Founder of Visualise Training and Consultancy and Seeing Beyond the Eyes CET roadshow lead Daniel Williams has retinitis pigmentosa. In this article, he asks if it is time for a change when it comes to Certification of Vision Impairment (CVI).
Whilst recognition that you have low vision is an advantage, when it becomes a label on a numbered scale, the effectiveness of the registration process is questionable. The other troubling issue for registration of people with vision impairment is how unfair the system can be, denying them many crucial benefits and concessions.
To see or not to see…
Certification by an ophthalmologist gives you formal registration of being vision impaired and opens the door to referrals for social care assessment and many other concessions including financial assistance. You will be registered as sight impaired (partially sighted) or severely sight impaired (blind).
At present, to get the coveted award, known as The Certificate of Vision Impairment (CVI) you need to stumble into one of the following categories:
Sight impaired (partially sighted)
Your sight must fall into one of the following categories, while wearing any glasses or contact lenses that you may need:
- Visual acuity of 3 / 60 to 6 / 60 with a full field of vision.
- Visual acuity of up to 6 / 24 with a moderate reduction of field of vision or with a central part of vision that is cloudy or blurry.
- Visual acuity of 6 / 18 or even better if a large part of your field of vision, for example a whole half of your vision, is missing or a lot of your peripheral vision is missing.
Severely sight impaired (blind)
Your sight must fall into one of the following categories, while wearing any glasses or contact lenses that you may need:
- Visual acuity of less than 3 / 60 with a full visual field.
- Visual acuity between 3 / 60 and 6 / 60 with a severe reduction of field of vision, such as tunnel vision.
- Visual acuity of 6 / 60 or above but with a very reduced field of vision, especially if a lot of sight is missing in the lower part of the field.
…that is the question
This is where things can become tricky for certain eye conditions – you may find yourself stumbling into things on a daily basis, but, unfortunately, not falling into the above categories which still causes immense problems and visual difficulty for the patient.
The criteria, based on the keenness of your central vision – or acuity – judges the level of detail you can see, for which you will be asked to read down the eye chart. It also concentrates on your field of vision, which is determined by how much you can see around the edges of your central vision, whilst you look straight ahead. After assessment of the results, your eligibility is decided – win or lose.
Some patients really struggle to see which adversely impacts their lives yet will not meet the criteria.
Let’s be clear
A good illustration of this is a patient who has nystagmus. In addition to uncontrolled and repetitive rapid eye movement, they may struggle with sensitivity to various light conditions but have overall good acuity yet still fail to meet the criteria.
Another example of this may be a patient who has early onset retinitis pigmentosa with very good visual acuity and field. They will struggle emotionally with a diagnosis of a degenerative condition, they may struggle in the dark, to cook, clean and get out and about. So why can’t they be registered?
These are only two examples. Many people struggle with their vision, at whatever level, but do not get the tick in the right box to receive the support, advice and recognition they need to cope with their loss of sight. As a result, many patients slip through the system and end up alone and vulnerable.
Surely the time has come to reorganise and update this system to embrace a more holistic approach to measurement of sight loss, without the charts and numbers focusing on functional vision?
In other words, if someone is struggling to see properly, does it really matter if they meet a set of pre-determined figures? Some eye conditions, even with a relatively high acuity of 50%, leave patients battling to complete everyday tasks. They may also be living in fear of becoming blind or of coping with future degeneration.
The people who are in between who can’t drive and likely can’t read standard sized fonts even with glasses are unlikely to receive any form of disability benefit despite being very much at a visual disadvantage. They fall in no man’s land and are just as likely to need help, especially if they lose their driving licence or job as a result of sight loss.
Sue Ricketts, Executive Information and Development Manager with Nystagmus Network highlights the problem: “So many people with nystagmus fall between two stools; they can’t see well enough to drive, but they can’t get registered on visual acuity alone so can’t access concessionary fares on public transport. If they don’t qualify for Personal Independence Payments, there’s no help there for transport costs, taxi fares etc. either.”
Boxed in
What is the advantage of fitting people into a box? If you have a problem with your vision, you need to be referred to resources where help, advice and support is freely available.
The challenge appears to be how an individual can be assessed in terms of how their life is impacted by visual problems and how best to ensure limited resources are distributed fairly to give anyone who would benefit, access to the right technology and support.
At present the main focus for registration seems to be Visual Acuity (too often Snellen) which is a very limited tool – great for measuring and in the correction of refractive error but a poor indicator of useful acuity in the real world. Driving standards recognise that using Snellen acuity is a poor indicator of safe driving vision but they haven’t been able to come up with an alternative.
So yes, an alternative method for assessing functional vision is certainly needed in my opinion and would make a wonderful PhD project for multi discipline studies.
Receiving certification can be life changing as it significantly improves lives, yet ophthalmologists admit it can be difficult to ascertain if it is appropriate to certify a patient, especially if they have a long-term condition. This surely illustrates the need for a more consistent approach and to question why some patients are declined certification.
I know of many patients who meet the criteria yet are not offered certification so the system within ophthalmology must to be reviewed to address this. Optometrists also have a duty when they know their patient meets the criteria, but is not offered certification, to re-refer them for assessment.
Patients and eye care professionals, what do you think needs to change to improve things?
Best wishes
Daniel
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