“Rock bottom became the solid foundation on which I rebuilt my life.”

Busy_Mee1

Hi Wannabe. I like most others have been really shocked that you don't get the DLA after reading on here the daily struggles you have to manage your little one's health condition. I looked up the entitlement conditions for Child DLA out of interest and it all hinges around whether you need to provide more care for your child than another child of the same age. It is not based on diagnosis or the medical condition.

I think you definitely do provide more care than is usual for a child of this age and it comes out loud and clear in this diary. I wondered whether it would be worth constructing a diary covering the last few months showing what you have to do to care for your LO, which is more than you would for another child of the same age.

Things like waking in the night to care for her, how many times she has been off school, the extra care provided by DD in school that you had to sort out, the middle of the night trip to the hospital and the fact that she is so clingy at the moment. I thought that it might be useful for your appeal to demonstrate how much care you are providing.

I think sometimes these claims fail because of the way the information is presented and thought if you could get across how much care you are providing as you do in this diary then it could be helpful.

Sorry if you know all this, but I just feel so frustrated for you

WannabeFree

Thank you BusyMee I think a lot is to do with how sometimes she is well but even then she still requires more care. A diary is a good idea. I do keep one but I hadn't thought of keeping it for the 'evidence' that's a good idea. Thank you

WannabeFree

Morning

Another day, another out of hours appointment over night. Think the smalls are getting as fed up as I am think I should just give up on trying to budget or label the bank account 'taxi and pharmacy' yawn.

Just packing the older two off to school then have a 'normal' GP appointment this morning for myself that I can't cancel again :rotfl: although just for something simple at least!

Hope you all have a good day

x

teafor2

Oh no, not again. I bet you're all shattered

Is DD that bad that you have to get a taxi and take her or is it because you don't like being a 'nuisance' and therefore won't phone an ambulance/out of hours doctor. I hope that comes across as it's intended.

A lot of people wouldn't think twice about ringing and asking for somebody to come to them and yet you're on your own messing around phoning taxis in the middle of the night and getting 2 other little ones up and ready as well as dealing with DD. It seems wrong to me. If it were a one off I could understand but it's obviously not. Not to mention the impact it's having on your finances. What would you do if you didn't have the money for all this travel?

Hope you manage to catch up on some sleep today and the older 2 aren't too tired at school. Take it easy and don't be pushing yourself to do things that can wait. xx

Oh and BusyMee's diary idea is spot on. Start it today with the first entry being overnight dash to hospital with 3 children.

WannabeFree

We use an ambulance when we have no other option Tea, if I can get a taxi then I do. We see how much pressure they have on them, but we do use it if there's no other option. Out of hours GP doesn't do home visits and the community team only home visit till 8pm after that they tell you where to go (Out of hours or A&E/ambulance etc)

If I couldn't have got a taxi we'd have had to have gone to a&e by ambulance. It makes youngest really upset though so another reason I try to avoid it if possible. We are actually quicker in a taxi than an ambulance most of the time. We made it in a taxi at the weekend quicker than the ambulance had even reached our house (I did call them back and tell them it wasn't needed before anyone thinks I wasted their time)

Plus on a normal week there isn't this many. In the summer last year she did really well and went weeks without an out of hours/a&e visit but this is where DLA went. All the appointments etc add up without the extra ones when she's unwell

x

teafor2

Yes, I fully understand about a taxi being quicker than an ambulance. Mine took 40 minutes to arrive, it had to come from Halifax, and I was what they class a No. 1 priority. Mind you it probably took a good 10 minutes to get over all the road humps we have around here :mad:

It does seem to be a case of having to fend for yourself if anything happens out of hours these days. It's just the thought of you doing all that on your own that makes me

As long as DD's OK that's the main thing but the sooner your DLA hearing comes through the better. I defy anybody not to think she's entitled to it. xx

enthusiasticsaver

I think busymee has a great idea there WF. Keeping a note of additional costs and number of GP visits, out of hours, hospital trips would give you some evidence to present at the hearing plus of course let them see how your DDs health prevents you from working particularly over the winter when there are so many bugs around. Not long until you get your bed

DrSpendLittle

Great ideas above on keeping a cost / time / implications diary. The latter is important especially the compounding effect it is having on you and your other children. All the trips add up over time and financially, you're taking a big hit.

In your diary, I wonder if its worth giving some context to your youngest's 'illness spends', relative to your income and your other spends on a weekly or monthly basis. This will allow you to show how, proportionally, the costs associated with managing youngest's illness are significant when compared to other essential daily living costs. I wouldn't be surprised if the money you spend on taxis, food at hospital etc account for 50% - 60% - 70% of your spends in any given week. The fact this fluctuates so much is also important as it doesn't allow you to plan, like someone with a fluctuating income struggles to make a budget. I think if you could show that, in any given week, you spend less on groceries than you do on taxis and visits to the hospital (and all costs associated with this like food and water for you and the other two), it will really drive home the financial argument for you deserving DLA.

It frustrates me greatly that the system is set up in a way that disadvantages you like this. You deserve better.

I'm routing for you. Fingers crossed a hearing / tribunal will enable you to present a different perspective on the situation, which challenges their decision not to award you the support.

WannabeFree

Thank you, I do keep a very detailed diary so I will take copies of this to use.

Feeling fed up today Trying to battle on though - won't give into it!

Have done my cleaning, just need to do the ironing and floors.

Dinner is ready to go on when the smalls get home and youngest has finally got up and had lunch, the good news is she does seem a little better now Hoping for some better answers at tomorrows appointment. Also hoping it's the last one for at least a week to let the budget's recover a little DD1 want's to go for coffee over the weekend too for her birthday.

Enough moaning

x

EssexHebridean

WF - one thing which may be a positive with using an ambulance over calling a taxi is that the ambulance service will feed back if they see a situation where someone is not getting the support they are due or need - so if they keep seeing youngest appearing on their records it's possible that they may be able to put in a request for additional help for you which will have more "weight" coming from the Ambulance Service than from you, if you see what I mean?

I appreciate it's not easy when it upsets her, and obviously if the situation is really serious then a (quicker) taxi might be a better option - but it worries me that one day you will get a taxi driver refusing to take you because of her condition, then you'll end up waiting even longer. Just something that's worth a bit of thought, anyway.

Bless DD1 wanting to go for "coffee" for her birthday - that's so sweet!

The diary is definitely a great idea too!