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Membership Terms and Conditions

Data Protection

By filling in this form you agree to allow Shine to keep your information on record.

Shine will make sure that your information is kept private and protected according to the Data Protection Act 1988. All the information we get from you will only be used for research or collecting statistics, and to keep you up to date on Shine news and the benefits of being a Member. We will never pass on your details to another person or organisation without you agreeing to this.

Shine is committed to effective statistical recording using the bespoke database. We need this information to monitor the take up of services and identify the need for new services. The statistics show that we are providing a much needed service and also assist us with new funding applications. Any statistical information given to third parties shall be produced in anonymous form so that individuals cannot be identified.

We recognise that all Members should be able to access our services in confidence and we are committed to this principle. All staff and volunteers must ensure that no discussions relating to a Member takes place outside of the work environment.

Tell us at any time if you don’t want Shine to make contact with you anymore, and we will make sure we take you off our list within 28 days of you telling us.

Breaches of Confidentiality

There may be occasions when it is necessary to breach confidentiality. For example, if a Member shares information about a child abuse; where there is conflict of interest; or where there are legal implications (see Legal Framework below.)

Shine recognises that any breach of confidentiality must be treated very seriously.

Any person whose data is held, has a right to access their file provided they give reasonable notice to the Organisation. There may be an administration charge for this service or a charge for providing copies.

Legal Framework

We will monitor this policy to ensure that it meets legal requirements including the Data Protection Act, the Childrens Act, the Rehabilitation of Offenders Act, and the Prevention of Terrorism Act.

Membership Rights

Shine has three specific types of Membership that have voting rights in the organisation’s annual elections.

  1. Disabled members – those 16 years and over with spina bifida and/or hydrocephalus. For disabled Members under 16 years, one parent has voting rights.
  2. Family members – this is a close member of the family including siblings and extended family members who support the Member.
  3. Associate members – professionals working in allied professions, i.e. medical, education etc. This section also includes interested people who have supported Shine’s Members, including ex-staff and ex-committee members who sign up to become Members.

When a child becomes 16, the vote will automatically go to them. If the parent wishes to retain the vote, they can become Members in their own right by signing up as a family member. A second parent can become a Member at any time by completing the family Membership form.

Shine Members located overseas do not have voting rights.

All voting Members can be nominated for a position on the Board of Directors of Shine.

Membership Services

While Shine will endeavour to deal with your enquiry as effectively as possible, we are not an emergency service, and if your enquiry is of an urgent nature, you should contact the relevant statutory services.


Fun for All the Family at Two Day Abseil Event

Pictured: Shine fundraiser Georgia Kelly, Heart FM's Kev Lawrence and Peterborough Cathedral events manager…

Did You Know?

Some babies with spina bifida are now operated on before they are born, via keyhole surgery.

Hydrocephalus can be congenital or acquired.

NPH (Normal Pressure Hydrocephalus) is an excessive build-up of fluid in the head.

Hydrocephalus is a build up of excess fluid in the brain.

Some 11 - 35% of people with Intracranial Hypertension recover spontaneously.

Most babies with spina bifida undergo surgery within 48 hours of birth.

“Every effort should be made to ensure that all children are immunized, no opportunity to immunize should be missed.”

If you have spina bifida +/or hydrocephalus you should receive the same vaccinations as any others, when going abroad.

Hydrocephalus comes from the Greek "hydro" meaning water and "cephalie", meaning brain.

Some forms of hydrocephalus require no specific treatment.

Medical advice should always be sought if shunt infection is suspected.

Shunt: a device that diverts accumulated cerebro-spinal fluid around the obstructed pathways back to the bloodstream.

Possible signs of chronic shunt blockage include: fatigue, general malaise or behavioural changes.

A shunt alert card should be carried at all times by people with hydrocephalus treated by a shunt.

Possible signs of acute shunt blockage may include: visual disturbances, drowsiness and seizures.

Symptoms of Normal Pressure Hydrocephalus are similar to Alzheimer's, Parkinson's disease or simply increasing age.

NPH (Normal Pressure Hydrocephalus) occurs most often in people aged over 60.

Benign Intracranial Hypertension aka Idiopathic Intracranial Hypertension affects about one or two in every 100,000 people!

Symptoms associated with raised intracranial pressure; headache, visual disturbances, photophobia, vomiting, problems with balance...

Diagnosis of Intracranial Hypertension is by scan + measurement of the CSF pressure.

Babies born prematurely are at increased risk of developing hydrocephalus.

Shine can raise money by recycling your used inkjet cartridges, toners or CDs and DVDs.

Para-athletes with spina bifida and hydrocephalus compete in sports ranging from cycling to dressage.

Hydrocephalus may affect memory, concentration and behaviour.

The usual treatment for hydrocephalus is to insert a shunt into the brain.

CSF stands for cerebro-spinal fluid.

Benny Bear is a teddy with hydrocephalus who helps children understand the condition.

Shine is always looking for Marathon Runners to help with fundraising.

Spina bifida occulta is a hidden form of spina bifida.


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