Your journey through the NHS is likely to start with your GP or an optician. Remember, the NHS is there to support and advise you. We are here for you every step of the way.
The initial diagnosis of inherited sight loss often begins with discussions with your GP or an optician. You might express concerns about your eyesight to these professionals and they will seek more specialist support to make an informed diagnosis of your condition. Typically you will then be referred to an eye consultant (called an ophthalmologist) so testing and diagnosis confirmation can take place at a hospital or eye clinic.
Sometimes an optician will be able to identify the signs of some forms of inherited sight loss from routine eye examinations; modern eye tests include examination of the view of the back of the eye (called the fundus). The optician cannot make a formal diagnosis, but will refer to someone who can. Although you are then typically referred to an eye consultant, your relationship with your optician should be maintained as they continue to play an important role in screening for health issues. Your optician will not automatically be provided with a report about your condition from your consultant so you should ensure you inform them yourself.
Another area that an optician will be able to help you with is with access to low vision aids. To assess your needs they will discuss activities such as reading, household tasks, light glare, travel, the workplace, television viewing, school requirements and hobbies and interests.
In the UK, opticians can be either ophthalmic opticians (called optometrists) or dispensing opticians. An optometrist deals more in depth with eye health than a dispensing optician. They should have the ability to diagnose and treat visual disorders or diseases that can arise. For example, for people with inherited sight loss, they may help to detect the onset of glaucoma or cataracts, again referring to specialists when necessary.
General Practitioner (GP)
After referral your GP will be updated about your eye condition by your eye consultant, writing letters about their assessment of your condition. These letters inform the GP so they can assess the wider impact of your sight loss and identify with you any other needs you may have to ensure you obtain the correct level of support.
When you see your GP after diagnosis, you may have questions. Although you may have been given an explanation of your condition at the eye clinic, you may have thought of more since that time. It may be possible for your GP to answer general questions but for more specific issues, a further referral to the clinic may be required. Don’t be afraid to insist on this, as you are entitled to answers. Alternatively, a letter from the GP to the consultant may of help.
Once you understand that your eye condition is genetically determined, you may become concern about it affecting other family members. Genetic counselling can assist in the understanding of inheritance patterns and how some members of a family are affected but others are not.
The eye consultant (ophthalmologist) is the person you will see following consultation with you optician and / or GP.
You have the right to be referred by your GP to a hospital and consultant of your choice, dependent on availability of appointments. There are many good ophthalmologists and eye clinics across the country. Ask to be referred to a retinal specialist who has experience of inherited sight loss conditions.
Other factors to take into account:
- Geography and costs as you will be travelling regularly to the clinic.
- If other family members are affected, do they use a particular consultant they would recommend?
- Some consultants are experts in a particular type of patient, condition or syndrome (called sub-specialisms). You may find it helpful seeing someone who is trained and has understanding of something specific to you.
You may have your near and distance vision checked. Distance vision is checked with a letter chart of the kind used by opticians.
You may have drops in your eyes to dilate your pupils. These will blur your vision, particularly for reading and in bright light. This blurring is only temporary and will last between two to four hours. If you wear contact lenses, these will have to be removed when eye drops are used, so remember to take the container for your lenses with you.
You may also have your eye pressure checked and the consultant will examine your eyes with a microscope or ophthalmoscope.
You may have a blood test and a urine test and how fast your vision adjusts when you move from a bright area to a dark area may be assessed.
When the tests are finished you may see colours, dim spots and some bright lights. This is normal, and will soon disappear. For this reason it is good to have someone to go with you to the hospital.
Questions for your consultant
Ask questions about your condition or how it might affect your life. You shouldn’t feel rushed or as though you’re wasting the consultant’s time – it’s your appointment. You might like to take a friend or family member with you as you may get a lot of information and remembering everything alone could be difficult. You might also like to take notes, so you can refer to them later. Usually a report is sent to both you and your GP after your appointment. Not all will be relevant to every person with inherited sight loss, but below are some questions you might like to consider asking.
- Are only my eyes affected?
- How did I come to have this condition?
- How will my vision be affected in the future?
- How good is my distance and near vision?
- Is there any difference between my two eyes?
- Would glasses or contact lenses help?
- How good is my field of vision?
- Can I continue driving and if so, do I have to inform the DVLA and my insurer about my eye condition?
- Are there any visual aids which would help me?
- Should I be legally registered sight impaired or severely sight impaired? If so, would this help me?
- Are cataracts present and if so, is an operation advisable?
- Is any other eye condition present apart from inherited sight loss?
- How often should I get my eyes checked?
- Are there types of work I should avoid?
- Is my present job something I will be able to continue with or should I be retrained?
- Are there any aids which would help me in my job?
A genetic diagnosis provides valuable information for you, your family and your doctor. It may confirm the inheritance pattern and allow your ophthalmologist to reach a more precise diagnosis of your condition. In addition, many of the new treatments currently being developed are designed for a specific genetic fault, so knowing your genetic diagnosis might provide options about receiving treatments or taking part in clinical trials. Although a genetic diagnosis will not always lead to treatment options, many people find they feel a benefit from “knowing” and understanding the cause of their sight loss.
