance of psychological wellbeing and self-care for staff to ensure they can provide the highest quality of care. Staff should be allocated time to attend, and their compliance should be monitored
• employers recognise the impact of baby loss on employees and human resources (HR) policies are updated to support their staff
• there are systems in place for employers to manage the potential impacts on the mental health and wellbeing of all staff employed in workplaces providing baby loss services

Recommendations

The following recommendations are intended to support the government and the NHS in creating a forward-looking approach to improve the safety and care experience for all those who have a pre-24-week baby loss. Implementing these recommendations is crucial to improving care for people when they are particularly vulnerable.

We recommend establishing a Pregnancy Loss Review working party, chaired by us, which will ensure that the recommendations and best practice points within this report are actioned.

The highlighted problems and impacts are based on evidence gained from the broad spectrum of meetings, consultations and patient or parent feedback, the work of the review and our professional experience. These problems do not necessarily exist in every primary and secondary healthcare setting, and they are certainly not representative of every healthcare professional. Healthcare professionals working with loss are under huge stress and work under very difficult circumstances, and it is important that we acknowledge this, while simultaneously addressing elements of care that need to change.

Education, training and information

Recommendation 1

The Department for Education must expand the current RHSE guidance for schools to include education on all types of baby loss, not just miscarriage. The supporting teacher training modules should also include information on:

• symptoms of baby loss
• how to access care
• where to access support

While we understand teachers do not want to distress students, it is inappropriate to say that we do not educate people in case we upset them.

Recommendation 2

NHSE should commission the development of a poster on ‘what to do if you have pain or bleeding during pregnancy’ to be made available to GP practices, sexual health clinics, pharmacies and women’s health hubs.

The poster should include a QR code to link to more information and space for contact details for local services.

Recommendation 3

NHSE should work with NHS trusts and their Maternity Voices Partnerships to review the quality and accessibility of information regarding pre-24-week baby loss, including:

• what information should be given at the first antenatal visit
• what to do and how to access services if there is pain and bleeding in early pregnancy

This information should include a list of local services and the care they can expect to receive, as well as emergency contact numbers and medical guidance on managing symptoms. People should know what to expect in advance.

This information must be available in all languages and in easy read and digital formats.

Recommendation 4

NHSE Transformation Directorate, in partnership with Sam Collinge and Zoe Clark-Coates, should undertake a review of the availability and accessibility of information on ‘what to do if you have pain or bleeding in pregnancy’ across all NHS digital platforms, including the NHS website, the NHS App and maternity notes apps (such as Badger Notes), and should take steps to ensure that all information is clear and easily accessible.

This should include links to information on:

• how to access baby loss care services 24/7 based on a woman’s location
• what care they can expect to receive

Recommendation 5

Each integrated care system (ICS) should introduce a pre-24-week baby loss support and advice line that is available 24/7. We suggest that regions work together to pool resources, as a network approach may be more cost-effective.

Where possible, this could be integrated into existing telephone or maternity helplines. The advice lines will be able to provide crucial advice and support. Patients can then be referred to the most appropriate department for treatment and care at a suitable time. Being given an appointment at an early pregnancy assessment unit (EPAU) for the following day could save an individual a late-night trip to A&E.

The Care Quality Commission should monitor that the advice lines have been implemented, and are governed and properly maintained.

Recommendation 6

Information leaflets, bereavement support books and bereavement resources should be available to bereaved parents to take home in all primary and secondary healthcare settings, following a pre-24-week baby loss.

Leaflets must be available in all languages and in easy read and digital format.

Recommendation 7

Bereavement care training, and education and training in breaking unexpected bad news should be mandatory for all clinical and non-clinical staff working in areas where baby loss occurs. The exception to this should be when an appropriate level of competence can be demonstrated.

The training should:

• include experiential personal accounts demonstrating the emotional impact of baby loss
• show how compassionate and excellent clinical care can make a substantial difference to patients

Additional training could be delivered via e-learning modules through the Workforce, Training and Education Directorate of NHSE, or ideally through face-to-face training sessions.

