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Who supports carers?

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You may feel alone as a carer, but you are not alone.

Contacts for local support groups can be found through the internet by searching your local council website. You may also like to contact your local Shine Support and Development Worker?

Here are some useful links to groups supporting carers:

Carers UK

Carers UK wants society to respect, value and support carers. It helps carers:

• get the best for the person they care for

• make the most of their income

• stay in paid work

• keep healthy

• get in touch with other carers for support

• find a listening ear

• campaign for change.

Visit: www.carersuk.org

The Princess Royal Trust for Carers

The PRTC was created on the initiative of Her Royal Highness The Princess Royal in 1991. At that time people caring at home for family members or friends with disabilities and chronic illnesses were scarcely recognised as requiring support.

For nearly 20 years, The PRTC has been fighting to provide carers with the support they so desperately need. The Trust understands that few of us plan to become carers, so when a caring role starts, every carer needs an expert to guide them through the maze of services, rules and entitlements.

For a carer, this can make the difference between keeping and losing their job, or between staying healthy and collapsing under the stress.

At the heart of The Trust is a unique network of 144 independently-managed Carers' Centres, 89 young carers' services and interactive websites which deliver around the clock support to over 424,000 carers and approximately 25,000 young carers.

Visit: www.carers.org or www.youngcarers.net

Contact a family

Contact a Family provides support, advice and information for families with disabled children, no matter what their condition or disability.

Last year, Contact a Family helped over 300,000 families with disabled children.

Visit: www.cafamily.org.uk

Sibs

Sibs support siblings of all ages who are growing up with or who have grown up with a brother or sister with any disability, long term chronic illness, or life limiting condition. It also supports parents to help support siblings with sibling issues such as giving attention, explaining disability and dealing with siblings’ feelings.

Visit: www.sibs.org.uk

News

New Educational Lead shares her heart for families and schools

Shine is delighted to welcome Jan Tippett as its new Education Lead. Besides being…

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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