By Beth Dillon (she/her)
The term ‘transition’ has numerous meanings, however in this context it refers predominantly to the move from paediatrics (children’s) to adult services. This process is usually completed around ages 16-18 but often starts as young as 13. It can also refer to the move between different services for instance in my case, from Leeds to Glasgow. All aspects of care move in transition so not just doctors but also all associated care such as physiotherapy and is complicated even further when multiple specialities are involved with each service requiring a separate transition. This move can be a very turbulent and stressful time, going from familiar environments with professionals you have spent years building up trust with, to strange new places with complete strangers. Often this process goes wrong with young people falling through the cracks or disengaging from healthcare and unable to access care. This can have far reaching impacts on young people both regarding medical care and wider reaching effects on social life, education, and their mental health. All of this is based upon my experiences and those who I have talked with and I am aware I do not speak everyone.
It is perhaps no surprise that transition can result in a rocky road for people’s medical care for several reasons. It can feel very strange to ‘start again’ with new people, particularly if the move is from paediatrics. In my case I had known many of the same professionals for almost 16 years, so I trusted many of them, or at least knew which ones I trusted and who I did not. As with any healthcare encounter it can feel very strange to be telling a stranger personal information, particularly when you know you may have to make this a long-lasting relationship. This can lead to you withholding information (even though in the case of your health, honesty is the best policy!) which can lead to deterioration in potential problems. It is also mentally draining to explain many years of medical history and it can get very frustrating at times. Due to every department operating differently, these emotions are often coupled with the both the mental exhaustion and trepidation of trying to get to know and understand how to navigate a new system; something which takes time and effort. Finally, this all takes time, referrals to other adult specialities from paediatrics all takes time, often many, many months. This often can lead to discontinued care and uncertainty, which can again cause potential deterioration in symptoms.
The change of environment can also be a big change. Paediatric departments, unsurprisingly, are set up for children and whilst this can often leave you feeling like a bit of ‘ big baby’, over time it can become quite comforting with its cheery atmosphere and bright colours, not to mention its familiarity. In paediatrics it is not uncommon for you to often be sat with others your own age which is a big comfort. The move to adults can feel quite daunting, you often go from being the oldest in a waiting room to being by FAR the youngest, leading you to feel very out of place. Often adult wards and departments are very depressing by comparison to paediatric which can take a bit of adjusting. Adult departments and doctors are far more functional; appointments go from being 45-minute affairs to 20-minute speed consultations and in my experience adult doctors can often lack skills talking and understanding young people. This is all perfectly natural and makes sense however it does take a lot of getting used to. Again, this all takes a lot of mental capacity, learning how to these new places, adjusting to a new way of operating and communicating and dealing with strange new emotions all requires learning new skills. This can be unsettling, and I found that I was incredibly grumpy and short tempered throughout this whole process.
However, despite this rather gloomy tone, it is not all bad news, rather quite the opposite!! Often adult teams are better equipped to detail with problems which affect older young people such as employment and independent living and may have access to services which can help with this. There are also far more treatments licensed for adults which again widens options. Coupled with the fact that as there are simply more adults with health problems than children there is a higher probability of healthcare workers having worked with a greater variety of problems. Likewise, the move to adults, whilst daunting at first can be a fresh start, an opportunity to take stock and make changes which in the case of chronic illness is valuable. There are more treatment centres for adults which can mean that often you end up closer to home resulting in appointments taking far less time which is beneficial for both your education/ employment and social life.
Equally a lot is being done to help with this process. Particularly in paediatric departments there is a understanding that this process needs great improvement and new research and awareness is happening all the time. As a result new schemes such as ‘Ready, Steady, Go’, where young people work with their specialist nurse to ensure they are fully prepared and have all the skills needed to manage their condition and medications successfully and independently. This begins at 13 and is a gradual process rather than a sudden ‘dive in at the deep end.’ I was also incredibly lucky to have access to a youth worker who worked solely in the rheumatology service both in paediatrics and adults who I cannot praise enough. Among other things their role was to tackle the more psychosocial aspects of care and they were the main person who supported the transition process. Many more departments across the country are now being able to have access to a youth worker which is something that would have been unfathomable 10 years ago.
So all in all whilst there are issues with this process improvements are being made and whilst you are in the middle of it, it can be incredibly stressful there are benefits.
What can friends do to help…
Listen and be patient- as mentioned this can be a highly emotional and stressful time, for the whole family and it is not always plain sailing. An open ear can go a long way. Equally at times, I’m aware I was a nightmare to be with and this isn’t excusable– You don’t have to be around someone whilst they are being like this and often calling them out on it can be really helpful or simply walk away and come back later – don’t take anything to heart but please be patient.
Act normal - whilst so much is changing just acting normally and doing normal things such as socialising can be a big relief.
Offer to let the other read your notes- across this period there are understandably a lot of appointments to attend however this can mean that keeping up with school work can be a bit of stress, particularly as this often occurs in exam years. Even filling someone in on what was covered in lessons or letting them read your notes can be a big help.