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Auntie inspires virtual Ben Nevis Trek Challenge
Two Livingston students, were inspired to tackle Scotland’s highest mountain virtually in support of Spina Bifida Hydrocephalus (SBH) Scotland, a charity close to their hearts.
17 year old Eve Robertson, whose Auntie Shona, has spina bifida, came up with the twist on the standard Ben Nevis Trek Challenge with best friend Murren Binnie. They made a plan to walk up and down the Dean Community High School Stairs 500 times until they’d covered the 1,345 metres which they’d have walked to reach the Ben Nevis peak. In doing so they raised £629.00 for SBH Scotland.
Eve said, “Murren and I really wanted to raise money for a worthwhile cause and because of my Auntie we were aware of the great work that SBH Scotland do. Murren and I both love walking so this seemed like a great challenge for us. We’re so grateful to our school, friends and family for all of their support on the day and during the planning stages.
She continued, “The 500 laps of the school stairs took us less time than expected so we actually decided to double the challenge to 1000 laps – I guess you could say we walked up Ben Nevis twice!”
Mrs Alison, Head Teacher of Dean Community High School said, ”Everyone at the school is extremely proud of Eve and Murren, not only for raising money but also for raising awareness of the conditions they’re supporting.”
SBH Scotland was formed in 1965 by a group of parents who each had a child with spina bifida and hydrocephalus. Over 55 years later, the charity now supports over 4,000 children, young people, adults, their family members and carers across Scotland with a personalised service of support workers, groups, health check clinics, a respite cottage, play sessions, workshops and helpline.
Deborah Roe, fundraising director at SBH Scotland said; “We’re incredibly grateful to Eve and Murren for their active support. We’d like to thank them and all those who kindly donated. Donations continue to mean more than they ever have as we support families through uncertain times. Each pound donated assists us in being there for anyone affected by these lifelong, complex disabilities at a time when they need us the most.”
If you’d like to follow in Eve and Murren’s footsteps and take part in a fundraising challenge please contact Lynsey Hamilton, Fundraising Manager, on 03455 211 600 or email.
Find out more about our range of Challenges
Falkirk family inspired to raise funds for charity after birth of baby girl
A Falkirk woman, whose eight month old baby grand-daughter has spina bifida and hydrocephalus, is part of a team which raised over £1,600 for Spina Bifida Hydrocephalus (SBH) Scotland to help other babies with the same condition.
Kirsty Brown, along with her daughter’s Hannah, Kyla and stepdaughter, Rachael, created their own 13 mile walking challenge from Bainsford to the Kelpies and asked friends and family to sponsor them.
Spina Bifida occurs early in pregnancy and Kirsty’s Step-daughter, Rachael, found out at the 20 week scan that her baby, Sophie, would be born with the conditions which led to a major operation within the first 24 hours of her life to close the hole in her back.
The money raised will be used to provide personalised home and hospital support for families with new born babies who have spina bifida and/or hydrocephalus.
Kirsty says, “We were sat one evening when a plan emerged to do something for this amazing charity. Before we knew it, a WhatsApp group was created and a date was set!
She continues, “We all thoroughly enjoyed the walk, although we were very tired! My four year old grand-daughter, Maisie, joined us at different bits en route which helped lift our spirits and we were spurred on at the end because baby Sophie was waiting at the finish line.”
SBH Scotland was formed in 1965 by a group of parents who each had a child with spina bifida and hydrocephalus. Over 55 years later, the charity now supports over 4,000 children, young people, adults, their family members and carers across Scotland.
Deborah Roe, fundraising director at SBH Scotland said; “We’re incredibly grateful to this lovely family who came together to support us. We’d like to thank them and all those who kindly donated, raising three times more than their original target of £500! Because of Covid-19 we lost half of our usual income last year; donations have never meant more than they do right now.”
If you’d like to support SBH Scotland this festive season donations can be made via sbhscotland.org.uk/donate or fundraising activities can be booked for next year. Anyone interested in helping raise money should contact Lynsey Hamilton, Fundraising Manager, on 03455 211 600 or email
Online Healthcare Transition Course for professionals goes LIVE!
