Shine’s Specialist Services

We provide specialist support pre-birth and beyond for anyone living with spina bifida, hydrocephalus and associated conditions, as well as to parents, families, carers and professional health and social care staff.

We work on a national level to provide these services through the following specialist service teams:

Through our regional structure, these teams are accessible in your area and once contacted we will do everything possible to ensure that you receive all the information and support you need.

Support and Development Workers

Shine employs a team of Support and Development Workers in England, Wales and Northern Ireland.

Support and Development workers are on hand to help you make informed choices.  They can contact you by telephone, e-mail, text message or even Facebook messenger.

Our Support and Development Workers can help, if you:
  • have spina bifida or hydrocephalus
  • have a child with spina bifida or hydrocephalus
  • live with or care for someone with these conditions
  • are a professional providing support
  • are expecting a baby with spina bifida
The support you really need

Shine’s professional Support and Development Workers are here to offer their support, confidential information and advice on:

  • Folic acid and pregnancy
  • Medical conditions and treatment
  • Staying healthy
  • Bowel and bladder issues
  • Benefits, finances and funding
  • Education
  • Living independently
  • All aspects of relationships and social life
  • A listening ear

…and much, much more.

Health Development Team

Keeping healthy means individuals and families can spend more time enjoying life. Shine’s Health Development Team have more than 40 years’ experience between them - advising on the best options for keeping healthy.

They also understand the worries, concerns, frustrations and possible problems you might face and what you are dealing with.

Advising at NHS clinics, arranging training events for Shine members, writing new health information, giving one-to-one advice to individuals, parents, pregnant women, relatives, carers and fellow professionals, or giving 1-1 consultations at Shine’s Health Hub – are all part of a day’s work for the Health Development Team.

The health team can help with:
  • Planning a pregnancy – for folic acid advice and how this reduces the risk 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 as a baby, child or adult.
The health team can advise on medical matters such as:
  • Shunts and ETVs (endoscopic third ventriculostomy)
  • Bowel and bladder issues
  • Skin care
  • Tests and treatments for spina bifida or hydrocephalus
  • Helping with issues around depression or anxiety
  • Effects of ageing
  • Orthopaedics
  • Sexual health relating to spina bifida or hydrocephalus

If you, or someone you care for, have any of the conditions Shine covers, contact our Health Development Team with your questions on health matters.

Education Advisers

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. We are here to help.

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.

You can also find support on line by visiting our education section


Disability Benefits Advisory Service

Shine’s new Disability Benefits Advisory Service aims to help more members access key disability benefits.

The new service is open to all members and will offer specialist advice and one-to-one support.

Whether you are a new parent looking after children with multiple needs at home and at school, a young adult at college, work or setting up a home, or someone coping with later in life issues, the new Disability Benefits Advisory Service is here to support you.

We will:
  • Work with members on a one to one basis to resolve specific benefit related issues
  • Support members to claim appropriate entitlement to benefits
  • Assist members who've been refused applications for benefits
  • Provide information and tools to help members better understand their rights and entitlement
  • Keep up to date with the latest developments in welfare policy and practice
  • Represent the needs and views of our members at regional and national level


If you would like to talk to a Shine professional about spina bifida or hydrocephalus, NPH, IIH, anencephaly or any of the above – phone our team on 01733 555988, email or contact Shine via this form.





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