Type 1 Diabetes and DLA

[FrogsHiccups]

My 2 year old was diagnosed as Type 1 diabetic 9 months ago and as a result he’s now in receipt of DLA. At the moment we just put it in to a savings account and don’t really do anything with it. So my question is what do you use it for?
We don’t really want to use it for day to day things like nursery fees and clothes as we’d have to pay for these whether he was diabetic or not.
He’s on a CGM and about to have an insulin pump fitted, so we’ll use it to get him a phone so we can keep track of all of that in one place. But we don’t really know what else?
Will he need additional things when he’s older that won’t be NHS funded and that’s when it’ll come in to it’s own?
I’d love to hear any experiences from parents of Type 1 or adults with Type 1.
Thanks!

We do the same and put it into savings for them. I imagine it's much harder to get things funded as an adult.

I don’t know anyone with just type 1 (haha!) that gets pip…even those with complications can’t get it and I speak as a T1 adult who has both T1 and CFS who has days where I can barely function. So my advice would be to spend it if you have to, but save it if you can.

We did exactly what you're doing, but invested it rather than just put it in a savings account. My two are adults now, and it's given them a nice little bit of savings – they're hoping to do some travelling… one day!

I'm amazed that you get DLA! I've been type 1 for 30 years and never advised or considered applying for it. I used to self fund my cgm and my consultant never suggested applying. I guess I'm a bit jealous?!
Were you told to apply by the consultant? It sounds like you're not the only one so now I'm even more !

Unless it’s changed you only get DLA until 16

I was a child when diagnosed. My parents didn't claim but maybe things have changed.

Anyway. I would save it for your child. I really can't think of anything a child would need to spend it on related to diabetes.

Whether diabetics consider themselves disabled or not (my DCs don't), the condition is covered by the Equality Act 2010. So yes, you can get DLA, but usually only at the lower rate and as rosie1959 says only until the DCs are 16.

You can't usually get PIP as an adult.

I assume the reasoning is that children might require outside assistance with their daily care whereas by the time you are an adult you are expected to be able to cope on your own!

Thanks all. It’s all food for thought.

My concern with saving it for him to give him when he’s 16/18/21 is if any other children we have aren’t type 1 (there’s no one else type 1 on either side of the family) then there might be some resentment there. A bit of ‘why does he get all that money just because he’s diabetic’, IYSWIM.

Yes, we were advised to apply for DLA by the paediatric diabetic team and advised you only get DLA until 16. There was no mention whether or not he would PIP when he is an adult or not (I suppose that’s out of their remit).

The answer to that would be that a small amount of savings in no way compensates for a life with Type I diabetes…

I don't mean that to sound negative, my 2 don't let it stop them doing anything they want to do, but it does have an impact on spontaneity, eating out, sleep patterns, travel preparations and numerous other aspects of daily life that most of us take for granted.

So - the extra things you don't think about but which add up. We're not in the UK and sensors aren't funded yet here (NZ) so that's what I use the equivalent here for for my T1 daughter.

In addition, there are all sorts of small things that we end up needing to buy (or wanting to buy just because having a scanner or a pump with a skin on it that looks cool is a bit more fun when you're 12!).

• Patches to keep sensors on.
• Bands to keep a pump in (or alternative attachment method).
• Depending on how you manage his diabetes, there may be more diabetes-friendly versions that cost a lot more than standard products (e.g. ice cream).
• Changes in meals e.g. fewer, more protein (and yes, of course some people choose to eat exactly as they did before, but for us eating lower-carb makes it much easier to keep BGL in range / stable)
• Dextrose tablets to treat lows.

• Juice to treat lows.
• Sweets to treat lows.

• Sensible bag to carry kit around in.

• Frio wallet for travelling
• skin wipes
• rolls of rocktape

and so on and so on...

Ours goes on living expenses. I have 2 type 1 DC. it pays their phones, travel, WiFi and anything else they need.

My understanding was that it was intended to meet additional costs associated with their diabetes. Not for savings. But then it was 12 years ago we applied. So who knows.

Ours goes on anything we have to buy that we wouldn’t have had to - like LostintheColonies’ list, plus his dexcom sensors. The rest is saved. Assuming we get DLA till he’s 16, he’ll have enough to fund sensors till he’s 23. Let’s hope he picks a nice high-paying career and can fund his own after that!

Not being able to get PIP as an adult is an absolute disgrace. Some diabetic adults don't need it. Some do. The whole pip thing was bought in on the sly, cleverly. Makes me so mad.

We were never told about DLA. When I think about my poor mum with a diabetic 1 year old dd, no DLA ever mentioned throughout my whole childhood, it makes my blood boil.

I have two type 1's and get it. It funds sensors which are a whopping £160 a month each so £320, phone contracts for the phones to control sensors £50 for both, dextrose tablets - can get through 2 big 24 packs a month easily so £30 minimum, extra snacks such as carb free meats and cheese I wouldn't of otherwise brought, better food alternatives that don't rocket their blood sugars, lucozade drinks for sports clubs, mini orange juices for before pe - prob another £100-150 monthly to my food shop, covers loss of earnings when I've had to leave work to collect them with a failed cannula, high or low blood sugar etc (which happens often tbh with two) and also the fact I work term time only because finding holiday camps that cater type1's is so difficult. Then there's other items such as backpacks, cases for insulin, pump belts, frills ice packs for holidays, various tapes etc to keep the sensors on which never works! I am sure there are a few more things I can't think off off the top of my head!

He's only very young at the moment and as he grows older you may find there are additional expenses so I would keep it to one side for now but...
You know when you go to the hospital for a check up and you need to pay for parking? Use a bit of his DLA to pay for it. Think of it in that it's to cover additional expenses that other children don't have. You know that day you have to take off work unpaid as you are sitting in hospital with your son etc etc.

Just wondering why several of you are saying you use it for CGMs - are you not getting them on NHS prescription? If not, why not?
I thought children with type 1 would be eligible!