SBH Scotland believe one of the most important solutions for improving the transition from paediatric to adult healthcare is education. Therefore, we've created a course aimed at healthcare professionals about the ins and outs of transition.
Through our transition project we've discovered there is a lack of knowledge and understanding in the healthcare system about transition; specifically, transition planning, transition policy, the rights of young people, and about use of appropriate communication strategies based on the age, mental health and cognitive abilities of young people with complex conditions. This leads to inconsistencies in transition which result in a negative experience for young people.
There are correlations between negative experiences of transition, ill-health and reduced wellbeing. This is because we are seeing young people and their families shy away from healthcare, causing preventable complications with their health to occur.
We would like to see all young people achieving a successful and supportive transition which sets them up to thrive in adulthood.
About the Course
This course was created by SBH Scotland’s Clinical, Research and Innovation team, with support from a steer group including members from the Queens Nursing Institute Scotland, NHS Inform and Glasgow Caledonian University. The team developed their knowledge of the transition process and compiled relevant resources to make it easier for healthcare professionals to access.
The course:
- Takes around four hours to complete and would be a valuable asset to any healthcare professional who engages with the transition process or young people approaching transitioning age.
- Offers an in-depth analysis of the different stages of transition and asks learners to consider their role in this process. The course promotes a person-centred and holistic approach to transition with transition planning taking place as early as possible in the young person’s journey towards adulthood.
- Aims to improve transition and ensure that every young person has a successful transition to adult healthcare services.
Access the course HERE
More about ‘Transition’
‘Transition’ is the process of moving from paediatric to adult healthcare services for young people with complex conditions and their families and/or carers. This process can be challenging at a time when a young person is growing older and gaining more independence. The age for transition tends to be when the young person is between 15 and 19 years old, however some young people experience it before or after this time. Quite often the process will begin when the young person is not ready. We have concerns about the effect that this will have on the young person as they develop into an adult. In 2014, SBH Scotland published a report highlighting that the lack of planning before moving from paediatric to adult healthcare (transition) placed significant burden on unpaid carers (Levy et al 2014). The study also warned that leaving young people without the continued support they may need put them at risk of not reaching their full potential. Therefore, to tackle this we are keen to encourage bettered education and planning of the process in young people, families and healthcare professionals.
SBH Scotland would like preparation for this process to begin when the young person is around 14 years old and take place for around two years before they are transferred across services. This is based on ARC Scotland’s ‘Principles of Good Transitions 3’ which advocates for transition planning to be supported between the ages of 14 and 25. Taking this support up to the age of 25 means that transition readiness can be taken into account and that continued support can be offered post-transition. Furthermore, it has been found that 90% of parents and carers are unaware of their being any transition plan in place for their child (ARC Scotland figure). A single plan with a single contact assigned to assist with the transition journey would help to address this. Our course takes learners through transition planning and suggests ways in which the process can become more consistent and person-centred.
Take the course!
As an organisation we are ‘there for the journey’ and therefore are working to improve our own transition support. However, we are advocating for more empathy and consistency in the transition process within the healthcare system. We encourage healthcare professionals, or anyone wanting to learn more about the transition process, to take the course and join us in pushing for successful transition.
Access the course HERE
Other Useful resources:
More resources for healthcare professionals
SBH Scotland transition card game
‘Our Voices’ Digital Stories on Transition
Transitions in Healthcare - A Boardgame
Over the past 2 years, thanks to funding from The Burdett Trust for Nursing, SBH Scotland has been working on an important project about transition for young people with spina bifida and/or hydrocephalus. As the year draws to an end we’re delighted to introduce the first part of this work - ‘Young Heroes Team’: The Educational Card Game About Moving to Adult Healthcare.
One of the biggest changes a young person with a complex condition can go through is the move from child to adult healthcare services. This process is known as ‘transition’.
With this process comes lots of new experiences. This can be exciting, yet also daunting for the young person and their family. SBH Scotland has therefore created a fun educational card game to help prepare families for the process.
