Young people with sickle cell disease eventually transition to adult healthcare
Sickle cell disease is a lifelong condition that people are born with.1 You’ll have been supported by a healthcare team throughout your childhood and teenage years. But, at some point, young people living with sickle cell disease move (transition) from their childhood doctor (paediatrician) to an adult healthcare team.2,3
Planning and support will be offered before, during and after transition to help make it a positive experience in which you feel like an equal partner. Your feelings and care preferences are listened to, and you should have the opportunity to meet your adult healthcare team before you transfer to them. In fact, it’s considered so important that you’re comfortable with moving to adult care that special transition healthcare teams and care pathways have been created to help.3
Here, we look at ways to make the move to adult healthcare as smooth as possible. This can help you plan ahead for the transition. If you’ve recently entered adult care, you’ll also find resources and tips to help you settle with your new healthcare team and learn how to manage your condition more independently.
Teenage years are a time of change
Everyone’s teenage years are full of changes – your body is growing and changing, and you’re working out who you are and how you see the world too.4 It’s also a time where you may become more independent and start thinking about your future.4
Of course, if you’re living with sickle cell disease, there are likely to be changes to your condition and how you manage it at this time.4 You may also begin to play a bigger role in managing your sickle cell disease than you did as a child.4 With all these changes, it’s really important to keep talking with your healthcare team.
Moving to a new healthcare team can be an added challenge at time when you’re already going through change. People find it tough changing from their childhood healthcare team to an adult healthcare team for many reasons4:
- It may feel uncomfortable to leave your familiar doctors and nurses
- It means taking over responsibility for your own care and managing your condition more independently
- Your feelings toward healthcare may change, and you may sometimes get tired of all the things you have to do to manage your disease, like taking medicine or visiting your doctor
By planning ahead, you can be prepared for any challenges and this can help things go more smoothly. You can also think about and talk to those around you about any extra support you may need at this time.
Settling into adulthood with sickle cell disease
Whether you’re about to move to adult healthcare or you’ve already made that move, let’s look at how you can get up to speed with how things work in adult healthcare and take charge of managing your condition.
Your healthcare team can help you get comfortable with how your care will work, so you might like to ask them any questions you have at your next visit.
You might also find the following tips useful:
- Join a support group for young people with sickle cell disease. You don’t need to go through the transition alone
- You are already an expert on how sickle cell disease affects you. Keep learning about the condition and different ways to manage. This website is a good start. Check out our Community page for links to other organisations where you can learn more
- Your paediatrician may be able to recommend a sickle cell disease organisation in your area which may offer you further support
- If you find you sometimes forget appointments with your healthcare team, try setting reminders on your phone or adding it to your calendar with an alert ahead of the date
- Keep a journal that documents your medical care. That way, you can give it to your new healthcare team so they have all the information they need to provide you with the best possible care. Take a look at our Wellness journal and print off your own copy to keep as a useful record.
Join the Community
Supporting your teenager to transition into adult healthcare
Transitioning to adult healthcare works best when it’s seen as a gradual process that doesn’t end until a person feels comfortable and settled in adult care.2,4 It takes time to build independence and learn to advocate for yourself and your health. So being a trusted adult to support during transition is a really important role.2
If you’re caring for a teenager with sickle cell disease, you might like to work with your child’s doctor to set up a plan that eases your child into adult care and slowly teaches them to manage their condition more independently.
Your child’s healthcare team will develop a tailored transition plan and discuss the process with you. The plan may vary, depending on your location, but should2:
- Plan to allow plenty of time for preparing to move to adult healthcare
- Involve the young person living with sickle cell disease, so they can ask questions and make decisions
- Include information about services and support available
- Help build a relationship with the new healthcare team before the move is made
Transitioning from child to adult healthcare can be challenging
but you don’t have to go through it alone. Working with your current healthcare team and joining a support group for people who go through the same experience can help make the process as seamless as possible.
- Top tips for self-management
- Your wellness journal
- Setting goals that work for you
- Getting the most out of your healthcare appointments
