Anthony's story: lack of support led to my eye complications

I was diagnosed with type 1 diabetes when I was 10, just over 30 years ago.  

I recall when I was first diagnosed there was a fantastic nurse who made house visits and was very supportive and she helped me get into a routine with my diabetes and how to manage it. Now it feels as if there’s none of that care and no one has a proper understanding of my diabetes as they should have.

My treatment programme is a combination of insulin and a healthy diet. I don’t have a pump but got a Libre about 4 years ago, to monitor my sugar levels without having to prick my fingers, which has been a game changer for me. My care over the years had been standard with a yearly check-up assessment with a consultant at my local Hospital and also seeing the diabetes nurse at my GP surgery.  

Cancelled appointments during the pandemic

However, back in January 2020 I was due a check-up, but the appointment was cancelled and moved to March for a telephone appointment and then it was cancelled and moved to May, which also got cancelled too and I didn’t receive any further communication about appointments after that.

So I chased it up myself and late last year was told that I had fallen off the system, they did apologise but there wasn’t any plan to contact me. Within about four weeks of that I had a very short phone appointment, which was basically checking how I was getting on and that was it.

The challenge for me was turning 40 during the pandemic, a very pivotal time in my life– and also when I started experiencing the effects of living with type 1 diabetes for over thirty years.  Problems with my eyes were highlighted prior to that period but without monitoring and proper management, things just got worse and led to my eye complications.’    

I do believe the lack of contact and support resulted in me developing retinopathy as I didn’t have an eye appointment for two years. During the pandemic was a very challenging period for people with diabetes and not having that external assessment and not being monitored properly really impacted on me and no plans were in place should I develop any complications. It was known that I had high blood pressure and I was approaching my early 40’s so important conversations and future planning just didn’t happen.

Prior to the pandemic, I had constant monitoring of my eyes for about 7 or 8 years as there were some concerning little blood vessels behind the eyes. I had laser surgery about 7 years ago but as the checks on my eyes weren’t maintained and I didn’t get treatment in time this resulted in a burst blood vessel behind my right eye last year summer whilst I was away camping with my seven-year-old. Now I have a permanent distraction in my eye, a leak in my eye and I had some laser surgery which seems to make it better for a short while and then it comes back.

The blood vessel bursting in my eye was directly related to my diabetes as concerns had been raised previously about eyes. At that time I was having 6 monthly eye check-ups which weren’t maintained during the pandemic and so the opportunity to do something at an earlier stage was missed.

So late last year in November after chasing things up, I was put back onto the system and I was literally given a catch-up telephone call for less than 10 minutes and told I would be put back on the yearly review. They just wanted to know what the figures were from my Libre and it was just a very general overview. My next appointment is scheduled for July.

The response from the consultant to my burst blood vessel in June was pretty casual, as if to say that sort of complication can happen when you have diabetes, the appointment felt like a check list and really basic. At the time I didn’t raise my frustration about developing retinopathy as I know the NHS was going through tough times.

Impact of retinopathy

The retinopathy has impaired my sight and also affected my health. I’ve not been as active as usually and when I try to be active it makes matters worse. So since last June, I’ve put on a bit of weight and my health has suffered. Lots of things have happened as a consequence of my condition. The consultant also suggested that I follow-up with my GP. and to do my feet assessment and blood tests. But my GP surgery hasn’t been that proactive with my care and they’ve usually left it to me to make the appointments for my blood tests.

The response to my current condition was that it’s a consequence of having diabetes. However, my bloods have been very good over a period of time so they seemed pretty baffled and put it down to my age and having diabetes for over 30 odd years.

I’ve never been offered an insulin pump or been presented with better management tools. I have a Libre, a continuous glucose monitor, which I initially self-funded for about 6 months. I was invited to participate in early day trials and realising the benefits I convinced my GP to provide it via the NHS.  But It wasn’t a straight forward process, as I had to put forward a strong case and my initial application was turned down. Then fortunately taking into consideration all my travelling for work and having a young son I was successful in getting the Libre as they saw it was beneficial in managing my diabetes.
   
