We are delighted to announce that we’ve been awarded funding by Her Majesty’s Government and the Big Lottery Fund to tackle loneliness in families looking after a seriously ill child.
The grant from the Building Connections Fund will be used to grow our support with families, including our free helpline and online family support group that helps connect families caring for seriously ill children. The funding will help Together for Short Lives reach out and support the growing number of families in need of vital care and support.
How does loneliness affect families looking after a seriously ill child?
In 2018 our survey, Hidden Lives, revealed that 84% of families caring for a seriously ill child have felt isolated since their child’s diagnosis. And this can be compounded by the public’s unease in talking about serious illness in children and childhood death. A survey we carried out found that one in three people (38%) would not feel comfortable talking to a friend whose child had been diagnosed with a life-limiting condition.
This has a significant effect on the overall mental health and wellbeing of parent carers, with nearly three quarters of all families looking after disabled children experiencing anxiety, depression or breakdown due to isolation.
That sense of isolation was really brought home when the only guests at my child’s first birthday were two community nurses
Parent surveyed in the Hidden Lives survey
Why are families caring for a seriously ill child more at risk of loneliness?
Many families struggle to access the right care and support they need and can face lots of barriers to social inclusion and community engagement, including:
- physical accessibility to social spaces
- dealing with the unpredictable nature of their child’s condition
- physical and emotional exhaustion
Growing our national helpline
Our helpline provides a listening ear for families and connects them with local services, so they get the support they need.
We know that demand for the service is growing and that there’s an urgent need to extend the 1-1 support we can offer. This year alone Together for Short Lives has seen a 30% rise in helpline calls.
Analysis of our helpline has revealed a surge in calls relating to bereavement, emotional support and counselling: a clear sign that families are experiencing feelings of loneliness and distress.
Using this funding, we’ll extend the reach of our helpline by recruiting an additional Family Support Officer to aid the helpline’s growth and work in the community to ensure families know about the service.
Growing our online family support services
Face-to-face meetings can be particularly difficult for families who are caring for a child with complex needs – just getting out the door with bulky medical equipment or finding someone they trust to deal with the complexities of their child’s condition can be impossible.
We will use digital platforms to provide a more accessible and inclusive space for families to share and connect. This includes the growth of our Family Facebook Group and introducing facilitated web-chats, to enable small groups of families to come together digitally to discuss particular areas of interest.
Reaching out to families: face to face
There are at least 49,000 children with life-limiting and life-threatening conditions and the number is rising. We want to ensure that every family knows about the help available to them and is supported to access it. Our newly funded Family Support Officer will be able to dedicate more time to reaching out to families in need of support, signposting them to local support and helping them to get the care that’s right for them.
We would like to say a huge thank you to Her Majesty’s Government, the Department for Digital, Culture Media and Sport, and everyone who plays the National Lottery. Without your support we wouldn’t be able to grow this important area of our work.
You can read the news story issued by the Department for Digital, Culture Media and Sport here.
If you are involved in caring for a seriously ill child and you’re experiencing loneliness, you can access support over the phone by calling 0808 8088 100 (10am-4pm Mon-Fri) or by contacting info@togetherforshortlives.org.uk. You can also apply to join our Facebook support group here.