Together for Short Lives
Call the Helpline 0808 8088 100

Transition to adult care

As a child with a life-limiting or life-threatening condition enters their teens and early adulthood, they will move from children’s services to adult services. This process is called transition. It can be a very worrying time for both parents and carers and young people going through transition.

It is important to begin planning for your child’s transition to adult services at an early age – ideally at 14. It is common for parents to feel reluctant to face the prospect of moving on to adult services, where it may seem that there is little expertise in particular childhood conditions, but it can help to make the transition easier if you meet with the new professionals and services in the adult sector and begin to make the emotional adjustment to a different, more adult-centred system of care.

Try not to worry about this stage of your child’s life and the care they will receive. It is only natural to feel anxious about the future, and any change brings about uncertainty.

How are adult services different from children’s services?

Adult services are very different from children’s services in the way they are organised, and the names used for certain services may differ from the children’s sector. Despite these differences, you should feel confident that the level of care will remain the same, and that as long as your family’s needs are met, it will be ok. By planning ahead you will have the chance to familiarise yourself ahead of time with the different services and terms used, and have the chance to ask your care team any questions you might have, so that you feel comfortable with everything before your child makes the move into adult care.

What support is there for my child during transition?

We believe that for transition to be as smooth as possible and for young people with life-threatening conditions to settle into life well as an adult, they should know what to expect and what they can talk to their team of professionals about if things aren’t going quite right. It is important to remember that the young person is always at the centre of the process.

We have developed a guide to help young people with life-threatening conditions to know more about what to expect when they move to adult services. This guide has been divided into two sections. The first section talks about what you can expect at different stages of the transition process to adult services. The second section focuses on different aspects of your life that you may want to plan for as an adult. Read our guide young person’s guide to transition here.

We have also developed a free transition checklist, designed for young people to assess how well agencies involved in their education and care are working together to enable a smooth transition. The checklist focuses on enabling young people to play an active role in planning and decision-making, whilst acknowledging the ongoing role parents and carers will likely play in their care. You can download the checklist as a pdf to complete online or in print.

The Mental Capacity Act and Liberty Protection Safeguards

As a parent or carer of a child approaching adulthood, you will need to think about the shift towards their legal status as decision-makers, and your role in supporting them to make decisions. You can find out more about this using our guide to the mental capacity act which guides you through important legal information you should be aware of.