Dla wait times part 14

[Tiredmamma74]

New thread as others are full

Congratulations!! So pleased for you x

Are you coc or new claim?

I’m scan date 31/05 and just received text to say my daughter has been awarded 🎉 just on hold now waiting to see what we got as can’t sit all weekend not knowing 🤣

Congratulations 🥳

Thankyou so much I am honestly over the moon fingers crossed for you xxx

As long as you’ve proven that her card needs are higher than the average child her age then you’ll be fine. My son has a rare genetic disorder which only 600 people in the world are diagnosed with. He’s 17 months now and was awarded MRC when he was 11 months old (no over night needs so didn’t need HRC).

Think positive and hopefully it’ll be good news

Oh no @Mae1999 that is awful!! They were able to give me reasons over the phone and also offered to send a detailed breakdown because the rejection letter doesn’t really go into much detail if any, if you have the time; I really would call back and ask to start the MR process and ask for reasons/detailed breakdown to be sent out

I definitely think her needs are higher, she’s my first and only so I don’t have experience with regular children. She needs medication every 6 hours, regular check ups and blood tests with her endocrinologist, paediatrician and urologist which we have to travel 2.5 hours to. I’m constantly on edge watching her incase she hurts herself or becomes ill, we can’t leave the house without extra meds or emergency injection kit, and she can’t be left with anyone who isn’t fully aware of the condition and isn’t trained to administer the injection. She hasn’t had a day away from me or her father because we are the only ones trained

@Lilypad22 yep I completely get you. As long as you’ve clearly stated how you care for her, they’ll compare all the information given on your DD to an average 18 month old. Any additional evidence always helps too. Let us know how you go on

I’ve wrote a lot in the forms, I was too focused on getting the form done properly that I misread the part about saying not to include online fact sheets etc as not to send anything in with the forms and just realised last week that you can send bits in but thought it was too late to add anything. If I don’t hear anything I’ll call up Monday for an update

Don’t worry about it. If you get declined, do a MR and send all the evidence that you have. Instead of fact sheets or information letters include any reports that you’ve been given from members of DD’s health team. They’ll usually send you a report in the post after the appointment has been carried out.

Wishful thinking🤞

I caved and rang today for an update. Claim received 31/05 so 17 weeks 2 days today. After 1h 45 mins on hold my son's decision was made today. He was awarded. In total since applying I have received 2 letters and 2 texts saying we are still looking into your claim. No text today to inform about the decision but a letter is in the post. Hope this helps someone. Good luck

That’s amazing news! . I’m exactly 17 weeks today, I’m hoping a decision is made next week xx

New claim we are closer to week 16 than week 15 currently

I was 15 weeks yesterday. When I called on Tuesday they told me 2 more weeks 🙏

Please please ask for a mandatory reconsideration, write a detailed letter of what they didn't take into consideration, I used a site called advice now and they have a template all you do is just fill out your information, they should of been able to tell you the reasons on the phone though, if you've not already send every bit of evidence you have (make sure theyre photocopied) then if they still don't change there decision take it to tribunal.

Does anyone know if decision makers work the weekend? I'm 17 weeks today.
I rang yesterday and they said its not with a DM yet!! I'm starting to feel really deflated and anxious about it.

I read somewhere that they have a team working weekends to get through the backlog faster. I’m 17 weeks 2 days and wasn’t with a DM either when I called the other day

I am definitely going to do so I’m going to have a look at that website tonight to thank you

Anyone ever received a text on a weekend?

I was wondering the same hoping that they work weekends. I rang again today and they told me still not with a DM, fingers crossed we both hear back Monday with some good news xx

@Lilypad22 @Mumof2boys11
I called Wednesday (16+6) not with DM. I was 17 weeks Thursday. I called today (17+1) now with DM. So hopefully we should all hear in the next few days. Xx

I think next week is our week. Roll on Monday! X

We are the same Scan date 2/6, I’m gonna ring Monday , I want the weekend to fly over , so anxious with the wait x

@almightyfroggie @Mamto3boysX I am also the same scan date 2/06. Fingers crossed we hear something next week for the sake of our children 🙏
If you get through Monday please update, when I rang on Thursday it still wasn't with a DM :(
Thank you