Depending on the severity of the condition, the child may be eligible for respite at a children’s hospice. Quite often, the child does not need to have an official life-limiting condition. Hospices provide children with a limited number of nights a year. They tend to have family accommodation in case the parents want to be close but still have that break and also offer emergency care as well as end of life care.

Councils also offer respite if the child fits certain criteria but sadly many respite centres have been closed down due to funding cuts.

“We were really struggling with lack of sleep and anxiety from constantly being on edge with our daughter’s seizures. Being able to spend a few nights every few months in our local hospice, knowing our daughter was being looked after downstairs during the night whilst we could get much needed rest in the parent accommodation upstairs was amazing.”

A child with MICPCH enjoying the large ball pit at a respite centre