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Shine Health

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Introducing Shine Health


In February 2015 Shine’s decision to raise the profile of its health support services and further develop its health work was driven by two important factors:

The inadequate level of health support offered to people with spina bifida and hydrocephalus

The lack of action by Government on the prevention of NTDs

Both issues are raised passionately and frequently by Shine members, both through social media, at events, and via the Shine Adult Members Council (SAMC).

Shine has responded by launching three new initiatives under the new ‘Shine Health’ banner. These initiatives aim to help support members, improve services, and protect both mothers and children from unnecessary risk from neural tube defects, which not only lead to spina bifida, but also to anencephaly, where the baby has no chance of life - a heartbreaking situation for expectant parents, as members of Shine’s Anencephaly Support Group will testify.

  • Health Home delivery

Building on an established relationship with Bullen Healthcare, Shine Health Home Delivery was launched in April 2015 to offer a tailored service for Shine members who need regular stoma and continence products, offering prompt home delivery which can include your prescription drugs too. 

By providing a service which provides all the continence and prescription requirements in one place, our members will benefit from a more efficient and personalised approach in this important part of their lives.

Staff specially trained in dealing with spina bifida and hydrocephalus issues will manage the service and be on hand to remind members when new products/prescriptions are needed, they will also guide clients through checks on what is required, and be there for them if they have any difficulties.

For more information, or to sign up, click here!

  • individualshinehealthlogos hub

The Health Hub aims to offer all-round support to people with spina bifida and hydrocephalus, providing health checks for those able to visit the health suite, and telephone and online support to anyone with SB/H in need of help. 

All Shine’s health services staff are fully qualified nurses or Occupational Therapy. As well as offering general help, Robin Barnatt also specialises in keeping people mentally healthy. Gill Yaz, who manages our health services, has almost twenty years experience in working with people who have SB/H and parents diagnosed with an NTD pregnancy. We also have nurses on the staff in some of our regions and we are working to introduce a regional health lead in each regional team.

Through our Health Hub work we can offer support with any health issue affecting our members. We not only offer advice, but can help you in managing your relationships with the health services that you access within the NHS and elsewhere. 

To access these services, contact our health staff:

Gill Yaz (Health Development Manager)

  1. E: gill.yaz@shinecharity.org.uk
  2. F: facebook.com/Shine.Gill.Yaz
  3. T: 01733 555988

Robin Barnatt (Health Development Officer)

  1. E: robin.barnatt@shinecharity.org.uk 
  2. F: facebook.com/Shine.Robin.Barnatt
  3. T: 01733 555988

Kathy Allen (Occupational Therapist)

  1. E: kathy.allen@shinecharity.org.uk  
  2. F: facebook.com/Shine.Kathy.Allen
  3. T: 01733 555988

The health team welcome all your calls and enquiries.

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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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