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Type 1: Help please!!

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Rachel16008

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I did post on an older thread but I thought it best to start my own.

I wonder if anyone has had any success getting funding for CGM on the NHS? My son is 11 and has had T1 for 5 years. For the past year he hasn't slept well at all, often still awake at 2-3 am. He has had terrible "meltdowns" and regularly refuses school (having to be physically dragged there) even though he is bright & doesn't struggle or have any problems at school at all. Both us & school have been at a loss to explain this behaviour, until the last week, when he finally broke down & admitted he was terrified to go to sleep and was afraid he wouldn't wake up again if his sugars went low or high in the night. He has had a pump for 2.5 years & manages well with pretty well controlled levels so wouldn't meet criteria for CGM for hypos, however, I wonder if the mental health angle would have any mileage. He has a CGM for 2 weeks and it was started on Sunday. He has slept beautifully for 2 nights & says he feels "safe" because it will warn him if he is going low or high. We are devastated by the change in our happy lad and very concerned that his mental health is affecting his schooling as he is often so exhausted he simply will no go. He has met with the phsycologist from the Diabetic team but he simply clams up & says that everything is fine.
If anyone can offer any advice I would be truly grateful. The effects of this are taking a tremendous toll on all of us :0((
 
That's awful @Rachel16008 I understand why he's afraid because I'm sure many Type 1s have worries like that sometimes but I'd never have thought those things would occur to a child.

Have you formally asked for a CGM? Is the one he got borrowed?
 
Sorry to hear is @Rachel16008 what a really difficult time this must be for all of you. Yes I would suggest that on the basis this is having such a detrimental effect on all of you that he would meet criteria for funding. Do you know how he has picked up on this behaviour, so what's triggered his train of thought ? Short term until something can be done I would suggest maintaining a routine to build his confidence, so look at a regular pattern of eating before 7pm so you can test before bed say at 10pm when his quick acting is depleted and looking at a target of say 8mmol/l before going to bed, then setting the alarm for a test at 2am when his BG would be lowest during the night to check again and then sleep through till morning. If he knows that he doesn't have active qa insulin on board before bed then he should realise that as long as he is above target then the likelihood of going low during the night is very low, however a test during the night will help him realise he is safe and can sleep through. Obviously run this past his DSN, but to help in the short term and to try and overcome this way of thinking as well as building his confidence it could help.

You can also purchase the Abbot Libre to check his BG through the night too, ok it's a personal cost but to someone in this situation it is a game changer as you can scan him when he's asleep too to see what's happening, it's a case of re-building confidence so he can relax at night and sleep better.

My heart goes out to you as its exhausting enough without this added on, ask your DSN they will be able to help :)
 
So Sorry to hear of your little ones troubles and fears.. I agree re the Libre - been a game changer for me and with knowing that you can scan the sensor without waking him and see whats going on and wake him if need be may give him the re-assurance needed for a good nights sleep... The cost is about £48 per 14 days and you may get a free reader if your lucky from your DNS.. don't know about funding but maybe with support from your DNS/Consultant you may be eligible under the circumstances to claim DLA which may help... especially as there are also mental health worries now which is affecting his quality of life.. don't know but maybe worth a shot... Your DNS should happily supply a supporting letter hope things work out for him :-)
 
I'm sorry to hear that your wee one is having these problems, I know the feeling as I do not have any warning signs of hypos and I have trying to get my health board to pay for a CGM for me. My consultant at the diabetic clinic has put my case to the board but I have been turned down. I am going to try again when I go back to the clinic in March. I have written to my local MP and also the health secretary (I live in Scotland). I have been sent a letter from my MP to say the Scottish Government have given £10 million funding to improve the management of type 1 diabetes, specifically the additional funding will be used to increase the provision of insulin pumps and also help to provide more people with CGMs. In the meantime I am self-funding as I have had a few episodes where paramedics have had to be called out. Don't give up, keep asking for a GCM for your son. Good luck.
 
azure said:
That's awful @Rachel16008 Type 1s have worries like that sometimes but I'd never have thought those things would occur to a child.
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Speaking from experience as a T1 kid in the mid 1970s.. I heard a few stories regarding uncontrolled diabetes.. Kidney & eye failure mainly. A "cautionary tale" about a certain young girl or whatever sitting in a ward, going blind.. My mum used to work in a hospital... It can certainly get a young enquiring mind thinking...!

One summer our local police force hired a double decker bus "decked out" to promote child awareness of "stranger danger"?
I already had this instilled into me about "strange cars" & such like. & was also clued up by Charley the cat..
I gave em all a wide birth Inspite of a copper trying to hand me a leaflet... ;)

There's nothing wrong with being confidently mindful.. But @Rachel16008 's young 'un? I feel needs counselling & meet a few Ds that take the sunrise in the morning for granted...
 
