I first met Bernadette Warren when she volunteered to act as a patient for a visual impairment course run at City University over the summer. It was immediately apparent that she was born to this role, and was able to explain her visual aids and the other ways she copes with her sight loss in a way that offered all the course delegates a clear and understandable snapshot of how she lives her life. It soon became apparent that Bernie had a wealth of experience in this and was an old hand at talking at events. She had even taken part in a local radio phone-in talking about the latest developments in diabetes glucose monitoring and control. It was this that particularly interested me, so I was pleased when Bernie agreed to a short interview to find out more about her use of technology.
Are you able to give a brief outline of your diabetic history?
Bernadette Warren ‘I was diagnosed with diabetes in 1996 when expecting my first child. In 2011 it was confirmed that I had type 1 diabetes. Interestingly, I have an identical twin sister and she does not have diabetes.’
What has been the visual impact of your diabetes?
BW ‘My vision started to be really affected in 2011, and has continued to deteriorate ever since. I now have issues with reading, contrast, recognising faces and colours, and generally have difficulties getting about in low light. I gave up driving in 2013 and had to give up my teaching job in 2012. I was registered as sight impaired in February 2016.
The details of Bernie’s ophthalmological management are summarised here:
- 2008 to 2010 – successive laser photocoagulation, both focal and diffuse, for proliferative retinopathy.
- 2011 – anti-VEGF injections in both eyes begin to treat clinically significant diabetic macular oedema. To date, Bernie has had, in the right eye, 22 Avastin and 25 Eylea injections and treatment is ongoing. For the left eye, she has had 20 injections of Avastin, and from April 2013, six Lucentis injections which were then stopped due to ischaemia and no further treatment for the left eye followed.
- January 2016 – ocular hypertension was first diagnosed.
- 2013 – a decompensating exophoria, secondary to reduced vision in the left eye, was detected. This resulted in a V pattern which caused diplopia.
- 2015 – a Fresnel prism (8 dioptres) was introduced to control the diplopia and, in 2016, this was incorporated in glasses.
- 2018 – a further 8 prism dioptre Fresnel was added on top of the incorporated prism.
- Posterior subcapsular cataracts were diagnosed, coincident with a narrowing of the anterior angles, and Bernie is currently under review for future cataract extraction. The angle narrowing is thought to be phacomorphic.
- Ptosis of the left eye, worsening with fatigue, has been observed for two years now but a recent test for myasthenia gravis proved negative. The ptosis has become worse in the past few months.
Can you remind me of the low vision aids you use?
Bernie has high myopia, which offers a reasonable near magnification unaided at the myopic near point and also complements the magnification offered by a Keplerian telescopic system for distance viewing. The aids currently in use are as follows:
- Hand held monocular telescope – ‘useful at concerts’.
- Eschenbach 4x hand held illuminated easy pocket magnifier – supports reading of smaller text.
- Anti-glare wrap around glasses.
- Symbol cane – so all around are aware that Bernie has some visual impairment.
- iPhone.
Figure 1: ‘This shows my Fitbit alarming me of a hypo. It vibrates enough to wake me. It is also set to 15 as my high. I can set the limit and the vibration function’
How do you use your iPhone?
Bernie has made the most of the accessibility options available on most modern smartphones as well as using a variety of downloadable apps. These adaptations include;
- A ‘triple click’ on the home screen opens the camera and allows, through a zoom slide, the phone to be used as a magnifier
- The torch is easily switched on from the home page to offer bright task lighting whenever required on home page
- A variety of apps, including a Tube map, a bus checker, a TV guide and the apps Spike and Nightscout. ‘I can track my diabetes blood sugar results using Spike and Nightscout.’ The last two apps are explained later.
Figure 2: This shows the watch face with my blood glucose in the top right-hand corner. The green tick means there is a good connection and the minutes shows how long ago data was sent to the watch (there is a maximum of 5 minutes). The line with the ball on the end (under the minutes) is what direction my level is going (the trend), and the squiggly line is the last 2 hours of readings. This interface is also available on an Apple Watch and other smart watches
Tell me about blood glucose monitoring
BW ‘I still need to prick my finger regularly. This still needs to be done as it links to the pump I wear, but this only gives a measurement of what the sugar level is at that instant. The equipment I have includes a finger pricker, test strips and a hand-held device. Finger prick testing depends on good sight, so as to be able to do the following tasks:
- Find the finger pricking device – ‘it is black and difficult to find’.
- See that there is enough blood for the strip – ‘it is difficult to check if blood drop is big enough’.
- Change the needle safely – ‘they can be very fiddly and sharp’.
- Insert the test strip into the tiny hole in the meter – ‘pretty obvious this is difficult, black meter and tiny black hole’.
- Dispose of the test strip properly – ‘used strips should be put in a bin somewhere, so I have to locate a suitable bin’.
