Transition is the process of moving from children’s (paediatric) healthcare services into adults’ care.

As a parent of a child/ren with a rare condition, you will probably be used to being one of the experts on their condition and their care.

You might have got to know your child’s doctors well, and they you. Where to go, who to talk to, and how things work may all feel very familiar. Moving away from that can feel very daunting.

When does transition happen?

Transition is a ‘process’ rather than an event.

There is no set age or time frame. It might be around 16 – 18, or as early as 11. Newly diagnosed young people sometimes go straight into adult services.

If your child has a learning disability/s, it may happen later, if at all. Some young people with life-shortening conditions stay within paediatric services ongoing.

Preparing to ‘make the move’

Ideally, transition happens over time in order to ‘work out’ how best to manage it for all involved. There should be an opportunity to voice any concerns and plan with healthcare professionals how to address these.

I was really worried about how it would all happen. The adult clinic nurse made it so much easier, she really took time to make sure [son] knew he could contact her, gave him the team mobile number to put in his phone etc. She really helped.

Your child as an active participant

As your child or young person grows up, helping them to gradually take on as much responsibility for their own care as they are able to is an important part of your role as a parent.

This may be to varying degrees, especially if your young person has vary according to you, your child and their abilities. Every professional involved in their care should be able to engage with your child’s preferred means of communication.

Encouraging your child might include:

• • Supporting your child to communicate with their doctor themselves, as soon as they are able to. This may be verbally, or through a communication aid.
  • Leaving some space for your child to respond first when asked ‘how they are’.
  • Checking with your child if what a doctor has just said about them seems ‘right to them’.
  • Waiting to open appointment letters together and have an agreed ‘safe place’ to put them.
  • Starting a notebook together of ‘things to tell the doctor’.
  • Helping them write on, use stickers, or draw on a ‘family calendar’ to remind you both when they have an appointment.

This helps reinforce to your child (whatever their age or abilities) that they have an active role in their own care.

Beginning active transition

This stage may happen over 6-12 months, or even longer. Start discussions with your lead doctor in good time before any move. Try to avoid times of additional upheaval like exam periods, when moving house, or just after new treatments have started.

The transition care plan should include:

• • key contact details
  • a summary of your child’s medical details and their education and social care needs
  • an emergency or ‘crisis’ plan if relevant

Settling in

Your young person will probably still need support travelling to and from appointments, at least initially.

For the first few appointments, ask if it’s possible to see the same doctor each time. This helps you all get to know each other and build confidence.

You may not always be allocated a key worker or care coordinator during transition, so do ask for one. They can help with queries about any unusual symptoms, worries, or help with changing appointments etc. They are often (but not always) a nurse attached to that clinic, or doctor.

Before an appointment:

• • ask your young person if they have anything particular they want to raise
  • be positive and relaxed about their response
  • re-affirm that they can take along a list of questions
  • let them know if they want to raise anything privately with their doctor, that they can

Your young person might want a lot of support from you one day, and not at all the next. Sometimes they may over – or under – estimate their ability to cope or manage. It can feel very hard to know what they might want from you when.

Working out when, or how much, responsibility your young person can take up (even in small ways) for their health and care takes time. It will be a very individual process between you and your young person.

As everyone involved gets to understand and know each other better, this usually becomes clearer in due course. It may also change with time.

New styles of communication

It can feel a shock when doctors speak more directly to your young person than to you.

You might be worried about how well they will or can communicate what is going on for them, or how they will describe any difficulties. Try not to ‘step in’ too much, even though this might feel hard.

If there are things you really feel the doctor should know, try asking your young person before an appointment if they think they should discuss {issue}. This may help prompt them to raise it, or the doctor to ask.

If your young person stops engaging with their healthcare appointments or self-care, you can also let the doctor know about your concerns.

New ways of relating

Both you and your young person will be trying to work out new ways of relating to each other as they get older. 

This will be not just in terms of managing their own healthcare (to the extent that they are able to) but in all sorts of other ways too.

There will almost inevitably be some challenges, anxiety and frustrations with each other along the way. However, there may also be opportunities for your young person to impress – or surprise – you.

I used to get annoyed that Mum would say to me ‘are you going to tell the doctor about  …… .’ But now I’m older, I can see it did help me talk about things that I wanted to ignore to be honest. I was not happy about it at the time though!