My Health, My Way

As you get older, you start making more decisions in life – about school, friends, hobbies, and your future. Taking charge of your health is part of that journey.

We’ll support you to:

• Understand your condition
• Speak up in appointments
• Manage your medicines
• Make choices that help you feel more confident and independent.

You might hear people call this process “healthcare transition”, but really, it’s about growing up in healthcare – with the right support, at the right time.

Not everyone will manage all aspects of their care on their own, and that’s OK.
Some young people will always need help from family members, carers, or professionals. We’ll tailor the transition process to make sure the right support, information, and documentation are in place as you move forward.

Whether you’re learning to take full ownership of your care, or finding ways to take small steps, this journey is about helping you feel prepared, supported, and respected.

At Great Ormond Street Hospital (GOSH), we usually start this journey around the age of 12, when most young people move to secondary school. However, everyone is different, and we’ll move at your own pace.
You won’t do this alone – your family and healthcare team are here to help.

• You’ll learn more about your condition.
• You’ll start to speak more in appointments.
• You may take charge of your medicines.
• You’ll feel more confident asking questions.
• You’ll prepare for new healthcare services – like adolescent or adult care.

Not everyone will be able to manage everything on their own – and that’s completely OK. We’ll find a plan that works for you.

Taking charge of your health doesn’t happen all at once. It’s a journey, and we’re here to guide you along the way.

Your healthcare team are here to help you:

• Understand your condition
• Ask questions that matter to you
• Learn where to find the best, most reliable health information
• Feel confident making decisions as you grow up

To do that, we use a few tools to support your health literacy – that means understanding and using information to take care of your health.

You’ll usually have a named healthcare professional who supports you with this journey.

This might be a nurse, doctor, or key worker, depending on the team you’re seeing.

You can always ask who to speak to if you have questions about your care or transition.

During appointments, your healthcare team might ask questions about your life, not just your health. This could include things like:

• School or college
• Friendships and family
• How you're feeling
• What you enjoy or worry about.

These conversations help us understand what’s important to you and how we can support you in the best, most holistic way – as a whole person, not just a patient.

You can always choose what you’d like to share, and you're in control of how much you want to talk about.

As you get older, you may be offered time to speak with your healthcare team on your own. We’ll always let you know if we ever need to share information to keep you safe.

It’s OK if you’re not ready to talk about everything yet – we can come back to things when you’re ready.

Your family will always be part of your team – but as you get older, the balance might shift.

In children’s and adolescent services, parents usually make decisions and manage appointments. In adult services, that responsibility moves to you – with their support when you want it.

We’ll help your family feel ready too.

You might wonder:

• How will my condition affect university, work, or travel?
• What about relationships or family planning?
• Can I still do the things I enjoy?

It’s totally OK to ask. Your GOSH team knows you and can talk through what these things might look like for you – or help you find the right information.

Each team at GOSH shares information in a way that works best for you and your family. If you're ever unsure who to speak to, you can email: healthcaretransition@gosh.nhs.uk
We’ll help connect you to the right team or person.

Some young people move to:

• Adolescent services at GOSH or another hospital
• Adult hospitals outside GOSH
• Local services or GP care

Sometimes plans change and we will review things with you and help adjust your plan if needed.

We’ll make sure your new team has all the information they need – and that you do too.

If English isn’t your first language, or you need help reading or understanding information, please contact the Patient Advice and Liaison Service on: pals@gosh.nhs.uk

Some transitions are exciting. Some feel scary. Most are a bit of both.

The Transition Workbook was created by the Young People’s Forum (YPF) at GOSH, working with GOSH Arts, to help you feel more prepared and in control as you move from children's to adolescent or adult services.

In this booklet, you'll find:

• Thoughts and top tips from young people going through transition.
• Activities to help you reflect on how you’re feeling.
• Space to write down your questions, track your goals, or draw what’s on your mind.
• Advice from GOSH nurses and doctors who’ve supported many young people through transition.

You can use the workbook however you like – at home, on the ward, or bring it with you to clinic if it helps you speak up. It’s your space, your voice, and your journey.

Download the GOSH Transition Workbook (PDF)

MyGOSH is a free, safe and secure online portal that gives you access to parts of your health record at GOSH – including your clinic letters, appointments, and test results.

From the age of 12, you may be able to get your own MyGOSH account, depending on what’s right for you and your care team.

Having your own account means you can:

• Read your clinic letters
• Keep track of appointments
• Ask follow-up questions
• Share anything you're working on or thinking about related to your care
• Message your healthcare team.

You can access MyGOSH on your phone, tablet, or computer — just remember it may use data if you’re not on WiFi.

If you’re interested in MyGOSH, speak to your healthcare team about whether you're ready for your own account. They’ll help you decide what’s right for you.

Find out more about MyGOSH

MyGOSH is for non-urgent questions.
If something feels urgent or worrying, speak to your healthcare team directly, your GP, NHS 111, or emergency services.

Don’t have access to a smartphone or the internet or want to improve your digital skills?

Ask a member of your healthcare team to complete the ‘Digital Access at Home’ tracker with you. This helps us find out what support we can offer – for example getting online or with free online courses to help improve your digital skills.

When you come to clinic, you’ll be given a short check-In questionnaire – one for you, and one for your parent or carer.

These forms are designed to help you:

• Think about what’s going well
• Write down questions you want to ask
• Let your team know if you'd like to speak alone

They’re not tests, and there are no right or wrong answers – they just help your team understand what matters most to you, so they can support you in the best way possible.

You can find out more here:
Young Person Check-In Tool
Parent/Carer Check-In Tool

The NHS 'Ready, Steady, Go!' booklets are designed to be filled in at any time, at your own pace. They cover topics like:

• Medicines and emergencies
• Talking to doctors and making decisions
• School, home, emotions, and future plans

You can keep your booklet for yourself (either digital or printed out) – but if you want to, you can bring it to clinic to help guide your questions or conversations.

We won’t go through the whole booklet at every appointment, but your team is happy to talk through anything you’d like to raise.

Ready Booklet (ages 12–14)
Steady Booklet (ages 14–16)
Go Booklet (ages 16–18)
They booklets are also available in Easy Read and other languages

If you have a learning disability and/or autism, you might find it helpful to use a Hospital Passport. It’s a simple document, that you keep as a patient.

This document shares key information about how best to support you – including your communication preferences, routines, medical needs, and what helps when you're feeling worried or overwhelmed.

You can:

• Keep a copy on your phone
• Print it out to bring to hospital
• Email a copy to your healthcare team or the Learning Disability and Autism Team

The passport is yours to keep and update and it’s a helpful way to make sure staff know how to support you best.

Download the GOSH Hospital Passport (PDF)

If you need help, or think you would benefit from support from the Leaning Disability and Autism team, you can email learning.disability@gosh.nhs.uk

Our Learning Disability and Autism Team can also help with:

• Creating personalised support plans when coming to GOSH
• Making reasonable adjustments
• Planning complex admissions
• Supporting parents or carers with learning disabilities when coming to GOSH

You can read more about the team and how they support patients and families:
Children and Young People with Learning Disabilities and/or Autism