Page 17 | DLA wait times part 16 (2023)

Are your children’s vaccines up to date?

Shibdib45 · 21/10/2023 13:23

We are 12/6 went to decision maker Monday .. really hoping for good news next week but I’m losing hope xx

Melliee · 21/10/2023 13:29

hi
well the thing is I haven’t heard anything from them no letters no texts nothing and when I did phone in they actually lost the letter and even was like “oh you might have to do everything again” but luckily they found the letter…
but I was in the dark until I phoned up so fingers crossed for us all! Will keep you informed if anything else pops up 👍

RainbowZebraWarrior · 21/10/2023 13:40

MKAW222 · 21/10/2023 13:15

I am starting to panic!
My 12 year old has hypermobility that causes her daily pain and difficulty with sitting and fine motor including writing. She takes a lot longer to walk anywhere than her siblings or her friends and gets tired very easily. She scored 10/10 on the Beighton scale.
She also has a rare bleeding disorder (hypodysfibrinogenemia) and has very heavy nosebleeds and easy bruising. She is at risk from internal bleeding following even a minor injury so requires lots of supervision. She has also recently started her periods which are ridiculously heavy for a child of her age. The bleeding causes anaemia and fatigue/dizziness.
She has bleeds during the night requiring a complete change of nightwear and bedding about 12 times a month. I have to check her through the night to make sure she isn't bleeding in her sleep.
I applied for DLA (scan date early July) and sent letters from consultants, etc. I am panicking that she will be declined. Has anyone had anything similar who can give me an idea of whether she stands a chance of being accepted? Sorry if this is in the wrong place (I'm new here) and thank you if you've made it this far

Sorry I can't say whether your claim is likely to be accepted as it's largely down to how it affects your daughter.

However, I have hypermobile Ehlers-Danlos Syndrome and so does my daughter. I get PIP for mine, and have a DLA claim in for my daughter. We both have other issues too. Just wanted to mention that it may be worth looking into whether your DD also has hypermobile Ehlers-Danlos Syndrome. The Beighton scale is used as part of the diagnosis here, but there are other factors too. Google Hypermobile Ehlers-Danlos Syndrome diagnostic criteria if you want to look into it further.

RainbowZebraWarrior · 21/10/2023 13:43

RainbowZebraWarrior · 21/10/2023 13:40

Sorry I can't say whether your claim is likely to be accepted as it's largely down to how it affects your daughter.

However, I have hypermobile Ehlers-Danlos Syndrome and so does my daughter. I get PIP for mine, and have a DLA claim in for my daughter. We both have other issues too. Just wanted to mention that it may be worth looking into whether your DD also has hypermobile Ehlers-Danlos Syndrome. The Beighton scale is used as part of the diagnosis here, but there are other factors too. Google Hypermobile Ehlers-Danlos Syndrome diagnostic criteria if you want to look into it further.

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Also meant to add that my DD is 12 next month and also has heavy periods. She was diagnosed with iron deficiency Anaemia in July and then B12 deficiency/ Pernicious Anaemia in September. She also has Autoimmune Hypothyroiditis (I asked the Paed to do bloods due to her constant fatigue) Seems there can be a link there with the Hypermobility. Autism is also a common co-morbidity with Hypermobility. (The gift that keeps on giving!)

Mumto2sengirlsxx · 21/10/2023 13:59

@MKAW222 no idea but I'm currently waiting for a decision on my daughters claim for hypermobility (she scored 10 out of 10 on Beighton to) and has low mobility in her hands, aswell as no core strength or bladder control, also on a waiting list for ADHD diagnosis im concerned she will be declined and this long wait makes it harder! Xx

Muva306 · 21/10/2023 14:08

@Caitlyn59 yes needs to be done within a month. I was declined around 30th of August and got my MR back on 22nd Sept and then called on 28th to make sure they knew they had it and they confirmed it was scanned same day as received

Mummytodo · 21/10/2023 14:16

Does anyone know if NatWest shows incoming payments?

