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Online brain tumour support groupsCoping with sight problems
If you are told your sight problem is long lasting, there are many emotions that you might experience, such as that similar to grief, but it's important to know you are not alone and there are support teams that can help.
Tips to help you cope with particular sight difficulties
Typoscopes (a piece of card/paper with a window in the middle) can help with reading. You match up the typoscope with the page so it's easier to see where the beginning and end of each line is.
Prisms (a special type of lens that moves the image of an object) may help compensate for visual field loss. These move the image up, down, left, right or diagonally. At the beginning, this movement can cause confusion and headaches. However, over time, people adjust to the prism and can be taught how to scan the area around them with their new glasses. For short-term use, a prism can be stuck onto your glasses, or for long-term use, a prism can be included in your lenses.
If your central field of vision is good, glasses with small mirrors attached (hemianopic glasses) and inverted telescopes can help.
Your ophthalmologist or optometrist can refer you to a low vision clinic for an assessment for these tools.
Scanning and training methods can help you adapt to field loss. Your mobility officer or sensory mobility team can teach you how to use these methods.
You may be referred to an ophthalmologist automatically or can ask to be. They will test the cause of double vision and may refer you to an orthoptist for treatment. Treatment options can include one or a combination of:
- glasses
- prisms - Fresnel (temporary) prisms are most commonly used first. These are thin sheets of plastic with grooves, which are stuck onto your glasses. The power needed can vary, so you'll be advised to trial them for a few months before having the prism permanently included into your glasses
- operations - you may need an operation to strengthen or weaken one or more of your eye muscles, so that both eyes are aligned again. These don't always last forever, so you may need more than one operation
- eye exercises - eye exercises can be given to strengthen muscles for certain types of double vision. Please talk to your optometrist or orthoptist for more information
- occlusion (covering of an eye) - blocking (occluding) vision in one eye can stop double vision that occurs when both eyes are open. This can be done by wearing a patch, opaque (cloudy) lenses or eye drops in the better eye.
Short-term solutions for light sensitivity can be small changes, such as wearing large hats, sunglasses or tinted spectacles. These can help with glare but they may make it harder to see where you're going. In very serious cases, prosthetic contact lenses reduce the amount of light entering the eye (please discuss with an optometrist).
You may be advised to wear blue-blocking spectacle lenses. Some patients find these help with glare by blocking certain types of light. However, at the moment, the best scientific evidence does not support that these lenses can help symptoms.
The position of extra light is important to help you to see better without causing too much light sensitivity. Lighting can help you read if placed in a position where it causes the least amount of glare. A lamp below eye level that shines onto the book works best. It's also good to avoid shiny surfaces if possible, such as a polished desk.
For mild dry eye, the most common short-term treatment is eye drops. Your optometrist can recommend which drops to use.
Your eyes can be protected by wrap-around glasses during the day and your eyelid can be taped closed at night. If your eye is very dry, you can use punctal plugs. These block the ducts in your eye to stop tears being drained. They can be removed once the palsy has had time to recover.
If the palsy doesn't resolve within six to eight weeks, there are many other longer- term treatments, including surgery, to help your lid close. For other solutions please speak to your optometrist.
Most people with acquired nystagmus have a specific direction they look in where their eye movements are the slowest. This is called a null point, and as there is no treatment for acquired nystagmus, it's normally advised that you tilt your head so that your eyes are in this position.
A member of your eye health team can help teach you about your null point. If the acquired nystagmus is extreme, surgery can be used to help place your eyes in the null position to stop you having to tilt your head.
Some patients with nystagmus find contact lenses give clearer vision as the lenses move with the eyes. Others find the contact lenses harder to put in as the eyes are wobbling and find glasses shield some of the eye movement so are more aesthetically pleasing.
Worried about your sight?
Use BRIAN’s quality-of-life tracker to monitor any new or changing vision problems. You can use the results to ask for a specialist appointment to help give you the skills and equipment you need to adapt to your sight problem and keep up with hobbies and everyday tasks.
BRIAN is our trusted online app where you can track your experience, compare it with others who’ve been there and get the knowledge you need to make informed decisions.
Download our BRIAN app on the App Store Download our BRIAN app on Google Play
Can I still be independent?
To help you move from place to place, a member of your eye health team may advise using a long white cane, a guide dog, or teach you how to scan the area around you (called orientation and mobility training).
Some simple changes around the house can involve using contrast to help you tell the difference between similar objects.
A few changes could include:
- plain white plates on black placemats
- extra lighting on work areas, such as kitchen work tops
- tactile buttons for the hot and cold taps
- a liquid level indicator which will beep when a cup is full
- large button phone
- large print books
- e-readers.
