Emma, who is one of our Hive Ambassadors, wrote this blog for CLDF describing her journey from the children’s clinic to the adult liver disease services, as well as providing some useful tips for other young people currently going through the transition.
I thought it would be good to talk about the transition from the Children’s clinic to the Adult’s clinic in this first blog. I hope that whether you are still a few years from transitioning, preparing to transition or you already have done so this blog will be of some use to you. In this blog, I will be discussing what it means to transition, how to best prepare as well as giving you some top tips for making the most your appointments now you will have greater independence over your condition.
So, what is transitioning?
Transitioning is the process of preparing, planning and moving from the Children’s to the Adult’s service at your hospital. Although this is an individualised process dependent on your unique circumstances, the usual age for this to take place is 16. Transitioning encourages you to be independent and take control of your condition, for example, you may start to see the doctor on your own once you feel comfortable enough to. Of course, it can seem quite daunting changing clinic and leaving behind the safety of the doctors and nurses you may have known for years. Having transitioned at Leeds hospital at the age 16, I have been going to the Young Adult/Adult clinic now for seven years and I like to think I am pretty clued up about the process. I hope by sharing my experience, advice and top tips for transitioning, I will be able to make some of you feel a bit better about the whole process.
Preparing to transition:
Generally, most clinics are aware of or use the ‘Ready, Steady, Go’ programme. This is a programme that you will be taken through with your healthcare team to ensure that you are well prepared to make the transition from services. This programme will cover things like teaching you more about your condition and medications, ensuring you know your emergency contacts and when to ask for help, understanding how your condition might affect your future and career, making you are aware of support networks and making sure you understand the importance of a healthy lifestyle.
One thing that I wish I did more of when preparing to transition was asking questions. So I’m advising you now to make sure that you are asking enough questions. If you are unsure of what to ask, I have provided a list of some:
- What is the plan for my transition?
- What will be different at the adult service?
- Can I meet the nurses before?
- Is there anything else I need to know before I move?
- Are there any other young people I can talk to?
Making the most of your appointment:
I’m sure that you all have your own tips for making the most of your appointments and I would love to hear them if you to. Here I am going to address some of my top tips, especially for once you start seeing the doctors alone.
- First, and very importantly, ask questions. There is no such thing as a silly question and you can’t ask too many. If you are unsure of something, ask. This is something that I am making a conscious effort to do more of. You are starting to become more in control of your health and it is important that you know as much as possible.
- Second, make the most of your support system. You will see specialist nurses and often youth workers and CLDF who are all there to support you. Don’t forget that it isn’t all just about looking after your liver, they can support you with things like mental health, careers, education, relationships, travelling and sexual health. Make the most of these people. They are there to help you will all of your concerns, not just the ones about your liver.
- Third, get a diary that is dedicated to your appointments. If you are only going to the hospital every six months like me or will be soon, make a note of things that you want to discuss between your appointments to stop you from forgetting. You can also take notes in your appointment too of things that you need to remember.
You will be OK:
Trust me, it’s not as daunting as it all might sound. There is a great deal of support at these clinics, such as doctors and specialist nurses as well as often a youth worker and often members of CLDF, all of whom are there to help and support you. Seven years in and I felt that my transition process went very smoothly so I’m here to reassure you that you will get used to the change.