By Iona Campbell
Moving towards adulthood is an exciting time for young people as they embark on a journey that leads to more responsibility and independence. This time can also bring challenges for young people as they try to figure out who they want to be and what purpose they would like to fulfil. At this time, the transition from paediatric to adult healthcare can present a series of additional challenges for young people with complex conditions and their families.
Negative experiences with transition can not only be detrimental to the health and wellbeing of the young person in their adolescence, but can also lead to a continued lack of trust with the healthcare system into adulthood. There is a growing body of evidence revealing the long-term effects of negative transition experiences on quality of life and wellbeing into adulthood for people with complex conditions such as spina bifida. Covid-19 has led to even more isolation relating to transition as the process was not a priority for the NHS during the pandemic. The pandemic has also shone a light on some of the failings of the transition for young people with long-term, complex conditions. Spina Bifida Hydrocephalus Scotland have been working with service users to learn more about their experience with transition and use this knowledge to create interactive, educational resources about transition aimed at young people, families and healthcare professionals.
The current transition process in Scotland aims to be a vast improvement from the single event transfer of the past and provide a more holistic, joined-up system for young people, families and carers. However, the reality is that many families are still left feeling confused, frustrated and not knowing where to turn for expertise. Gaps in the system have emerged due to a lack of expertise with particular complex conditions such as spina bifida and hydrocephalus (SB/H), inappropriate communication techniques which do not suit the age, cognitive ability, maturity or mental wellbeing of the young person and a lack of overall understanding of the whole transition process. Overall, families feel unsupported and that they are ‘falling off a cliff’ (p. 1) into adult services. The Covid-19 pandemic has put further strain on this transition process for young people and families. Many of them have been unable to meet healthcare professionals in person and have had little joined-up support throughout the process. The system must do better for families who are often already under significant strain due to financial issues, carer fatigue, co-morbidities of the young person, lack of social interaction and struggles with mental health. The healthcare system should be lifting families up and providing a space which empowers them with direct lines to the information and expertise that they need.
With every young person, we should be striving for a successful transition which aims to maximise the potential of an individual and enhance their wellbeing and abilities within the constraints of disability. ARC Scotland has outlined seven principles for successful transition, most notably they encourage focus on person centred care, early transition planning, support up to the age of 25 and effective coordination between services. The Scottish Government does admit that barriers to successful transitions “include lack of support from adult services, poor co-ordination between services, inadequate planning and confusion around who is responsible for planning, lack of information on available options, and young people’s voices not being heard” (p. 5). These barriers are keenly felt by young people and their support network.
From our service users, we hear mainly that throughout the transition process there is a lack of empathy, planning, consistency, and expertise for their specific condition/s. We know that it is not due to a lack of compassion and care in healthcare professionals themselves, but more that the healthcare system in Scotland does not support them in improving such processes. With funding from the Burdett Trust for Nursing we saw that we may not be able to change the system overnight, but we could certainly provide useful resources to support young people and families in the meantime.
From the experiences of our service users, we have been able to put together something positive and useful. We have co-produced, with people who have been through the process, resources about transition aimed at families, young people, and carers. In addition, we have put together an online course about transition aimed at healthcare professionals for them to learn about the ins and outs of the process and step into the shoes of a young person for a while. The resources for young people and families/carers include a card game and digital stories. Through collaborative play, the card game encourages families to maximise their knowledge of transition before going through it in real life. Players must work together to get all the characters over the finish line of transition; overcoming hurdles and gaining knowledge along the way. The game is routed in lived experience and provides a resource that families can go back to any time they would like to learn more. Furthermore, the creation of the digital stories provided an opportunity for service users to re-engage with their experience of transition and share this with the world. The resource is useful for other families to see that they are not alone in their feelings of frustration and confusion towards the transition process. The stories have also formed part of the online course so that healthcare professionals can hear about the challenges of transition from people who have actually experienced it.
These resources can be accessed here.
Iona Campbell is Clinical Research and Innovation Assistant at Spina Bifida Hydrocephalus Scotland.
Image copyright: Spina Bifida Hydrocephalus Scotland.