Page 65 - SEN115 - November/December 2021

Spina Bifida/Hydrocephalus
About the author
Iona Campbell is a Clinical Research and Innovation Assistant with Spina Bifida Hydrocephalus (SBH) Scotland who worked closely on their Transitions Project. She is also studying Human Rights and International Politics at the University of Glasgow.
sbhscotland.org.uk @SBHScotland @SBHScotland
@SBHScotland
also indicated being ‘railroaded’ into certain decisions about their future because of their condition, such as going to college.
For young people with long term conditions, planning for the end of school also comes with planning to transition from paediatric to adult healthcare services. Unfortunately, this transition through healthcare is no smoother than that of education. Many families report that they have found the
process confusing and frustrating with little preparation tools and support provided throughout. It is suggested by ARC Scotland’s ‘Principles for Good Transitions 3’ and NICE’s transition guidelines that transition preparation should begin in early teens, or around two years prior to transfer of services. The reality is that some SBH Scotland service users will still be with paediatric services into their late teens - well after leaving school - and into their early twenties, due to a lack of preparation and fear of moving over to adult services.
“Staff in adult services are perceived as lacking specialist knowledge and showing little respect to the young person and their special needs. Family doctors (GP’s) are often excluded from communication flows, regarding ongoing care, and an encounter with primary care providers often results in frustration as the same key information is sought repeatedly”.
Often paediatric doctors will keep young people on longer to protect them from the tumultuous transition journey. Whilst this is done with the best of intentions, it encourages a lack of independence and self-management skills. In addition, it leaves future healthcare professionals out of the loop meaning that they do not understand the history of the young person on a holistic level. Therefore, when the young person does eventually transition, they receive below adequate care.
“We started nine months before his birthday but it wasn’t long enough – lots of reports to coordinate” - Quote from parent about the transition process.
Ideally, SBH Scotland would like to see most young people preparing for the transition process at 14 and beginning
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■ Transition board game. senmagazine.co.uk