Transition to Adulthood
Moving from children’s to adult services, whether in healthcare, education, or daily life, can feel like a big step. It is easy to get overwhelmed. This page aims to support you as a young person, you prepare for this next stage.
Transition isn’t just about a change in services; it’s about gaining independence, having a say in decisions, and feeling ready for adulthood. You’ll find information and resources to help you understand what to expect, from navigating changes in your NHS care to preparing for college, university, or work.
There are many fabulous organisations out there who will ensure you feel supported and informed every step of the way.
Below you’ll find advice, practical resources, and personal insights to help you feel more confident about what comes next. You’ve got this!
The Paediatric FOP Team at RNOH are there to help!
The Clinical Nurse Specialist team for patients with FOP offer support and guidance to young people and their families. CNS Kayleigh takes the lead on this. They use the Ready, Steady, Go! programme which you can see below.
Patients who are registered with the RNOH will already be part of this transition programme, as and when the time is right. If you are not a patient at RNOH but would like to know more, please contact us.
Get in touch: Contact Us
The Ready Steady Go programme is here to help you take more control of your health as you get older.
The programme designed to support you as you move from children’s to adult healthcare services. Using easy-to-follow steps, it helps you learn more about your condition, build confidence, and get ready to make decisions about your own care. It’s not something you have to do all at once… just small steps at the right time, with support from your family and healthcare team along the way.
Find out more about the programme here: Ready, Steady, Go!
The Great Ormond Street Hospital (GOSH) Adolescent Hub
This website provides information about healthcare transition resources specifically for young people aged 12 and above. You can find more details on their page here: Adolescence Hub
Their guide to transition can be found here: Transition
Alder Hey Children’s Hospital in Liverpool have made a comprehensive guide.
While each children’s hospital will do things slightly differently, most NHS hospitals will follow a similar process.
For information visit: Transition
They have also created a checklist: Ten Steps to Transition
Alder Hey Children’s Hospital in Liverpool have made a comprehensive guide.
While each children’s hospital will do things slightly differently, most NHS hospitals will follow a similar process.
For information visit: Transition
They have also created a checklist: Ten Steps to Transition
Together for Short lives have created a guide for young people.
This guide is designed for you as you look ahead to adulthood. It aims to help you explore your options and plan for your future in key areas such as education, employment, and living arrangements, as well as other aspects of your life that are important to you. Our goal is to empower you to ensure the care and support you need is in place, allowing you to live your life to the fullest.
Download here: Young Person’s Guide
They have also produced a Checklist for Good Transition to assist with the process and conversations.
Download it here: Checklist
Visit their website here: Together for Short Lives
Together for Short Lives have produced a guide to transition for parents.
It helps parents understand the transition of young people with medical needs from children’s to adult services. The process typically starts around age 14 in England, gradually shifting decision-making to the young person while supporting the family. It covers planning for healthcare, social care, education, housing, and employment, all centered on the young person’s preferences.
Parents should be aware of changes in their legal roles and available resources like the Education, Health and Care Plan (EHCP) to ensure a smooth transition.
Download here: Parents’ Guide
Visit their website here: Together for Short Lives
The charity Whizz Kidz have created a guide to support young people who are wheelchair users to access university.
The A -Z was written by young people, for young people.
Download the guide here: The A -Z of Going to University