Stop 'dead in bed syndrome' for Ashley, because he mattered

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The Issue

My 19 year old son was found dead last month and after battling several other issues and coming through he died of this. Why can't a monitor be made that will detect night time glucose levels and more importantly administer glucose or glucagon somehow to save these life's. My son was a beautiful boy, we are ripped apart by his death.

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Karen GatesPetition Starter
Media enquiries

The Decision Makers

Diabetes UK
Head of diabetes UK
Responded
“We were very sorry to hear of the death of Ashley from a severe night time hypo. It is devastating for family and friends involved, though mercifully a very rare occurrence. We absolutely agree that this is high priority area for research. Severe hypoglycaemia is a source of anxiety and concern for many people with diabetes. Around 20-25% of people with Type 1 diabetes experience severe hypoglycaemia, requiring the assistance of someone else, during waking hours. Often such hypos come on without any warning symptoms. Night time hypos are quite common, though nearly always not serious and the individual either wakes during the night, or may only suspect they have had a night time hypo if they wake with a low blood glucose level or a headache. However, severe hypoglycaemia at night can be dangerous and we know that many people with diabetes, and those who care for them, are very anxious about night time hypos. Parents often check repeatedly on their children overnight. Unfortunately there isn’t an easy solution to the problem. Continuous glucose monitors do already exist but most have not been developed and tested for the specific purpose of monitoring glucose levels during sleep. Some monitors are equipped with alarms that can wake people up if their glucose levels go too low. None of them are currently linked to a system to deliver glucose when glucose levels decrease. This is because glucose needs to be delivered into a large vein, so a system of this kind would require people to be connected to an intravenous drip every night. A device known as “HypoMon” was in field tests in the UK until very recently but was voluntarily withdrawn by the manufacturer this year because it was not performing as well as expected. Of course we want products like this to be available soon but it is really important that they work reliably before people living with diabetes put their trust in them. One way that continuous glucose monitoring systems are being tested at the moment is as part of a major global research effort to develop an “artificial pancreas”. The “artificial pancreas” combines a continuous glucose monitor with an insulin pump and wireless technology to make these devices talk to one another to regulate blood glucose levels. This is an area of research that Diabetes UK has invested in heavily. Specifically, we have provided £700,000 of funding for a research project in Cambridge that is testing whether the artificial pancreas can prevent overnight hypoglycaemia. Earlier this year we announced that for the first time a small group of patients had used a version of the artificial pancreas in their own homes overnight. If the blood glucose starts to drop in the night, the continuous monitor tells the insulin pump to stop giving any insulin for several hours. In this way, as the rapid acting insulin runs out quite quickly, the blood glucose levels have been shown to rise again. Obviously this would be an amazing breakthrough for many people who have problems with hypos overnight and we will continue to support excellent research projects, such as this, until we have a solution that works. Diabetes UK offers our sympathies to you and your family in the loss of your lovely boy. Yours sincerely Barbara Young Chief Executive”

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Petition created on 26 July 2013