SHINE and our services

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-• 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

Campaigning- Go Folic!

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 togetherLocal groupsSocial mediaEventsFamily weekendsPicnicsInformation/study days

Family Weekends• Information on-• Cognition• Bladder and bowel• Behaviour• Education• Benefits

–PLUSMutual 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

Social groups

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

Thank you