In this blog post, AYPH’s youth intern Angela Baird describes the process of transitioning between child and adult health services. She discusses the impact that negative transitions can have for young people with long term health conditions and advocates for more guidance and standards around transition.
Transition is not a single event, but a process. Somewhere between 29% and 34% of 16–24-year-olds have a long-term physical or mental health condition, disability, or illness, with many of these young people also experiencing complex co-morbidities. With so many young people living with long term health conditions, the impact of not receiving developmentally appropriate care – during a period of their lives where they often are experiencing lots of change and transition personally – is immense. The failure to address their medical, psychosocial, and educational needs not only has negative effects in the short term, but also on their long-term health outcomes.
Guidance on effective transition exists, but is implemented very inconsistently, partly due to a lack of incentive to prioritise its implementation. It is unclear as to whether responsibility lies with paediatric or adult services, and professionals on both sides generally lack the training to implement this guidance properly. This lack of a national strategy means that only about half of young adults and adolescents who have childhood chronic disease receive any preparation for the process of transferring between services – it is clear that these young people are being let down.
This is also a major contributing factor to young people getting lost in the gap between paediatric and adult health services. The variability and inconsistency in cut off ages for services means that young people often do not receive the care they need. Where young people nearing the cut off ages are seen by paediatric services, they can be rushed through, and either not transferred to adult services at all or are not prepared properly for this transfer. The onset or worsening of many conditions happens in this age range, which therefore can have a particularly detrimental impact for certain groups of young people. For example, girls between the ages of 17 and 19 have the highest likelihood of having a mental health disorder, so they are particularly susceptible to getting lost in this gap. As a result, these young people are often left with little to no knowledge of how to manage their condition and care and inadequate skills to navigate adult health services and advocate for themselves, which will undoubtedly have an impact on their health outcomes. For more information, please refer to AYPH’s recent publication on improving access to secondary care for young people.
There are numerous examples of good practice, and there are many proposed solutions and good standards. However, in a healthcare system that is so massively overstretched, how can we ensure that these are implemented? Evidently, there is a need for a greater focus on a collaborative approach between paediatric and adult services, and shared decision making with the young person to create a plan that takes into account their individual needs, with the flexibility to evolve with them as they transition through different life stages. Arguably, it is necessary to move from guidance to standards, as well as driving systemic change on a national level, which takes into the available evidence and learns from existing good practice. Including metrics on evaluation of transition and young adult and adolescent health outcomes in evaluation of services is essential in making good and effective transition the priority it should be.
Many young people with long term health conditions are currently being failed by the system, and it is vital that things change, because effective transition produces young adults who are empowered to manage their own health, which benefits the whole of society. To use mental healthcare as an example, only 24% of young people transfer from CAMHS to adult mental health services, of which half go on to disengage from services. With such a low proportion of young people being effectively supported to receive the care they need as they transition to adulthood – which could potentially lead to the worsening of their conditions, and prevent them from participating fully in society and leading the most fulfilling lives possible – the importance of good transition programmes on young people’s physical and mental health is evident; not only in the present, but throughout their lives, and that of future generations.
Angela worked with AYPH as a youth intern from September 2022 to March 2023 and continues to work with us to co-deliver our training sessions. Angela worked with two other interns to co-produce our training sessions on health inequalities and ethical engagement with young people. Angela has also worked with Barnardo’s to develop mental health initiatives and she is currently studying for a degree in Actuarial Science at the London School of Economics (LSE).