How do YOU feel?

The meeting of the All-Party Parliamentary Group for Diabetes on 19th July 2018 will consider “6 months of Flash Glucose Monitoring: What’s next for access to technology?” My hope is that CGM will be recognised as an equally valuable tool for patients with T1D and the process will be started to make it available on prescription.

How do we currently manage the majority of patients with T1D? The testing of blood glucose levels is recommended to determine whether past behaviour and dosing decisions have been appropriate. This should then inform future dosing decisions. It is recognised that the self-monitoring of blood glucose (SMBG) has many limitations. A measurement gives you a value for a single point in time. There is no indication of the direction or rate of change in value. That is the weakness with this approach - it can only allow a patient to base future management on limited historic data which will be more prone to ‘error’.

Research over recent years into developing a closed loop system and the development of some of the newer insulin pumps that offer a low glucose suspend recognise the importance of being able to manage T1D in the ‘now’. Regardless of age and gender, regardless of how many days are spent testing insulin: carbohydrate ratios and insulin sensitivity factors, no two days are ever the same and continuing to expect patients to manage based on historical data rather than trying to act based on easy access to current real time data will always result in greater blood glucose variability and the constant need to play catch up.

So if I want the benefits of technology regarding blood glucose management, why do I not want to jump on the bandwagon and ask my GP to prescribe flash? I have tried using it. I have tried to love it. It just does not go far enough in enabling me to manage my T1D in a way that works for me. I feel that flash represents a half way house. Each scan provides readings for the last eight hours. There is nothing stopping you scanning as frequently as you wish but the technology as sold, provides no continual update of real time data and no ability to alarm patients to readings exceeding pre-set upper or lower limits. As a child diagnosed in the early 1970s I experienced a number of very frightening night-time hypos, which led to convulsions. Any device that can alarm me of impending blood glucose drops to avoid the likelihood of overnight hypos these days will always get my vote. Equally importantly, to be able to send CGM readings to a watch face to glance at frequently during the day, allows me to micro manage falls or rises in blood glucose levels, before they become significant. There is no ability to calibrate flash with a finger stick reading and I find when I have tried wearing flash and comparing the results with SMBG and my CGM, flash can read up to 2mmol/l different whereas CGM tracks the trends far more accurately. It is not a technology that gives me sufficient confidence or ease of use for making decisions on managing my T1.

My understanding is that CGM is currently funded for a very small number of PWD, largely due to hypo unawareness and the recognition of the dangers this can cause in managing daily life. I recognise the importance of this for people meeting this criteria and I am grateful that I do have hypo awareness. However, as a person wanting the best possible quality of life whilst managing a chronic medical condition, even with hypo awareness, I would argue that by the time you are experiencing symptoms, your quality of life is affected.

There has been much discussion of hypo thresholds recently. Given that the bottom end of a normal blood glucose range is quoted as 3.5mmol/l, do we always expect T1Ds to have symptoms in the 3.5-3.9mmol/l range, when this is deemed normal? I am aware of various non-T1Ds that have worn flash monitors to help identify the range of readings that a non-diabetic might experience. They have shown readings in the mid 3s and as low as 2.8mmol/l overnight (albeit after alcohol consumption). Do they have symptoms? Is it the absolute value of a blood glucose reading or the rate of drop that causes the feelings of hypoglycaemia in T1s and can we always be expected to recognise these without the added benefit of technology? 

I do feel hypo warning signs but not always in the situations that HCPs might expect. For me, it tends to be the rate of decrease in blood glucose values that causes symptoms. I have experienced CGM readings in the high 6s and have started to feel lowish with sustained blood glucose drops of say 0.3mmol/l every 5 minutes but the feelings will disappear if my blood glucose stabilises in the high 4s or low 5s. I can have a period of several hours where I seem to be hovering around the 3.8-3.9mmol/l mark and not feel hypo if I stay at that level with no significant movement up or down. Without the use of CGM, I would arguably miss some values that should be acted upon for safety reasons and potentially over treat others that could either be ignored or nudged very slightly upwards.  Would that matter? Yes! As a person living with the condition, even if you catch and treat all hypos because you experience symptoms, by the time you are feeling the real symptoms, it is having an impact on your quality of life, your ability to perform your job, your desire to want to interact with friends, family and life in general. And these feelings can last for a period of time after the blood glucose returns to normal – the dreaded hypo hangover! Many HCPs are recognising the benefits of time in range as opposed to other measures to assess management of the condition, as more data becomes available from patients using CGM. And over the last four years of using self-funded CGM and the better I get at increasing my time in range, the better I feel physically. I am sure that many in the T1 community will agree but blood glucose excursions out of range have a huge impact on energy levels. I feel very frustrated if I have days where I have to manage like this, if I have days where I have to grit my teeth to get through, when the technology is already available to help minimise my need to cope in this way.

CGM is not a magic pill and maybe that is part of the reluctance to add it to prescription lists. It takes time to master and know best how to react to the data. It does not suit everyone and has been accused of leading to data overload or alarm fatigue. But for those of us able and willing to act as our own cranial pancreas, it would be fabulous for policy makers to recognise its value and allow the NHS to prescribe it to those both willing and able to reap the benefits from its use.