DLA WAIT TIME THREAD 37

[MLW92]

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Unfortunately there’s been no specifications on what else they need other than they know my daughters last CT scan showed some “floaters” in her lungs so they want evidence that the cancer has spread, but that’s not something I can give them as we don’t even know if it has until she’s well enough to undergo surgery to take biopsies from these “floaters” in her lungs 🤷🏻‍♀️ in my opinion, regardless whether it has spread or not she is still facing childhood cancer and her difficulties with everyday life are extreme , she’s been potty trained since she was 2 and she’s going to be 5 in May but is back in nappies, she’s not able to walk more than 5 meters without complaining of pain in her legs and that’s without all her medicines, aches, pains, tube feeding and night sweats amongst other things and she has a Hickman line in her chest which means she can’t bath or shower 🤷🏻‍♀️ I’m honestly at my wits end with DLA policies and decision makers x

@Taffylass72

that’s really unfair. It’s said that they base it on symptoms not diagnoses but I’m not convinced that’s true. I wonder if they’re looking for evidence to up you from MRC to HRC or HRM? Perhaps that’s what the hold up is? I really hope that’s the case. Have you asked to speak to a manager? I think in your situation it would be fair to.

I can’t even believe what I’ve just read ☹️❤️ like you’re not going through enough right now, the way they are treating you is absolutely horrific asking you to prove the cancer has spread when you don’t even have the means to know that yourself. I’m so sorry to hear that and I agree with the above comment - I would take this further. Completely unacceptable. This is meant to be here to help people not put through you more trauma xxx

They’ve said they are waiting to generate an NI number for my son because I don’t claim child benefit. They sent off for an NI no. on the 19th March! Why they waited 4 months to request an NI number I don’t understand ☹️. Then once that’s completed it will go back into a queue to be seen by a dm…and that’s another couple of weeks. Like we don’t have enough to deal with already. Just desperately want a decision so I can get on with my life.

With the evidence you have sent off I really don’t think you will be getting a decline, I think they are assessing what kind of rate to award you so maybe they want that extra bit of evidence so you can get that higher rate. Well I hope that’s the reason, honestly I don’t know with these dms. They award some people HRC with no evidence and decline people with wods of evidence so who knows. Think positive and hopefully will get a positive outcome.xxx

I’m so sorry this really just broke my heart💔🙁. I really really hope she gets the cure she needs. They really don’t deserve this. 💐

Good luck everyone calling today

Oh gosh it seems very quiet this morning. Unsure if thats good or not 😬

14/12/23 called this morning and still with a DM but no decision? And no notes requesting further evidence so far 🤞 I’m so done waiting 🙄

I’m the same date, calling now to see if there is any update

I’ve been reading your posts. 🤞for you I really hope you have a decision and a good one x

Thanks hopefully we both get a decision today. The TL I spoke to a few days ago said they should only be with a DM for a day or two before a decision is made

Thank you so much! X

im not going to bother wasting my time in phoning or anything anymore, I told the lady I spoke to yesterday that I also have no more evidence to give so if they want to decline they can and I’ll just appeal , the little time I do have I’m just going to focus that on my other two children now!

good luck to everyone today and hopefully you’re all not waiting too long ❤️

Nothing just got the wait for 20 weeks

Mine has been with the DM since the 25th march? So either they lied and it wasn’t with a DM or it’s taking forever? However I don’t know how to call without using the 512? And I’ve been told that the longer way to call is where you get more detail? Do you happen to know the other way not using 512 lol

523

Anyone know if they ever call from a London number? Or is it usually withheld.

Did the OT write a report after their assessment (they should have done)? Have you sent that in?

It can take longer when they contact other people (ie school or HCP) for evidence.

Spoke with the 'lovely' Karen this morning. I never got to say good morning or what I was ringing for... just straight away wanting last names and NIno. Then told me off as I gave mine and not my daughters (not sure how I'm meant to know a 3.5yr old NIno)

Regardless, she just said no news, I'm 15 weeks and it's around 16 weeks to hear.

When I said, shall I ring next week she immediately said, 'well no, I would just wait for the letter in the post, there's no need to ring again' 🤣

Very abrupt telephone manner.

I think Karen needs a holiday... ASAP!

She said there are no notes on the system and they haven’t requested any further evidence? So I don’t know what to think lol x

It’s so quiet on here today has anyone been awarded

18/12
Im gonna wait until end of next week to phone, I only phoned on Tuesday and apparently it was with a DM then, but who knows because I was told that weeks ago..

I’m ringing again today Iv been told so many different things I don’t no what to belive off them x

How did you get on? Any luck?

Nope just told it’s with a fm and to wait until it hits 20 weeks