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feeling guilty..

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WorriedT1Dmum

New Member
Relationship to Diabetes
Parent of person with diabetes
My son was diagnosed at age 5 he's now 17 ,and he's amazing! He has great control ,he really looks after himself and is so smart and sporty his diabetes hasn't held him back in any way! Up until he was 16 I had financial help (DLA) I'm a single mum , was working and raising 3 kids alone. Until recently I've had alot of health issues ad I am unable to work and relying on universal credit ,my son was refused pip even tho he has lost hypo awareness, I am so desperate I am struggling to feed him what he needs to maintain his ever growing teenage body and his hypo's are becoming more frequent! The guilt is consuming me I feel like I'm failing him, after all my bills are paid I have £70 to feed him for a month,I've cut costs on a lot of things. I have switched to cheaper energy suppliers, I have cancelled phone contract , I have cut back on everything possible! I've gone without food for 4 days myself just to make sure every bit off food I have goes to him, he is my absolute life and I worry non stop! any advise is greatly appreciated ,I don't know where to turn ..
 
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Hello worriedT1Dmum
Sorry to hear things are hard for you at the moment. Have you appealed the PIP decision?
It might be worth considering if you haven’t.
 
Good morning loulou23 ,We did ask for a mandatory reconsideration which was refused even with a letter from the doctor stating he has lost hypo awareness and was suffering with unexplained night time hypo's ,we could of took it further but as my son is over 16 he would have to do it himself appear in front of a tribunal of sorts an he is a very shy boy, he doesn't understand the system an he was in the middle of exams in school an his night time hypo's where awful I could not put him under any more stress than he was putting himself under with wanting to do well in his exams,so it didn't go further than the mandatory reconsideration.
 
Hello @WorriedT1Dmum Welcome to the forum. I am sorry to hear of your situation. what a worry for you. sorry I cant help with benefit queries etc but am wondering if you phone our helpline 0345 123 2399
and or the Citizens advise bureau as they may be able to help.

Also as your son has lost hypo awareness I am thinking an insulin pump would be helpful, I Know from reading on here that the criteria for getting a pump is set quite high but in my opinion it would be well worth asking your sons diabetic team about one. unlike pens they can be fine tuned to a persons needs and I believe stop insulin delivery when dropping low
 
Thankyou for your reply, he's been on the insulin pump for just over a year they gave it him as a reward for the best control in clinic ,his loss of hypo awareness and night time hypo's started when his exam prep started so we are just hoping it could be stress related due to exams etc an his growth ,there's so much at play with teenagers ,growth,stress, hormones.hes been diabetic 12 years and I still hate seeing him in a hypo ,last week I had to have an ambulance to him cos he was fighting me and that's never happened before, I'm in unfamiliar territory with him right now , I'm having to check him every 2 hours nightly! Diabetes never sleeps. I'm working with the hospital we've lowered basal , extra carbs , carb ratio we've tried everything's possible he will go to bed with perfect numbers but still go hypo in his sleep , if he has another severe hypo in the next few days he's looking at a hospital admission cos the more he has the more dangerous it is ,they want to check see if he's built up food intolerance's or something
 
Hi. I’m really sorry to hear about your situation, it sounds awful. It sounds like you are doing a great job, so try not to feel guilty. I can only echo what Ljc said about contacting the DUK helpline and Citizens advice. Please don’t put your own health at risk, though. You won’t be able to help your son if you are unwell.
 
Thanks billy ... I'm certainly trying my hardest , aslong as my boy is ok I'm ok 🙂 I'll give them a call see what they say it can't do any harm.
 
If the night time hypos continue, keep phoning up about them, ambulance or rapid response medics, then tell all his HCPs, ask for someone to help monitor him, be as much of a nuisance as this serious situation demands - ask about food banks, if he does go into hospital there should be people there who should be told that you are struggling to cope financially and with care.
I do hope that you can find help.
 
Hi @WorriedT1Dmum,

Sorry to hear that you are and your son are having such a difficult time at the moment. You are clearly a very strong and supportive mother.
It can be very frustrating when transitioning from DLA to PIP and many find that the latter can be harder to obtain. The criteria are not paricularly clear cut when assessing in relation to a medical condition such as Type 1 diabetes that does not necessarily always present itself. I understand that at this point, challenging the result further may not be something that you wish to proceed with due to the potential stress of the process on your son.

However, it does sound like you are still in need of some more support. Have you considered any support that you may yourself be eligible to due to your own health concerns, or other support that may be available to your son that is not diabetes related?

There is an organization called Turn2Us that can offer guidance as to what you be be entitiled to. You can try their 'benefits calculator' to see if there may be alternative solutions. It might also be worth contacting them to see if there is any other financial support that may be available to you: https://www.turn2us.org.uk/

I will send you a PM as well, to see if there is any way we can help you to access further support. Best of luck, you are doing an amazing job, but please remember that is important that you are looking after yourself as well.
 
WorriedT1Dmum said:
Thankyou for your reply, he's been on the insulin pump for just over a year they gave it him as a reward for the best control in clinic ,his loss of hypo awareness and night time hypo's started when his exam prep started so we are just hoping it could be stress related due to exams etc an his growth ,there's so much at play with teenagers ,growth,stress, hormones.hes been diabetic 12 years and I still hate seeing him in a hypo ,last week I had to have an ambulance to him cos he was fighting me and that's never happened before, I'm in unfamiliar territory with him right now , I'm having to check him every 2 hours nightly! Diabetes never sleeps. I'm working with the hospital we've lowered basal , extra carbs , carb ratio we've tried everything's possible he will go to bed with perfect numbers but still go hypo in his sleep , if he has another severe hypo in the next few days he's looking at a hospital admission cos the more he has the more dangerous it is ,they want to check see if he's built up food intolerance's or something
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Tell him well done for getting the pump. They are the most adaptable. Stress always does me in, with low bg. Some it does not but it gets me.
 
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