MKAW222 · 21/10/2023 14:17

Thank you so much for replying. It was when she was having a genetic test for possible EDS that they discovered her bleeding disorder dodgy gene. They ruled out EDS. Wishing you all the very best x

Mummyrach13 · 21/10/2023 14:29

@Mummytodo im NatWest and they don’t have that facility it always updates between 2-2.30am where as some banks show upcoming payments before or after midnight x

Mummytodo · 21/10/2023 14:40

Thank you, I keep checking cus 15/6 but nothing yet lol

Crazywaitingtimes · 21/10/2023 14:58

Hope you dont have to wait too long on phone 🤞 yours too is with DM
This waiting is sending everyone to the brink of madness, i've never known anything like it🤨

Mummyrach13 · 21/10/2023 15:08

Hopefully you hear something this week x

Leighs2gorgeousboys · 21/10/2023 15:09

Fingers firmly crossed that we hear shortly lovely, this waiting has been horrific, sending us all doo lally x

Lovely17 · 21/10/2023 16:17

@Leighs2gorgeousboys tell me about it. I tried not thinking about it all day but I find myself here typing this message cos I literally can’t keep away from this thread 🤣 I’m hoping I have a decision by next Friday 🤞 xx

Mumto2sengirlsxx · 21/10/2023 16:21

I'm hoping I'm at least with a dm some point next week. If we are late on renewals we have to start claims again but they are okay to put 15 weeks on the letter then tell us all to wait 18-20 weeks 🙄 my eldest daughters was done in 13 weeks the start of this year so this waiting is defo causing me a lot more anxiety this time round xxx

ChelseaME · 21/10/2023 16:54

Hi guys just wondering if anyone can help? Once updating universal credit saying your child is receiving dla, do you know if Uc will backdate the child disabled element to the start of the award date or just to the date you told them?

zoeybrooks45 · 21/10/2023 17:10

ChelseaME · 21/10/2023 16:54

Hi guys just wondering if anyone can help? Once updating universal credit saying your child is receiving dla, do you know if Uc will backdate the child disabled element to the start of the award date or just to the date you told them?

They backdate both disabled child element and careers elements. But once you make the change of circumstances you need to write a note in journal stating you would like it backdated from said award date. They will not automatically backdate you.

ChelseaME · 21/10/2023 17:19

thanks for getting back to me, I asked would it be backdated to the award date do you think that will be ok, they take bloody ages to answer you though

Muva306 · 21/10/2023 17:32

@MKAW222 we had genetics testing dong in August. How long did you wait for the results? We were told around 9 months

Mummyrach13 · 21/10/2023 17:34

@Lovely17 i think the weekends are the worst and so long as in the week there’s usually some updates 😂 hope a few of us are with DMs next week. X

RMNofTikTok · 21/10/2023 18:30

I had a phone call yesterday from DLA and my heart was in my mouth... until they informed me it was about reasonable adjustments submitting evidence 😂

Scan date 28/06
First text 5/09
Second text 25/09

It seems close... but also far away!

I've posted LOs autism report, now I have an email should I email it too? I could also email them her pupil passport and communication proving she's in assessment for an EHCP?

RMNofTikTok · 21/10/2023 18:31

MKAW222 · 21/10/2023 14:17

Thank you so much for replying. It was when she was having a genetic test for possible EDS that they discovered her bleeding disorder dodgy gene. They ruled out EDS. Wishing you all the very best x

Did they make you aware there's no genetic test for hEDS?

Lovely17 · 21/10/2023 19:10

@Mummyrach13 yeh, today has been the longest day ever, probs cos my lo had me up at 4:30 😭 just hope it hurries up, they can’t keep us waiting for much longer x

PinkMoscatoLover · 21/10/2023 19:44

ChelseaME · 21/10/2023 17:19

thanks for getting back to me, I asked would it be backdated to the award date do you think that will be ok, they take bloody ages to answer you though

Yep they backdate to the award date. You just need to let them know that the reason you’re telling them outside of your assessment period is because you’ve only just found out DC was awarded

LGR004 · 21/10/2023 19:51

Hi @zoeybrooks45 sorry to jump on the message , my scan date is 29/06 awaiting the decision! Just wondered if my LO gets awarded and I ask for the back date on UC and they back date it is it to the date he was awarded when I find out from DLA or is it awarded back from the scan date of DLA? Hope that makes sense 😂 x