Recommendation 8

All healthcare professionals who may be in contact with anyone experiencing baby loss should receive mandatory training and education in the importance of sensitive communication to ensure that they are fully equipped to care for patients compassionately. The only exception to this is where staff can demonstrate competency.

Staff should also be encouraged to be ‘patient-led’ in their terminology. This could be delivered via e-learning modules through the Workforce, Training and Education Directorate of NHSE.

The General Medical Council (GMC) and the Nursing and Midwifery Council should instruct medical schools, universities and education providers to include this training in their syllabuses.

Recommendation 9

Funding must be allocated to allow NHSE to increase the current investment in NHS staff training to ensure that time is protected for all staff to undertake mandatory annual training in bereavement care. This should be for all baby loss, including pre-24-week baby loss. This will ensure staff can access training during work hours.

Service provision

Recommendation 10

Funding must be allocated so that each hospital maternity unit, EPAU and A&E department can provide appropriate private spaces for patients experiencing pre-24-week baby loss, which are separate from public waiting areas.

Early pregnancy assessment units (EPAUs)

Recommendation 11

NHSE should develop guidance for commissioners of 111 and ambulance services that sets out how to work with trusts to contract appointments with EPAUs so that patients with pre-24-week complications can be sent directly to an EPAU, where appropriate.

This practice already happens in some areas but not everywhere.

Recommendation 12

All areas with an EPAU should receive clinically stable patients directly from the ambulance service during opening hours.

Recommendation 13

People should be able to self-refer to an EPAU with any pain or bleeding during pregnancy, regardless of their gestation or whether they have a history of previous losses.

Recommendation 14

The Royal College of Nursing and Royal College of Obstetricians and Gynaecologists (RCOG) should build on the Nursing Workforce Standards and expand the current work being undertaken by the RCOG in relation to safer care in maternity services to develop a workforce planning tool that is similar to the Birthrate Plus acuity tool for midwives. This would allow safer and more consistent staffing for EPAUs.

Recommendation 15

The National Institute for Health and Care Research (NIHR) should commission additional research into EPAU working practices, accessibility, outcomes for women, and cost-effectiveness (including prospects for new community EPAUs), drawing on the Variations in the organisation of and outcomes from Early Pregnancy Assessment Units: the VESPA mixed-methods study and other studies.

Recommendation 16

NHSE should develop guidance for regional teams and ICSs on how EPAUs might work in networks so that women can access care 24/7 without needing a referral from another healthcare provider.

In any area that is unable to offer 24/7 EPAU services, the trust or integrated care board (ICB) must ensure that the EPAU should operate a minimum of 9am to 5pm opening hours from Monday to Friday, and reduced hours on a weekend.

The guidance should consider different models, such as establishing central hubs and EPAUs in community settings and hospitals. These networks should also support learning and the development of expertise across a geographical area. Where additional funding is needed, this should be allocated.

Recommendation 17

NHSE must ensure that a Directory of Services (DoS) is created in each region, which is locally owned and regularly updated, to ensure that any patient calling 111 or using 111 online is correctly directed to appropriate clinical care.

The DoS should reflect EPAU availability to ensure that women experiencing baby loss are accurately directed to the most appropriate service.

Where services do not currently exist, these should be commissioned and funding allocated.

Recommendation 18

A minimum time allocation of 30 minutes per appointment within an EPAU should be implemented.

Gynaecology services

Recommendation 19

Gynaecology services must be prioritised by each trust, including the ring-fencing of dedicated gynaecology beds co-located in one area, on female-only wards, and funding must be allocated for this.

Recommendation 20

Each ICB must provide a gynaecology day assessment unit (GDAU) that is accessible all day, 7 days a week. This should ideally be attached or near to an EPAU.

The GDAUs should be staffed by specialist gynaecology staff with the ability to scan when necessary. Funding must be allocated for this.

Recommendation 21

Women experiencing pre-24-week baby loss should never be cared for in mixed-sex wards with shared facilities.

