This page pulls together useful information and sources of further help in the United Kingdom.
Help and Support
You can get a review of your circumstances with an experienced adviser. He/she can give you immediate advice, and can call on experts in available benefits, rehabilitation and mobility training, daily living aids, computer skills and so on.
The RNIB / Action for Blind People Helpline number is:
0303 123 9999
The RNIB Sightline Directory is an on-line resource where you can find information on local support organisations for visually impaired people.
BLIND IN BUSINESS aims to help Blind and Partially Sighted people into work through their Training and Employment Services.
Thomas Pocklington Trust provides specialist accommodation for visually impaired people. It also runs befriending and counselling services.
The Resource Centres provide information on the latest products, as well as organising activities and social events.
HENSHAWS Society for Blind People runs a specialist Further Education College. It also provides housing, vocational training and support packages.
The Macular Society provides services for people who have lost central vision due to Macular Degeneration, but they have also agreed to provide some support to people who have lost central vision due to LHON.
RLSB the Royal London Society for Blind People is a charity specialising in support for people aged 15 to 30 in the South East of England.
ABILITY NET provides free Information Technology support in your own home.
BRITISH BLIND SPORT has information and links to many sports which can be enjoyed by visually impaired people.
CHARITY CHOICE has a directory of UK charities who help people with visual impairments.
VISIONARY is a national association of local charities supporting people with visual impairment.
VOCALEYES has information on many audio-described films, performances and other arts events.
GUIDE DOGS provides assisstive dogs to visually impaired children and adults. After mobility training with a white cane, you might find that a guide dog or buddy dog gives you more confidence and independence.
BLIND CHILDREN UK help provide family support, rehabilitation, education and assisstive technology.
LOOK – National Federation of Families with Visually Impaired Children
This sectiion outlines the medical practitioners you are likely to meet in the UK. also see the page on Medical Tests.
High Street Opticians
For some people, their Optician (Optometrist) is the first person to spot symptoms of LHON.
When only one eye is affected, the visual system and the brain compensates for the damage, “filling” in the missing image from the unaffected eye.
You might notice a problem yourself, when the unaffected eye is shut, suddenly there is a bright patch, cloudiness or darkness in the centre of your field of view in the open eye.
If you have a standard eye test at an Optician’s, he/she will test each eye individually. This will highlight any loss of vision in either eye.
Once LHON starts affecting the second eye, the brain can’t compensate any more, and you will notice loss of central vision.
You might go to an Optician for a standard eye test, thinking that this is a focusing problem that can be fixed by normal spectacles.
The Optician will refer you to your General Practioner (GP or Family Doctor), or may even send you straight to the local eye clinic.
Although standard spectacles can’t help someone with LHON, some high-street Opticians sell magnifiers, monoculars and high quality sunglasses. Some people with LHON get benefit from these items.
High Power Magnifiers
LHON damages the central vision. This is where the most detailed image is formed by the eyes. Seeing anything with peripheral vision is more difficult.
Some people find that a magnifier helps them to read. This makes use of the eyesight they have left, but takes practice and patience to learn as a new skill.
It’s very important to realise that:
- Everyone is different, some people can get benefit from a magnifier, some can’t.
- You can get free magnifiers on loan from Low Vision Aid clinics so don’t rush out and buy magnifiers before attending one.
- Higher power magnification is not always better than lower power. Higher power is harder to use and you see less of the image. It takes a very steady hand, practice and patience to use high power magnifiers.
- Learning to use magnifiers is difficult and tiring.
Monoculars and Binoculars
Like magnifiers, monoculars and binoculars don’t work for everyone with LHON. Some people can get benefit from having one, some can’t. Read the earlier section on magnifiers, the same comments apply to Monoculars and Binoculars.
A Monocular is a small, pocket-sized telescope. Some can focus very close-up, so you might be able to use one to read large text a few feet away.
Although you can buy very high-power monoculars and binoculars, these are very difficult to use. You might find it very difficult or impossible to find the thing you want to see, and even the blood pumping through your arm will shake the image.
Again, a good Low Vision specialist can let you try a monocular to see if it works for you.
There are a few reasons why you should try out and buy some good quality sunglasses.
- Bright light and Ultra-Violet (UV) light damages your eyes. If you already have damage due to LHON you really need to protect what you still have.
- Bright light can make it difficult to use the eyesight you have left.
