CHOSEN Helping Hand nomination for six year old Thomas to have a CGM Device fitted, nominated by Kerry Mumby at the Jenrick Engineering Crick Office.
WHAT IS YOUR HELPING HAND IDEA / INITIATIVE
My best friend Lisa has 3 children, Thomas aged 6 and twins Annie and Emma aged 3. Thomas was diagnosed 2 years ago Diabetic Type 1 and he has learning difficulties. Life is becoming extremely difficult for Thomas and his family as a result of his conditions. I am asking you to nominate Thomas to receive £1000 towards paying for him to have a CGM Device Fitted – This device can detect and notify you if your glucose is reaching to high or low limit.
WHAT IS THE BACKGROUND OF YOUR NOMINATION
Diabetes Type 1 - is where the pancreas does not produce any insulin- the hormone that regulates blood glucose levels and therefore you become insulin dependant. If the glucose in the blood is too high it can cause serious damage or even death. Without insulin your body will break down its own fat and muscle resulting in weight loss, leading on to your bloodstream becoming acidic and develop dangerous levels of dehydration. Type 1 is an auto immune condition where the immune system mistakes the cells in your pancreas as harmful and attacks them. Diabetes cant be cured but treatment aims to keep your blood glucose level as normal as possible and controls your system. So Thomas’s body can not produce insulin and requires regular insulin injections to keep glucose levels normal and Lisa his mother is trained to match the insulin injection to food of which he eats. Other than a transplant of the pancreas the alternative treatment plans are:
- Insulin Pump Therapy or
- 2) CGM ‘Continuous Glucose Monitoring’ Device (Dexcom G5).
- Insulin Pump is a device that constantly pumps insulin at a rate you control via a needle that’s inserted under the skin.
- CGM Device – This device can detect and notify you if your glucose is reaching to high or low limit. The CGM is made of a glucose Sensor, a transmitter and a small external monitor.
Dexcom is a mobile continuous glucose monitoring system. With Bluetooth® technology that is now built in to the transmitter, your glucose data is sent wirelessly from the Dexcom G5 Mobile transmitter to your compatible smart device- Apple Watch. Continuous Glucose Monitoring (CGM) is an FDA-approved device that provides real-time glucose readings, throughout the day and night, allowing people with diabetes to see their glucose levels and track how quickly they're increasing or decreasing. CGM has been an established technology since 2006 and performance advances throughout the years have made today’s systems increasingly accurate.
A typical CGM provides up to as many as 288 glucose readings per day (once every 5 minutes). CGM does not completely eliminate the need for blood glucose meter readings but provides additional information for more informed treatment decisions and improved glucose control. CGM can be used by people with Type 1 or Type 2 who are concerned with their diabetes management. The picture on the right-hand side - this is Thomas with Emma on the left and Annie on the right.
Thomas is built very lean and that’s because his body is eating his fat and muscle due to the inconsitency of his blood sugar levels and that it is increasing becoming more difficult to regulate. And also comparing Thomas with an average 6 year old in terms of physically is huge -as you can see his sisters are 3 and he is 6 and there isn’t much in it as it is slowing down his growth.
HOW WOULD THE FUNDS BENEFIT THEM?
The differences this device will provide and make to Thomas will be phenomenal. It will mean the following:
- Thomas will be able to attend school more regularly and catch up with his milestones.
- Thomas will be able to eat and enjoy foods as any 6 year should more freely.
- Thomas will be less dependant on his mother
- Thomas will be able to attend after school, activities and parties.
- Thomas sugar levels will be monitor every 5mins and therefore which will enable his blood sugar be kept at a constant level
- Thomas will then as a result have less erratic behaviour and gain some normality in his life
- Thomas will spend less time in hospital
- Thomas will be less prone to infection
- Thomas and his family will have a better quality of life together because every body will be able to sleep better during the night
- Thomas’s body will be stable from a blood sugar level point of view and therefore should then be able to start to grow in terms of height and gain weight and body fat.
- Lisa his mother will be able to get a bit of her life back to a reasonable amount of normality as he was diagnosed with post natal depression following the birth of the girls and therefore takes anti depressants and is very keen to get off them.
So your probably left thinking where do the NHS come in, over the last 2 years the hospitals, paediatrians and the NHS England all agree that Thomas meets the criteria to have this funded but unfortunately they have spent this time arguing who should fund it. Whilst this financial battle continues a little boys life continues and is very quickly becoming worse as each day continues they and have been working as a family with the diabetic nurses to regulate and gain control to no success.
The starter kit is made up of the following and would last for approximately 1 year: equates to approximately £7000.
- Starter kit between £1,010 and £1,325
- Transmitters £350 each and need replacing every 3 or 9-12 months depending on G4 or G5
- Sensors and applicators £65 each, lasts approx a week, so 52 weeks a year plus spares for accidents etc £3,900 (60 x £65)
- Smartwatch (apple or pebble depending what can hook up) between £100 and £300
So please VOTE for Thomas now he needs this, and let me worry about where I can get the rest of the monies from. This will make a massive start, as we can not wait for the NHS to decide its been 2 years already and then once we have demonstrated to them the difference that this will or have made to Thomas’s life then it will further push the NHS to fund it thereafter.