Loretta Riley is Advanced Social Worker at the Queensland Haemophilia Centre, Royal Brisbane and Women’s Hospital

I am in the process of writing a booklet for young adults who have transferred to the Royal Brisbane and Women’s Hospital.  When I was asked to utilise this knowledge to write an article for National Haemophilia, a colleague of mine at the Lady Cilento Children’s Hospital asked me whether I noticed any parallels between writing this booklet and the process of transition. After thinking about it for a while, I realised that there was.
Before I share my learnings, for those who may be unsure of what ‘transition’ is – it is a gradual, coordinated process which involves a young person, their families or carers and health professionals, which results in a young person’s care being transferred to (in our situation) the adult Haemophilia Treatment Centre.


In writing the booklet, I read a lot about what other Haemophilia Treatment Centres in Australia were doing and looked at resources that Victoria, Canada and Ireland had already published.  I spoke to people who had gone through the transition process and found out what they wish they had known about and I asked staff what information they thought was important. 
Just like writing the booklet, transition requires some preparation and planning.  No doubt, through your time with the paediatric Centre, staff there have been preparing you to take an active role in your treatment. They have probably started to ask you more questions. You may have been taught to do your own infusions. None of these things happened overnight.  There was some planning and some preparation involved.  
Planning ahead allows you to practice some things before your care moves to the adult hospital. You can practice being prepared for your appointments, for example having all your information up to date in MyABDR. By having a list of questions to ask or things to remember that you take with you to your appointments, it can help with remembering things that happen months earlier and may also help you to feel more confident. These are some things you can practice in the years before you transition to the adult Centre and will help you in your clinic appointments.
Some Haemophilia Treatment Centres across Australia have a shared clinic once a year where you get to go to the adult hospital and meet the adult Centre staff with the paediatric Centre staff there at the clinic or you might go to a day or night event where you meet the adult Centre staff and maybe get a tour of the hospital.   All of this helps you with preparing for the transition to the adult hospital. 


In transition, as in many areas of life, it is helpful to set goals and you can do this early as well.  There is no need to set a lot of goals to achieve before you turn 17 – some you will already be working on, some you can keep working on when you transition across to the adult Centre.   In writing booklets, this article, in my work, it has helped me to meet timelines, especially when I am feeling a little overwhelmed.  
It works best when I break the goals into smaller goals, which are more manageable.  You may have heard of SMART goals.  Goals work more effectively when they are Specific, Measurable, Achievable, Relevant/Realistic and Time Bound. So, for writing the transition booklet, I had a grand plan to have the booklet completed, printed and sent out by January (I started it in late September).  This wasn’t realistic in the end. I didn’t factor in all the extra research I needed to do or the processes involved in having it reviewed. I also didn’t have uninterrupted time – I had to keep doing all the other bits of my job. So, I reviewed my goals, fixed up my timeframes and looked at it more realistically. We understand that sometimes things happen beyond your control.  
So, a transition goal might be going to a clinic appointment on my own. So if we break it down into a smaller goal to assist with achieving this, one example may be:
  • Specific – I will ask the paediatric Centre doctor one question
  • Measurable –  I will do it at my next clinic appointment at the Children’s Hospital
  • Achievable – it is something I can do.  I will write the question down and take it with me in case I get nervous. 
  • Relevant/Realistic – The doctor always asks if I have a question and taking this step will help me feel more confident talking to the doctor on my own
  • Time bound – I have an appointment in 3 weeks, so I can do it then.    
It also may help if you are particularly nervous to practice with a family member.  


remember post-it note
I usually have a number of projects, phone calls, appointments to do all in the same week or even same day. Sometimes, I forget to do some things that I had planned to do, so I have a number of strategies to help. In writing the booklet, I booked appointments into my calendar, wrote myself ‘to do lists’ and ticked them off when I completed each task. I also used post it notes (which were helpful when they stayed where they were supposed to). The same ideas can be applied to preparing for transition and beyond.
Writing appointments into a diary, on a calendar or into your smart phone calendar are all helpful tools (as long as you regularly look at your diary for example!). Using the MyABDR app or website also helps you keep a track of what treatment you have had, whether you have had any bleeds and what your stock level is like. Parents or other family members may be able to assist you with this in the beginning. This also helps with being prepared for your clinic appointment! You might already be using some tools to help you with study, remember when you need to do your part time job or where and when your sport fixtures are happening.  A number of the things you do to help you remember these things can be used to help remember your appointments and other tasks you do to look after your health.  


It took me a few goes at writing the booklet to get it to a point where I was happy with it, and that was even before I showed anyone else. There were things I forgot to add in, some things changed while I was writing it and I forgot to take them out. Other people are now reading it and they have suggestions to make it even better.
It is the same in transition. You may need to practice things a few times (sometimes many times) before you feel confident. The staff at Haemophilia Treatment Centres understand that you are learning. We all make mistakes, we all have times when we forget to ask or tell our doctor/nurse/physiotherapist/social worker/psychologist/counsellor something – and we usually remember it as we are going home or sometimes just as we have walked out the door, or hung up the phone. Sometimes we need a little more time to understand what’s being said, or we need to practice the technique. It is OK to need more time to practice or build your confidence or not do something perfectly every time.


girl on the phone
In writing the booklet, I wasn’t (and I still am not) an expert in transition. So, I needed to ask for help. Sometimes it was easier to ask (for example, asking about other Centre’s transition programs) and getting some information from someone I had heard speaking about transition.  Other times, the people I asked were busy. But this didn’t stop me as I worked out that it was important to ask for help and I know that my booklet will be much better because I asked other people for help. Dr Timothy Sharp (a psychologist who specialises in happiness) has written that one of the most powerful tools for living a happier life is to “ask for and accept help”.
It is the same with transition. It is not a journey you have to do on your own. Just like climbing Mt Everest – you have help along the way. The skills you develop which will help you with transition start before you even realise it. You learn them from your parents, from school and from the Children’s Hospital. You are learning to become more independent (although I think maybe the correct word is interdependent) from when you are small. None of us can do everything on our own and sometimes we get stuck, and we need some extra help.  
If we use the goal above of ‘going to a clinic appointment on my own’: you might have been working towards that goal, asking more questions on your own, you might even have time with the team on your own without a parent for some of the appointment. But, you might need to have some surgery or some dental work done. Asking a parent to come to the appointment where you talk about this with the Haemophilia Treatment Centre is a positive thing. They can help you remember what you have to tell the Haemophilia Treatment Centre so they can give the best advice. They can also help with remembering what you need to tell the doctor or dentist. They might need to help you with the logistics of getting home from that appointment.  It doesn’t mean that you haven’t met your goal; it means that you understand when you need help and know where you can get help from.  
Health professionals are like Sherpas on Mt Everest. We help you make the journey – sometimes we give you more help, like putting a ladder across a crevice (which might be like helping you achieve your goals – or even helping you write down or think about your goals) and sometimes we are there just to support you along the path.  
We understand that there may be a lot of changes for you all at the same time – with leaving school, starting a new adventure with further study or work, perhaps moving out of home, learning to drive and also moving to a new hospital and treatment team. The Children’s Hospital team will have been preparing you during your time with them, and moving to the adult Hospital team is another step in this journey. We are all here to help make your journey as smooth and as safe as it can be. Hopefully as you can see, the skills you learn can be used throughout your life.


The Royal Children’s Hospital, Melbourne. Transition: For young people   
Irish Haemophilia Society: Transition  

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