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.

Not helpful, but they don't award money based on diagnosis.
They base it on a variety of questions such as how the condition affects the person's life, what their care needs are, etc.
An actual diagnosis might help a case but isn't what a case is founded on. And it's a wait time of months because that's how long it takes for the case to be looked at by the people who make the decisions. The wait times are long, and can take appeals.

My DD got the libre2 prescribed about 3 months after diagnosis, and before the NICE change. Children tend to get the tech, and we are in the worst area for prescribing it. Has the specialist team said they won't prescribe at all?

Sorry, that's not me defended the way it's ran. And I do think alot could be improved with the service.
Just the information I know from applying for my own son.

To be honest Op my dp recently qualified for PIP from application to actually getting the money was 30 weeks.

it was back dates, but obviously that didn’t help in the 30 weeks waiting.

and it’s based on the impact. Not a diagnosis. Not even really, how much money it costs you.

Its a really shit system.

It's just rule,s I'm afraid but there maybe scope for argument because your son has had to have the condition for three months ,and just because he was diagnosed last week he must have had it for a tome prior to diagnosis, but tbh you should probably apply now because you can be waiting upwards of 12 weeks for a decision.

DLA isn’t about diagnosis, its about symptoms etc, no one has any ideas why they have certain rules, most of their rules are insane, its the same with PIP.

Does he actually need a pump? Generally people don’t have a pump unless they are a young child, or their diabetes is mismanaged through disabilitiy, ill health, brittleness etc. Its also a better idea to know how to manage your health manually before you start relying on tech, relying heavily on tech and then having go to manual is much harder, trust me on that.

Talk to his specialist team - the "needed" tech is provided. They generally need to get people stable before prescribing optional tech. Type 1 diabetes existed before these and many people use normal insulin out of choice, don't rush to use the new tech because it has pluses and minuses. Dla takes a few months when you apply, it's not condition specific it's about needs

Initial diagnosis doesn't give you the full picture of how a condition can affect daily living and care - but three months in, it's more accurate. It also excludes short lived but massively inconvenient things that can get better which aren't within the remit of disability benefits.

After 12 weeks, you'll be able to give a more accurate account of what needs he has over and above somebody else his age or somebody else with T1 who has more stable levels, awareness of hypos, etc - which might mean being awarded a higher payment.

I don't know the answer but I do know it's not a new rule. We applied for DLA (now PIP) for our DD in 1995 and that was the rule then.

You don’t have to fund it yourselves.
My son is also a type 1 and the monitor and sensors are provided free. He may not need a pump, they don’t work out best for everybody.
I would suggest if he was only diagnosed last week you give it a while to see how he gets on without one first.
I remember when my son was diagnosed at age 16 that we went into a blind panic to start with but honestly once you get your head round it it’s manageable, not great but certainly manageable. He went away to uni on his own and coped far better than we thought with no real disasters.
That was over 20 years ago, never claimed DLA either but depends how old your son is.

They don’t normally advise a pump at the start, they like you to be out of the honeymoon phase as it’s so unpredictable up there that point. We got sensors funded but it took about 5/6 weeks as they wanted us to get used to managing it ourselves without the the tech first. Dexcom is now fully funded on the nhs for children

Your sons GP should be able to contact the CCG to get permission to prescribe the Freestyle Libre2 sensor and reader.

This is what one of my GPs did for me before the covid pandemic , hopefully you'll get the libre2 sensors prescribed on the NHS, like I do.

Yeah I was going to say this our hospital wanted us to learn the manual way just in case the tech (pumps & cgm) stop working, pens and finger tests are free on prescription but you will get the tech just takes time as it’s lots and lots of training

Just because you have a health condition or diagnosis doesn’t automatically make you entitled for DLA or PIP. It’s about how that condition affects you and for children, how much additional help they require to another child their age without that condition. If you have a condition but can live a fairly normal life with little help, you won’t get it.

No one pays for a pump. You wait. He'll get one but needs to let his body settle. Pumps are not a magic bullet. If only. Move hospitals to one where they are big on pump therapy.

I didn't know this was a rule, but a diagnosis has never been required for DLA so it makes no sense anyway.

You might not even get it. Just because you've got a diagnosis it doesn't really matter. It goes on care needs. How much supervision does he require? How much care does he need? How much support does he need outside of the home. Ie school? It's really about what he can and can't do.

Oh the three months you have to be disabled for before you can claim...

THATS upsetting you?

I reported a change in circumstances (a huge one that massively affects my independence) FOURTEEN MONTHS AGO.

Still haven't had my claim reviewed. Keep getting texts telling me they have my claim and will look at it.

The 'three months' thing, plus the 'must be expected to last 6 months/or be terminal' thing - they're there for a reason - to ensure people understand how their condition actually affects them long term (ie, for a few years) and to stop people claiming for temporary stuff.

The rest of it is utter incompetence.

Keep in mind, its not the DX that gets you a claim, it is the way that DX affects day to day life, as set out by the criteria on their forms. For diabetes, thats going to be how much care your child needs from another person (not the cost of the pump, though you can use it for that if awarded).

I'd teach them to do it without a pump first unless they really are too little, even if you do go for a pump later on, theres a good chance at some point you or they won't be able to afford it, so better to learn how to calculate and manage asap!

I think what OP is saying is that even after you've applied and been told that you are entitled and they will pay you still have to wait 3 months for a payment. That's what they do with Limited Capacity to Work and yeah it makes no sense. They've already told you you are entitled and accepted so why make you wait? In my case I'd lived with the condition months before I'd even applied and hospital stays and consultant opinions were evidenced months prior to me applying so it was never a case of seeing if I can manage without the benefit after just being diagnosed. It's just a flat out rule you wait 3 months for payment after you are awarded.

A week is no time at all, OP. It's a shock, and my DD was very ill at diagnosis, so there's that to deal with too. She was still in hospital, on fixed insulin doses and checking ketones with every dose after a week. We felt we knew nothing at all. But she had her "diabetes school" and we all picked it up.

@Sunnyqueen my daughter has been on DLA for years, we’ve always been given the letter stating which award and then given the money straight away, I’ve never heard of waiting 3 months for payment for DLA

You have to wait for 3 months after diagnosis before you can apply.

I think it's the fact you have to have a condition or problem classes as disability for 3 months before you can claim and it must be expected to last for over 6 months.

So as T1 is instant and lifelong she is cross.

The issue seems to be that she's been told extortionate prices for tech that's needed and if it's needed it should be provided by the nhs.

Same here for ds dla and then pip.

Lots of people - children included do not meet the criteria for DLA by having diabetes.
DLA for children is harder and harder to get, and a manageable health condition doesn't always qualify.
Obviously if your DC has unstable diabetes and needs a lot of support they may well qualified, but DLA for a child is calculated on what help they need, not on the diagnosis itself.
Reports will be asked for from school/Dr etc asking what intervention is needed from a carer.....and school will have to be clear in how much help they are giving in the 9-3.30 day.
It's a minefield for parents of disabled children at the best of times, the system fights all the way and typically the first application is a no.
Start keeping a daily & weekly diary of what your child needs, but until 3 months has passed it won't be an accurate picture as things may get easier quickly once you are all in the rhythm of things with diabetes.