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Thursday, 21 June 2018


It comes around for all of us, the paediatric services are no longer where we can be treated, life has moved on all before your very eyes. Transition is something that is a given, it has to happen.

If you are a young person facing the move to a new service, you may be feeling all kind of emotions. It may not really be bothering you, something that just happens, it is what growing up is all about. Others may feel worried about something new in your life, you've got your routine sussed in paeds, you have just got to the age where they really listen to you, you feel more valued with your words.

Parents, you may be worried that you will no longer be a part of the care process, you may feel like you cannot give up this responsibility, what will you child be like when they are no longer classed as a child in the NHS? You may feel a weight lifting from you, you no longer have to continuously monitor your child to report back to the doctors when there is a change.

Whether you are the tranistionee or the parent of a child who is transitioning, I hope you will be able to read this and start to feel okay about the process. It is so understandable to be feeling all kinds of emotions, it's change and change can spark a whole plethora of emotions.

'Your child is going to start the transition process' those words you think you will never hear (or not for a long time). The idea of moving to a new team can seem like it is many moons away. Parents you may not feel like you or your child are ready to move on but trust me when I say your team will not have suggested it if they did not feel your child is ready or without good reason to start the process.

With me I was 16. The younger side of the age range for transition which is roughly 16-18. My CF was getting very complex, I had just been diagnosed with Cystic Fibrosis related Diabetes and my health was declining. I didn't feel ready to move but I knew my team had suggested it because they didn't have the resources or knowledge to treat me to the best of their ability. They felt moving me to an adult clinic where their focus is on CF day in, day out was the best chance for me to get the right treatments I needed to progress.

My transition story isn't the conventional story. I know some people fill out the 'Ready, Steady, Go' packs but I never got the chance. My transition was less about was I ready? But more about you have to go to help yourself. Looking back it was 100% the right call. In the moment however, it felt like they didn't want to deal with my problems anymore. (That was not the case but as a 16 year old going through the stress of GCSE'S and picking A levels it felt like an impromptu decision).

I wasn't moving fully into uncharted territory. A consultant from the adult team had sat in my appointment with my paediatric team so there was a familiar face. I had also been to the adult ward to see where I would go as an inpatient and also got a chance to meet some of the CF nurses. They suggest these things to familiarise yourself with your new team. I found these things useful but didn't take them all that seriously in the moment as I keep saying throughout this post that it just doesn't feel like something that will actually happen. These things did actually really help when I actually transitioned over, it mean't some of the team recognised me and it wasn't like starting again. It was good for me to be able to visualise the place I was going to next, instead of having times where I could just wonder what it would be like and start to imagine something completely wrong about what it would be like, it allowed me to anchor myself in reality and truth, instead of letting my thoughts wonder.

I wasn't very well in between moving from one team to the other. I had to go and see the adult team because I wasn't very well, way before they got my letter of referral. They were very welcoming and friendly. They have dealt with this so many times they really know what you are feeling and how to make it easier for you and your parents.
I had to be admitted as an inpatient for 6 weeks. That is really how I got to know the team well because I was with them 24/7 for 6 weeks.

My first stay as an inpatient was strange. It was the first time I had stayed in a hospital on my own as my mum would stay with me when I had to go in to keep me company as paediatrics wasn't really geared towards youth. Your first inpatient stay somewhere new is going to feel strange. That's normal. It is a whole new system and place, new staff and new rules. It was odd not having my mum around to chat to or to just be with but it made me interact with the staff more. Not having my mum to lean back on made me chat to nurses and doctors in ways I hadn't. Seeing them not only as their role but also as who they are. Don't get me wrong, this did take a while and I hadn't perfected it in my first visit, but as time goes on it is something you get better at.

I also found my first inpatient stay was a shock to the system, they were asking me what tablets I took on admission and then if anything wasn't right or tablets were given at the wrong time I had to be the one to sort it out! This I had never had to face before, normally my mum would be right on top of it and sort it out before I even knew it was an issue. You again learn very quickly to do this, it is only you who can help the team improve their care and it is only you who can bring to their attention if something is wrong. They sadly aren't mind readers so won't know and I want to clarify that it is OKAY to point out if something is wrong or you aren't happy. I never once got a nurse who was upset with what I said, most of the time they were happy to be told because they are human and can miss something or do something that you aren't ok with. They don't know you as well as the team previous so it will take time for them to learn what you like and dislike but over time they will get better at remembering!

Overall, transition is something that is going to happen and shouldn't be viewed as scary. Yes, it will be a sad time but starting over with a new team can allow you to rewrite yourself if you want it to. Leaving bad habits and bad views of yourself behind (I am not saying there will be but I know there were some things about me I wanted to change for my new team). It is a time to grow and change, responsibility for your life and CF becomes yours solely.  They won't talk down to you, any treatment has to be given with your consent so if you don't like it then it doesn't have to happen. It takes time to adjust, it always will but I found the transition to adults a growing experience with my CF and really  allowed me to feel comfortable with my team.

For parents of a CF person who is nearing transition or are in the process right now. It will be a learning curve for you too. But don't feel you aren't a valued member of your childs team. Adults doesn't mean that you never have to sit in an appointment again, if you want to then you can! My mum always comes to my appointments with me. If you feel your child is unwell you can call and ask for advice, they won't put the phone down on you if they find out it is the parent calling. For you as a parent it will take a huge weight off your shoulders, for years you'll have been the one answering all the doctors questions, giving meds and making sure your child is ok. So maybe you'll still have to nag from time to time for your child to take their meds and do their physio but the doctors will be asking your child all the questions, they will be asked what medication they are on. The pressure is off for you now, it is less about how well you can look after your childs needs and more about how well your child can look after themselves.

Don't get me wrong adults won't expect you to be the perfect patient, life does get in the way and they understand that! If I can give one word of advice to anyone it would be just be honest. They won't judge you if you say that is too much or you wouldn't be able to cope with that. Be honest with how often you do your physio and things otherwise they won't be able to help you to the best of their ability. The thing I found different when going to adults is they help you balance CF with your life and they understand the pressures of adulthood and how CF can sometimes take a back seat. What I do feel sad about was I didn't get a proper chance to say goodbye to my old team.

Transitioning to adults isn't as scary or daunting as it is made out to be. I found the process to be hyped up to be something it isn't. You basically move from one dedicated and devoted set of doctors and nurses to another. What more could you ask for?

I truly hope this has helped by sharing my experience with you.
I am also more than happy to answer any questions on things I haven't touched on in this blog. (I know one of my questions was 'Can I still have numbing cream?' - The answer to that is yes!) via twitter or facebook (Patients and Parents).

I am not sure what my next post will be about yet, I am always after suggestions so do feel free to suggest a topic that you would like to hear about!

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