There is no doubt that diabetic retinopathy (DR) continues to be a clear and present danger. However, the position of DR in the global league table in descending order of eye diseases that impact most in high income countries can be misconstrued, coming last as it does after uncorrected refractive error and cataracts taking pole position.
The statistics around diabetes and DR are sobering. They point to well over 5m diabetic patients in the UK by 2030, the increasing prevalence of DR amongst the under 40’s, the heightened likelihood of contracting DR and related eye diseases as a result of diabetes and the mushrooming cases of obesity which is a major risk factor in contracting diabetes Type 2.
So how can assistive technology help this situation? My plea is that in the justified 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 lost.
To put this into context, in 2010, I lost my 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 symptoms of which 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 and it took me some time to discover 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.
In the face of so much scientific progress, the usual obstacles to maintaining a chosen livelihood and lifestyle, experiencing travel and leisure and indeed employment will continue to dissipate. However, all this progress is being made in the context of a growing number of diabetic patients in the UK let alone worldwide and it is worth reflecting on the impact that diabetes might have on sight alongside other symptoms of say kidney failure, circulatory problems and heart disease.
Despite this frenzied 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 lv aids and advice regarding lighting and using apps on tablets or mobile phones are available free of charge. Patients may or may not 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 the clinic. It depends on the budget and protocol of the NHS clinic as to who can be referred, how many aids can be supplied etc. 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 have and many are confused by the referral pathway around the voluntary sector, patient support groups and suppliers.
Eye Health Professionals’ training is extremely variable (e.g. 1 day course, 5 month masters course, specialist degree) and they complain of the speed of evolution of technology which they can miss. They rely on Eye Care Liaison Officers (ECLO’s) to distribute information and signpost patients but are not clear about ECLOs’ level of training. They rely on local charities and refer to google and twitter for technology and patient experience updates.
There is an over reliance on the charity sector where the quality of advice is patchy and the on-hands training of patients on devices (as opposed to just offering advice) is inconsistent. there is also a widespread resistance amongst eye health professionals to “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 stakeholders in eyecare complement each other, if at all, along the patient pathway.
All of the pointers above relating to patients and eye health professionals in primary and secondary care can be seen as roadblocks to optimal patient outcomes including 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 indeed 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. 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 the 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 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.
VisionBridge and Sight and Sound Technology are applying the same educational principle to eye health and other healthcare professionals. We recognise just how confused they are by the multiple approaches from distributors but keen to improve patient footfall and retention and identify new revenue streams. They are acutely aware of their widening gaps in their knowledge about technologies, frustrated by the 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.
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.
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 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!
Founder and Director – VisionBridge