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Making Transition Feel Less Frightening For Families
Making Transition Feel Less Frightening for Families
When a young person with a life-limiting condition moves from children’s to adult services, the transition can be one of the most emotional and uncertain stages of their care.
For families, it is far more than a change of team. It can mean leaving behind the professionals who have supported them for years and beginning to build trust with new people at a time when stability matters most.
For young people, it can raise difficult questions about independence, identity and what the future may look like. For parents, it can feel like stepping away from a system that has helped keep their child safe.
Across the UK, transition between children’s and adult services is often one of the least consistent parts of care. Different services move young people across at different ages which can leave families unsure who is responsible, what support is available and where to turn next.
At ellenor, this is something the Children’s team is working hard to change.
Unlike many hospices, ellenor provides care for both children and adults. That means transition does not have to feel sudden or unsettling. Instead, it can be planned gradually, with support beginning years before a young person moves into adult care.
For Tina Dodd, Children’s Palliative Care Nurse Specialist at ellenor, that early planning makes all the difference.
“Transition can be one of the most stressful and frightening times for families,” she says.
“Getting it right means making it as smooth as possible and giving people the information and support they need to feel prepared and supported throughout the process.”
Families may first access ellenor in different ways. They may be referred by hospitals, consultants, GPs or other healthcare professionals and in some cases may also self-refer. However that relationship begins, it can last for many years.
For children with palliative needs, support may begin early in life and continue throughout childhood. As they grow older, ellenor also begins to look ahead. From around the age of 14, young people who are likely to need ongoing support into adulthood are identified for transition planning.
This does not mean an immediate move into adult services. It means ellenor can begin planning early with the young person and their family, so they feel prepared and are not faced with a sudden change later on.
That preparation becomes more structured from the age of 16. Alongside the Children’s team, ellenor’s Adult services also begin to be involved. Nurses, clinicians and wellbeing teams start getting to know the young person and their family long before any formal move takes place.
Regular multidisciplinary meetings also help shape each young person’s care. These can bring together children’s nurses, adult nurses, consultants, GPs and wider professionals ensuring everyone understands what matters most to that young person and how best to support them.
No two young people experience transition in the same way.
Some want to take control early learning about their medication, asking questions and making decisions about their care. Others feel frightened or overwhelmed and still rely heavily on parents to speak on their behalf. Some live with complex communication needs. Others are fully aware of the changes happening around them and what those changes may mean.
Part of the Children’s team’s role at ellenor is to help young people grow in confidence and have more say in their own care.
“As young people get older, their voice becomes so important,” says Tina. “We want to hear what matters to them, what they want, and how they feel about their future.”
Parents are supported too. Alongside the practical challenges, transition can bring fear of the unknown, anxiety about adult services and the emotional weight of what lies ahead.
That is why emotional support is built into the process. Counselling may be offered at the beginning of transition and again after the move into adult care, recognising that families often need time and space to process change.
Joint visits also play an important role. Rather than one service ending and another beginning overnight, adult services begin to be introduced while the Children’s team is still actively involved. Relationships are built gradually, helping young people feel known and supported throughout.
The move into adult services usually begins from the age of 18. For many young people, this happens gradually and is usually completed by around 19. The aim is not a sudden change, but a steady and supported move into the next stage of care.
What becomes clear is that transition is about far more than referrals, timelines or processes. It is about trust. It is about making sure young people are listened to, supported and never lost in the system. It is about helping families feel informed, included and not alone at what can be a deeply uncertain time.
Most of all, it is about recognising that moving into adult care is not one single moment. It is a gradual process that takes time, care and understanding.
“At ellenor, we know transition can feel like a daunting time for families which is why it is carefully planned and supported at every stage. We begin early and keep each young person and their family at the centre of every decision. Families are never expected to manage this change alone. Our teams are there to support them throughout the transition process.”
If you would like more information, please contact ellenor on 01474 320007.
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