Iona Campbell highlights the need for early preparation as people with Spina Bifida or Hydrocephalus come to the post-school stage of their lives.
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.
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 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 the process at around 16 years old so that they have fully transitioned by 18-19 years old. It is also advisory that young people meet their new doctors and have tours of hospitals before moving over. Transition readiness must also be taken into account; the process should only happen when a young person is ready and assessments for this have taken place. Professionals involved in the process should consider the young person’s overall wellbeing and work with a range of services to achieve a joined–up journey for the young person and their family.
Despite the will of hard-working doctors,nurses and other healthcare professionals, the reality is that there are distinct gaps in the healthcare system which make the process for many people unpleasant at best and extremely challenging at worst.
“Transition – I can’t put into words what I feel – I find it extremely upsetting to go there in my mind – it’s too upsetting. Come next year I know it’s all going to change so I don’t know” – Quote from a parent about the transition experience.
These gaps are caused by a range of problems, including a lack of expertise with particular complex conditions such as SB/H, inappropriate communication techniques which do not suit the age, cognitive ability, maturity or mental wellbeing of the young person and an overall lack of understanding of the whole transition process. Often, if a young person is to fall through these gaps, they disengage with healthcare and see their health deteriorating. Trust can be lost at this stage and is very difficult to recover. Some people may even go the rest of their lives never engaging with the healthcare system unless in the case of an emergency.
More needs to be done to achieve a process that young people deserve; a process that considers all the facets of wellness, from their mental health to their financial wellbeing. SBH Scotland received funding from The Burdett Trust for Nursing to develop their very own transition project to try and help improve the process. The organisation opted to develop interactive learning tools about transition which provide a practical step forward for people not knowing where to start. SBH Scotland’s transition project aims to give a voice to service users who then helped us co-produce tools to aid young people, families and carers through the transition process. The organisation has created a boardgame aimed at young people and families to learn more about the transition process prior to starting their journey. In addition, an online course has been produced for healthcare professionals which encourages them to work closely with other sectors, consider the rights and wellbeing of young people and to work within the relevant policy guidance and legislation to achieve successful transition support. SBH Scotland has also created digital stories where our service users tell of their experiences with transition.
SBH Scotland also works closely with educational professionals offering support in the transition of young people moving through the education system or much earlier in their early learning and childcare setting offering support, information or guidance on how to support children and young people “to be the best they can be” and to offer professionals helpful tips and tricks to support children’s learning and development.
You can find out more about SBH Scotland’s transition project or download the transition boardgame here: sbhscotland.org.uk/transitions
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.
Twitter, Facebook and Instagram: @SBHScotland
Linkedin: Spina Bifida Hydrocephalus Scotland W: sbhscotland.org.uk
T: 03455 211 811