Recommendation 22

Women experiencing pre-24-week baby loss should be cared for by specialist healthcare professionals who have received mandatory training in bereavement care and support.

Training resources are currently available within the e-learning modules through the Workforce, Training and Education Directorate of NHSE, and we would welcome the development of more.

Clinical care quality

Physical healthcare

Recommendation 23

The National Institute for Health and Care Excellence (NICE) must be urgently commissioned to update their early loss guideline [NG126] Ectopic pregnancy and miscarriage: diagnosis and initial management to allow NHSE to create a pre-24-week baby loss programme and plan for service development and commissioning that will ensure all updated guidelines are embedded into clinical care.

This will then allow each ICS to create a local pathway based upon local needs. Key objectives would be to ensure consistency around clinical care, mental health support, investigation and standards of care offered to all women.

The guidelines must include the following:

• if a home pregnancy test reveals a positive pregnancy result 3 weeks following a baby loss or pregnancy, or loss symptoms persist, further medical management should be offered to the individual. This may include a clinical review, repeat urine tests, blood tests to check for pregnancy hormones and/or an ultrasound scan
• clear integrated care pathways must be established across primary and secondary care, which must include the updating of IT to allow communication with GP’s IT systems, to improve safeguarding. GPs, community midwives and health visitors must be notified of a baby loss as soon as it occurs
• If an individual experiences a pre-24-week baby loss and requests an appointment with their GP practice, a person-centred consultation should be offered to them. If appropriate or requested by the individual, their emotional health and/or implications for future pregnancies should be discussed. Information about the impact on mental health and trauma that may ensue following a baby loss should be provided, and individuals should be advised that they can self-refer to NHS talking therapies. Clinicians should actively encourage this self-referral if they feel it would benefit the individual

Recommendation 24

The provision of primary and secondary baby loss services should be audited and evaluated by the ICS. This should be based on a quality standard created by NICE based on its updated guideline [NG126].

Recommendation 25

Pregnancy after loss clinics should be established in each hospital offering maternity care. These should be staffed by specialist gynaecology nurses and/or midwives and led by a consultant. When a family is expecting a baby following loss, additional clinical and emotional support is often required and, by offering specialist support, individuals feel heard and understood.

Recommendation 26

To assist healthcare professionals in the care that they provide and prevent individuals having to continually share their experience of loss, a new standardised ‘baby loss lanyard’ should be produced and made available to women through the community midwife, A&E or EPAU.

We have included a lanyard within the ‘Compassionate Clinical Care (CCC) Kit’ (see recommendation 38 below), but this also needs to be separately available for those who are not given a CCC Kit.

Mental healthcare

Recommendation 27

We recommend that further research, evaluation and piloting is required to develop screening tools and pathways for women and their partners suffering with mental health illness as a result of baby loss.

Studies have demonstrated the link between baby loss and post-traumatic stress disorder (PTSD) and depression, which in some cases has resulted in suicide.

Recommendation 28

We recommend that psychological support for pre-24-week baby loss must focus on both parents (not just the mother). The importance of the partner’s mental health as a potentially integral element of the mental wellbeing of a bereaved couple or family, during and following baby loss, should be recognised and acknowledged more widely.

Recommendation 29

Current mental health provision for individuals following pre-24-week baby loss is insufficient and must be improved to ensure support is easily accessible for anybody who needs it.

Recommendation 30

All healthcare professionals caring for women and their partners who experience a baby loss must be made aware, through education and training, of the psychological impact of baby loss, and the increased risk of PTSD and suicide.

This could be delivered via e-learning modules through the Workforce, Training and Education Directorate of NHSE.

Recommendation 31

Where any healthcare professional believes an individual needs evidence-based psychological therapy, a referral must be made to the perinatal mental health team. Confirmation that the referral has been received must be given.

Recommendation 32

When a GP or GP practice is informed that a patient has experienced a baby loss, a letter of support detailing baby loss and counselling support organisations should be posted or emailed, provided the patient has given consent for correspondence.

This is to ensure that the patient knows that their loss has been formally acknowledged and they have access to details of support organisations.

