Hydrocephalus Focus

Hydrocephalus Focus is an exciting Project being developed by the Scottish Spina Bifida Association.

The main reason for developing the Project is that research, combined with our extensive current knowledge shows there is a significant number of individuals throughout Scotland who don’t have access to appropriate support and information about their condition. As an Association who have expertise in this area it was a natural progression for us to develop this new project which will allow us to help all those who need further support and information on the condition.

Project Aims:

• Research and identify individuals in Scotland who are affected by hydrocephalus as a sole or associated condition
• Identify the need and type of support required
• Provide specialist support and information to self manage their condition more effectively
• Set up a dedicated Hydrocephalus Helpline
• Organise and facilitate user Support groups
• Develop existing links with Healthcare Professionals to raise awareness of the Service
• Provide a dedicated Hydrocephalus Support Worker.

Project Outcomes:

• Awareness about hydrocephalus will be raised throughout Scotland
• Parents and carers of service users will have specialist support and advice to understand the condition and impact on family life
• Individuals and families will receive specialist information, support and advice about their condition
• Service Users will be better supported throughout transition in both health and education and in particular from children’s to adult services.

 

There is currently no other specialist voluntary sector organisation which provides services and supports people with Hydrocephalus as a sole condition in Scotland. It is hoped that this project will allow us to better understand the numbers of people affected by the condition.

If you have hydrocephalus as a sole or associated condition or if you would like to discuss the project further please contact our Family Support Service on 01236 794500 or email familysupport@ssba.org.uk.

If you are already a service user of the Association we will already have your details but if you know of any other people who have hydrocephalus that would like to join the project please tell them to get in touch.

The RS Macdonald Charitable Foundation are assisting the Scottish Spina Bifida Association in funding this project.