To think this a fucking disgrace- 3 months wait for disability payments- why?

[HumiditySucks]

Son diagnosed with Type 1 diabetes last week. He needs tech that we have to fund ourselves.

Apparently when you apply for DLA, they don’t pay out for the first 3 months after diagnosis- can anyone explain why?

Its not like it’s going to go away within that timeframe and won’t be needed!

We can just about afford the initial £160 a month for his monitor but plenty of families probably won’t be able to, especially in the current climate with cost of living increases/fuel price increases.

This is tech that NICE guidelines say should be prescribed but they’re only guidelines. He will also need an insulin pump which will take it up to £400 a month.

Bad enough that you get a shocking life changing diagnosis for a child living but you have to shell out for essential equipment from your own pocket too.

The criteria for PIP is different so if you did apply, you may not actually get it.

The libre does also alert, you can set it to alert low or high levels, I know right now you’re all
in fear mode, but why and for what purpose do you want alerts when he is at school? If you get an alert when you are at work what are you going to do? A parent turning up at school, or sending a text or calling for every alert is not going to build independence and unlikely to be on his diabetes management plan that is shared with school.

Why does he want a pump?

As a fellow type 1 its really important he can manage his diabetes manually, testing and injecting for a week is not good manual management, it will take weeks, he’ll have to experience different weather, exercise, stress (probably there on that one), illness like a cold etc. If he chooses to go straight for a pump and monitor he will not build those skills.

I don’t use a pump, I sometimes use a libre, I play a sport, so libres do get ripped out, while libre is great, it isn’t any use when its mashed into a rugby pitch. I need to know what my body does during exercise without simply checking data on my phone, I need to know what my body does during exercise so when my libre is ripped out I know what action to take. The only way I have been able to work that out is managing my diabetes manually during the majority of my rugby career. Diabetes is a constant learning curve, its really important that if you use tech you are competent when not using it.

The new Freestyle Libre 2 does have an alarm that can wake you at night, it’s available on the NHS.
The pumps aren’t foolproof, some people don’t get on with them at all.
DLA is appropriate for a 12 year old but once an adult he probably won’t be eligible as he shouldn’t need care.

@HumiditySucks OP check out Abbey Karnes on YouTube. She's an American T1 Diabetic with a Dexcom G6 (she also has an alert dog who is amazing and goes everywhere with her. He warns her of a high or low well before her Dexcom. She's saved her life a few times. I've learnt so much from Abbey https://youtube.com/channel/UCP0zaib-0SfqmqmXis_A5ow

The Diabetic alert dog in action https://youtube.com/shorts/uFTTZr7eINI?feature=share

The Dexcom is available on the NHS, but you may have to get it agreed by a funding panel. My dn has the dexcom but my db uses Libre and to me they seem to provide the same information and can be linked to my dsil's phone so she can see their blood sugar levels. Although sometimes when they are round the phones are continuously beeping!

With the insulin pump it is not the perfect answer. My dn has it as he was only 2 when he was diagnosed, but there have been problems like blocked tubes, the pump itself broke and had to be sent off to Korea (I think it was there) for 6 weeks to be fixed as apparently there in no one to fix them in England! They were provided with a temporary replacement during this time, but that had to be programmed and calibrated. My db has not opted to have a pump despite having had t1 diabetes for over 30 years. His reasons for it are he doesn't want a tube in him constantly and you have to have somewhere for the pump to go. DN wears a bum bag which is fine now, but I'm not sure if he'll want to do that as a teenager. Also my DB says he feels more confident for himself physically injecting his insulin as he knows that it has gone into him and he doesn't have to worry about whether the tube is blocked or the pump is dispensing properly etc. I think those things are quite rare, but for my brother he prefers to do things the way he has for a long time. He injects 4 times a day which means he can be a bit more flexible about his meal times than when he was younger and on 2 injections a day and had to have a rigid eating schedule.

Things have come on so much since my brother was diagnosed. Hopefully your NHS trust will be really supportive and there are many online support groups for junior diabetics. Your son will be offered the best kit for managing his diabetes, but it will take time as as several other posters have said the dr's will want him to adjust to the new regimes and get his insulin doses sorted.

Rightly or wrongly its not given as got x condition get x payment you have to prove how affecting your child's life so need to build up evidence for that.

Remember the tech has pros and cons. My friends dd had one for a year and stopped using it because she couldn't play full contact rugby (prior she played touch rugby), my other friends dd had issues with her pump so decided to inject as a teen.

@gogohmm
Correct. I had a pump for 10 yrs. now been injecting again about 6 yrs. sometimes I wear the continuous monitor, sometimes I just want a break!

