What is Transition?
Transition is the process of moving from children’s to adults’ specialist healthcare services and includes:
- planning the move
- the actual move between services, and
- the support needed during the process.
A good transition between these services is important to make sure that you do not ‘fall through the gaps’. This will keep you as healthy as possible.
When Will It Happen?
Together with your parent, guardian or carer, you and your current doctor will begin to discuss the best time for you to move over to adult services. This may start from when you are around 11 years old although when you are a little older is normal too. You may want to talk together about:
- A good time for making the move (i.e. avoid other stresses such as over exams periods, if during any other big changes are happening in your life)
- any worries or questions you have about moving
If you are diagnosed with your condition as a teenager, you may go straight into adult services and therefore won’t need to transfer.
If you have a learning disability, moving between services may happen much later, or you may stay in children’s services. This will mainly be based on how much you understand about your condition.
At the beginning of the Transition process, you should expect to:
- be given the name and contact details of your ‘key worker’
- be given a Transition Care Plan and a Personal Transition Folder containing important contact details, medical details, education/social care needs, future goals and emergency plans.
During the moving period, a doctor from adult services may attend several of your appointments with the children’s services. When you move to adult services, a doctor from children’s services may do the same. This should help you to become familiar with the staff who will be caring for you in adult services, even if these will be in a different hospital.
Between the ages of 16-25 you should be seen in a Young Adult service, which is usually part of the adult services. For the first couple of appointments you should see the same doctor so that they can make sure that you settle in well to the adult services environment.
Your ‘Key Worker’ will be your ‘go to’ if you want to ask about any weird symptoms, worries, or need help with changing appointments, etc. This may well be a specialist nurse (Clinical Nurse Specialist or CNS).
Where Will I Go?
If you have a parent with the same condition as you, you may move to the same hospital team that cares for them. You might be happy to see the same doctor as your parent, or perhaps you’d feel more comfortable seeing someone else in the team. This is a personal decision, and different for everyone.
“I think the main difficulty for me was really remembering to get on a different train rather than I think there was a few times I sort of went on autopilot to go to Royal London and I was supposed to be going to Barts but I think I’ve been quite lucky with my mum having been at Barts for quite a while before I transitioned so I’d met a fair few of the doctors already and at AMEND events and everything like that so I’d sort of met and got to know people so transition was quite easy for me really.” (Cameron, aged 21)
If you are going to university, you might want to think through whether or not you transfer your care at that point to a hospital near your family home, or in your university town. There is more about making that choice here.
Adult services can be busy and hectic, and might feel daunting to start with. If you feel frustrated or overwhelmed at all, this is not unusual. In time, it can feel good to leave behind children’s services, especially if you had been feeling a bit old to be there.
You are probably used to your parent/carer coming into appointments with you, and this might feel helpful initially too with your new team. In due course, you might want to go on your own, or with someone else you feel close to. Your parent might find this challenging to start with, but you can always talk through together before your appointment anything they think you might need to mention.
Remember: Even if a parent does go with you, you can always ask for a few extra minutes during your appointment to speak with your doctor/nurse privately if something is on your mind.
Keeping on Track
When you are feeling ‘ok’ (or are worried you aren’t) it can be tempting to avoid or forget appointments, scans and tests, etc. Do remember that even though it may feel like a ‘hassle’ sometimes, regular check-ups are part of living well with your condition over the long term.
You can ask your Key Worker or nurse specialist for help to reschedule appointments if they clash with social events, interviews, or exams, etc. The aim is always for your hospital care to help you get on with your life and not interfere with it more than absolutely necessary.
Taking on responsibility for your medicines can also feel a pain at times. When you are feeling ok, it can be hard to remember to take them on time and reliably – but do remind yourself that they are part of keeping you well. A mobile app like Pillbox (getpillboxapp.com) or a simple alert on your phone can help remind you to take them if you keep forgetting. You can also use this to help with ordering repeat prescriptions before you run out.
Your hospital doctor or nurse will direct much more of their conversations to you now, rather than your parent/carer. Letters and phone calls will also now come to you directly. Don’t forget to make a note of appointments in your phone, or on a calendar.
If you find appointments difficult at all – practically or emotionally – let someone know. This might be a parent, your doctor or specialist nurse, or someone at AMEND. You may find it useful to download and use the Coming to Clinic ‘Your Issues’ sheet from the Explain Me website.
The free AMEND Counselling Service is also available to you to talk through any worries or difficulties you are having. Sometimes, just one session can make a difference. There is more about that here.
Hospital care and monitoring is there to help you get on with your life, not to get in the way of it!
Youth Group Video
AMEND Youth Group Discusses Changes