Can you explain the Libre system?
BW ‘I started using the Freestyle Libre in 2017, when it was offered as part of a trial at my hospital. I was given the Abbott Freestyle Libre Reader and one sensor for free. Since then, I have had to pay for my sensors. The sensors only last two weeks and can cost anything from £40 to £50 depending upon where you buy them from. Some patients can be prescribed them, but my Clinical Commissioning Group does not offer that at present.’
‘The Freestyle Libre is a great tool and means less finger pricking. It is known as a flash glucose monitor system (FGM), and is what I would describe as the first step towards a CGM (continuous glucose monitor). The Libre reader works by scanning the sensor (which is usually fitted to the upper arm) using the same near field communication (NFC) technology as an Oyster card as used on the London Tube. Using an app on your phone or the Libre reader, you can see trends of your levels over the last eight hours, and even longer as long as you swipe it every eight hours. This is the system Theresa May was seen wearing recently when as she received Donald Trump at Blenheim Palace. It is easy to insert and quick to use.’
Can you give a brief explanation of the link with your smart watch?
BW ‘Theresa May was shown using just the Freestyle Libre as a stand-alone flash glucose monitor. However, advanced users of the technology have embraced the addition of an NFC to Bluetooth transmitter for the Freestyle Libre system. This exciting addition removes the need for constant swiping of the sensor with the reader, and changes the Freestyle Libre into a fully operational CGM which can show data in a graphical format. This is not only for a smartphone, but a smart watch too, such as the Fitbit Versa or ionic or the Apple Watch (see figures 1 and 2).’
‘In order to do this, you need to purchase a reusable NFC to Bluetooth transmitter, such as the MiaoMiao (https://miaomiao.cool) which you physically attach to the Freestyle Libre. The MiaoMiao reads the data from the Freestyle Libre sensor and automatically downloads the results every five minutes onto a beta app. There’s no swiping involved!’
‘Useful apps available include Spike for the iPhone and xDrip+ for Android phones. What is so great about this type of app is that it can be set up to sound an audible alarm when your levels are too high or too low on your device. This takes the guess work out of monitoring your levels which, with my sight impairment, has been invaluable for me. Getting the system set up does not need any clinician involvement at all and, in truth, not much understanding of technology. If help is needed, there are dedicated Facebook groups purely to help people to get started. These have been a great help.’
‘Many clinicians know about the Freestyle Libre, but are unaware of the advantages of the addition of the MiaoMiao. It makes the Freestyle Libre even more useful, and transforms it into a full CGM, similar to that on the market from Dexcom CGM but less expensive.’
‘Fitbit and Apple now permit developers to design and publish watch face apps too. The app I use is called “Glance” and is a watch face created by Ryan Mason. It is now used by many with the Freestyle Libre and MiaoMiao set up. It has helped me countless times. Recently all my diabetes testing equipment was stolen. This included my Freestyle Libre reader and blood tester. Normally this would mean I would have no way of knowing what my sugar levels were, but having the MiaoMiao, Spike on my iPhone, and my Fitbit with Glance app meant I was still able to keep an eye on my levels until I could get a new blood tester and reader.’
Does the data sent to a watch also go to your iPhone?
BW ‘There is a dedicated app that can be used alongside the Freestyle Libre. It is called Freestyle LibreLink. However, this app is only available in some countries, to those using certain models of Android phone, or an iPhone 7 or above. The app acts in the same way as the Libre Reader, and offers no warning alarms or other the advanced features that using a MiaoMiao and a third party app offer. On the other hand, the Spike app and xDrip+ app (which can be used in a large number of countries and in a variety of languages) can be set to have alarms for a variety of situations, such as glucose too high or too low. It can also be set up to speak blood glucose readings out loud which is particularly useful.’
‘The data from Spike and xDrip+ can also be set to upload real time data to a personal database called Nightscout. Nightscout is sometimes referred to as “CGM in the cloud”. It is a server that securely holds blood sugar readings externally to my phone, and can be accessed through any web browser. It enables significant others to track a diabetic’s sugar levels in real time, so particularly useful for parents of diabetic children at school, or when they’re asleep at night in another bedroom. Nightscout also has a massive array of built in reports and analyses. This enables me to print out a variety of records showing my results and trends which I can show to my diabetic specialist nurse and consultant. Unlike some charts, this has good contrast and is easy to read for those with sight loss.
To finish
‘With my diabetes tech, I have been able to reduce my Hba1c from 10 to 6.5. This is the best it has been in 22 years. In fact, it has never been below 7 previously. The Freestyle Libre, MiaoMaio and Spike app have changed my life. Before using this app on my phone and watch, my diabetes was not well controlled — although I did try my best.
More information can be found on the Nerdabetic YouTube channel and the MiaoMiao website (https://miaomiao.cool).