The game is aimed at young people yet to embark on their transition journey. It can be used as a tool for them and their families to learn more about the hurdles and solutions that come with moving into adulthood and adult healthcare services. The game encourages families to have an open discussion about the process in a safe and engaging space.
About ‘Young Heroes Team’ Game
- 3-6 players can take part in this game either in pairs or individually.
- Players must work together to get all the ‘Young Heroes’ across the finish line of successful transition.
- As a team, the players must tackle hurdles and life events and come up with solutions to help the young heroes through their transition journey.
- The game offers plenty opportunities to discuss the transition process and offers ideas on how to overcome obstacles they may encounter together in the future (in real life).
- We encourage young people to invite their family and friends to join in with this game – we would even encourage healthcare staff to play the game too!
More About ‘Transition’
‘Transition’ is the process of moving from paediatric to adult healthcare services for young people with complex conditions and their families and/or carers.
This process can be challenging at a time when a young person is growing older and gaining more independence. The age for transition tends to be when the young person is between 15 and 19 years old, however some young people experience it before or after this time. Quite often the process will begin when the young person is not ready. We have concerns about the effect that this will have on the young person as they develop into an adult. In 2014, SBH Scotland published a report highlighting that the lack of planning before moving from paediatric to adult healthcare (transition) placed significant burden on unpaid carers (Levy et al 2014). The study also warned that leaving young people without the continued support they may need put them at risk of not reaching their full potential. Therefore, to tackle this we are keen to encourage better education and planning of the process in young people, families and healthcare professionals.
We would like preparation for this process to begin when the young person is around 14 years old and take place for around two years before they are transferred across services. This is based on ARC Scotland’s ‘Principles of Good Transitions 3’ which encourages transition planning be supported between the ages of 14 and 25. However, we would not discourage families from playing the ‘Young Heroes Team’ game and discussing what they have learned even before the young person turns 14. This is so the family has the best chance to facing the process armed and ready. More resources about transition for young people, families and carers can be accessed here.
As an organisation, we acknowledge that more needs to be done in healthcare and education settings to improve this process, however in the meantime we hope that this card game will be a step in the right direction for families. We encourage families to play the game and if they have any concerns about the process to reach out to us or a trusted healthcare professional for support about what their next steps should be.
Unlock your right to health on World Spina Bifida and Hydrocephalus Day '21
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October 25th is World Spina Bifida and Hydrocephalus Day. This day was established and designated by the International Federation of Spina Bifida and Hydrocephalus (IFSBH) General Meeting in Guatemala in 2011 with the aim of raising awareness and understanding about Spina Bifida and Hydrocephalus (SBH). It also serves as a means to advocate and promote the rights of persons with these conditions. The WSBHD was held for the first time on 25 October 2012 at the European Parliament in Strasbourg. Find out more
Unlocking your right to health
This year the IFSBH are focusing on everyone's right to health. Health is an enabler of inclusion. Article 25 of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) states that “persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability”.
The right to health in accordance with article 25 of the UNCRPD is a high priority for IF and the global SBH community. Access to timely diagnosis, information, treatment and multidisciplinary care is still unattainable for many in the global SBH community.
With stigma, discrimination and lack of awareness creating further barriers to the enjoyment of the highest attainable standard of health. Therefore, IF shares with us the theme for World Spina Bifida and Hydrocephalus Day 2021 of “Unlock Your Right to Health”.
The barriers may vary between communities and individuals but the goal of advancing the right to health for all individuals with SBH remains the same. With the WSBHD21 theme “Unlock Your Right to Health”, IFSBH invites SBH associations, individuals with SBH and their families and any other interested stakeholders to explore the barriers to the right to health in their communities and the solutions needed to overcome them.
To better understand, IFSBH have put together the following film.
Events to get involved in:
25th October: Main Event from the 25th October can be watched here
27th October: SBH Scotland's own staff member Kevin O Donnell will be speaking at the 'Aging well with spina bifida and hydrocephalus' event on the 27th October. Register HERE to be sent a link.
Register to this side-event here.
Find out the agenda and more information here.
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