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A Neonatal Pathway or
Babies with PalliativeCare Needs
ACT’s care pathway approachACT is the UK charity working to achieve the best possible quality o lie and care or everychild who has a lie-limiting or lie-threatening condition and their amily. ACT advocates a carepathway approach to delivering care and support to children and amilies throughout theirjourney; rom diagnosis to end o lie and into bereavement. Pathways can help proessionalsto engage with the child’s and amily’s needs and make sure everything is in place or amiliesto access the support that is right or them. ACT has developed a range o care pathways orbabies, children and young people that provide a generic ramework which service providersor commissioners can adapt locally.
ACT has also developed a dedicated amily companion to its care pathway, as well as a serieso assessment tools to measure the success o your pathway approach.
This document has been designed to introduce you to A Neonatal Pathway for Babies with Palliative Care Needs , to share how it is structured and to give you overview
diagrams o the three stages o the pathway.
Valuing short lives
ACT or children ACT or amilies ACT together ACT now! www.act.org.uk
Introducing the ACT Care Pathway Series
8/6/2019 A Neonatal Pathway for Babies With Palliative Care Needs Introduction Diagrams
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Stage One:Entry to the pathwayFirst standard: Breaking news
Second standard: Planning or going home
Stage Two:Living with a lie-threateningor lie-limiting condition Third standard: A multi-agency assessment
o the amily’s needs
Fourth standard: A multi-agency care plan
Stage Three:End o lie and bereavement Fith standard: An end o lie plan
Sixth standard: Continuing bereavement support
A neonatal pathway or babieswith palliative care needs
Help in developing a localor regional care pathway
approachACT is committed to supporting individuals and
organisations to develop care pathways or babies,
children and young people with palliative care needs.
I you would like to discuss ACT’s care pathway
approach or would like any support or guidance
in developing a pathway or your service, please
contact ACT. ACT can also provide you with sel-
assessment tools so you can measure the success
o your pathway.
You can read more about ACT’s care pathways
or babies, children and young people at:www.act.org.uk/carepathways
A Neonatal Pathway for Babies with Palliative Care
Needs has been developed primarily to help support
those proessionals working in maternity, obstetric
and neonatal units who care or babies in the frst
28 days o lie who have a lie-threatening or lie-
limiting condition. It aims to encourage practitionersto ensure that the appropriate care is available in the
right place, at the right time or each o these babies.
It draws together the proessionals and resources
needed to accompany the baby and amily along
their unique care journey.
The pathway is designed to be started either
antenatally or prior to discharge rom hospital and
ollow the baby through to the community as soon as
the baby’s condition is recognised as lie-limiting or
lie-threatening.
This pathway has three key stages, is guided by six
sentinel standards and provides a template to ensure
that the baby and amily are always at the centre o
the care planning process:
Ninety eight per cent o neonatal deaths occur in the clinical environment o a
hospital setting. Some o these babies, especially those or whom there is no
hope o cure, could be transerred to their amily’s home or a local children’s
hospice, with appropriate support.
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Diagram 1: Stage One: Entry to the pathway
Identifcationo concern
Breaking news
Planning or going home
Clinical assessment o the baby
Diagnosis or recognitiono lie-threatening/lie-limiting condition/prognosis
Baby
Baby
Environment
Environment
Family
Family
Critical event Antenatal screening
Newborn examination
The First Standard
The Second Standard
Parental/proessionalconcern
Antenatal scan/tests
Advocacy
Discharge/transer to amily home/less technological care
Stage Two: A multi-agency assessment o the amily’s needs
Inormation – choices
Training in care o baby
Transport
Siblings
Contact details or proessionals
Post-natal care o mother
Bereavement support
Interpreters
Emotional support
Religious and spiritual support
Inormation – choices
Training in care o babyTransport
Siblings
Contact details or proessionals
Post-natal care o mother
Bereavement support
Interpreters
Symptom control
Emergency care plan
Baby care needs
Religious and spiritual care
Symptom control
EquipmentFollow-up (routine/emergency)
Religious and spiritual care
Baby care needs
Place o care
People involved in uture care
GP and primary health team
Midwiery team
Hospital team: neonatal and
paediatric services
Social services
Registration o birth
Place o care
GP and primary health teamMidwiery team
Hospital team: neonatal and
paediatric services
Social services
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A multi-agency assessment o the amily’s needs
A multi-agency care plan
Baby
Baby
Environment
Environment
Family
Family
The Third Standard
The Fourth Standard
Recognition o end o lie
Stage Three: End o lie and bereavement
Inormation – care choices
Support in care o baby
Sibling well-being
Contact details or
proessionals
Post-natal care o mother
Financial/benefts advice
Emotional needs
Family unctioning
Respite/short breaksInterpreter
Genetic counselling
Psychological support
TrainingAccess to benefts
Parent support group
Sibling support
Respite/short breaks
Pharmacy/equipment supplies
Symptom control
Equipment
Follow-up (routine/emergency)
Baby care needs
Therapies
Symptom management
Baby care needsNursing support
Therapies
Potential home adaptations
Aids/equipmentMotability/Blue Badge Scheme
Family
GP and primary health team
Midwiery team
Hospital team: neonatal and
paediatric services
Social services
Diagram 2: Stage Two: Living with a lie-threatening or lie-limiting condition
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An end o lie plan
Continuing bereavement support
Baby
Baby
Environment
Environment
Family
Family
The Fith Standard
The Sixth Standard
Inormation – choices
Transport
Sibling involvement
Contact details or
proessionals
Emotional support
Spiritual issues
Cultural/religious issues
Funeral planning
Heart valve donationGrandparents
Post-natal care o mother
Memory box
Inormation – choices
Transport
Sibling involvement
Contact details or
proessionals
Emotional support
Spiritual issues
Cultural/religious issues
Funeral planning
Grandparents
Post-natal care o mother
Symptom control
Equipment
Follow-up (routine/emergency)
Spiritual issues
Cultural/religious issues
Allowing a natural
death care plan
Funeral
Burial/cremation
Place o care
Ceremony/ies ollowing
the death o baby
Registration o death
Ambience
Place o death
Place ater death
Ambience
Diagram 3: Stage Three: End o lie and bereavement
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How to order your ACT care pathway
You can buy a copy o A Neonatal Pathway for Babies with Palliative Care Needs at ACT’s online shop
or call ACT on 0117 916 6422 or email [email protected]
Online Shop: www.act.org.uk/shop
A Neonatal Pathway for Babies with Palliative Care Needs
Published November 2009
ISBN No: 1 898447 13 6
ACT’s care pathway series also includes:
Integrated Multi-agency Care Pathways for Children with Life-threatening or Life-limiting Conditions
The Transition Care Pathway
A Family Companion to the ACT Care Pathway
You can see ACT’s ull range o publications and resources at our online shop: www.act.org.uk/shop
ACT members are entitled to 25% discount on all ACT publications. To fnd out how you can become a member visit:
www.act.org.uk/join or call ACT on 0117 916 6422
I you need any help developing a care pathway please contact ACT at [email protected] or visit:
www.act.org.uk/carepathways
Valuing short lives
ACT Brunswick Court, Brunswick Square, Bristol, BS2 8PE
T: 0117 916 6422
F: 0117 916 6430
www.act.org.uk
Helpline: 0845 108 2201
ACT is the only organisation working across the UK to achieve the best possible quality o lie and care or
every child and young person who has a lie-limiting or lie-threatening condition and their amily.
ACT is a registered charity and a company limited by guarantee. Registered Charity No. 1075541 Company Registration No. 3734710 England
