Children, Young People, and Families Team
Every family's journey is different, and whatever stage you're at, we're here for you.
Whether you're expecting a baby, caring for a child, supporting a teenager, or helping a young adult take their next steps towards independence, our Children, Young People and Families Team is here to provide information, guidance and support.
If you are living with spina bifida, hydrocephalus or a related condition, or you are a parent, carer, sibling or family member, you can access support from birth through to age 25, and our Adults' team will be around to support you from then on.
Our aim is simple: to make sure you never have to face any challenges alone.
We can help you access practical information, emotional support, and opportunities to connect with others who understand your experiences. Whether you need advice about healthcare, education, benefits, social care, transitions to adulthood or independent living, we're here to listen, guide and support you every step of the way.
Our team works across England, Wales and Northern Ireland, helping you get the right support, at the right time, in the way that works best for you.
Your First Contact with Shine
For many families, the First Contact Team is the start of your journey with Shine. If you've recently received a diagnosis, are looking for support, or simply want to find out what's available, we're here to help.
When you contact us by phone, email, through our website or via social media, our team will listen to your needs and help you find the information, resources and support that are right for you.
First Contact works closely with colleagues across Shine to make sure you're connected to the most appropriate service. They can help answer questions, provide resources, update your membership details and make sure you can access the support you need throughout your journey.
From your very first conversation with us, we want you to feel welcome, informed and supported.
National Manager: Children, Young People and Families (0-25)
Our Children, Young People and Families Team is led by our National Manager, who oversees and develops services across the UK.
They work closely with healthcare professionals, education providers, partner organisations and colleagues across Shine to make sure our services continue to reflect what you and your family need, both now and in the future.
Support and Development Workers (SDWs)
Your local Support and Development Worker is often the person you'll get to know best.
Based across different regions, Shine's SDWs provide one-to-one support, information and guidance for children, young people, parents and carers.
They can help you understand your rights, access services and benefits, navigate health and education systems, and overcome challenges that may affect your wellbeing, independence or daily life.
They also organise local and online events, connect you with peer support opportunities, and build relationships with communities and professionals to help make sure you feel informed, connected and supported.
Many of our Support and Development Workers attend NHS specialist clinics, meaning you can access support from them at the earliest stages of your journey.
Early Intervention Project Workers
The early years after a diagnosis can feel overwhelming, and our Early Intervention Project Workers are here to support you during this important time.
They can help you build confidence, access reliable information, understand your child's development and connect with other families who have similar experiences.
By providing support early, they help you feel informed, prepared and empowered as you care for your child.
Youth Voice and Engagement Officer
Your experiences matter, and our Youth Voice and Engagement Officer helps make sure young people's voices are heard.
They work directly with young people to create opportunities for you to share your views, influence decisions, build confidence and develop new skills. Through youth-led projects, activities and events, you can connect with others and play an active role in shaping the Shine community.
Education Officer
Education can sometimes feel complicated, but our Education Officer is here to help you understand your options, rights and available support.
They provide specialist advice to children, young people, families and professionals on education-related issues, from early years right through to further and higher education.
They can help you navigate processes such as Education, Health and Care Plans (EHCPs) in England, Individual Development Plans (IDPs) in Wales and Statements of Special Educational Needs (SEN) in Northern Ireland. They can also advise you about accessibility, inclusion, reasonable adjustments and additional learning support.
The Education Officer works alongside schools, colleges and professionals to improve understanding of spina bifida and hydrocephalus, helping ensure you receive the support you need to achieve your goals and fulfil your potential.
Here for you and your Family
Whatever your experience, age or stage of life, our Children, Young People and Families Team is here to help you feel informed, connected and confident.
Whether you're looking for advice, support, friendship or practical guidance, we're here to help you and your family thrive.