Following our conversation in clinic today, as you requested, please find below comments from myself and my son about the ready steady go programme and the transitional clinic appointments we have attended. Good luck with your conference next week and thank you again for everything.
My son has been attending paediatric nephrology from birth and today had his last transitional clinic and handover to adult services.
The ready steady go programme has been extremely beneficial to me as a parent as I have needed to learn to take a step back and adjust from being the one who speaks on behalf of my son. Having had to do just that for so many years when he was little, it is very difficult to take a step back and not do that anymore even though this is a vital step that you must take for your child to become independent. I found not speaking for him quite tricky and it took me quite a while to get the hang of it!!! It is an adjustment for the parents as much as it is for the young person. The ready steady go programme helps so much because it is a gradual process and gives you time to adjust to the new way of doing things but without cutting you out of the loop completely. It has also encouraged my son to become more confident about speaking for himself to the doctors and much more involved and pro-active in his own health and medication etc. The ready steady go programme where my son went in on his own first to talk to the team before we joined him allowed him to gain confidence and to also speak about worries and concerns which he may have felt reluctant to mention in front of his parents.
We had four transitional appointments in total with the fourth being the handover to adult services. For myself and I think my son as well the thought of going to adult services felt quite intimidating and a bit scary to be honest. We were not sure what to expect and how different it was going to be and for myself as a parent I had concerns about not really knowing anymore what was happening with my son's health and how to help him, what medication to nag him to take (he is a typical teenage boy after all) and so on.
The transitional appointments made an immense difference to the process, we feel much more comfortable about moving forward to adult services now and much less anxious about the whole process. We have had the chance to meet the adult team and ask questions and gain the re-assurance that we needed.
On the way home from clinic today we both said to each other that we couldn't imagine how awful it would feel to go straight from paediatric clinic to adult clinic without the transitional appointments as for us they have been a vital part of the transition process so that we can move on to the next chapter without feeling worried, anxious and stressed and this is very important as it then becomes a positive step for everyone involved.
Patient's Thoughts
I truly believe that the ready steady go programme was vital in boosting my confidence to attend the clinic by myself and allowed me to prove to my parents as well as myself, that I could manage alone, if it wasn't for this programme I wouldn't have learned more about what my health condition is and what each medication does. The transition clinics also made me more comfortable with my new team, so that there would be familiar faces in the adult clinic. Knowing that I had to switch to the adult clinic made me anxious and without the ready steady go programme, I would have just immediately been put into adult services and expected to attend clinic alone, which would have felt extremely overwhelming and difficult to go through, but because of it, me and my mum are both prepared and ready to enter the adult clinic, the ready steady go programme really taught me to be more responsible and I am a better and more independent person because of it. I think that the majority of young people like me would massively benefit from being part of the ready steady go programme.