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.

Right, so 70%... the majority, a pretty vast majority.. do not.

Its disgraceful. And there is no use looking for any rational reason for it. There isn't one. It's a cost cutting measure. Just like so many others that underpin benefits legislation.

There is some terrible misinformation on this thread.

Absolutely. And ithis thread is a microcosm of what you'll hear in the real world from people with no understanding of T1 diabetes or how it affects a child.

I think you need to take a step back and calm the fuck down

This is a disgusting thing to say to a parent of a child who's just been diagnosed with a life threatening illness. You should be ashamed of yourself.

Sorry as a disabled person myself I stand by that - the very best thing you can do in this situation is step back, calm the fuck down, think, follow the NHS support and guidelines, and when you know more, when you understand more and know how it truly affects your life and your childs life, more importantly - THEN you can decide what you need, what you'd like and what you can cope with.

Freaking out and deciding that shiny expensive tech will solve all problems, and getting angry and annoyed that it's not provided will do the op and their child no favours at all, there are lots of reasons why that tech isn't handed out to everyone the moment they're given a DX, some of them aren't great (lack of funding in the NHS) and some of them are perfectly logical (tech fails, child needs to learn to manage without tech first, tech and active running about sports doesn't go well together...).

There will be many obstacles to overcome, lots of battles to be had, but save your energy for the ones that are a worthwhile use of that energy!

"Shiny expensive tech" is completely standard for type 1 diabetes. Look at Dr Partha Kar on Twitter. He has got the NICE guidelines changed so all type 1s should have Libre or Dexcom if they want it.

It is cost effective because of the long-term health impacts it reduces, and can increase quality of life immensely.

Just because you are a "disabled person yourself" doesn't mean you know anything about children with type 1 diabetes in 2022. We know the tech doesn't solve ALL our problems but it can make life so much easier and better. Why would you not want people to have that?

Yes you should be getting it sooner.

But all the pump and libre and monitor you should be getting anyway. What does the consultant say. Demand it, and demand it now. You are entitled,
You are allowed don't let anyone tell you that you're not.

I've never paid for a single thing - for my diabetic prescriptions or any of my diabetic insulin, medicines, glucagon injections, testing strips, or Pump, pump accessories, Libre2, CGM . nothing and I've been diabetic for 50 years.

Where do you live? Whose telling this shit? Why don't you complain? Get referred to one of the bigger hospitals near you with say 12 consultants instead of the 2 you mentioned on your other thread.

No one and I mean fucking no one will ever deny me having any diabetic equipment I want.

There are some fabulous fabulous hospitals all over the country I've been at quite a few of them. QA in Portsmouth, John Radcliffe in Oxford, Kings in London is where I am. Get your self transferred. They have 4 or 6 pump specialist nurses minimum.

Im not saying it definitely won't..

Im saying that a week post dx, this mum and her child do not understand her childs condition yet. They can't, its been a week. It takes weeks of faffing about with dosing and regimes and types of insulin to work out whats right for you, what works, what doesn't.

The OP appears to have glommed onto the idea of CGM and pumps as the best solution due to the NICE guidelines but they are guidelines, they are not 'this is guaranteed to be best for YOU'.

As people who have used them in this thread have said, they're not perfect - they block, they fail, and they don't teach you to monitor your condition yourself as a second nature which every insulin dependent diabetic NEEDS to be capable of doing.

The OP hasn't even understood the DLA application conditions yet - its 3 months after the onset of the condition, not 3 months after DX, but if she's claiming for the care required to manage a diabetic on insulin, then it will be 3 months after treatment begins in reality, before she knows how it affects them sufficiently to put that information into the form.

Shes focusing on the wrong things at the minute - understandable, what parent wouldn't want to make everything better, and as easy as possible for their child - but NOT telling her that shes getting wound up about the wrong things ISN'T helpful!