- Glare and polarized light can be dazzling and again make it difficult to use the sight you have left.
General Practitioner (GP) or Family Doctor
This is the front-line or Primary Care part of the Health Service. Your GP should be able to refer you to specialists.
- A specialist Eye Clinic with an Ophthalmologist
- A Low Vision Aid Clinic run by a specialist Optometrist
- Mental health Counselling or other Mental Health Services
A specialist in disorders of the eye and visual system. An Ophthalmologist usually works in one or more Eye Clinics.
Ophthalmologist is pronounced Op-thal-mol-o-jist.
If your GP has not diagnosed LHON from your personal details, family history and eye examination, the Opthalmologist should spot it. Most doctors in the UK will not have seen a case of LHON and may know very little about it. This is a little less common now that LHON is documented on the Web and is being researched in many countries.
This is a particular kind of Ophthalmologist who specializes in disorders of the Retina, Optic Nerve and the visual system in the Brain.
Low Vision Aid (LVA) Optometrist
This is an Optician or Optometrist who has specialist knowledge about magnifiers, monoculars and other aids to help someone who has very low vision.
In Moorfields they work in a Refraction clinic.
The NHS will issue some suitable Low Vision Aids on “permanent loan”
Losing sight is a huge emotional and mental blos, not just to the affected person but also to their family.
You might find that professional medical services are available to help deal with this aspect of LHON. You might find that stress and clinical depression develop, which need prolonged medical treatment.
A trained Counsellor provides talking therapy and can help people express their emotions in a constructive way.
A Clinical Psychologist can offer in-depth talking therapies, both face-to-face and in group sessions. This can include structured treatments such as Cognitive Behavioural Therapy (CBT).
This is a clinically trained medical doctor who specializes in mental health. He/she can offer drug-based therapies such as anti-depressants and anti-anxiety drugs.
There are a few doctors in the UK who carry out research into LHON. They work in academic research labs as well as medical clinics.
The Wellcome Trust is a major UK organization funding and managing research into LHON and other mitochondrial diseases.
This is a world-leader in research into LHON, and has been for many years. it is part of the University of Newcastle, Newcastle-upon-Tyne.
Professor Patrick Chinnery, Professor Doug Turnbull and Doctor Patrick Yu-Wai-Man are among the internatiionally-recognized experts in LHON who work here.
This is another internationally recognized centre of expertise in mitochondrial medicine and LHON.
It is funded by the UK Medical Research Council (MRC) and is associated with the University of Cambridge.
Professor Patrick Chinnery will become Professor of Neurology and Head of the Department of Neurosciences here in October 2015.
University College London (UCL)
The Institute of Ophthalmology and other medical departments such as the UCL Institute of Neurology within UCL are researching different aspects of LHON. This includes the possibility of Gene and Cell Therapy , basic research into the mechanism of LHON and any relationship with other conditions such as Multiple Sclerosis.
Moorfields Eye Hospital
Moorfields is the major eye hospital in City Road, London. It has outreach clinics in several other hospitals around the country.
The Applied Clinical Trials unit Involving Vision and Eyes (ACTIVE) works closely with researchers on clinical trials in the UK, including UCL.
Moorfields also has Low Vision Aid specialists.
Genetic Tests for LHON
An experienced doctor can usually diagnose LHON from the patient information, family history and eye examinations.
At the moment, knowing which LHON mutation you have is of limited use. If you are referred to a LHON specialist, they will probably take blood samples and order genetic tests as part of their research as well as diagnosis.
In the future, clinics might offer gene therapy for LHON, and then knowing exactly which LHON mutation you have will be important. That is because gene therapy only deals with one gene at a time, and LHON mutations have been found in several of the mitochondrial genes. See the page LHON and Mitochondrial DNA.
You do NOT need to arrange for LHON genetic tests, this is done by your doctors. However this page on UK Genetic tests is interesting as it shows the NHS cost of genetic testing.
Local Authority Disability Services
Contact your Local Authority and find out what support services they offer. This should involve a formal assessment of your situation and needs, and support from a Rehabilitation Officer and Specialist Social Worker.
This is a good route to check what local help and support is available through other organizations.
Ask what facilities, concessions or other benefits you are entitled to. This is likely to include a travel pass for local buses / railways and may also include free or subsidised taxi travel.
