Support for parents and families
How can we help?
Our main aim is to provide advice, advocacy & support to children, adults and families and all others affected by spina bifida and/or hydrocephalus. When a child is first diagnosed it is a very emotional and stressful time for parents and other family members. Parents may feel socially isolated, frustrated and under a great deal of emotional and financial pressure.
Families need advice and support to help them come to terms with the initial situation that faces them and to learn how to manage in the years ahead. Such support will also be required throughout the child's life, usually into adulthood, to ensure that all the specialised needs of the individual are met.
Having access to the right advice and support helps ease the stress of those already experiencing a traumatic period.
Call us about spina bifida or hydrocephalus on 03455 211 300 or email us. We can help.
Currently more than 3500 registered members of Spina Bifida Hydrocephalus Scotland benefit from access to a helpline that puts them in direct contact with a Support Worker. This is a professional service staffed by our Direct Services Team. If there is a time when you call cannot be answered please leave a message on the answering machine and all messages will be responded to by the next working day.
Every individual or family situation is unique and therefore requires unique support, but our primary services include:
We can provide information and advice on health related issues such as continence and mobility and liaise with all relevant health professionals.
Advice and information is available on such topics as nursery and pre-school provision, placement requests, education law, your rights, and disability discrimination. We can also provide training to teachers about physical, educational and behavioural aspects.
We can help if you have to apply for house adaptions or indeed need to move to more suitable housing.
We can apply for grants on your behalf for assistance with expenses such as holidays, clothing, bedding and specialist equipment.
We provide information and advice on mobility issues and the sourcing and purchasing of specially adapted equipment including cars, wheelchairs and even toys.
There are some specific benefits you will be entitled to and we can assist with completing the applications.
If you would like someone to accompany you to a hospital visit, or to a school review, we would be happy to do so. At other times you may just like to know what your rights are. We are also happy to provide information to schools, colleges, universities, or employers.
We provide advice and counselling on planning for the future, building personal relationships or responding to social barriers that may be encountered.
Leisure and recreation
Advice on accessible holidays and sports activities.
Monthly groups are held in Aberdeen, Edinburgh, Fife and Cumbernauld. If there is not a group in your area please get in touch and we can try and find a group for you in your area or with enough interest we could launch other groups.
For more information please contact the Direct Services Team on 03455 211 300 or email for further details.