We have had a busy start to 2018, and have launched two new sections. One is our Guest Blog section, and a blog by Professor Barry Kran, Director of Optometry at the New England College of Optometry and Perkins School for the Blind, has started off quite a conversation.
Prof Kran has identified many children with CVI, including the difficult more complicated cases where the child does not have low vision (in his blog he gives an excellent description of this). However, in some parts of the world optometrists are not permitted to diagnose CVI, because it is a medical condition, requiring initial diagnosis by a medical doctor. The medical doctors who are vision specialists are of course ophthalmologists, and while some do diagnose CVI, we receive many reports of a reluctance and even refusal to diagnose the condition, particularly in the absence of low vision.
This appears to be is a wide-scale problem, and there seem to be inconsistencies in who, how and where CVI can be diagnosed, if at all, not just from country to country, but even within countries.
So why is there a lack of consistency? It is as though we are being pushed from pillar to post, like we are always someone else's problem, but inevitably that someone else doesn't seem to want us either, with the notable exception of small pockets of dedicated individuals.
CVI is the new kid on the block, and it has been widely reported to us that many in the medical and vision professions have yet to catch up.
So, we think someone should start a conversation about this, starting with...
WHO? Who should diagnose CVI? In depth knowledge of the subject is essential to make any diagnosis. It is a medical condition and a visual impairment so should it be ophthalmologists who have mastered the subject? We know ophthalmologists have enormous workloads, but once diagnosed, the patient with CVI can be discharged from their care (unless they also have ocular issues), because, CVI whilst a medical condition has no medical treatment or cure (as Gordon Dutton explains in his blog 2). What about optometrists? They are not medical doctors, but are highly qualified vision specialists, and they diagnose other conditions, like short sightedness, and dispense corrective glasses. Could they become sufficiently expert? Developmental paediatricians can identify other developmental issues, so could train in CVI as well. We are not suggesting any answers, just that the key professions get their house in order and together master the brief.
Very rarely have we come across parents who have received a clear diagnosis and lucid explanation of their child's difficulties. Something will have to change.
HOW? Here is a problem, we know that the diagnostic criteria can vary around the world and the required widespread agreement for implementation of diagnostic and habilitational
services has yet to be reached, so this needs to be put very high on the agenda for discussion, because of...
WHY? The scale of this problem, that is the extent of lack of access to diagnosis for those with suspected CVI internationally is simply enormous. The numbers are huge, estimates with one in 200 to one in 100 children probably being affected in industrialised nations. What other medical condition has those sort of numbers, yet is so widely undetected and unaccommodated?
One of the challenges is that CVI is considered to be akin to OVI (ocular / eye visual impairment), but this is not always a good fit. We wrote an introduction to an important paper (CVI v OVI paper) considering this point, which noted:
Educational strategies designed to increase independence and functionality in children with ocular visual impairments are largely ineffective, and perhaps even detrimental, when applied to children with CVI.
There is a great need for widespread education highlighting the unique needs of the people with CVI we support. One area where CVI may go unidentified is following brain injury or stroke in adults. We think everyone who sustains any sort of brain injury should undergo a salient CVI test. The answers to a few simple questions can give a good indicator to determine whether further investigations are warranted - but who should carry out these further investigations and where?
This is the problem.
We come across pockets of people who understand our challenges and are working to help in terms of developing strategies, raising awareness and fighting for change, and we need to show our support for their work.
One such group we have been learning about is the Laboratory for Visual Neuroplasticity at Harvard Medical School. Their images are stunning (links below) including three dimensional images of two rotating brains, one with and one without CVI, showing the dorsal and ventral streams. The nature of reduced visual capacity of the brain affected by CVI is explained in Gordon Dutton's blog 18, drawing parallels with the number of brain processing channels and number of airport security queues, and what happens to the crowds when there are fewer channels available. Another of their films shows a virtual reality test investigating perception skills in a crowded school hallway. This test can tell us a huge amount about the person's challenges and experiences, which in turn can help direct the development practical strategies to cater for such difficulties.
These films and Gordon Dutton's blog all confirm that CVI is unique to the individual child, and generic approaches can be inadequate or even detrimental. Dr Amanda Lueck in her guest blog explains this beautifully, demonstrating the need to approach each child with no preconceptions. We loved Amanda's quote:
Each child is a universe, and each universe has its own rules, checks and balances.
We keep pushing for wider understanding because the accommodations that can be life transforming for the person with CVI, often cost nothing other than time and knowledge. Nicola McDowell made us laugh with her blog 16 'Sporting Hero to Sporting Zero', but she showed that with knowledge she realised she didn't have to give up her beloved sport altogether. Gordon Dutton's blog 19 explained how simply making language meaningful one can open a world of understanding for the person with CVI, a world they can engage in.
This is why we are so passionate about what we do at CVI Scotland, as our children and the adults with CVI can't wait for everyone to work out who should be doing what and how. This could take years, even decades, when all along simple strategies can prove life changing.
We wrote the Home section, so that parents and carers and those closest to the person with CVI can learn for themselves the support they can give that is life changing. Our latest section is about emotions. There is a lot published around emotional development and challenges where there is absence of vision or low vision, but CVI is different, as vision can be inconsistent unreliable and untrustworthy, and these OVI strategies are not always useful.
Children with CVI can have atypical emotional reactions, for example some get upset when a child cries or if voices are raised. Others choose to be isolated because they don't 'get' the nuances of social interactions. This section is to help you figure out why, by explaining a little about emotional development, with CVI and how to apply it.
We want to do whatever we can to help all the communities supporting people with CVI come together to figure out who should be doing what, because too many people with CVI are slipping through nets, are going undiagnosed, or having behavioural labels attributed. With this in mind we have set up a new free service, enabling research workers undertaking beneficial ethically approved research into CVI, to seek participants. The first to advertise is the Laboratory for Visual Neuroplasticity, who are looking for participants for their study, from Northeast USA.
We are a large community. Leaving local practices, models and approaches aside, we need to push for discussions around diagnosis and empowerment of those with CVI to take place, both within our own countries and internationally - because without the correct understanding and support, those with CVI face enormous challenges. Yet with knowledge (not expensive purchases) their lives can be transformed for the better, significantly diminishing the strain on the public purse.
The CVI Scotland Team
PS Everything new can be found in our Updates section and via Twitter @scotlandcvi and our Facebook page.
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At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.