The Pregnancy Loss Review is a long-awaited independent report looking into the care and support available to women and parents who lose a baby before 24 weeks of pregnancy. Its initial focus was to consider the impact of the way baby deaths are treated before 24 weeks and to look at the potential to officially register these losses, plus ways to improve families’ experiences during their bereavement.
Currently, 24 weeks defines a significant change in the way a baby loss is officially recorded. All data on miscarriage and baby loss before 24 weeks is currently estimated because unlike stillbirths and neonatal deaths, there is no official way to record them on a national scale. This makes it difficult to truly understand the scale of miscarriage and early pregnancy loss, and impossible to set national ambitions to reduce this heartbreak.
However, while this data issue has been a major part of the heart of Tommy’s campaigning, it is far from the only issue with the UK’s current care for those who lose a baby before 24 weeks. In consultation with families, charities and healthcare professionals, the Pregnancy Loss Review also considered changes in miscarriage care. This coincided with research breakthroughs from Tommy’s National Centre for Miscarriage Research shared in a world-first research series in the international Lancet scientific journal looking at the impact, causes and treatments for miscarriage, alongside suggested improvements to miscarriage care which have the potential to save babies’ lives. You can find out more about Tommy’s groundbreaking Lancet Miscarriage Matters series here.
The review was commissioned by the Government and the Department of Health and Social Care. It was co-chaired by Zoe Clark-Coates MBE, Founder and CEO of The Mariposa Trust, and Samantha Collinge, Lead Bereavement Midwife at the George Eliot Hospital NHS Trust.
Their review sought to highlight the areas for improvement and set out key recommendations the Government should consider to better the experience and care received by those who lose a baby before 24 weeks. Though any loss at this stage is sometimes broadly referred to as a miscarriage, other types of losses such as ectopic and molar pregnancy are explored in this report as well as the difference in challenges posed by the current way early and later-stage miscarriages are often dealt with.
Input for the review was gathered from healthcare professionals and individuals who have experienced baby loss. The review involved consultations, focus groups, and workshops with individuals with lived experience, bereavement charities, healthcare professionals, and government organisations.
Visits to healthcare settings were also made to observe current practices, including a visit to Tommy’s National Centre for Miscarriage Research where our team of leading experts were able to discuss our Graded Model of Care which is designed to transform miscarriage care.
The recommendations listed in the review are said to make sure that all trusts and organisations offer consistent, compassionate care. The review emphasises that everyone should be able to expect a system responsive to individual needs where they feel supported and cared for. We emphasise the importance of this at Tommy’s because we know firsthand the devastating and heartbreaking impact baby loss can have and the need to make pregnancy and birth safe for everyone.
Included are both recommendations that can be carried out right away as well as many that will involve a longer-term process and commitment. We are eager to work with the government to see their continued support and investment in the necessary infrastructure, workforce, and resources for the meaningful changes that these recommendations will help oversee.
Overall, the review gives 73 recommendations focused on the following areas:
• Education, training, and information
• Service provision and access
• Quality of care
• Bereavement care and support
• Patient records, IT, and data
• The workplace
Some of the key recommendations that we have noted are:
• Including baby loss education in school's RHSE curriculums.
• Respecting and prioritising the choices and voices of all individuals, regardless of background, throughout their baby loss journey.
• Developing clear protocols for compassionate 24/7 clinical care during and after baby loss.
• Adopting Tommy’s graded model of miscarriage care that supports understanding the cause of the loss and provides care plans for subsequent pregnancies.
• Offering consistent and clear information and support for parents' physical and mental health needs, including mandatory multidisciplinary bereavement and care training for all staff in baby loss services.
• Ensuring access to mental health services for those experiencing baby loss and offering choices for creating memories and marking the loss.
• Considering the sensitive collection, handling, storage and testing of remains.
• Introducing optional baby loss certificates for pregnancy and baby loss pre-24 weeks, which can be backdated to cover historic losses.
One area which was noticeably missing was data collection. Both the government and the reviewers acknowledged the challenges in this area. But these challenges should not be an excuse for inaction. We continue to strongly urge for all miscarriages to be recorded so that the scale of the problem is no longer hidden, national targets for reduction can be set and the impact of interventions can be measured.
To see Tommy’s full response to the review, click here.
Tommy’s will be providing more in-depth information over the following days and weeks about these recommendations, the Government’s response to them, and what it all means for you.
Read the full Pregnancy Loss Review here or access the Executive Summary here.