Hi my name is carole99. I have joined this group to try to get some knowledge for my son. He is 38 years old type 1 on nova rapid and toujoe sol star bolous. He is all so coeliac and finding life difficult as the gluten free products are high in sugar we find. His recent blood was 101 which is showing very poor control. He is a manual worker and works alone he runs is bloods at 10 as he doesn’t want to have hypo alone at work. He has the disc on his arm and this goes off regularly in the middle of the night showing low blood, in 2022 we asked the hospital for insulin pump but they didn’t listen. He is still under consultant care never under gp. Please could someone advise what we need to do to try and get a pump to help him control his diabetes for example words we need to use. His foot care is exceptional pulses in feet and sensations excellent. Eye screening isn’t the best.
-
Guest - w'd love to know what you think about the forum! Take the 2025 Survey »
Advice and help
- Thread starter Carole99
- Start Date
Mark Rawlinson
Well-Known Member
- Messages
- 569
- Type of diabetes
- Type 2
- Treatment type
- Insulin
I am not type 1 nor use either of the dosing/reading methods you mention but it may be worth asking your GP or even diabetic nurse (if there is one), explain as you have on here
Thank you I will contact the local health authority who fund the care in my area as GP and Hospital not listening.
thank you so much I thought that’s what these pumps were designed for to stabilise type 1 diabetic patients I have known similar patients get pumps but they seem to be ignoring our request I can be a force to be reckoned with if I set my mind to something. I would fund this for him myself but monthly consumables are quite expensive I don’t mind purchasing a pump if nhs would fund the monthly consumables.
- Messages
- 10,413
- Location
- New Zealand
- Type of diabetes
- Type 1
- Treatment type
- Pump
- Dislikes
- hypos and forum bugs
How long has your son been diabetic @Carole99 ?
In my experience consultant care is better than GP but if he's running over 10 in the day and getting hypos at night it suggests that there is something in his regime that needs changing. (Though pumps do help it's best if you also understand how MDI (multiple daily injections) work as well.)
Has he been on a DAFNE course? (Though I have a pump now I spent over 50 years on MDI so am fairly familiar with it.)
The NICE pump guidelines are here
Though he may well qualify they tend to prioritise children and pregnant women so I suspect there will be a wait. There also seems to be a bit of a postcode lottery as to who gets one.
Good luck.
In my experience consultant care is better than GP but if he's running over 10 in the day and getting hypos at night it suggests that there is something in his regime that needs changing. (Though pumps do help it's best if you also understand how MDI (multiple daily injections) work as well.)
Has he been on a DAFNE course? (Though I have a pump now I spent over 50 years on MDI so am fairly familiar with it.)
The NICE pump guidelines are here
Though he may well qualify they tend to prioritise children and pregnant women so I suspect there will be a wait. There also seems to be a bit of a postcode lottery as to who gets one.
Good luck.
I have recently started on a HCL pump (Omnipod) and it has made a massive difference to me, for the better, after nearly 43 years as an insulin dependent Type 1. There seems to be a great deal of difference in how individual clinics respond. My previous clinic, which I had attended for decades, said that they could not help me, even if I were to self-fund so, at the suggestion of someone on this forum, I changed to another, who could not have been more helpful. For me it has been life changing. I simply do not understand why these pumps are so restricted as surely money would be saved in the long run if they were available to all. This took several months to arrange. Now for the less positive news. I have to fund it privately and it is expensive, at around £310 per month. This is difficult, but for some it would be impossible. Hopefully these pumps will become more available in the not too distant future, as happened with the CGMs. I still get all the insulin etc on the NHS.
Hi @Carole99 , I know your post is asking about your son’s T1 specifically, but I just wanted to briefly mention his coeliac as I’m sure it’s probably impacting his blood sugar significantly and, therefore, his insulin needs, especially if he is eating bought gluten free products.
I’m also coeliac, but not T1, (I am in the high risk group though) . I’m on an 100% gluten free diet. I’m extremely sensitive to gluten, my body reacts with just minuscule amounts of gluten, even at levels around 20 mg/kg. I avoid purchasing gluten free products because of the high sugar content , and inevitably the high carb content like corn and rice flour etc . My brother, who was a professional chef, taught me how to cook. It transformed my eating habits as I would mainly eat out. Before being diagnosed I rarely cooked. Now I choose quick and easy simple meals . I make desserts, but reducing sugar content significantly. I choose high protein foods like steaks which are quick and easy. Just a thought. I’ll end it here as I don’t want to blow your thread off course .
