SCONe

Malcolm's Story

Professor Malcolm Atkinson is a computer scientist at The University of Edinburgh School of Informatics who directly experienced the benefits of early diagnosis of AMD.

malcom
Professor Malcolm Atkinson, The University of Edinburgh, School of Informatics, June 2020

My age-related macular degeneration (AMD): a good story because...

 

Lindsay the optician asked me to cover my left eye. I said “Why have the lines gone wiggly?” This led to a quick referral to the eye pavilion where her suspicion of AMD was confirmed. I was shocked and worried, as I knew people whose sight had rapidly deteriorated. But I was very lucky to have the right kind of AMD, living in the right place (close to an expert team) and at the right time, digital imaging and injections offered an effective treatment. I’m delighted to say that due to their care, my right eye is better now than it was on the first visit to the AMD clinic eleven years ago.

My good fortune is not universal. Most people don’t live close to well-equipped expert ophthalmology teams. The effectiveness of the treatment increases the demand for it. High resolution digital imaging of eyes is now widely available. I revisit my AMD journey and try to understand how best to sustain such good fortune nationally and globally.

I was about to walk the south west coastal path, a wonderful thousand kilometres and had six weeks of B&B bookings set up, when I was first diagnosed, so the Princess Alexandra Eye Pavilion arranged to see me as soon as I returned. The first example of their sustained helpfulness.

There a consultation with direct and digital observation confirmed that I had wet AMD, and three injections were scheduled before the next consultation. The first time I had too much blepharitis and had to go away and come back for a new appointment. A kind nurse pointed me in the direction of Blepharsol, and so far it has worked 77 times! 

I was scared of the injection. I’m happy to report that I have never felt it, though I still find it hard to relax. I’ve only had a painful eye afterwards on a couple of occasions, and never since I took their advice of resting afterwards (I used to rush back to work - my office was 8 minutes walk away). The procedure has always been reassuring, with the team taking great care and working impressively well together. There have been significant changes over the years.

The procedures have been streamlined and simplified. The injection has switched from Lucentis (developed initially to suppress vasculation in tumors) to Eylea. The numbers have gone up and up as we keep coming back because the treatment works. Digital tomography of the eye is faster, less demanding, networked and with higher resolution. The teams performing the injection have changed. They used to be clinician led, now they are nurse led. These nurses are amazing in their skill and patient interaction. I cannot find words to praise and thank them enough. They have made it possible to meet the growing demand. Even in the Covid-19 era they have given me two injections as efficiently and as caringly as ever.

After three injections, currently for me six weeks apart, I have a consultation with a clinician. I always try to arrange that it is Dr Armbrecht, as she has taken a very deep interest in my case and carefully explored variations in my treatment regime. I trust her experience and judgement completely. We almost always agree on three more injections at six week intervals. These days, the first is on the same visit to the eye pavilion. We have tried increasing the interval but that leads to deterioration in my eye. She tells me that some people’s eyes dry up and they no longer need recurrent injections. I’m happy to keep going with injections to keep my good sight, but I realise this has a significant cost in NHS resources that will grow as more of us keep coming back.

I was incredibly lucky:

  • To develop wet AMD at a time when an effective treatment had become available.
  • To be spotted early by my optician and referred immediately.
  • To have a leading clinical AMD research team right next door.

How can we develop an approach so that everyone in Scotland, even in the remotest parts, has the same benefits? Can we export the approach to less-well resourced communities? Can we pursue research to find less costly ways of dealing with people like me?

As a computer scientist I am very proud of the advances in networks (keeping society going as we work from home) and digital imaging, though I have to admit that engineers and materials scientists have also made this possible. This means that the consulting experts and decision makers can observe eyes remotely. Did the Scottish government equip every ophthalmology practice with a suitable camera with this in mind? Can an ophthalmoscope and a smartphone work for this in less well resourced countries? Can we mine from the abundant collection of optical images parameters for automated triage systems and patterns that lead to better understanding and treatment of AMD? As a non-medic, but a well-looked after patient, it seems to me quite possible to make substantial advances with wide benefits.

Professor Malcolm Atkinson, June 2020