Spina Bifida Hydrocephalus Scotland

Spina Bifida Hydrocephalus Scotland

Charity information

Spina Bifida Hydrocephalus Scotland

An organisation created by parents; for parents and their children. Spina Bifida Hydrocephalus Scotland was founded in 1965 (then known as Scottish Spina Bifida Association) by a small group of enthusiastic parents who each had a child with spina bifida.
We employ specialist staff who work across Scotland to provide a lifetime commitment of information, support and projects to all those affected by spina bifida, hydrocephalus and allied conditions.

Founded 1965

  • Mission statement

    Spina bifida is a developmental disorder and is usually detected during pregnancy following the 20 week scan. The most common physical symptoms are paralysis from the waist down and double incontinence. Additionally, about 80% of people with spina bifida are also affected by hydrocephalus, leading to learning difficulties and problems with sight, hearing and speech. Children and young people born with the disability(s) will require lifelong support and have multiple complex support needs.

    SBH Scotland has 3,714 registered service users, which includes children & adults with spina bifida and/or hydrocephalus, their carers and families. Staff work across all SBH services to provide a holistic personalized approach to enable service users to access appropriate support to meet their individual needs. Every call to our team is unique but the common areas include: pregnancy support; independent living; specialist equipment; leisure and emotional development; housing and adaptions advice; holidays & respite; education and bereavement support.

    Other support services include the provision of one to one key workers, a helpline, advocacy, workshops, education support, transition services, youth clubs and access to our Healthy Living Project, which encourages medical self-management and supports continence issues.

    Families are also able to take advantage of subsidised breaks at Rebecca Cottage, the SBH Scotlands fully adapted self-catering cottage in Carnoustie, Angus.

  • Aims

    Spina Bifida Hydrocephalus Scotland aims to:

    • Support everyone in Scotland affected by spina bifida/hydrocephalus.
    • Identify service users' needs.
    • Empower service users to make informed choices whilst living the highest quality of life possible.
  • Overview

    Established: April 1965

    Board members: 12

    Full time staff: 16

    Part time staff: 7

    Volunteers: 75

    Phone number: 01236 794500

    Address: The Dan Young Building6 Craighalbert WayCumbernauld G68 0LS

    View charity accounts on the Scottish Charity Commission website
  • SEA Change

    We provide direct, hand-on support through providing trained sessional workers who will wo... More
  • Rebecca Cottage Refurbishment

    Caring for children, young people and adults with Spina Bifida and/or Hydrocephalus (SBH) ... More
  • Direct Support Services

    Provide direct support services to everyone in Scotland affected by spina bifida and/or hy... More