Kim
Getting technology to help manage my diabetes has been challenging and even though I have a t-slim pump, I’m having to self-fund the CGM (Continuous Glucose Monitor) which is used with the pump so it can work as a hybrid closed loop system, but I am unsure how long I can continue paying £150 a month for it.
Diagnosis
I was diagnosed with type 1 diabetes at the age of 19 over 30 years ago. I’ve never hidden the fact that I have diabetes and my dad also has type 1 diabetes. I work in a secondary school and will talk to just about anybody about diabetes because I feel we come up against such barriers whereby people don’t really understand the condition. I’ve even found that some people in the medical profession don’t really understand type 1 diabetes or the differences between types. They don’t understand how hard it is living with diabetes and how one mis-placed word or comment from them can really derail someone who is working so hard to manage their diabetes.
I’ve had five laser sessions in one eye because of retinopathy and four sessions in the other eye but at no time during that period do I recall being told about the possible side effects of laser treatment and that having laser sessions could have an impact on my vision. So now one of my pupils has become fixed and dilated and I’ve lost some of my sight because of the laser. My doctor was baffled by this outcome as complications like this are rare with laser treatment for retinopathy, but unfortunately this is what has happened to me.
Naturally I was quite disappointed by this, and it did come as quite a shock. I’ve also been told that the other eye is probably going the same way. I’m not blind and still have some vision but it has been a big adjustment for me as I need to be able to continue with my teaching.
So, what’s been happening is when I visit the optometrist, I’m being told, all you need to do is manage your blood sugar levels as you’re obviously not keeping them under control. And at the hospital, I’m being told the same thing. So hearing that, you’re made to feel that you’re not working hard enough to manage your diabetes, that its your fault and that its self-inflicted and you’ve done this to yourself.
Continuous Glucose Monitor
I’m currently self-funding a CGM (continuous glucose monitor) because I can’t get it on the NHS in my area. Yet I’m being told if I don’t keep my blood sugar levels to my targets, this will affect my vision and I’ll lose more sight, but I’m not getting the support I need to help me do that.
I’m paying £150 a month for the CGM which communicates with my insulin pump. Luckily at the moment I can just about afford it but I don’t know how long I can do that for. I didn’t receive any training on using the CGM and was told to look it up and find out about it for myself. I’m finding that the constant worry about costs is damaging my mental health.
And getting technology to help manage my diabetes has been challenging in general. I recall having to go to great lengths to prove why I should get the Libre on prescription and then there was a list of roughly fifty things I had to do to fit the criteria of requirements before I got my Libre. And its not just me, my Dad aged 80 also has type 1 diabetes, he lives in a different county to me, and wasn’t offered the Libre at all. I feel like the onus is always on me to keep up to date with everything and see what’s out there because otherwise its not being offered.
Appointments
Access to doctors’ appointments have not met my needs. I had a virtual diabetes check during the pandemic, over the phone and my last HbA1c had gone up slightly due to me being on steroids. It was 58 mmol/mol and I was told that’s not good enough and I need to get my levels down more, but I wasn’t offered any advice on how to do that. I requested a dietician appointment, and I got one and at that appointment I was told ‘you’re doing all the right things’ and so nothing else was suggested.
When I phone the hospital to speak to one of the diabetes nurses, they’re now so busy they aren’t able to answer the phone, but pick up messages, and if they can, they get back to me at some point. But I’ve found that when I need to speak to someone more immediately, I just can’t reach anyone, and the GP surgery isn’t able to offer any help either. Its just so difficult as you feel you’re out there doing it on your own.
Over the pandemic period contact with my GP surgery and the hospital was virtually non-existent and appointments/consultations were over the phone. Following the pandemic, contact with my GP surgery hasn’t improved, and you could be waiting for up to a week or more for a virtual appointment. And if its something serious like when my blood sugar levels are high then a week is just too long.
And the situations that can develop around getting my much-needed medication, like my repeat prescription for insulin make me so frustrated with the system which can make communication with healthcare staff more difficult. And it leaves you feeling that this is your condition, and you need to manage it and if it goes wrong its your own fault. Also not attending my annual review at the GP surgery, even though it wasn’t due yet, resulted in problems with my insulin prescription and I received an automated message telling me that I couldn’t get my insulin without a review. Things like that just make everything so much more difficult.
Being Proactive
I’m quite active on social media and I’m not alone as other people have also posted their comments of frustration and the lack of support.
Has my diabetes got worse? probably not, yes my blood sugar levels are up and down, but I’ve had to rely on myself to get them stable and find solutions to help live with my diabetes. If I wasn’t proactive about my diabetes management, then yes it would have had a detrimental effect. Self-management of my diabetes leaves me feeling like I have to become my own physician to keep myself well.
I’m not a newbie in dealing with diabetes as I’ve been living with my condition for some time now with a good understanding of diabetes related complications. I know enough to keep myself safe and alive. But I also would appreciate some support with that. I do believe the only way to improve things is to talk about it. Hopefully my story might help someone else find out more about their diabetes and also inform others.
