NHS England — North West » Children and Young People PEoLC: For Family, Friends and Carers

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.

Useful Websites

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

Child Bereavement UK

Child Death Helpline – Home

Home – Child Disability (child-disability.co.uk)

Home | Children of Jannah

Family Fund

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

Living Made Easy – Home

https://www.familyfund.org.uk/mobilitysupport – helps families raising a disabled or seriously ill child under three years old, to meet their mobility needs

Children’s charity, granting wishes to seriously ill children | Make A Wish (make-a-wish.org.uk)

Home – Once Upon a Smile

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

Home Page – Reuben’s Retreat (reubensretreat.org)

Sands | Stillbirth and neonatal death charity – Stillbirth and Neonatal charity

National UK Charity for Seriously Ill Children | WellChild

Children’s Wheelchair Charity | Wheelchair Charity (whizz-kidz.org.uk)

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.