Shine UK

Shine - yellow ball with Shine in grey Logo

Tell us about your organisation/department/project (your aims, what you do, who you work with): 

Shine is a national charity. We provide specialist support from before birth and throughout the life of anyone living with spina bifida and/or hydrocephalus, as well as to parents, families, carers and professional care staff.  Our work also includes supporting anyone living with idiopathic intracranial hypertension (IIH) and normal pressure hydrocephalus (NPH)   

We have an Early Intervention team, an Education Officer and Youth Worker.  Our Health and NPH and Dementia Teams are made of health professionals who provide support and advice to our members and a training portal for other health professionals.   Our Support and Development Workers are regionally based and support all our members, their families and carers with information, guidance and advice.  Our Support and Development Workers can advise on how to access the correct benefits and services to improve financial stability and health and well-being to supporting with Education and Health Plans for members.  We work with members and professionals in their area providing advice, liaising with health, housing and school professionals on behalf of members, attending hospital clinics, and running online and face to face events, Whatsapp and closed Facebook groups for members to meet each other. 

Tell us why being a Haref Ally is important for you and your organisation

Shine stands for Spina Bifida, Hydrocephalus, Information, Networking, Equality.  Haref’s approach of ‘connecting marginalised communities and organisations to reduce inequalities’ supports Shine’s objectives of raising awareness of Shine within marginalised communities.  Having the Haref network makes engagement and networking with local groups easier.

Tell us about anything that you or your organisation has done to improve how you work with ethnically marginalised communities 

We look at what venues are accessible and inclusive and consider cultural holidays when planning events.  A Working Group has been set up for Shine staff to share  information and best practice from staff experiences from the different regions. We use Language Line and share key messages about folic acid and fasting at the beginning of Ramadan. 

Contact details for organisation: