The content and key messages on this page have been developed in collaboration with clinicians, campaigners, people accessing palliative care, and their caregivers. You can use this content in your social media and as part of your World Hospice and Palliative Care Day activities. WHPCA would love to hear about any projects that are working to create equity in access to palliative care for children and neonates. Please share them with us by contacting our Communications Manager.
‘Leave No One Behind – equity in access to palliative care’
Thank you to Dr Julia Ambler from Umduduzi Hospice in Durban, South Africa for these key messages below.
Key Message – Children’s Palliative Care
Children are not small adults and need care and communication to be appropriate for their age and developmental stage; they may have their own ideas, concerns and even solutions so involve the child in their health care decision making.
Children facing serious illness are vulnerable and depend on the adults around them to assess and manage their pain and other distressing symptoms to improve quality for the child and family.
Many children requiring palliative care are non-verbal or pre-verbal and extra attention needs to be paid to assessment and listening to the primary caregivers – they know the child best.
Children facing serious illness are still children and should have the right to education, the right to play and the right to be heard. Palliative care for children includes care for their mind, body and spirit and therefore upholds these rights.
Children must be protected from maltreatment and abuse; this includes protection from pain and suffering caused by hospitalisation, illness and procedural pain.
Thank you to Alex Mancini - National Lead Nurse for Neonatal Palliative Care, Chelsea & Westminster NHS Foundation Trust, CW+, The True Colours Trust for these key messages below.
Neonatal Key messages
On World Hospice and Palliative Care Day we must remember the newborns and infants who need palliative care. #leavenoonebeind21 ‘equity in access to palliative care’ means we start at the very beginning of life, including the unborn baby. #FetalMedicine #uncertainfuture
Palliative care for newborns /infants is about enabling families to be together however long that might be. With access to knowledge and training healthcare workers can empower families to make the best decisions for their family #leavenonebehind21
In the world of neonatal palliative care there is so much uncertainty but empowering families to make choices, with guidance and compassion from healthcare workers is a gift we must share more widely. Is it possible for a baby to feel the sun in its face after a life on a neonatal unit? Maybe – let us work with families to make it happen if that is their wish
#Palliative care is there for many at the end of life. The knowledge that it is also there for newborns and infants #neonates at the beginning of life could be seen as the best kept secret! @mancini_smith National Lead Nurse for Neonatal Palliative Care in the UK is working with teams to ensure this is equitable for all families. Find out more
#neonatalpalliativecare – look beyond the diagnosis – listen, what is important to families. Have tender conversations and keep on listening #WHPCD21 World Hospice and Palliative Care Day shines a light on palliative care from the beginning to the end of life – no matter what age.
In a world of #Covid-19 many siblings are not able to meet their brother or sister on a neonatal unit. If that baby, with a life-limiting condition or uncertain future dies, there will be a ripple effect for many years – Leave No One Behind – equity in access to palliative care.