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Zahra Famili

Award Received: 
The Norah Faith Coniam Award
Project: 
co-producing a Memory Wallet for families experiencing pregnancy loss in England
Year awarded: 
2024

This report outlines the process and outcomes of co-producing a "Memory Wallet" for families in England who have experienced pregnancy loss or death of a baby. 

The shattering loss of a pregnancy or death of a baby has significant long-term impacts on the health and wellbeing of parents, their relationships and wider community.

Unfortunately, we know that the support and information women, birthing people and their partners receive after experiencing a pregnancy loss or death of a baby is not equal.

The most recent MBRRACE report (2023) highlights this, “whilst there may be subtle differences in how bereavement care is delivered, based upon gestation and the arrangements within a local maternity unit, there is a goal within the UK to offer the same level and quality of care to all parents who experience perinatal loss”.

Whilst attending the “Rainbow pregnancy” study day in Manchester we were able to talk to Heidi from MAMA Academy about the possibility of co-producing a wallet similar to the pregnancy Wellbeing Wallets they currently supply to expectant parents within 100 NHS Trusts in England. The development of this tool was based on collaborative input from individuals with lived experience of pregnancy loss, bereavement midwives, maternal mental health midwives and emergency services.

The Memory Wallet is designed to provide comprehensive information and resources that support both the physical and emotional recovery of families affected by pregnancy loss, ensuring equitable access to essential support services.

The Memory Wallet, which is also available in a digital, translatable format, aligns with the National Bereavement Care Pathway (NBCP) and the findings from the Pregnancy Loss Review, reinforcing a commitment to providing high-quality, compassionate care for families undergoing loss at any stage of pregnancy.

Co-Production Process

The Memory Wallet was co-produced through a participatory approach, actively engaging families with lived experience of pregnancy loss.

Their insights were collected through surveys, interviews, and recurrent evaluations. These consultations guided the creation of content that resonated deeply with the needs of bereaved families. Participants emphasised the need for sensitive, practical information that could be accessed in a way that felt manageable during emotionally overwhelming times.

Key feedback from families and stakeholders included:

• The desire for clear, supportive information on physical recovery (e.g., post-pregnancy body changes, managing pain).

• Resources on emotional recovery, including coping mechanisms, grief support, and navigating the complex emotions after a loss.

• Guidance on how to access further support, both locally and nationally, with specific directions for bereavement services, mental health professionals, and pregnancy loss support groups.

• Clear, compassionate advice on communicating with family and friends, addressing the challenges of sharing news about the loss with loved ones.

• Information on investigations (such as understanding what tests might be offered after recurrent loss) to provide clarity and reassurance about next steps in a sensitive manner.

Content and Structure of the Memory Wallet

The Memory Wallet is carefully structured to avoid overwhelming families with too much information at once. It features drop-down menus, allowing users to engage with each section at their own pace, based on their readiness to digest information.

Some of the included sections include:
• Physical Recovery: Outlines what to expect physically after pregnancy loss (at any stage) and steps for physical healing. It also includes clarity about whom to call and where to go when in pain and bleeding in line with the pregnancy loss review

• Emotional Recovery: Provides emotional support strategies and resources for grief counselling and mental health support.

• Accessing Support: Offers directories of local bereavement services, mental health organizations, and early pregnancy clinics throughout England.

• Investigations and Tests: Explains the processes involved in medical investigations after recurrent losses, giving families clarity and guidance.

• Memory Making: 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.

• How to Tell Your Family: Provides sensitive advice on how to communicate the pregnancy loss to family and friends, acknowledging the emotional difficulty of this task.

Digital and Multilingual Accessibility

To ensure accessibility for all, the Memory Wallet is hosted on a website that can be translated into multiple languages, ensuring that individuals from diverse backgrounds have access to the same high-quality resources. This digital format allows families to access information from anywhere, whether at home, in a GP surgery, in A&E, or in maternity and early pregnancy units. The translatable functionality supports the diverse population of England, ensuring that language barriers for those who can read in their native language do not prevent anyone from receiving the care and information they need.

