Hi I’m mum to a 30 year old man with type 1, and also he is coeliac. He was diagnosed t1 6 years ago. Still struggling to get levels consistent. Consultant said a different long acting would help but can’t be funded! Gets very different advice from ‘professionals ‘. Currently I’m paying for freestyle insulin monitor. Cannot get funding. Now waiting to see about getting a pump and CGM. Anyone in herts area been funded for these? Thanks.
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Concerned mum
- Thread starter Janb
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SB2015
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- Type 1
Welcome to the forum @Janb. I am sorry to hear that your son is struggling with his T1 at present.
Do you know what strategies your son has used so far to try to get his BG levels more settled.
Can you tell us what insulin’s he is using at present.
Sorry to give you more questions but it will help us to give more useful advice.
Do you know what strategies your son has used so far to try to get his BG levels more settled.
Can you tell us what insulin’s he is using at present.
Sorry to give you more questions but it will help us to give more useful advice.
Hi
Ok so he has attended idac. Fiasp and levimir are his insulins. Being coeliac doesn’t help as if he gets some rogue gluten it has huge effect. He is very physically active- gym and dance. He admitted that if his wife is out and he takes their son out he runs high as scared of having hypo with him. He can run from 4 to 28 in same day often. Seen community team. I pay every 6 month for private consultation as not impressed with hospital. Sorry to sound negative. Nhs wonderful but he hasn’t had the best support.
Flower
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Hello and welcome @Janb 🙂
What have the diabetes team said to your son if/when he asked about Freestyle Libre on prescription? The criteria for accessing the Libre on prescription have changed this year, more people are getting it on prescription -a lot still don't- but here are the criteria from April 2019 https://www.diabetes.org.uk/get_involved/campaigning/flash-glucose-monitoring - click on the relevant part of the UK.
What have the diabetes team said to your son if/when he asked about Freestyle Libre on prescription? The criteria for accessing the Libre on prescription have changed this year, more people are getting it on prescription -a lot still don't- but here are the criteria from April 2019 https://www.diabetes.org.uk/get_involved/campaigning/flash-glucose-monitoring - click on the relevant part of the UK.
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SB2015
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- Relationship to Diabetes
- Type 1
I am not sure what the Idac is. Is that en education course? Knowing how to do carb counting, which is taught on a T1 course, is essential to keeping levels good. If he has not been given an education course it is well worth asking for this. It is available on the NHS. Not sure what happens privately.
I am not sure how the private system works, but if the change in insulin prescription comes from there is that why is would have to be self funded? What alternative has been suggested and which is the one they suggest changing.
The two insulins that he is using should give him quite a bit of flexibility, especially if he splits his Levemir (basal) to morning and evening injections. The split Levemir gives him the chance to adjust his basal insuion during the day without needing to adjust the night time insulin.
Using the Libre can give information that enables a user to head off highs and lows, and also identify changes that could be made to food selections and to portions sizes. Has he been given any training about this? There are some excellent videos produced by abcd https://abcd.care/dtn/education. They cover a lot of ways of improving time in range using the Libre and I wish I had had access to these when I started using the Libre
With regard to driving I understand his caution. When I have an appointment to which I need to drive, I now try to remember to check my level on Libre 45 minutes beforehand. The level along with the direction of travel arrow help me to make sensible choices about any carbs to take on board, to ensure that I am ready to safely drive when I need to.
A pump can make quite a difference even without the CGM. Combined with the information from the Libre it is possible to get a good HbA1c, and high level of time in range.
Come back with any more questions you have, and ask if anything above does not make sense.
Thanks will pass along to him. We self funded for a while but community team say he doesn’t meet criteria- we believe he does. Waiting to see specialist about a pump, but has been warned a year waiting list even if agree he qualifies!
Isaac is about carb counting. He does, I believe, split his long acting.
The private consultant also works at outlet local nhs. She is very good at moving him in right direction to get nhs treatment. She said nhs won’t fund the insulin.
SB2015
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- Type 1
Can you tell us what insulin it is Jan. There may be others using it that get it funded by NHS which might help you.
Hi there
Diclodec
SB2015
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- Type 1
Hi @Janb
I have just looked up Diclodec, and it appears to be tablets which are a combination of paracetamol and other things. So perhaps it is an additional med that he is being offered (I know that paracetamol is in general off the list of meds that can be prescribed so that makes sense).
I was refused a pump the first time I asked. I asked them to list their reasons and then spent the next 6 months gathering evidence to tackle their concerns and to meet the Criteria set by the local CCG, to support my claim that I needed one. That worked, so if he doesn’t get one the first time and he wants one I suggest he gives it another try.
It was only by joining this forum that I started to consider the timing of my Bolus Injections t meals. I had been told originally to do them when I ate or immediately after. I always spiked after a meal and when I got the Libre I saw just how high those spikes were. I started to bring my injection forward ahead of the meal, so long as I knew exactly when I was going to be eating. With trial and improvement I have worked what suits me, with different timings for breakfast and for other meals. Where I am able to do this, and I keep to a target of 30g of carbs each meal, I am able to change those massive peaks to blips on my Libre graphs.
I have just looked up Diclodec, and it appears to be tablets which are a combination of paracetamol and other things. So perhaps it is an additional med that he is being offered (I know that paracetamol is in general off the list of meds that can be prescribed so that makes sense).
I was refused a pump the first time I asked. I asked them to list their reasons and then spent the next 6 months gathering evidence to tackle their concerns and to meet the Criteria set by the local CCG, to support my claim that I needed one. That worked, so if he doesn’t get one the first time and he wants one I suggest he gives it another try.
It was only by joining this forum that I started to consider the timing of my Bolus Injections t meals. I had been told originally to do them when I ate or immediately after. I always spiked after a meal and when I got the Libre I saw just how high those spikes were. I started to bring my injection forward ahead of the meal, so long as I knew exactly when I was going to be eating. With trial and improvement I have worked what suits me, with different timings for breakfast and for other meals. Where I am able to do this, and I keep to a target of 30g of carbs each meal, I am able to change those massive peaks to blips on my Libre graphs.
Kaylz
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- Type 1
Hi Janb and welcome to the forum, sorry to read about your son
Do you mean Tresiba Degludec as the long acting insulin that may help?
I am on it but I'm up in Scotland and believe I was very lucky as it only started being prescribed in Scotland a month before I was diagnosed, I believe there are quite a few of us now on Tresiba, I'm sure @Bloden is one of them
xx
Do you mean Tresiba Degludec as the long acting insulin that may help?
I am on it but I'm up in Scotland and believe I was very lucky as it only started being prescribed in Scotland a month before I was diagnosed, I believe there are quite a few of us now on Tresiba, I'm sure @Bloden is one of them
xx
Yes my mistake. His consultant thought would help but go refused to fund! Seems to be a lottery. Glad you are getting the help.
Too expensive is what I understand. With no guarantee will help,
He is seeing specialist in November about getting a pump so we shall see! I just worry about the highs due to eyesight!
Thanks for your reply
Kaylz
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- Type 1
Unfortunately it isn't just highs, I've already had eye problems that started less than a month after I was diagnosed type 1, so even staying in range can have problems xx
SB2015
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- Type 1
Thanks Jan.
Sorry he has been refused funding for this insulin.
I hope that some of the 5e other strategies suggested on here can help your son, and that he has some success with getting a pump.
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