New research reveals a significant rise in the number of children with life-limiting conditions

The Make Every Child Count study, conducted by the University of York, has revealed that the number of children in England with life-limiting or life-threatening conditions increased to 86,625 in 2017/2018 compared to 32,975 in 2001/2002.

The research is published amid the Coronavirus crisis in the UK, which has already had a far reaching and negative impact on families caring for seriously ill children, who are feeling frightened, isolated and alone – with some families struggling to get the right care and support for their child. Responding to predications that that the number of children with life-limiting conditions will rise at least another 11% by 2030, children’s hospices are together calling on the government, NHS and others to make sure seriously ill children and their families can access the lifeline services, such as Forget Me Not Children’s Hospice.

The new research also reveals that prevalence of life-limiting conditions is by far the greatest in babies under the age of one.

Lis Meates, our Director of Service Delivery and Development, said “The research is particularly concerning for our region, as it shows Yorkshire and The Humber has one of the highest numbers of children living with life limiting conditions. But children’s hospices such as Forget Me Not are reliant on fundraising, so without continued and increased support from both the community and the government, we will only be able to care for a small portion of them”. Lis adds “The Make Every Child Count research also shows the very clear need for services such as Forget Me Not’s pioneering perinatal service, due to the prevalence of deaths in babies under the age of 1. But this service, which support families from as early as the 24-week scan, currently receives no government funding.”

“The Make Every Child Count research is really valuable,” says Luen Thompson CEO of Forget Me Not Children’s Hospice, “as it will help local commissioners of services to fund the provision of the right care and support for children with life-limiting conditions, now and in the future. The specialist services needed to support babies under one year old with life-limiting conditions, where the mortality rate is highest, are different to those needed to support the growing number of young people who are living into early adulthood, but both are equally important to get right. This is why our unique perinatal service was developed and is fundamental to the range of support we provide”

A copy of the full report can be found here.