Roald Dahl's Marvellous Childrens Charity

Transition of care

We are improving the quality of healthcare for young people moving from children's to adult services

Moving from Children's to Adult Healthcare Services

The move from children's to adult healthcare services is a significant change for any young person and can be particularly tough for young people with complex, long-term health conditions. Throughout their childhood, they may have had intensive support from their family and health services to help them manage their conditions. When their healthcare is managed by adult services and in the context of NHS funding challenges, the transition process can be a daunting time for any young person and their family. Having a difficult experience can delay treatment, affect their emotional needs, cause disengagement with care and increase hospital admissions.

Angela Horsley, Head of Children, Young People and Transition NHS England and NHS Improvement highlighted that a lack of focus on transition can lead to unnecessary A&E attendances: “Children and young people account for 25% of emergency department attendances and are the most likely age group to attend A&E unnecessarily”

Our focus

Although we are primarily a children’s charity, we have identified an urgent need in the transition system. We have found that there are gaps across healthcare provision and we are working with the NHS to solve these issues as part of NHS Improvements Transition Collaborative who are working across the NHS on this fundamental problem.

We have made this our focus until 2021 because of these highlighted needs from many of the NHS Trusts we work with. Also, we know that transition is part of every Roald Dahl Specialist Nurses job and we work with them on training and development in this area. 

We need to do more

We need to continue to work in this area, and to do so, we need your support. By giving to us now, you can help addres these serious issues, supporting the way tranisiton is managed for seriously ill children and young people. Donate now, or contact us for more information.

Lost in transition - David's story

David

David is the oldest of three children. Both he and his younger sister Minka were born with the inherited condition Sickle Cell and it’s been a constant worry for their Mum Deborah – a recently widowed nurse, who works nights at the local hospital.‘I may be a qualified nurse but when it’s your children, you’re their Mum and it’s so scary…’Her son David is a charming, thoughtful 18-year old, currently in his first year at university studying computer technology.

Having lived with Sickle Cell since birth, David recently made the transition from child to adult healthcare services. ‘It’s weird. I’d had the same doctors and nurses that I’d known since birth and then suddenly I can’t access them…They helped me understand sickle cell and helped me live with it; but then, because of my age, suddenly they’re not there anymore!’

Sickle Cell is a chronic blood disorder that causes anaemia and episodes of severe pain (called a crisis). For David, it has meant many more emergency trips to hospital than other children as he was growing up and it’s become more of a burden as he’s got older: ‘Medication is part of my day to day routine but I hate having to call in sick unexpectedly and not being able to do normal things - like football, which I love – just to try and minimise the risk of a Sickle Cell crisis.’ 

David has had some terrible experiences of being shuttled between paediatric and adult wards when he is in severe pain and has been brought in to hospital. Sometimes when a young person is around 16 years old, hospital staff do not want to take responsibility for them, and they suffer badly as a consequence. On one occasion, he was in pain and needed to be seen within 30 minutes to stop a full-blown crisis happening. Unfortunately, because of the indecision of staff he was not seen, and the pain became unbearable. Having a transition nurse to contact would have stopped this indecision and would ensure that David would avoid the pain and having to have emergency treatment.