DLA WAIT TIME THREAD 43

[Tracy37x]

DLA wait time thread 43

I actually got 3 hours 😂 he's currently snuggled with Daddy watching Simon as I have work at 4am 😵‍💫
I'm hoping they can give me some help, just a bit of understanding would be appreciated, coz for the last 6 months I've felt in limbo of not knowing what the heck I'm dealing with. Just knowing if other things are linked with his microdeletion, his rapid weight gain,his anger issues, the violence, the restlessness, the hyperactivity, the vacant moments, the constipation, the lack of iron, the vitamin D deficiencies, the asthma....the list goes on! Sorry to rant it's just a novelty having someone know how I feel x

I'm not throwing rubbish at anyone..
Just sick of people bringing up the priority stuff, I'm allowed an opinion am I not?
I don't "owe" an apology, if you don't agree with me that's fine, and if you read my message I said at the bottom I don't mean for it to come across as rude (hard to tell through text!).
And to add on, you don't know me, I already stated I was annoyed with the priority stuff coming up but if you want to assume me in general of being a frustrated person that is your judgement, however you'd be very wrong, I'm not going to judge anyone here because I don't know anyone, let alone based off a single message on an online forum.
Take from this what you will, I've said what I wanted to say and won't be replying to someone who thinks they know me.
Like I said let's all enjoy the weekend ahead😊

Oh I'm glad you got a good few hours to yourself! Even just a couple of hours makes a huge difference, oh thats an early start🙈 I sometimes don't get to sleep until that time, I suffer really bad with insomnia some nights, it's horrendous.
Honestly it's OK to have a rant and let it out! Its such a rare thing that it feels like nobody else understands then with dla you have to try and get it across but it makes you feel awful having to write it all down and make othees understand it, even just a little. They should be able to tell you what is likely linked to it but ours wouldn't tell us that her delays definitely linked to nir that it isn't, I don't know if thay is to cover themselves or because they aren't even sure themselves but I do hope they can help understand it more, have you been recommended to look at Unique? (rarechromo.org) at all? They have a Facebook page too, it's for people witch children who have microdeletions/microdeletions xxx

Few spelling mistakes from typing too fast but the bottom was meant to say microdeletions and microduplications*

I've had nothing, we are in the process of putting in a complaint to his paediatrician as she has basically just dumped him off & forgotten him. She filled out the wrong forms for the community paediatrician so he was declined by them then stated she couldn't see him as he wasn't in the catchment area so we were just left hanging. Lincoln community paediatric were fantastic though even though we weren't with them they gave me lots of advice on what to do & how to get the Sheffield referral etc
I don't use Facebook so I don't really have that for support I just scroll through Google looking for new information. Just hoping against hope that something is out there to make it all make sense x

No way! That's ridiculous, yeah definitely complain about that! We see the paediatrician every 6 months and have done since her diagnosis, she's 3 now.
I really hope you can get that sorted, as a paediatrician will be able to help with a lot of things, and even refer for other things if needed too, not doing their job wrong then fobbing him off, I'm glad to hear you have had support and advice from elsewhere though, hopefully you can get something sorted with the advice that they have given you, it will do your boy the world of good. Yeah I do the same on Google haha, they have that website though if you don't bother with Facebook, they're the ones who provide the little booklet/leaflets on the condition, I can't remember but we either got one from the paediatrician or geneticist but you can find them online too if you haven't had one given to you and they go through the main things you see with the condition then what some patients have so had with it so it gives an idea of what issues/behaviours etc it can be associated with xxx

It's gonna be a long day,I am currently on the Unique site. I have signed up, I've downloaded the document for his microdeletion. Some of the bits I've read is like reading about him!
I honestly can't thank you enough, you've been more help than anyone. From the bottom of my heart thank you x

No worries at all, I'm glad to have helped, even if just a little and I really hope you get even more answers from the geneticist and your complaint gets seen to properly and he gets a new, more understanding paediatrician too! Keep fighting for the support you know that he deserves and needs!❤️
I have to thank you too, I've never even spoke to anyone else online or even in person who has a child with a similar issue to my daughter! Her deletion is on chromosome 16, it really is a relief to have someone who understands it even if not fully themselves but in the same position and to listen and talk too, so thank you too! Xxx

@Claire11031982 @BlueyMama this is amazing to see! Love that forums like this can bring people together for help and advice….sometimes it’s tough with healthcare professionals to get that advice and support so we look to others for it and it’s just heartwarming to see.
I knew nothing of my sons condition when we found out but after some digging found a few different things helped outside of the nhs/professionals…and sometimes they’ve been more helpful!
we may all be here for different reasons but the end goal is the same….what’s necessary for our children 💖

Does anybody know if they work over the weekend?