Hi and welcome! Glad you found us.

I hope you make progress on funding for a CGM. It sounds like you could put forward an excellent argument for one.
And I'm really sorry to hear about your son's fears. Fears and sleep deprivation make a horrible combination.

Just thought I should mention that the Freestyle Libre is wonderful (I have one myself), but it has no alarm function, like other CGMs. So it wouldn't alert you to a hypo in the night. Having said that, it is a fantastic tool, and he may find the fact that you can scan his arm without waking him up, or pricking his finger, very reassuring.
 
michaela2015 said:
Have you thought about getting an alert dog, there is funding for them?
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I don't think there is funding for them exactly. There are medical alert dogs provided by a charity. There is a 3 year waiting list and then a year training once your at the top of the waiting list.

@Rachel16008 fear of hypos is a reason that can result in NHS funding for CGM. However I'm not aware of this having actually been successful in any case. The decision on funding will come from your CCG. To apply you will need an individual funding request completed by your consultant.

So first step is does your consultant thing there is a clinical need for CGM? They might want other steps to resolve the fear first a bit of education for your son on risks of diabetes. A bit of education on managing diabetes - get him involved in running basal testing that might give him confidence that he isn't going to go high or low over night because his basal dose is tested to keep him steady. Do you test him at all overnight? That might give him a bit of reassurance. I think DLA is available for children with type 1 and that might be a route to self funding a CGM.

Also exhaust the psych support available to you, even if he's not especially open to it. Now he's opened up to you that might be a route in.

Have a look at JDRF and diabetes uk to see if there are events to meet other families with type 1 - just seeing other people getting on with it might help.
 
azure said:
That's awful @Rachel16008 I understand why he's afraid because I'm sure many Type 1s have worries like that sometimes but I'd never have thought those things would occur to a child.

Have you formally asked for a CGM? Is the one he got borrowed?
Click to expand...

Thanks for your reply, yes we are currently borrowing a CGM for 2 weeks. I will contact the team & make a formal request.

He's a very bright little lad (so his teachers tell me) & whilst he is tiny in stature (looks about 8) he speaks & thinks very like a teenager & he has a very good understanding of diabetes & long & short term effects, which whilst a good thing in terms of mangemaent, I don't think he is emotionally ready to cope with what he intellectually understands, if that makes any sense.
 
Hi all,
Thanks so much do all your replies. I'm still getting to grips with the forum & I typed a long reply that seems to have disappeared! Let's hope this one works.

Yes, at the moment we are borrowing a CGM for 2 weeks, but I am going to ask the consultant for a funding request when we see the team. I do think he needs some counselling & Im hoping now that we've had a bit of a breakthrough I'm hoping he will be a little more receptive. There is a local diabetes family group so I will try there for some opportunities to meet other families.

I think that a lot of the concern has arisen because he is a very bright boy (so his teachers tell me) and whilst tiny in stature (like an 8 year old) he is more like a teenager in his ideas & understanding. Emotionally however he is nearer his real age, and therefore less able to cope with what his intellectual ability allows him to understand. I have thought for a while that I wish the DSN & team would allow us time at appointments when he isn't there. I know everything is "child centered" these days, but sometimes there are worries to discuss I wish he wasn't there to hear.

It's a tough road for all of us, and it's been an horrendous year, but in a way it's a relief to finally have an idea of what's wrong & some ideas about how to proceed. I'm so glad I posted as I feel a little better already xx
 
Rachel16008 said:
Thanks for your reply, yes we are currently borrowing a CGM for 2 weeks. I will contact the team & make a formal request.

He's a very bright little lad (so his teachers tell me) & whilst he is tiny in stature (looks about 8) he speaks & thinks very like a teenager & he has a very good understanding of diabetes & long & short term effects, which whilst a good thing in terms of mangemaent, I don't think he is emotionally ready to cope with what he intellectually understands, if that makes any sense.
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Your reply was here, I think - just hidden in the quote box :)

I think a formal request is good. Perhaps you could ask for funding for a certain length of time only, if you feel that may be more acceptable to them? It could be that a year of CGM will reassure him (just using a year as an example length of time).

As he's so bright maybe it's worth having a carefully planned chat with him about things. For example, you could talk about the pump and about how it can reduce hypos, how he only has small amounts of insulin in his body not a dose of long acting insuljn that might be absorbed erratically. Hopefully, something like that may have some effect. If you tested his blood sugar in the night, then you could also show him it's ok.
 
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