CHILDREN'S HOSPICES need to work closer with adult ones to stop children with life-limiting illnesses “falling through the gaps” at 19, experts warn.

According to charity Together for Short Lives there are currently 49,000 children and young people living with a life-threatening condition in the UK.

But despite the good news they are now living much longer, staff and patrons at Haven House Children’s Hospice in Woodford Green are worried about what will happen when they cannot care for them anymore.

Sarah Craigie uses the hospice in High Road for her daughter Georgia whose undiagnosed condition confines her to a wheelchair.

The 18-year-old also has severe epilepsy, scoliosis, and progressive cerebellar hypoplasia, which means her brain is deteriorating.

Her mum said: “There have been many times when we were told Georgia would be unlikely to survive, but she is a fighter and still here smiling.

“Haven House has been a lifeline for our whole family for many years.

“Georgia loves the time she spends there and the nurses know her so well it also gives me that break to allow me to carry on giving her the best life possible.

“But in an adult hospice everything is so different that I worry what it would be like when Georgia turns 19 next year.”

East London and West Essex Guardian Series:

Haven House patron of 22 years and Chingford and Woodford Green MP of 25 Iain Duncan Smith shares Sarah’s concerns.

Speaking during Children’s Hospice week (May 22-28), he said: “We must ensure young people who reach adulthood continue to receive the best care appropriate for their age and needs.

“I know from families supported by wonderful hospices like Haven House this is a real worry and something we need to address.”

Haven House have a dedicated transition team to help families whose children live beyond their 19th birthday.

Director of care Eileen White added: “The transition from children’s to adult services is often daunting for families.

“They can experience worry, stress, anxiety, and loss. But we aim to support families to ensure a reliable, positive transition.”

To find out more, see the website.