Although genetic counselling is very different to psychological counselling, genetic counsellors will help families think about the wider implications of finding out about genetic risk or diagnosis. They will be able to support you in making decisions about testing and talk to you about how you are feeling about any issues surrounding this.
A visually impaired person can register themselves as such, a process referred to as registration. This is a voluntary process and not every visually impaired person chooses to register themselves. Receiving registered status can allow access to certain services and concessions.
Registration comes at two levels; sight impaired (often called partially sighted) and severely sight impaired (often called blind).
Your ophthalmologist is the person who will assess whether you qualify for registration and if they think you do qualify, they will complete a Certificate of Vision Impairment (CVI) (form BP1 in Scotland) and send it to your local social services department. The department will then contact you to find out what help and advice you need.
Registering for adults
When it is difficult for you to read certain lines on a sight test chart or to see people and objects at the side, being registered as sight impaired or severely sight impaired may be considered.
Registration for adults provides many financial and social services benefits which are likely to be helpful. Comprehensive details of the benefits and advantages of registration can be found at the RNIB website, or you can call their helpline for more advice on this subject on 0303 123 9999.
Registration for children
Although an ophthalmologist may suggest registration for a child, it is important for you and your family to decide whether you feel it would benefit him or her overall. Your child should be included in the discussion and you should give them the opportunity to express their feelings about registration, in addition to considering the financial and service benefits. At the time, they may choose not to register and this should be respected. If circumstances alter or attitudes about registration change, then it can always be done at a later date.
Some local authorities will issue a credit card sized registration card which can be very useful in gaining access to some national and local facilities, or gaining relevant concessions. The card should have the name, logo and contact details of the issuing agency as well as your name and postcode, and certification that you have been registered either sight impaired (partially sighted) or severely sight impaired (blind). Some local authorities may require a photograph; at present there are no national standards for the cards.
A key source of information, advice and support is your Local Authority’s social services department. Their Deaf and Visual Impairment Team (also sometimes called the Sensory Impairment Team or simply the Sensory Team ) is a group of trained, qualified professionals in place to help you get the help you need. You can get in touch with them by checking your local authority’s website or contacting them via telephone. Alternatively, local visual impairment charities and groups can often tell you how to contact them.
Usually you will need to be registered as sight impaired or severely sight impaired in order to have your needs assessed by the team. If you are not registered, they will guide you through the process. If you are not eligible for registration, the team may not be able to assess you formally, but will still be happy to offer you information and advice on local groups and organisations, support services, and other resources in the area that may be of use to you.
If you are eligible for an assessment, usually a specialist Rehabilitation Officer will do this with you. They will work with you to understand the support that you need in order to do the things you want to in life. Depending on your needs, the support they offer may include equipment and any training to use it, information and advice, contact with local groups and charities, or a support worker. They will also be able to refer you to other services that can help you, such as Guide Dogs.
Many of these teams have established good links with local hospitals and eye clinics, and it may be worth asking at the clinic if there is a Link Worker you can speak to, or that can contact you. This is a member of the team that has a direct link to the clinic, and will be available at the clinic so you can talk to them at your visit.
Each team will also have specialist workers that support people who have dual sensory impairment, so if you have problems with both hearing and seeing, they will be able to help you.
Diagnosis of an inherited sight loss condition can be stressful. There are many sources of help available, from formal professional counselling, which can be very structured and valuable in helping you come to terms with the prospect of sight loss, through to friendly helplines, to social groups and online networks.
Support from healthcare professionals
Many of the eye clinics and hospitals are supported by Eye Clinic Liaison Officers (often shortened to ECLOs) who will signpost you to sources of support including trained counsellors. Some hospitals, including Moorfields Eye Hospital in London, have counsellors available who specialise in sight loss, however not all NHS Trusts will provide this. Your GP will be a good source of advice as to what professional services are available in your area.
Counselling services are also available on a private basis or through various sight loss charities.
As well as counselling, a wide range of other support services are available from a variety of organisations.
- Your local Social Services Department can provide guidance on many practical issues as well as access to their own support services.
- RNIB (Royal National Institute of Blind People) has great information on their site about living with sight loss or the prospect of sight loss and also run a helpline.
In each county and in many major towns there are local societies and associations for visually impaired and blind people.
The internet too can be a place of support; Facebook groups in particular are a popular place to speak informally with others affected by sight loss condtions. The Retina UK Information & Support Group is good place to start.
Do remember however that some public internet forums are not monitored or moderated, so take measures to ensure you are both safe online and not exposed to misinformation, particularly about the availability of treatments.
Our Discover Wellbeing resource is designed to support those affected by inherited sight loss to be able to recognise and better manage the impacts on their emotional wellbeing.
This free-to-access course is designed as early intervention, to normalise the conversation and help people to feel confident to ask for support if they need it.
There are three pathways – Early Stages, Living with Change and Supporting Others (CPD accredited). Each comprises an introduction, pre-course questionnaire, five modules with videos and guided practical activities to help embed the new knowledge or skill, followed by a post course questionnaire.