Page 64 - SEN115 - November/December 2021

Spina Bifida/Hydrocephalus
Growing into adulthood with
Spina Bifida or Hydrocephalus
Iona Campbell highlights the need for early preparation as people with Spina Bifida or Hydrocephalus come to the post-school stage of their lives.
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With hormones and homework controlling the day- to-day, being a teenager and thinking about the future is challenging for most people. For citizens with Spina Bifida and/or Hydrocephalus (SB/H), and other long-term health conditions, this period is made even more demanding by the necessary transition from paediatric to adult health care services. Advances in healthcare mean that more people with SB/H are living into adulthood. With this comes a variety of life transitions for citizens and despite a decrease in mortality, ageing means there are increased comorbidities for individuals. Thus, a supportive and holistic transition process in the teenage years is paramount in setting up citizens with SB/H for a future in which they can thrive and receive the support they need. Spina Bifida Hydrocephalus (SBH) Scotland is advocating for improvements to the transition process across all sectors.
“Advocating for improvements to the transition process across all sectors.”
In terms of education, 40% of young people with a long-term condition are worried about leaving school due to a lack of support, lack of routine and feeling that they must cope on their own. ARC Scotland demonstrates that parents concur with 90% of them being “effectively unaware of any formal plan for their child’s transition” and 61% being “either ‘fairly’ or ‘very unhappy’ with this. SBH Scotland service users have
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