This week is national Children’s Hospice Week, and of course the staff and children at Brian House have been joining in, dressing up in a variety of costumes from superheroes to rock and roll dancers.

The theme of the week is ‘Making Every Moment Count’, and our Chief Executive David Houston joined 27 other heads of children’s hospices from around the country in asking the new government to ensure that there is fair and sustainable funding for respite breaks for families through a new, ring-fenced fund, allocated to local authorities in England. 

In a letter to the Guardian, Barbara Gelb, CEO of the charity Together for Short Lives says: “Short breaks for families caring for a child who may not reach adulthood mean more than just a holiday – they provide vital respite and help families cope with the pressure of providing round the clock care for their children.

“These families rely on frequent short breaks with specialist care and support to enable them to spend time as a family – recharging batteries, making memories with the seriously ill child and spending quality time with brothers and sisters. However, too few local authorities fund these crucial services for children with complex conditions, meaning families struggle and will often need more expensive emergency support from health or social care.”

The hospices have joined together to call for change because they say that without funding, some families with life-limited children – many of whom are already under pressure – risk losing out on the support they need.

Celebrities helping make moments count for Children’s Hospice Week this year include Simon Cowell, Holly Willoughby, Louis Walsh, Ben Haenow, Michael Sheen and Joan Collins.  

Together for Short Lives patron Simon Cowell said: “Some of my most memorable moments have been my visits to children’s hospices. They are such happy, positive places helping families caring for a child that may not reach adulthood make the most of their time together. Please support Children’s Hospice Week this year, because moments count.”