My greatest concern is being in a position where I can no longer manage my diabetes myself

I was diagnosed with type 1 diabetes in 1971 when I was 14. I was very thin, extremely thirsty and my hair was breaking off at the roots. I was diagnosed by a GP who tested my urine. After that appointment I waited for a week before I was admitted to hospital, which amazes me now, as I could have died.

At the hospital I was told by the doctor that I must learn as much as I could about my condition and take control of it myself. He was very clear that no doctor could control it for me as I was the one who would live with it. It was the best advice anyone could have given an anxious 14-year-old.

The revolution of T1D treatments and technology

I left hospital with the only tools available to artificially balance my blood sugar level. I had a glass and metal syringe that had to be boiled before each use, and I cannot remember how I sharpened the needles. I also had my own Clinitest kit that quickly smelled stale and scales for weighing any food I ate containing carbohydrate.

My diet was strictly controlled. I could have 160 grams of carbohydrate a day divided up between meals. Food was not labelled with its nutritional content in the 1970s in the way that it is now. I was always hungry.

Fast forward to the present day and I now have a hybrid closed loop system (HCL); an Omnipod5 connected to a Dexcom G6. Having a continuous glucose monitor (CGM) has perhaps made the biggest difference to my life and I would not want to part with the Dexcom. It is reliable and helps me to keep my blood sugar stable. I feel mentally and physically well because of it.

The challenges of daily life with T1D

There are a number of challenging things about having type 1. Perhaps the most challenging is that I never get a day off from thinking about it. It can take up a lot of my mental energy. It’s also quite lonely because it’s a hidden condition and people don’t really understand what it’s like to artificially manage your blood sugar level; I suspect most people never think about their pancreas at all.

Despite feeling lonely at times, I have finally recognised the importance of peer support. I have found it immensely helpful to join a support group of people with type 1 and type 2 diabetes who listen and laugh and share their experiences.

Staying in hospital with T1D

I have been in hospital twice to give birth, once in 1993 and again in 2000. On both occasions my diabetes care was integrated properly with obstetrics and my experience was positive.

My experience on surgical wards, on the other hand, has not been good. I was admitted to hospital in 1972 with peritonitis and the staff knew dangerously little about type 1. My mother had to intervene and insist that my insulin was given back to me so that I could manage my diabetes myself.

I was admitted again in 2018 for a hip replacement. I trusted the surgeons, but my insulin was taken off me when I returned to the ward.  The Charge Nurse announced that no-one was going to inject insulin willy-nilly on her ward and she locked all my kit away in a cupboard, including my blood testing monitor. I got it back by stealth and hid everything I needed in my washbag.

I found it alarming that my experience of diabetes management on a surgical ward in 2018 was no better than it had been in 1972.  I have since asked for the hospital’s policy on inpatient care for people with type 1, but I have not been sent anything useful.