
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

I’m Lora Alexander, one of the Quality Improvement coaches in a busy Level 3 NICU. QI is all about understanding problems, thinking of solutions, implementing ideas and analysing the results.
My name is Adedoyin Yissau, also known as Dee. I am the Education and Workforce Lead for the London Operational Delivery Network. I came into post as a Network Educator in 2019 and have since developed nursing education region wide, with the current focus on developing a nursing career pathway for London.
Neonatal Network Nurse Educator
My name is Dr. Julia Petty, and I am a nurse lecturer specialising in children’s nursing with a particular interest in neonatal care. My nursing career in paediatric and neonatal clinical nursing practice began after a BSc Hons degree in Psychology at Warwick University, when I moved to Great Ormond Street Hospital, London. Here, I trained in children’s and adult nursing before working there for many years in children’s and neonatal surgical care. I then gained my neonatal nursing qualification at St George’s NHS Trust London and worked at the Whittington NHS Trust NICU before moving back to Great Ormond Street for a senior education role on NICU where I worked until 2001. I then worked as Senior Lecturer at City University, London for 12 years leading the neonatal nursing education portfolio. I studied for a MSc, a PGCE and MA in academic practice during this time, In 2013, I moved to the University of Hertfordshire where my role is Associate Professor (learning and teaching) and Senior lecturer child nursing. I teach on the BSc Hons nursing and master’s degree programmes including leadership of modules, face-to-face/online teaching, assessing and supervision of students at all levels up to doctorate level. I am also research active and have completed a Doctorate in Education. As a nurse, educator and post-doctorate researcher, my interests focus on parents’ premature birth experiences, supporting parents in the transition home from NICU, exploring communication needs of neonates and their carers and studying the educational value of digital storytelling. This combination and variety of roles enriches my working life and brings together my experience as a child / neonatal nurse, educator and researcher. My role and related activities enable me to engage in both education and research while supporting students on their nursing career and education pathway, which is a privilege to be part of.
Hello my name is Claire Richards and I’m the Lead Nurse for the Wales Maternity and Neonatal Strategic Network. This covers nursing leadership but also Neonatal transport. I also have a clinical honorary contract in one Health Board.
Hello, my name is Kim Edwards, and I am a Neonatal Nurse. I am currently the Lead Nurse and Workforce, Education Lead for the Thames Valley and Wessex Neonatal Operational Delivery Network (ODN)
Hello, my name is Jean and I am a registered children’s nurse with 27 years experience. I qualified with a DipHE after struggling academically due to dyslexia. Over my career I have worked mainly in PICU, NICU and children’s cardiac critical care. I am dual qualified in speciality (QIS) for both Neonatal and Paediatrics. The QIS program is a post graduate modular course completed at level 6/7. To be considered QIS you must successfully complete 4 separate modules, each have an academic and practical component. Only on completion of the QIS course can you apply for a band 6 role. In addition to the above qualifications it is expected you would have several years proven experience in speciality at Band 6 and 7 prior to applying for a Matron’s role.
My name is Lisa Baker, I’m a Ward Manager on a Level 2 Special Care Baby Unit in South Wales and I’ve been in this role since 2020.
Hello, my name is Wesell, and I am currently a trainee Advanced Neonatal Nurse Practitioner (ANNP) at Great Western Hospital, which is a Local Neonatal Unit (LNU). Prior to this, I gained substantial experience in a tertiary neonatal unit where I completed my QIS course at master’s level. This course, alongside my role as a senior nurse, provided me with the expertise required to develop my career further in neonatal care.
My name is Hannah Wells, and I am a Neonatal Surgical Clinical Nurse Specialist (CNS).
Hi, I am Amanda and work as the Neonatal Infant Feeding Coordinator for a NICU and a SCBU within one service. While the role is not standardised, many neonatal units now have dedicated posts.
Hello, my name is Daniela Machado, and I am proud to be a Developmental Care Specialist/Lead Nurse and a sister/charge nurse, working across two different trusts. I am originally from Porto, Portugal, and have spent 14 years building my nursing career in the UK. My role involves applying and advancing neuroprotective/developmental care practices for our preterm and neonatal patients/families.
Hello! I am Renjita Raju , a Neonatal Junior Sister working in London. After completing my BSc nursing degree in India, I moved to UK, and completed NMC OSCE to get registered and QIS course to become specialised in neonatal care. I recently qualified as an NLS instructor with the support from NNA scholarship programme. My role involves caring for premature and critically ill newborns, ensuring their safety and health with a highly collaborative multidisciplinary team. I also teach in NLS courses as an instructor following my passion in neonatal resuscitation. I love witnessing infants grow stronger each day and supporting their families through this journey. I’m grateful for the opportunity to provide meaningful compassionate care to the tiniest, most vulnerable patients.