Pain relief

Recommendation 33

NIHR should commission research into pain management for pre-24-week baby loss as our research has shown that patients are often left without suitable or sufficient pain relief.

Recommendation 34

The Royal Colleges of Obstetricians and Gynaecologists, Nursing and Midwives and GPs should develop resources and information to ensure support for healthcare professionals regarding use of analgesia and anti-emetics for anyone experiencing a pre-24-week baby loss.

Sensitive handling and storage of baby loss remains

Recommendation 35

We must have an enforceable guideline or regulation (in line with Human Tissue Authority guidance) surrounding the sensitive disposal of pre-24-week babies’ and baby loss remains, rather than guidance that is not always followed.

Recommendation 36

The NHS, in partnership with Zoe and Sam, should develop and deliver an appropriate and sensitive receptacle in which to collect baby loss remains when a person miscarries.

Recommendation 37

The NHS, in partnership with Zoe and Sam, should develop and deliver an appropriate, respectful container where baby loss remains may be stored following a miscarriage.

Recommendation 38

We are currently working to develop a ‘baby loss kit’, called the Compassionate Clinical Care (CCC) Kit, to be provided to women when a miscarriage is expected or likely to take place in a home or clinical setting. The CCC Kit should comprise:

• a receptacle and a container in which to collect and store the baby’s remains
• clear instructions for the clinician regarding how to explain the use of the kit to the woman (such as using patient-led language)
• clear instructions for the woman on what to do and what to expect
• emergency contact details

Ideally, the kit would also include a lanyard that a person could wear when accessing help or support in any clinical setting, so medical staff are aware of their previous or current loss.

The CCC Kit should be available from all NHS hospitals, GP practices, community health services, pharmacies and so on.

The CCC Kit should also be offered to people who are pregnant again following a previous loss.

Recommendation 39

EPAUs and A&Es should ensure that cold storage facilities (such as a dedicated refrigerator) are available to receive and store baby remains or pregnancy tissue 24/7, so that people are not asked to store them in their home refrigerators.

Recommendation 40

Each trust should offer a choice of personalised, individual or communal funeral services to all individuals who experience pre-24-week baby loss. All parents should be given the opportunity to attend their baby’s funeral, whichever type of funeral they choose.

Palliative care

Recommendation 41

Each trust and ICS should establish and implement a clear clinical pathway (based on the British Association of Perinatal Medicine Perinatal Management of Extreme Preterm Birth Before 27 Weeks of Gestation guidelines, and the Together for Short Lives Perinatal Pathway for Babies with Palliative Care Needs) for pre-24-week gestation babies born with signs of life. This should encourage professionals to work together across multidisciplinary teams and local services to provide sensitive parent-centred end of life care, enabling families to spend time with their baby and create precious memories.

Recommendation 42

To reduce regional variations in neonatal death rates, all clinicians caring for women and babies born before 24 weeks’ gestation should be required to undertake training in the Mothers and Babies: Reducing Risk through Audit and Confidential Enquiries (MBRRACE-UK) national clinical guidance for the Determination of signs of life following spontaneous birth before 24+0 weeks of gestation where, following discussion with the parents, active survival-focused care is not appropriate.

While this clinical guidance has been in place since 2020, there is still much confusion and inconsistency in its delivery.

Recommendation 43

Working with the Royal Colleges, NHSE should develop standardised primary and secondary care clinical guidelines for pre-24-week baby loss, and RCOG should revise their Green-top Guidelines so that local service providers and commissioners can update their local guidelines and service provision.

