Diabetes tech: Do national aspirations and local practice align?

Summary

In this anonymous blog, a person with type 1 diabetes describes their recent experience upgrading their insulin pump, a medical device used to continuously deliver insulin instead of taking multiple daily injections. They describe how communication issues and gaps in staff knowledge led to a significant delay in accessing the pump, which caused them significant stress. They also ask whether recent announcements about increased access to diabetes technology over the next few years will match up to the reality experienced by people with diabetes accessing care at local healthcare organisations.

Content

In December 2023, NICE approved the roll out of hybrid closed loop systems to all patients with type 1 diabetes, which will make a big difference to both life-impact and clinical outcomes for thousands of adults and children in England. The announcement was a big deal, making mainstream news and lighting up social media.

Looking behind the headlines, it will take up to five years to see technology reach everyone who is eligible, as NICE has stated. However, I’m dubious as to whether that target is achievable, because with all the will—and even all the funding—in the world, we need to have enough staff with the right training to make it happen. Diabetes teams need clinical training related to each system, but they also need to know how to run the process of getting this tech from factory to patient, with all the right forms signed and permissions given. They will be dealing with much larger volumes of requests, authorisations and administrative tasks on a daily basis.

I recently had a brush with the administrative burden of upgrading my tech, and it somewhat highlighted this gap between the promise and the reality. I’ve been fortunate enough to be on an insulin pump for over a decade. Last December, with my current pump coming to the end of its life, I had the opportunity to choose a new one that I could use alongside my current continuous glucose monitor (CGM) to make a hybrid closed loop system. It felt like a weight had been lifted—in a few weeks, I would have access to a system that promised to make life a bit easier.

Fast forward six months, and there’s a different story to tell. I was finally trained and ‘plugged in’ to my new pump last week. Unfortunately, I found myself in a marathon effort to try and access the new device. There were extended delays in getting approval, ordering the pump and booking a training session. My old pump crept out of warranty and became increasingly unreliable, and my stress levels crept up as I tried to figure out why things weren’t progressing. I left so many voice messages and emails to try and establish what was going on, but I often received no reply or call back.

I’m still not fully clear on why it all took so long, but I have picked up that the delay was due to a combination of staffing issues, missed emails and lack of familiarity with the tech company's systems. At the beginning of the process, I had been told it would take a few weeks.

I don’t want to lay all the blame on the team that runs the service, where I know there are capacity issues. But the experience revealed holes in the system that prevent patients accessing support and treatment that has been agreed. I was bolshy and desperate enough to push things through, and ended up contacting the company directly to see if they could help, which they did. It was me, as the patient, who pieced together where communication had gone wrong and highlighted what needed to happen. I know the health system pretty well and will keep asking until I find the person who can answer my question. My fear is that many people don’t know where to start, or where to go next when they meet a wall of silence. 

Friends sometimes forward me articles about how people with diabetes will soon all have access to the latest tech, but the headlines usually fail to convey the reality. ‘Soon’ and ‘all’ are subjective terms, depending on the systems that exist within your local organisation. While I believe the national team is putting significant effort into addressing access inequalities and postcode lotteries, there is still so much to do to ensure that patients receive the care they are entitled to and maintain their trust in their healthcare team. 

I hope that the promise will become a reality sooner rather than later, and that people with diabetes don’t face an uphill struggle to access the help they have been told to expect. The commitment from NHS England to the goal of universal access to closed-loop technology should rightly be celebrated. But the missing link between national policy, local practice and, vitally, how these are communicated to patients, needs some attention. As it stands, it is a recipe for frustration and anxiety.