Young people with beta thalassaemia will transition to adult healthcare
Beta thalassaemia is a lifelong condition. People that are born with it need treatment throughout their lives.1 This means young people living with beta thalassaemia will at some point make the move from their childhood doctor (paediatrician) to adult healthcare services.
Whether you are yet to make this transition, or you’ve already made it, the information here aims to help you find a way to balance living your life and managing your condition more independently in adult healthcare.
Aisha, living with beta thalassaemia major in the UK
Transitioning to adult healthcare can be challenging
Moving from adolescence to adulthood involves huge amounts of change. It’s a time where the body is changing, and people have more responsibilities and grow more independent from family. And people are often finding new interests, goals and opinions.
Tips for coping with change
- Remember that sometimes you cannot avoid or prevent a change, so it’s how you manage the change that counts
- Focus on dealing with just one thing at a time
- Give yourself a break from pressure when you can – this can be as little as five minutes doing something fun or relaxing
- Talk to your healthcare team for advice on managing transition, and ask about transition days to ease your move to your adult healthcare team
- Ask your healthcare team about talking to a psychologist if you would like someone to talk to about the changes happening to you
If you’re living with beta thalassaemia, you may find that your condition sometimes gets in the way of doing things you love, like meeting friends. It’s completely understandable to get frustrated. But remember, keeping up your care is essential to make sure you stay as healthy as possible.
Settling into adulthood with beta thalassaemia
Whether you’re about to move to adult care or you’ve already made that move, remember your healthcare team can help you get comfortable with how your new care will work, so you might like to ask them any questions you have at your next visit.
Try the following tips too:
- Join a support group for young people with beta thalassaemia. You don’t need to go through the transition alone.
- Take the time to talk to your new adult care team and discuss any goals you have for managing beta thalassaemia.
- Moving to adult healthcare gives you the opportunity to take more responsibility for your own care. But remember your family are still there to support you when you need them.
- If you find that you sometimes forget appointments with your healthcare team, try setting reminders on your phone.
- Keep a journal that documents all of your medical care in case you need to go to hospital. That way, you can give the healthcare team there 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.
- 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.
Supporting your teenager to transition into adult healthcare
Start to discuss the change to adult care and any concerns your teenager has about that, well before the actual transition to adult care.1 This gives them a chance to prepare mentally and also for you and the healthcare team to iron out any concerns in plenty of time.1 In some transitioning plans, you may find that your teenager has a number of overlapping visits between the paediatric and adult haematologists.1 For example, you might ask about the possibility of receiving a few transfusions in the adult unit to make the transition easier.
If you’re caring for a teenager with beta thalassaemia, together with them and their healthcare team you can develop a tailored transition plan and discuss the process. The plan may vary, depending on where you live, but make sure you are clear about what is happening and don’t be afraid to ask any questions that you have.
Transitioning from paediatric to adult healthcare can be challenging, but the right support can help. Your existing healthcare team can help you find your way through this challenging time. And joining a support group for people who are going through the same experience might also help.
You may feel nervous at first, but these tips can help you find your balance between managing your condition more independently and living your life.
You may like to ask if your teenager can meet other young people who have already gone through the transition for information and advice.
And while it may be hard, part of helping your child through this transition is supporting them to take on more responsibility for the day-to-day management of their condition. It may take time to get used to this when you’ve spent so long looking after them, but you can help them build the confidence they need to keep moving forward.
Resource Hub
Our downloadable tools and guides will help you manage your life with beta thalassaemia
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