• ​Welcome to the Wessex Children's and Young Adults' Palliative Care Network

    We are a group of professionals spanning health, education and social care who care for children and young adults with palliative care needs.  In 2020 we started as a small steering group across hospital, hospice, schools, commissioning and community services to consider how we might meet the significant gaps in provision of palliative and end of life care across Wessex.  We have now expanded to form a community of professionals from statutory, independent and voluntary sectors with the aim of ensuring every CYA with a life limiting condition is cared for by a competent, confident and compassionate team.  Launching as a Wessex wide network in Summer 2023 we plan to deliver a rolling program of education and training, provide forums for discussion and support as well as establish an annual conference.  We want to encourage collaboration across the primary-secondary-tertiary healthcare footprint in Wessex to improve patient pathways, produce guidance, and breakdown barriers between organisations.  We provide an opportunity for professionals in Wessex to support the work towards achieving holistic 24/7 care for our population who deserve the very best but are often forgotten by ‘the system’.  Let me explain with Jayden’s story….

    Patient Stories

  • Videos

    The following films have been produced by Wessex Children’s and Young Adults’ Palliative Care Network based on children and young adults/parents or staff experiences, aligning where possible with the network or steering groups workstreams, and can be utilised to support a variety of teaching and education sessions.

    These digital stories are the individual’s reflections of what occurred and are being shared with the intent to improve the lives of children and young adults, their loved ones, families, carers, and support those working in Palliative and End of Life Care, as to what was and continues to be important to those who have been brave enough to share.

    We appreciate this subject is not the lightest, if you have been affected by what you have seen and heard and would like to speak to someone – please reach out to someone. Whether that is someone you know, or someone call the Samaritans, who offer 24-hour confidential emotional support, just call free: 116 123.
    Videos Titles
    1. Is a career in Children's Palliative Care for you? 
    2. Palliative care services for young people transitioning to adulthood with a life limiting condition
    3. Working across boundaries in Paediatric Palliative Care
    4. Empowering families to provide holistic care for their dying child - lessons for professionals
    5. Communication and involving Palliative Care Teams in the child's journey
    6. Advanced Care Plans

    Is a career in Children's Palliative Care for you?

    In this film each professional explains what they love about their role, describes the key challenges, and outlines the support they receive. Finally, they share a piece of advice for anyone considering joining a team that provides palliative care. To find out more about career opportunities in children's palliative care nursing, visit: www.healthcareers.nhs.uk/nursing-careers You can also review the opportunities on your local children's and young person's hospice website. ​
    This film 'Careers in Children's and Young People's Palliative and End of Life Care' features interviews with:
    • Beth Squirrell, Children's Palliative Care Community Nurse
    • Josie Roberts, CCN Matron and Children's Palliative Care Lead
    • Jo Frost, Specialist Doctor, Children's Palliative Care and Community Paediatrics
    • Fiona Gunner, Chidren's Community Nurse ​

    Palliative Care services for young people transitioning to adult services

    Beth and Josie describe the transition process and what it can be like for their patients and Jo discusses how to provide support to the young person. Children can approach transitioning into adult palliative care services from as young as 14, depending on the needs of the child. This should always be done in a planned, informed, inclusive and seamless way to ensure that the child, their family and the staff caring for them are confident and competent in the delivery of Palliative and End of Life Care being provided.
    This film ‘Palliative care services for young people transitioning to adulthood with a life limiting condition’ features:
    • Beth Squirrell, Children's Palliative Care Community Nurse
    • Jo Frost, Specialist Doctor, Children's Palliative Care and Community Paediatrics
    • Josie Roberts, CCN Matron and Children's Palliative Care Lead ​

    Working across boundaries in Paediatric Palliative Care

    Fiona Gunner discusses the case of Baby Sam, a baby with a life limiting condition diagnosed in the perinatal period.  Fiona discusses the parent’s wishes, and how her role worked when Baby Sam was moved between hospital, hospice and community settings. Fiona also talks about virtual wards and the extra support provided by this new way of working. 
    ​​Our film 'Working across boundaries in Paediatric Palliative Care' features Fiona Gunner, Children's Community Nurse. ​

    Empowering families to provide holistic care for their dying child - for professionals

    This film explores the importance of engaging with a patient and their family as they approach transition and for those with a learning disability. Esther shares the story of her son Josef and her experience of transition and how she was empowered by healthcare professionals to provide holistic care at home.
    This story is the individual’s reflections of what occurred and are being shared with the intent to improve the lives of children and young adults, their loved ones, families, carers, and support those working in Palliative and End of Life Care, as to what was and continues to be important to those who have been brave enough to share.​

    Communication and involving Palliative Care Teams in the child's journey

    In this film 'Communication and involving Palliative Care Teams in the child's journey', Suzie describes the case of Baby Romeo and discusses the key learnings that she'd like to share with professionals. When Romeo was at home, Suzie explains what worked well and what worked not so well, and reflects on the key things that she'd like to celebrate.
    ​
    This story is the individual’s reflections of what occurred and are being shared with the intent to improve the lives of children and young adults, their loved ones, families, carers, and support those working in Palliative and End of Life Care, as to what was and continues to be important to those who have been brave enough to share.

    Advance Care Plans

    Jo Frost, Specialist Doctor in Children’s Palliative Care discusses Advance Care Plans from a clinician's perspective. Jo discusses how to handle questions about end of life, and how to hear the voice of the parents. Suzie, proud mother of Romeo who sadly died aged 2yrs from heart disease, shares her experience of advance care planning and communication with professionals throughout Romeo’s journey. These digital stories are the individual’s reflections of what occurred and are being shared with the intent to improve the lives of children and young adults, their loved ones, families, carers, and support those working in Palliative and End of Life Care, as to what was and continues to be important to those who have been brave enough to share.
    These films have been produced by Wessex Children's and Young Adult's Palliative Care Network and can be utilised to support a variety of teaching and education sessions.
The Network Hosted by Naomi House and Jacksplace Hospices, University Hospitals Southampton and Hampshire Isle of Wight Integrated Care Board (links to the three organisation home pages (NH, Southampton Children’s Hospital, HIOW ICB)