Being Registered Blind / Partially Sighted
In the UK each Local Authority maintains a list or register of people who are visually impaired. This is a confidential list, not available to central Government or any charities.
If your eyesight is impaired, then a specialist eye doctor called an Ophthalmologist will do a formal assessment of your vision. This covers Visual Acuity and Visual Field.
Visual Acuity is usually measured using the familiar eye chart of letters on a white background.
Visual Field tests check for any missing patches of sight such as the central loss of vision found in LHON.
The Opthalmologist will use the results of the tests to decide if you are “Sight Impaired” or “Severely Sight Impaired”.
Roughly speaking, to be classified “Sight Impaired” you will either have a Visual Acuity between 3/60 and 6/60 or have a Visual Acuity better than 6/60 combined with defect in your Visual Field.
Roughly speaking to be classified “Severely Sight Impaired” you will either have a Visual Acuity of 3/60 or less, or have a Visual Acuity of between 3/60 and 6/60 combined with a severe defect in your Visual Field (such as the large central scotoma in LHON).
Many people still refer to the classification “Severely Sight Impaired” as “Blind” and “Sight Impaired” as “Partially Sighted”.
The Ophthalmologist will issue a Certificate of Visual Impairment. As well as issuing the certificate to you, the Ophthalmologist sends a copy to your GP and to your local Social Services department.
Although you must ha ve this certificate to be placed on the local authority register, you can choose not to be on it.
However, being on your local authority register gets you access to benefits and concessions, such as any travel card, the Blind Person’s Tax Allowance, and VAT Exemption on specialist products.
Rehabilitation and Mobility Training
Rehabilitation training aims to give you renewed confidence in daily living skills. There are several courses run by Action for Blind People, Henshaws, Thomas Pocklington and so on.
Mobility Training develops your skills in travelling around, navigating a street, using public transport and so on. This includes how to use a guide cane properly to warn you of obstacles, steps or pitfalls.
It’s very important to build up your confidence in travelling around as this is a big part of being independent and self-confident. Contact your local authority Social Services about being trained in how to use a White Cane. Even if you don’t usually use a cane for guidance, a cane can be very useful to show others that you have very low eyesight.
White canes come in a range of styles and sizes so it is important to get trained and experienced help in choosing and using a cane.
Once you have built up your confidence you might prefer to use a Guide Dog, but many dog owners still carry a cane and use one at times. for more information on guide dogs contact Guide Dogs UK.
TV Licence Discount
Registered Blind people can get a TV Licence with 50 percent discount (half price). See the TV Licensing website.
Blind Person’s Tax Allowance
A Registered Blind person can claim an additional personal tax allowance.
Quoting from the HM Revenue and Customs website:
“If you’re certified blind and are on a local authority register of blind persons, or if you live in Scotland or Northern Ireland and are unable to perform any work for which eyesight is essential, you can claim Blind Person’s Allowance. If you can’t use up some or all of your allowance you may be able to transfer it.”
In tax year 2014-15 the allowance is £2,230
This is not a payment, it is an allowance added to your Peronal Tax Allowance before Income Tax is calculated and deducted.
If your annual earnings are not high enough to use this allowance, your partner may be able to claim it against his/her earnings.
If you are Registered Blind, you will be able to buy certain specialised products free from VAT. Check this if you are buying any product or service aimed at Visually Impaired people.
Access to Work and Reasonable Workplace Adjustments
If you are already employed, or about to start work, you may find that you need adjustments to your workplace to help you. These are known as ‘Reasonable Adjustments’ under the Equality Act.
Typical Workplace Adjustments might be:
- Changing the display/mouse pointer settings on your work computer.
- Installing Screen Reader / magnifier software on your work computer and providing training
- Installing braille output on your PC
- Providing magnification for documents, e.g. a professional standard CCTV system.
- Providing better workplace lighting.
- Installing a program so you can use the workplace phones through your computer
- Providing key material in large print, braille or spoken word formats.
- Providing pocket memo recorders to help take notes.
- Providing a Personal Assistant
- providing free or subsidised travel to and from work
The Government may provide some funding for Reasonable Adjustments under the Department for Work and Pensions Access to Work scheme, run by JobCentre Plus.
This is the plan for supporting Blind and Partially Sighted people worked out between the UK Government and several major charities representing people with visual impairment.
This page was last updated August 28 2015