The guidance should include the following:

• following the first loss, if individuals experience a pre-24-week baby loss and request an appointment with their GP practice, a person-centred consultation should be offered to them. If appropriate or requested by the individual, during this appointment, the individual’s baby loss experience and future pregnancies should be discussed. Information about the impact on mental health and trauma that may ensue following a baby loss should be provided, and individuals should be advised that they can self-refer to NHS talking therapies. Clinicians should actively encourage this self-referral if they feel it would benefit the individual
• following 2 losses, an appointment should be made for blood tests, including full blood count and thyroid function and other necessary investigations. Depending on the results of these tests, along with any other pre-existing or chronic physical or mental health conditions, referrals should be made to the relevant specialism
• following a third baby loss, a consultant-led appointment should be offered at a specialist recurrent miscarriage centre, where possible, so additional tests, including genetic testing, scanning, screening and treatment, may be offered
• the standardised primary and secondary care clinical guidelines should include flexibility to accommodate and prioritise differing factors such as advanced maternal age, infertility, recurrent loss and other medical conditions

Recommendation 44

Individuals recognised as high-risk for baby loss at their booking appointment or at any time during pregnancy should receive personalised care pathways, which may include a higher level of care and monitoring.

Recommendation 45

Specialist recurrent loss clinics should be developed in each region and offer a holistic service approach.

Recommendation 46

We recommend that an NHS-wide flag system should be implemented so that pre-24-week baby loss can be highlighted on parent’s patient notes. This will:

• help healthcare professionals to be aware of any previous losses
• assist them in providing a compassionate and sensitive care experience, without the individual having to repeatedly recount their story of loss

This should work in tandem with the lanyard recommendation (see recommendation 26 above).

Recommendation 47

GMC should look to introduce credentials in Early Pregnancy Loss, and RCOG and the British Society of Gynaecological Endoscopy should consider the opportunities to improve the specialist pathway in Early Pregnancy Loss.

Recommendation 48

RCOG and the Association of Early Pregnancy Units should review training opportunities in Early Pregnancy Loss, Emergency Gynaecology, Prenatal Diagnosis and Recurrent Loss to ensure they meet the need for specialists in this area.

Recommendation 49

In a subsequent pregnancy, an early reassurance scan should be offered and the woman and her partner should be signposted by their midwife to appropriate services for ongoing emotional support and psychological support to help manage anxiety levels.

Ambulance service

Recommendation 50

There should be a review of guidance and training modules for all current and future ambulance staff to ensure they are mentally equipped and appropriately trained in the management of pre-24-week baby loss.

Where a training deficit is identified, this should be immediately addressed and protected time to attend additional training should be sanctioned.

Termination for medical reasons (TFMR) – private providers

Recommendation 51

We understand that hospitals are limited in their capacity and workforce to perform surgical terminations and that the majority of patients undergoing a TFMR are referred to the independent sector. Therefore, it is imperative that all providers have robust protocols and pathways in place for TFMR patients. The NHS and independent providers must have carefully co-ordinated pathways in place for women and their partners undergoing TFMR.

Hospitals and independent service providers should seek to ensure that the partners of patients, or a person of their choice, undergoing a termination can attend the appointment at the clinic, if this is what the patient requests. Excluding partners from what can be an equally distressing experience for both partners is unacceptable.

Where possible, people experiencing a TFMR should not be cared for alongside patients who are choosing to end an unwanted pregnancy.

Sonography

Recommendation 52

Further oversight and governance of the profession of Sonography is essential to ensure that patients are offered safe and compassionate care. We are aware of the impending report from the Society of Sonographers that supports this. We therefore recommend that all sonographers should hold a UK qualification from the Consortium for the Accreditation of Sonographic Education, or overseas equivalent, as called for by the British Medical Ultrasound Society.

Recommendation 53

All sonographers who may need to break unexpected bad news to parents should be required to undertake training on Consensus guidelines on the communication of unexpected news via ultrasound and/or other courses to develop their skills.

Addressing disparities

Recommendation 54

NIHR should commission additional research into why there is an increased risk of pre-24-week baby loss in women from black, Asian and ethnic minority backgrounds and people from socio-economically deprived areas, and what may be done to minimise these risks.

Recommendation 55

National and local guidance should be developed to sensitively address the varying support needs of people who experience a pre-24-week baby loss resulting from alternative routes to parenthood, such as adoption and surrogacy.

