Below are some resources for family, friends and carers that we hope you will find useful.
What is Advance Care Planning?
“Palliative care for children and young people with life-limiting conditions is an active and total approach to care, from the point of diagnosis or recognition, throughout the child’s life, death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on the enhancement of quality of life for the child or young person and support for the family.”(ACT 2009)
Palliative care can support children and families when they have a condition which is not, or may not be, curable and support choices in care including place of care and intensity and extent of treatment or intervention.
The children’s Advance Care Plan (ACP) helps in discussing and communicating information about health needs and wishes for the future. It helps ensure the child receives the most appropriate care, particularly in an emergency and helps to reduce the number of times a family have to tell and retell their story. ACP can help in planning for different situations.
It is optional, offered to all but decided by the families. More information on advance care planning can be found here.
Alder Hey Children’s Hospital | Alder Hey in the Park based in Liverpool
Homepage – Royal Manchester Children’s Hospital (mft.nhs.uk) based in Manchester
Children’s Hospices in the North West
Derian House Childrens Hospice – Providing respite and end-of-life care based in Chorley, Lancs
Home | Claire House Children’s Hospice | Make a Difference Today based in Wirral, Merseyside
Francis House Children’s Hospice based in Manchester
Home – Brian House Children’s Hospice based in Blackpool
Hope House Children’s Hospices based in Shropshire
Charitable Organisations providing support
4Louis – Stillbirth, Childloss – Supporting families through miscarriage, still birth and child loss
For babies born premature or sick | Bliss – BLISS for babies born premature or sick
http://www.bdfa-uk.org.uk/ – Batten Disease Family Association
Home – ICPCN – International Childrens Palliative Care Network
Gaddum – Gaddum – Charity offering advocacy, carer support and therapy services to Manchester
JUMP Children’s Charity – Children’s Charity provide children with life limiting health conditions and their families the opportunity to create everlasting memories together
https://www.familyfund.org.uk/mobilitysupport – helps families raising a disabled or seriously ill child under three years old, to meet their mobility needs
Rays of Sunshine – national charity that brightens the lives of seriously ill young people by granting wishes and providing ongoing support in hospital and within the community
Remember My Baby – UK based registered charity which offers a FREE gift of baby remembrance photography to UK parents, experiencing the loss of their baby before, during or shortly after birth
Sands | Stillbirth and neonatal death charity – Stillbirth and Neonatal charity
https://www.willowfoundation.org.uk/ – Willow Foundation supporting 16 – 40 year olds living with life limiting illness
Winston’s Wish – giving hope to grieving children (winstonswish.org) – support grieving children and young people after the death of someone important.