Understanding Spina Bifida and Hydrocephalus

MICROSOFT TEAMS LIVE SEMINAR
Friday 15th November 2024, 2:00pm—3:30pm
This online event will be run by SHINE Cymru offering an introduction to spina bifida and hydrocephalus with a case study approach to address the theme of the 'right help at the right time' This event is promoted as a result of the learning identified in published Child Practice Review—CYSUR 3/2021.

Learning outcomes:

  • understand what spina bifida and hydrocephalus are, and the different ways in which the conditions can impact a child’s life and health, and that of the family
  • know the numbers of people affected by spina bifida and hydrocephalus in Wales and across counties
  • better understand who should be involved to ensure 'the right help at the right time'
  • know what resources, information and support are available, and how to access them
  • Support improved links and promote referral systems with Shine Cymru

Featuring guest facilitators:

Kate Steele, CEO, Shine: Kate is Chief Executive for Shine, the only charity that works across England, Wales and Northern Ireland to support those whose lives have been affected by spina bifida and hydrocephalus.


Kate has extensive experience and skills in campaigning and awareness-raising, and a proven track record in project management and successful delivery of national and regional projects. She has been instrumental in the national campaign for mandatory fortification of flour with folic acid. Passionate about improving lives of people with spina bifida and hydrocephalus, Kate has been calling for improved access to the right services at the right time for improved health and wellbeing.


Sian Prince, Wales Manager, Shine Cymru: Having worked in the voluntary sector for almost 30 years, and with Shine Cymru since 2010, Sian brings huge experience and insight into the challenges faced by individuals and families in Wales, particularly those whose lives have been affected by spina bifida and hydrocephalus. Sian leads a small team of Support and Development Workers, who work directly with Shine Cymru members, providing much needed advice and support to help navigate the myriad of services they need to lead happy and healthier lives. A key role for Sian is to develop links with statutory services across Wales, driving the importance of joint and holistic approaches to supporting babies, children, young
people and adults with the conditions. Sian is also Shine Cymru’s educational lead.

Target Audience: 

Social Workers, Managers, Child Disability Services, Adult Disability Services, Transition Services, Health Professionals, Community Nurses, Physiotherapists, Dieticians, GP’s, Paediatricians , Community Doctors & Health Visitors

Meets Learning Outcomes for staff groups B, C and D of the National Safeguarding Training Standards and Framework 

Supporting Resources

Session Presentation
The impact of ageing on the lives of people with spina bifida
Shine Annual Report

How Shine can support you

Shine Cymru is available to support professionals across statutory services in Wales if working with families / adults who have spina bifida and/or hydrocephalus, or Normal Pressure Hydrocephalus. They can provide you with insights into the conditions, and advice on preventative approaches to managing health and well-being, as well as specialist knowledege on aspects of social care, housing, benefits etc.

Contact Shine:

01733 555988 or email firstcontact@shinecharity.org.uk
Contact details for Sian Prince, Shine Cymru Manager are 07789 616416 email sian.prince@shinecharity.org.uk

Free professional membership.

Shine offers free professional membership.  For more details, go to https://www.shinecharity.org.uk/support-for-professionals/professional-membership

Links to additional Information