Recommendation 56

We support the Law Commission’s proposal on creating a new surrogacy pathway that will allow the intended parents to be the legal parents of the child from the moment of birth, and recommend that this also includes from the moment that baby loss occurs. This would eliminate the multiple obstacles faced by surrogate parents when arranging funeral or cremation services. Support for the intended parent and the surrogate mother should be offered.

Bereavement care and support

Recommendation 57

NHSE must increase capital investment to ensure adequate facilities are provided for bereaved parents. Bereavement suites, counselling rooms and private spaces should be available to all families regardless of the baby’s gestational age. Women and their partners should not be expected to receive unexpected bad news, discuss treatment options or grieve in public spaces. Funding should be allocated for this.

Recommendation 58

NHS England must focus on recruiting and retaining more specialist gynaecology nurses and bereavement midwives, with equality of banding and pay. These roles are imperative to the delivery of safe and compassionate care to families experiencing baby loss – however, due to them not being prioritised by all trusts, these roles are chronically underfunded and undervalued.

Recommendation 59

NHS England must ensure that specialist ‘bereavement teams’ are established in all hospital trusts to ensure that best practice is applied service wide. These teams should include the Bereavement Lead Midwife, Lead Gynaecology Nurse, lead from EPAU, lead from A&E (where applicable), Lead Chaplain, Lead of Neonatal, Lead of Paediatrics, Trust Bereavement Services Lead and the Mortuary Manager.

The team should meet at least monthly to:

• review cases
• share learning and best practice
• develop policies and procedures to create a forward-thinking maternity bereavement service for baby loss at all gestations

This team approach would ensure that, regardless of in which department the loss occurs, the same level of emotional care and practical support is offered.

Recommendation 60

All trusts must ensure they have a sufficient number of key staff who are fully trained (having undertaken the Perinatal Post-mortem Consent training programme or similar) in taking consent for post-mortem, and the histological and genetic testing of early pregnancy loss remains, and that only these staff should be permitted to seek consent for a post-mortem.

Additionally, it is essential that they are fully conversant with the current national and local consent processes relating to this to ensure that all individuals considering these investigative procedures receive high-quality information in a timely manner.

All trusts should monitor this training and compliance.

Baby loss certificate

Recommendation 61

In recognition of a life lost, the government must ensure that an official certificate is available to anyone who requests one after experiencing any loss pre-24 weeks’ gestation.

The certificate must:

• be backdate-able with no cut-off point so people with a historic loss may also access this long-requested recognition
• be available to anyone regardless of the type of loss they have experienced. Parents must have the option to be able to supply evidence of the loss, but this should not be mandatory
• contain wording that is adaptable (including an option to add a baby’s name) as it is vital that parents are able to choose the language they prefer
• be available as a download or as a hard copy. The certificate needs to be accessible by all, not just by people with access to a computer
• be available to both parents

To ensure the certificates remain credible, the applicant should be required to provide identity verification.

The certificates will not be legal certificates, but will be official government-issued ones, and should look official, rather than just commemorative, as it is crucial to families that they have official recognition of their loss.

We will continue to partner with the NHS Business Services Authority to design and deliver this as quickly as possible.

Primary and secondary care chaplaincy

Recommendation 62

All bereavement support services provided by each trust and healthcare provider must ensure that:

• the spiritual and cultural care needs of each patient are met
• hospital chaplaincy or pastoral services are offered to all individuals and their partners experiencing loss, regardless of the type of loss or gestation

Recommendation 63

A primary care chaplaincy or pastoral service has already been trialled in multiple areas including Birmingham, Dudley and across Scotland. GPs are able to socially prescribe listening services to patients.

This should be rolled out across all primary care nationally.

Patient records, IT and data

Recommendation 64

NHSE should issue guidance to all staff on using electronic patient records systems to record pre-24-week baby loss. The data fields for recording such losses and generating notices to other electronic patient notes systems (such as GP patient records) must be made mandatory to prevent patients from being notified of outstanding maternity appointments and scans in error.

We understand that this is a long-term objective rather than something that can be achieved both easily and quickly, but this must be prioritised in the current digital transformation programme.