Directory of Support Services 

A key feature of the Memory Wallet is its comprehensive directory of bereavement support, mental health services, and early pregnancy clinics across England. This directory is regularly updated and includes contact details for: 

• Bereavement support organisations: National and local services that provide emotional and practical support during and after pregnancy loss.

• Mental health support: Including counselling services, maternal mental health services and peer support groups specialising in pregnancy loss and grief.

• Early pregnancy clinics: A list of clinics that offer specialist care for women experiencing complications in early pregnancy, ensuring families know where to access help if they experience future pregnancies. Including if they can turn up or need to be referred.

Alignment with National Bereavement Care Pathway and Pregnancy Loss Review

The development of the Memory Wallet is closely aligned with the National Bereavement Care Pathway (NBCP), which aims to improve the quality and consistency of care for families following pregnancy loss. By offering standardised information and easy access to support services, the Memory Wallet helps healthcare providers meet the NBCP's goals of providing compassionate, inclusive
care.

Additionally, the Memory Wallet reflects key recommendations from the Pregnancy Loss Review, which emphasised the need for clear, accessible information and emotional support for families experiencing any type of pregnancy loss.

The Memory Wallet ensures that families, regardless of the type of loss or where they are in England, can access the same level of support and information, addressing the review’s focus on equitable access to care.

Ensuring Equity of Access

One of the fundamental principles behind the Memory Wallet is to ensure equity of access to information and support, regardless of the type of loss or the family’s location. The resources are designed to support those experiencing early miscarriage, late miscarriage, stillbirth, or termination for medical reasons, among other forms of loss.

By making the Memory Wallet available across healthcare settings—from GP surgeries and A&E to early pregnancy units and maternity wards—families at every stage of their journey have access to the same compassionate and consistent care.

This tool can be utilised by healthcare professionals to provide families with immediate, accessible support in the event of a loss, ensuring that no one is left without guidance or information at such a vulnerable time. The distinctive colour of the Memory Wallet, combined with the inclusion of the baby loss awareness ribbon, makes it easily recognisable to staff. This allows healthcare
professionals to identify families who have experienced pregnancy loss immediately and provide appropriate, trauma-informed care.

To support this, we have prepared detailed information alongside the wallets to ensure that all staff in the units where they are used are fully aware of their significance.

This is especially important in today’s digital world, where staff members—such as sonographers—may not always have access to the same systems. The visible cue of the Memory Wallet ensures
that compassionate care can be offered promptly, regardless of system limitations. 

Conclusion

The co-produced Memory Wallet is a vital resource that responds directly to the needs of families who have experienced pregnancy loss. It offers comprehensive, compassionate information that is easy to access and digest, with features that promote both physical and emotional recovery.

The inclusion of a digital, translatable platform and a directory of local support services ensures that the Memory Wallet is accessible to all families, regardless of their location or circumstances.

By aligning with the National Bereavement Care Pathway and the Pregnancy Loss Review, the Memory Wallet supports national standards for bereavement care, ensuring that every family, regardless of their type of pregnancy loss, can access the support and information they deserve. In providing equitable, inclusive, and accessible support, the Memory Wallet is a critical tool for both families and healthcare professionals, contributing to a more compassionate and informed approach to pregnancy loss care across England.

We were excited to announce the launch of the Memory Wallets on Wednesday, November 13th, where we had almost 200 people registered. Boxes have been ordered and we are so pleased to have these for families from February 2025.

We extend our heartfelt thanks to Iolanthe for their generous financial support in awarding the Norah Faith Coniam Award to our project, making this valuable resource a reality, as there was a huge amount of web design involved.

A special thank you also goes to the families who graciously shared their insights and suggestions, ensuring the Memory Wallet truly meets the needs of those experiencing pregnancy loss.

Lastly to Heidi Eldridge from MAMA Academy, who supported my dream of having this wallet for families, with a never ending “yes, let’s do it!” – even after the 237th edit. We are so lucky to know and work with her.