Letting her believe that her child will definitely get DLA and that will turn into lifelong funding for insulin pump and CGM for her child is really not helpful - IF he gets a monitor and pump now.. thats like to be pretty temporary (unless they/he can fund it themselves!).

But. Simon makes a very good point. Tech is not everything. You have you learn the manual rules aswell. What do you think all us diabetics did pre pumps and cgm's? I could manage tomorrow without any tech.

When I was 3, back in the 70's, I was taught how to inject myself, with a huge silver metal injection that you had to put together and then unscrew every time, was stored in a big blue plastic container filled with white spirit stuff.

Not dissimilar. .

Rules are rules
I have 2 terminally I'll children, who have a lot of care needs, I was in the same boat....

Also don't force diabetes tech on him. It can be very overwhelming and you don't want him to resent it.

Hi op if you're still here, there is a fab group on Facebook for parents of children with Type One Diabetes.
You will find out lots of information on there. You're right about wanting a Dexcom, it's far better then Libre2, we self funded for 2 &1/2 years before getting funding.

I can't believe the amount of awful comments on this post. Yes children with diabetes alone?!? Will be entitled to DLA, the specialist nurse informs you of it while you're getting trained to care for your child.. and no not always short awards either. My son got a 14 year award with only a diagnosis letter as evidence. I applied 2 months after his diagnosis, but payments start from 3 months from diagnosis.

The OP is in shock, her child may have been fighting for their life in Diabteic ketoacidosis. It's a very stressful time and their whole world has been turned upside down.

Have you contacted Diabetes UK or JDRF? They are amazing. Also Facebook groups. You need external support.

If you apply on day one, how would you know what someone's needs really are? You'd also have people applying for short term conditions.

It's always been the case its not some new cost cutting measure that's been brought in .

They also like to swap needles to the cheap ones that hurt more so keep an eye on them!

3 months is nothing.

A friend waited 18 months for an assessment to put her in a not fit for work category with Universal Credit. Try living on less than £400 a month when you have a mortgage.

WTAF. People really are cunts huh.

You are talking about a different wait. OP isn’t talking about the wait to be assessed, she is talking about the wait to be eligible, different things.

How is this relevant?
Also DLA is different to universal credit .

OP. There has been some awful comments on here from people who don’t understand how your feeling but you have been given some good advice from people who do know. For your sons sake you need to calm down and help him to manage his condition as best you can, getting abusive won’t help anyone.

Exactly what I said on the last thread by the OP. Most consultants won’t authorise cgms and pumps straight off, not because they’re being mean, but because there needs to be an ability to manage diabetes well manually in case of technology failures. We regularly need to go back to finger pricking and injections for a variety of reasons, so that ability is vital. Throwing cash at it to skip the queue means you won’t build their same skills.

As for DLA being from 3 months, the form needs you to state in depth the impact on daily life. Until you’ve lived with the condition for a few months, you have no idea all the things you’re going to need to say. You’ve barely scratched the surface of living with it yet.

My daughter (12) gets higher rate DLA for having ‘just’ T1. It massively impacts all areas of her life, despite being very well controlled.

We are all (whole family as we’ve been doing it) experienced at the finger pricks and insulin jabs now

I’ll say this with the wisdom of one 18 months further down the line than you: having given injections and finger pricks for a week is not the same as being expedited at it.

His pump and CGM will fail. Often. And they won’t just fail at home. They’ll fail in the middle of a shopping centre, while he’s in a swimming pool, as he’s wandering round his big school alone, in the midst of a football match. My daughter’s pump fell off inside her wetsuit in the middle of a surfing lesson yesterday. Sometimes it happens when she’s dangerously high and full of ketones, sometimes when she’s terrifying low and having a seizure. During every single one of those scenarios, and a million more, you need to be able to click back into manual mode and manage it with injections and finger pricking.

Rushing to a pump and CGM isn’t advised because the medical experts know that you need to put the miles in with the manual kit to build actual proper experience which may save his life at some point.