Recommendation 65

People should be able to inform their GP that they are pregnant or that they have had a pre-24-week baby loss via apps such as MyNHS or MyGP or an alternative simple system.

The system should trigger push notices to ensure that the patient has relevant information on pregnancy, baby loss, mental health care and support services.

Monitoring data

Recommendation 66

While it would be beneficial to have published data of all pre-12-week baby loss, and we would fully support it if it could be accurately collected, our extensive investigation and consultations have shown that the current data collection systems are unable to deliver this. Furthermore, because the majority of baby loss occurs outside of primary and secondary care settings, and as it is the choice of the individual to disclose a baby loss, it would be impossible to gather any accurate data.

Experts in NHS digital data collection systems have stated that, even if it was possible to collect some data, the inconsistency of this information could be detrimental to the provision of care as the data collected would not reflect the true scale of the problem.

However, we recommend that the NHSE Transformation Directorate or NIHR should undertake research into the feasibility of pre-12-week data collection.

Recommendation 67

DHSC should commission NHSE’s Transformation Directorate to collate and publish monthly data on all mid-trimester loss (that is 12 to 23 weeks plus 6 days’ gestation).

Monthly reports providing data that can be delivered from existing data sets should be identified and published as soon as possible.

The workplace

Recommendation 68

All organisations should update their HR policies and practices to adequately support staff who experience pre-24-week baby loss.

Recommendation 69

The NHS should be a leading example in offering excellent bereavement support and leave to staff who experience pre-24-week baby loss.

We recommend that up to 10 days of paid leave for the person who is pregnant and 5 days for the partner should be provided for any pre-24-week baby loss. A ‘fitness for work’ statement from a GP should not be required unless additional time off is required.

This paid time off should not be used for ‘sickness trigger’ purposes.

In addition, NHS employees (both the person experiencing the loss and their partner) should be offered paid time off for appointments linked to pregnancy or baby loss, and flexible working arrangements should be offered, where possible.

Recommendation 70

Each trust should offer reasonable bereavement leave and remove any restrictions limiting bereavement leave to 3 days a year.

Recommendation 71

Trusts should not group bereavement, sickness and parental leave in the same category.

Recommendation 72

The NHS must put adequate mental health support in place for all NHS staff.

Recommendation 73

The NHS must instruct trusts to offer regular restorative clinical supervision sessions to staff who are working with loss on a daily basis – examples of which are bereavement midwives and antenatal screening midwives.

Staff debriefing sessions should be set up by managers to support anyone affected by their work around pre-24-week baby loss to help reduce stress and burnout.

Legal age of viability

At the start of this review, in response to requests from MPs, we initially considered reviewing whether the legal age of viability should be reduced from 24 weeks to 20 or 22 weeks in line with some other countries.

However, it was decided, following an advisory panel meeting, that this was outside of the scope of the terms of reference for this review.

Conclusion

We took on the role as co-chairs of this review in the hope that we could transform the landscape for pre-24-week baby loss care for this and future generations, and it feels surreal to be now writing the final pages of this report.

We were initially given 6 months to examine the crisis in pre-24-week baby loss care – however, due to the sheer magnitude of the issues we were tasked with reviewing, the 6 months’ timescale was not realistic. Little did we know that the review would take 5 years to complete and, while Brexit and the coronavirus (COVID-19) pandemic paused the work for some time, we still feel that we have only just scraped the surface of the mountain we have had to climb in carrying out this huge body of work.

Though the journey has been a long and arduous one, it has been a great privilege and an honour to have witnessed many excellent examples of care within the primary and secondary care settings that we visited. Conversely, we were saddened and appalled to hear about and observe some truly shocking practices that require immediate intervention.

An estimated 254,000 babies die in pregnancy or at birth each year in the UK. This means that, since this review commenced, approximately 1,270,000 babies have died, leaving millions of parents, siblings and extended family members heartbroken. While it is not possible to prevent many of these losses from occurring, we can ensure that each grieving parent receives excellent care and compassionate support, and we all have a responsibility to do this.

