Welcome to the North West Perinatal/Neonatal Palliative Care page
Over 8000 babies are cared for at across the NWNODN every year. Sadly some of these babies will die either in hospital or be discharged with a life-limiting illness to community settings where they can best be supported with palliative and end of life care. It is crucial that these babies receive holistic end of life and palliative care whilst their families and carers are supported through a very difficult and challenging time.
The following documents provide a framework and set of tools to assist health care professionals with their care provision, trying to ensure the right conversations take place at the right time, in the right place and with the right people. This then should hopefully result in the very best care possible being provided.
Guide to using the resources:
There is an overarching North West Perinatal/Neonatal Palliative Care Guideline and two care plans for care within the hospital setting and care provided in a hospice or home. Additional supporting documents have been placed into subgroups to help guide the user quickly to the information they require.
The resources found within this page have been produced as a result of a wide, multi-disciplinary and cross-organisational collaboration. We hope these documents and the information they contain will be welcomed as helpful tools for anybody providing palliative and end of life care in a multitude of settings and places, but always with the baby and their family at the centre. Please send us your comments and feedback after using this page and resources to
NWNODN Perinatal/Neonatal Palliative Care Guideline and Care Plans:
Antenatal Assessment
NWNODN and NW Fetal Medicine Network antenatal assessment form
Maternity Care
Lactation after loss care for the bereaved mother
Nonviable or Pre Viable Births Including Live Birth Following Termination of Pregnancy
Certificates to order from the Sands website
Certificate for fathers less than 24 weeks
Certificate for mothers less than 24 weeks
Non-viable or Pre Viable Births Including Live Birth Following Termination of Pregnancy
Antenatal Congenital Anomaly
Parent Information Leaflet: When your baby has been diagnosed with an anomaly
Parents
SANDS Bereavement Support Book
SANDS Website (includes versions of booklet in other languages)
SANDS: When a baby dies before labour begins
Sexual relationships after the death of a baby
SANDS: When a baby dies before labour begins
Sexual relationships after the death of a baby
Fathers
Financial Advice
Friends and Family
Siblings
Children’s Understanding of Death at Different Ages
When a Newborn Dies: Explaining to young children
Grandparents
Making memories
Psychological Support
Neonatal leaflet (Rainbow Trust)
Organisations offering support
SANDS – Contact for information on local support
Spititual Care
Arranging the funeral
SANDS Booklet: Deciding about a funeral
Coroner
Coroner Investigations: a short guide
Health Fact-sheets:Attending An Inquest
TfSL: A Family Companion Fact-sheet 16 – The Child Death Review Process England
Death Certification
Death Certification & Resources
Guidance on Completion of a Death Certificate
Diagnosing Brain Stem Death
Diagnosis Of Death By Neurological Criteria (RCPCH)
Organ Donation
Organ Donation & Babies with Congenital & Life Limiting Conditions
NWNODN Perinatal/Neonatal Palliative and End of Life Care: Organ Donation
Post Mortem
BAPM Sudden Unexpected Post Natal Collapse
Deciding About A Post Mortem: A Guide for Parents
What Happens At A Post Mortem – Procedures & Timings
Taking baby home
Additional Resources for Health Professionals
National Bereavement Care Pathway
Additional Resources for Families
Support & Resources for Families
Hospices within the North West
Referral Information for Claire House
Zoe’s Place Baby Hospice, Liverpool
Derian House Children’s Hospice, Chorley, Lancashire
Francis House Children’s Hospice, Manchester
Brian House Children’s Hospice, Blackpool
Hope House Children’s Hospice, Oswestry, Shropshire
Ty Gobaith Children’s Hospice, Conwy, Denbighshire
Donna Louise Children’s Hospice, Stoke on Trent