Presentation on theme: "SHINE and our services. About SHINE…… Who are we? A community of 75,000 individuals, families, friends and professionals sharing achievements, challenges,"— Presentation transcript:
About SHINE…… Who are we? A community of 75,000 individuals, families, friends and professionals sharing achievements, challenges, and information on living with hydrocephalus and/or spina bifida Working in England, Wales and Northern Ireland since 1966 (formerly ASBAH) Around 10,000 disabled members, half with hydrocephalus alone, half with spina bifida with/without hydrocephalus
What do we do? Health team- Health team- Specialist advice on spina bifida and hydrocephalus Antenatal diagnosis ( pro-choice) giving information on what parents-to-be can expect Bladder and bowel advice Plans for ‘Health Hub’ Telephone support Study days Campaigning for Specially Commissioned Services
Support and Development Workers Mostly professionally qualified Advice on benefits, education, equipment and housing Support Local activities Bringing people together
Support for Parents-to-be Chance to talk through scan findings with experienced staff Support to make decision Information on surgery Equipment Bladder and bowel options
Bringing people together Local groups Social media Events Family weekends Picnics Information/study days
Family Weekends Information on- Cognition Bladder and bowel Behaviour Education Benefits – PLUS fun! Mutual support and fun!
SHINE 40+ People with spina bifida are reaching middle age in significant numbers for the first time. Opportunity to connect with others, use life experience to support others Develop information on aging with the conditions
Cases 1) Mother of a 2 year old called, child had headache, nausea, vomiting for 5 days Had seen neurosurgeon, who thought shunt was fine. Due to travel for Christmas. Discussed, suggested asking GP for suppositories Two hours later, child was up, playing, and eating normally
Cases Mother-to-be called, baby had a diagnosis of SB Talked through scan findings Supported through pregnancy Represented family to get them rehoused Liaised with neurosurgery unit when child had shunt malfunction Liaised with physiotherapy services when child slipped between Regional & Local Sevices Information/training when started school
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