"Type 1 Diabetic - Access to care and technology"

For a number of years, I have highly educated myself on my illness through linking in with the community, charities, research and various online courses. Since my diagnosis several years ago I have never been advised or encouraged to have an insulin pump despite never really having great control of my sugar levels (not with the lack of trying). I have asked for it on multiple occasions, the last time being pre-covid when the consultant who is now retired was disrespectful and I suspect has written inaccurate records on my NHS notes. I wish now I had complained about them.

I am in the process now of asking for all of my records and have contacted my local MSP to highlight concerns.

I have not seen a consultant since pre-covid and the wait list continues to grow. Having self-funded the Libre CGM (Continuous Glucose Monitor) for years I was happy they eventually agreed to fund it! Thank you!

I recently contacted the diabetes clinic to inquire about the pump, but I was told that the waiting list is over a year, that it will be some time before I can see a consultant and approximately 2 months to even see a nurse. Despite my GP making a referral early 2024, which was never acknowledged and then a recent hospital admission for DKA, plus not seeing any consultant or nurse for many years I continue to be in a position where the care and treatment I need is just simply not available at this current time.

I work for the NHS and my sickness rate has rocketed over the past year. I don’t want to be off work and will do anything to improve my health and wellbeing, hence the use of private therapists, self-funding equipment and now starting the process for a self-funded insulin pump.

It's a bit frustrating to know that the technology is available to others. I understand that the clinic prioritises certain people like pregnant women, over me because they consider my diabetes to be managed reasonably well, however, it has never been managed well since my diagnosis. I went to a therapist and identified a longstanding psychological fear of hypoglycaemia, however not one clinician has ever asked me about this during any consultations. I was unaware until this was explored with a private professional.

I believe that the pump, specifically a closed-loop system, would make a significant difference for me, especially in controlling my blood sugar levels overnight but I have no hope that this will be considered anytime soon. A few of the other diabetics in the community have offered me their old pumps, (thousands of pounds worth) which they were advised to dispose of when they were changing pump. It would be illegal to do this as I would need a prescriber and training and necessary support.

I've inquired about self-funding the pump, but I haven't received a response regarding whether it would remove me from the waiting list or any other support available. I'm just hoping for some clarity on that front. The cost of the pump and related expenses, such as continuous glucose monitoring (CGM), add up to thousands of pounds, and hundreds monthly thereafter at a minimal, which is a significant financial commitment.

Despite the potential expenses, I believe that the benefits of these technologies outweigh the costs. With my hard work and determination and this technology I would greatly improve my quality of life with diabetes.

Diabetes tech isn’t a luxury. For some, it’s vital.