Alex Mancini is a senior neonatal nurse with over 21 years’ experience, and is the Pan-London Lead Nurse for Neonatal Palliative Care, the first regional role within the UK. Alex has received a Child Bereavement UK 21 Champions Award in recognition of her transformational work in the field of neonatal care in developing the skills and confidence of health professionals, thereby improving the neonatal experience for many thousands of families.

1_4o-alex-mancini-250x188In 1999 I attended my first Child Bereavement UK Study Day. As a junior neonatal nurse I recognised that I needed guidance around how to support families when a baby has died. I could never have dreamed that years later, I would have the privilege not only of working with Child Bereavement UK but also of being able to support my own colleagues to have the confidence to care for families at such a difficult time on the neonatal intensive care unit. Over the years, I have been privileged to have been part of the best possible experience for families – the birth of their child. However for some families, this time is devastating, bringing a level of uncertainty and sadness.

Never knowing what to expect is the key challenge faced by neonatal nurses. Babies are born extremely prematurely, with life-limiting conditions, or they have traumatic deliveries, all of which requires a level of neonatal intensive care support. It can be very challenging and difficult knowing what to say to parents, and communicating effectively. Being a neonatal nurse requires complex communication skills, and Child Bereavement UK gives phenomenal training and support in being able to do just that.

The support and knowledge I gained at that very first Study Day enhanced my skills, which in turn increased my confidence in caring for babies and supporting their families, and over the last 15 years I have been able to share my learning with my colleagues and develop and support them. In my daily work, I often refer people to the Information Sheets on CBUK’s website – they are a fantastic resource for professionals with lots of information about grief, some of which is still applicable when a baby doesn’t die.

With the support of Child Bereavement UK I have been able to devise specific training sessions for other health professionals, as well as signposting them to CBUK resources. Jointly, we have been able to reach many professionals with individualised training to increase their knowledge, and also to increase their confidence when caring for a family whose baby is not expected to survive. Learning from parents’ experiences underpins Child Bereavement UK’s work; personally I have found this invaluable.

Neonatal nurses don’t routinely get formal bereavement training. In recent years, some training has been provided as part of postgraduate courses, however this is not consistent. For the last 5 years I have worked alongside CBUK in developing and organising the annual National Neonatal Palliative and End of Life Care conference, which has been attended by around 600 people; I also co-facilitate a Child Bereavement UK workshop, The Challenges of Supporting Parents through the Neonatal Experience, which we have now taken nationwide. The training we have given has made a real difference – we have had fantastic evaluations from both the workshops and conferences. We have also been able to forge links with other organisations in the field, such as Bliss and Together for Short Lives, and are now working on strengthening relationships with local children’s hospices.

Families should be receiving the highest quality support from staff. When neonatal staff receive training from Child Bereavement UK it increases their confidence in communicating and in knowing how best to support families. CBUK’s training also focuses on caring for the carers themselves; if staff feel they are getting the support they need, they will then be able to support families more effectively. Professionals who feel supported can, in turn, support families to the best of their ability.

I would completely recommend CBUK’s training. Not only is it an opportunity to meet with other professionals and share experiences, but also to learn new strategies and hear directly from parents about their experiences. It also validates the excellent support professionals are already giving, and through sharing parents’ experiences, helps society understand and appreciate what families go through.

I feel absolutely overwhelmed and very humbled to be nominated as a CBUK Champion. 15 years ago, I was fascinated and inspired by what I learnt at the first Study Day I attended. Years later, Child Bereavement UK continues to grow and has supported so many families and professionals. I am still inspired by what I hear at their Study Days, but most importantly when families share their experiences with us.