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Annual Report 2020 Just the Beginning

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Annual Report 2020 Just the Beginning Spina Bifida Hydrocephalus We believe that having Scotland Spina Bifida or hydrocephalous Is not the end Annual Report 2020 Just the beginning. The Simple Facts Spina Bifida is a fault in the spine in which one or more vertebrae (the bones which form the backbone) fail to form properly, leaving a gap or split. This causes damage to the nervous system, leaving most babies born with some level of paralysis below the level of the fault. Hydrocephalus can be an associated condition of spina bifida or it can occur at any stage in life as a sole condition. This complex condition is a build up of fluid which causes an increased pressure Welcome on the brain. This can lead to social, emotional, cognitive and behavioural difficulties. Spina Bifida Hydrocephalus Scotland (SBH Scotland) provide a Spina bifida or hydrocephalus can affect ANY pregnancy regardless of the mother’s age, ethnicity or social background. lifetime commitment of specialist support and information to all Spina Bifida Hydrocephalus Scotland is the only charity in those affected by these lifelong, complex disabilities including Scotland with a remit offering dedicated support for these family members, carers and healthcare professionals. rare disabilities. Created in 1965 by parents, for parents All of our services are free to members “ SBH Scotland have helped us as and their children, over 50 years later and with little statutory funding we a family for 5 years and I tell we’re now a national charity with remain grateful to grant making bodies, individuals remaining at the heart of individuals and companies whose everyone about them.” everything we do. generosity allows us to give vital support to those who ask for our help. SBH Scotland’s Direct Services Support and Clinical Team work across Scotland to support over 4,000 individuals with a Please read on to see some of range of services including; a helpline, this years highlights. one-to-one support in homes and schools, combined clinics in hospitals, support groups, financial advice, play sessions, outings and workshops. Page 2 Page 3 Chief Executive Looking to the future Report As we conclude this year end, it is clear that we, like all other SBH Scotland continue to develop innovative projects and services charities and businesses in for children, young people and families affected by spina bifida Scotland, will have to radically or hydrocephalus throughout Scotland. rethink our future service delivery model, as we come to terms with Our key priorities are the delivery of age including regular home and hospital international work through seconding the world wide impact of the appropriate services which encourage visits, development and play sessions, a member of our staff to work with most prolific virus affecting our independence and self-management. group activities and outings alongside the International Federation for Spina communities for decades. Our focus remains on early intervention, individualised person centred support. Bifida and Hydrocephalus. Our ongoing family support and the delivery of a All of these activities focused on early commitment to collaborative work has Whilst we are at the beginning of this long specialist suite of clinical services. intervention as well as providing an embedded our support for children journey it is clear from the early indicators, immediate response to crisis, whether in the East of Scotland where our To March 2020, the charity maintained that activity for all of us will be significantly that being a new Mum at her 20 week Hydrocephalus Screening Pathway is income streams in line with projections, affected. scan discovering she is carrying a baby now an integral part of NHS Lothian’s despite the emerging crisis in income with spina bifida, a young adult needing pediatric spina bifida clinic. Our own Despite significant external challenges generation predicted by the COVID-19 support to complete a new benefit form clinical team now offer both face to however, we remain committed to support pandemic. Whilst it is reassuring that or a family eager to meet together as a face and virtual clinics on a range of all children and families affected by spina we were able to achieve our income group, to share activities and enjoy each health issues. bifida and hydrocephalus throughout targets, the future uncertainty will put a other’s company. Scotland. Undoubtedly the means by which significant strain on the organisation and SBH Scotland have developed closer we continue support to our families will be will undoubtedly, at least in the short to Specific external funding has enabled us links with Scottish Government very different but there will be no difference medium term, have a negative impact on to deliver exciting projects and services who have recently launched the in the level of our commitment and our our capacity to deliver the current range within specific localities ensuring as far Neurological Care and Support Action compassion to do all we can to ensure all of services and develop as we would as possible that we are responding to Plan. This 5 year plan is crucial to those affected can be the best they can be. have wished. the needs of our children young people keeping a spotlight on neurological and families. conditions and ensuring that those Throughout the year we delivered a with neurological conditions or range of quality services and projects Our investment in Research and Andrew H D Wynd MBE MIoD symptoms are adequately supported to children young people and families Development has enabled us to support Chief Executive and resourced. Page 4 Page 5 Chairpersons Report As we moved with caution into the 2019/20 financial year we couldn’t “ Just a great big thank you! These weekends are begin to have imagined the new a gift. They have a huge and unprecedented challenges impact and we carry these which would face us by the end of experiences with us for March 2020. long after the event. We But, no strangers to adversity the dedicated The Great are energised and full and SBH Scotland staff team continue to adapt ready to take on whatever in service delivery, clinical services, technology the world throws at us.” and fundraising to ensure the members of our Outdoors organisation remain supported and receive the help they need, under any circumstances. Grateful thanks go to our faithful team of As well as the daily stress and Thanks to the Shared Care Scotland Short independently of their parents. Meanwhile staff nationwide and our committed board Breaks Fund, The Barrack Charitable Trust parents and carers attended talks specific physical toll of a disability on of trustees who steadfastly strive to reach and the Edward Gostling Foundation, one to their needs and wellbeing; hearing agreed targets to provide an extensive range those affected and their family, of this years’ great successes was a Family from motivational speakers, specialist of support including including health check it can also be a very lonely Residential Outdoor Activity Conference at health consultants and a talk from a clinics, financial and benefits support, social Badaguish Outdoor Centre, near Aviemore. SBH Scotland parent and young adult groups and helpline.. and isolating experience both 16 families attended from remote and giving guidance about their journey and The charity landscape has never been so emotionally and geographically. rural areas of Scotland. transition to adulthood. competitive and we need your support more One of the great strengths, often Quizzes, bingo and a Ceilidh provided Everyone left refreshed and invigorated; than ever so we can remain a lifeline for so evening entertainment and gave everyone valuing the experience greatly for the many in Scotland. Thank you to the generous spoken about by SBH Scotland a chance to relax and get to know one respite it gave and the inspiration to individuals and grant making bodies who members is our ability to bring another. During the day the children had maintain and develop their new and continue their support and we look forward people together and build SBH Scotland support staff and specialist existing support networks. to introducing our charity to new supporters nurses taking them on a host of accessible over the next year. networks of support for parents, SBH Scotland would like to thank all of activities such as archery, cycling and the volunteers, helpers and contributors carers and siblings as well as firebuilding. For many of the children and who helped to make this special launching life-long friendships. young people, this is the first time they Margo L Whiteford CBE weekend possible. had experienced taking part in activity Chairperson Page 6 Page 7 AdventureAdventure at Auchengillan Children in Need also generously fund some activities for our West of Scotland Squad and Superhero Groups. In August we took a group of young people A full range of accessible activity was for a residential overnight outdoor activity offered during the day which encouraged On Film - Children in Need weekend at the Auchengillan Scouts Centre. friend and team building as well as Empowering those with disabilities to practical outdoor skills. The evening was be as independent as possible is one of less rustic with pizzas and a movie in the SBH Scotland work as closely Since 2017 Children in Need have been the main aims of SBH Scotland and this canteen! When asked how they felt about funding part of our work in Aberdeen, with our funders as they weekend allowed us to further foster their weekend away, the young people Aberdeenshire and the North East which independence in the young people. For acknowledged that some things were require to promote our allows us to provide one-to-one sessions some this was the first time they had ever very new and outside their comfort zones partnerships.
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