Giving families a break

Where families are caring for a child with a life-limiting condition and providing around the clock care, relationships often suffer. 36% of families break down. Families need help now, so they can make the most of their time together.

Hearing the news that your child has a life-limiting heath condition is heart-breaking. Many children have complex conditions and need care 24 hours a day, seven days a week. Families provide most of their child’s care at home themselves, which can be exhausting. One parent may have to give up work to care for their child at home, and may face financial hardship on top of the emotional impact of knowing their child will die young. It can be an isolating and lonely time for families. They need all the care, support and financial help to help them make the most of every precious moment together.

Short breaks are essential to relieve some of the pressures on families. Free from being responsible for providing care around the clock for a few hours or days, short breaks give parents a chance to recharge their batteries, make memories with their seriously ill child or spend more time with their other children. For children and young people with life-limiting conditions, short breaks give them an important opportunity to be with their peers and be more independent.

Yet, local authority short break funding is not keeping pace with need. In England, despite the government’s commitment to short breaks, local authorities are failing to support them. A recent set of freedom of information (FOI) requests revealed that even though local authorities have a legal duty to provide short breaks for disabled children around 1 in 7 (14%) are failing to commission these services. And a staggering 4 in 5 (81%) councils are failing to plan and fund palliative care for children and young people. And worryingly 70% of children’s hospices say they will have to cut short breaks if the state Children’s Hospice Grant is withdrawn.

We want the UK’s governments to hold local authorities to account to increase funding for short breaks for disabled children, provided at home, in the community and in children’s hospices - this would allow families a rest and save the state money by reducing the number of hospital visits as well the incidence of family breakdown.