More children are now living longer with life limiting conditions – however there’s no doubting that the death of a child and loss of a young, short-lived life a particular flavour, pain and poignancy.
It may be even harder for parents and carers to face than a child.
See more on the death of a baby.
See more on loss and grief.
Read a dad’s story of loss.
In our film, we talk to Gemma, a mum whose daughter has a life limiting condition and Jen, a social worker who works in a children’s hospice, to understand more about the challenges of facing a child’s death, when the ‘natural order’ is no more.
The hospice movement has a critical role to play in supporting children, young people and their families. Hospices often offer short planned breaks for a child and some can cater for the wider family. A real home-from-home, bedrooms may be decorated with personal belongings, there’s one-to-one care for children, a range of medical experts on hand 24/7, play and exercise – from hydrotherapy pool to stimulating and relaxing spaces, computer room, spiritual and emotional support and socialising opportunities for children and families. Some offer a private space for a family to be together right till the end. They have excellent publications to help children manage death and dying.
Support for parents
The Compassionate Friends – peer support from other parents is possibly the most powerful support
Finley’s Footprints – Mel Scott, mum of Finley who also experienced loss through miscarriage, shares experience and offers bereavement support.
Together for Short Lives is the UK wide charity working to achieve the best possible quality of life and care for every child and young person who is not expected to reach adulthood. (A merger of ACT with Children’s Hospices UK). Their website provides a useful guide to support available by area across the UK. (They also provide professionals with guidance on standards of care for young people at the end of life.)
Help for young carers (under 18)
Contact the Children & Families section of your local Council – ask for the Duty Worker to find out what help is available.
For bereaved children and young people
If you want to see more info from a young person’s point of view or contact someone who’s been through a loss at a young age see Ask Amber: our ambassador for young people.
See suggested reading in Bereavement for good books for young people.
Action for Sick Children
Organising special days for ill 16-40 year olds:
Information and research
This information is aimed at professionals, but may be of interest: Practice Guide for end of life care and planning for children and young people with life-limiting conditions.
Research shows that the number of children and young adults in England with conditions such as muscular dystrophy, neurodegenerative disorders or severe cerebral palsy is far higher than was previously thought, and is increasing year on year.