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Advice and help

C

Carole99

Newbie
Messages
4
Type of diabetes
Type 1
Treatment type
Insulin
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.
 
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
 
Since 2022 the advice for providing pumps has changed, for the better. I would recommend you get your son to contact his consultant (hospital) and ask again. Please let us know how he progresses with this.
 
Thank you I will contact the local health authority who fund the care in my area as GP and Hospital not listening.
Chas C said:
Since 2022 the advice for providing pumps has changed, for the better. I would recommend you get your son to contact his consultant (hospital) and ask again. Please let us know how he progresses with this.
Click to expand...
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.
 
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.
 
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.
 
Carole99 said:
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.
Click to expand...
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 .
 
Hi Carole.

Pretty sure your local health authority will not help you, you need the hospital to arrange it with them. I understand this is frustrating for you but you need to try the consultant (especially if you have not spoken to him/her about this for two years). If your consultant refuses, keep the letter with the the consultation report (issued after each visit), make sure the refusal is documented in the letter. Hopefully it will not get to this but if it does then please let us know. Please check your messages.
 
Hi,
Just to add that I wrote to my local councillor, to my MP and to the Integrated Care Board. My MP wrote to the ICB as well. Basically none of this got me anywhere, apart from the usual platitudes about cost etc. Basically it seems to come down to the attitude of your clinic. The one I moved to falls within the same ICB, but their attitude could not have been more different. It was actually Omnipod who gave me the name of someone to contact at my new clinic. It was all complicated and time consuming, but we got there in the end. Don't give up! It has made such a difference.
 
Not just the clinic but it can also come down to the attitude of the consultant
Back in 2017/8 I was trying to geta pump, every time I saw the consultant he basically said 'well it would help' but other people may need it so you cant have it - gee thanks.
Then at the end of 2019, he retired, new consultant - first time I saw the new consultant he agreed that yes a pump would definitely help me and I got approved
 
Thank you I appreciate any help, the problem is that they buy gluten free products rather than cook themselves neither him or his wife do much fresh cooking - he likes steak and chicken doesn’t like fish or eggs I do cook casseroles for them using gluten free gravy granules for gravy. Could you recommend a cook book I could buy them?
 
Thank you so much going to quote the nice guidelines to the consultant although he wasn’t keen on me sticking my bib in last time but they need to support him and thus making him feel well in himself. Do you have a link for the self funded option as my son couldn’t afford this but I would do.
 
Hi Carole. I use the Omnipod Hybrid Closed Loop pump and, apart from few teething problems and a couple of failed pumps, which they replace, I have mostly achieved near perfect control. They need to be changed every three days and this takes about 5 minutes once you get used to it. They work in partnership with a CGM - Dexcom or Libre Link 2, which I still get on prescription from the GP, as well as the insulin, ketone testing strips etc. Honestly it's so clever. No more eating Jelly Babies and biscuits in the middle of the night! I just contacted Omnipod via their website www.omnipod.com. The thing is, Omnipod need assurance that your clinic will provide support, hence the change of clinic for me. My new clinic trained me, though Omnipod said they could train me if needs be. Once you get going on it, the average person probably won't need a huge amount of support. It's been a game changer for me and I hope it will be for your son too.
 
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