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Join our campaign to save the Chelsea and Westminster Spina Bifida clinic

  • Chelsea and Westminster Hospital

Shine recently learned that a unique specialist clinic, the only one of it's kind, based at Chelsea and Westminster Hospital, which has improved the lives of countless people managing the challenges of spina bifida since it's inception, is set to close in July.

Shine has an obligation to our members, many of whom benefit from the unparalleled expertise of the clinic's expert staff, and cannot allow this decision to go unchallenged.

If you or someone you know is affected by the condition, has benefitted from the clinic's services, or simply recognise the importance of services like these, please take a moment to lend your support to this petition.

It only takes a few minutes and is completely free of charge.  To add your signature to our petition, please click here 

Edit 20.04.2017

Shine has issued a press release to national media which included a link to an open letter which has been sent to the following people:

  • Simon Stevens, Head of NHS England
  • Dr Fiona Butler, Chair, West London Clinical Commissioning Group
  • Sir Malcolm Grant CBE: Chair, NHS England Board
  • Professor Sir Bruce Keogh: National Medical Director, NHS England
  • Professor Jane Cummings: Chief Nursing Officer, NHS England
  • Dr Fiona Butler, Chair, West London Clinical Comm Gp, NHS West London CCG
  • Leslie Watts, CEO
  • Zoe Penn, Medical Director, Chelsea and Westminster Hospital, NHS Foundation Trust
  • Sir Tom Hallett-Hughes, Chair, Chelsea and Westminster Hospital NHS Foundation Trust
  • Penny Mordaunt, MP, Minister for Disabled People, Health and Work
  • Debbie Abrahams, Shadow Minister for Disabled People

For a copy of the letter, or a template letter which you can use to write to your local MP and encourage them to get behind our campaign, see the download links below.

  • 12.04.17 Open Letter to Secretary of State for Health
  • Download file

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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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