Children and adult hospices need to work closer together to avoid young people "falling through the gaps" transitioning to adult services, the Rt Hon Iain Duncan Smith has warned.

The former Secretary of State for Work and Pensions made the remarks as part of Children’s Hospice Week which takes place from 22-28 May.

Mr Duncan Smith said: "In the 22 years that I have been a Patron of Haven House Children’s Hospice, incredible progress has been made improving the life expectancy and quality of life for children with life-limiting conditions.

"This is a fantastic achievement to celebrate in Children’s Hospice Week, but we must ensure that young people who reach the milestone of adulthood continue to receive the very best care which is appropriate to their age and needs.

"Too many young people and their families find the transition from children to adult services difficult and fear they will fall through the gaps and be left without support.

"I know from families supported by wonderful hospices such as Haven House that this is a real worry and something which we must address."

Figures from Together for Short Lives show there are 49,000 children and young people living with a life-limiting or life-threatening condition in the UK.

The charity has stated that a lack of joined up care between children’s and adult health services means that all too often, young people with a life-limiting condition find themselves falling through the gaps, caught between children’s and adult services.

Sarah Craigie, from Dagenham, uses Haven House for her daughter, Georgia, who turned 18 in February. Georgia has an undiagnosed condition which confines her to a wheelchair. She has severe epilepsy, curvature of the spine (scoliosis) and progressive cerebellar hypoplasia, meaning her brain is deteriorating.

Georgia is often seriously ill and unlikely to live into adulthood, but Sarah is optimistic and hopes she can reach her 19th birthday and beyond. Haven House has been a "lifeline" to her family, but she knows that Georgia is likely to need adult services once she reaches 19.

Sarah said: "There have been many times when we were told that Georgia would be unlikely to survive, but she is a fighter and still here smiling 18 years later. Haven House has been a lifeline to Georgia and my family for many years.

"I know Georgia loves the time she spends there and is benefitting from music therapy and physiotherapy. The nurses know her so well and it also gives me that break to enable me to carry on giving Georgia the best life possible.

"The support is vital to us and there is no way we would be able to function without it. Haven House caters for her complex needs. In an adult hospice the environment is so different that I worry about what it would be like when Georgia turns 19 next year and we have to find a suitable adult hospice that provides respite like Have House does."

Eileen White, Director of Care at Haven House, said: "Increasing numbers of young people with life-limiting conditions are living longer, and this means the transition from children’s services into adult services is often daunting for families and young people.

"They can experience feelings such as worry, stress, anxiety and loss. However, we aim to support families to ensure a transparent, reliable and positive transition to adult support services.

"At Haven House we have a dedicated transition team who work closely with families and healthcare professionals to ensure all care is coordinated to enable a smooth transition once a child reaches their 19th birthday."

Find out more about our transition services.

Read Georgia's story.