For more ideas, there is a brochure of a range of products available at partsight.org.uk.
Reading with vision problems can cause you to feel tired. You can consider audio books, newspapers and magazines. There are also many other talking devices, such as watches, timers and software, that can read information from your computer screen.
Some TVs have audio description (AD), which gives a running commentary on many programmes. There are also different settings for the contrast and brightness on TVs, which can be changed to suit your needs.
One of the difficulties of sight loss is that there's often no outward sign of any disability. This can cause confusion and difficulties in a public/social environment. The Partially Sighted Society has a range of Symbols of Visual Disability items in the forms of badges, arm-bands and lanyards that can help with this.
Can I work with a vision problem?
Your employer, by law, needs to make basic changes to accommodate your vision problem, such as changing your equipment and allowing you to return to work in stages, including flexible hours or part-time working.
To help with your vision problem, some computer programs can read Microsoft programs out loud. Others can scan written print straight to your computer as larger text, so it's easier to read.
Other changes may need to be made for you to continue working. Visit the Access to Work scheme, gov.uk/access-to-work, which can offer you methods and possible funding for equipment. It can also offer training to help you carry on working and help with your journey to work, such as help towards paying for taxis to work. An officer in your workplace will carry out an assessment to decide what changes are needed. We recommend you access this scheme as soon as possible as, occasionally, the equipment can take months to arrive.
View our employment resources for more information about staying in, returning to our looking for work.:
- whether and how to tell your employer about your diagnosis
- tools to help your employer or colleagues understand the possible effects of a brain tumour
- your rights within the workplace
- suggestions for 'reasonable adjustments' that your employer can make to support you
- a list of specialist organisations that can help you
- There is also a resource specifically for employers.
Registering as sight impaired or severely sight impaired?
If your vision problem has reached a certain level, you may wish to be registered as sight impaired or severely sight impaired. Your ophthalmologist will do some tests. These will show whether you fall into either of these two categories. They can then complete a certificate of vision impairment for you, which is sent to your local services department who will add you to the register.
A team will visit you at home to help you decide what help you require. With the certificate, you could be entitled to discounts for public transport, TV licences, and tax and Personal Independence Payment (PIP). Book a telephone appointment at our benefits clinic for more information about the types of benefits you may be entitled to.
Long-term care of vision
It's important to continue having regular eye exams, even if you have been told your vision can't be improved, to check your eyes for any changes. There are still many tools and strategies that can help you adjust to your new life.
Your eye test will be free if you're registered as sight impaired or severely sight impaired or meet another NHS category. Additionally, any UK resident can get a free NHS eye examination in Scotland.
If you find it difficult to get to your optician, you may be able to have a home visit. To find out more, speak to your local optician or call 111, a free NHS urgent medical concern helpline. (In some areas of Wales, the 111 number is not available, so please use 0845 46 47 instead. In Northern Ireland, please use servicefinder.hscni.net/ to find your local optician.
How do I get help studying with vision problems?
If your child is struggling at school, The Partially Sighted Society design and print bold lined stationery and other specialist equipment for students with a vision problem. A free child-centred V.I. Assessments are available by request at partsight.org.uk.
Disabled Students' Allowances (DSAs) is a scheme which should assess your needs and provide suitable equipment and training to help you begin or continue your education. Your university or college will have a disability advisor who could signpost you to accessing help and support.
If you're looking to attend a university, some useful questions to ask could be:
- what public transport is available?
- what is the campus layout?
- is there any specialist equipment available?
- how accessible is the accommodation?
There are various schools and colleges specifically designed for those who are sight impaired or severely sight impaired:
- RNIB Pears Centre for Specialist Learning, Coventry
- RNIB Sunshine House School, Northwood
- The RNIB College, Loughborough
- The Royal National College for the Blind, Hereford
- Queen Alexandra College, Birmingham
- WESC Foundation, Exeter.
Driving with a brain tumour
If you've been diagnosed with a brain tumour, the law states that you need to tell the DVLA or the DVA as soon as possible. Find out more.
Your general practitioner (GP), neurologist (brain specialist) or ophthalmologist (eye specialist) will check the impact of the brain tumour and should be able to confirm if you can still drive.
Leisure activities
Audio descriptions of museum exhibitions, theatre productions and films are available in different areas of the country. Vocaleyes.co.uk will provide information on art events around the country tailored for people with vision problems.
Many festivals allow free entry to vision guides who accompany people with vision problems.
There are also allocated seats in some football grounds for those with a vision problem. Audio commentary headsets are available for a range of sports, including football and rugby.
You can also still participate in sports you already enjoy, or learn a new sport. britishblindsport.org.uk has information on a variety of sports, locations and competitions where they'll help you adapt to play the sport of your choice.