Our approach and service model
Specialist Expertise Informed by Lived Experience
When people join Shine, they benefit from the accumulated knowledge of over 60 years of support for spina bifida and hydrocephalus.
We are guided by lived experience at every level of our organisation. Many of our team of staff and Trustees have spina bifida and/or hydrocephalus themselves, or care for someone living with these conditions. We combine our strategic knowledge and skills with first-hand experience of the conditions we represent.
Shine’s professional and personal expertise allows us to deliver high-quality, person-centred support for people living with spina bifida and hydrocephalus. Through Shine, our beneficiaries have access to practitioners who understand the realities of living with these complex, lifelong conditions, alongside the professional knowledge needed to deliver effective support.
Shine’s Health Team consists of qualified nurses and allied health professionals, including Occupational Therapists and Physiotherapists, with specialist expertise in spina bifida, hydrocephalus and related fields such as neurology, continence care and long-term condition management. This enables our members to access evidence-based information, practical support and specialist guidance tailored to their individual needs.
The health information we provide is developed by our in-house Health Research and Information Co-ordinator, who holds a PhD in Molecular Biology, and is independently reviewed by our Health Advisory Panel. This panel includes clinical experts from disciplines like neurology, urology, surgery, tissue viability and orthotics, alongside researchers with specialist interests in spina bifida and hydrocephalus. This robust quality assurance process helps ensure that our information is clinically accurate, evidence-based, accessible and relevant to the people we support.
Shine's multidisciplinary expertise extends beyond health. We also have specialist staff with expertise in Special Educational Needs (SEND), Early Years Development, Youth Work and Dementia care. This breadth of knowledge enables us to support individuals and families facing complex challenges throughout their lives.
For funders seeking a trusted charity partner, this combination of clinical expertise, lived experience and specialist knowledge enables Shine to deliver informed, high-quality support across the full lifespan of people affected by spina bifida and hydrocephalus.
Our Work in Action
Vicky’s Story, 2026
Vicky is in her 40s and lives with hydrocephalus. Shine’s Health Team and information service have helped her learn more about her health and condition, and advocate for herself in clinical settings.
I first heard about Shine when I went for an MRI. The radiographer asked me lots of questions about my shunt that I had never been asked before, such as its model and whether it was programmable. Shine was able to help me find out this information and sent me a Shunt Alert Card which I carry with me everywhere.
Shine has highlighted to me the importance of knowing more about my shunt system so that I can have more informed conversations with healthcare professionals who are not always familiar with hydrocephalus or VP shunt systems. Through Shine I feel as though I have a community which I can turn to if I ever need help or have questions.
Where We Make a Difference
Shine supports people with spina bifida and hydrocephalus across England, Wales and Northern Ireland.
Shine began as a small number of independent associations founded by parents of children with SBH. Realising that pooling resources would strengthen sustainability, allow more people sharing similar experiences to connect, and create a model that would best serve those with the conditions, the associations joined forces. Today, we are a national charity meaning that we:
- Have the economies of scale to invest in centralised expertise, particularly in relation to the health services we provide for our members.
- Can connect members living in isolated areas with others who are in similar circumstances to them, regardless of geography
- Represent the voices of people with spina bifida and hydrocephalus at a national level, which has led to major changes, such as the mandatory fortification of flour with folic acid, and the commissioning of fetal surgery for babies with spina bifida
- Avoid unnecessary duplication of services
We balance our national services with strong regional knowledge and specialist expertise across different ages and life stages for our beneficiaries, to provide a specialist service for people that would be unsustainable at a local level. We often engage with local councils, organisations and services to advocate for our members or signpost them to local resources and support.
Our funding reflects our structure, in that we hold both larger national grants and smaller, restricted pots of funding to help us to establish long-term, permanent on a local level and for specific projects.