Our Team

Shine's team is a diverse group of people who have a wide range of specialisms and knowledge, and are dedicated to supporting our Shine community.

 

Health Team

Shine’s Health Team are specialists who have decades of experience advising on the best options for keeping healthy. They also understand the worries, concerns, frustrations and possible problems you might face.

Advising at NHS clinics, arranging training events for Shine member, providing health information, giving one-to-one advice to individuals, parents, pregnant women, relatives, carers and fellow professionals - are all part of a day’s work for the Health Team.

Shine’s Health Team can advise on matters such as:

  • Shunts and ETCs (endoscopic third ventriculostomy)
  • Bowel and bladder issues
  • Skin care
  • Tests and treatments
  • Depression or anxiety
  • Effects of ageing
  • Orthopaedics
  • Sexual health relating to the conditions.

Shine’s Health Team can also help:

  • With planning a pregnancy - for folic acid advice and how this reduces the chance of spina bifida
  • During pregnancy, if you are told your baby has spina bifida, hydrocephalus, or anencephaly
  • At any time when you or a member of your family gets a diagnosis - whether it is during pregnancy, as a baby, child, or as an adult.

 

Support and Development Team

Shine employs a team of Support & Development Workers in England, Wales, and Northern Ireland. They are on hand to help you make informed choices, and offer their support, confidential information and advice on:

  • Health conditions and treatment
  • Staying healthy
  • Bowel and bladder issues
  • Living independently
  • A listening ear

...and much, much more.

Through our Support & Development Workers you will have access to Shine’s additional services on Education, Health, and Benefits.

 

Early Years and Family Support

Our Early Years and Family Team support children from 0-12, young people from 13-24, and their parents/carers, to ensure that all children are given the best start in life. Our teams coordinate to combine the expertise of our Support & Development Workers, specialist Health, Education and Welfare teams, with dedicated early intervention staff to deliver more focused, concentrated support which includes:

  • Practical age-related information to support children’s development
  • Information on keeping children healthy despite multiple health challenges
  • Support to ensure children’s educational needs are understood and provided for
  • Emotional support for parent/carers through difficult times
  • Opportunities to build social connections with other families

 

Education Support

Shine’s Education Advisers know all about the challenges of getting a good education - from getting your child into the right school, ensuring good support at school to managing changes such as moving from primary to secondary and going to college or university.

Working with parents, children, and teachers, the education advisers ensure that the best support is available for children with spina bifida and hydrocephalus. For example, ensuring good access and support for children whose mobility is affected by spina bifida, or that the effects hydrocephalus can have on memory, concentration, organisation and behaviour are recognised so that children can achieve their potential.

 

Benefits

Shine’s Benefits Advisory Service aims to help more members access key disability benefits. The services is open to all members and offers specialist advice and one-to-one support. Whether you are a parent looking after children with complex needs, a young adult at college, work, or setting up home, or some coping with later in life challenges, the Benefits Advisory Service is here to support you.

We will:

  • Offer one-to-one support to resolve specific benefit-related issues where required.
  • Support applications to claim appropriate entitlement to benefits.
  • Offer advice on appealing unsuccessful benefit applications.
  • Keep up-to-date with the latest developments in welfare policy and practice.

 

All our services are made possible because of support from individuals, businesses and charitable trusts. You can read more about how we are funded here.