The author shares his own experience of sight loss and explains the vital role assistive technology can play in the lives of visually impaired patients.
There is no doubt that sight loss continues to be a clear and present danger, bolstered by increasingly ageing populations, poor lifestyle choices and the impact of infections and systemic disease.
So how can assistive technology (AT) help this situation? My plea is that in the justified battle against many forms of visual impairment, low vision and even blindness, which includes improved screening and monitoring regimes, research into genetics and the identification of precursors, positive lifestyle messages and enhanced treatments and surgical techniques, the vital role that AT can play in rehabilitating patients is not lost.
To put this into context, in 2010, I lost my sight to a retinal inherited disease retinitis pigmentosa and duly launched the social enterprise VisionBridge (www.visionbridge.org.uk). I had struggled for some years with diminishing sight to read emails, recognise faces, navigate outdoors in glare or low light and generally manage the tasks in daily living that we all take for granted. It never occurred to me that technology including vision enhancement, audio-description, navigation and orientation could be so pivotal in the rehabilitation of patients with vision loss, dual sensory loss or even visual processing challenges.
In the face of so much scientific progress, you would expect the usual obstacles to maintaining a chosen livelihood and lifestyle, experiencing travel and leisure and indeed employment, to dissipate. However, all this progress is being made in the context of a growing number of challenges to eyecare provision in the UK.
For example, low vision care via the NHS is extremely varied and in some areas of the country only basic low vision aids and advice are available. Elsewhere, patients may or may not be directed to the voluntary sector and they are almost never signposted directly to specialist distributors, which can offer a much wider range of devices and technology plus vital ongoing wrap-around patient support.
Also, in many instances, hospital and eye clinic staff are not motivated or incentivised to advise on AT beyond the parameters of what they have and many are confused by the referral pathway around the voluntary sector, patient support groups and suppliers.
There is an over reliance on information from the internet and social media patient feedback and the charity sector, where the quality of advice is patchy and the hands-on training of patients on devices (as opposed to just offering advice) is inconsistent.
My discussions with consultants and their support teams in secondary care have highlighted how confused they are by the ever-widening range of AT available, the relevance of a specific device to a particular eye condition or disease, the risk of obsolescence and indeed the cost and value of such technologies.
Turning to patients and service users, they are neither experiencing optimal access to AT, comprehensive guidance in re-entering the eyecare system, access supported by trained advisors, nor provided with a clear routemap along the patient pathway. This means that patients’ understanding and awareness of AT is very low, they receive very little guidance or support when devices become obsolete or broken and they certainly do not understand how all stakeholders in eyecare complement each other, if at all, along the patient pathway.
In light of this feedback, which could be characterised as roadblocks to optimal patient outcomes, VisionBridge, in collaboration with a leading distributor in the UK, Sight and Sound Technology, has launched a series of online interactive AT sessions. They are designed for anyone interested in exploring how technology can improve patients’ mobility, confidence, independence and connectivity alongside improving the ability to gain and retain employment, sustain a lifestyle and remain in mainstream education.
VisionBridge is helping to put AT on the front foot. Now there is no need for those experiencing sight loss to solely rely on an annual event or the incomplete recommendations from a third party. With support from Sight and Sound Technology, VisionBridge can introduce patients to some highly innovative hardware, software and literacy support solutions that will help those in education, employment, on the move or simply to enjoy an improved quality of life. At the very least, we can give them the information and experience of handling equipment so that they can then make an informed choice.
We would like to apply the same educational principle to consultant ophthalmologists and other healthcare professionals too. We recognise just how confused they are by the ever widening and evolving range of AT and the brief, pressurised time they may have with each patient. We invite them to simply offer informed advice and guidance to their patients about experienced and trusted AT providers who can support them along their patient journey. They have an important role to play in helping to create and maintain a much clearer ‘line of sight’ between themselves in secondary care acting as ‘touch points’ for their patients and specialist distributors. We all need to remember that information about AT is not the same as making a recommendation and will give the patient much needed choice.
Personally speaking, AT continues to help me work, communicate and retain a measurable degree of mobility and independence. I am amazed by the ability of technologies and devices to evolve and make life just that little bit easier. Assistive technology is certainly not a panacea for sight loss. It does not pretend to prevent, treat or even cure. However, I strongly believe that it should be considered as a useful friend in times of crisis.
While the academic researchers and clinician scientists are focusing on cell therapies, drug delivery and surgical equipment, and opticians are promoting greater patient self-responsibility, I would urge all healthcare professionals including consultant ophthalmologists to explore the wonders of assistive technology and participate in an online interactive session now with an ethical, trusted and experienced national distributor for the ultimate benefit of their patients.
Visit the Sight and Sound Technology Youtube library to access previous sessions: https://www.youtube.com/channel/UCKMFiRDl9tp7E19PwXvCbNw
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