Our hope and trust are that the recommendations we have made in this report are swiftly and effectively implemented. Some recommendations will offer an immediate difference, while others will take many years to alter practice. Nonetheless, it is vitally important that this transformation starts as quickly as possible.

As leaders working in the field of baby loss – but, just as importantly, as mothers who, ourselves, have experienced baby loss – we hope that this review is a catalyst for lasting change.

And to every family who has had to say goodbye to a much-loved baby, we dedicate this work to you.

Acknowledgements

This review exists due to the Chancellor of the Exchequer, the Right Honourable Jeremy Hunt MP. His belief that bereaved families deserve better led him to launch this independent review when he was in the role of Secretary of State for Health and Social Care. We thank Number 10 for supporting us, our work and this review.

We would also like to acknowledge Tim Loughton MP, whose passion for driving change led him to launch the Civil Partnerships, Marriages and Deaths (Registration etc) Bill (now the Civil Partnerships, Marriages and Deaths (Registration etc) Act 2019) that led to this review.

We thank Professor Jacqueline Dunkley-Bent OBE for her support and Baroness Floella Benjamin DBE for her constant belief in us and our work.

Thank you to Parliamentary Under-Secretary of State Maria Caulfield MP and the Secretary of State for Health and Social Care, the Right Honourable Stephen Barclay MP, for supporting this review and being committed to its implementation and change.

We can do better as a country in supporting anyone affected by baby loss, and those in leadership are responsible for changing the system so that it is better for this and future generations.

Finally, and just as importantly, we want to acknowledge the families who shared their personal stories with us.

You have bravely shared intimate details of your experiences and told us about the care that you received, both good and bad. In your desire to ensure that others experiencing baby loss do not have to suffer the same pain and heartbreak that you have endured, you have been willing to reopen traumatic wounds and expose areas of care that need radical change. Each of you was determined that your journey and your baby’s life would be recognised and honoured – for that we are extremely grateful.

Thank you from us and thank you from every other bereaved family.

Advisory panel

We would like to thank all members of the Pregnancy Loss Review Advisory Panel, who gathered at the commencement of this review. Thank you for sharing your thoughts and discussing the scope of the review with us.

The advisory panel:

• met 4 times at the start of the review process
• were shown a draft version of the recommendations and a near-final draft of the complete review
• were then invited to feedback prior to its publication

Zoe Clark-Coates MBE BCAh

Samantha Collinge RM

References

Association of Chaplaincy in General Practice. Essential Values and Principles for Chaplaincy in General Practice. 2021.

Association of Chaplaincy in General Practice. GP Chaplaincy Handbook – A practical guide to service provision. 2019 (revised 2022).

Association of Chaplaincy in General Practice. Spiritual Care Competences Framework for Primary Care Chaplains. 2021.

British Association of Perinatal Medicine. Perinatal Management of Extreme Preterm Birth – A Framework for Practice. 2019.

British Association of Perinatal Medicine. Pre-hospital management of the baby born at extreme preterm gestation – A Framework for Practice. 2022.

Johnson J, Arezina J, Tomlin L and others. ‘UK consensus guidelines for the delivery of unexpected news in obstetric ultrasound: the ASCKS framework.’ Ultrasound 2020: volume 28, issue 4, pages 235-245.

Law Commission of England and Wales (No 411) and Scottish Law Commission (No 262), Building families through surrogacy: a new law - Volume II: Full Report. 2023.

MBRRACE-UK. National clinical guidance for the determination of signs of life following spontaneous birth before 24+0 weeks of gestation where, following discussion with the parents, active survival-focused care is not appropriate. 2020.

Memtsa M, Goodhart V, Ambler G, Brocklehurst P, Keeney E, Silverio S and others. ‘Variations in the organisation of and outcomes from Early Pregnancy Assessment Units: the VESPA mixed-methods study.’ Health Services and Delivery Research 2020: volume 8, issue 46.

Together for Short Lives. Perinatal Pathway for Babies with Palliative Care Needs. 2009 (revised 2017).