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Sight loss support

All treatment for glaucoma aims to lower your eye pressure to prevent damage to your optic nerve and your sight. But in some cases – especially when it’s not detected early – glaucoma can lead to sight loss. Unfortunately, once sight loss occurs it can’t be reversed and there is currently no way to restore the damaged nerve.

According to NICE (National Institute for Health and Care Excellence) there are around 350,000 people registered as sight impaired or severely sight impaired in the UK, and around 10% are registered because of glaucoma.

At Glaucoma UK our area of expertise is preventing sight loss due to glaucoma. However, there are many organisations in the UK who provide specialist support to people living with sight loss.

The Royal National Institute of Blind People (RNIB) is the UK’s leading charity for people with sight loss, and provides support, advice and resources.

There are also many local voluntary organisations around the country that help and support people with sight loss. You can find local support organisations on the Visionary website.

If your child is blind or sight impaired due to glaucoma, the Royal Society for Blind Children can provide you with information and support.

Registering as visually impaired

What does this mean?

If your sight loss is severe, you may choose to register as visually impaired. Depending on the severity of your sight loss you can either be registered as sight impaired (previously “partially sighted”) or severely sight impaired (previously “blind”).

If you have not already been referred to an ophthalmologist (eye specialist), the first step would be to get a referral from your GP or optician.

The registration process

Your ophthalmologist will measure your visual acuity (ability to see detail at a distance) and your field of vision (how much you can see from the side of your eye when looking straight ahead). These measurements will help your ophthalmologist decide if you meet the criteria to be certified. If you do, they will complete an official certificate with the results of your eye examination.

In England and Wales this certificate is called the Certificate of Vision Impairment (CVI), in Scotland it’s called BP1, and in Northern Ireland it’s called A655.

Your ophthalmologist will send a copy of the certificate to you, a copy to your GP and a copy to your local social services department. On receiving the certificate, your local social services or sight charity team will contact you to ask whether you want to be added to its register of visually impaired people.

Why should I register as visually impaired?

It is completely your choice whether or not to register, but there are some benefits to registration including:

Your local social services can also provide support to help you live independently, such as providing help with cooking and cleaning, and with transport or mobility, if needed.

Charles Bonnet Syndrome (CBS)

Do you have sight loss and are you experiencing vivid, silent, visual hallucinations? If so, you may have developed Charles Bonnet Syndrome.

Charles Bonnet Syndrome (CBS) is a condition which can develop in someone of any age after sight loss. This loss can be from one of the many eye diseases, such as glaucoma, or from a stroke, cancer of the eye, an accident to the eye, diabetes, multiple sclerosis or another condition which damages the optic nerve.

CBS is not a mental health condition but is caused by the loss of messages which usually run from the retina in the eye to the visual cortex in the brain. Once sight diminishes and the messages slow down or stop, the brain begins to create its own images. What is seen depends on which part of the brain is being used at that moment.

Please do not be afraid to reach out if you’re worried you’re experiencing hallucinations. Living in a world of uninvited images is not easy but there is help and support available from Esme’s Umbrella.