The role of the carer is vital to the welfare of Shine’s members and can range greatly, from expert day to day care for severely disabled members, to ensuring that they are able to leave the house in order to shop or attend important hospital meetings, amongst many other things.

Supporting the carers is a very significant part of Shine’s work. Caring for a loved one can be demanding, exhaustive and lonely. We offer support to approximately 9,000 people who care for those living with spina bifida/hydrocephalus - 28% of those also have to work to supplement the family income while 38% also care for an elderly relative or a second disabled person to whom they have a connection.

Shine supports our carers either via email, by telephone or face-to-face. We have trained staff and nurses who can provide immediate help on how to support the person in their care, information about a medical condition or just simply be there as someone to talk to in order to relieve the stress. We also organise events such as Family Weekends where carers in very similar circumstances can get together and share best practices and anecdotes. Our expertly trained staff are also on hand to offer their advice and possible solutions.

Quote:

‘My child relies on me for company and companionship, sometimes I feel I am just a mum/carer and not my own person.’