In July, alongside Bliss, we launched a new booklet designed for families whose baby’s future is uncertain. We hope that it will help parents and carers through this time and help them to think about the best care for their baby and the support they need as a family.
This information for parents is complemented by newly-updated professional guidelines in the BAPM Framework for Practice: Recognising uncertainty: an integrated framework for palliative care in perinatal medicine, developed with the Association of Paediatric Palliative Medicine. Together, these parallel resources for parents and health professionals support an integrated approach in this most sensitive and challenging area of healthcare.
In this blog, Alex Mancini, National Lead Nurse for Neonatal Palliative Care, leading the National Neonatal Palliative Care Programme introduces the resources and explains why embracing a fully holistic model of palliative care has important benefits for babies and families, as well as the healthcare professionals caring for them.
On 18 July I was invited to speak at the London Neonatal Network Conference which gave me an opportunity to reflect on how much Neonatal Palliative Care has developed as a speciality in its own right, but also there’s now an increased awareness of the additional enhanced support which is available for babies and their families.
I shared my own very personal experience of caring for baby Bowen Tyrell and his family who were the inspiration for writing the textbook Neonatal Palliative Care for Nurses, developing care pathways and guidance, ensuring the very best high quality care is given to all babies and their families equitably. Bowen died at three months old and would have been 24 years old later this year – and his legacy lives on.
I’m delighted to share, that following true partnership and collaboration between Together for Short Lives and Bliss plus the BAPM and the APPM, last week saw the launch of two significant publications which aim to support teams caring for babies and their families with an uncertain future. Caring for your baby when the future is uncertain developed by Together for Short Lives and Bliss, is an information booklet for parents about perinatal palliative care and is a resource for parents who have had conversations with their care team either during pregnancy or after birth, that their baby’s future is uncertain, guiding them through this extremely difficult time and helping think about the best care for their baby and the support they need as a family. It aims to provide parents with information and sources of support when there is uncertainty about their baby’s future and the need for a palliative care approach.
At the beginning of July, the BAPM, partnered with the APPM (Association for Paediatric Palliative Medicine) and developed with parents and an expert working group to published Recognising Uncertainty: An integrated framework for palliative care in perinatal medicine. In the 14 years since the last version of this framework, increasingly there’s been recognition that embracing a fully holistic and interdisciplinary model of palliative care has important benefits for babies and families, as well as the healthcare professionals caring for them. Key messages emphasised throughout the framework are that palliative care is not synonymous with end of life care, but rather represents an active and total approach to care which can be provided from the point of diagnosis and alongside treatments directed at survival.
The framework highlights how palliative care is very much ‘everyone’s business’ and can and should be provided by existing perinatal teams with support from community and specialist services where required.
There is further guidance on helping teams recognise which babies may benefit from palliative, moving away from a list of specific conditions and categories, recognising complexity and uncertainty, and suggests three different ways of doing so: 1) the diagnostic approach 2) multidisciplinary concern 3) the surprise question. The new BAPM framework is clear on the need for new leadership roles to coordinate, train and support regions to deliver care and respond to national recommendations from national reports and inquiries. We believe these roles are vital for quality, safety, family-centred care and delivery.
In my role as the National Lead Nurse for Neonatal Palliative care, I lead The National Neonatal Palliative Care Programme supporting clinical teams across the country to deliver crucial care by empowering the workforce with the knowledge and skills they need to improve the experience and outcomes for families during a time of crisis, specifically when a baby has multiple complex health needs with an uncertain future. In recent decades, increased survival of the most complex and preterm babies has led to rising demands on neonatal services, including palliative care. The learning package has been endorsed by the Neonatal Nurses Association, Together for Short Lives, Bliss and British Association of Perinatal Medicine and we have now delivered this programme to four Neonatal ODNs (North West, Yorkshire and Humber, South West and London) with 93% of participants reporting that the training increased their confidence in caring for babies with complex and palliative care needs and their families.
We will continue to roll out the programme to the remaining Neonatal Networks. I’m currently working with the Northern, Thames Valley and Wessex and Kent, Surrey and Sussex teams and grow and support the network of clinical teams to provide care for their patients. 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 Programme is access to an e-learning module ‘Introduction to Neonatal Palliative Care’ and the newly launched ‘ENHANCED’ modules.
Having the right training and local networks in place to provide the best care is vital to ensure equity of care for families and a trained, supported and resilient workforce.
For the past ten years the National Neonatal Palliative Care Programme have been working to develop a set of resources, training materials and a national clinical network to support the workforce to better care for babies and their families.
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, 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. Please contact me for further details: a.mancini@nhs.net
I’m committed to supporting you in your roles in developing palliative and bereavement care within each neonatal unit across intensive care, local units and special care and the community, helping to connect with others in similar roles.
Alex Mancini
One of the ways of doing this is for us to join together and grow as a community, sharing practices, experiences and supporting each other, which we currently do as part of the National Palliative & Bereavement Care Neonatal Nurses’ Network. I also chair the National Children’s Palliative Care & Hospice Special Interest Group, and we will be joining the two national networks together for our first virtual meeting in July 2024.
Furthermore, the Neonatal Nurses Association (NNA) support and host the national Neonatal Palliative Care Special Interest Group, an opportunity to come together, share ideas, peer support and have an expert speaker join the session. All previous recordings and further information can be found online. Our next meeting will be in October, date to be confirmed 10am-11.30am.
We are committed to working together to realise that vision, and recently we have witnessed momentous and considerable advancement. It remains possible to realise our shared goals with robust working relationships and collaboration which are essential to developing equitable Neonatal Palliative Care services for families. It’s vital that we continue to encourage and gently guide honest and clear conversations with families about what is important to them, at the earliest opportunity possible.
Neonatal Palliative Care is not an ‘added extra’; it should be embedded into routine neonatal care enabling families to share time and experiences together. Where new life and the uncertainty of death balance alongside each other, wherever possible, families need to be supported and enabled to have choices and ‘be’ together to do the things which are important for them, wherever that may be.
Alex Mancini