We must listen to parents after their darkest hour

NHS England’s Care Lead for Maternity marks Baby Loss Awareness Week 2017 and discusses what needs to improve on bereavement care:

It’s important to start by saying that work across the system continues to prevent stillbirth and loss in pregnancy wherever possible.

Sadly, however, bereavement will occur and improving care when it happens deserves attention.

It’s something I feel passionately about and, for me it’s personal as well as professional.

I’ve stood in a churchyard with friends and watched 39 balloons drift into the sky recognising the number of weeks of pregnancy prior to a beautiful baby boy who was stillborn entering the world; sat with a friend hearing how he valued the time he held his niece who had also been born stillborn, and heard the frustration of a mother who was excluded from general maternity survey processes when her son had died.

What’s clear is all of these families and so many others have important insights into care and experience, and that these were never heard by professionals because consistent processes didn’t exist to seek them out.

The 2014 National Perinatal Epidemiology Unit (NPEU), ‘Listening to Parents after Stillbirth or the Death of their Baby’ study highlighted that we need to listen to parents and to monitor their needs and experiences of care and act upon that feedback.

The Maternity Transformation Programme; Better Births offered us the opportunity to develop the Maternity Bereavement Experience Measure (MBEM) – a questionnaire to address this gap.

It has been developed with bereaved families to provide a more standardised approach to seeking out experiences of pregnancy loss and, in a sensitive manner, addresses themes identified by families that really matter to them during this time. Work is led by the London Maternity Clinical Network, SANDs, the Stillbirth and Neonatal Death Charity, a specialist bereavement midwife from Imperial Healthcare NHS Trust and NHS England.

It can be used face to face, on paper, online, in whatever way suits the family best, making it accessible for all. Trusts can add their logo and personalise the supporting letter included in the resource.

The resource also provides information to health care professionals, providers and commissioners on how to gather feedback when bereavement has occurred during or shortly after pregnancy and, importantly, suggests how the feedback gathered can be used to drive improvement.

We want all those involved in maternity care including maternity teams, patient experience teams, Patient Advice and Liaison Services (PALS) as well as organisations such as Healthwatch, Maternity Voices Partnerships and local charities to use this to help seek out experiences in a compassionate and sensitive manner so that families can see the changes in services they have told us are needed.

Ensuring all families have access to a bereavement suite, a professional lead for bereavement care and access to ongoing psychological support are consistent ‘asks’ from families and we need to ensure are in place across the system.

Another important aspect of care is how we as staff behave and communicate when a loss in pregnancy happens. Families repeatedly reflect: ‘It’s the little things we remember’ – the kindness of a porter on a journey to a scan, or the way information was conveyed at such a traumatic time. These are the elements families remember in the days and years ahead.

The Miscarriage Association, with support from NHS England, has developed a range of educational resources that can support staff education in this area. The films they have developed can be included in continuing professional development programmes so we can all reflect on the impact of our communications when loss happens.

I believe we have two jobs in health care: the delivery of care and also improvement. The Maternity Bereavement Experience Measure (MBEM) and educational resources from the Miscarriage Association are just two of the many ways we can keep working to improve care when baby loss occurs.

My challenge to you in Baby Loss Awareness week is will you share the MBEM and think about how you can implement it in your area and to watch the films from the Miscarriage Association and share with your teams?

I’m working to improve Experiences of Care, will you join me?

Kath Evans

Kath Evans, RGN, RSCN, MSc (Nursing), PG Dip (Education), BSc (Hons), PG Dip (Management), Institute of Leadership and Management (ILM) Accredited Coach, is NHS England’s Experience of Care Lead – Maternity, Infants, Children and Young People.

She is a registered general and children’s nurse and her career has included clinical, educational, managerial and service improvement roles.

She is committed to ensuring the voices of children, young people, families/carers and maternity service users are heard in their care and in the design, delivery and commissioning of services.

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