Use of assistive technology can have a huge impact on quality of life for people with impaired vision, including those with diabetic retinopathy. But provision and access are often patchy. Julian Jackson Founder and Director of the independent social enterprise VisionBridge talks about his work in bringing the benefits of these technologies to more people with low vision.
There is no doubt that diabetic retinopathy (DR) continues to be a clear and present danger. The statistics around diabetes and DR are sobering. They point to well over five million people with diabetes in the UK by 2030, increasing prevalence of DR amongst the under 40s, the heightened likelihood of contracting DR and related eye diseases as a result of diabetes and the increase in obesity, which is a major risk factor in developing Type 2 diabetes.
So how can assistive technology help this situation? My concern is that in the battle against DR, 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 assistive technology can play in rehabilitating patients with consequential low vision, or even blindness, is being overlooked.
To put this into context, in 2010 I lost my own sight to a retinal inherited disease – retinitis pigmentosa. 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. Many of these symptoms will be recognised by those with varying degrees of DR. It never occurred to me that technology could come to the rescue in so many ways. I discovered that there is a world class army of researchers sitting upstream of our opticians’ practices, clinics and hospitals, who are working tirelessly to prevent sight loss, treat eye disease, restore sight and, indeed, rehabilitate patients, using assistive technology and other means.
Variability in low vision care
In the face of this progress in assistive technology, the usual barriers to maintaining a chosen livelihood and lifestyle, experiencing travel and leisure and, indeed, employment will continue to fade away.
However, despite this innovation and entrepreneurial activity, low vision care via the NHS in the UK is extremely varied. In some areas of the country, there are hospital-based low vision clinics, where hand-held magnifiers, unioculars and basic low vision aids and advice regarding lighting and using apps on tablets or mobile phones are available free of charge. Patients may be directed to other charity services where they can see a selection of technologies available, but only rarely are they directed to a manufacturer or distributor that could supply some of these technologies directly.
The option to attend an NHS clinic free at the point of delivery is hugely variable across the UK and, whether the clinic is in a hospital, community setting, or within a private optician, practice is also very patchy.
Clinics rarely show or demonstrate more than a tablet or Kindle within that setting. It depends on the budget and protocol of the NHS clinic as to who can be referred, how many aids can be supplied and so on. There are large regions of the UK with no NHS low vision services, where what happens within local optometric practices may be even more varied, but may include access to more technology in some settings.
Hospital and eye clinic staff are not motivated or incentivised to advise on assistive technology, beyond the parameters of what they already have. Many are confused by the referral pathway around the voluntary sector, patient support groups and suppliers.
Meanwhile, eye healthcare professionals’ training is extremely variable (ranging from a one-day course or five-month Masters course to a specialist degree) and they can find it hard to keep up with the pace of development of the technology. These professionals rely on Eye Care Liaison Officers (ECLOs) to distribute information and signpost patients, but are not clear about ECLOs’ level of training. They rely on local charities and look online for technology and patient experience updates.
There is an over reliance on the charity sector, where the quality of advice can be patchy and the hands-on training of patients on devices (as opposed to just offering advice) is inconsistent. There is also widespread resistance amongst eye healthcare professionals towards recommending a particular company over another.
Turning to patients and service users, they are neither experiencing optimal access, comprehensive guidance in re-entering the eyecare system, access supported by trained advisors, nor provided with a clear route map along the patient pathway. This means that patients’ understanding and awareness of assistive technology is very low. They receive very little
guidance or support when devices become obsolete or broken and they certainly do not understand how all
the stakeholders in eyecare complement each other – if at all – along the patient pathway.
All of the pointers above relating to patients and eye healthcare professionals in primary and secondary care can be seen as barriers to optimal patient outcomes, including among those with DR.
Against this backdrop, I launched the independent social enterprise VisionBridge to platform my work as a campaigner, fundraiser, advocate for eye research and facilitator of development funding for start-ups and spin outs from universities and the private sector.
I am passionate about not only financing innovation, but also ensuring that the right hardware and software gets into the right hands at the right time along the patient referral pathway, via those healthcare professionals tasked with supporting the visually impaired.
My discussions with local optical committees, optical societies, patient support groups and many hundreds of practitioners, consultants and related healthcare professionals, in both primary and secondary care sectors, have highlighted just how equally confused they are by the ever-widening range of assistive technology available, the relevance of a specific device to a particular eye condition or disease, the risk of obsolescence and the cost and value of such technologies.
In light of this VisionBridge, in collaboration with Sight and Sound Technology, has launched a series of online and offline interactive assistive technology 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 assistive technology on the front foot. With support from Sight and Sound Technology, VisionBridge can introduce patients with DR and wider visual impairment issues to some highly innovative hardware, software and literacy support solutions that will help those in education, employment, on the move or those who simply want 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.
Supporting healthcare professionals
VisionBridge and Sight and Sound Technology are applying the same educational principle to eye health and other healthcare professionals. We know that they are aware of gaps in their knowledge about technologies, frustrated by inconsistent and incomplete sources of information and expert advice to which their patients could be ideally referred and have little time to visit events. However, they still want to provide informed advice to their patients and give them the knowledge and confidence to choose the assistive technology that really suits them and to get the best out of it. They are looking to trust a dedicated provider who can offer them a commercial model and focused guidance around particularly new technologies and devices (including the compatibility of such technology for those patients with dementia, learning difficulties or other conditions), while at the same time taking the ‘sales pitch’ sting out of any demonstration or interactive session for themselves or their patients.
Technology – a ‘friend’ for low vision
Personally speaking, assistive technology 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 DR. It does not pretend to prevent, treat or even cure this blinding disease. However, I strongly believe that it should be considered as a useful friend in times of crisis.
Here are just two examples:
The Focus 40 Braille display gives me the independence to easily use Braille wherever I am. From presenting at major international conferences, to sending a quick text as I jump on a train, or reading a bedtime story to my granddaughter, it’s never been as easy for me to truly embrace so much digital content at my fingertips.
The PEARL Camera from Freedom Scientific allows me to scan multiple pages of text and have them read aloud instantly through my PC or laptop computer. The OCR engine is lightning fast and incredibly accurate. I am able to use the PEARL Camera to scan letters, utility bills and cooking recipes as well as more substantial bodies of text such as text books, novels and newspapers. Paired with the OpenBook software I am also able to edit the text I have scanned. OpenBook allows me to customise the presentation of the text on the screen by adjusting certain enhancement tools such as the magnification, contract and layout. The Pearl Camera with OpenBook software provides me with the support I need whether I am at home, at work or on the go.
While 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 to explore the wonders of assistive technology and book a trial now with an ethical, trusted and experienced national distributor for the ultimate benefit of their patients.
Diabetes UK’s view
Simon O’Neill, Director of Health Intelligence and Professional Liaison, says:
“Although great improvements have been made in screening for diabetic retinopathy, it is still the leading preventable cause of blindness in people of working age. While better treatments are being developed for the condition, for those who have already lost some or all of their vision, help is needed and technology may well prove to be the answer to enable those people to continue to live full and productive lives. Healthcare professionals can’t know everything, so resources like VisionBridge may help to link people with diabetes to the tools and technologies that best meet their individual needs.”