I’ve got a friend who was recently diagnosed so I know there are new types of medication and technology which will help with managing my diabetes but none of that has been offered to me and I’m still on the same insulin treatment from about 20 years ago. I’m not sure how a pump would benefit me as its never been discussed at any of my consultations to date."  

Participation in activities

"Not being fully active is challenging. I used to enjoy regular long cycle rides with my son after school and during the weekend, however nowadays I’m much more hesitant to do that and I’ve also stopped playing competitive football."

There’s no hiding from the fact that the two bleeds I previously experienced were whilst out doing activities and so I’m naturally very cautious. This situation has made me anxious about going for a run or cycle ride and just generally being too active as I don’t want to have another bleed.

This has also had a negative impact on my physical health with some weight gain and has also impacted my mental health as I used to be so much more active before I started experiencing challenges with my eyes.

Being able to continue with these activities is so important to me. I’ve been involved with football for over 35 years and was keen to continue my relationship with this sport for a few more years. I wanted to be the one who made the decision of when to slow down which has now been taken out of my hands. It's an uncomfortable experience to continually have the thought that another eye bleed could easily occur if I were to overexert myself. 

What should happen

Diabetes is a complex condition and the repercussions over time are very serious and as I have found life altering so I don’t feel a consultant can examine someone with a checklist over the phone whereby you’re asked a serious of questions and if your response is favourable then that’s all fine. There needs to be a commitment to managing my condition properly.

Over the last 10 years I’ve been left to manage my diabetes and with diabetes you go through stages where your insulin and treatment may need to be changed when your body can become resistant to the insulin, so you may need to try something else. In my case over the last five years I’ve had high blood sugar in the mornings and so that means sleepless nights and having to give myself insulin through the night.

I brought this situation up with my consultant and yet there was no follow-up or advice on what to do. So 5 nights out of seven I’m waking up once or twice during the night to give myself insulin so that I don’t wake in the morning with a high blood sugar level. 

Having regular eye appointments and better monitoring of my eyes to pick up any complications should have happened sooner. Earlier laser eye surgery would have possibly prevented the bleeds I experienced which is why we have our yearly check-ups to monitor and prevent.

Since my initial diagnosis, I’ve not experienced any challenges with my mental health, however since the recent complications with my eyes, I’ve started to feel the weight of having diabetes on my shoulders, especially when the side effects started to have a negative impact on my quality of life. As a result, last year I reached out to my GP to request some support which resulted in me having a few telephone conversations with a mental health charity. The decline in my mental health also initiated me to reach out to a support group for diabetes called The Diabetes Football Community (TDFC) and so access to a community who can relate to the day-to-day challenges faced living with type 1 diabetes. The group provides me with much information and support. 

Looking ahead 

Now in my mid-40’s I’m still unsure about what the future holds in terms of whether I will have further complications with my eyes. I’m aware there are still changes happening in my eyes which have not been rectified and I’ve now been taken off my regular eye appointments, the 6 monthly check-up.

I’m disappointed about not having the more regular eye appointments because they were in place to scan and monitor any ongoing problems with my eyes and I’ve still got spots in my eyes, which is concerning and an uncertainty for me.

My GP surgery is great for most things and they do organise all the yearly checks that I need for my diabetes. However, I do have an air of caution about the level of care the NHS can offer me with my diabetes in the future. All consultations for my diabetes are still over the phone and I believe the level of review that you can achieve over the phone is very limited, especially with concerns around my eyes. The information they seem to be looking at are results from my Libre which gives a basic overview of my diabetes, but I feel that’s very one dimensional and doesn’t give the full picture.

At the moment I’m looking after my diet and exercise in the hope of preventing any future  complications with my diabetes but I still feel you need that external support and monitoring and as time goes by I’m not convinced that ongoing support will be available in the future which is disappointing to say and so my quality of life and mental health has been affected by this situation.