This Baby Loss Awareness Week we hear from Alex Mancini, a senior neonatal nurse who is committed to the development of palliative and bereavement care for babies and their families. Read her blog below to find out more about how she has raising awareness and developing care provision across the UK.
Hi everyone, I’m Alex Mancini, senior neonatal nurse. Previously, I was the Matron on the Neonatal Intensive Care Unit at Chelsea & Westminster Neonatal Unit for many years before I was fortunate enough to develop my current role as National Lead Nurse for Neonatal Palliative Care.
I’ve always been extremely committed to improving palliative and bereavement care for babies, their parents and wider family, supporting their choices and what’s important to them. This has led me to raising awareness, continually learning from others and developing training and education programmes nationally and internationally. I’m also fiercely focused on supporting neonatal nurses and the wider team.
The National Neonatal Palliative Care Project led by myself, started as a Regional project in 2015 across the London ODN, developing a model of education and training, building on existing palliative care provision, and developing/progressing/evolving nationally. The project is tailored specifically for 3 Neonatal ODNs: North West, South West and Yorkshire & Humber, offering access to free training (Introduction to Neonatal Palliative Care), supporting & assisting neonatal teams.
An integral element/component of this training programme is to offer dedicated monthly sessions on specific topics within Neonatal Palliative Care, known as ‘Enhanced’ sessions, with a variety of expert speakers. Part of this National Neonatal Palliative Care Project is access to an e-learning module ‘Introduction to Neonatal Palliative Care’.
Additional to these targeted sessions/opportunities are the national Monthly Monday sessions, again with a variety of relevant topics related to our textbook, with parents sharing their experiences and teams presenting their work or case studies. Access is via an invited email and open to anyone caring for babies and their families across all professional disciplines and specialties
In the 75th year of the existence of the NHS, it’s an opportune time for reflection on the advancement and development of Neonatal Palliative Care in it’s own right and recognised/established specialty.
The concept and specialty of Neonatal Palliative Care has grown exponentially in recent years, and I’m delighted to share with you some key developments in building a neonatal palliative care community.
There are some really exciting developments in Neonatal Palliative Care and I’m keen/committed to supporting you in your roles in developing palliative & bereavement care within each unit across intensive care, local units and special care, and helping to connect with others in similar roles. A few of the latest developments include:
- Neonatal professionals joining together and growing as a community, sharing practices, experiences and supporting each other, which we currently do as part of the National Palliative & Bereavement Care Neonatal Nurses email support group. This group was developed to mirror the existing National Bereavement Midwives Forum led by Jane Scott, Lead Senior Bereavement Midwife. We had our first joint in person meeting earlier this year in March, with the second meeting in September.
- The development of a national group of neonatal nurses who have a role in providing care for families on a neonatal unit when their baby isn’t expected to survive or who has died, has been several years in the making. There is no universal specialist role for nurses providing this highly skilled and sensitive care, often they’re balancing their clinical or managerial roles and caring for parents. Sharing information and most importantly providing peer support. If you’re not already part of this group, please contact me directly, and I’ll add you.
- As Co-Chair of the BAPM working group reviewing the current ‘Palliative Care-A Framework for clinical practice in perinatal medicine (2010) I’m privileged to be working with Dr Edile Murdoch collaborating with representation from a wide multi-disciplinary team, as well as a core group APPM, Bliss, the Neonatal Nurses Association, Together for Short Lives, and Sands. This new framework will serve as a practical document to support perinatal teams in initiating conversations with parents at the earliest opportunity on uncertainty, focusing on parallel planning and a palliative care approach. We aim to have this document out for wider consultation before the end of the year. Additionally, we have the first neonatal palliative care focused data available which will help us inform practice and develop services. Dr Cheryl Battersby and her team share their article Data-driven approach to understanding neonatal palliative care needs in England and Wales: a population-based study 2015–2020.
- Very excitingly, we have a brand new Neonatal Palliative Care Special Interest Group supported & hosted by the NNA, with our first virtual meeting on Tuesday 31st October 10am-11.30am. Click here for more information. Only you know the challenges and positive aspects/elements you face daily and how best to support each other.
- Finally, a larger piece of work is collaborating with ODN leads establishing key neonatal nursing roles as part of robust Workforce Planning. These Specialist/Quality Roles are essential/vital/crucial to each neonatal unit regardless of designation and must be established and substantive posts. I’ll keep you updated on progress.
Looking forward to meeting you all at the NNA Special Interest Group on Tuesday 31st October 10am-11.30am.
Take care Alex
- [email protected]
- @NeoPallCare
- @mancini_smith