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
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.
- 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:
SBH Scotland transition card game
‘Our Voices’ Digital Stories on Transition
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.
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.
An inspiring eight-year old charity fundraiser from East Kilbride has scooped the Charity Champion Award at this year’s ScottishPower Foundation Awards, leading a Scottish trio of success at the annual charity celebration.
Laila McRae was crowned this year’s ScottishPower Foundation Charity Champion for her incredible fundraising efforts for us at Spina Bifida Hydrocephalus Scotland (SBH Scotland), which supports her baby sister, Amber, who was born with spina bifida and hydrocephalus and has been through many surgeries in the first year of her life.
Laila herself was diagnosed with juvenile arthritis – which only affects one in 1,000 children – when she was three, but she has battled through the pain to make a real difference for Amber and others supported by SBH Scotland – raising more than £2,000 in the last year alone. Laila’s fundraising efforts included drawing rainbows of hope and displaying them around her local community with a JustGiving link to SBH Scotland; taking part in the 2.6 challenge during lockdown; and completing the Kiltwalk in April this year – an incredible achievement given her arthritis.
Laila’s success gives an incredible funding boost of £5,000 to SBH Scotland, which her Mum, Leanne, says has made a huge difference for her family.
Deborah Roe, Director of Fundraising at Spina Bifida Hydrocephalus Scotland said: “The past twelve months have been hugely challenging for the voluntary sector and for the families we support. Almost overnight, we had to write off about 50 per cent of our fundraising income. However, thanks to the selfless support of individuals like Laila, we are able to continue supporting families across Scotland affected by spina bifida/hydrocephalus. Laila is a wee star and we can't think of anyone more deserving of the Charity Champion award.”
Laila’s mum Leanne said: “SBH Scotland has supported our family and Amber all the way through her journey. It’s been hard for us, but there was no stopping Laila when she decided she wanted to help! We’re so proud of what she has achieved for Amber and everyone supported by the charity – it was no mean feat, but she did it. She is real inspiration to everyone around her and we’re so chuffed the ScottishPower Foundation has recognised that.”
Also taking a winner’s spot and £5,000 at the 2021 Foundation Awards was Dundee Heritage Trust, which picked up the Community Engagement Award and Paisley-based Street League completes the Scots Awards line-up, receiving £2,500 as runner-up in the Innovation Award category.
The ScottishPower Foundation Awards showcase projects that make a positive impact on people and communities across the country. The successful projects – which support individuals, families and young people from across the UK – range from developing skills for employment, arts programmes and support for mental health to helping homeless people.
They are open to recipients of this year’s ScottishPower Foundation funding, which saw almost £1.2 million awarded to a wide range of outstanding charities. The projects are judged in four categories: Innovation Award, Education Award, Community Engagement Award, and Charity Champion Award – which gives special recognition to the outstanding contribution made by an exceptional employee or volunteer who exemplifies what their organisation stands for.
Melanie Hill, Executive Officer and Trustee of the ScottishPower Foundation, said: “Huge congratulations to this year’s Foundation Award winners and runners-up, who all help improve lives and change lives. It’s so rewarding to be able to honour the amazing work of our Foundation-funded charities through our Awards celebration and, as always, it was an almost impossible task to choose between the finalists.
“However, Laila and her efforts for SBH Scotland and the work of Dundee Heritage Trust and Street League – alongside our other worthy winners from across the UK – all stood out from the crowd in how they went above and beyond to make a difference for others. They epitomise what the ScottishPower Foundation stands for and they are incredible charity ambassadors – not just for their own organisations, but for the whole of Scotland.
“I can’t wait to see how they put their prize money to use and continue their incredible charitable work across the country.”
The full list of winners and runners-up is available on the ScottishPower Foundation website: www.scottishpowerfoundation.com.
If you've been inspired by Laila to Fundraise for SBH Scotland why not contact our Fundraising Team or take a look at our Treks and Challenges pages? Fundraising has never meant more than it does right now - you can make a big difference today.