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Add Your Voice to the Orthotics Campaign

    • orthosis
Rebecca Loo is on a mission: to revolutionise orthotics care in the UK. 
Children and adults with disabilities or medical conditions, including spina bifida, often need quality, well fitting orthotics such as splints and footwear in order to carry on living their lives to the full. However, delays, poor materials, or lack of funding often mean they don’t get what they need in time. The Orthotics Campaign aims to change this by challenging the system and educating health staff.
Shine has been in contact with Rebecca from the start, promoting the campaign and welcoming Rebecca to speak at our Shine40Plus conferences.
The campaign's efforts have already led to improvements in how children access braces, boots and callipers which will help their mobility and potentially save hospitals in England up to £22 million.
Rebecca knows why this matters. When he was nine, her son, David, needed a series of plaster casts to rectify a foot problem, but they took so long to arrive that David had already outgrown them. By then he was unable to get around unaided and had missed out on school.
Rebecca explains, "For children especially, delays mean they may be in pain, unable to walk or stand or to carry on with school life. It can also mean having surgery or amputation that could be prevented. All this can badly affect sleep, behaviour and overall wellbeing. We want the NHS to set clear guidance so that patients have good, consistent care." 
Rebecca would love to hear from Shine members. ‘The more we shout, the more we’ll
be heard!’ You can get in touch via and get in touch via  Facebook or Twitter @orthoticscampaign.
It is estimated that every £1 spent on orthotics saves the NHS £4 elsewhere.


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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