“When I was approaching my 18th Birthday we started looking into other options available to me and there just wasn’t anywhere suitable. When I heard the news I’d be able to continue coming to The Donna Louise, I said, ‘I would get out of my wheelchair and jump for joy if I could.” Charlotte, age 20.

Transition into adulthood affects everything that families know – from arranging medical and hospital appointments, to how they receive the equipment they need to care for their child. In 2015, we began a series of family focus groups to gather feedback to help shape our 10 year strategy. The discussions made it very clear that transition is a massive concern for all families, with one parent saying, “I almost hoped my daughter would die before she reached 18 so we didn’t have to go through transition.”

This sort of feedback helped to make up our minds that we needed to do more to help our young people and their families, so at the end of 2015 we began a pilot to offer support and services for young adults over the age of 19.

This was welcomed by all our young adults, with Charlotte, who was 18 at the time, saying: “I’m so pleased that I’ll be able to come to The Donna Louise after my 19th Birthday. There’s nowhere else like the hospice. When I was approaching my 18th Birthday we started looking in to other options available to me and there just wasn’t anywhere suitable.”