Delays in accessing continuous glucose monitoring in people with type 1 diabetes

Continuous glucose monitoring has been shown to improve the management of diabetes, as well as quality of life. Despite the publication of the NICE guidance earlier this year (NICE, 2022a; NICE 2022b), which recommends full NHS access to intermittently scanned continuous glucose monitoring (isCGM) and real-time continuous glucose monitoring (rtCGM) for people living with type 1 diabetes, many centres today have still not got their processes in place to improve access to this technology. 

This has been further delayed by the formation of 42 integrated care boards (ICBs) in July 2022. Integrated care systems (ICSs) are partnerships of NHS bodies and local authorities, working with other relevant local organisations, that come together to plan and deliver joined up health and care services to improve the lives of people in their area. As a result of ICS formation, clinical commissioning groups (CCGs) were closed down in July 2022. Each ICS has an ICB, which is a statutory NHS organisation responsible for developing a plan in collaboration with NHS trusts/foundation trusts and other system partners for meeting the health needs of the population, managing the NHS budget and arranging for the provision of health services in the defined area.

We are hearing many accounts that children and young people who would have been funded rtCGM previously by CCGs via Individual Funding Requests (IFRs), are now being denied the IFRs by ICBs until IFRs are revised or abolished, and/or NICE is reviewed and considered.

Some ICBs are also using the previously held CGM policy with stringent criteria to still deny CGM access to children and young people with type 1 diabetes. It is important to note that NICE has published clear guidance on CGM access and there has been no criteria set to access CGM for any person living with type 1 diabetes. The current NICE guidance (2022a) states that all children and young people with type 1 diabetes should be offered rtCGM, alongside education to support the young people and their families. The guidance also says that we should offer isCGM to children and young people with type 1 diabetes aged 4 years and over who are unable to use rtCGM or who express a clear preference for isCGM. The guidance also advices that children and young people with type 1 diabetes should be offered a choice of rtCGM device, based on their individual preferences, needs, characteristics, and the functionality of the devices available (NICE, 2022a). 

Regional variations in access to rtCGM and isCGM for children and young people in England and Wales were previously reported in a national survey undertaken by the Association of Children’s Diabetes Clinicians (ACDC) in 2019 (Ferguson et al, 2020). This included variation in prescribing practice and access to CCG funding both within and between regions. 

NICE remains an important part of the Government’s agenda for delivery of high-quality patient care (Ng, 2021) and it would be advisable for those in national roles, local ICB diabetes leads, regional diabetes leads and clinical teams to start discussions within their ICBs and local trusts to quickly improve their processes for implementing funding pathways, and advocate for patients to have access to CGM in accordance with the NICE guidance.