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  • Dr Jo Griffiths

Overview of the network conference: Early years in paediatric palliative care : Challenges and Oppor


In October 2017, a successful conference focusing on the needs of infants and young children with life limiting or life threatening conditions, was hosted by the All Wales Paediatric palliative care network (AWPPCN). The 2017 conference theme was chosen in recognition of the relatively high number of deaths in this age group and the diversity of need and care which spans multiple specialities, teams and care settings. Professionals often join families in the uncertainty of knowing whether children will survive past infancy and engage in parallel planning – ‘Hoping for the best whilst planning for the worst’.

The event which took place in the Park inn, by Radisson, conveniently located in Cardiff city centre aimed to share knowledge and provide a forum for discussion and debate. Facilitated by the education and training subgroup of the AWPPCN, the team which consists of representatives from both the NHS and Ty Hafan Childrens hospice were able to provide sessions on a range of topics, planned to be of interest to a broad spectrum of professionals working with our youngest families.

The day was oversubscribed with more than 100 delegates from across Wales attending. In order to facilitate ongoing learning for those who missed out on a coveted place, key sessions were filmed and will be available to view in the near future. Delegates rated the conference highly, valuing the interactive nature, range of topics and choice of speakers, with over 98% of delegates rating the conference as excellent or good.

Sessions were delivered by professionals working across the UK and from palliative care, neonates and childrens centres. They focused on topics relevant to those working with babies, infants and pre-school aged children and touched on the needs of families whose babies are diagnosed in-utero with a life threatening condition. The value of advanced care planning and multi-disciplinary working, was discussed throughout the conference. Topics included “Palliative care – the last big taboo: how to hope for the best and plan for the worst”, a discussion panel on collaborative working in the neonatal unit and more practical breakout sessons on memory making and PAC-Plan use.

The morning session was chaired by Mr Rob Jones, the CEO of ty Hafan . As father to Poppy , a ty Hafan service user, he was also able to bring the family perspective to discussions . The family voice, which should remain at the centre of our learning, was also shared through a video in which the value of advanced care planning was bravely discussed by a bereaved mum with one of Wales’ specialist palliative care nurses. Following this, Dr Lizzie Bendle ( Consultant in paediatric palliative care, Evelina Childrens hospital, London) gave us an informative overview of palliative care and comprehensively covered the tricky issues of parallel planning at end of life. A panel of professionals closed the first session using case histories to explore how neonatal, palliative care, hospice and organ donation teams can work together – sharing experiences and learning from Singleton hospital. The area of neonatal palliative care is particularly topical and an area that the neonatal and palliative care networks are hoping to collaborate on more closely in the future. In 2017, high profile cases of disagreement around care at end of life were often in the media. Dr Richard Hain ( All wales palliative care consultant) discussed how professionals and families can work together and reminded us of the value of ongoing discussions and second opinions

In the afternoon delegates were able to choose between sessions on PAC-planning, memory making, multidisciplinary team working and an introduction to the childrens hospice. Delegates valued the opportunity to discuss problems and solutions, share good practice and network in these sessions which were delivered by teams from across Wales. Towards the end of the day we were fortunate to hear Mrs Alex Mancini talk on End of life care for neonates. As Pan London lead nurse for neonatal palliative care and author of many well respected guidelines and policy documents in the field, she is uniquely placed to share up to date information and experiences from other parts of the UK. Delegates heard about up to date guidelines and plans to develop neonatal palliative care services further in London and were able to reflect on how our work in Wales can follow such standards.

In summary, the conference brought together neonatologists, organ transplant teams, palliative care, child development and hospice teams. Together we considered published guidance, practical tools, multidisciplinary working and shared ethical dilemmas and uncertainties. We hope that professionals in Wales used the conference to consider new ways of networking, share both knowledge and uncertainties, look at different ways of working including new tools such as the All wales PAC-Plan, and that they have come away with ideas for their own work place. Feedback received from the day was almost entirely positive, but of course the real learning happens in our own place of work, be it the ward, neonatal unit, clinic or family home. We hope that attendees are continuing to share new knowledge and explore new ways of supporting families.

Planning is now underway for the next conference which will take place in October 2018. We anticipate this to be equally popular, so make sure to mark the date and book on early!

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