@ermagerdabear wow you are rude I was posting the DM guidance. Obviously there are exceptions and reasons why particular look at children cannot manage their own diabetes. Your dd award is an exemption not the norm , there will be specific reasons why that decision was made. Maybe she has other health issues or her diabetes it's not controlled well , there will be a reason.

*particular children

To be frank, I doubt very much you will get DLA based solely on diabetes. T1 is life changing, yes, but without some serious complications, it isn't seen as in need of DLA payments.

@LilacPoppy you thought that was rude? Give it a rest 🙄 Do you work for the DLA department or have a child with diabetes?

To be frank, I doubt very much you will get DLA based solely on diabetes. T1 is life changing, yes, but without some serious complications, it isn't seen as in need of DLA payments

Well, you can doubt it all you want, but you're wrong.

I would also be surprised if DLA is awarded for Type 1 with no other health conditions.

The form asks questions around washing, dressing, toileting, eating, behaviour and mobility so if none of these areas are affected by the Type 1 he will not be awarded it.
The fact you want it to purchase tech will also be ignored as he is entitled to free kit via the NHS.

I have rather complicated type 2 that requires insulin, a basal bolus regimen that takes a lot of testing, due to insulin resistance, and a whole bunch of other inter-linked conditions.

Free kit? I got a finger prick BGM. If it dies, i get a new one but i do get yelled at if they die too often.

Insulin pumps and CGM are rare as rocking horse shit on the NHS, you can kick up a fuss all you like, unless there are other issues going on or your child is cognitively far below his actual age, he's capable of managing this probably with a simple basal regime as long as you/he can control what he eats fairly strictly.

DLA may award him, I think it is unlikely though as I can't see how he requires more than an hours extra care per day.

The cost of the CGM and insulin pumps won't be taken into consideration as the NHS have offered/will provide a suitable solution/suitable equipment free of charge. That the equipment is not the latest shiniest tech is not something they're interested in.

I think you need to take a step back and calm the fuck down, help your child learn to manage his condition without the tech, then you'll be better placed to decide if the tech is something you want to fund later on.

I have nomidea wether a child would be awarded DLA for diabetes or not my son gets DLA for entirely different reasons but LRC is an Hour a day extra care for DLA purposes .

No idea *

@ermagerdabear She isn't wrong. Dla is dealt with case by case. What one person gets doesn't mean another person will get the same. I see it day in day out. I have a friend with 3 children who are all type 1. She gets high rate for one child, rest was ignored and going through appeals. It also depends what evidence you have.

You come across quite aggressive. It's great your child gets the rate they need. But to advise others their child will get it so easily isn't helpful at all.

Insulin pumps and CGM are rare as rocking horse shit on the NHS

Insulin pumps are pretty common for children with type 1 on the NHS. And DLA is the norm - the majority get an award of middle rate care to 16, sometimes reviewed at age 12.

As you can see from here the guidance for decision makers actually states to award to 16. Only when considering night needs does it say to award for 2 years.

For very young children, yes - 12 years old is not very young.

There is some terrible misinformation on this thread.

Yes you should and will get DLA for type 1 diabetes.

Where do you live? If you change hospitals you are more likely to get CGM funding quicker. E.g. if you can get to Leeds, this hospital has much better access to funding for tech than smaller hospitals surrounding it. Similarly you would be likely to get a pump quicker there too than at other hospitals. Care is meant to be standard across the country but is nowhere near.

The consultant at Leeds (Dr Campbell) helped write the guidance about type 1 children which DLA use now. So DLA should be paid up to age 16 (previous DLA guidance was to pay it up to 12 on injections or 14 on a pump). Obviously you still need to submit evidence - a letter from your team will help.

I would apply before the 3 months as it takes a long time to process applications anyway.

If you earn less than a certain small amount (maybe £120 a week ish) you can get Carers Allowance once your DLA is sorted. If you get tax credits you will get extra on that award because of the DLA too (I assume same for UC but have no experience of this).

Also you are much better off joining some type 1 parent groups on Facebook rather than post here. Some of the replies you've had are shocking! People have no idea how hard it is to have a type 1 child. No idea.

For very young children, yes - 12 years old is not very young

My son got a pump last year, aged 12. Apparently around 30% of type1s in our area under 19 are on one.

Obviously you still need to submit evidence - a letter from your team will help

We were awarded DLA in the middle 2020 (so key pandemic period which may have made a difference). I did the application following the diabetes charity guidelines I posted above and sent it off. No letter from the dsn or school. I expected to have to ask for a mandatory reconsideration anf to provide a letter from a professional but it was awarded immediately, no letter required.

Obviously mid pandemic, who knows?! But a letter wasn't necessary. The best advice I had was write it describing the worst day.