My point is that no one is made a priority for no reason, I waited nearly 2 months before someone said about being made priority. I didn’t decide it on my own. It was my sons early help worker that suggested it. I’ve sat behind my phone feeling like an utter failure reading people moaning about priority. I wish I wasn’t waiting for DLA at all I wish my child was healthy, I wish my child could do all the things my eldest has done, I wish my child could learn to ride a bike, get a job when he is older, get his own car but he will be fully blind by then and it’s the NHS fault why he lost his sight. Stop being so angry at other people and start supporting them, I’ve spoken to a couple of people in private message and I even feel bad for being made a priority. Some parents have it harder than others but we are all struggling financially, emotionally and physically. Have a bit more compassion for people because there’s parents on here that really are struggling and do not want to be judged

I think for some the heat of the moment runs away with us and its the kids that get forgotten about. And dont ever feel bad for asking, that is why its their and not everyone gets accepted. Its not a case of whose child is more ill/disabled, its my child needs xyz daily for their needs and without it, illness/safety is at higher risk.
@ADT13 Depending on priority some are done within 1 (working) day.

99% of this forum is absolutely amazing, I've not met anyone with the same kind of syndrome as my boy so @BlueyMama having the same knowledge was amazing. The site she directed me too was wonderful, she has provided me with more in a few hours than his paediatrician did in months!
We're all in the same boat, some more severe than others but end of it we all want wants best for our children. I love the support that is shown x

I really hope so 🙏

I think some do OT, but it's not regular working hours, IYKWIM?

I really hope so too 🤞🏼

Everyone is entitled to their own opinion, nobody should be shutting each other down, this is a supportive thread, people get frustrated, totally allowed, the DM's should be scanning through new claims and making a decision their and then who becomes priority and who dosnt, saves people having to phone up to ask. At the end of the day regardless of who needs priority and who dosnt we are all waiting a hell of a long time the system is a joke but thats because a lot of people are makimg new claims Congratulations on all awards recently 👏 x

Ladies......i need help. Iv just recieved letter to move over to universal credits 🤦🏻‍♀️. I claim carers allowance. What happens with that? Do i have to close that claim or what? Also do you really go 5 weeks without payment? (I dont want an advance) xx

@Fee89, have you ever found the Money Matters part of MN? There are at least 2 TC to UC threads in that part which are REALLY helpful.

If you move to UC you will still recieve carers allowence but it will be deducted in full from UC but I didn't mind this as I was receiving weekly payments so helped out a bit more.

Thanks. Yeah i would rather keep that weekly amount. It helps if the kids need new shoes for school or your 12 year old non-stop growing and needing new trousers every month 🤦🏻‍♀️. The boy needs to slow down so i can keep up 😂

@Fee89 i got my notice recently, im actually much better off on UC than TC but i was nervous. I got paid 2 weekly payments from TC whilst waiting for UC which was another 3 weeks without being paid. Also, just to warn you. I am
battling tax credits atm to pay me severe disability child tax credit. I had to move before i got my dla award for my youngest daughter.

I informed UC but not TC as i was with UC. After weeks and weeks of battles with UC, im now battling TC to get my back pay from april 2023 - november 2023. Their argument is that i didnt tell them within one month.

My argument is i was no longer with TC and didnt know the element existed. It’s not my fault the automated system between DLA and HMRC failed and i received my MN. I informed TC as soon as DWP called me after two complaint forms and MR to UC to tell me it’s TC to backdate. Im now on a MR with TC.

I started this journey on 23/04/2023 with my youngest and were still not sorted and im still fighting for what is owed. If you win your MR with DLA, please inform TC straight away aswell as UC. I dont want anyone on this long journey and fight i have been on between DLA, UC and TC 😩 im also on week 12 with my oldest for DLA. I didnt know DLA even existed until 14 months ago and struggled my whole adult life with my childrens additional needs and im a single parent (3 daughters, 2 with extra needs)

Sorry for the long post, but if i can help even one person avoid the pain of a 7 month DLA wait, 2 month UC battle and now TC battle which will probably end at tribunal i hope the post helps someone.

Blimey!!!!! To be fair it was only recent that i read on facebook about this. Id never of known you would have to let tax credits know if your already moved to uc. My thinking would be well that claim is closed? Im hoping her MR is done before i need to move over but thats wishful thinking 😬. I think this is what scares people moving over is not enough has been explained to people still on old system. I hope you win and fight lack of communication and no information. Your post will help alot of people that are moving over and still awaiting dla. Thank you x

Just a quick question, if you are awarded and receive backpay is the first official payment roughly 4 weeks from this date ?

I can’t even get a EHCP because my son is in no education at all. It’s so so stressful and I understand what you are going through completely. And to loose the last little bit of independence or “break” is soul destroying. I never in a million years I would have to struggle this much bringing up my children. My eldest is starting to resent my 5yr old because she now has to give up her acting and musical theatre because I just can’t afford it. I had to sell my car to pay rent, I waited for so long to be asked to put on priority and I really wished I didn’t. I wouldn’t wish my worst enemy to be in the situation I’m in now. Stay strong also and sending you and your family love and all the best xx