Provide direct support services to everyone in Scotland affected by spina bifida and/or hydrocephalus which seriously affect over 3,000 children, young people and adults in Scotland each year. Both conditions cause life long complex disabilities.
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Registered Charity in Scotland (SC013328)
Spina bifida is a defect which is present at birth and most of the people born with it are paralysed from the waist down and will have to use a wheelchair for the rest of their lifes. They are also likely to have enduring kidney and bladder problems. In addition, approximately 80% of those born with spina bifida also have the condition hydrocephalus, which is an accumulation of cerebrospinal fluid in the brain. This causes numerous neurological disorders, including problems with speech, sound, impaired concentration and organisation skills. Both conditions cause complex disabilities and lifelong health problems. Despite intensive research, the cause of the defect which causes spina bifida is still unknown. Unfortunately, there is no cure for either of the conditions. Both spina bifida and hydrocephalus can be overwhelming and extremely distressing for families. The Scottish Spina Bifida Association discusses the effects and impacts with those affected and the most common emotions that people have are, loneliness and isolation, anger, resentment, sorrow and sadness, withdrawal and depression and they are likely to develop problems with appetite, sleeping and exercise. The Scottish Spina Bifida Association (SSBA) is the only Scottish charity dedicated to providing advice, advocacy and direct support to people born with spina bifida and/or hydrocephalus and their families. There is a low call advice-line that ensures that there is a specialist Family Support Worker available to provide emotional and practical support, advice and advocacy to everyone who calls. We then provide direct support services to everyone, attedning hospital clinics, providing advice and support at transitional periods, providing public policy informaiton, advice on equipment, aids and adaptions to houses. We also provdie a direct support service through our healthcheck clinics and our inclusive fitness project. It costs over ¬£850k every year to provide these direct support services to everyone who is affected. In addtion, we will provide support to families with new babies, with a policy to visit every new baby born with the condition(s) within 48 hours of being born. Our services are well used and the direct support services ensure that families who are affected by the conditions have a voice. We have been providing this project for over 45 years.
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