Hi I am Jo, and I have been a neonatal nurse for 33 years. In 2022 I was honoured to be awarded Neonatal Nurse of the Year by the NNA. I see this award as very much about all the teams I have worked with over the years. When the NNA asked me if I could write a blog for their new website, my first thought was “Can I write one?” I am no author and any writing I have done has been for assignments, but I am giving a blog a go and I hope that what I write is helpful. I have broken it down into 2 short blogs both focusing on different area of family support within neonatal care. The first part I will focus on palliative care and bereavement support.
Anyone who knows me will know I am fond of a variety of sports. I have found sporting analogies a helpful way of viewing different elements of healthcare services. So please excuse me if I follow that theme and throw in a few sporting analogies in these 2 short blogs of my thoughts about differing elements of family support in neonatal care.
I recently spoke to student nurses about neonatal palliative care and bereavement support. At the end of the session, one of the student nurses asked me what she would need to do to have a role like mine. It was one of the highlights of my working year to hear someone embarking on their nursing career wanting to work in a neonatal palliative care role, an area of neonatal care which is developing but remains under resourced. Just like any sporting coach, I gave her a few pointers and tips on how to achieve her end goal. I remember being in the same position as a newly qualified nurse working on a neonatal unit. I quickly realised family and bereavement support was an area I wanted to develop skills in to enable the enhancement of these areas of care within the neonatal unit I worked in. As with any new player on a team, I had a lot to learn and with the support of my manager and experienced colleagues sharing their knowledge and skills I embarked on my neonatal nursing journey. Many (too many to mention) years later, I now find myself being one of the senior staff sharing knowledge and experience with more junior colleagues and student nurses. Rather like being a sporting coach, it is a privileged role to be in, to assist staff in acquiring knowledge and skills to develop services for families.
Sometimes we need to look outside of our direct team to acquire the necessary skills required for particular areas of service development. For example, to develop a bereavement support service for families myself and a colleague undertook training with Cruse UK, which involved study and then working with bereaved people who accessed support through Cruse. The knowledge and experience gained through this helped give us a greater understanding in working with families bereaved on the neonatal unit. We were then able to offer bereavement support tailored to each individual parent’s needs. Some parents have one or two home visits in the first weeks after their loss and for others the support may be for months or years and through subsequent pregnancies. As one mum said to me, it is knowing that there is someone you can talk to about your baby when other people expect you to have moved on.
I feel very privileged to have been able to sit with parents as they talk about their baby. Like all bereavement supporters, as much as I might want to, I can’t change their loss but maybe I can help them feel listened to and give them the chance to share which in turn can help them in processing their grief. We need to aim for all parents bereaved on a neonatal unit to have the offer of on-going bereavement support.
Neonatal palliative care like other aspects of neonatal care, relies on good team working with colleagues from different teams outside of the neonatal unit. This may include other hospital teams such as fetal medicine, bereavement midwife and chaplaincy teams, as well as community and primary care teams such as children’s community nurse teams, children’s palliative care teams, children’s hospices, health visitors and GPs amongst others.
To assist in developing palliative care services on the neonatal unit myself and 2 colleagues completed the Enhancing Practice in Paediatric Palliative Care university module. Yes, the title is paediatric not neonatal but so much of what was taught in this included neonatal care or was transferrable to neonates. Following this we then formed links with fetal medicine, the bereavement midwife and neonatal consultants in seeing families antenatally. Forming links with our local children’s hospice has also been beneficial in offering choices of care to families. As the 3 of us all work within the neonatal outreach team we have been able to offer palliative care support to families at home, working closely with children’s hospice and other community teams.
There is so much fabulous work being done by many different staff throughout the country in developing and enhancing neonatal palliative care services through research and shared learning. In my role with the South West Neonatal Network I am able to work with different staff groups in the neonatal units throughout the network and see many examples of good practice. A sports academy enables athletes to learn and train together and there are many forums which enable staff to do the same, sharing good and innovative practice. This can be at a local, regional or national level. An example of this is the National Neonatal Palliative Care Project being led by Alex Mancini. I am privileged to work with Alex within the South West as part of this project which enables shared learning between all staff who might work with families in their perinatal palliative care journey, always keeping the family at the centre of the learning and practice.