If you live in England, please write to your MP to ask them to contact Chancellor Rishi Sunak about funding short breaks for terminally ill children at the next Comprehensive Spending Review. Time is running out for these families, so please act now to help give children and families a break.
Regular short breaks for respite that meet their complex physical, emotional and spiritual needs are a lifeline for seriously ill children and their families. The pressure on families caring for a seriously ill child with complex needs is immense. The burden of caring for a child 24/7 and the knowledge that your child will die young can be too much to bear, so having access to regular short breaks is vital to relieve this stress, spend time as a family and do the things that other families do. For Noah’s family, the care and support provided by their local children’s hospice makes a world of difference.
‘Give Me a Break’, a report by Together for Short Lives and Julia’s House Children’s Hospice, includes new research by Pro Bono Economics, in association with volunteers from Compass Lexecon which sets out the positive impact that short breaks have.
The team has estimated that 11 per cent of parents of children who need respite delivered by children’s palliative care providers would experience significantly less stress as a result of receiving breaks – moving them out of the ‘most stressed’ category of society. As a result, they improve parents’ physical and mental health and reduce their demand for NHS care. They reduce the number of sick days parents need to take off work, leading to improved productivity and additional tax revenue. They are likely to have a positive impact on siblings and reduce the risk of parental relationships breaking up.
Existing legislation and government policy is clear that local councils in England should make sure families can access short breaks. However, too many cannot, which is a serious health inequality. The way in which short breaks are planned, funded and provided is patchy and unsustainable. Local authority funding for children’s hospices was cut by 12% in 2019/20.
Isolated during the pandemic without access to many of the services they previously relied on, many families desperately need a break. Making sure that vulnerable families facing their worst nightmare can access the breaks they need is the very least we, as a society, can do. Please support our call on the government to deliver on the benefits of short breaks by filling the £434 million gap in funding for social care services for all disabled children in England and their families by creating an annual ring-fenced grant. Local authorities would be able to use this money fund short breaks for seriously ill children equitably and sustainably.
Help us make a lifetime of difference to seriously ill children and families by writing to you MP today. You can also get involved on social media using #GiveMeABreak